Question:

On 17 Jan 2004 20:01:09 -0800, goyg…@aol.com (goygirl) wrote:

Today my NP called me and told me that the CT was abnormal and that I have either nasal polyps and or cysts (3) and she is referring me to an ENT specialist. Today was the happiest and most hopeful day I have had in my life!!!! She is dubious about this being the casuse of all my suffering but I am not.  This must be the answer, please let it be. I have read alot in the last 12 hours and I believe this must be it.  I cannot go on like this much longer and I have been a terrible father and husband for a long time now, Finally, my question fot the group.  Now what???  Should I just go with whatever course of action this unknown Dr. suggests??

*If* they recommend surgery, I would not go right away with a randomly-chosen surgeon. Because surgery is a major thing, and can *occasionally* go wrong, and is a bit of an art, I would first see also other sinus surgeons, including one or two at a major University medical center, preferably including a conservative one such as Mayo.   You can easily do this under the guise of getting "second opinions." Find them yourself though, not via asking your current doctors for names. Then, *if* you still want surgery, go with the most experienced one.  They will all be glad to see you becasue sinus surgery is *big dollars*. – Hide quoted text — Show quoted text -

I am really desperate for some relief (I even posted on the net for the first time)  I dont want to be anything less than aggresive with this problem which has caused me to suffer for so long.

Response:

Have you read about the "upside down sinus flooding" with peroxide/ baking soda and kosher salt for dealing with sinus disease? If you want to follow along with other sinus sufferers who are finding some relief using it, and read the documentation check out the forum at Healthboards at: http://www.healthboards.com/boards/showthread.php?t=129210 The shortness of breath after going to bed is not normally considered a "sinus condition". I get it. I let a sinus infection go too long without treatment, and it caused me to become over sensitive to things that I was only slightly allergic to before, like cotton. When I lie in bed, my heart get irritated and starts to palpitate, and I’ll get shortness of breath. If I lie on my leather recliner without sheets or blankets, my heart remains stable. ===

Larry, you wrote: "My symptoms were as follows

 1. headache over my eyes from about 2-4 hours after awakening lasting the entire day and night  2. shortness of breath (this just started recently) only in the evening until  sleep  3.  dizziness, slight nausea  4.  facial pain (I have only recently learned to distinguish this from a headache)<===

Response:

- Hide quoted text — Show quoted text -goygirl wrote:

I need help and advice with a very serious problem.  For about 28 months now, I have had moderate to severe headaches and facial pain. I believed that this stemmed from an unsatisfactory lasik procedure and two dissapointing enhancements that followed shortly thereafter.  I encountered boursts of severe pain in the eye in question as well, so I naturally assumed that this was the cause.  I saw 3 lasik specialists and they could find nothing that would cause this pain.  I was angry and depressed.  I have been healthy my whole life and now this pain, every day, and it seemed I had chosen it.  About six to eight months ago, the eye pain stopped, but the headaches and the facial pain persisted. I found that no OTC pain med helped me but percocet taken in small doses did take away most of the pain.  OK, if noone could help me, I would address the issue with medication.  I was concerned with becoming addicted to the drug, but not concerned enough to stop, the pain was too much. I had a brain MRI and went to a couple of doctors but nothing.  

Who ordered the MRI?  What type of doctors did you see?  Did you ever see a qualified neurologist? – Hide quoted text — Show quoted text -

I was becoming more and more depressed and taking it out on my wife and kid.  I decided to rededicate myself to finding out what was wrong. Finally, a nurse practicioner at my Drs office suggested I have a CT of my sinus last week and I did.  I was  not very hopeful because I didnt seem to have any nasal congestion and almost never get a cold or the flu but what the heck. My symptoms were as follows 1. headache over my eyes from about 2-4 hours after awakening lasting the    entire day and night 2. shortness of breath (this just started recently) only in the evening  until  sleep 3.  dizziness, sligh nausea 4.  facial pain (I have only recently learned to distinguish this from a      headache) Today my NP called me and told me that the CT was abnormal and that I have either nasal polyps and or cysts (3) and she is referring me to an ENT specialist. Today was the happiest and most hopeful day I have had in my life!!!! She is dubious about this being the casuse of all my suffering but I am not.  

I don’t want to make you feel bad, but I have to say that I am not sure it’s the cause either. I don’t know anything about lasik, but I don’t understand how it could have triggered chronic sinusitis, unless you had developed some kind of post-operative eye infection and your surgeons should have been able to detect that.  The cysts and polyps could be coincidental.  Some folks have polyps for years with no symptoms. I even searched the Internet for you, to find any possible connection between sinus problems and Lasik.  I haven’t found anything.

This must be the answer, please let it be. I have read alot in the last 12 hours and I believe this must be it.  I cannot go on like this much longer and I have been a terrible father and husband for a long time now, Finally, my question fot the group.  Now what???  Should I just go with whatever course of action this unknown Dr. suggests??  

You should never do that for any course of action by any unknown doctor. Explain to this ENT all about your lasik surgery and when the problems started.  After this ENT has seen your CT scan films and told you what he thinks (is it sinusitis or a complication of lasik), start researching the ENTs in your area and find a good one, and get a second opinion from him. If you haven’t seen a neurologist yet, you should see one, and show him your MRI films. — Steven L.

Response:

On 23 Jan 2004 11:35:31 -0800, goyg…@aol.com (goygirl) wrote:

p.s.  I dont hink this is a neck problem

Why not?

Response:

I need help and advice with a very serious problem.  For about 28 months now, I have had moderate to severe headaches and facial pain. I believed that this stemmed from an unsatisfactory lasik procedure and two dissapointing enhancements that followed shortly thereafter.  I encountered boursts of severe pain in the eye in question as well, so I naturally assumed that this was the cause.  I saw 3 lasik specialists and they could find nothing that would cause this pain.  I was angry and depressed.  I have been healthy my whole life and now this pain, every day, and it seemed I had chosen it.  About six to eight months ago, the eye pain stopped, but the headaches and the facial pain persisted. I found that no OTC pain med helped me but percocet taken in small doses did take away most of the pain.  OK, if noone could help me, I would address the issue with medication.  I was concerned with becoming addicted to the drug, but not concerned enough to stop, the pain was too much. I had a brain MRI and went to a couple of doctors but nothing.  I was becoming more and more depressed and taking it out on my wife and kid.  I decided to rededicate myself to finding out what was wrong. Finally, a nurse practicioner at my Drs office suggested I have a CT of my sinus last week and I did.  I was  not very hopeful because I didnt seem to have any nasal congestion and almost never get a cold or the flu but what the heck. My symptoms were as follows 1. headache over my eyes from about 2-4 hours after awakening lasting the    entire day and night 2. shortness of breath (this just started recently) only in the evening  until  sleep 3.  dizziness, sligh nausea 4.  facial pain (I have only recently learned to distinguish this from a      headache) Today my NP called me and told me that the CT was abnormal and that I have either nasal polyps and or cysts (3) and she is referring me to an ENT specialist. Today was the happiest and most hopeful day I have had in my life!!!! She is dubious about this being the casuse of all my suffering but I am not.  This must be the answer, please let it be. I have read alot in the last 12 hours and I believe this must be it.  I cannot go on like this much longer and I have been a terrible father and husband for a long time now, Finally, my question fot the group.  Now what???  Should I just go with whatever course of action this unknown Dr. suggests??  I am really desperate for some relief (I even posted on the net for the first time)  I dont want to be anything less than aggresive with this problem which has caused me to suffer for so long. Any advice and wisdom from those with knowlede is very much appreciated Thanks, Larry

Response:

He didn’t say if he ever saw a neurologist.  I would think that’s at least as important as seeing an ENT. — Steven L. as usual Steve is right again. Steve, did you learn from me or is it vice versa? The headaches he is describing can be cervical. The first division of the trigeminal nerve is affected by cervical stimuli and is felt as a V1 pain. Murray Grossan, M.D. http://www.ent-consult.com

Response:

entcons…@aol.comnospam (ENTconsult) wrote in message <news:20040119011638.22671.00000255@mb-m18.aol.com

… The symptoms you describe are often due to neck problems. Cysts of the sinuses do  not give this type of pain. I have seen patients with this history cured by getting their auto seat adjusted, or getting rid of the glare when they type. I would recommend referral to a licensed physical therapist. Murray Grossan, M.D. http://www.ent-consult.com

just a quick follow -up for those who took the time to read my post. Went to the allergist 4 days ago, after much advice, prior to my ent. Tested for alleraies as well as a breathing test.  Not much difference before and after the med with the breathing test and was positive for many allergies.  Follow-up appt next week for results. ENT yesterday in Phoenix, finally I may get some answers on this facial pain.  Gave him my history before he read my CT, tried not to leave anything out.  Then he started reading me the results of my CT which I already knew.  I asked him if he had read the CT and he said NO, only the report from the drs at the imaging center where it was taken.  I explained that I had waited 2 weeks to see him so he could read the CT and I was dissapointed.  He said he would order it by courier and call me when he had read it in a couple of days.  Very dissapointing.  I told him I would go get it and bring it within the hour and he said fine. Anyway when he read it, he said my sinuses looked fairly healthy and he seriously doubted that my facial pain could come from the one polyp on the right side.  He gave me some Astelin and Singulair and sent me on my way.  Told me to handle it with the allergist, that was where the problem probably lies.  I was very dissapointed that there was not something he could spot on the CT.  Im back to square one with no help from the astelin in 3 doses but will continue Any suggestions?? p.s.  I dont hink this is a neck problem Larry

Response:

All your syptoms I have. I had the CT and it was sinus problems. My ENT put a tiny scope (camera) inside my nose. I have large polyps, The Ct showed a crooked septum and he said my turbinates are large. I seen another ENT for a secound opinion. He said the same thing. He used a nose spreader and a magnifier and said and showed a large polyp and bad irratation. I said I have a CT in my car and should I bring it in for him to look at. He laughed and said he never has a problem being the 2nd opinion Doctor. He looked at it and showed me each area one at a time taking plenty of time. He said it was in the severe class. Left maxillart and tube is completely blocked right side is 1/2. upper somewhat.  ect. The pain gets very bad. So now its time to have it done. Get 2 Doctors and ask other people. Ask If the Doctor has done at least 200-300 sinus operations. using FESS. Well good luck

Response:

On Sun, 18 Jan 2004 15:53:40 GMT, Steven Litvintchouk <sdlit…@earthlinkNOSPAM.net

wrote: Before he goes down this track too far: Have you ever heard of any scenario in which Lasik eye surgery could possibly cause chronic sinusitis?  The only thing I can think of would be a post-op eye infection, and his surgeons should have spotted that easily.

I could not find anything searching the Internet.

He didn’t say if he ever saw a neurologist.  I would think that’s at least as important as seeing an ENT.

I agree. Since he has a complicated problem, if he does not find a likely cause he might consider going to Mayo, which has excellent cross-disciplinary diagnostic approaches, and does not easily give up on a problem until they find the cause. Far too many other providers just rule out one cause at a time, without enough consultation across specialties.

Response:

Don and Steve Yes I did get an MRI by a qualified neurologist and he saw nothing.  I might add that I did recieve Punctal Plugs to help with the Dry Eye I experienced.  Any chance that may be the problem?  They worked wonders for my Dry Eye but I hate to think they were tthe cause of all this pain.  I aked my optomotrist friend if there is any possible connection and he said no. Larry

Response:

On 18 Jan 2004 13:13:36 -0800, goyg…@aol.com (goygirl) wrote:

Don and Steve Yes I did get an MRI by a qualified neurologist and he saw nothing.  I might add that I did recieve Punctal Plugs to help with the Dry Eye I experienced.  Any chance that may be the problem?  They worked wonders for my Dry Eye but I hate to think they were tthe cause of all this pain.  I aked my optomotrist friend if there is any possible connection and he said no.

Dry Eyes are a common complication of Lasik.  They may be asssociated with pain.    But one would expect the punctal plugs to help with that, not make it worse.  They are very commonly used. I would see what some sinus experts think of the CT scan before anything else….. Pain *above* the eyes could correspond to the ethmoid or possibly frontal sinsuses..   Is that where the polyps are or are the in the maxillary (cheek) sinuses?  Really you will know better after seeing the sinus specialist…..

Response:

The symptoms you describe are often due to neck problems. Cysts of the sinuses do  not give this type of pain. I have seen patients with this history cured by getting their auto seat adjusted, or getting rid of the glare when they type. I would recommend referral to a licensed physical therapist. Murray Grossan, M.D. http://www.ent-consult.com

Response:

- Hide quoted text — Show quoted text -Don Brady wrote:

On 17 Jan 2004 20:01:09 -0800, goyg…@aol.com (goygirl) wrote: Today my NP called me and told me that the CT was abnormal and that I have either nasal polyps and or cysts (3) and she is referring me to an ENT specialist. Today was the happiest and most hopeful day I have had in my life!!!! She is dubious about this being the casuse of all my suffering but I am not.  This must be the answer, please let it be. I have read alot in the last 12 hours and I believe this must be it.  I cannot go on like this much longer and I have been a terrible father and husband for a long time now, Finally, my question fot the group.  Now what???  Should I just go with whatever course of action this unknown Dr. suggests?? *If* they recommend surgery, I would not go right away with a randomly-chosen surgeon. Because surgery is a major thing, and can *occasionally* go wrong, and is a bit of an art, I would first see also other sinus surgeons, including one or two at a major University medical center, preferably including a conservative one such as Mayo.  

Before he goes down this track too far: Have you ever heard of any scenario in which Lasik eye surgery could possibly cause chronic sinusitis?  The only thing I can think of would be a post-op eye infection, and his surgeons should have spotted that easily. He didn’t say if he ever saw a neurologist.  I would think that’s at least as important as seeing an ENT. — Steven L.

Response:

Question:

I have found that taking chlorpheniramine (an antihistamine found in OTC medications such as Chlor-Trimeton) can stop my migraines within 15 minutes in many cases.  However, both pharmacists and doctors tell me that this isn’t supposed to happen.  But it sill works.  Can anyone tell me why?  I try aspirin, acetaminophen, codeine, and ibuprofen, but ultimately if all else fails I take chlorpheniramine, and very often that works (the reason I don’t take it to begin with is that it puts me to sleep). Any suggestions on why this particular medication works for my migraines, even though it’s "not supposed to work"?  Aren’t antihistamines usually effective treatments for migraines, or is it the other way around? — Transpose hotmail and mxsmanic in my e-mail address to reach me directly.

Response:

I’m not really sure, but many people here have taken Singulair and reported that works for them.  So many drugs, so many different people.  You know whenever doctors tell me it isn’t supposed to happen, it just means they don’t know about it Michelle

– Hide quoted text — Show quoted text – I have found that taking chlorpheniramine (an antihistamine found in OTC medications such as Chlor-Trimeton) can stop my migraines within 15 minutes in many cases.  However, both pharmacists and doctors tell me that this isn’t supposed to happen.  But it sill works.  Can anyone tell me why?  I try aspirin, acetaminophen, codeine, and ibuprofen, but ultimately if all else fails I take chlorpheniramine, and very often that works (the reason I don’t take it to begin with is that it puts me to sleep). Any suggestions on why this particular medication works for my migraines, even though it’s "not supposed to work"?  Aren’t antihistamines usually effective treatments for migraines, or is it the other way around? — Transpose hotmail and mxsmanic in my e-mail address to reach me directly.

Response:

Rick writes: The only explanation I can think of is that your headaches aren’t migraines, but are tension headaches instead.  Antihistimines are effective (especially in conjunction with analgesics) to treat this type of headache.

I thought they were tension or sinus, too, but a doctor pointed out to me that virtually all my symptoms are consistent with migraines: pain on one side of the head (usually the same side), a feeling that something is drilling or splitting into that part of the head, a change when I move around, nausea, watering eye on the headache side, sensitivity to smells, light, and some sounds, triggers that include barometric pressure changes and certain types of pollution or smells, etc. Anyway, it does seem like a migraine, but antihistamine still works. BTW, why would antihistamine be effective against tension headaches? — Transpose hotmail and mxsmanic in my e-mail address to reach me directly.

Response:

I have found that taking chlorpheniramine (an antihistamine found in OTC medications such as Chlor-Trimeton) can stop my migraines within 15 minutes in many cases.  However, both pharmacists and doctors tell me that this isn’t supposed to happen.  But it sill works.  Can anyone tell me why?  I try aspirin, acetaminophen, codeine, and ibuprofen, but ultimately if all else fails I take chlorpheniramine, and very often that works (the reason I don’t take it to begin with is that it puts me to sleep). Any suggestions on why this particular medication works for my migraines, even though it’s "not supposed to work"?  Aren’t antihistamines usually effective treatments for migraines, or is it the other way around?

The only explanation I can think of is that your headaches aren’t migraines, but are tension headaches instead.  Antihistimines are effective (especially in conjunction with analgesics) to treat this type of headache. Rick

Response:

Question:

The answer is a maybe. It depends in part on whatever other medications she is taking, such as aspirin, or anything else. Look up the Physicians Desk Reference, latest or recent editions. If your local public library doesn’t have it, visit a medical library (hospital or medical school). You can also search on the internet. If your daughter is drinking herb teas, ginseng and ginko biloba contain a blood thinner (coumodin aka warfarin).  I developed this problem a few weeks back. this was due to the heart medicines I am taking. Using a water pick twice a day cleared up the problem for me.. – Hide quoted text — Show quoted text -My daughter has exercise induced asthma (she is on her high school track team) and has started Serevent (once daily) and Flovent (110, once/day) about 4 weeks ago. Could either of these cause bleeding of the gums?  The package insert of Serevent has "dental pain" and the Flovent has "dental problem". Any information would be greatly appreciated. TIA, Pam

Response:

I had extreme reactions to serevent – like I was on super speed, even tho I can use ventolin with little effect. I almost lost my job I was so hyped up! But yes, also rinse after using any cortisone inhaler. ehansen – Hide quoted text — Show quoted text – I use Advair, the combo of Serevent & Flovent. My doctor told me to rinse with mouthwash after using or it can cause mouth sores. – Sounded fishy to me until I got one & that was with rinsing! It wasn’t on the gums, though and went away within a couple days. My doc told me to rinse longer. Now, I also brush after every dose and I haven’t a problem with that since.

Response:

I had extreme reactions to serevent – like I was on super speed, even tho I can use ventolin with little effect.

This is an interesting tidbit.  I have low blood pressure, low body temperature, and also sometimes have a problem with depression (around periods).  I noticed that I’m feeling much more alert since I’ve been on Advair — like it also changed something that was causing me to get fatigued easily (like not breathing).  Now I’m wondering if it’s just a drug effect on my nervous system rather than the breathing relief.  Anyone else with some information on this?  How can I tell, I wonder? I’ve been drinking water after using Advair, but now I’m wondering if I really should be brushing my teeth immediately after each use. –Jane

Response:

If your daughter is not using an Aerochamber, get one. Serevent caused me bad headaches. I’ve used Flovent for many years without any side effects. regards, Kurt

– Hide quoted text — Show quoted text – My daughter has exercise induced asthma (she is on her high school track team) and has started Serevent (once daily) and Flovent (110, once/day) about 4 weeks ago. Could either of these cause bleeding of the gums?  The package insert of Serevent has "dental pain" and the Flovent has "dental problem". Any information would be greatly appreciated. TIA, Pam

Response:

I use Advair, the combo of Serevent & Flovent. My doctor told me to rinse with mouthwash after using or it can cause mouth sores. – Sounded fishy to me until I got one & that was with rinsing! It wasn’t on the gums, though and went away within a couple days. My doc told me to rinse longer. Now, I also brush after every dose and I haven’t a problem with that since.

Response:

If she’s new to using an inhaler she could be getting medicine where it’s not intended to go in any significant quantity.  Getting most of the medicine into one’s lungs just takes practice.  The drill is to exhale completely, taking as long as necessary to force out all the air in the lungs.  Then start to inhaler and, just after you’ve started sucking in air, push the plunger on the inhaler while still inhaling hard. I find I often cough after I do this with no medication at all – it’s just the deep breathing that makes me cough – so I do one or two practice runs until I stop coughing before I take a "live" run with inhaler. -S- – Hide quoted text — Show quoted text – My daughter has exercise induced asthma (she is on her high school track team) and has started Serevent (once daily) and Flovent (110, once/day) about 4 weeks ago. Could either of these cause bleeding of the gums?  The package insert of Serevent has "dental pain" and the Flovent has "dental problem". Any information would be greatly appreciated. TIA, Pam

Response:

My daughter has exercise induced asthma (she is on her high school track team) and has started Serevent (once daily) and Flovent (110, once/day) about 4 weeks ago. Could either of these cause bleeding of the gums?  The package insert of Serevent has "dental pain" and the Flovent has "dental problem". Any information would be greatly appreciated. TIA, Pam

Response:

My daughter has exercise induced asthma (she is on her high school track team) and has started Serevent (once daily) and Flovent (110, once/day) about 4 weeks ago. Could either of these cause bleeding of the gums?  The package insert of Serevent has "dental pain" and the Flovent has "dental problem". Any information would be greatly appreciated. TIA, Pam

Doubtful; however side effects from MDI inhalers can be greatly reduced by using a spacer, the Aerochamber is popular; and rinsing mouth with water after inhaling. Are you sure the bleeding is from the gums, and not further down? For example, sometimes heavy coughing can irritate the throat and cause some bleeding with traces of blood in the sputum. [tell your doctor] Maybe the dentist should take a look at the gums; my dentist recommended vit C supplements along with proper brushing. Ellis

Response:

Question:

I’m having a root canal done on Friday. I’m going to a dentist that I’ve never seen before and I don’t know the name of the novacaine that doesn’t accelerate the heart. ‘Lil help? Peace, John — The charter is available at:

Question:

My left arm is really bad.  If my right arm goes, I’ll be screwed.  I think I tried Baclofen with no effect.  Good luck!!! "Tommy Hellesto" <helle…@turbonet.com

wrote in message

news:1018sd857u5ufc5@corp.supernews.com… – Hide quoted text — Show quoted text -

I live in a care center, have gone throug every treatment options–my life is writing — I learned voice and my voice changed – ugh I take 10 mg of baclofin daily — would like to hear from others with tremor problems.

Barb

— b o’hanlon-hellesto spinner of tales/weaver of verse ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ESCAPADES OF MOSTLY IRISH http://www.geocities.com/wiseheart1 POETRY http://family.palouse.net/poetry ESSAYS http://family.palouse.net/mssays/index.html ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Response:

I live in a care center, have gone throug every treatment options–my life is writing — I learned voice and my voice changed – ugh I take 10 mg of baclofin daily — would like to hear from others with tremor problems. Barb — b o’hanlon-hellesto spinner of tales/weaver of verse ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ESCAPADES OF MOSTLY IRISH http://www.geocities.com/wiseheart1 POETRY http://family.palouse.net/poetry ESSAYS http://family.palouse.net/mssays/index.html ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Response:

"Tommy Hellesto" <helle…@turbonet.com

wrote in message <news:1018sd857u5ufc5@corp.supernews.com… I live in a care center, have gone throug every treatment options–my life is writing — I learned voice and my voice changed – ugh I take 10 mg of baclofin daily — would like to hear from others with tremor problems. Barb

hi barb, i have tremor problems, especially with the hands. if you’ve gone through every treatment option, would that include the kinds of things neuros often prescribe for M.S.-related tremor — klonopin, topomax, tegretol? i take no meds specifically for tremor. my neuro said there are different kinds — intention tremor, which he says cannot be treated with meds, and other sorts, the names of which i forget. if the problem is mainly in your hands, you might try either holding the wrist of the shaky hand with the other hand, to steady it, or, i’ve heard that grabbing the shaky arm above the elbow and squeezing with your thumb and forefinger can also get them to stop. i’ve never taken klonopin, because my doc won’t prescribe two benzo’s simultaneously, and painful muscle spasms bother me more than the shakes, so i chose valium over klonopin. but my daughter took it for a while — a hack primary with a prescription pad decided she had an ‘anxiety disorder’ because she was anxious about her final exams, and prescribed it for her. she didn’t shake or tremble at all. he refused to ‘allow’ her to stp taking it, so she cold-turkeyed it without his ok. she’s fine.  :-

are there physical therapists in the care center available to you? possibly a PT would have some how-to-deal suggestions, if the meds are not working for you? i used to be a writer as well, and had to gie it up — not because of tremors, but fatigue, mobility, and cognitive reasons. it wasn’t my LIFE, though…just the way i made mylliving. best of luck — tremors can be waaaaay bothersome. rose

Response:

I find that a low dose Beta blocker works well for me. I will sometime add a half of a Xanax or Neurontin(gabapentin) if pain develops with tremors. Jack N Dalton "Essential tremor often does not require treatment. Lifestyle changes, such as reducing stress and avoiding caffeine and alcohol, may improve symptoms. Physical therapy may help reduce essential tremor of the hands, arms, legs, and trunk, and speech therapy may be beneficial for people whose voice is affected. Severe tremor that affects the patient’s ability to perform daily tasks and interferes with their quality of life can be treated with medication or surgery. Medication Severe essential tremor can be reduced using medication in most (approx. 50-75%) cases. Beta-blockers, such as propranolol (Indural

Question:

Been on 75 mgs of Effexor for two days now and am feeling just fine. No nausea this time, just a bit wired.  I was given a 7 37.5 mgs to alternate for the first two weeks, one day 75 the next day 37.5, but after day one I felt fine on the 75 mgs so I decided just to take the full dose everyday. I took a Xanax the other day, had a pap test, which causes me so much anxiety I could puke.  I felt awful, real, real tired.  I like the Klonopin better even though it takes longer to take effect.  I guess that’s the way it is, medication works differently for everyone. I am feeling better anxiety wise too, I’ve been taking Effexor ER for a month now.  Am going grocery shopping today and only feel mildy anxious about it.  Which is a big step for me because grocery shopping and the big stores are a huge cause of my anxiety. Hope to be around here more, I am off to check out the German newsreader.  Hugs,  Annette

Response:

So glad your med increase if working out well, Annette.  May your grocery shopping be uneventful. Take care, Liz – Hide quoted text — Show quoted text – Been on 75 mgs of Effexor for two days now and am feeling just fine. No nausea this time, just a bit wired.  I was given a 7 37.5 mgs to alternate for the first two weeks, one day 75 the next day 37.5, but after day one I felt fine on the 75 mgs so I decided just to take the full dose everyday. I took a Xanax the other day, had a pap test, which causes me so much anxiety I could puke.  I felt awful, real, real tired.  I like the Klonopin better even though it takes longer to take effect.  I guess that’s the way it is, medication works differently for everyone. I am feeling better anxiety wise too, I’ve been taking Effexor ER for a month now.  Am going grocery shopping today and only feel mildy anxious about it.  Which is a big step for me because grocery shopping and the big stores are a huge cause of my anxiety. Hope to be around here more, I am off to check out the German newsreader.  Hugs,  Annette

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:Been on 75 mgs of Effexor for two days now and am feeling just fine. :No nausea this time, just a bit wired.  I was given a 7 37.5 mgs to :alternate for the first two weeks, one day 75 the next day 37.5, but :after day one I felt fine on the 75 mgs so I decided just to take the :full dose everyday. Dear Annette, Glad to hear that you are doing well on your increased effexor dose Jackie ~*~I answer the heroic question "Death, where is they sting?" with "It is here in my heart and mind and memories~*~  ~Maya Angelou~

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Question:

"Twenty-two Medications Used for Bipolar Mood Stabilization in the US" By James D. Milton Last Updated: 8/22/99

Thanks James —

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Vigabatrin  – Sabrilex (severe vision problems? cocaine and nicotine addiction?)

Extreme caution should be used when taking vigabatrin! The trade name in the US is Sabril and in Europe it is Sabrilex. It is an anticonvulsant manufactured by Hoechst Marion Roussel that is unfortunately causing significant vision problems in a significant percentage of those taking it. It even appears that permanent vision damage may result. So with the next update of this article, I will omit vigabatrin. James

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did i miss any info on zoloft? i do not see it mentioned. nor is there any info listed by you on tranquilizres. i just feel very suspiciose of valproic acid and some of the other meds you mention, for my own use. anyone who is allready on the meds and is benefitting good results should continue.  but iam only on zoloft/xanax and would like to know you opinion on that. should i ask my doc. about some of the mood elevators??? would they help me more???,,,harpyrec

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<Posted and Mailed to Bruce did i miss any info on zoloft? i do not see it mentioned. nor is there any info listed by you on tranquilizers. i just feel very suspicious of valproic acid and some of the other meds you mention for my own use. anyone who is already on the meds and is benefiting good results should continue.  but i am only on zoloft/xanax and would like to know you opinion on that. should i ask my doc about some of the mood elevators??? would they help me more???,,,harpyrec

If I were to include all the antidepressants, the antianxiety meds, the antipsychotics, and all the other meds in a pdoc’s tool box, the number of meds would be several hundred long. I confined myself to those only having mood stabilizing properties. These I believe are the first line of defense for a person with BP disorder — though the others may prove to be very useful adjuncts. I personally don’t like any of the older mood stabilizers. But they work fine for some people. I am not telling you what to use. I am merely telling you what is available so you can discuss the pros and cons of each with your pdoc. My opinion is that a person with BP first needs to find a mood stabilizer (or combination of mood stabilizers) that is effective for them. Then the adjunct meds can be added later if needed. The more modern mood stabilizers (Neurontin, Lamictal, and Topamax) demonstrate strong antidepressant properties for some people. If you were taking Zoloft already and were very sensitive to these AD properties, you could wind up in a manic state if you started taking one of these mood stabilizers. I hope this answers your questions about my post. I suggest that you consult with your pdoc about your specific concerns. James D. Milton Standard Medical Disclaimer Any opinions stated should NOT be considered as medical advice! You should confirm any suggestions made with your physician who is solely responsible for prescribing ALL medications and monitoring the patient’s progress. Make NO changes in your prescribed dosages without the approval of your doctor!

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"Twenty-two Medications Used for Bipolar Mood Stabilization in the US" By James D. Milton Last Updated: 8/22/99 <For best results specify that display and printing be done 80 characters/line  with a fixed pitch font to avoid line wrapping. Please see below for various psychotropic meds that are presently being used as mood stabilizing meds in the United States. I have not attempted to list either all of the adverse side effects or all the potential benefits from these psychoaffective medications because they vary considerably from person to person. In addition an entire book could easily be written about the pros and cons of these meds. A person with a Bipolar (BP) disorder will just have to keep on experimenting until they find the meds that are effective for each individual with side effects that can be personally tolerated. In general most people usually find that the newer mood stabilizers will have a more benign adverse side effect profile than the older meds. Also these meds may well prove to be more effective — particularly when the traditional older mood stabilizers have failed for some reason or another. For additional most important information about the efficacy of the newer mood stabilizers please see the following article: Current Treatments in Bipolar Disorder: http://www.cme-reviews.com/supplements.html Since these newer meds have not been available as long, the long term benefits and disadvantages are not as well known as the mood stabilizers that preceded them. Each person should thoroughly discuss ALL the various medication options together with their associated pros and cons with their pdoc (psychiatrist or psychopharmacologist). I strongly advocate a collaborative team approach between the patient and their physician and therapist. You can find out a lot about the treatment of bipolar disorder by visiting the following most informative Web page compiled by Dr. Ivan Goldberg and then following the many valuable links to other educational sites about bipolar disorder: Bipolar (Manic-Depressive) Disorder: http://www.psycom.net/depression.central.bipolar.html Knowledge, Patience, Persistence, and Med Compliance IMO are vital keys to victory over our common illness. I wish you all the very best in your search for mental stability and well being!                   "Information Regarding BP Mood Stabilizers" Note: Only some of the potentially important effects are listed in the       following tables. Since there are NO universal responses to any       particular psychotropic medication, a person MAY or MAY NOT       experience the positive benefits or the negative adverse side       effects. YBMV (Your Brain May Vary) — and likely will!                             Older Primary Mood Stabilizers Lithium       — Lithobid, Eskalith CR (thyroid damage? tremors? weight gain?) Divalproex Na — Depakote, Epival (liver damage? nausea? hair loss? weight gain?) Valproic acid — Depakene (similar to Depakote — including platelet decrease?) Carbamazepine — Tegretol XR, Carbatrol (rare life-threatening anemia and rash?)                   Newer Primary Mood Stabilizers (Anticonvulsants) Gabapentin  – Neurontin (antidepressant? antianxiety med? IMPROVES COGNITION?) Lamotrigine — Lamictal (antidepressant? rashes? rare life-threatening rash?) Topiramate  – Topamax (antidepressant? kidney stones? heart probs? WEIGHT LOSS?) Tiagabine   — Gabatril (blocks reuptake of GABA? cognitive impairment?) Felbamate   — Felbatol (possibility of developing fatal aplastic anemia?) Pregabalin  – (Currently in Phase III; analgesic? antianxiety? social phobia?) Vigabatrin  – Sobrilex (severe vision problems? cocaine and nicotine addiction?)     Calcium Channel Blockers (to be used ONLY as Secondary Mood Stabilizers) Verapamil   — Calan SR, Isoptin SR (anti-dysrhythmic/anginal/hypertensive agent) Nimodipine  – Nimotop (improves cognition? aids multiple sclerosis depression?) Amlodipine  – Norvasc, Lotrel (anti-hypertensive agent) Diltiazem   — Cardizem CD (anti-hypertensive/anginal agent) Felodipine  – Plendil (anti-hypertensive agent) Isradipine  – DynaCirc (anti-hypertensive agent) Nicardipine — Cardene (anti-hypertensive agent) Nifedipine  – Procardia XL (anti-hypertensive/anginal/pulmonary-edema agent)             Adjunctive Medications Having Mood Stabilizing Properties Clozapine — Clozaril (older antipsychotic to be used only with anticonvulsants) Levothyroxine — Synthroid (adjust T4 level to 25% the upper limit of normal) Liothyronine sodium — Cytomel (adjust T3 level to treat refractory depression) Combining two (or more) mood stabilizers MAY be more effective than when each is taken alone. This is called "polytherapy" as opposed to the more traditional "monotherapy". One med may "potentiate" the effectiveness of another — so that the total effect becomes greater than the sum of its individual contributors. I believe that the efficacy of this approach is becoming increasingly apparent — particularly in refractory cases. It is my personal belief that polytherapy should also be utilized in nonrefractory BP cases as well. This concept is a "defense-in-depth" approach. Where one mood stabilizer is weak, hopefully another will be able to compensate for this weakness. For additional important technical information on "combination" or polytherapy please see: The Role of Complex Combination Therapy in the Treatment of Refractory Bipolar Illness: http://www.cme-reviews.com/CNS598_post.html Lithium carbonate (or another mood stabilizer) may prove helpful as a secondary adjunct to one of the newer mood stabilizers which have demonstrated powerful antidepressive properties for some people. Consequently for example I suggest that Neurontin-lithium and Lamictal-lithium combinations be considered. It is also possible that subtherapeutic dosages of lithium carbonate may be taken so as to minimize its adverse side effects. My current recommendation for optimal results is Neurontin-Lamictal. However due to the potential strong antidepressive properties of each of these meds, suggested conservative dosage titration protocols are given below. Of course only one mood stabilizer dosage should be adjusted at a time. A calcium channel blocker should at this point only be used as a secondary mood stabilizer — solely in conjunction with an effective primary mood stabilizer. There is some evidence to suggest that calcium channel blockers may be effectively used as antimanic agents — possibly as a replacement for lithium. They appear to have a much more benign side effect profile because they do not cause weight gain, do not cause tremors, and are well tolerated for gastrointestinal upsets and other adverse side effects. Of the 8 calcium channel blockers listed above, verapamil and nimodipine are the ones most commonly being used. Nimodipine is unfortunately quite expensive but shows promise under certain circumstances. Nimodipine is one of the few drugs found to increase the cerebrospinal fluid levels of somatostatin, a neuropeptide known to be permanently reduced in patients with Alzheimer’s and transiently reduced during active episodes of both depression and multiple sclerosis. Somatostatin depletion is also associated with problems of learning and memory. Subjectively, a number of patients felt more cognitively clear on nimodipine. Clozaril (clozapine) is an atypical antipsychotic medication that has some potentially rather severe adverse side effects. Nevertheless Clozaril is being successfully used in polytherapy. However the US FDA requires weekly blood tests for the first six months and biweekly thereafter. So this IMO limits the utility of Clozaril in an outpatient basis. There are many antidepressant, antianxiety, antimania, antipsychotic, and thyroid supplement (T3 and T4) meds that may prove to be very useful adjuncts to mood stabilizers in the treatment of a BP condition. My first psychiatrist, Dr. Dean Ackley, found that many of his patients needed to have their T4 levels adjusted to be in the high end of the normal T4 range. Dr. Peter Whybrow (Executive Chair of Psychiatry and Biobehavioral Sciences at UCLA) advocates raising the T4 level even further to 25% beyond the upper limit of the normal range. Combinations of synthetic T3 (triiodothyronine) and T4 (thyroxine) are being used to successfully treat refractory depression. Headaches commonly result if too much supplementary T4 and/or T3 is taken. A Neurontin-Topamax* or Lamictal-Topamax* combination may well prove effective for those wishing to lose weight. Topamax* exhibits very powerful appetite suppression effects for some people. * It has recently come to my attention that several people with BP disorder have   experienced potentially serious cognitive and physical difficulties when   taking Topamax. It is possible that these were a result of too rapid dosage   loading. The suggested bipolar protocol for Topamax given below is one half   the rate and amount used to treat seizure disorder. Consequently very careful   monitoring is advised when Topamax is prescribed. I suggest a maximum of   100 mg BID until there is more information known about adverse side effects.   One known adverse side

… read more »

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Question:

HI ITS ME AMY AGAIN, THANKS TO ALL  WHO HELPED ME BEFORE THIS CHAT LINE IS A GOD SENT, ANYWAY IM NOW ON ZOLOFT AND STILL WEENING OFF PROZAC, I FEEL SOOOO SHITTY TIRED, HEART PALPS AND DIZZY, IS THIS NORMAL AND HAS ANYONE ELSE HAD THESE   SYMTOMS  AMD WHEN DOES IT GET BETTER THANKS TO ALL

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HI ITS ME AMY AGAIN, THANKS TO ALL  WHO HELPED ME BEFORE THIS CHAT LINE IS A GOD SENT, ANYWAY IM NOW ON ZOLOFT AND STILL WEENING OFF PROZAC, I FEEL SOOOO SHITTY TIRED, HEART PALPS AND DIZZY, IS THIS NORMAL AND HAS ANYONE ELSE HAD THESE   SYMTOMS  AMD WHEN DOES IT GET BETTER THANKS TO ALL

Are you taking a benzo…I got tired from Xanax, but not Zoloft…The heart palps and dizziness are signs of anxiety…I would suspect that perhaps you have  the classic additional anxiety that you get when starting a new AD…I had tremors and other side-effects with Zoloft that increased my anxiety…This went away for the most part inside of a week, and continued to disapear in the following weeks… Best, — Charles Phipps

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Question:

Twice a day won’t work with Neurontin unless you are worried about seizures. It wears off! If you can’t do at least 3x a day I am afraid you may be wasting your money. On 4x a day maybe you could take less. I don’t think Wellbutrin is the AD for you. I suggest something in the Celexa line, or if you could use help getting to sleep, Remeron. Just have your pharmacist give me a call. Keith – Hide quoted text — Show quoted text -Do you think going higher in dosage would help?  James suggests taking it every 6 hours would help.  I have a hard enough time remembering it twice a day.  At work it is chaos at times and remembering to take the medication would be very difficult.  So far I see no adverse reactions.  I can go higher.  It is costing me 300 a month but I would pay 500 or even 1000 dollars a month if I could enjoy life on a daily basis.  It took away my high highs… now I am left with really some bad bad lows.  But I do cycle out for a few short hours… but mornings are hell.  I take the meds at noon and in the evening.  That isn’t spaced out right though.  Should take the evening dose later but the morning dose wears off.  I don’t know if raising the wellbutrin would help.  Maybe I need to ask for Lamictal.  So tired of this.  Life was so much easier years ago.

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Do you think going higher in dosage would help?  James suggests taking it every 6 hours would help.  I have a hard enough time remembering it twice a day.  At work it is chaos at times and remembering to take the medication would be very difficult.  So far I see no adverse reactions.  I can go higher.  It is costing me 300 a month but I would pay 500 or even 1000 dollars a month if I could enjoy life on a daily basis.  It took away my high highs… now I am left with really some bad bad lows.  But I do cycle out for a few short hours… but mornings are hell.  I take the meds at noon and in the evening.  That isn’t spaced out right though.  Should take the evening dose later but the morning dose wears off.  I don’t know if raising the wellbutrin would help.  Maybe I need to ask for Lamictal.  So tired of this.  Life was so much easier years ago. —   O  ooo   Cindy          O – Hide quoted text — Show quoted text – I am on 2400mg and still cycle….I just have lower lows and lower highs. I don’t feel clearer in thinking…but compared to lithium..whew!  This is MUCH better.  Just wish it would help more with the depressions. There appears to be no known therapeutic blood serum level for gabapentin used in bipolar. Each person will need a different amount. You could go as high as your doctor would allow, but money would be a limiting factor.

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I am on 2400mg and still cycle….I just have lower lows and lower highs.  I don’t feel clearer in thinking…but compared to lithium..whew!  This is MUCH better.  Just wish it would help more with the depressions.

There appears to be no known therapeutic blood serum level for gabapentin used in bipolar. Each person will need a different amount. You could go as high as your doctor would allow, but money would be a limiting factor.

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– Hide quoted text — Show quoted text – 4800mg is considered high, and the therapeutic range seems to span all dosages, at least for bipolar. Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions? Thanks in advance. Eric

Eric when I was on this drug, which was way back when it first came out on the market.  I was one of the test people for the drug.  I took 3600mgs. So higher doseages can be tolerated for this drug.  I was on it at least 3 different times for different reasons.  I was taken off 2 times and put back on it 2 other times to make it a total of 3 times.  The other mood stabilizer I was on it with I think was either Depakote or Lithium.  I am almost quite sure it was Depakote.   Betsy

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I am on 2400mg and still cycle….I just have lower lows and lower highs.  I don’t feel clearer in thinking…but compared to lithium..whew!  This is MUCH better.  Just wish it would help more with the depressions. —   O  ooo   Cindy          O – Hide quoted text — Show quoted text – Neurontin has been extremely helpful to me as an anti-depressant, mood stabilizer for me recently. I am a manic depressive. I’m nearly certain that the therapeutic range is about 400 to 2500 mgs. I am taking 2000mgs or just simply 2gs. By the way, I don’t feel "zombefied". On the contrary I feel very alert and relatively up. Good luck Ephriam Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions? Thanks in advance. Eric

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Which mood stabizer did you use along with neurontin? —   O  ooo   Cindy          O – Hide quoted text — Show quoted text – Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions? You can use more than one mood stabilizer. Neurontin should be taken every six hours.  A good therapeutic dose for me was 300 mgs 4 x per day until I added another mood stabilizer.  Once I had polytherapy I was able to lower my dose of Neurontin to 600 to 900 mgs per day. Good luck to you. Julie Thanks in advance. Eric

Response:

Do i still have to take Neurontin 4 times a day if i increase the dosage from 400 to 600 or even 800 mg? What are the side effects of Neurontin at this dosage? Thanks.

Eric: The Neurontin is excreted every six hours.  Eight if you have a slow renal excretion rate. The six hours apart is crucial if it is your only mood stabilizer.  Even if you have increased the dosage. I learned that the hard way and ended up ultra rapidly cycling till I joined the ranks of the James Milton Philosophy It had it’s drawbacks, like setting my alarm for three am just to take a pill.  I did get used to it and it was effective.  I also got tired of it and now take 2 mood stabilizers and only take Neurontin 2x per day. Good Luck! Julie – Hide quoted text — Show quoted text – Eric

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4800mg is considered high, and the therapeutic range seems to span all dosages, at least for bipolar. – Hide quoted text — Show quoted text – Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions? Thanks in advance. Eric

Response:

- Hide quoted text — Show quoted text – Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions?

You can use more than one mood stabilizer. Neurontin should be taken every six hours.  A good therapeutic dose for me was 300 mgs 4 x per day until I added another mood stabilizer.  Once I had polytherapy I was able to lower my dose of Neurontin to 600 to 900 mgs per day. Good luck to you. Julie – Hide quoted text — Show quoted text – Thanks in advance. Eric

Response:

Neurontin has been extremely helpful to me as an anti-depressant, mood stabilizer for me recently. I am a manic depressive. I’m nearly certain that the therapeutic range is about 400 to 2500 mgs. I am taking 2000mgs or just simply 2gs. By the way, I don’t feel "zombefied". On the contrary I feel very alert and relatively up. Good luck Ephriam

Do i still have to take Neurontin 4 times a day if i increase the dosage from 400 to 600 or even 800 mg? What are the side effects of Neurontin at this dosage? Thanks. Eric

Response:

Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions? Thanks in advance. Eric

Response:

Neurontin has been extremely helpful to me as an anti-depressant, mood stabilizer for me recently. I am a manic depressive. I’m nearly certain that the therapeutic range is about 400 to 2500 mgs. I am taking 2000mgs or just simply 2gs. By the way, I don’t feel "zombefied". On the contrary I feel very alert and relatively up. Good luck Ephriam – Hide quoted text — Show quoted text – Greetings everybody, I have rapid cyclings with sometimes mixed states. I never had any manic episode. I never took any mood stabilizer in my life. I’ve been taking antidepressants and anxiolytics for 10 years now with moderate results. And i lost so many jobs… So Neurontin is my first mood stabilizer. I’ve been taking Neurontin (100 mg x 4 per day) for 2 weeks now. I also take Effexor XR 150 mg per day. My mood is better. I’m not anymore angry and the anxiety is almost gone. My concentration is improved too. It’s great. I’m starting again to live after a long nightmare. However, i still have sometimes cyclings even if they are more rare and lower in intensity. What is the therapeutic range of Neurontin? I want to feel fine but to be honest i’m afraid to be *zombified* by a too much high dose of Neurontin. Suggestions? Thanks in advance. Eric

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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

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- 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.)

Response:

– 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

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 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

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, 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

Response:

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!

Response:

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.      

Response:

(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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