Question:

Interesting post I read here but no one expanded on the subject.  What is the opinion of inhaled steroids and weight gain?  I would like every ones opinion whether weight actually increases using inhaled vs oral steroids.

Response:

Interesting post I read here but no one expanded on the subject.  What is the opinion of inhaled steroids and weight gain?  I would like every ones opinion whether weight actually increases using inhaled vs oral steroids.

Weight gain is a common side effect of oral steroids.  The chances of a steroid side effect is proportional to the dose – the greater the dose, the greater the chance of side effects.  IIRC the rule of thumb is that once the daily dose of inhaled steroid goes over 1000 micrograms, there is a chance of side effects. However as in all things relating to asthma and asthma medications: ‘Your milage may vary.’ "…there is always a well-known solution to every human problem–neat, plausible, and wrong."    H. L. Mencken

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Oral steriods like Prednisone definitely cause sudden weight gain and haven’t heard any convincing evidence that inhaled steriods do not. I have put on considerable weight since on Flovent 220 mcg and wonder if it might be to blame. Anyone else? Dana

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I take Advair, in the lowest dose, but I have lost weight.  

Same thing with me. I was beginning to think I was a lone ranger.

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I use the Advair Diskus and I also have lost weight.

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I’m on 2000mcg inhaled steroid per day with short weekly courses of 30mg every day when required (usually every two / three months or so). Much as I’d like to blame my weight gain on the above, and I’m sure it does play some small part, I think the main reason for being my being overweight whilst taking steroids is that I find it hard to exercise without getting out of breath and wheezy, get depressed from not being as active as I’d like, and hence use food as comfort. I’m kidding myself if I think I can just blame it on the steroids.

– Hide quoted text — Show quoted text – Interesting post I read here but no one expanded on the subject.  What is the opinion of inhaled steroids and weight gain?  I would like every ones opinion whether weight actually increases using inhaled vs oral steroids.

Response:

I take Advair, in the lowest dose, but I have lost weight.  I lift weights and work out 3 times a week.  I have lost 20 lbs since I started to work out.

– Hide quoted text — Show quoted text – Interesting post I read here but no one expanded on the subject.  What is the opinion of inhaled steroids and weight gain?  I would like every ones opinion whether weight actually increases using inhaled vs oral steroids.

Response:

Question:

I am using Serevent and Flovent 220 mcg, 2 puffs of each in the morning and then again in the evening.  I use the InspirEase spacer to take my medication.  Both medications state they contain enough medication for 120 puffs, which for me is a months worth of medication.  However, I have noticed that after a month instead of the cannisters being almost empty they are still half full.  I put them in water to measure them.  I am wondering why this is.  Could it be that the InspirEase doesn’t extract enough of the medicatiion from the cannister with each puff? Juls

Response:

I am using Serevent and Flovent 220 mcg, 2 puffs of each in the morning and then again in the evening.  I use the InspirEase spacer to take my medication.  Both medications state they contain enough medication for 120 puffs, which for me is a months worth of medication.  However, I have noticed that after a month instead of the cannisters being almost empty they are still half full.  I put them in water to measure them.  I am wondering why this is.  Could it be that the InspirEase doesn’t extract enough of the medicatiion from the cannister with each puff? Juls

How exactly does InspirEase work? All the spacers I’ve ever used simply had an opening on one end for the inhaler (where the mouth would usually be if not using a spacer) and an opening for me to breathe from. If that’s the case with InspirEase, then it wouldn’t make any difference in the amount of medicine that comes out when you press the canister down. I had actually read on some inhalers (might have been serevent, but I don’t remember) that that water measuring trick wasn’t very accurate and the best thing to do was keep track of how much you’re using. Also, is it possible that you have forgot to take every dose in a given month?

Response:

How exactly does InspirEase work? All the spacers I’ve ever used simply had an opening on one end for the inhaler (where the mouth would usually be if not using a spacer) and an opening for me to breathe from. If that’s the case with InspirEase, then it wouldn’t make any difference in the amount of medicine that comes out when you press the canister down.

Exactly..the only difference is that it has accordian -like folds and collapses as you take the meds…;

Response:

I am using Serevent and Flovent 220 mcg, 2 puffs of each in the morning and then again in the evening.  I use the InspirEase spacer to take my medication.  Both medications state they contain enough medication for 120 puffs, which for me is a months worth of medication.  However, I have noticed that after a month instead of the cannisters being almost empty they are still half full.  I put them in water to measure them.  I am wondering why this is.  Could it be that the InspirEase doesn’t extract enough of the medicatiion from the cannister with each puff?

The canisters are otherwise with propellant in order to ensure that the first actuation with have the same pressure as the 120th actuation.  The problem is that after 120 doses all you will be getting is propellant with no medication. No electrons were harmed in the posting of this message.

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Question:

Has anyone installed an aftermarket loft in a tent?? I have a Mountain Hardware Thru-Hiker, and would like to put a loft in it. Most of my friends have one that was an option on the tent that they purchased. Any advise is appreciated. Bill…

Response:

Has anyone installed an aftermarket loft in a tent?? I have a Mountain Hardware Thru-Hiker, and would like to put a loft in it. Most of my friends have one that was an option on the tent that they purchased. Any advise is appreciated.

Go back to where you purchased the tent in the first place. Chances are there is a specially designed loft for that tent (just as your friends suggested). — Cheers, Paul Weiss Quote: "To you, it’s a six-pack … to me, it’s a support group!" Quote: "Don’t take life too seriously … nobody gets out alive!"

Response:

Has anyone installed an aftermarket loft in a tent?? I have a Mountain Hardware Thru-Hiker, and would like to put a loft in it. Most of my friends have one that was an option on the tent that they purchased. Any advise is appreciated. Go back to where you purchased the tent in the first place. Chances are there is a specially designed loft for that tent (just as your friends suggested).

Thanks for the suggestion, but the place I have bought the tent is out of business. I have tried two other outdoor speciality stores that sell the Mountain Hardware brand of tent. They could offer no suggestions.  What I think I need to do is just sew in a couple of loops at the seam and attach a piece of netting, but I was hoping for some advice from someone who has already done such a task.

Response:

suggestions.  What I think I need to do is just sew in a couple of loops at the seam and attach a piece of netting, but I was hoping for some advice from someone who has already done such a task.

If there aren’t any loops inside the tent, then the manufacturer probably has not made a loft for that model.  Places like Campmor which sell lots of bits and pieces have generic lofts – usually a piece of mesh with some edge hemming and tie strings on the 4 corners.  Adding loops yourself should be easy if the seams a bound on the inside of the tent, allowing you to sew through the binding tape without penetrating the tent walls.  With other seams (flat fell and such) I’d be reluctant to attach anything for fear of puckering the fabric.  Tents usually use light fabric that is strongest if tension is uniform at all points and directions. Lofts a conventient, but not enough to be worth messing up the cut of the tent. Paul

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I found one at Galyans that has ties that will reach the four corners of my tent top.  I took some strong cord that I bought at a sewing supply shop and sewed four loops in the seams of my tent and then sealed them well with Campdry and seam sealer just for good measure.  Mine works great; good place to stash glasses, keys, etc., so they don’t get lost! Even though mine is made of mesh, it does cut down on the air circulation somewhat though.

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– Hide quoted text — Show quoted text – Has anyone installed an aftermarket loft in a tent?? I have a Mountain Hardware Thru-Hiker, and would like to put a loft in it. Most of my friends have one that was an option on the tent that they purchased. Any advise is appreciated. Go back to where you purchased the tent in the first place. Chances are there is a specially designed loft for that tent (just as your friends suggested). Thanks for the suggestion, but the place I have bought the tent is out of business. I have tried two other outdoor speciality stores that sell the Mountain Hardware brand of tent. They could offer no suggestions.  What I think I need to do is just sew in a couple of loops at the seam and attach a piece of netting, but I was hoping for some advice from someone who has already done such a task.

Try another outfitter and ask them if they have generic Eureka lofts. They used to make mesh lofts with tie loops at two, three or four points that would fit a whole host of tents of various shapes and sizes. — Cheers, Paul Weiss Quote: "To you, it’s a six-pack … to me, it’s a support group!" Quote: "Don’t take life too seriously … nobody gets out alive!"

Response:

Thanks for the suggestion, but the place I have bought the tent is out of business. I have tried two other outdoor speciality stores that sell the Mountain Hardware brand of tent. They could offer no suggestions.  What I think I need to do is just sew in a couple of loops at the seam and attach a piece of netting, but I was hoping for some advice from someone who has already done such a task.

I assume you’ve talked to Mountain Hardwear?  They can be most helpful. http://www.mountainhardwear.com/talkBack.html

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Question:

- Hide quoted text — Show quoted text – Hi Enfilade, Effexor is a big time drug to be on for depression – it is usually used for major depression and even some psychotic disorders.  I understand that you want off of the medication because you feel good now – but remember, that is the medication helping you to feel better and control your depression. If you are wanting to try something that won’t turn you into a zombie, ask your doctor about weaning off of it, while being started on something else. If you are taken off of medication completely and you begin to relapse, you could spiral downward before a new drug takes effect (anti-depressants usually take 3-4 weeks before full effect is reached). The consequesnces of that far outweight the benefits of being "drug-free." Also, a relapse is usually worse once being taken off of a medication because of the major changes in the chemicals in your brain… Please be careful I know there is a stigma attached to being on medication for depression, but it is an illness…. Really think of the benefits of the medication vesus the possible results of being off of the medication. Talk to your doc first about switching to a different kind, one that still helps your symptoms, but with less side effects. Good luck

This is wonderful advice, judging from my experience with clinically’ depressed loved ones. Have your doctor help you find a drug that does not interefere with your quality of life–but remember that depression kills. It is a terrible, debilitating disease.

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I have to second this.  These days with managed care, a lot of antidepressants are prescribed by general physicians who frankly don’t have the right pharmocological background.

Yes. And they are prescribing them to people without clinical illness, in many cases. Sometimes I think half the people on antidepressants are not clinically depressed, they just want to "feel better." I think this is dangerous. I’ve been very lucky– in a sense– because my depressions have always been under a psychiatrist’s treatment.  I’m not saying this is true of everyone, but with my history, and my genetics, I have a very strong inclination towards depression.  I would no more try to "tough" out a depression without medication than I would refuse insulin if I were diabetic. I have had the experience of withdrawing off a very tough drug (nardil), and while I never hope to repeat such a thing, it was incredibly important that I do it.  I am now stable on a low dose of Wellbutrin, which seems to have little/no side effects for me.

Wellbutrin has been a wonder drug for a friend of mine. So few side effects for her.

Response:

That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

I was on Effexor for about three years, and went off it for much the same reasons you mentioned. I’ve been off antidepresants for a couple years now, but it’s getting to be time to start again. Going to have to visit the doc to get a prescription for something other than Effexor. If you do it carefully, with the doc monitoring you closely, I’d sure think it ought to be possible to wean yourself off the Effexor until you can start with something else. Of course if you don’t have health insurance the "close monitoring" thing might be a problem too. We’ll be sending our best purrs that you are able to find a way to make the transition off of Effexor.

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– Hide quoted text — Show quoted text – This is my first vent here… I want to get off the Effexor I’ve been taking for depression for almost a year now.  I’ve been more stable than DP’s seen me to be in the past 8 years, in the last 6 months.  Unfortunately, in those last 6 months I also sleep about 12 hours a day, and occasionally I get this "Stoned" sensation where stuff gets blurry and I have trouble thinking of words or figuring out just where I am…I’ll wander and then snap out of my reverie like, two hours later, wondering where the time went. The stuff’s expensive as hell, I have no drug coverage, and there’s no way I can do a master’s thesis in September if I’m sleeping more than I’m awake. If I want back on flight operations, I have to lose the drugs that could affect my ability to control an aircraft. So today I’m at the doctor’s and he tells me that if I quit the stuff, I’m almost guaranteed to relapse. DP’s afraid I will, sometime when no one’s around to stop me from cutting my throat–or someone else’s. I’m in my 20s.  I don’t want to be on this crap for the rest of my life.  Hell, the concept of being stuck on drugs is one of the big reasons I left my depression untreated until I became a menace to people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8 years apart.  The minor rounds I could handle without chemical interference.  At that rate, it’d be 2013 before I needed pills again. That’s a lot of money and a lot of drug-free years. That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

Over the years, I worked my way through just about all the prescription drugs for depression. At this time, I’ve been on Venlafaxine for several years now; according to my shrink, I’ll never develop an "immunity" to it, the way I gradually did to each other. Ask your doctor to consider it.

Response:

If you do it carefully, with the doc monitoring you closely, I’d sure think it ought to be possible to wean yourself off the Effexor until you can start with something else. Of course if you don’t have health insurance the "close monitoring" thing might be a problem too. We’ll be sending our best purrs that you are able to find a way to make the transition off of Effexor.

Howdy folks! Thanks for all your comments.  I really appreciate it. "Close monitoring’ is easy for me because DP is a medical student. Also, in Canada, visiting the doctor is free.  The only thing I have to pay for is the pills. Now, with DP being a medical student, he and I have gone ’round on this one…while he thinks I should be on /something/, he also is willing to live by my decision, if a bit nervously.  At first he insisted that Effexor couldn’t possibly make me sleepy because his medical journals say it causes insomnia; however, today he met up with a neurophysician friend, who said that there are instances of that side effect on record, so NA NAAAA *sticks out tongue* *Serves you right to believe the studies instead of me PPPPPPTHHH!!!* *ahem* As for side effects, once in a snowstorm I did without for three days and aside from a bit of dizziness (I’ve had far worse from the flu) I was fine.  What I don’t like is, the doc says the stuff isn’t addictive, and yet if I’m not supposed to go off it EVER, I might as /well/ be addicted. What am I on it for?  Well, for the most part, I have my stuff pretty well together.  For 25 years I’d hit "lows", which never lasted more than about 6 hours.  I’d spend those days in my room, watching videos if I could concentrate and lying around if I couldn’t, waiting for the "weather to pass."  I could handle this. My first bad time hit when I started feeling abandoned by my friends, broke up with my boyfriend, had health issues, my grades slipped a bit, and I and got kicked out of the house by my mom for taking a spare to address the grades thing.  I was living on people’s couches and/or the public airport, and wanted a lot of support from my friends that they didn’t or couldnt or didn’t know to give (I’m an independent SOB who didn’t know how to ask for help, so it wasn’t entirely their fault.) I was 17, had done all I wanted to do in my life, and didn’t know how I was going to keep myself fed and sheltered until I got to university, or if it wasn’t maybe ready for me to call my life "finished" since I’d met all my goals. My more recent one involved 7 months of looking for work when my EI ran out and I took a job at the mall.  Another 2 months with a jealous co-worker actively trying to get me fired, a position that involved coercive selling despite what I was told at my interview, more unsuccessful job interviews, and me with a master’s degree going apesh!t from boredom, while DPs life was at its high point and he was celebrating being here in this city while I wanted to grab my duffel bag and go back to living in cars and airports if it’d get me out of here. It takes some pretty bad sh!t to set me off…so while I /am/ a little, er, short-fused at those times, normal life doesn’t evoke depression in me.  I’m hopefully in a master’s program full time next year–academia is a stabilizing lifestyle for me.  Better to do another master’s than end up in the nutty house.  Anyway, I think my life will be pretty stable then–DP is such a calming influence on me.  Sometimes I feel like he’s my nurse.  Of course, on his part, he sometimes tends to be quite naive and carefree/careless, and needs me watching his back.  "Just because YOU wouldn’t steal a car doesn’t mean someone else wouldn’t…so LOCK THE CAR." –Fil

Response:

– Hide quoted text — Show quoted text – Effexor isn’t the only antidepressant out there, and your doc is greatly remiss in not considering exploring other meds. There are ADs that don’t cause hypersomnia, and which might be less expensive than Effexor. The problem with Effexor is that quitting cold is not an option; it has to be done gradually and incrementally. Quitting all at once produces an extremely undesirable sensation known as "brain spins," "brain shivers," "brain surges," and other unsavory encephalitic phrases. One person described it to me as feeling like your brain is spinning inside your head. Alternatives are out there, and you deserve to have the chance to explore them. I can only add to what everyone else has said.  AD medication is not yet totally understood.  As sufferers, we have to accept that.  After all, we all would like a perfect world, but it just isn’t there yet.  The best thing is to find a practitioner who is willing to try different medication until the benefit outways the side-effects. Don’t forget you need a few weeks to wean off the old drug, and a few weeks for the new one to start to work properly.  It took me a year or two of trying several different drugs until we found one that has almost no side-effects and works really well.

Absolute agreement. The withdrawal effects, and also trying to figure out if the new drug is starting to work, takes time. In some cases, it’s not just clearing confusion. In the case of the MAO inhibitors, not letting another drug clear (about 2 weeks) can kill you. MAO inhibitors are effective, but they have so many drug and food interactions — potentially lethal ones — that they are avoided. A drug that won’t let you have chocolate, chianti, or aged cheese? Perish the thought!   – Hide quoted text — Show quoted text – If this sounds like a long time, it’s not really.  Almost the first drug you try will help with the AD and you will feel better; from there it’s just a matter of fine-tuning the process so that the side-effects are reduced.  Some people will put up with a bit of sleeplessness, others loss of libido, others jitterness.  You just need to find a drug whose side-effects are acceptable to you. Good luck, and don’t give up, because it *does* help in the long run.  I am feeling fine with my drugs and I’ve almost *no* side-effects.

Response:

On 2005-03-09, Karen penned: Well, I’ll tell you what. I work below a doctor’s office, and EVERY (every single  solitary) day, I watch pharmaceutical reps tote in expensive (and I do mean from the BEST places in town) lunches for everyone. It is absolutely *revolting* to see this kind of "bribing" taking place every day. And you should see the vehicles the reps arrive in. No matter how much pharmaceutical companies cry "but it is SOOOOO expensive to research these very necessary drugs" whenever ever drug prices are brought up, I don’t believe it. I believe their marketing budget far outweighs their research. And how many pens and chairs (I kid you not, I saw two stadium chairs stamped with a huge Nexium logo woven right in at a garage sale this summer) and note pads do you see lying around? Makes me just want to urp.

My SIL worked as a biologist for a major pharmaceutical company and said basically the same thing. — monique, who spoils Oscar unmercifully pictures: http://www.bounceswoosh.org/rpca

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– Hide quoted text — Show quoted text – What gets to me about the antidepressant drug business is that it’s very well known that some drugs will work for some people while others will work better for other people. But, the only way to find out which one’s right for you is the brute force approach – try ‘em all until you find one that works for you. There’s very little research that examines which antidepressants work best for which people out in the community and why.   <cynic After all, drug manufacturers are probably doing quite well out of the brute force approach… it wouldn’t be in THEIR best interests to sponsor research that might find a better way. would it? </cynic Actually, there is a lot of research, or at least experience that gets shared among the psychiatrists that really want the information.  They may be specialists in psychopharmacology. Sometimes, the extra training there can get them networking with the right people. I remember a scathing editorial on Medscape.com by a pediatric psychopharmacologist, who was furious at all too many psychiatrists who overprescribe the newer drugs. Why?  Not studying?  Too much influence by pharmaceutical companies? Now, pharmacology has always been one of my interests. I’ve found a surprising number of doctors that don’t know the biochemistry of the multiple classes of drugs useful in different kinds of depression and with different patients, including:    Post-synaptic nonselective of ST and NE, operating on the    catechol-O-methyl-transferase enzyme system    Post-synaptic nonselective of ST and NE, operating on the    monoamine oxidase enzyme system    Pre-synaptic selective ST reuptake inhibitors    "Atypical" pre-synaptic ST reuptake inhibitors    Pre-synaptic nonselective ST/NE reuptake inhibitors    Pre-synaptic selective NE reuptake inhibitors    Anticonvulsants    Lithium    Stimulant amines like Ritalin    Strattera … need I go on?  Something that often gets missed is a patient with mixed anxiety and depression, who may need an anxiolytic as well as an antidepressant. There are also drugs that can help minimize the side effects of some of the psychotropics, such as beta-blockers to minimize the hand tremor common with the anticonvulsant valproate. OK, I’m only a number-cruncher – I freely admit that I know nothing about pharmacology and I’m just spouting speculation. But it does seem to me that an awful lot of published drug studies don’t reflect how medications are really used in the community as opposed to what happens in carefully controlled clinical trials.

Precisely. In the US, the manufacturer applies to the Food and Drug Administration (FDA) with a New Drug Application (NDA) seeking licensing of a new drug. The FDA and the manufacturer agreee on the clinical trials that have been done [1] or need to be done, and, when there is sufficient information, an approval officer or panel decides whether to authorize a license. [1] Earlier in the process, a manufacturer, or independent researcher,     can apply for an Investigational New Drug (IND) application, which     gives the authority to use it in clinical trials.  INDs are not     available by prescription, although there is a "compassionate use"     procedure by which a clinician can request a supply of the     experimental drug for a patient in whom all other therapies have     failed. Each NDA is for a specific list of "indications", or conditions the manufacturer asserts the drug will treat.  Physicians are permitted to prescribe drugs for "off-label" indications not in the manufacturers’ literature. Part of the time, off-label prescribing can be a good way to use the knowledge of experienced physicians, especially for rarer conditions where the manufacturer didn’t want to pay for clinical trials for the other indication. An unfortunate other part of the time, however, we have seen pharmaceutical company representatives pushing off-label indications to increase sales, with no data backing it up. Incidentally, I’m not opposed to all pharmaceutical representatives, often called "detail men".  Some are extremely knowledgeable, help independent researchers and clinicians meet one another, and act as a channel between practicing physicians and the company research department. Others have the ethics of used car salesmen — and that’s increasingly common in their profit-driven upper management. It’s sad to remember that the accepted term for the US prescription drug manufacturers was the "ethical pharmaceutical industry."  At one time, many of the manufacturers really did have a commitment to medicine over short-term profit. In Australia (don’t know whether things are different in the USA) hardly anyone would be able to get their antidepressants prescribed by a psychiatrist – there are just so few of them that even if you’re able to pay privately, the waiting list for an appointment will be months long. You really have to be so ill that you’re a danger to other people (a danger to yourself isn’t enough) to be able to see a psychiatrist quickly. So, most people have to go to a GP to get a prescription, and I guess the shared experience of specialist psychiatrists on choosing an antidepressant isn’t reaching them. Then again, the shrinks are probably too darned overworked to publish what they know…

Quite frankly, then, I’ll put in a suggestion to the Australian medical authorities that they might do well to use computer assistance from one of my research areas: expert systems for prescribing. While my work has more been in cardiology and infectious disease, it’s quite possible to construct a "consultant in a box" that can help a primary physician select drugs and find alternatives. Unfortunately, there is an overall problem of specialist knowledge reaching GPs. In the US, there are several annual studies that show poor dissemination of knowledge. For example, cardiologists (a subspecialty of internal medicine, with their own subspecialties beyond that) usually know what drugs have been found good and bad in treating heart attack or congestive heart failures. Some of the effective drugs are NOT intuitive. Internists don’t have as high a knowledge of the correct drugs. The percentage of primary care physicians that know the most up-to-date therapies tends to be even lower. I must say that cuddling a cat is one of the best ways I’ve found to deal with depression in the short term. I personally find a big, heavy one with long whiskers and loud purrs most effective.

Absolutely.  Purring time should be reimbursable under all insurance plans!

Response:

This is my first vent here… I want to get off the Effexor I’ve been taking for depression for almost a year now.  I’ve been more stable than DP’s seen me to be in the past 8 years, in the last 6 months.  Unfortunately, in those last 6 months I also sleep about 12 hours a day, and occasionally I get this "Stoned" sensation where stuff gets blurry and I have trouble thinking of words or figuring out just where I am…I’ll wander and then snap out of my reverie like, two hours later, wondering where the time went. The stuff’s expensive as hell, I have no drug coverage, and there’s no way I can do a master’s thesis in September if I’m sleeping more than I’m awake. If I want back on flight operations, I have to lose the drugs that could affect my ability to control an aircraft. So today I’m at the doctor’s and he tells me that if I quit the stuff, I’m almost guaranteed to relapse. DP’s afraid I will, sometime when no one’s around to stop me from cutting my throat–or someone else’s. I’m in my 20s.  I don’t want to be on this crap for the rest of my life.  Hell, the concept of being stuck on drugs is one of the big reasons I left my depression untreated until I became a menace to people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8 years apart.  The minor rounds I could handle without chemical interference.  At that rate, it’d be 2013 before I needed pills again.  That’s a lot of money and a lot of drug-free years. That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

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That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

Aw Fil, I know *EXACTLY* how you feel.  My doctor put me on Effexor because it’s supposed to help with the pain of Fibromyalgia.  Not *ONCE* did he tell me that the withdrawals from this drug are worse than the withdrawals from heroine – and last longer.  Please, *PLEASE*, don’t quit taking this drug cold turkey (that’s what I did because my doctor wouldn’t help me get off them in a gradual way).  I ended up in the emergency room and found out later that I could have killed myself by doing this. My daughter was also put on Effexor, but for depression.  She wanted to get off of them too, but couldn’t, not even with a gradual withdrawal (as soon as she missed one dose she would have horrible, severe flu-like symptoms. Some other withdrawal symptoms of Effexor that I had are feeling like I was being electrocuted with pulsing shock like feelings all through my body, nausea, heart palpitations, cold sweats, insomnia, dizziness, headaches, shakes, going into fugue states and not remembering where I was or what I was doing (really scary when you’re driving), crying jags and screaming rages. There is supposedly a class-action lawsuit against Wyeth-Ayerst Labs because they knew all about these symptoms but still pushed this drug for all kinds or medical problems besides depression.  There are newsgroup and chat rooms dedicated to nothing but the horrible side effects and withdrawal symptoms of this drug. Here is the result of a google search on Effexor withdrawal symptoms: http://www.google.com/search?hl=en&q=effexor+withdrawals. Again, please be very careful how you go about getting off this drug, if you decide to.  I’ve heard that ClaritinD helps somewhat with the withdrawals. Hugs, CatNipped

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- Hide quoted text — Show quoted text – Hi Nipped, That is one of the symptoms I had when I first stepped down the dosage – major flu like symptoms, and extremely exhausted. I am now over that, but it took almost a month.  My dr. said it was a Fibromyalgia flare, and it was because the Effexor had been controlling the symptoms and it wasn’t any more. Honestly, I felt WORSE after this drug than I ever did before as far as the fibro went. It is like it exacerbated it, rather than controlling it. Yeah, for me too.  I really didn’t feel any diminishment of pain from the fibro while I was on the Effexor.  It *did* help the depression that was caused by the fibro (finding out that you’re going to be in constant pain for the rest of your life can be quite depressing).  And you’re right, the pain during withdrawals was definitely worse than the pain I had before I started taking it.  I really don’t know why they haven’t taken this drug off the market – there’s beeen thousands of complaints to the FDA about it.  I think there’s been some *marjor* payoffs regarding this golden goose of the drug company that manufactures it.

It really does work for some people – me for one. When I started it I felt like I’d been woken up after years asleep. I’m not good at describing this sort of thing, but on this drug I actually started to feel like I could DO something – make choices and take actions – that might have some sort of effect on my life. I’d been through the usual list of other antidepressants – some didn’t work at all, some worked for a while, one worked well but I had an allergic reaction to it. I’m down to a really low dose now, but am not keen to stop it altogether in case I slide back into that old black hole again. So I can say it’s been good for me, but obviously it’s not good for everyone and probably is dangerous for some. What gets to me about the antidepressant drug business is that it’s very well known that some drugs will work for some people while others will work better for other people. But, the only way to find out which one’s right for you is the brute force approach – try ‘em all until you find one that works for you. There’s very little research that examines which antidepressants work best for which people out in the community and why.    <cynic After all, drug manufacturers are probably doing quite well out of the brute force approach… it wouldn’t be in THEIR best interests to sponsor research that might find a better way. would it? </cynic

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Hi Enfilade, Just want to let you know I wrote you a private email on this subject.  Let me know if you don’t get it. regards, Christine

– Hide quoted text — Show quoted text – This is my first vent here… I want to get off the Effexor I’ve been taking for depression for almost a year now.  I’ve been more stable than DP’s seen me to be in the past 8 years, in the last 6 months.  Unfortunately, in those last 6 months I also sleep about 12 hours a day, and occasionally I get this "Stoned" sensation where stuff gets blurry and I have trouble thinking of words or figuring out just where I am…I’ll wander and then snap out of my reverie like, two hours later, wondering where the time went. The stuff’s expensive as hell, I have no drug coverage, and there’s no way I can do a master’s thesis in September if I’m sleeping more than I’m awake. If I want back on flight operations, I have to lose the drugs that could affect my ability to control an aircraft. So today I’m at the doctor’s and he tells me that if I quit the stuff, I’m almost guaranteed to relapse. DP’s afraid I will, sometime when no one’s around to stop me from cutting my throat–or someone else’s. I’m in my 20s.  I don’t want to be on this crap for the rest of my life.  Hell, the concept of being stuck on drugs is one of the big reasons I left my depression untreated until I became a menace to people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8 years apart.  The minor rounds I could handle without chemical interference.  At that rate, it’d be 2013 before I needed pills again.  That’s a lot of money and a lot of drug-free years. That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

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Is there a different antidepressant, with fewer side effects, that your doctor can help you switch over to? Nobody wants to be on meds for the long haul. That goes double for a med that’s causing side effects that are as disruptive to daily living as the problem the medicine is supposed to be relieving. But some people, including me, would be in a permanent state of depression without meds. In my case, even what I USED to think of as a normal state was a low-level state of depression, and I’ve wavered between that and flat-out clinical depression since I was 10. (Which means I’ve been dealing with this for over 30 years.) But it was being downsized a few years ago that brought on a really, REALLY severe and unrelenting case of depression. Finally, I went to the doctor because the symptoms were not only debilitating, they were showing no signs of lifting. The prescription I’m on right now is Celexa (citalopram), and it has helped a lot. It also doesn’t have the side effects you were describing. Maybe you can discuss switching over to that or to a different prescription that will help the depression, minus the side effects you’re getting from the Effexor. My husband is on thyroid medication, permanently, because his thyroid doesn’t produce enough hormone on its own. Friends and relatives of mine take insulin or pills to regulate diabetes, since their bodies don’t produce enough insulin. And there’s no difference between their permanent need for meds, and the fact that my body needs some help getting the serotonin level right. There’s no shame in needing any of those meds, or any other prescription, not even if it’s necessary over the long haul. It’s not fun AT ALL to have to deal with these issues. ( But see if you can work with your doctor to change to a different medication. And if this doc won’t work with you on that, it’s time for a second opinion. Keep us posted. Donna

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Effexor isn’t the only antidepressant out there, and your doc is greatly remiss in not considering exploring other meds. There are ADs that don’t cause hypersomnia, and which might be less expensive than Effexor. The problem with Effexor is that quitting cold is not an option; it has to be done gradually and incrementally. Quitting all at once produces an extremely undesirable sensation known as "brain spins," "brain shivers," "brain surges," and other unsavory encephalitic phrases. One person described it to me as feeling like your brain is spinning inside your head. Alternatives are out there, and you deserve to have the chance to explore them.

I can only add to what everyone else has said.  AD medication is not yet totally understood.  As sufferers, we have to accept that.  After all, we all would like a perfect world, but it just isn’t there yet.  The best thing is to find a practitioner who is willing to try different medication until the benefit outways the side-effects. Don’t forget you need a few weeks to wean off the old drug, and a few weeks for the new one to start to work properly.  It took me a year or two of trying several different drugs until we found one that has almost no side-effects and works really well.   If this sounds like a long time, it’s not really.  Almost the first drug you try will help with the AD and you will feel better; from there it’s just a matter of fine-tuning the process so that the side-effects are reduced.  Some people will put up with a bit of sleeplessness, others loss of libido, others jitterness.  You just need to find a drug whose side-effects are acceptable to you. Good luck, and don’t give up, because it *does* help in the long run.  I am feeling fine with my drugs and I’ve almost *no* side-effects.

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- Hide quoted text — Show quoted text – What gets to me about the antidepressant drug business is that it’s very well known that some drugs will work for some people while others will work better for other people. But, the only way to find out which one’s right for you is the brute force approach – try ‘em all until you find one that works for you. There’s very little research that examines which antidepressants work best for which people out in the community and why.   <cynic After all, drug manufacturers are probably doing quite well out of the brute force approach… it wouldn’t be in THEIR best interests to sponsor research that might find a better way. would it? </cynic Actually, there is a lot of research, or at least experience that gets shared among the psychiatrists that really want the information.  They may be specialists in psychopharmacology. Sometimes, the extra training there can get them networking with the right people. I remember a scathing editorial on Medscape.com by a pediatric psychopharmacologist, who was furious at all too many psychiatrists who overprescribe the newer drugs. Why?  Not studying?  Too much influence by pharmaceutical companies? Now, pharmacology has always been one of my interests. I’ve found a surprising number of doctors that don’t know the biochemistry of the multiple classes of drugs useful in different kinds of depression and with different patients, including:    Post-synaptic nonselective of ST and NE, operating on the    catechol-O-methyl-transferase enzyme system    Post-synaptic nonselective of ST and NE, operating on the    monoamine oxidase enzyme system    Pre-synaptic selective ST reuptake inhibitors    "Atypical" pre-synaptic ST reuptake inhibitors    Pre-synaptic nonselective ST/NE reuptake inhibitors    Pre-synaptic selective NE reuptake inhibitors    Anticonvulsants    Lithium    Stimulant amines like Ritalin    Strattera … need I go on?  Something that often gets missed is a patient with mixed anxiety and depression, who may need an anxiolytic as well as an antidepressant. There are also drugs that can help minimize the side effects of some of the psychotropics, such as beta-blockers to minimize the hand tremor common with the anticonvulsant valproate.

OK, I’m only a number-cruncher – I freely admit that I know nothing about pharmacology and I’m just spouting speculation. But it does seem to me that an awful lot of published drug studies don’t reflect how medications are really used in the community as opposed to what happens in carefully controlled clinical trials. In Australia (don’t know whether things are different in the USA) hardly anyone would be able to get their antidepressants prescribed by a psychiatrist – there are just so few of them that even if you’re able to pay privately, the waiting list for an appointment will be months long. You really have to be so ill that you’re a danger to other people (a danger to yourself isn’t enough) to be able to see a psychiatrist quickly. So, most people have to go to a GP to get a prescription, and I guess the shared experience of specialist psychiatrists on choosing an antidepressant isn’t reaching them. Then again, the shrinks are probably too darned overworked to publish what they know… I must say that cuddling a cat is one of the best ways I’ve found to deal with depression in the short term. I personally find a big, heavy one with long whiskers and loud purrs most effective.

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- Hide quoted text — Show quoted text – This is my first vent here… I want to get off the Effexor I’ve been taking for depression for almost a year now.  I’ve been more stable than DP’s seen me to be in the past 8 years, in the last 6 months.  Unfortunately, in those last 6 months I also sleep about 12 hours a day, and occasionally I get this "Stoned" sensation where stuff gets blurry and I have trouble thinking of words or figuring out just where I am…I’ll wander and then snap out of my reverie like, two hours later, wondering where the time went. The stuff’s expensive as hell, I have no drug coverage, and there’s no way I can do a master’s thesis in September if I’m sleeping more than I’m awake. If I want back on flight operations, I have to lose the drugs that could affect my ability to control an aircraft. So today I’m at the doctor’s and he tells me that if I quit the stuff, I’m almost guaranteed to relapse. DP’s afraid I will, sometime when no one’s around to stop me from cutting my throat–or someone else’s. I’m in my 20s.  I don’t want to be on this crap for the rest of my life.  Hell, the concept of being stuck on drugs is one of the big reasons I left my depression untreated until I became a menace to people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8 years apart.  The minor rounds I could handle without chemical interference.  At that rate, it’d be 2013 before I needed pills again.  That’s a lot of money and a lot of drug-free years. That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

Effexor isn’t the only antidepressant out there, and your doc is greatly remiss in not considering exploring other meds. There are ADs that don’t cause hypersomnia, and which might be less expensive than Effexor. The problem with Effexor is that quitting cold is not an option; it has to be done gradually and incrementally. Quitting all at once produces an extremely undesirable sensation known as "brain spins," "brain shivers," "brain surges," and other unsavory encephalitic phrases. One person described it to me as feeling like your brain is spinning inside your head. Alternatives are out there, and you deserve to have the chance to explore them.

Response:

In article – Hide quoted text — Show quoted text – Is there a different antidepressant, with fewer side effects, that your doctor can help you switch over to? Nobody wants to be on meds for the long haul. That goes double for a med that’s causing side effects that are as disruptive to daily living as the problem the medicine is supposed to be relieving. But some people, including me, would be in a permanent state of depression without meds. In my case, even what I USED to think of as a normal state was a low-level state of depression, and I’ve wavered between that and flat-out clinical depression since I was 10. (Which means I’ve been dealing with this for over 30 years.) But it was being downsized a few years ago that brought on a really, REALLY severe and unrelenting case of depression. Finally, I went to the doctor because the symptoms were not only debilitating, they were showing no signs of lifting. The prescription I’m on right now is Celexa (citalopram), and it has helped a lot. It also doesn’t have the side effects you were describing. Maybe you can discuss switching over to that or to a different prescription that will help the depression, minus the side effects you’re getting from the Effexor.

Celexa is in a different family than Effexor. Celexa, along with Paxil and a few others, is considered an "atypical" selective serotonin reuptake inhibitor. I’ve gotten biochemical enough without getting into why these are considered "atypical" with respect to Prozac, Zoloft, etc. Yes, yes, yes. If one psychotropic drug doesn’t work well, there tend to be alternatives, both within the same family and in different families.   For example, I have intolerable dry mouth with the tricyclic antidepressant amitriptyline (Elavil), but not with the closely related nortriptyline (Pamelor). My husband is on thyroid medication, permanently, because his thyroid doesn’t produce enough hormone on its own. Friends and relatives of mine take insulin or pills to regulate diabetes, since their bodies don’t produce enough insulin. And there’s no difference between their permanent need for meds, and the fact that my body needs some help getting the serotonin level right. There’s no shame in needing any of those meds, or any other prescription, not even if it’s necessary over the long haul. It’s not fun AT ALL to have to deal with these issues. ( But see if you can work with your doctor to change to a different medication. And if this doc won’t work with you on that, it’s time for a second opinion.

Exactly. I find more physicians "stuck" with a very few psychotropic drugs than almost any other class of medications. If an infectious disease specialist only wanted to use 2 or 3 classes of antibiotics, they’d be considered candidates for psychotherapy, or at least intensive retraining. Why can’t psychiatrists bother with the alternativews available to them?

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Too many psychiatrists are overly fixated on single drugs or drug classes. They seem to fixate on the newest drugs, rather than older ones that can be quite effective

Well, I’ll tell you what. I work below a doctor’s office, and EVERY (every single  solitary) day, I watch pharmaceutical reps tote in expensive (and I do mean from the BEST places in town) lunches for everyone. It is absolutely *revolting* to see this kind of "bribing" taking place every day. And you should see the vehicles the reps arrive in. No matter how much pharmaceutical companies cry "but it is SOOOOO expensive to research these very necessary drugs" whenever ever drug prices are brought up, I don’t believe it. I believe their marketing budget far outweighs their research. And how many pens and chairs (I kid you not, I saw two stadium chairs stamped with a huge Nexium logo woven right in at a garage sale this summer) and note pads do you see lying around? Makes me just want to urp.

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What gets to me about the antidepressant drug business is that it’s very well known that some drugs will work for some people while others will work better for other people. But, the only way to find out which one’s right for you is the brute force approach – try ‘em all until you find one that works for you. There’s very little research that examines which antidepressants work best for which people out in the community and why.    <cynic After all, drug manufacturers are probably doing quite well out of the brute force approach… it wouldn’t be in THEIR best interests to sponsor research that might find a better way. would it? </cynic

Actually, there is a lot of research, or at least experience that gets shared among the psychiatrists that really want the information.  They may be specialists in psychopharmacology. Sometimes, the extra training there can get them networking with the right people. I remember a scathing editorial on Medscape.com by a pediatric psychopharmacologist, who was furious at all too many psychiatrists who overprescribe the newer drugs. Why?  Not studying?  Too much influence by pharmaceutical companies? Now, pharmacology has always been one of my interests. I’ve found a surprising number of doctors that don’t know the biochemistry of the multiple classes of drugs useful in different kinds of depression and with different patients, including:    Post-synaptic nonselective of ST and NE, operating on the    catechol-O-methyl-transferase enzyme system    Post-synaptic nonselective of ST and NE, operating on the    monoamine oxidase enzyme system    Pre-synaptic selective ST reuptake inhibitors    "Atypical" pre-synaptic ST reuptake inhibitors    Pre-synaptic nonselective ST/NE reuptake inhibitors    Pre-synaptic selective NE reuptake inhibitors    Anticonvulsants    Lithium    Stimulant amines like Ritalin    Strattera … need I go on?  Something that often gets missed is a patient with mixed anxiety and depression, who may need an anxiolytic as well as an antidepressant. There are also drugs that can help minimize the side effects of some of the psychotropics, such as beta-blockers to minimize the hand tremor common with the anticonvulsant valproate.

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(Snip) But some people, including me, would be in a permanent state of depression without meds. In my case, even what I USED to think of as a normal state was a low-level state of depression, and I’ve wavered between that and flat-out clinical depression since I was 10. (Which means I’ve been dealing with this for over 30 years.)

I have to second this.  These days with managed care, a lot of antidepressants are prescribed by general physicians who frankly don’t have the right pharmocological background.  I’ve been very lucky– in a sense– because my depressions have always been under a psychiatrist’s treatment.  I’m not saying this is true of everyone, but with my history, and my genetics, I have a very strong inclination towards depression.  I would no more try to "tough" out a depression without medication than I would refuse insulin if I were diabetic. I have had the experience of withdrawing off a very tough drug (nardil), and while I never hope to repeat such a thing, it was incredibly important that I do it.  I am now stable on a low dose of Wellbutrin, which seems to have little/no side effects for me. Theresa Stinky Pictures: http://community.webshots.com/album/125591586JWEFwh My Blog: http://www.humanitas.blogspot.com

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This is my first vent here… I want to get off the Effexor I’ve been taking for depression for almost a year now.  I’ve been more stable than DP’s seen me to be in the past 8 years, in the last 6 months.  Unfortunately, in those last 6 months I also sleep about 12 hours a day, and occasionally I get this "Stoned" sensation where stuff gets blurry and I have trouble thinking of words or figuring out just where I am…I’ll wander and then snap out of my reverie like, two hours later, wondering where the time went.

Funny how things work — we are looking at it as an alternative, but only if we can’t tweak the dosage on my present drugs. If Effexor does have a positive effect as well as side effects, there is a reasonable class of alternatives: the "first-generation" tricyclic antidepressants (TCA).  Cheap, and with a different side effect profile. Both Effexor and the TCAs differ from the "second generation" selective serotonin reuptake inhibitors (SSRI) in being nonselective: they elevate both serotonin and norepinephrine, rather than just serotonin. The two classes do it by different mechanisms. Effexor works presynaptically, slowing the reuptake into the transmitting cell. TCAs work postsynaptically, inhibiting the enzyme catechol-O-methyl-transferase, which metabolizes serotonin and norepinephrine in The stuff’s expensive as hell, I have no drug coverage, and there’s no way I can do a master’s thesis in September if I’m sleeping more than I’m awake. If I want back on flight operations, I have to lose the drugs that could affect my ability to control an aircraft. So today I’m at the doctor’s and he tells me that if I quit the stuff, I’m almost guaranteed to relapse.

Too many psychiatrists are overly fixated on single drugs or drug classes. They seem to fixate on the newest drugs, rather than older ones that can be quite effective — and usually much cheaper. IIRC, a month’s supply of nortriptyline is around USD $10.  TCAs fall into two families, the first drug of one class being amitriptyline and the first drug of the second being imipramine.  The second group tends to be less sedating, although you can usually minimize sedation by changing drugs within the same group. I’m in my 20s.  I don’t want to be on this crap for the rest of my life.  Hell, the concept of being stuck on drugs is one of the big reasons I left my depression untreated until I became a menace to people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8 years apart.  The minor rounds I could handle without chemical interference.  At that rate, it’d be 2013 before I needed pills again.  That’s a lot of money and a lot of drug-free years.

That may be perfectly good reasoning. Having someone that can get creative with the drugs, seeking less sedating and cheaper alternatives, also can be valid. That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off.

Personally, I don’t have a "rest of my life" concern with psychotropic drugs, any more than my cardiac drugs — _IF_ they are appropriately prescribed with plenty of thought.

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<very gently snipped My daughter was also put on Effexor, but for depression.  She wanted to

get off of them too, but couldn’t, not even with a gradual withdrawal (as soon as she missed one dose she would have horrible, severe flu-like symptoms. Hi Nipped, That is one of the symptoms I had when I first stepped down the dosage – major flu like symptoms, and extremely exhausted. I am now over that, but it took almost a month.  My dr. said it was a Fibromyalgia flare, and it was because the Effexor had been controlling the symptoms and it wasn’t any more. Honestly, I felt WORSE after this drug than I ever did before as far as the fibro went. It is like it exacerbated it, rather than controlling it. Thanks for the tip on ClaritinD – I will most certainly try it. Patti

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Hi Nipped, That is one of the symptoms I had when I first stepped down the dosage – major flu like symptoms, and extremely exhausted. I am now over that, but it took almost a month.  My dr. said it was a Fibromyalgia flare, and it was because the Effexor had been controlling the symptoms and it wasn’t any more. Honestly, I felt WORSE after this drug than I ever did before as far as the fibro went. It is like it exacerbated it, rather than controlling

it. Yeah, for me too.  I really didn’t feel any diminishment of pain from the fibro while I was on the Effexor.  It *did* help the depression that was caused by the fibro (finding out that you’re going to be in constant pain for the rest of your life can be quite depressing).  And you’re right, the pain during withdrawals was definitely worse than the pain I had before I started taking it.  I really don’t know why they haven’t taken this drug off the market – there’s beeen thousands of complaints to the FDA about it.  I think there’s been some *marjor* payoffs regarding this golden goose of the drug company that manufactures it. Hugs, CatNipped – Hide quoted text — Show quoted text – Thanks for the tip on ClaritinD – I will most certainly try it. Patti

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– Hide quoted text — Show quoted text – This is my first vent here… I want to get off the Effexor I’ve been taking for depression for almost a year now.  I’ve been more stable than DP’s seen me to be in the past 8 years, in the last 6 months.  Unfortunately, in those last 6 months I also sleep about 12 hours a day, and occasionally I get this "Stoned" sensation where stuff gets blurry and I have trouble thinking of words or figuring out just where I am…I’ll wander and then snap out of my reverie like, two hours later, wondering where the time went. The stuff’s expensive as hell, I have no drug coverage, and there’s no way I can do a master’s thesis in September if I’m sleeping more than I’m awake. If I want back on flight operations, I have to lose the drugs that could affect my ability to control an aircraft. So today I’m at the doctor’s and he tells me that if I quit the stuff, I’m almost guaranteed to relapse. DP’s afraid I will, sometime when no one’s around to stop me from cutting my throat–or someone else’s. I’m in my 20s.  I don’t want to be on this crap for the rest of my life.  Hell, the concept of being stuck on drugs is one of the big reasons I left my depression untreated until I became a menace to people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8 years apart.  The minor rounds I could handle without chemical interference.  At that rate, it’d be 2013 before I needed pills again. That’s a lot of money and a lot of drug-free years. That red haze is starting to creep back a little, since the doc didn’t in any way suggest that this was a "for the rest of my life" kind of thing until just now.  I feel like I’ve gotten suckered into this situation, and that pisses me off. –Enfilade

Hi Enfilade, Effexor is a big time drug to be on for depression – it is usually used for major depression and even some psychotic disorders.  I understand that you want off of the medication because you feel good now – but remember, that is the medication helping you to feel better and control your depression. If you are wanting to try something that won’t turn you into a zombie, ask your doctor about weaning off of it, while being started on something else. If you are taken off of medication completely and you begin to relapse, you could spiral downward before a new drug takes effect (anti-depressants usually take 3-4 weeks before full effect is reached). The consequesnces of that far outweight the benefits of being "drug-free." Also, a relapse is usually worse once being taken off of a medication because of the major changes in the chemicals in your brain… Please be careful I know there is a stigma attached to being on medication for depression, but it is an illness…. Really think of the benefits of the medication vesus the possible results of being off of the medication. Talk to your doc first about switching to a different kind, one that still helps your symptoms, but with less side effects. Good luck

Response:

 This is my first vent here…  I want to get off the Effexor I’ve been taking for depression for  almost a year now.  I’ve been more stable than DP’s seen me to be in  the past 8 years, in the last 6 months.  Unfortunately, in those last  6 months I also sleep about 12 hours a day, and occasionally I get  this "Stoned" sensation where stuff gets blurry and I have trouble  thinking of words or figuring out just where I am…I’ll wander and  then snap out of my reverie like, two hours later, wondering where the  time went.  The stuff’s expensive as hell, I have no drug coverage, and there’s no  way I can do a master’s thesis in September if I’m sleeping more than  I’m awake. If I want back on flight operations, I have to lose the  drugs that could affect my ability to control an aircraft.  So today I’m at the doctor’s and he tells me that if I quit the stuff,  I’m almost guaranteed to relapse.  DP’s afraid I will, sometime when no one’s around to stop me from  cutting my throat–or someone else’s.  I’m in my 20s.  I don’t want to be on this crap for the rest of my  life.  Hell, the concept of being stuck on drugs is one of the big  reasons I left my depression untreated until I became a menace to  people around me as well as myself.  I think I know the symptoms well enough–if I start inflicting injury on myself and viewing life through a red rage haze, it’s time to go back on the pills.  I was depressed, I think, since about age 4 or so, but during that time I only had two severe (ie, want-to-kill-myself) episodes, and those 8  years apart.  The minor rounds I could handle without chemical  interference.  At that rate, it’d be 2013 before I needed pills again.   That’s a lot of money and a lot of drug-free years.  That red haze is starting to creep back a little, since the doc didn’t  in any way suggest that this was a "for the rest of my life" kind of  thing until just now.  I feel like I’ve gotten suckered into this  situation, and that pisses me off.  –Enfilade Hi Fil, I have been on Effexor for about 3 years, and am now in the process of stepping down the dose in order to quit.  I was having some of the same symptoms as you – the feeling of ‘not being there’ is one major one, and the just not caring about things. Plus, I am one of the 5 to 10% that develop high blood pressure while taking it.  I finally told my doc that I WAS going to d/c this, with or without his help. He finally agreed, with the proviso that if I become depressed again I would tell him. It hasn’t been completely easy, but at least I am able to feel again. I hope you can get your dr. to take you off this, and that everything goes ok! Patti

Response:

Question:

In article <CBCDB80EF44270BC.26D7666505F55084.E728EE952AB90…@lp.airnews.net

, "Mark

– Hide quoted text — Show quoted text -and Kristy" <mearn…@airmail.net

wrote: Hey!  I’m new here, have schizophrenia, and I guess the reason I sought it out is cause I’m having negative symptoms for the first time.  I guess I thought it was related to the quitting smoking, but this may be the price I pay to live. This morning, and for the past four mornings, I didn’t get out of bed.  I missed school and three scheduled interviews.  Could this be seasonal, cyclical or something?  It is really the first time this has ever happened to me.  I was thinking about the word, "apathy."  But, I don’t think that’s it.  I still feel and care.  I just don’t have much energy.  I’m also paranoid about school right now.  I feel like they are telling me lies. I wonder if Y’all know what I mean?  Sounds like it.  I’ve never been in a support group for schizophrenics.  I’ve read books.  Blechy!  They make it sound worse than what I have experienced. . . . So, do you think I’m having negative symptoms?  Sure have had a lot of positive ones.  Voices and what not. Well, sorry to ramble on this way. Yours Truly, Kristy

My problem with not smoking is that I start to get TOO energized. I smoke a Cig and I feel (like crap) back to normal. I want to quit soon. Maybe for my birthday. sp

Response:

Risperdal also badly effects my respiratory system. The main reason I won’t take it. No point in being free of sz symptoms if you are dead. <chuckle

You had this too? when i told my doc that i found it hard to breathe, he was very dismissive that it was NOT the medication causing that. I was put on risperdal also. My lackage of energy increased on the meds and found myself sleeping way too much. When i was outside, walking up hills became very difficult to do, would quickly get out of breath. Before and after the meds…i am in physically good shape and find no problems walking up the hills.

Response:

Glad to you hear you are doing O.K. without regular medication.  I thought Risperidone caused weight gain but not as severely as some other anti-psychotics. I also tried Seroquel but noticed a return of my positive symptoms and quickly switched back to Risperidone.  I’ve also heard that Seroquel has few side-effects.  Hopefully it will be available in Australia soon and you can give it a try. Frank. Dan Coyote, Jon Steiner, Fritz on the fritz, BWAG!, Morpheus <Manage…@nospam.com

wrote in message

news:oBei4.52$643.2459@nsw.nnrp.telstra.net… – Hide quoted text — Show quoted text -

Frank wrote in message … Well I’ve stopped wearing my engineering ring because it’s simply too

tight

to get on and off without half removing my finger.  I have to get it resized.  I think this is due to weight gain though not drug-related swelling.  I can still get my wedding ring on, thank goodness. The main side-effects I’ve noticed from Risperidone are a slowed-down or sedated feeling, weight gain and a sexual side-effect when I was on

higher

doses.  Yes I realize it is very personal to mention this but I feel

people

should be open and informed about these things.  I think I’ve read that

the

sexual side-effect only occurs in a small number of people (just lucky I guess). Frank. Many people have mentioned a lessening of libido while on medication. It seems many if not most sz meds affect the sex drive. The weight gain problem of Risperdal was one of the reasons which

persuaded

me to stop taking drugs altogether. It is one of the more virulent meds in promoting weight gain, so I have

been

told by many sources. It was more important to loose weight because of the associated health problems than to worry about the problems of sz *in my case*. Risperdal also badly effects my respiratory system. The main reason I

won’t

take it. No point in being free of sz symptoms if you are dead. <chuckle I have stelizine as a back up if I need it but so far so good. If at all possible I will not take stelizine because of the very real dangers of developing TD…more so than with the newer drugs. I’ve been on the stuff for over 17 years, on and off. And as you may know, the longer you take some of the older drugs, the greater the danger of developing TD. The quantity is also a determining factor. I am waiting for seroquol <sp to come onto the Australian market. Many people say there isn’t the weight gain problem. BTW, it would have been "nice" if the initial "psychiatrist" had mentioned the long term dangers of stelizine. But this was way back in a time long ago when sufferers were not treated with respect. Has it really changed that much today, I sometimes wonder. Many, if not most of us, are between a rock and a hard place. Regards, Jon

Response:

Ditto to the Risperdal thing (I prefer to call it Risperidone).  I started on 3 mg./day and am now down to 1 mg./day.  I found it took a long time completely eliminate my positive symptoms so don’t expect any quick miracles. Frank. Mark and Kristy <mearn…@airmail.net

wrote in message

news:737B2E48E2248BD7.7AC8E6653E7646CA.939762A89352B8BB@lp.airnews.net… – Hide quoted text — Show quoted text -

Wow!  This is interesting!  I’m on the risperdal, too.  Could that be related? Your friend, Kristy

Response:

Frank wrote in message …

Well I’ve stopped wearing my engineering ring because it’s simply too tight to get on and off without half removing my finger.  I have to get it resized.  I think this is due to weight gain though not drug-related swelling.  I can still get my wedding ring on, thank goodness. The main side-effects I’ve noticed from Risperidone are a slowed-down or sedated feeling, weight gain and a sexual side-effect when I was on higher doses.  Yes I realize it is very personal to mention this but I feel people should be open and informed about these things.  I think I’ve read that the sexual side-effect only occurs in a small number of people (just lucky I guess). Frank.

Many people have mentioned a lessening of libido while on medication. It seems many if not most sz meds affect the sex drive. The weight gain problem of Risperdal was one of the reasons which persuaded me to stop taking drugs altogether. It is one of the more virulent meds in promoting weight gain, so I have been told by many sources. It was more important to loose weight because of the associated health problems than to worry about the problems of sz *in my case*. Risperdal also badly effects my respiratory system. The main reason I won’t take it. No point in being free of sz symptoms if you are dead. <chuckle

I have stelizine as a back up if I need it but so far so good. If at all possible I will not take stelizine because of the very real dangers of developing TD…more so than with the newer drugs. I’ve been on the stuff for over 17 years, on and off. And as you may know, the longer you take some of the older drugs, the greater the danger of developing TD. The quantity is also a determining factor. I am waiting for seroquol <sp

to come onto the Australian market. Many

people say there isn’t the weight gain problem. BTW, it would have been "nice" if the initial "psychiatrist" had mentioned the long term dangers of stelizine. But this was way back in a time long ago when sufferers were not treated with respect. Has it really changed that much today, I sometimes wonder. Many, if not most of us, are between a rock and a hard place. Regards, Jon

Response:

Wow, 400 hours of sick time.  You win this contest hands down.  You must have a very understanding employer, like me.  Do you find you are able to distinguish between the negative symptoms of your illness and the sedative effect of Risperidone?  I am never quite sure which one is causing my "negative-like" symptoms, especially when I was on a higher dose of Risperidone. Hang in there. Frank. pete_l <pete_lNOpeS…@altavista.com.invalid

wrote in message

news:37fa504d.1655f846@usw-ex0106-046.remarq.com… – Hide quoted text — Show quoted text -

Hi Frank! I had 400 hours off sick last year.  I turned in at 8:30am and worked 9 hours straight today.  I take 4mg/risperidone day.  If you get a heavy negative period it stays around for weeks.  It is not just one day now and then.  Plus I found If I am getting pissed off and leaned on at work the negatives are harder to work through.  If that happens to you , kick someone. Regards, Peter * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network

*

The fastest and easiest way to search and participate in Usenet – Free!

Response:

Well I’ve stopped wearing my engineering ring because it’s simply too tight to get on and off without half removing my finger.  I have to get it resized.  I think this is due to weight gain though not drug-related swelling.  I can still get my wedding ring on, thank goodness. The main side-effects I’ve noticed from Risperidone are a slowed-down or sedated feeling, weight gain and a sexual side-effect when I was on higher doses.  Yes I realize it is very personal to mention this but I feel people should be open and informed about these things.  I think I’ve read that the sexual side-effect only occurs in a small number of people (just lucky I guess). Frank. Dan Coyote, Jon Steiner, Fritz on the fritz, BWAG!, Morpheus <Manage…@nospam.com

wrote in message

news:wZPh4.165$%J2.8086@nsw.nnrp.telstra.net… – Hide quoted text — Show quoted text -

<enter Jon Frank wrote in message … In my case I’m only on 1 mg./day of Risperidone so I would think any negative symptoms I feel are from my illness and not the medication. Side-effects should be pretty minimal at this dose. Have you ever experienced swelling of the limbs etc as a result of taking Risperadal? Jon

Response:

Yes I found that once a lot of supports were in place and I was on the risperadol I could wake up on time a lot more.  I don’t spend so much time in bed.  I am way more active now. Frank Levy <frank…@netcom.ca

wrote in message

news:Snmh4.205249$5r2.561603@tor-nn1.netcom.ca… – Hide quoted text — Show quoted text -

Has anyone found anything that helps with negative symptoms?  I am on Risperidone (1 mg./day) and in the package liner information it claims to help with negative symptoms but I don’t see much evidence of that.  It has my positive symptoms under control though so that’s something to be

thankful

for.  My negative symptoms have diminished somewhat over the past year or so.  I wonder if I can expect them to continue to diminish?

Response:

Frank, It is early days, but it seems to be doing the trick for me.  I hope it works for you too – good luck! Tony http://come.to/theloonybin "Frank" <frank…@netcom.ca

wrote in message

news:PgOh4.206678$5r2.563431@tor-nn1.netcom.ca… – Hide quoted text — Show quoted text -

So you find Seroquel works for negative symptoms as well as positive?  I tried Seroquel when I was recovering from my psychosis and my psychotic symptoms returned so I quickly switched back to Risperidone.  Maybe I’ll

ask > my psychiatrist about Seroquel for negative symptoms.  Thanks for the tip. > Frank. > Vicky and Tony <vickyandt…@cwcom.net

wrote in message

> news:XCAh4.693$M47.11176@news1-hme0… > > Seroquel seems to be working for me Frank.  It was recommended to me as I

am very intolerant of psychiatric medications and so far I am happy with

it.

No real side effects (which is unusual for me) apart from a dry mouth – but that is easily cured Tony http://come.to/theloonybin

Response:

<enter Jon

Frank wrote in message …

In my case I’m only on 1 mg./day of Risperidone so I would think any negative symptoms I feel are from my illness and not the medication. Side-effects should be pretty minimal at this dose.

Have you ever experienced swelling of the limbs etc as a result of taking Risperadal? Jon

Response:

Hey!  I’m new here, have schizophrenia, and I guess the reason I sought it out is cause I’m having negative symptoms for the first time.  I guess I thought it was related to the quitting smoking, but this may be the price I pay to live. This morning, and for the past four mornings, I didn’t get out of bed.  I missed school and three scheduled interviews.  Could this be seasonal, cyclical or something?  It is really the first time this has ever happened to me.  I was thinking about the word, "apathy."  But, I don’t think that’s it.  I still feel and care.  I just don’t have much energy.  I’m also paranoid about school right now.  I feel like they are telling me lies. I wonder if Y’all know what I mean?  Sounds like it.  I’ve never been in a support group for schizophrenics.  I’ve read books.  Blechy!  They make it sound worse than what I have experienced. . . . So, do you think I’m having negative symptoms?  Sure have had a lot of positive ones.  Voices and what not. Well, sorry to ramble on this way. Yours Truly, Kristy

Response:

Wow!  This is interesting!  I’m on the risperdal, too.  Could that be related? Your friend, Kristy

Response:

Hi Kristy, Welcome to the group.  What you’re describing sounds like negative symptoms to me.  For myself lack of motivation is the biggest problem with a bit of apathy thrown in.  That seems to be what you are describing.  I also have trouble getting up at a specific time (especially early in the morning).  I usually am able to pull it off for something important like a meeting at work or a meeting with a client, something like that.  Where I have difficulty is on those regular everyday work days when nothing special is planned.  I find it really tough to get going on those days.  I used to find it hard to get ready to go out with friends or family as well but that seems to have diminished.  It’s mainly work related now. If your positive symptoms are disappearing I wouldn’t be surprised if the negatives are rolling on in.  I haven’t really found anything that helps although Tony has reported that Seroquel is doing the job for him (he just started on it recently).  Drinking coffee seems to help a little.  Of course you have to be out of bed to do that. Hope you feel better, Frank. Mark and Kristy <mearn…@airmail.net

wrote in message

news:CBCDB80EF44270BC.26D7666505F55084.E728EE952AB90237@lp.airnews.net… – Hide quoted text — Show quoted text -

Hey!  I’m new here, have schizophrenia, and I guess the reason I sought it out is cause I’m having negative symptoms for the first time.  I guess I thought it was related to the quitting smoking, but this may be the price

I

pay to live. This morning, and for the past four mornings, I didn’t get out of bed.  I missed school and three scheduled interviews.  Could this be seasonal, cyclical or something?  It is really the first time this has ever happened to me.  I was thinking about the word, "apathy."  But, I don’t think

that’s

it.  I still feel and care.  I just don’t have much energy.  I’m also paranoid about school right now.  I feel like they are telling me lies. I wonder if Y’all know what I mean?  Sounds like it.  I’ve never been in a support group for schizophrenics.  I’ve read books.  Blechy!  They make it sound worse than what I have experienced. . . . So, do you think I’m

having

negative symptoms?  Sure have had a lot of positive ones.  Voices and what not. Well, sorry to ramble on this way. Yours Truly, Kristy

Response:

Well here I am again.  Home from work on a sick day.  I couldn’t get out of bed until 11:30 due to negative symptoms.  The only thing that finally got me out was to see what was new on the newsgroup.  Still I’m not doing too badly.  This is the first sick day I’ve taken in 2000.  Although I have taken a couple of vacation days.  I had over 200 hours of sick time last year.  For that I feel really guilty.  I’m hoping to do much better this year.  Sometimes I think I’m just lazy but I don’t really think that can be the case.  I very rarely missed any sick time before my sz. Has anyone found anything that helps with negative symptoms?  I am on Risperidone (1 mg./day) and in the package liner information it claims to help with negative symptoms but I don’t see much evidence of that.  It has my positive symptoms under control though so that’s something to be thankful for.  My negative symptoms have diminished somewhat over the past year or so.  I wonder if I can expect them to continue to diminish? I’m sure glad to have this computer.  It’s given me hours of enjoyment and allowed me to access this newsgroup. Frank.

Response:

In article <Snmh4.205249$5r2.561…@tor-nn1.netcom.ca

,

  "Frank Levy" <frank…@netcom.ca

wrote:

  I wonder if I can expect them to continue to diminish?

I’m sure glad to have this computer.  It’s given me hours of enjoyment and allowed me to access this newsgroup. Frank.

— It is not laziness but more like a vacuum or a rut, being in a rut was described as a grave with both ends kicked out, but I know how hard it is to get it in gear and doing simple things like keeping a room clean or maintaining things, I think we just quit like many who get into those depression ruts and stay there as a result of trauma or some other cause, but I have often wished that someone would kick me in the rear to get started again, since it can be tough to get motivated and the batteries recharged. I also think we lose focus or direction and things being difficult that use to come easy in decision making or thinking with common sense, knowing I was an accident just waiting to happen or a walking disaster and lost that capacity to care about people and understanding things for what they are and only seeing what we imagine things to be, reading more between the lines than what is black and white and often misunderstand motives etc., but for a year or so i just wanted to find a cave and stay there in just losing that will to keep going, having no feeling for anything or anybody, just got to roll the stone away and come out of the tomb which is a process and not a project, little by little and one day at a time in changing the direction of things. Crazy Lou http://www.grizzadam.com/ Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

I know where you are coming from when you speak of reading (too much) between the lines and misinterpreting motives, etc.  This was one of my main problems when I was psychotic.  I thought everything someone said had an alternate meaning (something rude or negative) when it wasn’t intended that way at all.  I’m much better at this now. Frank. Grizz <loco…@worldnet.att.net

wrote in message

news:8655fs$l08$1@nnrp1.deja.com… – Hide quoted text — Show quoted text -

In article <Snmh4.205249$5r2.561…@tor-nn1.netcom.ca,   "Frank Levy" <frank…@netcom.ca wrote:   I wonder if I can expect them to continue to diminish? I’m sure glad to have this computer.  It’s given me hours of enjoyment

and

allowed me to access this newsgroup. Frank. — It is not laziness but more like a vacuum or a rut, being in a rut was described as a grave with both ends kicked out, but I know how hard it is to get it in gear and doing simple things like keeping a room clean or maintaining things, I think we just quit like many who get into those depression ruts and stay there as a result of trauma or some other cause, but I have often wished that someone would kick me in the rear to get started again, since it can be tough to get motivated and the batteries recharged. I also think we lose focus or direction and things being difficult that use to come easy in decision making or thinking with common sense, knowing I was an accident just waiting to happen or a walking disaster and lost that capacity to care about people and understanding things for what they are and only seeing what we imagine things to be, reading more between the lines than what is black and white and often misunderstand motives etc., but for a year or so i just wanted to find a cave and stay there in just losing that will to keep going, having no feeling for anything or anybody, just got to roll the stone away and come out of the tomb which is a process and not a project, little by little and one day at a time in changing the direction of things. Crazy Lou http://www.grizzadam.com/ Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

Seroquel seems to be working for me Frank.  It was recommended to me as I am very intolerant of psychiatric medications and so far I am happy with it. No real side effects (which is unusual for me) apart from a dry mouth – but that is easily cured Tony http://come.to/theloonybin

Response:

In article <Snmh4.205249$5r2.561…@tor-nn1.netcom.ca

, "Frank Levy"

– Hide quoted text — Show quoted text -<frank…@netcom.ca

wrote: Well here I am again.  Home from work on a sick day.  I couldn’t get out of bed until 11:30 due to negative symptoms.  The only thing that finally got me out was to see what was new on the newsgroup.  Still I’m not doing too badly.  This is the first sick day I’ve taken in 2000.  Although I have taken a couple of vacation days.  I had over 200 hours of sick time last year.  For that I feel really guilty.  I’m hoping to do much better this year.  Sometimes I think I’m just lazy but I don’t really think that can be the case.  I very rarely missed any sick time before my sz. Has anyone found anything that helps with negative symptoms?  I am on Risperidone (1 mg./day) and in the package liner information it claims to help with negative symptoms but I don’t see much evidence of that.  It has my positive symptoms under control though so that’s something to be thankful for.  My negative symptoms have diminished somewhat over the past year or so.  I wonder if I can expect them to continue to diminish? I’m sure glad to have this computer.  It’s given me hours of enjoyment and allowed me to access this newsgroup. Frank.

I’ve missed allot of work this last year because of Neg symptoms. I’ve been diagnosed with SZ for 20 years, but I’ve never had Neg symptoms before, so this is new to me. I’ve basically been in bed for a year. I drag myself to work, then come home and get in bed. I don’t go out, or do anything. Like you the one thing I do get out of bed for is to get on this newsgroup. Actually I think the meds are what’s causing the "lethargy" Neg symptoms. It’s gotten a little better lately, but still pretty bad. If you figure out an answer, tell me too. SP

Response:

It sure helps to reduce the isolation when you can’t get out!  And it’s something to look forward to! I think that it would be interesting to study the effect of the internet newsgroups and chat rooms on the psychiatric client community.  I imagine it’s opened up communication for a lot of people who previously could only ‘open up’ on the p-doc’s couch. Even a group as socially hidden as the schizophrenic community now finds itself able to share, communicate, and offer support.  What a difference! The ‘Global Village’ idiots rise up, band together,  and discover that they are people, too!  (I mean that in a nice way!  ;-)   ) Love, Strength, and Courage. Frank Levy <frank…@netcom.ca

wrote in message

news:Snmh4.205249$5r2.561603@tor-nn1.netcom.ca… – Hide quoted text — Show quoted text -

Well here I am again.  Home from work on a sick day.  I couldn’t get out

of

bed until 11:30 due to negative symptoms.  The only thing that finally got me out was to see what was new on the newsgroup.  Still I’m not doing too badly.  This is the first sick day I’ve taken in 2000.  Although I have taken a couple of vacation days.  I had over 200 hours of sick time last year.  For that I feel really guilty.  I’m hoping to do much better this year.  Sometimes I think I’m just lazy but I don’t really think that can

be

the case.  I very rarely missed any sick time before my sz. Has anyone found anything that helps with negative symptoms?  I am on Risperidone (1 mg./day) and in the package liner information it claims to help with negative symptoms but I don’t see much evidence of that.  It has my positive symptoms under control though so that’s something to be

thankful

for.  My negative symptoms have diminished somewhat over the past year or so.  I wonder if I can expect them to continue to diminish? I’m sure glad to have this computer.  It’s given me hours of enjoyment and allowed me to access this newsgroup. Frank.

Response:

Hi Frank! I had 400 hours off sick last year.  I turned in at 8:30am and worked 9 hours straight today.  I take 4mg/risperidone day.  If you get a heavy negative period it stays around for weeks.  It is not just one day now and then.  Plus I found If I am getting pissed off and leaned on at work the negatives are harder to work through.  If that happens to you , kick someone. Regards, Peter * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

So you find Seroquel works for negative symptoms as well as positive?  I tried Seroquel when I was recovering from my psychosis and my psychotic symptoms returned so I quickly switched back to Risperidone.  Maybe I’ll ask my psychiatrist about Seroquel for negative symptoms.  Thanks for the tip. Frank. Vicky and Tony <vickyandt…@cwcom.net

wrote in message

news:XCAh4.693$M47.11176@news1-hme0… – Hide quoted text — Show quoted text -

Seroquel seems to be working for me Frank.  It was recommended to me as I

am

very intolerant of psychiatric medications and so far I am happy with it. No real side effects (which is unusual for me) apart from a dry mouth –

but

that is easily cured Tony http://come.to/theloonybin

Response:

Yea, the meds can definitely cause negative-like symptoms as well. Sometimes it’s hard to know which symptoms are from the illness and which are from the meds.  I’ve asked my psychiatrist how you can tell whether your "negative-like" symptoms are caused by the illness or the meds and she always says "I don’t know". In my case I’m only on 1 mg./day of Risperidone so I would think any negative symptoms I feel are from my illness and not the medication. Side-effects should be pretty minimal at this dose. Anyway, hang in there and I hope you feel better.  At least we still make it to work most of the time, right.  There’s something positive there! Frank. Spiritus <spiri…@sanctus.org

wrote in message

news:spiritus-ya02408000R2001000314400001@news.supernews.com… – Hide quoted text — Show quoted text -

In article <Snmh4.205249$5r2.561…@tor-nn1.netcom.ca, "Frank Levy" <frank…@netcom.ca wrote: Well here I am again.  Home from work on a sick day.  I couldn’t get out

of

bed until 11:30 due to negative symptoms.  The only thing that finally

got

me out was to see what was new on the newsgroup.  Still I’m not doing

too

badly.  This is the first sick day I’ve taken in 2000.  Although I have taken a couple of vacation days.  I had over 200 hours of sick time last year.  For that I feel really guilty.  I’m hoping to do much better this year.  Sometimes I think I’m just lazy but I don’t really think that can

be

the case.  I very rarely missed any sick time before my sz. Has anyone found anything that helps with negative symptoms?  I am on Risperidone (1 mg./day) and in the package liner information it claims

to

help with negative symptoms but I don’t see much evidence of that.  It

has

my positive symptoms under control though so that’s something to be

thankful

for.  My negative symptoms have diminished somewhat over the past year

or

so.  I wonder if I can expect them to continue to diminish? I’m sure glad to have this computer.  It’s given me hours of enjoyment

and

allowed me to access this newsgroup. Frank. I’ve missed allot of work this last year because of Neg symptoms. I’ve

been

diagnosed with SZ for 20 years, but I’ve never had Neg symptoms before, so this is new to me. I’ve basically been in bed for a year. I drag myself to work, then come home and get in bed. I don’t go out, or do anything. Like you the one thing I do get out of bed for is to get on this newsgroup. Actually I think the meds are what’s causing the "lethargy" Neg symptoms. It’s gotten a little better lately, but still pretty bad. If you figure

out

an answer, tell me too. SP

Response:

My negative symptoms went away for a day.  I got lots of laundry done.  I felt energized and motivated. The only recent change, that might be a cause, is that I have been taking a Probiotic called Culturelle for three days. It is much too soon to draw any conclusions. Nothing I have ever previously done has helped with negative symptoms, so this effect is a surprise.

Response:

newer meds helped me get more work done less sleeping all day — Peter Timusk B.Math Just trying to stay linear www3.sympatico.ca/ptimusk www.webpagex.org "Cubit" <n…@no.not

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My negative symptoms went away for a day.  I got lots of laundry done.  I felt energized and motivated. The only recent change, that might be a cause, is that I have been taking

a

Probiotic called Culturelle for three days. It is much too soon to draw any conclusions. Nothing I have ever previously done has helped with negative symptoms, so this effect is a surprise.

Response:

Question:

I can hardly keep my thoughts together today…..I’m not going in to work again today. ….and, when I called in, she tried to make me feel guilty.   It’s almost like my hormones override these medications.  I become overly sensitive, irritable, paranoid, fearful, anxious, restless…..just to name a few symptoms.  I know that stupid depo shot is still in my system.  I can feel it. I don’t have anything to grip on to, and this is a horrible feeling.  Maybe that’s why that show Greed kept my heart pounding last night.   I know this will go away in a few days, but what do I do in the meantime? I haven’t done a "pity party" post for awhile, so I guess it was overdue.     My doc is out of town AGAIN for the weekend….. I feel like Sharyn today…..I just want to cry. ( Maria

Response:

Thanks Chip, I really like these articles…. For anyone interested, or that has PMS problems…   I took the other half of my celexa pill the other day, (because of feeling horrible, and PMS) and noticed quite immediate effects….as I was laying down for a nap, I realized she had given me 40 mg. tabs, which I break in half so they last me 2 months, or so that I can increase to 40 if I want to.  So, it turns out I’ve been taking double my usual dosage these past couple days.  (It never occurred to me, because I always broke my paxil in half). Well, the funny part is when I did this once before, not during PMS…..I was so tired, I could barely walk. This time, I feel great…..no PMS symptoms!! Today I feel very calm….and, even spent the day at the mall with some friends, (which usually makes me cranky being around crowds for long periods of time). I wasn’t a bit irritated…and, before the extra celexa I was a wreck. Now, I’m curious to see the effect it will have on me after my period….if it will be too high of a dose.   I really like this 40 mg. right now. Just an interesting self observation of my situation…. Bye, Maria    

Response:

: : Valerie Davis Raskin, MD, wrote a very good book titled, : "When Words Are Not Enough; The Women’s Prescription for : Depression and Anxiety." The book is not too expensive : and written for the general public, so you may want to : buy a copy via Amazon or some other book shop. It covers : a lot of issues that are important to women who suffer : from anxiety and depression. : : Thankyou for that information Arthur. I remember it being one of the trivia : questions, but I didn’t know what it was about. : Maria I had originally bought the book for my mother. However, she didn’t read it at first (being very psychoanalysis oriented) so I borrowed it for a while. The book is very practical; with chapters on sex, pregnancy, menstral cycles, etc. It addresses medication questions that I often see posted here in ASAP and has some nice tables on medications. I’m tempted to buy a copy for my own little anxiety-panic library. Which reminds me, mom still has my copy of Sheehan. I ought to start distributing library cards (grin). Best Wishes, Arthur

Response:

Biological Therapies in Psychiatry Alan J. Gelenberg, M.D. Treating PMS While most women experience some physical and emotional changes premenstrually, a minority are clinically impaired by the premenstrual syndrome (PMS). For ages, unproven and largely ineffectual remedies were promulgated. In recent years, however, greater methodologic rigor has enhanced clinical research on this condition. Better still, the advent of the serotonin-selective reuptake inhibitor (SSRI) antidepressants has shown that medication can alleviate PMS symptoms and reverse dysfunction. Several recent reviews present evidence and knowledgeable opinions on treating PMS. Dr Walter Brown notes that SSRIs have a much more rapid onset of action when used to treat PMS than when the same drugs are used to treat depression. (1) PMS symptoms improve almost immediately, while depressive symptoms typically take several weeks to lift. This author also observes that while serotonergic, noradrenergic, and other agents appear equal in efficacy when treating depression, only highly serotonergic antidepressants are effective for PMS. Further evidence for the role of serotonin in PMS is that tryptophan, the essential amino acid that serves as a dietary precursor for serotonin, and fenfluramine (Pondimin and Redux), which stimulates serotonin neurotransmission, also appear effective against PMS. Moreover, women with PMS show abnormalities in blood serotonin. What about other antidepressants? Yonkers and Brown write about an ongoing, multicenter trial of venlafaxine (Effexor) for premenstrual dysphoric disorder (PMDD). (2) Venlafaxine can be started at 25 mg bid to manage side effects and then increased by 25 to 37.5 mg/day each cycle until remission is achieved. Investigators hope venlafaxine’s rapid onset of action will be beneficial in this type of intermittent disorder. An open trial suggested that nefazodone (Serzone) may be effective against PMDD or premenstrual exacerbation (PME) of a preexisting mood disorder when administered in daily doses of 200 to 500 mg throughout the menstrual cycle. Anxiolytic agents too might have a role to play. Limited data suggest possible efficacy for buspirone (Buspar). Yonkers and Brown also use alprazolam (Xanax) for women with mild PMS symptoms of limited duration. They recommend a starting dose of 0.25 mg bid or tid, increased as needed. In many studies of drugs to treat PMS, agents are administered daily throughout the month. But some women appear to benefit from taking a drug only during the premenstrual week or starting with the first symptom and ending with the beginning of menses. For example, clomipramine (Anafranil) is efficacious when administered only in the luteal phase of the menstrual cycle. Although there are no systematic data on the long-term use of drugs for premenstrual disorders, Yonkers and Brown state that symptom relief appears to be maintained. What else can be done to combat PMS symptoms? Pearlstein cites recommendations to increase complex carbohydrate consumption. (3) When combined with more frequent meals, this strategy might enhance cerebral uptake of tryptophan, thereby making more serotonin available. Some women find exercise alleviates symptoms. Other nonpharmacologic strategies include cognitive behavioral therapy and relaxation training. When symptoms of PMS, PMDD, or PME rise to the level of clinical significance, serotonergic antidepressants often can bring relief, with dosage and timing individualized for each patient. Recommendations for diet, exercise, and other nonpharmacologic strategies — as alternatives or additions to drug treatment — also can be considered based on preferences and circumstances. (1) Brown WA: PMS: A quiet breakthrough. Psychiatr Ann 1996; 26: 569-570. (2) Yonkers KA, Brown WA: Pharmacologic treatments for premenstrual dysphoric disorder. Psychiatr Ann 1996; 26: 586-589. (3) Pearlstein T: Nonpharmacologic treatment of premenstrual syndrome. Psychiatr Ann 1996; 26: 590-594.

Response:

Thanks Chip, I’m actually saving this in my files.   BTW, I do feel much better today, and will from now on increase my celexa dose during PMS.  I’ve actually learned a lot over the  last couple of days.  I apologize if I snapped anyone’s head off in the meantime.   Bye, Maria   – Hide quoted text — Show quoted text – Int Clin Psychopharmacol 1999 May;14 Suppl 2:S27-33 Serotonin reuptake inhibitors for the treatment of premenstrual dysphoria. Eriksson E Department of Pharmacology, Goteborg University, Sweden. Premenstrual dysphoria (PMD) is a severe form of premenstrual syndrome, afflicting approximately 5% of all women of fertile age. The cardinal symptoms are irritability and anger. In addition, sadness, tension and carbohydrate craving are common complaints. The symptoms surface regularly between ovulation and menstruation, and disappear completely within a few days after the onset of the bleeding; in patients with remaining symptoms during the follicular phase, alternative diagnoses should be considered. In a large number of recent trials, serotonin reuptake inhibitors (clomipramine, citalopram, fluoxetine, paroxetine, sertraline) have been shown to reduce the symptoms of PMD much more effectively than placebo; in contrast, non-serotonergic antidepressants (maprotiline, bupropion) appear to be ineffective. Interestingly, the onset of action of clomipramine and selective serotonin reuptake inhibitors (SSRIs) is much shorter when used for PMD than when used for depression, panic disorder, or obsessive-compulsive disorder. Consequently, patients with PMD can restrict the medication to the luteal phase of the cycle. In a recent placebo-controlled trial, intermittent administration of the SSRI citalopram was shown to reduce the symptoms of PMD significantly better than placebo, but also better than continuous administration of the drug. A reasonable interpretation of the latter, unexpected finding is that continuous medication may be associated with a certain development of tolerance than can be avoided by intermittent drug administration. The observation that the symptoms of PMD may be effectively reduced by SSRIs is of considerable clinical importance since previously no effective treatment for this common condition – apart from those disrupting ovarian cyclicity – has been available. It is also of theoretical importance because it constitutes one of the first pharmacological observations supporting the concept that serotonin may dampen irritability and anger in humans. PMID: 10471170, UI: 99397771

Response:

Int Clin Psychopharmacol 1999 May;14 Suppl 2:S27-33 Serotonin reuptake inhibitors for the treatment of premenstrual dysphoria. Eriksson E Department of Pharmacology, Goteborg University, Sweden. Premenstrual dysphoria (PMD) is a severe form of premenstrual syndrome, afflicting approximately 5% of all women of fertile age. The cardinal symptoms are irritability and anger. In addition, sadness, tension and carbohydrate craving are common complaints. The symptoms surface regularly between ovulation and menstruation, and disappear completely within a few days after the onset of the bleeding; in patients with remaining symptoms during the follicular phase, alternative diagnoses should be considered. In a large number of recent trials, serotonin reuptake inhibitors (clomipramine, citalopram, fluoxetine, paroxetine, sertraline) have been shown to reduce the symptoms of PMD much more effectively than placebo; in contrast, non-serotonergic antidepressants (maprotiline, bupropion) appear to be ineffective. Interestingly, the onset of action of clomipramine and selective serotonin reuptake inhibitors (SSRIs) is much shorter when used for PMD than when used for depression, panic disorder, or obsessive-compulsive disorder. Consequently, patients with PMD can restrict the medication to the luteal phase of the cycle. In a recent placebo-controlled trial, intermittent administration of the SSRI citalopram was shown to reduce the symptoms of PMD significantly better than placebo, but also better than continuous administration of the drug. A reasonable interpretation of the latter, unexpected finding is that continuous medication may be associated with a certain development of tolerance than can be avoided by intermittent drug administration. The observation that the symptoms of PMD may be effectively reduced by SSRIs is of considerable clinical importance since previously no effective treatment for this common condition – apart from those disrupting ovarian cyclicity – has been available. It is also of theoretical importance because it constitutes one of the first pharmacological observations supporting the concept that serotonin may dampen irritability and anger in humans. PMID: 10471170, UI: 99397771

Response:

its been documented that ssri’s and benzo’s blood plasma levels change when women ovulate and vice versa when they don’t-since you are changing your bodies ability to ovulate the plasma levels may drop somewhat-you may want to ask your doc to augment some benzo or ad meds with your next shot-medroxyprogesterone acetate is a known sensitizer of depression-you can just try and pamper yourself until the effects slough off LM

Margrove, you hit the nail on the head again.  I took extra celexa today, thinking at least it will do "something."    (I don’t think she’s gonna go for increasing my benzos, and I don’t want to ask her to), but I had a really nice nap, and feel better.   That is a very very very good idea.  I think I will increase my celexa during this time of the month.   It was a one time shot (depression is putting it mildly, I was thinking of ways to end my life).  It is still in my system, and I can feel the effects during this time of the month.   Thanks, Maria

Response:

- Hide quoted text — Show quoted text – Hi Maria, Being male, I can’t personally relate to PMS, but the hormonal character of panic disorder has given me some appreciation of the subject. Valerie Davis Raskin, MD, wrote a very good book titled, "When Words Are Not Enough; The Women’s Prescription for Depression and Anxiety." The book is not too expensive and written for the general public, so you may want to buy a copy via Amazon or some other book shop. It covers a lot of issues that are important to women who suffer from anxiety and depression. Best Wishes, Arthur

Thankyou for that information Arthur. I remember it being one of the trivia questions, but I didn’t know what it was about. Maria

Response:

its been documented that ssri’s and benzo’s blood plasma levels change when women ovulate and vice versa when they don’t-since you are changing your bodies ability to ovulate the plasma levels may drop somewhat-you may want to ask your doc to augment some benzo or ad meds with your next shot-medroxyprogesterone acetate is a known sensitizer of depression-you can just try and pamper yourself until the effects slough off LM

Response:

Maria – YIKES…..deprovera.  I’ve heard enough nightmare stories from my two daughters and my soon-to-be daughter-in-law.  All three have had unpleasant reactions to it and some very unpleasant effects getting off.

Hi Cindy,   For the first time since I got this shot, I feel that "someone understands." My face actually lit up while reading this. (not that they had to go through the horrid mess, but that I’m not alone).   It was a one time shot…..that was enough…it just about killed me.  (literally). Thankyou for the information!! Maria – Hide quoted text — Show quoted text – I can hardly keep my thoughts together today…..I’m not going in to work again today. ….and, when I called in, she tried to make me feel guilty.   It’s almost like my hormones override these medications.  I become overly sensitive, irritable, paranoid, fearful, anxious, restless…..just to name a few symptoms.  I know that stupid depo shot is still in my system.  I can feel it. I don’t have anything to grip on to, and this is a horrible feeling.  Maybe that’s why that show Greed kept my heart pounding last night.   I know this will go away in a few days, but what do I do in the meantime? I haven’t done a "pity party" post for awhile, so I guess it was overdue. My doc is out of town AGAIN for the weekend….. I feel like Sharyn today…..I just want to cry. ( Maria Maria – YIKES…..deprovera.  I’ve heard enough nightmare stories from my two daughters and my soon-to-be daughter-in-law.  All three have had unpleasant reactions to it and some very unpleasant effects getting off. It might be of some comfort to know that your emotional reaction to the provera in depovera is typical.  Also know that symptoms of normalizing can go on for 18mo to two years.  The progesterone in depovera is a chemically synthesized progestin, not natural hormone and SOME people are terribly sensitive to it. The good news is that although it’s EXTREMELY uncomfortable, kind of like your skin wants to walk off your body and your brain wants to escape, it DOES eventually go away. Some months you may find your own production of hormones will fluctuate and some months may be worse than others.   Other chemically synthesized birth control hormones can have the same effect and even when stopped it can take up to and longer than a year to normalize your natural horomes.   So you aren’t going crazy, it’s just the hormones talking and it WILL go away. for more information about what you, in your particular situation, can do to help yourself get right sooner…a book I highly recommend (easy read too)…. "Hormonal Health" Michael Colgan, MD. Hope this helps KC Cindy

Response:

: I can hardly keep my thoughts together today…..I’m not going in to work again : today. ….and, when I called in, she tried to make me feel guilty.   It’s : almost like my hormones override these medications.  I become overly sensitive, : irritable, paranoid, fearful, anxious, restless…..just to name a few : symptoms.  I know that stupid depo shot is still in my system.  I can feel it. : : I don’t have anything to grip on to, and this is a horrible feeling.  Maybe : that’s why that show Greed kept my heart pounding last night.   : I know this will go away in a few days, but what do I do in the meantime? : I haven’t done a "pity party" post for awhile, so I guess it was overdue.     : My doc is out of town AGAIN for the weekend….. : I feel like Sharyn today…..I just want to cry. : ( : Maria Hi Maria, Being male, I can’t personally relate to PMS, but the hormonal character of panic disorder has given me some appreciation of the subject. Valerie Davis Raskin, MD, wrote a very good book titled, "When Words Are Not Enough; The Women’s Prescription for Depression and Anxiety." The book is not too expensive and written for the general public, so you may want to buy a copy via Amazon or some other book shop. It covers a lot of issues that are important to women who suffer from anxiety and depression. Best Wishes, Arthur

Response:

- Hide quoted text — Show quoted text -I can hardly keep my thoughts together today…..I’m not going in to work again today. ….and, when I called in, she tried to make me feel guilty.   It’s almost like my hormones override these medications.  I become overly sensitive, irritable, paranoid, fearful, anxious, restless…..just to name a few symptoms.  I know that stupid depo shot is still in my system.  I can feel it. I don’t have anything to grip on to, and this is a horrible feeling.  Maybe that’s why that show Greed kept my heart pounding last night.   I know this will go away in a few days, but what do I do in the meantime? I haven’t done a "pity party" post for awhile, so I guess it was overdue. My doc is out of town AGAIN for the weekend….. I feel like Sharyn today…..I just want to cry. ( Maria

Maria – YIKES…..deprovera.  I’ve heard enough nightmare stories from my two daughters and my soon-to-be daughter-in-law.  All three have had unpleasant reactions to it and some very unpleasant effects getting off. It might be of some comfort to know that your emotional reaction to the provera in depovera is typical.  Also know that symptoms of normalizing can go on for 18mo to two years.  The progesterone in depovera is a chemically synthesized progestin, not natural hormone and SOME people are terribly sensitive to it. The good news is that although it’s EXTREMELY uncomfortable, kind of like your skin wants to walk off your body and your brain wants to escape, it DOES eventually go away. Some months you may find your own production of hormones will fluctuate and some months may be worse than others.   Other chemically synthesized birth control hormones can have the same effect and even when stopped it can take up to and longer than a year to normalize your natural horomes.   So you aren’t going crazy, it’s just the hormones talking and it WILL go away. for more information about what you, in your particular situation, can do to help yourself get right sooner…a book I highly recommend (easy read too)…. "Hormonal Health" Michael Colgan, MD. Hope this helps KC Cindy

Response:

Question:

First day on 150 milligrams, down from 225 around a week ago.

I don’t know, RGB…just be careful cuz I personally had a horrible time withdrawing from Effexor when I got down to the very minute doses.  I don’t know if you are going off it completely or not but just a kind of FYI that the wierd, electrical fuzzy feeling didn’t start until I was to a 1/4 a tablet a day.   Nik "I want to believe"……The X-Files ICQ # 7859124

Response:

Oh, it gets better, RGB. Just wait for the bedspins, brain shivers, and nausea. — For more information about this service, send e-mail to:

Response:

Oh, it gets better, RGB. Just wait for the bedspins, brain shivers, and nausea.

Bedspins? My bed was thumping like in the Exorcist. And I had Florida lightning storms between my ears and throughout my body. And nausea so bad I had to live on formula. Damn stuff works so well for so many and was such poison to me. Hey, this is a clue. Effexor is an SNRI isn’t it? — bev ~~~ veb ~~~~~~ vaj ~~~ http://members.tripod.com/~Veb

Response:

Oh, it gets better, RGB. Just wait for the bedspins, brain shivers, and nausea. Bedspins? My bed was thumping like in the Exorcist. And I had Florida lightning storms between my ears and throughout my body. And nausea so bad I had to live on formula. Damn stuff works so well for so many and was such poison to me. Hey, this is a clue. Effexor is an SNRI isn’t it?

Yes, it’s an SNRI. I dropped from 375 mg to 300 mg a couple of weeks ago.  I thought the electric stuff was gone, but it keeps coming back – right down my arms and legs.  I hate the feeling.  Is this common? The good news is…I’m much more orgasmic.  The bad news is…there’s nobody but me to provide the orgasms.  <sigh Bluebird

Response:

 I kinda liked the electric feeling thing tho.  It’d hit me as a ZOOM thru my head.  Weird but neat. charlie

I HATED this feeling!  I get nauseous just thinking about it. It’s me glad to finally be off the stuff! — For more information about this service, send e-mail to:

Response:

 Sexual desire *  * I like this one.

Does this mean your cute little pet is in danger? Stuck

Response:

RGB, Wait for the delayed orgasms. I was a 45 year old woman having "wet dreams" like a 13 year old boy. This happened BOTH times I came off (and I do mean "came") off Effexor. LynnCGiff Somedays you’re the pigeon, somedays you’re the statue. Lynn from North Dakota

Response:

First day on 150 milligrams, down from 225 around a week ago.

Got off Effexor (which did nothing for me) awhile back.  My shrink did NOT prepare me for the withdrawal effects.  I had horrendous panic attacks and insomnia.  Frantic calls to the Doc. got me something (?) that calmed me down as I made the transition to Prozac.  (which also doesn’t do much for me.)  I kinda liked the electric feeling thing tho.  It’d hit me as a ZOOM thru my head.  Weird but neat. charlie

Response:

What’s a "Brain Shiver" ?!? entropy Well, they’re hard to describe to someone who hasn’t had the experience. They’re kind of like dizziness, but not quite the same thing.  The best description I’ve heard is that it feels like your brain is loose inside your head, and when you moved your head, it rattles around.  Really, it’s a horrible feeling.

Oh my goodness, is that what it’s called? I got that when I was on both Paxil and Neurotonin, and I was in the emergency room twice for it. No one had a clue what I was talking about. Wish I had heard of this a few months ago. . .  :-p –Christine — "America’s health care system is second only to Japan… Canada, Sweeden, Great Britain, … well all of Europe. But you can thank your lucky stars we don’t live in Paraguay!"                 –Homer Simpson

Response:

  What’s a "Brain Shiver" ?!? It’s not a technical term, just something we on asd have shared enough info about, that the phenomenon developed a name.  I doubt shrinks call ‘em "brain shivers"  In fact, most pdocs don’t seem to know anything about ‘em!! Sounds to me like a sudden burst of dizziness, and God knows I’ve had those.

For me, there’s an element of dizziness, but it’s more like a jolt of electricity that starts at the back of my head and zaps down my neck to my fingers and toes.  I hate them – but I like Effexor, so I’ve got to live with them.  The worst ones are the dizzying ones that make me feel as if I’m going to pass out.  I had one of those at the mall, and I had to hide it from my kids. Bluebird

Response:

  What’s a "Brain Shiver" ?!? Oh my goodness, is that what it’s called? I got that when I was on both Paxil and Neurotonin, and I was in the emergency room twice for it. No one had a clue what I was talking about. Wish I had heard of this a few months ago. . .  :-p –Christine

It’s not a technical term, just something we on asd have shared enough info about, that the phenomenon developed a name.  I doubt shrinks call ‘em "brain shivers"  In fact, most pdocs don’t seem to know anything about ‘em!! — For more information about this service, send e-mail to:

Response:

When I went thru EFXR withdrawal, I had "brain shivers" too. It was like if I turned my head suddenly it would take my brain a second to catch up. Then my brain would kind of bounce around in my skull for a few seconds. Not painful but really annoying and disorienting. Not unlike that "elevator thing" but confined to my head. Lynn

Response:

Oooh, yes, I get that when I miss my zoloft for even a day. I went to visit a friend a few weeks ago and i brought the wrong medicine bottle (I keep aspririn in the used ones), so I missed it for 3 days and on the walk home, my legs kept jerking with the brain shocks, made it very hard to walk. e

: When I went thru EFXR withdrawal, I had "brain shivers" too. : It was like if I turned my head suddenly it would take my brain a second to : catch up. Then my brain would kind of bounce around in my skull for a few : seconds. Not painful but really annoying and disorienting. Not unlike that : "elevator thing" but confined to my head. : Lynn — 101011110100010101010000101110100101010101010010100010011111101010100100001 0100         This .signature sold by weight, not by volume.       Some settling of contents may occur during shipping.

Response:

Yuck. I missed just *2 days of 75mgs a day*, and I thought I was going to die from the withdrawl symptoms. It wouldn’t have been as bad if I hadn’t have had to go to class that day. First day on 150 milligrams, down from 225 around a week ago. I don’t know, RGB…just be careful cuz I personally had a horrible time withdrawing from Effexor when I got down to the very minute doses.  I don’t know if you are going off it completely or not but just a kind of FYI that the wierd, electrical fuzzy feeling didn’t start until I was to a 1/4 a tablet a day. Nik

–Christine — "America’s health care system is second only to Japan… Canada, Sweeden, Great Britain, … well all of Europe. But you can thank your lucky stars we don’t live in Paraguay!"                 –Homer Simpson

Response:

 I kinda liked the electric feeling thing tho.  It’d hit me as a ZOOM thru my head.  Weird but neat. charlie I HATED this feeling!  I get nauseous just thinking about it. It’s me glad to finally be off the stuff!

hi .. first of all im battling this withdrawal thing too..i’ve gone to the end of a prescription and not refill and miss a day and it’s as if my systems shut down after that…… this BRAIN SHIVER that many refer to is a buzzing numbing sensation in the back and top of my skull….. i have definitely related the fact that excessive eye movement or quick attempts to focus cause it to FIRE… i can only imagine how REM sleep affects you… you can only regulate your eye movement so much though.. it is indeed a sickening feeling.. i am down to 50mg per day once a day… i only take the medicine the first BRAIN SHIVER of the day.. so as to hold off as long as possible til next dosage.. i am gonna wait til i can half my way to nothing.. im sick of this drug it makes me feel like a computer with corrupt RAM.. anyway.. i have also been supplimenting my diet with GINSENG, GOTU KOLA (for memory), and ST. JOHN’S WORT.. as long as im trying to get off the drug that supposedly makes me feel better, i might as well take something natural to increase those reuptake zones.  i haven’t noticed any true physical withdrawal .. only the brain feeling and the fact that that causes you to feel like shit everywhere else.. so everything is mental haywire.  the only other time in life when i’ve felt this brain shiver thing was when i was EXTREMEMLY pissed off and irate… the kind of mad you only get every blue moon.. and that buzzing sensation occurs… i remember it.  good luck everyone with your struggle. eliot

Response:

What’s a "Brain Shiver" ?!?

A sensation that seems to localized in your brain and can feel like a anything from a shiver to a lightning storm. It can hurt. Similar sensations can occur in other parts of the nervous system. I think the physicians and scientists are baffled. or they think we’re nuts. — bev ~~~ veb ~~~~~~ vaj ~~~ http://members.tripod.com/~Veb

Response:

What’s a "Brain Shiver" ?!? entropy

You know that feeling when you shiver that it starts in one place and goes up (or down) the rest of your body?  Well it’s kind of like that but through your head.  At least that was my experience. I completely was unprepared for the withdrawal effects of Effexor and told my doc that he should be sure to let people know what to expect before taking them off.  I would never go thru that again!! "I want to believe"……The X-Files ICQ # 7859124

Response:

What’s a "Brain Shiver" ?!? entropy

Well, they’re hard to describe to someone who hasn’t had the experience.   They’re kind of like dizziness, but not quite the same thing.  The best description I’ve heard is that it feels like your brain is loose inside your head, and when you moved your head, it rattles around.  Really, it’s a horrible feeling.   — For more information about this service, send e-mail to:

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What’s a "Brain Shiver" ?!? entropy – Hide quoted text — Show quoted text – Oh, it gets better, RGB. Just wait for the bedspins, brain shivers, and nausea. — For more information about this service, send e-mail to:

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Yes, it’s an SNRI.

Norepinephrine then, I had trouble with too much of that maybe. I dropped from 375 mg to 300 mg a couple of weeks ago.  I thought the electric stuff was gone, but it keeps coming back – right down my arms and legs.  I hate the feeling.  Is this common?

No, just extremely disturbing. Effexor is actually one of the drugs with low incidence of side effects – few people getting them. I only personally know three people who’ve taken it. The other two had no problem at all, stuff worked fine, one even quit cold-turkey. I went through hell. The good news is…I’m much more orgasmic.  The bad news is…there’s nobody but me to provide the orgasms.  <sigh

Oh well. — bev ~~~ veb ~~~~~~ vaj ~~~ http://members.tripod.com/~Veb

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Question:

John, Not to be too dysphoric but some of us litle ole bipolars are smart enough to know the difference between depression and a CNS depressant. Amazing tho that may seem.

From the evidence of my eyes and memory, a lot of depressed people don’t. The information is probably news to someone reading it, old hat though it was to you. —          The opinions given above may be mine. They might also            just be what I feel like saying right now, okay?

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Can anyone tell me what the dangers are of taking Zoloft and alcohol together?  Is it just that the Zoloft may not be affective, or are there physical dangers? Well, Zoloft is an antidepressant. Alcohol is a CNS depressant. Your call. Danny

It is possible to have seizures and also strokes when combining alcohol and zoloft. TheDelser

Response:

: OUCH! nothing more to say…;) : I’ve taken Zoloft for 3 years and drank for 3+ years.  Zoloft has helped, and has been therapeutic.  I no longer take Zoloft, but I still have my beers. will

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Ahcohol is a depressant, no matter what else you think about how good it  makes you feel. It interferes with you Zoloft. Carma – Hide quoted text — Show quoted text – Can anyone tell me what the dangers are of taking Zoloft and alcohol together?  Is it just that the Zoloft may not be affective, or are there physical dangers?

Response:

Excellent response. I really wish someone had given me this advice before I got into it. SNIP Many to totally stupid and embarassing  things in public.

That would be me. This may get you taked about but not in a light you would like.

And how. The danger is that you don’t know what will happen.  For damn sure don’t have to plan on driving.  I went into a corn field one night on two Vodka martinis, sound asleep at the wheel.  They check for the level and it was only .15.  But the combination of that and my BP pills knocked my but out.

Okay, are you sure you mean .15? Legally drunk is .10, you know… Just checking. G. – Hide quoted text — Show quoted text -SNIP

Response:

Can anyone tell me what the dangers are of taking Zoloft and alcohol together?  Is it just that the Zoloft may not be affective, or are there physical dangers?

Zoloft (sertraline) is an antidepressant; alcohol is a central nervous system depressant, so the expectation would likely be that drinking while depressed would not be helpful to recovery. This is not to say that an occasional sip of alcohol would hurt, but it is always wise to speak with your own physician about these drinking while on psychiatric medications. I no longer drink while taking medications. I used to. Didn’t help at all to drink, in fact made it worse, so I quit. -jim

Response:

Can anyone tell me what the dangers are of taking Zoloft and alcohol together?  Is it just that the Zoloft may not be affective, or are there physical dangers?

Response:

: Ahcohol is a depressant, no matter what else you think about how good : it  makes you feel. It interferes with you Zoloft.       The term "depressant", when used in reference to alcohol, means that it slows you down, NOT that it causes the condition known as "depression". Alcohol *CAN* be dangerous with zoloft; it can make you MUCH drowsier/drunker than you expect, and long term alcohol use *CAN* cause depression (not because it’s a "depressant", but because of other changes that heavy use of alcohol causes in your body)      But light drinking is fairly safe.  The reason you’re told to avoid alcohol on zoloft is because you don’t have carte blanche freedom to drink as much as you want.

Response:

Hi all,  I’d like to mention an additional danger besides the one listed. Zoloft (as do ALL antidepressants) tends to lower the seizure threshold (i.e. make it easier to have a seizure) as does alcohol.  For most people this might not be a problem, but if you’re borderline seizure oriented, or especially overtired, be VERY careful of this combination.  I’d remind people as well, that this being cough/cold season, LIQUID nyquil is 50 proof or 25% alcohol.  Email welcome.  John Abeel — John Abeel, R.P.H. http://www.servtech.com/public/rxman " He who hath no scruples isn’t worth a dram " – Hide quoted text — Show quoted text – : John, : Not to be too dysphoric but some of us litle ole bipolars are smart : enough to know the difference between depression and a CNS depressant. : Amazing tho that may seem.      Why, then, didn’t you use the term "depressant" correctly in the following post that you made? : : Ahcohol is a depressant, no matter what else you think about how good : : it  makes you feel. It interferes with you Zoloft.

Response:

While on ADs, the effects of alcohol on my system are unpredictable. I

The effects of alcohol on bipolar people, on AD or not, is unpredictable. |Home page:http://reality.sgi.com/employees/chokshi_clubfed/ |Silicon Graphics, Inc., voice: (301) 572-1678, fax: (301) 572-8778 |—Mortal, why doth thou live like thou art immortal?

Response:

Can anyone tell me what the dangers are of taking Zoloft and alcohol together?  Is it just that the Zoloft may not be affective, or are there physical dangers?

Well, Zoloft is an antidepressant. Alcohol is a CNS depressant. Your call. Danny

Response:

: It is possible to have seizures and also strokes when combining alcohol : and zoloft.      Strangely, this is NOT mentioned in any of the literature on zoloft. Care to substantiate this claim, oh ignoble bullshitter?

Response:

John, Not to be too dysphoric but some of us litle ole bipolars are smart enough to know the difference between depression and a CNS depressant. Amazing tho that may seem. Carma – Hide quoted text — Show quoted text – : Ahcohol is a depressant, no matter what else you think about how good : it  makes you feel. It interferes with you Zoloft.       The term "depressant", when used in reference to alcohol, means that it slows you down, NOT that it causes the condition known as "depression". Alcohol *CAN* be dangerous with zoloft; it can make you MUCH drowsier/drunker than you expect, and long term alcohol use *CAN* cause depression (not because it’s a "depressant", but because of other changes that heavy use of alcohol causes in your body)      But light drinking is fairly safe.  The reason you’re told to avoid alcohol on zoloft is because you don’t have carte blanche freedom to drink as much as you want.

Response:

Well let’s see perhaps it is just I’ve been studying the wrong books but the last time I checked all forms of ETOH were listed as major central nervous system depressants and the formula 1 CNSD + 1 CNSD still looks like too drugged to cogitate properly let alone breath. – Hide quoted text — Show quoted text – : John, : Not to be too dysphoric but some of us litle ole bipolars are smart : enough to know the difference between depression and a CNS depressant. : Amazing tho that may seem.      Why, then, didn’t you use the term "depressant" correctly in the following post that you made? : : Ahcohol is a depressant, no matter what else you think about how good : : it  makes you feel. It interferes with you Zoloft.

Response:

: John, : Not to be too dysphoric but some of us litle ole bipolars are smart : enough to know the difference between depression and a CNS depressant. : Amazing tho that may seem.      Why, then, didn’t you use the term "depressant" correctly in the following post that you made? : : Ahcohol is a depressant, no matter what else you think about how good : : it  makes you feel. It interferes with you Zoloft.

Response:

OUCH! nothing more to say…;)

Response:

Zoloft affects Serotonin, while alcohol affects GABA transmission and recption.  Unless there’s effects we’re not aware of.

Response:

Can anyone tell me what the dangers are of taking Zoloft and alcohol together?  Is it just that the Zoloft may not be affective, or are there physical dangers?

You may get drunk a LOT faster. Then again, you may not. Charlie’s Sneaker Pages: http://sneakers.pair.com/ Best Value in Airplanes: http://www.boeing.com/

Response:

Question:

- Hide quoted text — Show quoted text – Hi All, Yikes!!!  Yesterday I was ‘locked out’ of newsgroup because of some stuff Worldnet was doing with the Usenet so I am very far behind. I spoke with a woman in Idaho yesterday who wants to write a grant to Albertson’s (a food chain).  Apparently they fund stuff for kids with illnesses.  I was thinking that there must be some kids with generalized who need equipment of some type (ie computers, wheelchairs, etc). Christine needs numbers of kids affected by ITD, numbers from a quotable source.  Also some specifics on what kids might need.  Christine is an adult with torticollis so her knowledge is limited regarding ITD.  I told her I would try to get back to her on Thursday Oct 3rd…thinking I could post yesterday. Anyhow, your expertise would be much appreciated!! Thanks, MBValerie Kinch has a questionnaire on the WWW page and Bob Campbell might be able to help in getting some numbers put together. There is nothing in the literature that gives a number. The only possibility is maybe extrapolating ITD by contacting Chicago getting a percentage and applying it to 300,000 people. I would also contact Mike [of Jeff Harris who has disappeared, why?] and asking for input. Also get your hands on 8 to 18.

Hi Larry, I have 8-18.  I will contact Michael (don’t know what happened to him!). Christine already spoke to Chicago, however she was so vague with them that I am sure that is why they couldn’t help her.  I had to be pretty pushy on the phone just to center her on one topic and I find it hard to be pushy (believe it or not).  TY for the input! MB

Response:

- Hide quoted text — Show quoted text – Hi All, Yikes!!!  Yesterday I was ‘locked out’ of newsgroup because of some stuff Worldnet was doing with the Usenet so I am very far behind. I spoke with a woman in Idaho yesterday who wants to write a grant to Albertson’s (a food chain).  Apparently they fund stuff for kids with illnesses.  I was thinking that there must be some kids with generalized who need equipment of some type (ie computers, wheelchairs, etc). Christine needs numbers of kids affected by ITD, numbers from a quotable source.  Also some specifics on what kids might need.  Christine is an adult with torticollis so her knowledge is limited regarding ITD.  I told her I would try to get back to her on Thursday Oct 3rd…thinking I could post yesterday. Anyhow, your expertise would be much appreciated!! Thanks, MBValerie Kinch has a questionnaire on the WWW page and Bob Campbell might

be able to help in getting some numbers put together. There is nothing in the literature that gives a number. The only possibility is maybe extrapolating ITD by contacting Chicago getting a percentage and applying it to 300,000 people. I would also contact Mike [of Jeff Harris who has disappeared, why?] and asking for input. Also get your hands on 8 to 18.

Response:

Hi All, Yikes!!!  Yesterday I was ‘locked out’ of newsgroup because of some stuff Worldnet was doing with the Usenet so I am very far behind. I spoke with a woman in Idaho yesterday who wants to write a grant to Albertson’s (a food chain).  Apparently they fund stuff for kids with illnesses.  I was thinking that there must be some kids with generalized who need equipment of some type (ie computers, wheelchairs, etc).   Christine needs numbers of kids affected by ITD, numbers from a quotable source.  Also some specifics on what kids might need.  Christine is an adult with torticollis so her knowledge is limited regarding ITD.  I told her I would try to get back to her on Thursday Oct 3rd…thinking I could post yesterday. Anyhow, your expertise would be much appreciated!! Thanks, MB

Response:

- Hide quoted text — Show quoted text – Hi All, Yikes!!!  Yesterday I was ‘locked out’ of newsgroup because of some stuff Worldnet was doing with the Usenet so I am very far behind. I spoke with a woman in Idaho yesterday who wants to write a grant to Albertson’s (a food chain).  Apparently they fund stuff for kids with illnesses.  I was thinking that there must be some kids with generalized who need equipment of some type (ie computers, wheelchairs, etc). Christine needs numbers of kids affected by ITD, numbers from a quotable source.  Also some specifics on what kids might need.  Christine is an adult with torticollis so her knowledge is limited regarding ITD.  I told her I would try to get back to her on Thursday Oct 3rd…thinking I could post yesterday. Anyhow, your expertise would be much appreciated!! Thanks, MBValerie Kinch has a questionnaire on the WWW page and Bob Campbell might be able to help in getting some numbers put together. There is nothing in the literature that gives a number. The only possibility is maybe extrapolating ITD by contacting Chicago getting a percentage and applying it to 300,000 people. I would also contact Mike [of Jeff Harris who has disappeared, why?] and asking for input. Also get your hands on 8 to 18.

I’m here, Larry – just been busy so my posts have been few and far between.  Michael has not been "on line" for a while, but it you have anything for him send it to me and I’ll pass it along.  (BTW, MEDICALLY he’s been doing VERY well.  Today was a "spasmy" day, but on Rosh Hashana he STOOD on the Bima and helped lead the prayers in Junior Congregation!  (His Bar Mitzvah is a year away). As far as statistics, neither he nor I would have anything.  The best person I can think of for extrapolating numbers might be Debbie DeLeon.  I’m sure in doing the genetic models she must have percentages.  The other person who might have something would be Ron Cabay, the Childrens Advocacy leader. Jeff H.

Response:

- Hide quoted text — Show quoted text – Hi All, Yikes!!!  Yesterday I was ‘locked out’ of newsgroup because of some stuff Worldnet was doing with the Usenet so I am very far behind. I spoke with a woman in Idaho yesterday who wants to write a grant to Albertson’s (a food chain).  Apparently they fund stuff for kids with illnesses.  I was thinking that there must be some kids with generalized who need equipment of some type (ie computers, wheelchairs, etc). Christine needs numbers of kids affected by ITD, numbers from a quotable source.  Also some specifics on what kids might need.  Christine is an adult with torticollis so her knowledge is limited regarding ITD.  I told her I would try to get back to her on Thursday Oct 3rd…thinking I could post yesterday. Anyhow, your expertise would be much appreciated!! Thanks, MBValerie Kinch has a questionnaire on the WWW page and Bob Campbell might be able to help in getting some numbers put together. There is nothing in the literature that gives a number. The only possibility is maybe extrapolating ITD by contacting Chicago getting a percentage and applying it to 300,000 people. I would also contact Mike [of Jeff Harris who has disappeared, why?] and asking for input. Also get your hands on 8 to 18. Hi Larry, I have 8-18.  I will contact Michael (don’t know what happened to him!). Christine already spoke to Chicago, however she was so vague with them that I am sure that is why they couldn’t help her.  I had to be pretty pushy on the phone just to center her on one topic and I find it hard to be pushy (believe it or not).  TY for the input! MB

How about writing the NIH? Nationa Institute of Neuro Disorders and Stroke Building 10,  Room 5N226 10 CENTER DR. MISC 1428 BETHESDA MD 20892-1428 Phone (301)496-1561  (before 8 AM in CA it’s cheap and good time to get them back East.

Response:

It is a horrible feeling of extreme isolation when looked out of this news group.  I understand how you felt.   I’m so glad your fund-raising dinner went well.  Good Job!  And to top it off, you were able to spend som quality time with Jennifer.   Now, to your needed suggestions.  Somewhere in the archieves for this newsgroup, I remember reading about one of the children with ITD needing voice activated software, like Dragon Dictate.  It is a wonderful program for someone who has limited mobility using their arms, hands, and shoulder area.  I have the program, because for a while I could barely use my right arm and hand.  It is very easy for a non-computer literate person to learn to use. (More complicated for us old-timers who are stuck in our ways.) It runs with most windows based programs, so a child would have access to programs for doing their homework as well as playing a few games.  It runs about $500 to $600 for a start-up set of disks, which has a smaller dictionary.  The dictionary would be adequate for most grade school and high school students.  The program can be added to, if the child decided to attend college and needed a larger vocabulary.  I believe there is only the PC version available, but checking with Dragon Dictate would clarify whether or not there is a Mac version.  I believe it is useable on laptops with enough memory installed, so a child could use it both at school and home.  Information can be obtained from Dragon Systems, Inc., 320 Nevada Street, Newton, MA 02160, Tel (617) 965-5200, Fax (617) 527-0372. Hope this helps. Sherrie

Response:

- Hide quoted text — Show quoted text – It is a horrible feeling of extreme isolation when looked out of this news group.  I understand how you felt.   I’m so glad your fund-raising dinner went well.  Good Job!  And to top it off, you were able to spend som quality time with Jennifer.   Now, to your needed suggestions.  Somewhere in the archieves for this newsgroup, I remember reading about one of the children with ITD needing voice activated software, like Dragon Dictate.  It is a wonderful program for someone who has limited mobility using their arms, hands, and shoulder area.  I have the program, because for a while I could barely use my right arm and hand.  It is very easy for a non-computer literate person to learn to use. (More complicated for us old-timers who are stuck in our ways.) It runs with most windows based programs, so a child would have access to programs for doing their homework as well as playing a few games.  It runs about $500 to $600 for a start-up set of disks, which has a smaller dictionary.  The dictionary would be adequate for most grade school and high school students.  The program can be added to, if the child decided to attend college and needed a larger vocabulary.  I believe there is only the PC version available, but checking with Dragon Dictate would clarify whether or not there is a Mac version.  I believe it is useable on laptops with enough memory installed, so a child could use it both at school and home.  Information can be obtained from Dragon Systems, Inc., 320 Nevada Street, Newton, MA 02160, Tel (617) 965-5200, Fax (617) 527-0372. Hope this helps. Sherrie

Thanks so much, Sherrie!!  I am supposed to phone Chris today and I will most definitely give her this info.  I also remember that topic, now that you have jogged my memory…it gets harder and harder, the older one becomes <<VBG I really enjoyed the time with Jennifer…she is such a doll.  I refuse to use the word ’success’ yet in describing the event.  Perhaps in time and with some perspective, my attitude will change.  Right now I desparately need a ‘holiday from dystonia’. Take care, sweetheart! MB

Response:

Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed.

Hi, Ador.  I’m a parent – not a patient – and Michael is only 12, so my answer to your survey wouldn’t be meaningful; but a couple of suggestions: Plan A – Ways you might keep your license: 1) Contact the Independent Living Center in your area.  There are driving programs/drivers ed programs especially designed for people with disabilities ("PWD") , and also specialized equipment that enables many PWD to operate a vehicle safely.  This training might convince your doctor; OR maybe they know a doctor who is more sensitive on the issues. 2) Discuss this with your Movement Disorder neurologist – NOT your primary care physician.   3) Contact some of the dealers of Adapted Vehicles and Equipment for suggestions. Keep in touch!  Maybe we can come up with other ideas LOL– Jeff H.

Response:

Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed.

Ador, I am hearing your ‘fear’ of becoming dependent, rather than remaining independent.  I am concerned.  I have generalized dystonia and must use a walker to get around, but I have driven for years with no questions from doctors or our CA Motor Vehicle Dept.  You have lingual dystonia, isn’t that right?  Does it impair your ability to drive?  I cannot quite visualize that…please help us understand so that we can help, OK?  We are HERE for you, Ador!  Please talk with us, OK? Love, MB

Response:

Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed.

Response:

Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed.

(emailed as well as posted) Hi Ador: Yes, I still drive.  I have ST.  I also have panic disorder with severe depressive episodes and Essential Tremor.  So I shake like a leaf most of the time and my head nid-nods, panic attacks can be *hell* and sometimes I can slide into a big, black hole of depresssion.  And if someone even *hinted* that I should lose my license because of any or all of that, you would hear the explosion all the way from BC Canada!  ): That depression is probably our worst enemy, because it just takes away the energy to enjoy anything and turns everything grey.  But it’s part of our being affected with disabling disorders you know.  Everything I’ve read says that we have to be aware that this can strike at us, my specialist says the same thing. PLEASE take steps to get some treatment for your depression ASAP.  It makes all the difference, I promise you.  Ask your specialist or your MD to refer you to a specialist in mood disorders so that you can get the help you need.  I know it’s hellish, but it’s a *symptom* and not a true emotion of the real you.  You need to hang on to that Ador, the depression is a symptom and can be cured – the way it makes you feel is not really you at all. As far as the license goes, a primare care physician is not capable of making that kind of decision.  Only a specialist in dystonia can do so.  Fight off that depression, pick up the phone and call a lawyer (Legal Aide if necessary) if you have to.  But FIRST get the appointment arranged for help with the depression. THEN do battle with the bureaucrats if you have to, you’ll more than likely be helping someone else who is unable to take on that battle who has run into the same discrimination.  Put on that red suit with the big yellow S on it!  :)  And after you read this, go subscribe to alt.support.depression – some wonderful, *caring* people there. Hope that helps a little.  Give ‘em HELL Ador. Mally  :)  (Who hopes Ador will not be offended by Mally in a bossy mood…who gets that way when she’s worried about someone.)

Response:

Hi Ador: I just had to stick my two cents in here.  I have two friends who come to mind when I read your posting.  One has CP, very bad spasms all the time, and this coupled with the fact that she’s now 73 years old.  The other was a Thalidamide (sp) baby, she’s now 46, has no arms nor legs. Both are still driving.  They didn’t have to get permission from their doctors or have them vouch for them.  This is in Texas so I don’t know about other states – but both took the driver’s test – both drive specially equiped vehicles – and drive under handicapped license plates. They had no problems as long as they could pass the exam. I know it is a major adjustment when we loose our ability to do things that we used to do – and I might add – took for granted – at least I certainly did.  And of course in the case of ones ability to get in their car and go when they want to would be hard to give up.  I understand that – I watched this happen with my father.  But Ador, he had to ask himself and be honest with himself on the answer of "Was he still able to drive safely".  Hard question for one to answer and be honest about it as it was (for him) letting go of his independence in having his own car, etc.  I’m not saying that you’re in this situation but it’s something to think about for all of us as we age, loose eyesight, whatever. Have you checked with your states requirements on this and if you were able to pass a drivers test would you have to get a doctors voucher? What about contacting your states organization for people with disabilities – I am sure they have one – I know this thought is depressing to you.  It would be to anyone – BUT – you can overcome this obsticle – do some research on it – Mally had a great point that a primary physician really doesn’t know the ins and outs of dystnia – mine only knows what I’ve told him – You’ve got a world of folks out here who you don’t even know Ador and we’re all pulling for you.  Hang in there and explore other avenues – you never know what your going to find around that corner. Good luck and big hugs from South Texas – Anne Here in San Antonio, we have wonderful bus services for people with disabilities.  It is a blessing for those who either can’t drive anymore or who never drove. – Hide quoted text — Show quoted text – Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed. (emailed as well as posted) Hi Ador: Yes, I still drive.  I have ST.  I also have panic disorder with severe depressive episodes and Essential Tremor.  So I shake like a leaf most of the time and my head nid-nods, panic attacks can be *hell* and sometimes I can slide into a big, black hole of depresssion.  And if someone even *hinted* that I should lose my license because of any or all of that, you would hear the explosion all the way from BC Canada!  ): That depression is probably our worst enemy, because it just takes away the energy to enjoy anything and turns everything grey.  But it’s part of our being affected with disabling disorders you know.  Everything I’ve read says that we have to be aware that this can strike at us, my specialist says the same thing. PLEASE take steps to get some treatment for your depression ASAP.  It makes all the difference, I promise you.  Ask your specialist or your MD to refer you to a specialist in mood disorders so that you can get the help you need.  I know it’s hellish, but it’s a *symptom* and not a true emotion of the real you.  You need to hang on to that Ador, the depression is a symptom and can be cured – the way it makes you feel is not really you at all. As far as the license goes, a primare care physician is not capable of making that kind of decision.  Only a specialist in dystonia can do so.  Fight off that depression, pick up the phone and call a lawyer (Legal Aide if necessary) if you have to.  But FIRST get the appointment arranged for help with the depression. THEN do battle with the bureaucrats if you have to, you’ll more than likely be helping someone else who is unable to take on that battle who has run into the same discrimination.  Put on that red suit with the big yellow S on it!  :)  And after you read this, go subscribe to alt.support.depression – some wonderful, *caring* people there. Hope that helps a little.  Give ‘em HELL Ador. Mally  :)  (Who hopes Ador will not be offended by Mally in a bossy mood…who gets that way when she’s worried about someone.)

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– Hide quoted text — Show quoted text – Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed. (emailed as well as posted) Hi Ador: Yes, I still drive.  I have ST.  I also have panic disorder with severe depressive episodes and Essential Tremor.  So I shake like a leaf most of the time and my head nid-nods, panic attacks can be *hell* and sometimes I can slide into a big, black hole of depresssion.  And if someone even *hinted* that I should lose my license because of any or all of that, you would hear the explosion all the way from BC Canada!  ): That depression is probably our worst enemy, because it just takes away the energy to enjoy anything and turns everything grey.  But it’s part of our being affected with disabling disorders you know.  Everything I’ve read says that we have to be aware that this can strike at us, my specialist says the same thing. PLEASE take steps to get some treatment for your depression ASAP.  It makes all the difference, I promise you.  Ask your specialist or your MD to refer you to a specialist in mood disorders so that you can get the help you need.  I know it’s hellish, but it’s a *symptom* and not a true emotion of the real you.  You need to hang on to that Ador, the depression is a symptom and can be cured – the way it makes you feel is not really you at all. As far as the license goes, a primare care physician is not capable of making that kind of decision.  Only a specialist in dystonia can do so.  Fight off that depression, pick up the phone and call a lawyer (Legal Aide if necessary) if you have to.  But FIRST get the appointment arranged for help with the depression. THEN do battle with the bureaucrats if you have to, you’ll more than likely be helping someone else who is unable to take on that battle who has run into the same discrimination.  Put on that red suit with the big yellow S on it!  :)  And after you read this, go subscribe to alt.support.depression – some wonderful, *caring* people there. Hope that helps a little.  Give ‘em HELL Ador. Mally  :)  (Who hopes Ador will not be offended by Mally in a bossy mood…who gets that way when she’s worried about someone.)

Blessings Mally MB

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Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed.

Hi Ador. I suppose your GP is afraid of your leg dystonia.  I wouldn’t take his word. I have lingual dystonia but I also react with a wild general myoconic motions in all parts of m body when a certain sound is heard.  If first happened on an evoked potential test, then on MRI and sometimes it happens listening to music, altho on that if I can get to the raido soon enough no lasting harm done. Howeverer I insisted on showing my present Neuro what happens on the sound of the Evoked Potentials.  He knows other sounds d it too but he hasnever pulled my license. Suggest you go on your neuro’s decission. Catherine

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Hi! This is an informal survey of who among us Dystonia sufferers are still driving and who were forced to surrender their driver’s license. Please answer the following questions  truthfully: 1) Do you still drive despite your dystonia?   Yes            No 2) What type of dystonia do you have? 3) Did anyone of you lose your driver’s license because of your illness, dystonia? 4) To those who lost their license, were you able to get one again? I am making this informal survey because I am about to lose my license simply because my primary physician or any physician I know does not want to vouch for me that I am "medically and physically able to drive a motor vehicle safely? I don’t know what I will do without a driver’s license. I am very depressed.

Hi, The answer to question #1 isn’t applicable to me as I never had a driver’s lincense, and I’m 55 yrs old.  I did take driving lessons a couple of yrs ago — and I was doing quite well with the instructor I had, but unfortunately he quit his job just as I was gaining self-confidence…  I didn’t do anything to him for him to quit the job…  <g.  So, I never pursued my ‘dream’ for a driver’s lincense after this episode.  I could have gone to my state’s (Maryland) rehab center for driving lesons — I tried it once, but didn’t like the "snob" of instructor that was doing the teaching…  This brings to mind a question you — have u looked into your state’s rehab center — they could retrian you?  Why not write a letter to your congressman and see what he/she could do for you in issueing another driver’s license?  I know the feeling fof rejection.  You aren’t alone in this… The answer to question #2:  I have cerebral palsy  and generalized dystonia .  I can do anything I make up my mind to do.  If I want to do something — nothing stands in my way!  So, if you’re about to lose your license — why don’t ‘fight’ for it?  I have to fight for eveything I want — that’s the way the ball bounces.  I wished I didn’t have to fight for everything, but I do — to keep above board…  :-) Sorry, I can’t answer questions 3 & 4. There, I’ve said my 2 cents worth!  I *love* surveys!!… Cheerio, Becky

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Mally, bless you for the caring response to Ador about  her license and depression.  You said it all!! (I am on AOL and know how to "quote" when replying to e-mail but when in n/g it does not quote the same way; sorry) BTW, finally, met someone else with dystonia!!! Thru my dr., I have met another patient and had dinner with him and his wife Saturday.  What a joy for both of us. He is 62 with no computer and was fascinated by my telling him all I have found. You can be sure I will print some of these posts from a.s.d. to show him what a caring group can be found online. It really has helped my depression knowing every morning I can go to a.s.d. and "be" with others who truly know and understand. Love & Hugs,  Bonnie (hey, Texas is drying out!

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Dear MB, I think you are right. I have "fear" of becoming dependent rather than being indepen- dent which implies, among other things, the freedom to drive anywhere I please. I have generalized dystonia. I have dystonia of the foot but my neuro,a movement disorder specialist, says that my right leg is rigid only when I walk. Dystonia does not manifest itself or bother me when I am sitting or lying down so it does not affect my driving. I do use two canes when walking but that is to help me maintain my balance. I also have lingual dystonia which has caused me speech, chewing and swallowing difficulties—which do not affect my driving. The request for a medical examination report came about as a result of a minor vehicular accident wherein I caused a few scratches on the right rear side of the   other   vehicle involved. This was my first accident since I started driving here in the US in 1983 and since I was diagnosed with dystonia in 1991.DMV sent me a medical examination report for me and my doctor to accomplish to determine whether I am medically and physically fit to drive a motor vehicle safely. I went to my HMO (U.S. Healthcare) primary physician and asked him to fill up the report but he declined saying that since my illness is neurological in nature, I should ask my neurologist to accomplish the report. When we left his clinic, I was very depressed and I literally cried in the car going home because I knew that I stand to lose my driver’s license if I cannot find a doctor who will vouch for me as "medically and physically able to drive a motor vehicle safely."  I don’t know what I will do without a car. I am sure my depression will become worse if I become homebound. I have been driving a lot before the accident but since that accident, I think I have used the car only twice a week. I believe I am a careful driver because I have never been involved in an accident nor received a ticket for traffic violation since 1991 and 1983.      

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(U.S. Healthcare) primary physician and asked him to fill up the report but he declined saying that since my illness is neurological in nature, I should ask my neurologist to accomplish the report. When we left his clinic, I was very depressed and I literally cried in the car going home because I knew that I stand to lose my driver’s license if I cannot find a doctor who will vouch for me as "medically and physically able to drive a motor vehicle safely."

Have you been to see your neuro yet?  Seems that since, as you said, your leg is only rigid when you’re standing, he should have no problem in filling out the form for you and getting you back behind the wheel. It’s easy to right away worry about the "worst case" scenario, and becomse quite upset and depressed, but often things turn out to be not that bad (as we hope is the case in this situation!). Do keep us posted as to your neuro’s decision. Cathy. —  (—-)                                                     (—-)   "  "         http://www.cuug.ab.ca:8001/~collisoc          "  "

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- Hide quoted text — Show quoted text – Dear MB, I think you are right. I have "fear" of becoming dependent rather than being indepen- dent which implies, among other things, the freedom to drive anywhere I please. I have generalized dystonia. I have dystonia of the foot but my neuro,a movement disorder specialist, says that my right leg is rigid only when I walk. Dystonia does not manifest itself or bother me when I am sitting or lying down so it does not affect my driving. I do use two canes when walking but that is to help me maintain my balance. I also have lingual dystonia which has caused me speech, chewing and swallowing difficulties—which do not affect my driving. The request for a medical examination report came about as a result of a minor vehicular accident wherein I caused a few scratches on the right rear side of the   other   vehicle involved. This was my first accident since I started driving here in the US in 1983 and since I was diagnosed with dystonia in 1991.DMV sent me a medical examination report for me and my doctor to accomplish to determine whether I am medically and physically fit to drive a motor vehicle safely. I went to my HMO (U.S. Healthcare) primary physician and asked him to fill up the report but he declined saying that since my illness is neurological in nature, I should ask my neurologist to accomplish the report. When we left his clinic, I was very depressed and I literally cried in the car going home because I knew that I stand to lose my driver’s license if I cannot find a doctor who will vouch for me as "medically and physically able to drive a motor vehicle safely."  I don’t know what I will do without a car. I am sure my depression will become worse if I become homebound. I have been driving a lot before the accident but since that accident, I think I have used the car only twice a week. I believe I am a careful driver because I have never been involved in an accident nor received a ticket for traffic violation since 1991 and 1983.      

Dear Ador, You have made my day by responding to all of us here on a.s.d. I want you to listen carefully!  I use a walker to get around due to generalized dystonia.  I have driven since 1962 and have been lucky to have had no accidents yet [knock on wood!].  I also am relaxed when sitting down so driving is not a problem for me.  I caught something in your other post that waved a major red flag to me…you said that you have Parkinson’s…perhaps that is part of the problem now because Parkinson’s is a progressive disease that leads to severe immobility and eventual death.  Dystonia is a damn nuisance, but does not kill us! Would Mitchel Brin be willing to fill out the form for you?  He apparently acknowledges that sitting & driving are no problem for you. Perhaps some of our NY connections on asd will have some suggestions!  It might be worth the trip to Columbia to attempt to get this resolved!  I am certain that you are a careful driver…I kinda think I am careful because I value my freedom to drive too much to risk throwing it away.   Maybe even a trip to your DMV office with info on dystonia [print out some stuff from the web pages http://www.ziplink.net/users/dystonia] and FIGHT for your license, Ador, knowing that there are a whole bunch of us here supporting you! Please keep us posted and Best Of Luck…I know you can do it, Ador!!! Much Love, MB

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Dear A.S.D. friends: I was overwhelmed by the response to my post re driver’s license for dystonia patients.. Thank you to all those who responded. I was deeply touched. But in my haste to post "Driver’s license for dystonia patients" I failed to include some valuable information which may change your opinion. Even so, I want to be honest to you. The request for Medical Examination from DMV was the result of a minor vehicu- lar accident I was involved in last December 28, 1966. I was driving south on Moonachie road at about 35 mph when a north-bound car swerved to the left into the driveway of Segovia Restaurant. I didn’t see it swerve to the left and I didn’t notice if the other car gave a warning signal. Half of the car body was inside the driveway when I noticed it. But considering the speed at which the other car entered the driveway, I thought that my speed was slow enough to pass the other car safely. But instead of moving on, the other  car suddenly stopped with its rear end protruding. When I saw the other car not moving and its rear end in my path, I hit the brake but the road was wet, my car skidded and struck the rear right side of the other car. The police report said I was trying to beat the other car in getting into the driveway but this is not true. I was going home which is one block away from the site of the accident. I think the reason the other car stopped abruptly is that the other driver realized he entered the wrong way. He entered the driveway exit instead of the entrance to the one-way driveway. The police noticed I was using two canes to walk and he asked me about my medical condition. I told him I have Parkinson’s disease. The police sent a copy of the report to DMV. The DMV sent me a medical examination report which they want me and "my doctor" to accomplish to determine whether I am medically and physically able to drive a motor vehicle safely". I went to my US Healthcare (HMO) primary physician and asked him to accomplish the report but he declined saying that since my illness is neurological in nature, he thinks a neurologist should accomplish the report. When we left his clinic, I was very depressed and I literally cried in the car going home because I knew I stand to lose my driver’s license if I cannot find a doctor who will certify that I am mentally and physically fit to drive. I strongly believe I am mentally and physically fit to drive because I did a lot of driving last year, driving as far north as Paramus which is 10 miles away from home. I can still do it in my present condition. I also believe I am a careful driver but for this accident last Dec. 28, 1996, I think the other driver is partly to blame. I never had an accident before, not even a ticket for a traffic violation. This accident was my first since I started driving in the US IN 1983. I continued to drive even after I was diagnosed with dystonia in 1991. My illness, dystonia of the foot makes walking very difficult for me but not driving. Dr. M. Brin of Mount Sinai Medical Center said my right leg is rigid only when I am walking, but not when I am at rest. My foot dystonia does not manifest itself or bother me when I am sitting or lying down. Hence, it does not affect my driving.         I use two canes when walking to help  me maintain my balance. My tongue dystonia does not interrfere with my driving although it caused me speech, chewing and swallowing difficulty. My illness has some features of Parkinson’s disease and examples of those symptoms are drooling, impaired speech and balance problem–all of which do not affect my driving. I am willing to take driving test for physically challenged people. I am not new to this kind of test. I was given a "Behind-the-wheel evaluation training program" by an Adaptive Driving Specialist from DMV after I completed my physical and speech therapy at Kessler Institute for Rehabilitation in 1993. I passed the test. The Adaptive Driving Specialist makes suggestions for changes/additions or adaptive measures for  cars of people with disabilities so they can continue to drive. My ADS said my car did not need any. Before I can take a new driving test, I need a doctor to certify that I am medically and physically able to drive a motor vehicle safely. If I can’t   get one, I will lose my license by March 18, 1997. I don’t want to be homebound by being denied the privilege to drive. If I become homebound, I am sure my depression will become worse. I just sent my request to my neuro the medical examination report but I am not sure she will agree to accomplish it. I guess doctors are afraid of legal suits if something happens to somebody they certified as medically and physically able to drive a motor vehicle safely. Thank you all for your support and prayers. Ador Peralta

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- Hide quoted text — Show quoted text – (I am on AOL and know how to "quote" when replying to e-mail but when in n/g it does not quote the same way; sorry) Hey, Bonnie. I’m on AOL too and have finally figured it out.  When in doubt, read the directions. If you want it to look like what you wrote above, click on Members, then Preferences, then Mail.  Take the ‘x’ off of "Use AOL style quotes."  Then, when you w I’m still contemplating on your idea of an AOL chat group.  There’s something that ‘doesn’t feel right’ about it but I don’t know what it is.  You, of course, Still getting over my p-neumonia but much better, Chana Mitzvah g’dolah l’hiyot b’simcha. "It is a great mitzvah to exist in a state of joy." Mass General has chat rooms open all the time for neuro patients.  There is one reserved for movement disorders.  We can set up a time and meet there if anyone is interested.  No Ports, No servers , etc.   Easy on and eas off if it doesn’t work.  I’m availabe most times.  Any suggestions on meting times.?

And yet another suggestion, check out the new IRCing program called Orbit IRC. It’s very much a WYSIWYG program, all set out for you.  You can give each person a different colour or font, all kinds of neat stuff useable with just a click. It’s shareware and you can download it from their site.  Sorry, don’t have URL handy, but just do a search on it. Mally  :)

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- Hide quoted text — Show quoted text – (I am on AOL and know how to "quote" when replying to e-mail but when in n/g it does not quote the same way; sorry) Hey, Bonnie. I’m on AOL too and have finally figured it out.  When in doubt, read the directions. If you want it to look like what you wrote above, click on Members, then Preferences, then Mail.  Take the ‘x’ off of "Use AOL style quotes."  Then, when you w I’m still contemplating on your idea of an AOL chat group.  There’s something that ‘doesn’t feel right’ about it but I don’t know what it is.  You, of course, Still getting over my p-neumonia but much better, Chana Mitzvah g’dolah l’hiyot b’simcha. "It is a great mitzvah to exist in a state of joy."

Mass General has chat rooms open all the time for neuro patients.  There is one reserved for movement disorders.  We can set up a time and meet there if anyone is interested.  No Ports, No servers , etc.   Easy on and eas off if it doesn’t work.  I’m availabe most times.  Any suggestions on meting times.? Catherine

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(I am on AOL and know how to "quote" when replying to e-mail but when in n/g it does not quote the same way; sorry)

Hey, Bonnie. I’m on AOL too and have finally figured it out.  When in doubt, read the directions. If you want it to look like what you wrote above, click on Members, then Preferences, then Mail.  Take the ‘x’ off of "Use AOL style quotes."  Then, when you want to quote … either in e-mail or n/gs … just highlight what you want and hit Reply.  BTW, this is called ‘Internet style quoting.’ I’m still contemplating on your idea of an AOL chat group.  There’s something that ‘doesn’t feel right’ about it but I don’t know what it is.  You, of course, are free to do what you want but you wouldn’t be ’sanctioned’ by DMRF or a.s.d. I don’t think.  Are  you having trouble with mIRC or, like for me, it’s almost too busy to follow and talk at the same time with all those people? Still getting over my p-neumonia but much better, Chana Mitzvah g’dolah l’hiyot b’simcha. "It is a great mitzvah to exist in a state of joy."

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- Hide quoted text — Show quoted text – Mally, bless you for the caring response to Ador about  her license and depression.  You said it all!! (I am on AOL and know how to "quote" when replying to e-mail but when in n/g it does not quote the same way; sorry) BTW, finally, met someone else with dystonia!!! Thru my dr., I have met another patient and had dinner with him and his wife Saturday.  What a joy for both of us. He is 62 with no computer and was fascinated by my telling him all I have found. You can be sure I will print some of these posts from a.s.d. to show him what a caring group can be found online. It really has helped my depression knowing every morning I can go to a.s.d. and "be" with others who truly know and understand. Love & Hugs,  Bonnie (hey, Texas is drying out!

Hi Bonnie!  I am so very glad that you have met another person with dystonia…it took me 40 years to find another!!  Just a slight correction if ya don’t mind!  Ador is a ‘he’, not a ’she’!  In fact I wonder how he is doing??  Ador, how about an update?? Later, MB

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