Question:

WHAT IS ANYONES EXPERIENCE WITH FLOVENT # OF PUFFS/# OF TIMES PER DAY? ARE YOU MILD/MODERATE ASHTMATIC?  USE OF PROVENTIL HFA AND ACCOLATE.  Have been trying to cut back on flovent 110 mg 4 puffs/2x’s per day.  Have great success with accolate but upsets stomach.  Nee Proventil for exercise and in addition to flovent on bad days/ times. Thank you

Response:

WHAT IS ANYONES EXPERIENCE WITH FLOVENT # OF PUFFS/# OF TIMES PER DAY? ARE YOU MILD/MODERATE ASHTMATIC?  USE OF PROVENTIL HFA AND ACCOLATE.  Have been trying to cut back on flovent 110 mg 4 puffs/2x’s per day.  Have great success with accolate but upsets stomach.  Nee Proventil for exercise and in addition to flovent on bad days/ times. Thank you

I checked your meds against the 1997 Asthma Guidelines/Expert Panel Report. Your dose of Flovent, 880 ug/day, puts you in the Moderate-to-High category with Moderate to Severe asthma. The Guidelines recommend you also use a long-acting bronchodilator (either Serevent, or sustained-release theophylline, or long-acting beta2-agonist tablets). Proventil as needed. I’m suprised you get an upset stomach from Accolate. The product information sheet doesn’t seem to indicate this is a significant problem. I haven’t tried Accolate yet. My steroid inhaler is Vanceril DS 84. I tried to switch to Flovent 44 but my HMO won’t pay for it. I also use Serevent & Intal inhalers; and low dose Theo-Dur, 200 mg/day. Note that Flovent is twice as strong as Vanceril per ug; 1 puff Flovent 44 = 1 puff Vanceril DS 84 or 2 puffs Vanceril 42. Ellis

Response:

I use Flovent 220 mcg, two puffs 2/day. I am doing well on this dosage. Previously I was taking 500 mcg beclomethasone 2/day. I had to buy the stronger puffer in Mexico as it was never sold here. I began that treatment in France which made a world of difference in my condition. I have been told that Flovent is stronger than what I was taking and I should only need one puff twice a day, but it doesn’t seem to work that way. I need the four puffs/day. Sue

Response:

Bill, regarding your questions on Flovent, I use a combinaaation of Flovent/Serevent.  My M.D. feels the combination is better than just Flovent on its own.  I am now trying Accolate in order to reduce inhalants.  We shall see……. at least the combination above has gotten me off of prednisone for the first time in 4 years!!!  I use 2 puffs of the long-term bronchodilator twice daily and 8 puffs of the steroid inhalant daily in the afternoon (works as well as 4 puffs twice daily). My M.D. believes that Merck will have something even better than Zyflo or Accolate available in Sept.   Keep breathing!!! Jan

Response:

Bill, regarding your questions on Flovent, I use a combinaaation of Flovent/Serevent.  My M.D. feels the combination is better than just Flovent on its own.  I am now trying Accolate in order to reduce inhalants.  We shall see……. at least the combination above has gotten me off of prednisone for the first time in 4 years!!!  I use 2 puffs of the long-term bronchodilator twice daily and 8 puffs of the steroid inhalant daily in the afternoon (works as well as 4 puffs twice daily). Jan

Regarding the 8 puffs of Flovent/day in a single dose, the manufacturer, Glaxo, recommends divided doses, twice a day. See www.industryreport.com/glaxo/glaxo.html There is evidence that this can reduce the total number of puffs/day required, since the medication is designed to work for about 12 hr. If you took the Flovent at the same time as the Serevent, you would only be using inhalers twice a day instead of 3 times/day. Also it is beneficial to use a steroid inhaler in the evening because asthma is usually worst at nite with symptoms peaking around 3 am. Perhaps you could work back to 3 puffs twice a day. Of course you would need to monitor symptoms and peak flows. Congratulations on getting off the prednisone. Just a suggestion, Ellis

Response:

Question:

As a recently diagnosed asthmatic, who is happy that the medications work for her, I am wondering about the cost of the inhalers.  I am using Proventil and Flovent.  What is the approximate cost of a canister of these medications, and is there any place that is preferable to order them from? I generally get my medications from AARP as I do a lot of traveling (no choice) and they can mail them to me where ever I am…  but the cost of these meds has me a bit frightened.  Not being able to breathe has me a bit frightened, too, at times! Mary

Response:

I don’t know the cost of Proventil as I use generic albuterol.  Flovent is about 75 USD per canister.  I use two canisters a month when I’m taking 4 puffs x2 day.  That’s a lot of money, yes, but I sorta have this thing about breathing, I like it.   I’m lucky in that I have prescription coverage that allows me to mail order my medications in 90 day supplies for only a co-pay of 20.00 for name brand drugs or 7.00 for generic.  It’s just the Walgreen’s down in Florida that they use and Walgreen’s bills my insurance company. Yeah, it can get expensive.  My doc and I sat down and figured up what it would cost me out of pocket for all the meds I take each month.  It would cover the payment on a new Porche.  <sigh Loki – who loves fast cars… – Hide quoted text — Show quoted text – As a recently diagnosed asthmatic, who is happy that the medications work for her, I am wondering about the cost of the inhalers.  I am using Proventil and Flovent.  What is the approximate cost of a canister of these medications, and is there any place that is preferable to order them from? I generally get my medications from AARP as I do a lot of traveling (no choice) and they can mail them to me where ever I am…  but the cost of these meds has me a bit frightened.  Not being able to breathe has me a bit frightened, too, at times! Mary

Response:

Mary Lu, can you use Express Scripts? They are at 1-800-696-3760.  They are another "mail" pharmacy, and I’ve found them very reasonable.  Admittedly, I am getting the prices set for my HMO, and am being sent several refills at once (only maintenance meds qualify, but your drugs WOULD be maintenance), but I only pay about $5/pop for Ventolin. Be sure to ask your doctor to specify the generic, which at least can be done for the Proventil. I’ll bet if you call them, they’ll give you a price over the phone. Kiwi Carlisle – Hide quoted text — Show quoted text – As a recently diagnosed asthmatic, who is happy that the medications work for her, I am wondering about the cost of the inhalers.  I am using Proventil and Flovent.  What is the approximate cost of a canister of these medications, and is there any place that is preferable to order them from? I generally get my medications from AARP as I do a lot of traveling (no choice) and they can mail them to me where ever I am…  but the cost of these meds has me a bit frightened.  Not being able to breathe has me a bit frightened, too, at times! Mary

Response:

My last canister of Flovent 110 retailed for $54.98.  I don’t think where you get them matters too much, unless your insurance cares.  :) janet – Hide quoted text — Show quoted text – As a recently diagnosed asthmatic, who is happy that the medications work for her, I am wondering about the cost of the inhalers.  I am using Proventil and Flovent.  What is the approximate cost of a canister of these medications, and is there any place that is preferable to order them from? I generally get my medications from AARP as I do a lot of traveling (no choice) and they can mail them to me where ever I am…  but the cost of these meds has me a bit frightened.  Not being able to breathe has me a bit frightened, too, at times! Mary

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Question:

writes: – Hide quoted text — Show quoted text -Two years ago my allergies really gave me trouble. The progression ended up with me getting pneumonia in April lasting two months until June. At the time I was 38 yrs old reasonably healthy jogging and taking karate up until I couldn’t breath after a run. I started to get sick and thought I had the Flu. But it held on and I went to the Dr.   and I was diagnosed with pneumonia. I was really sick for about 2 weeks and off work for 2 months. I was referred to a Lung Specialist in the midst of all this and had the lung function test as well as sputum tests. He told me that I had asthma as a result of the pneumonia and some scarring in my lungs. He also said that the sputum tests show that I have a fungus in my lungs called Asperligosis (I hope spelling doesn’t count here) I was put on medications Pulmicort and Ventolin. Every morning about an hour or so after I get up I get tight in my chest and hack up some interesting samples of goo. I usually get it up in an hour or so and usually don’t need a shot of my ventolin. But I find now that I don’t have the wind like I had pre-pneumonia. QUESTION— Is the Asperligosis fungi causing my asthma to be worse? Is the fungus actually causing my asthma as I never had it before? Is there any medications out that can rid me of this fungus? I would appreciate any feed back anyone can give me. Thank you.                                    Bob

Aspergillosis is a mold, causing infections in the external ear.Occasionally lesions appear in the skin,nasal sinuses,orbit,bronchi,lungs or other internal organs. Stanley Lepelstat  Phramacy Consultant Easy access to homeopathy   http://www.mja.net/accupathy Email your address for a free brochure on Homeopathy —

Question:

hey everyone… my doctor finally switched me off of effexor xr to welbrutrin sr… and now i have little bits of me that keep going numb, of i keep getting little jolts of electricity through my body. although these are not painful they are disconcerting. any suggestions? -will

the jolts of electricity sound like Effexor withdrawal. They will disappear with time. Chip

Response:

:hey everyone… :my doctor finally switched me off of effexor xr to welbrutrin sr… : :and now i have little bits of me that keep going numb, of i keep getting :little jolts of electricity through my body. although these are not painful :they are disconcerting. : :any suggestions? :-will Dear Will, Did you stop effexor cold turkey? Effexor is known for withdrawals. Electric shock type sensations can be withdrawal symptoms. There is also the possibility that this is a side-effect of wellbutrin. It can be hard to know what is causing this being you stopped taking one med and started a new med all at the same time. What dose of wellbutrin did you start at? Why are you taking the wellbutrin, anxiety and/or depression? You might want to give your doctor a call about this, maybe something can be done to alleviate this symptom. Take care! Jackie ~*~Confusion never stops, closing walls and ticking clocks Come back and take you home, I could not stop, that you now know Come out upon my seas, curse missed opportunities Am I a part of the cure, or am I part of the disease~*~      ~Coldplay~

Response:

hey everyone… my doctor finally switched me off of effexor xr to welbrutrin sr… and now i have little bits of me that keep going numb, of i keep getting little jolts of electricity through my body. although these are not painful they are disconcerting. any suggestions? -will

Hi Will –  a lot has been written about Wellbutrin (bupropion) on this newgroup over the years. In general, it’s thought that Wellbutrin is not a good med for treating anxiety disorders. One or two people here have done ok on it, but it’s a stimulating anti-depressant, and it has a lot of side-effects, which include increased anxiety – it sounds as though that might be what you’re experiencing in those symptoms. They could also possibly be related to the switch from Effexor (venlafaxine). Are you taking a benzo? That could help to alleviate the symptoms – but you need to talk to your doctor again, I think. -David-

Response:

hey everyone… my doctor finally switched me off of effexor xr to welbrutrin sr… and now i have little bits of me that keep going numb, of i keep getting little jolts of electricity through my body. although these are not painful they are disconcerting. any suggestions? -will

Response:

Question:

:My shrink has started me on 20mg though I’m having a rough time with it. I’m :trying to stay away from benzos. I got some with me but never take it due to :the addictive nature of the drug. Not to say that AD drugs aren’t addictive :unlike the shrink says. I take Cipramil at night to help with sleeping a bit :due to its sedative effect. :How r u going with your problems? Dear Wiseguy, Please call your doctor and ask about lowering your celexa dose and weaning slower, especially that you are trying to stay away from benzos. There is no reason to suffer like this. I read in your reply to Vanessa that you recently broke up with your fiancee over her inability to deal with your disorder. I`m so sorry about that. My husband isn`t very understanding about my disorder and it has caused a lot of problems too. {{{{{Wiseguy}}}}} Jackie ~*~I am of nothing special; of this I am sure.   I am a common man with common thoughts, and I’ve led a common life.  There are no monuments dedicated to me and my name will soon be forgotten, but I’ve loved another with all my heart and soul, and to me, this has always been enough~*~  ~Nicholas Sparks~

Response:

Hi Wiseguy, Sorry to hear about the break-up with your fiance. It is so hard for our partners and loved ones to understand, hey it’s hard for *us* to understand it all. I’ve been married 14 years and my condition has really tested our relationship many times. I must be one of the lucky ones as my husband comes along to therapy with me and supports me as best he can even though he doesn’t understand it. I am doing really well, thanks for asking. No panic attack for 3 months now, yipeee. Still some anxiety here and there but I can live with that. I am working 3 days per week and enjoying it, instead of dreading each day. I went to see my husband in the World Masters Games here in Melbourne last week, and I didn’t get anxious as i thought I might….sunny day….lots of people….open spaces….eeek, enough to normally keep me away or get tied up in knots. So you work at Quantas huh? Going back to work may bring some routine back to your life. It’s great that you are looking forward to it, great positive attitude, especially after all you have been through. Are you happy with you shrink? Other than prescribing meds does she give you any CBT therapy – may not be for you but it worked great for my problems. Can’t comment on your med as I have never taken ssri’s, I do take rivotril (clonazepam) which is a benzo, has helped me but you are different and you need to work out the combo and treatment that works best for you. Let us know how you are going – side effects etc. Other posters take the med you are on now (celexa) so am sure they can advise better than me. best wishes, Vanessa )

Response:

Hi Vanessa, thanks for asking. My pulpatations seemed to be in connection with the EFFEXOR XR so I’ve been told to change over. So now it’s a waiting game again. Getting off EFFEXOR XR was hell for me, I didn’t know they’re so addictive unlike what the shrink told me. Getting on Cipramil wasn’t fun either. Started off on 20mg straight out so I’m still getting used to it altough I seem to feel a bit better. As far as checking my pulse, that shoul wear off as my heart rate goes down hence reducing further anxiety. It hasn’t been the best of times for me, broke up with my fiancee of almost 5 years because she wasn’t understanding with this so she couldn’t put up with me anymore. As for now I’m a bit deppressed but trying to have a positive attitude about things though things arn’t so bright at the moment. I’m looking forward to going back to work to QANTAS next month after taking 3 months off. Hows thing with you if I may ask? Thanx

– Hide quoted text — Show quoted text – All i know is that it’s an SSRI, used mainly for anxiety, depression and OCD. Good to see you posting again wiseguy. Sorry to hear you are still suffering from anxiety/panic and have had side effects from the meds you have tried. How are your heart palpitations going? Are you still checking your heart rate as often as you used to? Vanessa ) Hi everyone. I haven’t posted for a while but I have a queation. I have just started on Cipramil for anxiety and panic disorder after having tried Aurorix and Effexor XR with no luck and a lot of side effects. Anyone have any info or experience with Cipramil? Thank You all

Response:

Hi Jackie, My shrink has started me on 20mg though I’m having a rough time with it. I’m trying to stay away from benzos. I got some with me but never take it due to the addictive nature of the drug. Not to say that AD drugs aren’t addictive unlike the shrink says. I take Cipramil at night to help with sleeping a bit due to its sedative effect. How r u going with your problems? Thanx and may God be with you all.

– Hide quoted text — Show quoted text – :Hi everyone. I haven’t posted for a while but I have a queation. I have just :started on Cipramil for anxiety and panic disorder after having tried :Aurorix and Effexor XR with no luck and a lot of side effects. : :Anyone have any info or experience with Cipramil? : :Thank You all Dear Wiseguy, I hope your doctor is starting you at a low dose and weaning you slowly onto the celexa. Usual starting dose for people with anxiety disorder is 5mgs, increasing that dose every week or so until you reach the prescribed dose. It is also a common practice to use a benzo such as xanax or klonopin while weaning on antidepressants. Give the celexa 6 to 8 weeks to kick in. Make sure to take it with food and/or water as to prevent any stomach irritation that some antidepressants can cause. You may also have to experiment with the time you take the dose to see what works best for you. I wish you much luck with your new med Jackie ~*~I am of nothing special; of this I am sure. I am a common man with common thoughts, and I’ve led a common life.  There are no monuments dedicated to me and my name will soon be forgotten, but I’ve loved another with all my heart and soul, and to me, this has always been enough~*~  ~Nicholas Sparks~

Response:

Hi everyone. I haven’t posted for a while but I have a queation. I have just started on Cipramil for anxiety and panic disorder after having tried Aurorix and Effexor XR with no luck and a lot of side effects. Anyone have any info or experience with Cipramil? Thank You all

Response:

All i know is that it’s an SSRI, used mainly for anxiety, depression and OCD. Good to see you posting again wiseguy. Sorry to hear you are still suffering from anxiety/panic and have had side effects from the meds you have tried. How are your heart palpitations going? Are you still checking your heart rate as often as you used to? Vanessa ) – Hide quoted text — Show quoted text – Hi everyone. I haven’t posted for a while but I have a queation. I have just started on Cipramil for anxiety and panic disorder after having tried Aurorix and Effexor XR with no luck and a lot of side effects. Anyone have any info or experience with Cipramil? Thank You all

Response:

:Hi everyone. I haven’t posted for a while but I have a queation. I have just :started on Cipramil for anxiety and panic disorder after having tried :Aurorix and Effexor XR with no luck and a lot of side effects. : :Anyone have any info or experience with Cipramil? : :Thank You all Dear Wiseguy, I hope your doctor is starting you at a low dose and weaning you slowly onto the celexa. Usual starting dose for people with anxiety disorder is 5mgs, increasing that dose every week or so until you reach the prescribed dose. It is also a common practice to use a benzo such as xanax or klonopin while weaning on antidepressants. Give the celexa 6 to 8 weeks to kick in. Make sure to take it with food and/or water as to prevent any stomach irritation that some antidepressants can cause. You may also have to experiment with the time you take the dose to see what works best for you. I wish you much luck with your new med Jackie ~*~I am of nothing special; of this I am sure.   I am a common man with common thoughts, and I’ve led a common life.  There are no monuments dedicated to me and my name will soon be forgotten, but I’ve loved another with all my heart and soul, and to me, this has always been enough~*~  ~Nicholas Sparks~

Response:

Question:

Is there a root cause for anxiety and panic? How and why do we *REALLY* perceive danger? A simple answer please. Thank you

Response:

:Is there a root cause for anxiety and panic? I think there are many reasons why we develop an anxiety disorder…. not just one. I don`t think we should "focus" alot of our energies on the "why" but more on the "what can I do to get better". :How and why do we *REALLY* perceive danger? For me it is what I tell myself that makes something dangerous or threatening. Jackie ~*~Be Who You Are.. And Say What You Feel.. Because Those Who Mind Don’t Matter.. And Those That Matter Don’t Mind…~*~

Response:

For me the "root cause" is genetics.  My father’s side of the family most had some form of anxiety/depression.  As a result my daughter [26] has been on Zoloft for anxiety.  My son [24] has been on and off meds.  He should continue with the Zoloft but like many others he does not like the idea of admitting something is wrong. For me the "Why" is genetics.  I got it from my kids.  :-] Like Jackie said we need to focus on "What" rather than "Why".  If you do not admit there is a problem and try to help get it "fixed" there will never be a solution for it. I quit fighting with anxiety a long time back.  I use the meds that work for me and as a result I have had a very good quality of life.  Charlie Tuna

– Hide quoted text — Show quoted text – Is there a root cause for anxiety and panic? How and why do we *REALLY* perceive danger? A simple answer please. Thank you

Response:

"sunray" wrote Is there a root cause for anxiety and panic? How and why do we *REALLY* perceive danger? A simple answer please. Thank you

Hi Sunray, there is no simple answer. Here is a link to a site I find useful. Below is an extract about the theories on what causes anxiety. http://www.panicattacks.com.au/about/anxdis/cause.html Excluding Post Traumatic Stress Disorder there are three main theories about the cause of anxiety disorders. These are 1~Biological 2~Behavioural 3~Psychodynamic 1.  The biological theory includes the genetic predisposition in panic disorder and presupposes a chemical imbalance in the brain. Biological theory: includes a genetic contribution for panic disorder 2.  The behavioural theory sees the cause as learned behaviour, including our negative thought patterns. There is no doubt we ‘learn’ to become afraid of our panic attacks…and we learn very very quickly! From this fear, the multitude of fears grow. Each feeding on each other and impacting severely on our lives 3.  The psychodynamic theory looks at childhood issues as being the cause. While not everyone with an anxiety disorder has a history of childhood abuse, many people do. And the childhood abuse issues do need to be taken into account. Childhood issues also play a role in people who don’t have a history of childhood abuse. As children we all learnt from a very early age that we needed to become, ‘a good nice person’. hope that’s simple enough Vanessa

Response:

For me the "root cause" is genetics.

I think so too. I think we have a "weak" genetic link that breaks when enough stress is applied, and will probably spend the rest of our lives learning how to cope with it. – K

Response:

That does not mean that our lives have to be ruined.  I am retired from 2 jobs [medical and governmental], my daughter is an engineer in Ft. Lauderdale, my son is a licensed electrician and doing well also.   He still has not fully come to terms with his "inherited" anxiety but he will.  Really I am surprised he has not electrocuted himself by now.  :-] I think that a lot of us are Type A  with a perfectionist/controlling personality.  In short, we are the people that contribute to progress but at a tremendous cost to ourselves.   It is learning to control the anxiety and have it work for you that is a big step forward.  Don’t fight it but use it to accomplish constuctuive things like education, excercise, outdoor activites etc. Sitting around dwelling on our anxieties just makes it worse.  I am on, Zoloft, Elavil and Xanax as needed and my life has been great.  I have "bumps" every now and then but nothing that I can not handle. As a result of my life of anxiety the best thing happened to me 9 years ago. A heart attack.  Because of that I woke up and faced the reality of what anxiety can do. Never thought too much about it before then.  I was just another hyper workaholic. Now I take one day at a time and enjoy the hell out of it.  If I have a PA I pop a Xanax and dare it to continue.  :-]  Charlie Tuna

– Hide quoted text — Show quoted text – For me the "root cause" is genetics. I think so too. I think we have a "weak" genetic link that breaks when enough stress is applied, and will probably spend the rest of our lives learning how to cope with it. – K

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Question:

- Hide quoted text — Show quoted text -salarmy4me wrote:

I am trying Serzone and Visken and am on only the second day. Visken is a beta-blocker with anti-anxiety and   anti-depressant properties. The initial testing of visken with ADs showed good results. People recovered faster than with   antidepressants alone. Visken has to be used only with certain antidepressants, though. Only Paxil, Prozac, Effexor, and   Serzone have been augmented. Of course, the combo has to be studied more, but maybe I am the guinea pig for the   combo. Dr. Bob’s discussion on this showed that 15 mg is the right dose: 5mg three times a day. The side effect profile is   benign. Interestingly, I had a burst of crying in joy today. I never had that with serzone alone, but perhaps its actually the   Serzone that has finally kicked in. If anyone is interested, I will tell you more about the augmentation strategy. * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

I’m interested…I tried Serzone but it didn’t help with my OCD. Am now on Effexor-XR. What is Visken? Thanks!

Response:

I am trying Serzone and Visken and am on only the second day. Visken is a beta-blocker with anti-anxiety and   anti-depressant properties. The initial testing of visken with ADs showed good results. People recovered faster than with   antidepressants alone. Visken has to be used only with certain antidepressants, though. Only Paxil, Prozac, Effexor, and   Serzone have been augmented. Of course, the combo has to be studied more, but maybe I am the guinea pig for the   combo. Dr. Bob’s discussion on this showed that 15 mg is the right dose: 5mg three times a day. The side effect profile is   benign. Interestingly, I had a burst of crying in joy today. I never had that with serzone alone, but perhaps its actually the   Serzone that has finally kicked in. If anyone is interested, I will tell you more about the augmentation strategy. * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

Question:

Hi Charla, Thanks for the response.  Gradual is ok with me, so just getting past some of the things that would otherwise stress me out even while on xanax is an indication the Zoloft may be doing some good? I’m glad you didn’t mind my ‘oh so detailed’ rambling.  I was a great student in creative writing in highschool. little bear–who is feeling better just from writing that post last night; theraputic, it was  to get all my ducks in a row….especially after all of the crap about Zoloft hitting this board recently. – Hide quoted text — Show quoted text – Hi Little Bear, I can not translate sorry. But I find your spirit and strength unbeatable in the face of adversary. IME with Zoloft being the first and only AD Ive taken..I could evaluate it helping me in times of trouble..because I did not react as intensly to the stressors. eg. My husband gets layed off,we were living at my moms,a five month old at the time..Snow piling up outside as high as the fence it dawns on me something is working. I was  relaxed and accepting of the circumstance.. I think when you have found the right mg range with the right AD you gradually see results. For me it did not just happen it was a gradual.I did not know when it started working..I just started feeling better. BTW I like your detailed post..:-) Hope all gets better soon Charla — Being safe is about being seen and heard and allowed to be who you are and to speak your truth.                                    —Rachel Naomi Remen,M.D. Hi Everyone! I have been ready to post this for a couple of days now but with all the b*llshit that’s been going on here (of which I admit to being a part of) along with some personal stuff, I just haven’t gotten around to it. I want to let you know how my meds are doing compared to before and just give you my updated condition, and hope to hear from many of you telling me I’m healed  LOL. No, really, just let me know how you think I’m doing as I am a first timer on the AD thing and a long time xanax friend, as well as pain meds which tend also to produce a false sense of well-being. If it were one or the other, I know it would be much simpler to evaluate my progress so please bear with me. (PUN CERTAINLY INTENDED.  ALL RIGHTY THEN, LET’S GET STARTED <g) As you may remember my problems started about 3yrs ago with horrible back pain. I was temporarily living in a town of about 10,000 after being transferred from a mega-city on the west coast.  I saw any and all available docs but I believe I was clearly out of thier league and a bit of a mystery to boot. I had two kids and was a stay at home mom for the first time in my life. (And I’m old <VBG, more than 20 but less than 42). Eventually, after MRI’s and xrays, and limited bloodwork including thyroid, I was told I had no strength in my back and was sent to PT.  This was a joke indeed.  I might as well have been in a 4th grade P.E. class–no hands on, no direction etc.I had no improvement with my back pain but within about 3mos, I had the first of three consecutive PA’s.  Of course, I had no Idea what was happening to me but the ER diagnosed them and a visit to a GP the next day confirmed it. So, that was that; I was given .25mgs xanax twice daily.  I was given very little info about benzos but I assure you, I was miserable enough with the accompaning symptoms (GAD in a nutshell )-) that I would have gladly taken them anyway.  I would have done anything to escape that awful panic/nervousness I was racked with.  And they did the trick. After a year we moved back to the big city.  I became close to a neighbor whos husband had eerily similar symptoms as mine (back and anxiety) and she recommended a doc that was supposedly the finest in his field so I called.  I was desperate by then with my back pain and the panic escalated accordingly.  I was told he was not taking new patients and I quite literally would not hang up, and I cried on the phone basically begging for an appt. until they set me up for 3mos later.  So, I had something to look forward to finally!  This was the time that I thought I could wean off of the xanax (I had learned more about the dependance issue by this time) and I weaned very slowly-or so I thought but I was hit with a series of PA’s almost exactly like the ones a year earlier. A quick call to the doc in the little town on the prairie got me scolded for going off of them with no direction or support and I was back on them but this time at .5mgs 3/day to get the GAD back under control.  I have since (stupidly) tried to stop them again, but I always had other things going on and the GAD was always present so I don’t know what I was thinking except that I wanted to know that I was in control of my own body (I don’t even want to go there). IOW, it was always a huge mistake. In the year since I started seeing this back specialist (he found 3 buldging dics in my back–two in my neck and one in my upper back. He showed me the MRI I had taken in the little town and even I could see them. So, I have endured about 10 cortisone/lidocaine injections either epidural or facet joint injections and have regained full range of motion in my neck and back but the "knife in the back" pain was still there, as painful as ever. When it was clear the injections had done all they could, I was sent on to PT. BTW, this doc is very particular and insists on specific specialists when he refers me, and I go because he obviously knows what he is doing.  I have been seeing a PT doc for about 2mos now and she is marvelous! (So was the shot guy TTTT) My back has been getting better…so much so that I no longer fear some terminal illness the way I constantly used to.  Between the three of these specialists I was finally finding answers to the pain in the back and even relief!   Now, keep in mind, and you might remember I went on Wellbutrin to quit smoking (when hubby had pneumonia in July) and though I did quit smoking (HOORAY FOR ME!!!) the Wellbutrin just about did me in. I was a screaming, sweaty, panicky mess–24hrs a day for about 9wks I think. To be fair, for those of you who are new to this group, I was warned by some of our veterans about Wellbutrin and that it would not be a good choice for someone already suffering anxiety. But for a few reasons, I took it anyway, quit smoking and proved our experts to be experts.  I reacted word for word the way I was warned I would. It was awful but YMMV when it comes to meds. It just wasn’t right for me.  I was then put on Zoloft 50mgs daily and was still getting better in the back pain department.  I had no bad side effects from the Zoloft (some sweating and a little irritablity at first but was immediately better when I put down the Wellbutrin so it’s difficult to say whether it was getting off the W and on the Z or both.  Anyway, out of the blue during PT, it was discovered I have an internal impingement on my right shoulder.  Off to another specialist who says no more PT until he fixes my shoulder either with cortisone injections or simple surgery. H gave me a shot in the bursa? and my elbow was stuck to my waistline for a week. Right arm too….bummer.  The problem is that while I am away from ‘hands on’ PT, my back muscles go back into spasms and my neck tightens up and all of the progress I’ve made is fading quickly.  I am having a bit more difficulty getting in touch with the shoulder doc so no MRI has been scheduled yet and I’m hanging in limbo.  My PT is frustrated for obvious reasons–things were going so well. Let me be clear on something here: when I say my back got so much better, it is to say that the pain went from unbearable to bearable and I was able to move again and because of that progress, I was mentally more at ease (and I always believed the pain caused the anxiety since I could think of nothing else).  Anyway, during the Wellbutrin phase, I was up to the max xanax dose for me 2.5-3mgs daily. It was awful. With the Zoloft, so far 5-6wks? I am down to .25mgs 3/day. But I can feel the urge to take more while I go through the return of the back pain and watching all that progress go down the drain. I may need to go up another .25 each day–either that or chew my lips off, grit my teeth (Oh yeah, I had 3 crowns done last month-I consider dental work a setback just for existing!) or get angry all the time, etc.  See, I was so looking forward to the AD taking over for the xanax–I just knew that Zoloft was the answer.  I feel sorta good on it; I am cautiously optimistic. Now I don’t know what to expect or how I should proceed. I know I have bored you silly—-I don’t know why my posts are always so long.  I guess I don’t want to miss anything and then I read your posts that are so clear and concise and to the point……But I had so many points <BG I look forward to your observations regarding the Zoloft, how much better do you think I should expect to get. How do I know if it’s the right one for me, and isn’t it a bitch that just when I might be able to pull everything together, half of it falls apart. I’m not going to know if the Zoloft helps my anxiety until I have a normal, calm, regular period of time in my life to evaluate it. What I mean is, the thought of the back pain returning in it’s original form is enough to scare the crap out of me. And then there’s the holidays….OMG, don’t know if I am going to make it. Thanks everyone who took the time to read this in it’s entirety.  I look forward to any responses at all. little bear–who

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Response:

Hi Cheryl, I  have responded in length to other’s posts to this thread and I guess I’ve said all that can be said (hopefully, ASAP is secretely thinking). But thanks for sharing your coffee with me this morning and for your kind words. The "Jim Carrey on Acid:" cracked me up.  See, I can be cracked up. That hasn’t been true for months and months.  Thank you for your prayers, I believe they help–I really do. little bear-who needs a nap now (see you in 6mo) NOT :0} – Hide quoted text — Show quoted text – Little Bear,   I wish I could help you with the Zoloft issue…but I am on Remeron and I have been on Wellbutrin and it made me nuts!  Jim Carrey on Acid so to speak!  Anyway, your story brought tears to my eyes.  I can identify, being chronically ill myself.  I know the vicious vicious cycles it produces, the one illness festering into another into another.  I am on pain meds myself and the "false sense of well being" really hit me.  When I take them it’s the ONLY time I feel "normal."  Little Bear, you have been through so much and I think you have maintained your sense of self, humor and faith. Just know you are not alone…and I am here and we are all here for you. And I love long posts, I kick back with the old cup of coffee and feel like you are right in my living room.  God bless you, friend.  I will keep you in my prayers and mostly in my thoughts. Hi Everyone! I have been ready to post this for a couple of days now but with all the b*llshit that’s been going on here (of which I admit to being a part of) along with some personal stuff, I just haven’t gotten around to it. I want to let you know how my meds are doing compared to before and just give you my updated condition, and hope to hear from many of you telling me I’m healed  LOL. No, really, just let me know how you think I’m doing as I am a first timer on the AD thing and a long time xanax friend, as well as pain meds which tend also to produce a false sense of well-being. If it were one or the other, I know it would be much simpler to evaluate my progress so please bear with me. (PUN CERTAINLY INTENDED.  ALL RIGHTY THEN, LET’S GET STARTED <g) As you may remember my problems started about 3yrs ago with horrible back pain. I was temporarily living in a town of about 10,000 after being transferred from a mega-city on the west coast.  I saw any and all available docs but I believe I was clearly out of thier league and a bit of a mystery to boot. I had two kids and was a stay at home mom for the first time in my life. (And I’m old <VBG, more than 20 but less than 42). Eventually, after MRI’s and xrays, and limited bloodwork including thyroid, I was told I had no strength in my back and was sent to PT.  This was a joke indeed.  I might as well have been in a 4th grade P.E. class–no hands on, no direction etc.I had no improvement with my back pain but within about 3mos, I had the first of three consecutive PA’s.  Of course, I had no Idea what was happening to me but the ER diagnosed them and a visit to a GP the next day confirmed it. So, that was that; I was given .25mgs xanax twice daily.  I was given very little info about benzos but I assure you, I was miserable enough with the accompaning symptoms (GAD in a nutshell )-) that I would have gladly taken them anyway.  I would have done anything to escape that awful panic/nervousness I was racked with.  And they did the trick. After a year we moved back to the big city.  I became close to a neighbor whos husband had eerily similar symptoms as mine (back and anxiety) and she recommended a doc that was supposedly the finest in his field so I called.  I was desperate by then with my back pain and the panic escalated accordingly.  I was told he was not taking new patients and I quite literally would not hang up, and I cried on the phone basically begging for an appt. until they set me up for 3mos later.  So, I had something to look forward to finally!  This was the time that I thought I could wean off of the xanax (I had learned more about the dependance issue by this time) and I weaned very slowly-or so I thought but I was hit with a series of PA’s almost exactly like the ones a year earlier. A quick call to the doc in the little town on the prairie got me scolded for going off of them with no direction or support and I was back on them but this time at .5mgs 3/day to get the GAD back under control.  I have since (stupidly) tried to stop them again, but I always had other things going on and the GAD was always present so I don’t know what I was thinking except that I wanted to know that I was in control of my own body (I don’t even want to go there). IOW, it was always a huge mistake. In the year since I started seeing this back specialist (he found 3 buldging dics in my back–two in my neck and one in my upper back. He showed me the MRI I had taken in the little town and even I could see them. So, I have endured about 10 cortisone/lidocaine injections either epidural or facet joint injections and have regained full range of motion in my neck and back but the "knife in the back" pain was still there, as painful as ever. When it was clear the injections had done all they could, I was sent on to PT. BTW, this doc is very particular and insists on specific specialists when he refers me, and I go because he obviously knows what he is doing.  I have been seeing a PT doc for about 2mos now and she is marvelous! (So was the shot guy TTTT) My back has been getting better…so much so that I no longer fear some terminal illness the way I constantly used to.  Between the three of these specialists I was finally finding answers to the pain in the back and even relief!   Now, keep in mind, and you might remember I went on Wellbutrin to quit smoking (when hubby had pneumonia in July) and though I did quit smoking (HOORAY FOR ME!!!) the Wellbutrin just about did me in. I was a screaming, sweaty, panicky mess–24hrs a day for about 9wks I think. To be fair, for those of you who are new to this group, I was warned by some of our veterans about Wellbutrin and that it would not be a good choice for someone already suffering anxiety. But for a few reasons, I took it anyway, quit smoking and proved our experts to be experts.  I reacted word for word the way I was warned I would. It was awful but YMMV when it comes to meds. It just wasn’t right for me.  I was then put on Zoloft 50mgs daily and was still getting better in the back pain department.  I had no bad side effects from the Zoloft (some sweating and a little irritablity at first but was immediately better when I put down the Wellbutrin so it’s difficult to say whether it was getting off the W and on the Z or both.  Anyway, out of the blue during PT, it was discovered I have an internal impingement on my right shoulder.  Off to another specialist who says no more PT until he fixes my shoulder either with cortisone injections or simple surgery. H gave me a shot in the bursa? and my elbow was stuck to my waistline for a week. Right arm too….bummer.  The problem is that while I am away from ‘hands on’ PT, my back muscles go back into spasms and my neck tightens up and all of the progress I’ve made is fading quickly.  I am having a bit more difficulty getting in touch with the shoulder doc so no MRI has been scheduled yet and I’m hanging in limbo.  My PT is frustrated for obvious reasons–things were going so well. Let me be clear on something here: when I say my back got so much better, it is to say that the pain went from unbearable to bearable and I was able to move again and because of that progress, I was mentally more at ease (and I always believed the pain caused the anxiety since I could think of nothing else).  Anyway, during the Wellbutrin phase, I was up to the max xanax dose for me 2.5-3mgs daily.  It was awful. With the Zoloft, so far 5-6wks? I am down to .25mgs 3/day. But I can feel the urge to take more while I go through the return of the back pain and watching all that progress go down the drain. I may need to go up another .25 each day–either that or chew my lips off, grit my teeth (Oh yeah, I had 3 crowns done last month-I consider dental work a setback just for existing!) or get angry all the time, etc.  See, I was so looking forward to the AD taking over for the xanax–I just knew that Zoloft was the answer.  I feel sorta good on it; I am cautiously optimistic. Now I don’t know what to expect or how I should proceed. I know I have bored you silly—-I don’t know why my posts are always so long.  I guess I don’t want to miss anything and then I read your posts that are so clear and concise and to the point……But I had so many points <BG I look forward to your observations regarding the Zoloft, how much better do you think I should expect to get. How do I know if it’s the right one for me, and isn’t it a bitch that just when I might be able to pull everything together, half of it falls apart. I’m not going to know if the Zoloft helps my anxiety until I have a normal, calm, regular period of time in my life to evaluate it. What I mean is, the thought of the back pain returning in it’s original form is enough to scare the crap out of me. And then there’s the holidays….OMG, don’t know if I am going to make it. Thanks everyone who took the time to read this in it’s entirety.  I look forward to any

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Response:

Hi Chip, Good to hear from you!  First of all, don’t I know how complicated my situation is.  That is why it is so difficult to get a handle on any progress made and being terrified to let any of it go (the back thing). Let me itemize a bit. Smoking-easy as could be to stop, never had an urge since. Can take it or leave it for friends and family–would never preach. I always take my meds as prescribed. Never one for the other or vice versa. I do not drink alcohol at all anymore. I used to love it. Problem is, I take pain meds and xanax from the time I get up in the AM every four hours. I am on a pain mgt program so I don’t wait for the pain.  And I just happen to take the xanax at the same time. So if I were to lack one or the other, it would feel the same I’ve been living with the back and shoulder thing for 3yrs, it is better than it has ever been–and I’m mentally better for it, but I also fear a huge setback if this shoulder thing isn’t taken care of soon. I’m comfortable with all of my docs–no added anxiety there, though the shoulder guy could use a better bedside manner and might have warned me about the shoulder pain that resulted from the injection. Also, I would be less stressed if he would call back so we can get going on this. Ironically, my old insurance runs out end of Nov. and is currently paying 100% due I have met max out of pocket for year (boy, that says something doesn’t it?) Holiday season? Can’t avoid it, can I.  So I’ll just blow them away with gourmet stuffings and mouth watering desserts.  Nothing traditional–I need to occupy my mind and feed my ego <VBG.  I got through my husbands near fatal illness this summer without a scratch. You were all a tremendous help (for the 40th time). My husband is the kind of man who takes me as I am. The other morning (the shoulder morning) I walked into the bathroom when he was showering and said, "you know, I think you may want to trade me in on a newer model with a good warranty program, as it seems I’m falling apart a little more each day".  He said, "yeah, but if I recall, I got a lifetime guarantee when I married you". I bitch about him sometimes but he is head and shoulders above any other man I (personally know). And I love him dearly with never a doubt he feels the same way.  How do I rate my recovery?  Well, I feel real happiness for the first time in a long time. I get through situations normally considered difficult, with much more ease. I can go a bit longer between xanax doses. Yesterday I went 7 1/2 hrs (and though you may think they would, pain meds do not control anxiety at all!) And I no longer feel euphoria when taking my pain meds–that pleasant effect lasted a very short time……so I take them on the theory that if I don’t and my back flares up, we can undo much of what we have accomplished.  Much like the situation I face with the shoulder.  My PT is so upset–she could probably use about .25mgs Well Chip, you said all comments were welcome and I handed you a few to get started with but if I had to grade myself it would probably look something like this:  1996-F   1997-F  1998-F 1999 C+ / B- depending on the day–now that is just for my mental state and anxiety. Unfortunately, since my mental outlook depends so much on my physical health, it’s like a yo-yo.  Oh, yeah, nearly forgot–before the Zoloft, I had constant fears of having cancer or any one of 20 different horrible diseases. I tortured myself with thoughts of ‘who will take care of my family when I go’. That seems silly to me now, but it was very real believe me.  I also think the Zoloft has given me the gift of GAB as it works to control the gift of GAD. little bear Little Bear, I know for my recurrant depression and panic anxiety (with agoraphobia) I need a "cocktail" of meds including Klonopin 2 mg/day, Zoloft 150 mg/day, desipramine 50 mg/day, and p.r.n.  Xanax ranging from 0.5 to 1.5 mg/day. It can take time to find the right mixture of meds to make you feel better. And that mixture can change from time to time as your body adjusts to the chronic administration of your meds. You have the additional problems of back and shoulder pain which makes your situation even more complex than mine. I would advise taking pain meds for pain, and anti-anxiety meds for anxiety. I.E. don’t take more Xanax because you have increased back or shoulder pain! (take pain meds) It’s difficult for me to judge how you are doing because you have introduded so many variables into your equation (panic anxiety, cig smoking, back and shoulder pain, fear of "terminal" illness, stress over husband’s illness this past summer,  multiple care providers, upcoming holiday season, etc). Plus, you are married to a man and I know how difficult we can be to live with sometimes! How would you translate your progress? How are you feeling these days? How do you think you are doing? All comments and observations are welcome!! You seem to be in good spirits. Chip my progress? Hi Everyone! I have been ready to post this for a couple of days now but with all the b*llshit that’s been going on here (of which I admit to being a part of) along with some personal stuff, I just haven’t gotten around to it. I want to let you know how my meds are doing compared to before and just give you my updated condition, and hope to hear from many of you telling me I’m healed LOL. No, really, just let me know how you think I’m doing as I am a first timer on the AD thing and a long time xanax friend, as well as pain meds which tend also to produce a false sense of well-being. If it were one or the other, I know it would be much simpler to evaluate my progress so please bear with me. (PUN CERTAINLY INTENDED. ALL RIGHTY THEN, LET’S GET STARTED <g) As you may remember my problems started about 3yrs ago with horrible back pain. I was temporarily living in a town of about 10,000 after being transferred from a mega-city on the west coast. I saw any and all available docs but I believe I was clearly out of thier league and a bit of a mystery to boot. I had two kids and was a stay at home mom for the first time in my life. (And I’m old <VBG, more than 20 but less than 42). Eventually, after MRI’s and xrays, and limited bloodwork including thyroid, I was told I had no strength in my back and was sent to PT. This was a joke indeed. I might as well have been in a 4th grade P.E. class–no hands on, no direction etc.I had no improvement with my back pain but within about 3mos, I had the first of three consecutive PA’s. Of course, I had no Idea what was happening to me but the ER diagnosed them and a visit to a GP the next day confirmed it. So, that was that; I was given .25mgs xanax twice daily. I was given very little info about benzos but I assure you, I was miserable enough with the accompaning symptoms (GAD in a nutshell )-) that I would have gladly taken them anyway. I would have done anything to escape that awful panic/nervousness I was racked with. And they did the trick. After a year we moved back to the big city. I became close to a neighbor whos husband had eerily similar symptoms as mine (back and anxiety) and she recommended a doc that was supposedly the finest in his field so I called. I was desperate by then with my back pain and the panic escalated accordingly. I was told he was not taking new patients and I quite literally would not hang up, and I cried on the phone basically begging for an appt. until they set me up for 3mos later. So, I had something to look forward to finally! This was the time that I thought I could wean off of the xanax (I had learned more about the dependance issue by this time) and I weaned very slowly-or so I thought but I was hit with a series of PA’s almost exactly like the ones a year earlier. A quick call to the doc in the little town on the prairie got me scolded for going off of them with no direction or support and I was back on them but this time at .5mgs 3/day to get the GAD back under control. I have since (stupidly) tried to stop them again, but I always had other things going on and the GAD was always present so I don’t know what I was thinking except that I wanted to know that I was in control of my own body (I don’t even want to go there). IOW, it was always a huge mistake. In the year since I started seeing this back specialist (he found 3 buldging dics in my back–two in my neck and one in my upper back. He showed me the MRI I had taken in the little town and even I could see them. So, I have endured about 10 cortisone/lidocaine injections either epidural or facet joint injections and have regained full range of motion in my neck and back but the "knife in the back" pain was still there, as painful as ever. When it was clear the injections had done all they could, I was sent on to PT. BTW, this doc is very particular and insists on specific specialists when he refers me, and I go because he obviously knows what he is doing. I have been seeing a PT doc for about 2mos now and she is marvelous! (So was the shot guy TTTT) My back has been getting better…so much so that I no longer fear some terminal illness the way I constantly used to. Between the three of these specialists I was finally finding answers to the pain in the back and even relief!

Question:

The antidepressant venlafaxine (Effexor) is similar in its pharmacology to Meridia, yet it isn’t scheduled.  The antidepressant bupropion Wellbutrin) is arguably more of a "stimulant" than sibutramine, yet isn’t scheduled.  (I’m not arguing that either *should* be, of course.) Both butorphanol (Stadol) and tramadol (Ultram) are so-called "non-narcotic" analgesics which can cause dependence and abuse, yet they aren’t scheduled.  It’s clear that an indication of obesity is enough of a bogeyman to the DEA that they’ll schedule first and worry about it later.

It was clear to Knoll that obesity was enough of a bogeyman. I spoke to some of their folks just before the press conference announcing the market date. They knew they couldn’t fight the Schedule 4 classification. If they could have, it would have been much easier to market. For one thing, they could have given physicians samples. This is a no-no in scheduled drugs. Barbara Barbara Hirsch, Publisher Obesity Meds and Research News OMR Web Site: http://www.obesity-news.com

Response:

Perhaps once enough experience is gained with it, it will be removed from the DEA Schedules.

Has anything ever been unscheduled?  I recall a bunch of unscheduled going scheduled (clonipin, soma, etc), but none going the other way. — dc potts biologist at large (pull the nospam out of my email address to respond)

Response:

Do you have any idea why Meridia is scheduled?  It isn’t addictive, is it?

There’s no evidence that sibutramine has any abuse potential, but the fact that it is psychoactive and that it has (in some individuals) somewhat of a stimulating action AND that it is prescribed for obesity, was enough for the DEA to classify it as C-IV.  Their thinking is obviously to be as careful and restrictive as possible at the drug’s introduction, rather than risk the possibility of releasing a drug unscheduled, only to find that it has a degree of abuse potential. Perhaps once enough experience is gained with it, it will be removed from the DEA Schedules. The antidepressant venlafaxine (Effexor) is similar in its pharmacology to Meridia, yet it isn’t scheduled.  The antidepressant bupropion Wellbutrin) is arguably more of a "stimulant" than sibutramine, yet isn’t scheduled.  (I’m not arguing that either *should* be, of course.) Both butorphanol (Stadol) and tramadol (Ultram) are so-called "non-narcotic" analgesics which can cause dependence and abuse, yet they aren’t scheduled.  It’s clear that an indication of obesity is enough of a bogeyman to the DEA that they’ll schedule first and worry about it later. — Steve Dyer

Response:

Now the DEA isn’t going to know whether a doctor sees the patient or not by the prescription, but if a doctor is prescribing huge amounts of a drug, that could trigger an investigation. Then if the DEA investigates and finds irregularities in records, the doctor has a problem.

Wow. I wish we could get rid of this whole stupid prescription system. Vigara is not scheduled, but Meridia is (not that it should be, but that’s another post).

Stupid inconsistencies like this are one reason. What’s the big deal about going to a doctor a couple of times a year and getting a prescription? That’s what I do.

Why should we have to? Why should I have to ask someone else, and pay them, for permission to put something into my own body? And the people who make the laws that dictate what I can and cannot take often have no more medical knowledge than what I scoop out of the cat box. J — Tonight we’re going to party like it’s 1899. Remove the X to email me.

Response:

Vigara is not scheduled, but Meridia is (not that it should be, but that’s another post). I wondered why I see Viagra offered everywhere, and not Meridia.  That explains it. Do you have any idea why Meridia is scheduled?  It isn’t addictive, is it?

Another reason you don’t see Meridia everywhere is that it’s expensive, and not a very effective drug. It’s scheduled, because there is no anorectic drug with any CNS stimulating qualities at all which the FDA will approve without scheduling it. Meridia isn’t that different than Effexor and Wellbutrin which aren’t scheduled. Per Glen Rickards’ post, Meridia isn’t all that similar to fenflruamine. Fen both releases and inhibits the reuptake of serotonin, Meridia is just a serotonin uptake inhibitor. It also works on norepinephrine. Barbara Barbara Hirsch, Publisher Obesity Meds and Research News OMR Web Site: http://www.obesity-news.com

Response:

I have heard, but have not independently verified, that Meridia is chemically similar to fenfluramine. – Hide quoted text — Show quoted text – Vigara is not scheduled, but Meridia is (not that it should be, but that’s another post). I wondered why I see Viagra offered everywhere, and not Meridia.  That explains it. Do you have any idea why Meridia is scheduled?  It isn’t addictive, is it? AB

Response:

Vigara is not scheduled, but Meridia is (not that it should be, but that’s another post).

I wondered why I see Viagra offered everywhere, and not Meridia.  That explains it. Do you have any idea why Meridia is scheduled?  It isn’t addictive, is it? AB

Response:

Yes, that is exactly what I am looking for. Meridia totally online. Viagra is available through www.Focus-Medical.com

It is not wise to get medications without an exam (especially the first time), and it is questionable whether it is legal. Very few doctors would be willing to prescribe schedule 4 drugs without seeing patients first, since the physician must submit his DEA identification number with each prescription. If the DEA sees irregularities it can rip the license. Now the DEA isn’t going to know whether a doctor sees the patient or not by the prescription, but if a doctor is prescribing huge amounts of a drug, that could trigger an investigation. Then if the DEA investigates and finds irregularities in records, the doctor has a problem. Vigara is not scheduled, but Meridia is (not that it should be, but that’s another post). The only doctor I’m aware of who ever prescribed drugs on-line is now undergoing a DEA investigation after a raid on his office last year. And he doesn’t prescribe Meridia anyway. Most states have regulations allowing doctors to prescribe without seeing a patient, but the intent of the law is so that a physician can prescribe something to an existing patient who for one reason or another cannot come into the office. The intent of the law is not for doctors to become "drug stores", for writing a prescription for a fee. My guess is that states will begin clarifying their laws, and the DEA case mentioned above will probably bring some direction as well. What’s the big deal about going to a doctor a couple of times a year and getting a prescription? That’s what I do. I’ve been taking phentermine for over two years, so there probably wouldn’t be any danger if my doctor didn’t see me. But I still think it’s worth it to get checked out once in a while. Barbara Barbara Hirsch, Publisher Obesity Meds and Research News OMR Web Site: http://www.obesity-news.com

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Yes, that is exactly what I am looking for. Meridia totally online. Viagra is available through www.Focus-Medical.com – Hide quoted text — Show quoted text – I think what they are looking for is a doctor that will give them a script after a phone consulation. I saw a news story on people getting viagra this way, they find these places on the net, they call and talk to a doc, or maybe they call you, ask you a few questions and then give you a ’script. without ever seeing a doc in person. and it’s all perfectly legal. Tricia C. 322/276/159   (new scale –adjusted numbers) 46 lbs lost on Atkins since May 26, 1998 <<I am looking for an online source for a prescription and fill for Meridia. I have been told that Viagra is available online with a Doctors consultation and a prescription. I am looking for the same service for Meridia. Thanks **Well..if you had a doctors consultation..wouldnt you have a doctors perscription..??** Just Me,  Lisa. "I’m not fat..I’m big boned!" -Eric Cartman- *SouthPark* PCOS the silent Disease << http://www.pcosupport.org

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I think what they are looking for is a doctor that will give them a script after a phone consulation. I saw a news story on people getting viagra this way, they find these places on the net, they call and talk to a doc, or maybe they call you, ask you a few questions and then give you a ’script. without ever seeing a doc in person. and it’s all perfectly legal. Tricia C. 322/276/159   (new scale –adjusted numbers) 46 lbs lost on Atkins since May 26, 1998 – Hide quoted text — Show quoted text – <<I am looking for an online source for a prescription and fill for Meridia. I have been told that Viagra is available online with a Doctors consultation and a prescription. I am looking for the same service for Meridia. Thanks **Well..if you had a doctors consultation..wouldnt you have a doctors perscription..??** Just Me,  Lisa. "I’m not fat..I’m big boned!" -Eric Cartman- *SouthPark* PCOS the silent Disease << http://www.pcosupport.org

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<<I am looking for an online source for a prescription and fill for Meridia. I have been told that Viagra is available online with a Doctors consultation and a prescription. I am looking for the same service for Meridia. Thanks **Well..if you had a doctors consultation..wouldnt you have a doctors perscription..??** Just Me,  Lisa. "I’m not fat..I’m big boned!" -Eric Cartman- *SouthPark* PCOS the silent Disease << http://www.pcosupport.org

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I am looking for an online source for a prescription and fill for Meridia. I have been told that Viagra is available online with a Doctors consultation and a prescription. I am looking for the same service for Meridia. Thanks

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The antidepressant venlafaxine (Effexor) is similar in its pharmacology to Meridia, yet it isn’t scheduled.  The antidepressant bupropion Wellbutrin) is arguably more of a "stimulant" than sibutramine, yet isn’t scheduled.  (I’m not arguing that either *should* be, of course.) Both butorphanol (Stadol) and tramadol (Ultram) are so-called "non-narcotic" analgesics which can cause dependence and abuse, yet they aren’t scheduled.  It’s clear that an indication of obesity is enough of a bogeyman to the DEA that they’ll schedule first and worry about it later.

A couple of corrections, here.  In two states, Wellbutrin (bupropion), in its regular release form (not SR or the Zyban formulation), IS scheduled, the equiavlent of Schedule IV (Utah & Washington states).  The reason Ultram & Stadol aren’t scheduled because the formulations have such strong narcotic antagonist properties (give either to an opiate/opioid addict and watch them go into withdrawal). Basically, Meridia is schedule IV for the same reason Redux was — because somewhere someone mentioned that these drugs are essentially amphetamine deriviatives, and the FDA/DEA has it’s standard reaction – over-regulation. Of course, if you look at the federal schedules, you’ll see a much stronger trend toward controlling stimulants that depressants (Morphine notwithstanding).  I mean we’ve got drugs like Valium at Schedule IV, but a useful stimulant like phentermine at schedule III.  Typical. I think most of this will become academic in the next five years as the newer anti-obsesity drugs come out that have absolutely no relationship to stimulants or any stimulant activity.  Zenical, and it’s close relatives merely change the way fat is processed in the body, so hopefully access to these drugs won’t be limited by unnecessary regulation. — Rob Bowling, PharmD      (and Meridia patient)

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I had written that I had seen a report indicating CHEMICAL similarity between fen and Meridia.  You appear to be talking about differences in the pharmacological effect.  Chemical similarity doesn’t always imply identical pharmacology, but rather, relates to the structure and composition of the molecule.

Well, sibutramine is not particularly chemically similar to fenfluramine. — Steve Dyer

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I had written that I had seen a report indicating CHEMICAL similarity between fen and Meridia.  You appear to be talking about differences in the pharmacological effect.  Chemical similarity doesn’t always imply identical pharmacology, but rather, relates to the structure and composition of the molecule. – Hide quoted text — Show quoted text -Per Glen Rickards’ post, Meridia isn’t all that similar to fenflruamine. Fen both releases and inhibits the reuptake of serotonin, Meridia is just a serotonin uptake inhibitor. It also works on norepinephrine. Barbara Barbara Hirsch, Publisher Obesity Meds and Research News OMR Web Site: http://www.obesity-news.com

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There’s no evidence that sibutramine has any abuse potential, but the fact that it is psychoactive and that it has (in some individuals) somewhat of a stimulating action AND that it is prescribed for obesity, was enough for the DEA to classify it as C-IV.

What does psychoactive mean, exactly?  When I hear the word I think of LSD, or similar drugs, but it must have a broader definition. AB

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        Just a couple of corrections to your corrections                 Stadol IS scheduled (C-IV). That’s correct.  But this is relatively recent, so I can be excused for having old information. In fact, my original comments which this guy tried to correct were made a while ago; I didn’t see his article in the newsgroup.     Speaking of Stadol, the mixed agonist/antagonist dezocine (Dalgan) is not     scheduled at all, and it is the most morphine-like (highest mu-opioid     activity) of any of the mixed agonist-antagonists.  Dezocine makes Stadol     look like Tylenol. Stadol would never have been scheduled if it hadn’t been made available in a non-injected dosage form (nasal spray) which caused it to be prescribed more widely than it had been been in the previous 15 years.  Mixed agonist/antagonists which must be injected are almost by definition rarely misused, because they’re infrequently found outside hospitals, and the population of outpatients prescribed them is very small. There’s nothing like lack of use to promote lack of abuse.  I’m sure that dezocine follows this same pattern. In fact, the whole idea of a mixed agonist/antagonist being less abusable than, say, codeine, a C-II drug, is a thoroughly discredited 1960’s-era notion.  But it lives on in the current DEA schedules (only recently has this caught up to Stadol, but only after hoardes of formerly respectable people prescribed the drug started to like it a bit too much.)     The scheduling of Meridia, which has absolutely no abuse potential (or IMO     any effect at all, for that matter) is really hysterical, especially in     light of the fact that it’s pharmacodynamically identical to venlafaxine. Which shows you just how much the DEA cares about pharmacology.     What amazes me is how little is understood about     bupropion’s mechanism even after years of research. Yup.  And I’m astonished that any state would think of placing it under any controls at all.  It really doesn’t have any abuse potential.   Since this is a weight loss med newsgroup, it’s probably worth pointing out   that bupropion causes anorexia and weight loss in a pretty high percentage   of subjects.  It’s actually vastly superior to sibutramine or venlafaxine in   this regard. I’ve tried it, and really didn’t notice any anorectic effect worth getting excited over.  The ones who lose their appetite on bupropion are usually 95 lb. grandmothers, not those of us who would benefit from such an effect!    BTW, Ultram is not an antagonist.  Both tramadol and its primary metabolite    are pure, albeit weak, agonists. Correct.  This guy is a Pharm. D.? — Steve Dyer

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Since this is a weight loss med newsgroup, it’s probably worth pointing out that bupropion causes anorexia and weight loss in a pretty high percentage of subjects.  It’s actually vastly superior to sibutramine or venlafaxine in this regard.

Hmmm, that would explain why I didn’t have the urge to stuff my face when I was using Zyban to quit smoking.  In fact, some folks I know even lost weight while quitting smoking on Zyban. Of course, once I went off of it, my weight started going up rapidly … — KC 196/189 (again)/135 Eating smarter since 8/8/98 — exercising since 9/15/98 (reduced calorie/reduced fat/increased protein/low-glycemic/high-fiber/vegetarian WOE)

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The scheduling of Meridia, which has absolutely no abuse potential (or IMO any effect at all, for that matter) is really hysterical, especially in light of the fact that it’s pharmacodynamically identical to venlafaxine.

A few people have commented on their weight loss success using Effexor. Does the above statement indicate that someone who’s tried Meridia and not seen any effect would not benefit from Effexor either?

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Just a couple of corrections to your corrections Stadol IS scheduled (C-IV).  Phentermine is C-IV, not C-III.  C-III anorexiants include phendimetrazine and benzphetamine, which are rarely prescribed.  Both are more effective than phentermine. Speaking of Stadol, the mixed agonist/antagonist dezocine (Dalgan) is not scheduled at all, and it is the most morphine-like (highest mu-opioid activity) of any of the mixed agonist-antagonists.  Dezocine makes Stadol look like Tylenol. The scheduling of Meridia, which has absolutely no abuse potential (or IMO any effect at all, for that matter) is really hysterical, especially in light of the fact that it’s pharmacodynamically identical to venlafaxine. With respect to bupropion (Wellbutrin), even though animal models intended to screen for "abusability" (self-administration, drug discrimination, etc.) show that it has this property, in humans, it doesn’t seem to have that effect.  In blind studies comparing 30 mg d-amphetamine, 200 mg bupropion (immediate release), and placebo, experienced stimulant abusers could not distinguish bupropion from placebo, while they reliably picked d-amphetamine every time.  The structural similarity to diethylpropion is well known, but bupropion apparently does not provoke transmitter release as amphetamine analogs generally do.  What amazes me is how little is understood about bupropion’s mechanism even after years of research. Since this is a weight loss med newsgroup, it’s probably worth pointing out that bupropion causes anorexia and weight loss in a pretty high percentage of subjects.  It’s actually vastly superior to sibutramine or venlafaxine in this regard. BTW, Ultram is not an antagonist.  Both tramadol and its primary metabolite are pure, albeit weak, agonists.

– Hide quoted text — Show quoted text – The antidepressant venlafaxine (Effexor) is similar in its pharmacology to Meridia, yet it isn’t scheduled.  The antidepressant bupropion Wellbutrin) is arguably more of a "stimulant" than sibutramine, yet isn’t scheduled.  (I’m not arguing that either *should* be, of course.) Both butorphanol (Stadol) and tramadol (Ultram) are so-called "non-narcotic" analgesics which can cause dependence and abuse, yet they aren’t scheduled.  It’s clear that an indication of obesity is enough of a bogeyman to the DEA that they’ll schedule first and worry about it later. A couple of corrections, here. In two states, Wellbutrin (bupropion), in its regular release form (not SR or the Zyban formulation), IS scheduled, the equiavlent of Schedule IV (Utah & Washington states).  The reason Ultram & Stadol aren’t scheduled because the formulations have such strong narcotic antagonist properties (give either to an opiate/opioid addict and watch them go into withdrawal). Basically, Meridia is schedule IV for the same reason Redux was — because somewhere someone mentioned that these drugs are essentially amphetamine deriviatives, and the FDA/DEA has it’s standard reaction – over-regulation. Of course, if you look at the federal schedules, you’ll see a much stronger trend toward controlling stimulants that depressants (Morphine notwithstanding).  I mean we’ve got drugs like Valium at Schedule IV, but a useful stimulant like phentermine at schedule III.  Typical. I think most of this will become academic in the next five years as the newer anti-obsesity drugs come out that have absolutely no relationship to stimulants or any stimulant activity.  Zenical, and it’s close relatives merely change the way fat is processed in the body, so hopefully access to these drugs won’t be limited by unnecessary regulation. — Rob Bowling, PharmD     (and Meridia patient)

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Question:

Hi Andy: It’s been a while.  I am in the Bot B study too and recieved 10,000 U the 1st  time and had maybe 10 days that seemed to be some improvement, but only with  the tremor not the spasms.  11 weeks later, now 2 weeks ago, I recieved 12,500  U and once again, it was only a small improvement.  It is kinda dissapointing!   Like you, I have antibodies to A.  I will be in Nashville this weekend and am  looking forward to hearing some other ideas.  Although, my MDS at Emory here  in Atlanta, really keeps up and in discouraging the Selective Deneration  procedure.  One of the surgeons here is doing the Deep Brain Stimulation on  Parkinson’s and essential tremor with wonderful results.  I guess that is my  hope!  My MDS tried to find him(Dr, Jerry Vitek) today so I could talk to him  about when he was going to start this procedure on Dystonia patients and we  couldn’t hook up with him, so my doc is suppose to talk to him about it.    Did you have any symptoms of dry mouth or difficulty swallowing after the Bot  B?   I did, and became very excited believing it was going to help and it did  some but only a short period of time (2 weeks). Just thought I would share that with you! Take care, Kathie Nsta of GA

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Dear Andy, I’m so sorry about the Botox B not working for you.   As Elf already asked, I too thought that the B was made specifically for those  who had antibodies for the A. I can’t know for sure how you feel, but can imagine that your hopes were very  high.  Again, I’m so sorry and sad that it didn’t work for you. Take Care, Gina

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BOTULINUM TOXIN TYPE A    Botulinum toxin type A (BOT-yoo-lye-num) is used to treat    certain eye conditions, such as:        Blepharospasm — A condition in which the eyelid will not         stay open, because of a spasm of a muscle of the eye.        Strabismus — A condition in which the eyes do not line up         properly.    Botulinum toxin type A is injected into the surrounding    muscle or tissue of the eye, but not into the eye itself.    Depending on your condition, more than one treatment may be    required.    This medicine is to be administered only by, or under the    immediate supervision of, your doctor. It is available in the    following dosage form:   Parenteral-Local  Injection (U.S. and Canada) Before Receiving This Medicine    In deciding to receive a medicine, the risks of receiving the    medicine must be weighed against the good it will do. This is a    decision you and your doctor will make. For botulinum toxin type    A, the following should be considered:  Allergies  – Tell your doctor if you have ever had any unusual or allergic reaction to botulinum toxin type A. Also tell your health care professional if you are allergic to any other substances. Pregnancy — Studies on effects in pregnancy have not been done in either humans or animals. Breast-feeding — It is not known whether botulinum toxin type A passes into the breast milk. However, this medicine has not been reported to cause problems in nursing babies. Children  – Studies on this medicine have been done only in adult patients, and there is no specific information comparing use of botulinum toxin type A in children up to 12 years of age with use in other age groups. Older adults   — Many medicines have not been studied specifically in older people. Therefore, it may not be known whether they work exactly the same way they do in younger adults. Although there is no specific information comparing use of botulinum toxin type A in the elderly with use in other age groups, this medicine is not expected to cause different side effects or problems in older people than it does in younger adults. Other medicines  – Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary. Tell your health care professional if you are using any other ophthalmic prescription or nonprescription (over-the-counter [OTC]) medicine. Other medical problems  – The presence of other medical problems  may affect the use of botulinum toxin type A. Make sure you tell your doctor if you have any other medical problems, especially: Heart problems or other medical conditions that may worsen with rapidly increasing activity — Treatment with botulinum toxin type A may give you better vision and the desire to become more active in your daily life; this may put a strain on your heart and body. Infection with  Clostridium botulinum   toxin (botulism poisoning), history of — Persons with a history of infection with  Clostridium botulinum   toxin (botulism poisoning) may have produced antibodies that may interfere with botulinum toxin type A therapy and make it less effective. Proper Use of This Medicine Dosing   — The dose of botulinum toxin type A will be different for different patients. The following information includes only the average doses of botulinum toxin type A. For  injection   dosage form:  – For certain eye conditions: Adults and children 12 years of age and older — One or more injections into the muscles around the eyes one or more times, depending on the condition being treated. Children up to 12 years of age — Use and dose must be determined by your doctor. Precautions After Receiving This Medicine. After you have received this medicine and your vision is better, you may find that you are a lot more active than you were before. You should increase your activities slowly and carefully to allow your heart and body time to get stronger. Also, before  you start any exercise program, check with your doctor. Side Effects of This Medicine. Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. Check with your doctor as soon as possible if any of the following side effects occur: More common Dryness of the eye; inability to close the eyelid completely. Less common or rare. Decreased blinking; irritation of the cornea (colored portion) of the eye; turning outward or inward of the edge of the eyelid. Other side effects may occur that usually do not need medical attention. These side effects may go away as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome: More common Blue or purplish bruise on eyelid; drooping of the upper eyelid; eye pointing upward or downward instead of straight ahead; irritation or watering of the eye; sensitivity of the eye to light. Less common or rare. Difficulty finding the location of objects; double vision; skin rash; swelling of the eyelid skin. Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.

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I heard the final phase for Botox B will be in March or April and then probably a year later for FDA approval.  FYI Andy

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Hi Kathie, Thanks for all the info. on Botox B.  I’m really interested in this, as Botox A has never really worked for me and I feel it’s even made my dystonia worse. Do you know if ‘they’ are checking out the possibility of symtems getting worse like with the ‘A’ ? Keep us posted !! Gina

Response:

Hi Everyone: Just wanted to let you know that I am in the Bot B (NeuroBloc) study here in Atlanta at Emory.  I am in the dose escalation study. 1st time, I recieved 10,000units (equal to about 200units of A), for me I developed hoarseness the next day, some difficulty swallowing for about 2 weeks, and a very dry mouth-like you get with the anti-cholinergics(Artane)), I have a very active dystonic tremor more than a pulling and it helped with the tremor for about 2-3 weeks the 1st time.  I didn’t recieve that much effect with the pain level though.  2nd series (12,500 unitsgiven=250 of A) was 4 weeks ago,that was 11 weeks after the 1st.  I had a more positive effect this time- the tremor is more diminished, the pain is decreased and so far at 4 weeks, it is still effective.  I had developed antibodies to A after 3 years, and that was in 1994 so this has been a tremendous relief to me.  It seems that the dose range with the B is what they are trying to determine, also the safety factor.  For me, it does not seem to help quite as much as A did for me but my dstonia has progressed in the last 3 years.  It is hard to pull out of my MDS much info about other patients he is treating with the B.  I have the info from the first double blind trials with B, and they were not using a large enough dose to see a lot of improvement,but there was more when they used the 10,000u (that was the highest dose they gave at Emory) so there is hope.  I will keep you all updated on my progress. By the way, you can e-mail Aethna Neurosciences and they will send you info on the 1st study. You all are a great bunch of people at a.s.d., I don’t get to check the posts often but when I do I can feel the love and support through my p.c.  I was in Nashville for the Symposium.  It was great!  By the way, everyone at the sym. was given a copy of the PSA that was done about dystonia by LA Lakers Jerry West, has anyone heard if that is being run anywhere?  Much thanks to David Stein(who does the 1-800-HURTFUL calls for NSTA) he was the one who arranged the PSA. Also, thanks to Deb who posted the highlights from Nashville here-I wasn’t attentive enough to catch all of that!!! Best wishes to everyone, Kathie

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Oxford (UK) is just about to start trials for Botox B. What have the results been like in USA/Canada? is it something to get excited about? Any different side effects? Thanks – Chris Usenet

If I remember right, Botox B is not quite as good as the original, but if you develop anti-bodies to the original, it is a very good option. Ray T.

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Chris,  I just got back from the NSTA supposium  (well the 1st day that is:) and they  did address Botox B (which will be marketed as "NeuroBloc") …. Some of their  patients are seeing results …. ?? I don’t know personally though… Andy  might be able to "share" some information with you <G I’ll let him "tell ya". Elf in Tn…Romona – Hide quoted text — Show quoted text – Oxford (UK) is just about to start trials for Botox B. What have the results been like in USA/Canada? is it something to get excited about? Any different side effects? Thanks – Chris

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Oxford (UK) is just about to start trials for Botox B. What have the results been like in USA/Canada? is it something to get excited about? Any different side effects? Thanks – Chris

Response:

Hi gang, It has been awhile since I posted.  No luck with Botox B for me.  

Sorry to read  this, Andy.  I hadn’t heard from you  for a while and figured everything was okay.   You mentioned stress.  I  found stress  was "the great exacerbater" of muscle spasms, so much so, that I had to  stop working.   I am an accountant by profession. On a few occasions, I thought of returning back to work and,  every time, memories of what it was like at the office made me turn into a cold sweat. Dystonia  made my life  miserable, I think that at one point, at least this is what a psychologist mentioned, there was a danger of suicide.  Living this way,  in constant pain, and the pressures  at work,  was   too  much. Sorry for bringing this up, but if there are any out there who feel this way, and feel guilty about  having second thoughts regarding  their careers,  my advice to you is don’t feel this way.   Dystonia is a serious syndrome, don’t let anyone tell you differently. Regarding Phenol, I think you may find what you are looking for at: http://www.rehabnet.com/monographs/nblock.htm Regards, Gene http://personal.nbnet.nb.ca/ev or http://personal.nbnet.nb.ca/ev/index.html

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I am going to try to beat Tommye to this one, Teresa!  What are facets? Do they fasten your ribs to the rest of you?  Do they hook your knees to your legs? I do not think I have any facets, could be my problem–LOL–Sue

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Hi gang, It has been awhile since I posted.  No luck with Botox B for me.  I tried it twice and the second time getting the maxium allowed under the study.  I have heard that it has helped other ST’ers.  So, that is good!  I am trying Mexiletane now to see if this helps.  I don’t know if Botox B is not  working becuase of the stress I am under (work, personnal) or that I have antibodies to Botox A and still have them for Botox B.  Stress is killing me.  I hope I can relax a little in 98.  Will see.  Doctor thinks antibodies…  Lucky me.  Just thought I would keep you posted.   New:  Well my doctor is going to start his own study with Phenol (don’t know about this just like ITX which no one is trying yet) because it destorys the nerves to the muscles (they way I understand it).  It may be good for some people but me I don’t want to destory nothing at this time.  Also, he wants to try some of the new Parkinsons medication approved by FDA as well.  Will keep you posted. Andy

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(APENFAN) writes: It has been awhile since I posted.  No luck with Botox B for me.  I tried it

twice and the second time getting the maxium allowed under the study. Andy!  We have missed you!  So glad you are back with us, although the botox debacle is a bummer!  Post again, okay? Love, Mary Beth

Response:

Stress and dystonia is wierd for me.  There are times when, under great stress, that my spasms are not any worse at all; then at other times, with the same level of stress, by spasms go bozonkers! Take care- Gina

Odd, isn’t it?   What works for one, won’t for another. Stress, as you say, exacerbates "at times". It’s as  if dystonia is responding to exterior forces, and what it is I haven’t got a clue.   Dr. Joseph Tsui, in conversation with Professor Eugene Smith, discussed this delema.  Here is how it went: If dystonia symptoms originate because of a problem in the brain, have you neurologists studied the brain enough to know what’s really going on there? Attempts have been done.  This is a conditiontion of motor control and therefore lots of programs in motor control are involved with that.  There have been recent publications on the use of PET scans–PET meaning positro emission tomography –in writer’s cramp, for example.  When you activate certain movements, the certain areas of the brain can light up.  They pick up some very subtle abnormalities–that is, a little deviating compared with the normal.  But all these are so embryonic in  their development that they are so difficult to interprets. We don’t even have a good pattern for normal. What we understand currently I can only put into a very simple example.  The basal ganglia is likened to something like a computer–a computer chip.  To simplify it, it seems to contain all the complex movement patterns of the body and store them in terms of programs.  These programs are stored there when we’re young.  You learn certain complex movements.  You learn to play a piano and  when you’re young the basal ganglia is a very plastic structure.  It accepts all sorts of programming, but once the programs are there, and as one grows older, this plasticity is lost.  That is, you learn things with much more difficulty when you are getting older. These programs are interconnected with each other, executing through the cortex so we can do several things at the same time.  I can talk to you, but I can also get my hand and play around with it without even thinking about it.  Then I am just pulling on a few switches.  These are all activated like  computer switches.  But in dystonia some of these programs go wrong, particularly in focal dystonia. In writer’s cramp, for example, the writing program goes wrong, but the hand is completely normal  doing any other things.  When you want to flip on  the switch of writing, it starts going crazy.  The interesting issue is that there are at least two writing programs–one using the wrist and fingers, the  other by using more proximal shoulder movements.  Now most patients with writer’s cramp when they write have problems, but when they use chalk to  write on a blackboard, they all right.  They can write perfectly well. So all this helps us to understand that it is actually much more complex than a computer–that there are motor-programming problems within the basal ganglia, and, if something goes wrong there, the action will be abnormal. That area also governs the normal posture of different parts of the body, so if that program goes wrong and it decides that the neck should be twisted, then unfortunately the brain would have to listen to this program. So we believe that it is probably a biochemical abnormality, but even that conclusion is  standing on shaky grounds. Because right now if you believe in the connections, maybe the  biochemical substance there is correct but the connections are wrong.  but the theory about this biochemical imbalance is that, in some  patients with dystonia, you can improve the  dystonia by giving them therapeutic agents  like anti-cholinergic drugs, and therefore we think that it may be a biochemical imbalance. But unfortunately not all patients respond to the same drugs.  A well-known example is that –if you know the transmitter called dopamine for Parkinson’s disease–some patients respond very  well to dopamine, that is, a drug that enhances dopamine.  But some other patients respond to drugs that oppose dopamine, and so we are completely at a loss.  We are confused.  Drugs that work in totally different directions can be beneficial in one patient and vice versa in another patient, and it is only dopamine. The we come to talk about cholinergic substances.  People have been using anti-cholinergic drugs, and there has been a report on cholinergic substances–that is again a different direction–that work well in the same kind of illness.  The more convincing issue  is that some patients with neck dystonia can come with a history that initially the head turns to the left and after a while turns to the right.  So we don’t really know what everything means.  In writer’s cramp, for example, some patients will start off having problems  with the right hand, then shift to the use of the left hand to write.  A small proportion of these patients actually after years develop the same problem in the other hand.  This also helps to support the fact that it may be a central problem rather than a more peripheral problem.  the theories are not very well founded.  It could be a biochemical imbalance, but I suspect that in some patients, particularly in specific problems, it may be something more subtle than a biochemical imbalance. Well, if you don’t know what causes dystonia, or if it has more than one possible cause, how can you treat it?   Or do you sometimes have to say, "You will just have to live with it"? Anything short of knowledge of the underlying cause we really cannot provide a cure for the condition.   Symptomatic treatments for the condition with all the medications have been very unsatisfactory.  Most patients get temporary relief but the side-effects are so bad that most of them would finally give up the medications, and therefore  it is not good at all. Although it is not a cure, botulinum toxin provides a very good symptomatic relief for many patients.  It has provided at least  some hope and also given the doctors something to do to help  the patient.  And that actually significantly improved the awareness of the condition.  Lots of research has been done, and the funding agencies have paid more attention to funding research in dystonia.  Botulism: the first reported case was in 1897.  The word comes from the Latin word for sausages-food poisoning from sausages,  bad sausage. Two types of neurotoxins have been identified initially-type A and type B neurotoxin.  More and more protein types of the toxin have  been found-to 1970 up to 7 types described: A, B, C, D, E, F, G (C further subdivided into I and 2).  In 1924 the bacterium was finally given a name, clostridium botulinum.  All neurotoxins are inactivated by boiling, and only A, B, E, F have been shown to give rise to human clinical botulism.  Only type A has been a marketed drug, though type F was recently investigated and shown to be effective in patients who have grown resistant to type A; the duration of effectiveness was much shorter weeks rather than months.  Type B toxin  is currently being investigated in a multi-center study. What the toxin does in the body is to go to a junction between  nerves and muscles, and it blocks the impulses between nerves and muscles.  Normally what happens is that, when you want the arm to move or want to contract a certain muscle of the arm,  your brain sets off an electrical impulse that is conducted by a  nerve like a piece of wire right down to the junction between the nerve and the muscle. But it is not electricity that goes through  to the muscle. At the end of the nerve it releases a chemical, and that chemical goes on to tell the muscle to contract.   Botulinum toxin actually stops this process.  It prevents the  release of this chemical from the nerve endings and as a result  it gives rise to paralysis or weakness of the muscle, depending  on the dose.  The toxin attaches itself to the nerve terminals; it is something like ingested by the nerve terminal and then within the nerve cell it exerts its action to prevent the release of the substance called acetylcholine. About the history of the toxin I think full credit has to be given  to Alan Scott, who collaborated with the bacteriologist Edward  Shantz.  They worked together in the development of the toxin.   Alan Scott is an ophthalmologist in San Francisco.  He had been  always longing to develop a method to replace surgery to treat a condition called strabismus, which is a condition of crossed eyes in children.  In these children the eyes actually look in different directions, and the way to help them is to cut away one muscle  that pulls the eye to one side and therefore the eyes can be restored to look straight ahead. This procedure, he thought, might be replaced by an injection of a substance which could temporarily weaken the muscle.  As the child growsup, the condition may be self-correcting, so if they are left with a normal muscle they probably will end up better.  He had been working on that, and in 1973 in a publication we found out that this botullnum toxin A had been able to do that.  That is, the substance is quite safe.  It does not produce any generalized bad reactions.  It does not produce any local reactions, and it can also give rise to a rather predictable weakness for a period of time, ranging from several months up to eight months in the monkey.  With that he worked on to actually apply it in the human, and in 1980 he made the first publication of its use as an alternative to surgery in children, and he was quite successful with that. The story would have just ended there, but there’s another condition called blepharospasm.  This condition, now classified as a neurological condition, is a focal dystonia. But because  the symptoms occur in the eyelids, most patients go to see eye  doctors because the eyes are

… read more »

Response:

Andy, I’m so sorry that Botox just doesn’t work for you!!!  I’d really do some major research before I go the "phenol route"–but if you pain is bad enough, you will get to the point you will try anything, but Let’s just hope and pray that it doesn’t get that bad!!  I’m here if you need a shoulder…you know, sometimes we all do.  Keep us informed on yourself, please. Love Ya, Tommye – Hide quoted text — Show quoted text – Andy,  Long time no hear from kiddo …. I’m so sorry to hear about the second round of Botox B (max dose) not working….:::major sad face::: Phenol … I’ve read about that … Gene sent a post with url(s) a few months ago …. hum ..guess I need to go back and re-read it. I knew that it could cause "damage" … but a niggling of memory is there …isn’t he phenol a effective treatment in managing some of the symptoms … ????? Good luck at the next dr.s appt … keep us updated on how everything is going …the good, bad and duckly(opps that wouldn’t apply since your with Dr.B:) …many hugs and lots of love from all the "elves" here in TN…Romona

Response:

Andy,  Long time no hear from kiddo …. I’m so sorry to hear about the second round of Botox B (max dose) not working….:::major sad face::: Phenol … I’ve read about that … Gene sent a post with url(s) a few months ago …. hum ..guess I need to go back and re-read it. I knew that it could cause "damage" … but a niggling of memory is there …isn’t he phenol a effective treatment in managing some of the symptoms … ????? Good luck at the next dr.s appt … keep us updated on how everything is going …the good, bad and duckly(opps that wouldn’t apply since your with Dr.B:) …many hugs and lots of love from all the "elves" here in TN…Romona

Response:

Gang, I had to add my 2 cents worth on this one-lol.   I, as everyone else have tried conventional and other medicine.  I had the facets in my upper lumbar spine fractured (I believe by chiropractor) years ago.  I worked for and was also treated by a Pain Specialist last year.  He used Phenol on the nerves going to the facets.  I STILL HAVE NO PAIN THERE!!!!!!!  I had some weird reaction in my knee and leg muscles on that side for a day or two – did not last long – no other problems.  You might want to consider giving it a try.  If I had that choice, with my limited experience and success – I would try it.     Teresa

Response:

Wow Gene!!  What an excellent response – Thank You!! Gina – Hide quoted text — Show quoted text – Stress and dystonia is wierd for me.  There are times when, under great stress, that my spasms are not any worse at all; then at other times, with the same level of stress, by spasms go bozonkers! Take care- Gina Odd, isn’t it?   What works for one, won’t for another. Stress, as you say, exacerbates "at times". It’s as  if dystonia is responding to exterior forces, and what it is I haven’t got a clue.   Dr. Joseph Tsui, in conversation with Professor Eugene Smith, discussed this delema.  Here is how it went: If dystonia symptoms originate because of a problem in the brain, have you neurologists studied the brain enough to know what’s really going on there? Attempts have been done.  This is a conditiontion of motor control and therefore lots of programs in motor control are involved with that.  There have been recent publications on the use of PET scans–PET meaning positro emission tomography –in writer’s cramp, for example.  When you activate certain movements, the certain areas of the brain can light up.  They pick up some very subtle abnormalities–that is, a little deviating compared with the normal.  But all these are so embryonic in  their development that they are so difficult to interprets. We don’t even have a good pattern for normal. What we understand currently I can only put into a very simple example.  The basal ganglia is likened to something like a computer–a computer chip.  To simplify it, it seems to contain all the complex movement patterns of the body and store them in terms of programs.  These programs are stored there when we’re young.  You learn certain complex movements.  You learn to play a piano and  when you’re young the basal ganglia is a very plastic structure.  It accepts all sorts of programming, but once the programs are there, and as one grows older, this plasticity is lost.  That is, you learn things with much more difficulty when you are getting older. These programs are interconnected with each other, executing through the cortex so we can do several things at the same time.  I can talk to you, but I can also get my hand and play around with it without even thinking about it.  Then I am just pulling on a few switches.  These are all activated like  computer switches.  But in dystonia some of these programs go wrong, particularly in focal dystonia. In writer’s cramp, for example, the writing program goes wrong, but the hand is completely normal  doing any other things.  When you want to flip on  the switch of writing, it starts going crazy.  The interesting issue is that there are at least two writing programs–one using the wrist and fingers, the  other by using more proximal shoulder movements.  Now most patients with writer’s cramp when they write have problems, but when they use chalk to  write on a blackboard, they all right.  They can write perfectly well. So all this helps us to understand that it is actually much more complex than a computer–that there are motor-programming problems within the basal ganglia, and, if something goes wrong there, the action will be abnormal. That area also governs the normal posture of different parts of the body, so if that program goes wrong and it decides that the neck should be twisted, then unfortunately the brain would have to listen to this program. So we believe that it is probably a biochemical abnormality, but even that conclusion is  standing on shaky grounds. Because right now if you believe in the connections, maybe the  biochemical substance there is correct but the connections are wrong.  but the theory about this biochemical imbalance is that, in some  patients with dystonia, you can improve the  dystonia by giving them therapeutic agents  like anti-cholinergic drugs, and therefore we think that it may be a biochemical imbalance. But unfortunately not all patients respond to the same drugs.  A well-known example is that –if you know the transmitter called dopamine for Parkinson’s disease–some patients respond very  well to dopamine, that is, a drug that enhances dopamine.  But some other patients respond to drugs that oppose dopamine, and so we are completely at a loss.  We are confused.  Drugs that work in totally different directions can be beneficial in one patient and vice versa in another patient, and it is only dopamine. The we come to talk about cholinergic substances.  People have been using anti-cholinergic drugs, and there has been a report on cholinergic substances–that is again a different direction–that work well in the same kind of illness.  The more convincing issue  is that some patients with neck dystonia can come with a history that initially the head turns to the left and after a while turns to the right.  So we don’t really know what everything means.  In writer’s cramp, for example, some patients will start off having problems  with the right hand, then shift to the use of the left hand to write.  A small proportion of these patients actually after years develop the same problem in the other hand.  This also helps to support the fact that it may be a central problem rather than a more peripheral problem.  the theories are not very well founded.  It could be a biochemical imbalance, but I suspect that in some patients, particularly in specific problems, it may be something more subtle than a biochemical imbalance. Well, if you don’t know what causes dystonia, or if it has more than one possible cause, how can you treat it?   Or do you sometimes have to say, "You will just have to live with it"? Anything short of knowledge of the underlying cause we really cannot provide a cure for the condition.   Symptomatic treatments for the condition with all the medications have been very unsatisfactory.  Most patients get temporary relief but the side-effects are so bad that most of them would finally give up the medications, and therefore  it is not good at all. Although it is not a cure, botulinum toxin provides a very good symptomatic relief for many patients.  It has provided at least  some hope and also given the doctors something to do to help  the patient.  And that actually significantly improved the awareness of the condition.  Lots of research has been done, and the funding agencies have paid more attention to funding research in dystonia.  Botulism: the first reported case was in 1897.  The word comes from the Latin word for sausages-food poisoning from sausages,  bad sausage. Two types of neurotoxins have been identified initially-type A and type B neurotoxin.  More and more protein types of the toxin have  been found-to 1970 up to 7 types described: A, B, C, D, E, F, G (C further subdivided into I and 2).  In 1924 the bacterium was finally given a name, clostridium botulinum.  All neurotoxins are inactivated by boiling, and only A, B, E, F have been shown to give rise to human clinical botulism.  Only type A has been a marketed drug, though type F was recently investigated and shown to be effective in patients who have grown resistant to type A; the duration of effectiveness was much shorter weeks rather than months.  Type B toxin  is currently being investigated in a multi-center study. What the toxin does in the body is to go to a junction between  nerves and muscles, and it blocks the impulses between nerves and muscles.  Normally what happens is that, when you want the arm to move or want to contract a certain muscle of the arm,  your brain sets off an electrical impulse that is conducted by a  nerve like a piece of wire right down to the junction between the nerve and the muscle. But it is not electricity that goes through  to the muscle. At the end of the nerve it releases a chemical, and that chemical goes on to tell the muscle to contract.   Botulinum toxin actually stops this process.  It prevents the  release of this chemical from the nerve endings and as a result  it gives rise to paralysis or weakness of the muscle, depending  on the dose.  The toxin attaches itself to the nerve terminals; it is something like ingested by the nerve terminal and then within the nerve cell it exerts its action to prevent the release of the substance called acetylcholine. About the history of the toxin I think full credit has to be given  to Alan Scott, who collaborated with the bacteriologist Edward  Shantz.  They worked together in the development of the toxin.   Alan Scott is an ophthalmologist in San Francisco.  He had been  always longing to develop a method to replace surgery to treat a condition called strabismus, which is a condition of crossed eyes in children.  In these children the eyes actually look in different directions, and the way to help them is to cut away one muscle  that pulls the eye to one side and therefore the eyes can be restored to look straight ahead. This procedure, he thought, might be replaced by an injection of a substance which could temporarily weaken the muscle.  As the child growsup, the condition may be self-correcting, so if they are left with a normal muscle they probably will end up better.  He had been working on that, and in 1973 in a publication we found out that this botullnum toxin A had been able to do that.  That is, the substance is quite safe.  It does not produce any generalized bad reactions.  It does not produce any local reactions, and it can also give rise to a rather predictable weakness for a period of time, ranging from several months up to eight months in the monkey.  With that he worked on to actually apply it in the human, and in 1980 he made the

… read more »

Response:

(GGMCJP) writes: Stress and dystonia is wierd for me.  There are times when, under great stress,

that my spasms are not any worse at all; then at other times, with the same

level of stress, by spasms go bozonkers! Take care- Gina I am also that way.  There have been moments when people would of thought I’d be jerking/spasms really bad and I’m cool.  Then something else comes up and wammo. Thats the problem you just never know for sure.  And, at times I can’t recall anything in particular happening and wammo!  Where not boring, thats for sure! Anne

Response:

Hi Teresa, Do you happen to know ‘off hand’ if a person would qualify if they (me) are receiving a ‘widows pension’? Even though I’ve remarried, I still receive this income from my late husband’s place of employment.  I worked for over 20 years, but haven’ worked in the last 4 years. Just curious, but probably need to contact my local SSD office. Thanks in advance, should you have any info on this! Gina – Hide quoted text — Show quoted text – Mary Beth, You cannot be working at all to apply and get SSI and SSD.  However, once you get it you can get up $499.99 per month working part-time.  So whatever you do, file before you go back to work.  That is what I am going to try to do.  If I finally get it, work part time, if I can.   Teresa

Response:

MB your SSD is Social Security Disability that you will be entitled to from so many quarters you’ve worked (nothing to do with income) but, SSI, depends on income–Jimmy and I together make too much so I can’t get it. When I get 65 yrs old, My SSD will just turn into Social Security and my employer disability insurance stops completely and retirement starts.  If you aren’t sure, you might better start out part-time—-full-time is very hard if you’re in a lot of pain especially–or, you may just not have the energy to work full time.  Something to think about, though.  My MDS says that I’ll never work again, even though I already knew it. Love Ya, Tommye – Hide quoted text — Show quoted text – Mary Beth, I’d think that starting out part time would be a good idea. If you’re doing well, you can always increase your hours, days and workload.  It’s much more difficult to begin with full time work and then have to cut back. Also, IMO I think this might be a less stressful approach. Take care = Gina Please excuse some ‘outloud’ processing here, my friends…but does all this posting regarding how difficult working full-time can be, mean that I maybe need to reconsider my stubborn determination to return to working full-time after 8 years of ‘freedom’?  Maybe I should consider part-time?  If it were true, and I am NOT admitting to that, I can no longer maintain the stamina of working, would I be able to qualify for SSD or SSI or does one have to be without resources in order to do this? I can’t believe that I am actually writing this and sending it even…OY! MB Gene, before I quit work, it was almost too much for me, too!!  I really worked longer than I should have tried to-was in constant horrible pain, having to take pain med in order to even work and getting reprimanded for taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I finally just broke down and knew that I couldn’t go any farther…..then, my supervisor called me that night to see how I was doing and if I thought I’d be at work the next morning. LOL  then, I told her that I wasn’t coming back that I had finally give up—that was a terrible feeling, but, yes, stress plays a major role in dystonia!!!

Response:

Mary Beth, You cannot be working at all to apply and get SSI and SSD.  However, once you get it you can get up $499.99 per month working part-time.  So whatever you do, file before you go back to work.  That is what I am going to try to do.  If I finally get it, work part time, if I can.   Teresa

Response:

Yes, Yes, Gene, we will win this war against dystonia!!!  The only way that we can and are even supposed to live is one day at a time and hope and pray for a cure—if not in our generation, then, the next one for sure!!  but, I’m looking for it to happen in our generation, aren’t you??? Love Ya, Tommye – Hide quoted text — Show quoted text – Gene, before I quit work, it was almost too much for me, too!!  I really worked longer than I should have tried to-was in constant horrible pain, having to take pain med in order to even work and getting reprimanded for taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I finally just broke down and knew that I couldn’t go any farther…..then, my supervisor called me that night to see how I was doing and if I thought I’d be at work the next morning. LOL  then, I told her that I wasn’t coming back that I had finally give up—that was a terrible feeling, but, yes, stress plays a major role in dystonia!!! Love Ya, Tommye Having read  the above, it brought back so many memories. Strange how we squirrel away  bad moments!  It  seems to  over shadow all  good recollections. I was listening to a scientist philosopher type talk about the mind yesterday.  And, he made reference to the very subject.   According to him, it seems that the moment we are born, it’s downhill from there  because there are so many diseases,  and potential for accidents, etc. It’s as if all the odds were against us. But, it says something about the human spirit  doesn’t it?   People  with dystonia are survivors.  We will win this war, even though many battles have been lost, in the end, we will win.  The trick is to  never give up, there is always another day ahead, and it might just be the day that a cure is discovered. Gene http://personal.nbnet.nb.ca/ev or http://personal.nbnet.nb.ca/ev/index.html

Response:

Hey Tommye Girl!! Did I miss something here? Gina – Hide quoted text — Show quoted text – OK "Miss SuzyQ", you beat me to it this time, but have you found out yet what are "facets"??  ROFLOL  If I have any, mine must not be working, either!! LOL  couldn’t be "faucets" could it??  I’ve got many of those!! Harry and Charlie!!! (ref: Ralph and Louie) LOL Love Ya, Tommye I am going to try to beat Tommye to this one, Teresa!  What are facets? Do they fasten your ribs to the rest of you?  Do they hook your knees to your legs? I do not think I have any facets, could be my problem–LOL–Sue

Response:

Gene, You are just a fountain of information – don’t know what we’d do without you! Thanks for all the website(s) information on just about everything. Gina Hi Dan, So sorry about the Botox B not working.  This is just so frustrating!   I’m sorry to ask this if you’ve already posted about it, but have you tried the new batch of Botox A?  I’ve been ‘botoxed’ with the old A and found it to be pretty useless for me.  But (for me) this new batch of ‘A’ is just so awesome! I hope there are others out there who have seen good results with the new A, and others yet, who will try it. Stress and dystonia is wierd for me.  There are times when, under great stress, that my spasms are not any worse at all; then at other times, with the same level of stress, by spasms go bozonkers! Take care- Gina – Hide quoted text — Show quoted text – Hi gang, It has been awhile since I posted.  No luck with Botox B for me.   Sorry to read  this, Andy.  I hadn’t heard from you  for a while and figured everything was okay.   You mentioned stress.  I  found stress  was "the great exacerbater" of muscle spasms, so much so, that I had to  stop working.   I am an accountant by profession. On a few occasions, I thought of returning back to work and,  every time, memories of what it was like at the office made me turn into a cold sweat. Dystonia  made my life  miserable, I think that at one point, at least this is what a psychologist mentioned, there was a danger of suicide.  Living this way,  in constant pain, and the pressures  at work,  was   too  much. Sorry for bringing this up, but if there are any out there who feel this way, and feel guilty about  having second thoughts regarding  their careers,  my advice to you is don’t feel this way.   Dystonia is a serious syndrome, don’t let anyone tell you differently. Regarding Phenol, I think you may find what you are looking for at: http://www.rehabnet.com/monographs/nblock.htm Regards, Gene http://personal.nbnet.nb.ca/ev or http://personal.nbnet.nb.ca/ev/index.html

Response:

Teresa,  thanks for the information…. I swear I had never heard of such a thing but I bet mine are beauts in my neck!   Sue

Response:

Gene, before I quit work, it was almost too much for me, too!!  I really worked longer than I should have tried to-was in constant horrible pain, having to take pain med in order to even work and getting reprimanded for taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I finally just broke down and knew that I couldn’t go any farther…..then, my supervisor called me that night to see how I was doing and if I thought I’d be at work the next morning. LOL  then, I told her that I wasn’t coming back that I had finally give up—that was a terrible feeling, but, yes, stress plays a major role in dystonia!!! Love Ya, Tommye

Having read  the above, it brought back so many memories. Strange how we squirrel away  bad moments!  It  seems to  over shadow all  good recollections. I was listening to a scientist philosopher type talk about the mind yesterday.  And, he made reference to the very subject.   According to him, it seems that the moment we are born, it’s downhill from there  because there are so many diseases,  and potential for accidents, etc. It’s as if all the odds were against us. But, it says something about the human spirit  doesn’t it?   People  with dystonia are survivors.  We will win this war, even though many battles have been lost, in the end, we will win.  The trick is to  never give up, there is always another day ahead, and it might just be the day that a cure is discovered. Gene http://personal.nbnet.nb.ca/ev or http://personal.nbnet.nb.ca/ev/index.html

Response:

Please excuse some ‘outloud’ processing here, my friends…but does all this posting regarding how difficult working full-time can be, mean that I maybe need to reconsider my stubborn determination to return to working full-time after 8 years of ‘freedom’?  Maybe I should consider part-time?  If it were true, and I am NOT admitting to that, I can no longer maintain the stamina of working, would I be able to qualify for SSD or SSI or does one have to be without resources in order to do this? I can’t believe that I am actually writing this and sending it even…OY! MB Gene, before I quit work, it was almost too much for me, too!!  I really

worked longer than I should have tried to-was in constant horrible pain,

having to take pain med in order to even work and getting reprimanded for

taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I

finally just broke down and knew that I couldn’t go any farther…..then,

my supervisor called me that night to see how I was doing and if I thought

I’d be at work the next morning. LOL  then, I told her that I wasn’t coming

back that I had finally give up—that was a terrible feeling, but, yes,

stress plays a major role in dystonia!!!

Response:

OK "Miss SuzyQ", you beat me to it this time, but have you found out yet what are "facets"??  ROFLOL  If I have any, mine must not be working, either!! LOL  couldn’t be "faucets" could it??  I’ve got many of those!! Harry and Charlie!!! (ref: Ralph and Louie) LOL Love Ya, Tommye – Hide quoted text — Show quoted text – I am going to try to beat Tommye to this one, Teresa!  What are facets? Do they fasten your ribs to the rest of you?  Do they hook your knees to your legs? I do not think I have any facets, could be my problem–LOL–Sue

Response:

Hi, I’m sorry that you had to quit work today.  I was diagnosed with Dystonia July 1996 and was terminated by my employer in September 1997 because I was unable to perform by duties.  The pain is so bad not to mention the embarrassment.  I wish you lots of luck.  Have you applied for disability?

Response:

Wasn’t it also a major relief to finally say "Enough"? Gina – Hide quoted text — Show quoted text – Gene, before I quit work, it was almost too much for me, too!!  I really worked longer than I should have tried to-was in constant horrible pain, having to take pain med in order to even work and getting reprimanded for taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I finally just broke down and knew that I couldn’t go any farther…..then, my supervisor called me that night to see how I was doing and if I thought I’d be at work the next morning. LOL  then, I told her that I wasn’t coming back that I had finally give up—that was a terrible feeling, but, yes, stress plays a major role in dystonia!!! Love Ya, Tommye Hi gang, It has been awhile since I posted.  No luck with Botox B for me.   Sorry to read  this, Andy.  I hadn’t heard from you  for a while and figured everything was okay.   You mentioned stress.  I  found stress  was "the great exacerbater" of muscle spasms, so much so, that I had to  stop working.   I am an accountant by profession. On a few occasions, I thought of returning back to work and,  every time, memories of what it was like at the office made me turn into a cold sweat. Dystonia  made my life  miserable, I think that at one point, at least this is what a psychologist mentioned, there was a danger of suicide.  Living this way,  in constant pain, and the pressures  at work,  was   too  much. Sorry for bringing this up, but if there are any out there who feel this way, and feel guilty about  having second thoughts regarding  their careers,  my advice to you is don’t feel this way.   Dystonia is a serious syndrome, don’t let anyone tell you differently. Regarding Phenol, I think you may find what you are looking for at: http://www.rehabnet.com/monographs/nblock.htm Regards, Gene http://personal.nbnet.nb.ca/ev or http://personal.nbnet.nb.ca/ev/index.html

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Yes, Gina, goma doll, it surely was!!  the next day I started paperwork for my employee disability, as my district supervisor came to my house and brought all of the paperwork, we filled everything out, and it was just final–so fast!!  then I got pay for short term disability, built up sick days and 3 weeks vacation!!  and was able to keep my hospital ins. until I’m 65 by paying it myself and they were real great….they let me keep $10,000 of $80,000 life insurance that I had.  Of course, they still have my retirement, I’m considering getting out and putting into something else because if I didn’t, Jimmy will only get half of it, if I don’t get it out!!  It was a wonderful releif to know that I wouldn’t have to sit there 8-9 hrs a day with my head down all day–at about 2:00 every afternoon, the pain was horrible from then on the rest of the day. Love Ya, Tommye – Hide quoted text — Show quoted text – Wasn’t it also a major relief to finally say "Enough"? Gina Gene, before I quit work, it was almost too much for me, too!!  I really worked longer than I should have tried to-was in constant horrible pain, having to take pain med in order to even work and getting reprimanded for taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I finally just broke down and knew that I couldn’t go any farther…..then, my supervisor called me that night to see how I was doing and if I thought I’d be at work the next morning. LOL  then, I told her that I wasn’t coming back that I had finally give up—that was a terrible feeling, but, yes, stress plays a major role in dystonia!!! Love Ya, Tommye Hi gang, It has been awhile since I posted.  No luck with Botox B for me.   Sorry to read  this, Andy.  I hadn’t heard from you  for a while and figured everything was okay.   You mentioned stress.  I  found stress  was "the great exacerbater" of muscle spasms, so much so, that I had to  stop working.   I am an accountant by profession. On a few occasions, I thought of returning back to work and,  every time, memories of what it was like at the office made me turn into a cold sweat. Dystonia  made my life  miserable, I think that at one point, at least this is what a psychologist mentioned, there was a danger of suicide.  Living this way,  in constant pain, and the pressures  at work,  was   too  much. Sorry for bringing this up, but if there are any out there who feel this way, and feel guilty about  having second thoughts regarding  their careers,  my advice to you is don’t feel this way.   Dystonia is a serious syndrome, don’t let anyone tell you differently. Regarding Phenol, I think you may find what you are looking for at: http://www.rehabnet.com/monographs/nblock.htm Regards, Gene http://personal.nbnet.nb.ca/ev or http://personal.nbnet.nb.ca/ev/index.html

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Well, I thought if Ralph is "right" and Louie is "left" then, Charlie would be "cold water" and Harry would be "hot water"–LOL  make any sense??? thought not, as I’m on one of my crazy "modes"!!! Love Ya, Tommye – Hide quoted text — Show quoted text – Hey Tommye Girl!! Did I miss something here? Gina OK "Miss SuzyQ", you beat me to it this time, but have you found out yet what are "facets"??  ROFLOL  If I have any, mine must not be working, either!! LOL  couldn’t be "faucets" could it??  I’ve got many of those!! Harry and Charlie!!! (ref: Ralph and Louie) LOL Love Ya, Tommye I am going to try to beat Tommye to this one, Teresa!  What are facets? Do they fasten your ribs to the rest of you?  Do they hook your knees to your legs? I do not think I have any facets, could be my problem–LOL–Sue

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Mary Beth, I’d think that starting out part time would be a good idea. If you’re doing well, you can always increase your hours, days and workload.  It’s much more difficult to begin with full time work and then have to cut back. Also, IMO I think this might be a less stressful approach. Take care = Gina – Hide quoted text — Show quoted text – Please excuse some ‘outloud’ processing here, my friends…but does all this posting regarding how difficult working full-time can be, mean that I maybe need to reconsider my stubborn determination to return to working full-time after 8 years of ‘freedom’?  Maybe I should consider part-time?  If it were true, and I am NOT admitting to that, I can no longer maintain the stamina of working, would I be able to qualify for SSD or SSI or does one have to be without resources in order to do this? I can’t believe that I am actually writing this and sending it even…OY! MB Gene, before I quit work, it was almost too much for me, too!!  I really worked longer than I should have tried to-was in constant horrible pain, having to take pain med in order to even work and getting reprimanded for taking med at work.  I gave it up (work) at 2:30 on a Mon afternoon-I finally just broke down and knew that I couldn’t go any farther…..then, my supervisor called me that night to see how I was doing and if I thought I’d be at work the next morning. LOL  then, I told her that I wasn’t coming back that I had finally give up—that was a terrible feeling, but, yes, stress plays a major role in dystonia!!!

Response:

– Hide quoted text — Show quoted text – Article: 8240 of alt.support.dystonia Path: betanews.compulink.co.uk!news.cix.co.uk!not-for-mail Newsgroups: alt.support.dystonia Organization: CIX – Compulink Information eXchange Lines: 5 NNTP-Posting-Host: oare.compulink.co.uk Xref: betanews.compulink.co.uk alt.support.dystonia:8240 Just re-joined this conference after a break. My son has been told that he will be part of a trial of Botox B in the UK, having become immune to Botox A. What is the current opinion about the effectiveness of Botox B? Barry

Anyone suggest where I should look to find more about Botox B please? Barry

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Just re-joined this conference after a break. My son has been told that he will be part of a trial of Botox B in the UK, having become immune to Botox A. What is the current opinion about the effectiveness of Botox B? Barry

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I had Bot B injx last month.  I, too,  was more sore than with Botox A.  I think there is a lot more of the Bot B solution that has to be injected so this may explain part of it.   Also, seems like they missed a muscle and hit my salivary gland, as I’ve had almost no saliva since the toxin kicked in.  They called it a "side effect". Oh, well.   Given this torture, its still worth it so far. – Hide quoted text — Show quoted text – I wrote a message about Myobloc, but maybe its the wrong name.  I just got the new Botox injections.  I am really sore and having strange feelings. Wondered how anyone else felt. I have read many posts of people trying the Myobloc and none of them seems satisfied with it yet.  Can’t help but wonder if the doctors should have experimented a little more with it.  Hope you soon start to feel better. Good luck,  Anna

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I have had the same problem after injections in my neck ,side effects of Botox …during about one week and it was finished . Eat and drink in the same time , not very polite ,but we have to survive ! marie:) LaBeeJay a