Question:

try getting doc to Rx Nystatin Mouthswish – Hide quoted text — Show quoted text – I have been using Flovent 220(oral corticosteroid) for about a year and swishing as directed but I continue to have some level of thrush in my mouth. I use water and Scope mouthwash. Anyone have a better idea? Thanks Jack

Response:

: : doesn’t even really work), get my Dr. to prescribe an oral dose of 150 : mg Diflucan, a anti-fungal designed to treat women’s yeast infections, : but it works wickedly well on my thrush too.  My Dr. has now given me a : standing prescription for Diflucan. Good luck….. : and when the Diflucan stops working, there is a swish and swallow called Fungizone…tastes awful, but it works — Peace, Tish Dreaming permits each and every one of us to be quietly and safely insane every night of our lives.-Charles Fisher

Response:

Mycelex Troches (5/day) works every time for me.  I can’t take the oral anti-fungals because they crank up the liver enzymes! Jan

Response:

Has anyone else tried apple cider vinegar for candida thrush? when i use it works great (although i don’t always use it) either rinse with applecider vinegar and water or rinse with water than drink a glass of water with apple cider vinegar and honey. Catriona

Response:

I have been using Flovent 220(oral corticosteroid) for about a year and swishing as directed but I continue to have some level of thrush in my mouth. I use water and Scope mouthwash. Anyone have a better idea? Thanks Jack

Jack, I constantly have/had problems with thrush from my oral steroids until I hit upon the following combination….  – rinse my mouth twice daily with 2 drops of tea tree oil in water (warning, tea tree oil seems to trigger some asthmatics)  – eat at least 250 grams (small container) of yougurt with natural bifidalfous (sp?) bacteria in it daily.   You can get these bacteria in "capsule" form from drug stores and health food stores as acidophus.   — every 4 weeks when this regieme breaks down (who knows, maybe it doesn’t even really work), get my Dr. to prescribe an oral dose of 150 mg Diflucan, a anti-fungal designed to treat women’s yeast infections, but it works wickedly well on my thrush too.  My Dr. has now given me a standing prescription for Diflucan. Good luck…..

Response:

Although Flovent worked well for me, I had constant thrush, even if I rinsed with water and mouthwash immediately.  My doctor switched me to Pulmicort, which is a breath activated dry powder inhaler.  Although I still occasionally get thrush, it has not been as bad as Flovent.  And Pulmicort seems to work.  No attacks since October, and I had been having one every two months. ALS – Hide quoted text — Show quoted text – I have been using Flovent 220(oral corticosteroid) for about a year and swishing as directed but I continue to have some level of thrush in my mouth. I use water and Scope mouthwash. Anyone have a better idea? Thanks Jack

Response:

writes I have been using Flovent 220(oral corticosteroid) for about a year and swishing as directed but I continue to have some level of thrush in my mouth. I use water and Scope mouthwash. Anyone have a better idea?

Talk to your doctor about using a spacer for the Flovent (I’m assuming that it’s an MDI type) – that may help prevent further bouts of thrush once you’ve got it under control. In the meantime, try an anti-fungal mouthwash – if your doctor can’t recommend one, see what your dentist can come up with ! Chris — Chris King                    | Information provided here should NOT be used http://www.csking.demon.co.uk | practitioner.

Response:

I have been using Flovent 220(oral corticosteroid) for about a year and swishing as directed but I continue to have some level of thrush in my mouth. I use water and Scope mouthwash. Anyone have a better idea? Thanks Jack

Response:

Question:

At 3 puffs of Flovent 110 daily (i.e. daily dose of 330 mcg.), I experience significant dysphonia ( hoarseness) At 2 puffs of Flovent 220 daily (i.e. daily dose of 440 mcg.), I experience no dysphonia I have observed this repeatedly over 2 years of daily use. Has anyone else had this experience? Perhaps others with dysphonia on Flovent 110 might try the 220. —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

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Hi, that certainly is a very interesting piece of information, and I am eager to try this "experiment".  Thanks for sharing.

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Question:

Hi. I am female, and have had severe asthma for 30yrs. I am looking to connect with anyone who has had severe asthma (frequent hospital emergency visits, multiple daily steroid and flovent use) and has found any tangible means, other than flovent and steroid use, to lessen its severity. I know my triggers well, and controlling them has minimal effect-I can’t live in a bubble. Does someone have a personal victory to share? Thanks, S

Hiya – Im 32, and Im presently disabled for asthma, but I am to the point now (after 3 years) where I can have a life, and going out the door doesnt mean Im going to have an attack. I take Proventil inhaler, albuterol + Atrovent in the neb, flovent, serevent, prednisone 15mg, claritin and prilosec.  It took a LONG time for the Flovent and Serevent combo to get me down to 15mgs on the prednisone.  At one point I was up to 60/day.   Right before I went on disability I was going to the ER at least once a week, it was awful.  The first year on disability was really pretty bad too.  But little by little I have gotten better.  Could I go back to work?  I’m not sure, especially since I was a chef.  Plus, who would hire me with my history? I can tell you that the Flovent Serevent combo really has worked for me and I seem to have very drug-resistant asthma, not a lot of the new stuff works for me, like Singulair, Accolate, they did nothing. I wish you the best of luck. Life is uncertain – eat dessert first. Nancy 8=: )

Response:

Hi. I am female, and have had severe asthma for 30yrs. I am looking to connect with anyone who has had severe asthma (frequent hospital emergency visits, multiple daily steroid and flovent use) and has found any tangible means, other than flovent and steroid use, to lessen its severity. I know my triggers well, and controlling them has minimal effect-I can’t live in a bubble. Does someone have a personal victory to share? Thanks, S

Response:

test

– Hide quoted text — Show quoted text – Hi. I am female, and have had severe asthma for 30yrs. I am looking to connect with anyone who has had severe asthma (frequent hospital emergency visits, multiple daily steroid and flovent use) and has found any tangible means, other than flovent and steroid use, to lessen its severity. I know my triggers well, and controlling them has minimal effect-I can’t live in a bubble. Does someone have a personal victory to share? Thanks, S

Response:

Question:

6% would be skin and bones. Steve Freides:

To follow up on this, I contacted a friend of mine who is into competitive body building and his weight is 262lbs with a body fat of 5.5%. The present competitor for the state title has a body fat of 5.3% Suggest you do your homework before making rash statements.

Response:

Unless you, too, are a competitive body builder peaking for a competition, you might answer my previous posting that asked who measured you and how.  I don’t doubt that people exist with 6% body fat – I’ve seen people with 2% body fat.  I’m just trying to ascertain how accurate your pronouncement may or may not be and, given that, as you’ve confirmed, 6% is a figure typical of a body builder and that I know it’s extremely atypical for the general population, I prefer to remain skeptical until you’ve convinced me. -S- – Hide quoted text — Show quoted text – 6% would be skin and bones. Steve Freides: To follow up on this, I contacted a friend of mine who is into competitive body building and his weight is 262lbs with a body fat of 5.5%. The present competitor for the state title has a body fat of 5.3% Suggest you do your homework before making rash statements.

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They pinch your skin and measure it with it with an instrument like caliphers.

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, I prefer to remain skeptical until you’ve convinced me

Me convincing you is the least of my concerns. Believe what you want to and keep it to yourself.

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– Hide quoted text — Show quoted text – 6% would be skin and bones. Steve Freides: To follow up on this, I contacted a friend of mine who is into competitive body building and his weight is 262lbs with a body fat of 5.5%. The present competitor for the state title has a body fat of 5.3% Suggest you do your homework before making rash statements.

Isn’t it about time to take this pissing contest back into the locker room and out of public space?     Lp

Response:

The Bowman’s 6% would be very unusual if it were true. Let’s get one thing straight. I don’t lie period! This 6% was given to me by the wellness center where I exercise. The 6% was given to me by the exercise dept at the wellness

How did the wellness folks test you?  Skinfold calipers?  Underwater weighing?  An electronic scale?  Body Mass Index? Although we’re off our main topic here, I would be glad to comment on the accuracy of those methods. -S-

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Just teasing you Bowman.  

Bob I like good humor and joking but I don’t like someone to insinuate that I am a liar when I can’s face him.

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Just teasing you Bowman.   Bob I like good humor and joking but I don’t like someone to insinuate that I am a liar when I can’s face him.

I’m with you Bowman.

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Mime-Version: 1.0 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit The Bowman’s 6% would be very unusual if it were true.

Ted Edwards responded: I was also very surprised at that.  I am a long thin type and have weighed the same +/-5 lbs since I was 21 (I’m now 67).  A doctor friend who is heavily into sports medicine claimed he estimated me at 10% body fat.  6% would be skin and bones.

Steve Freides: Denice, if you’d like some advice regarding your diet and exercise, I suggest you try the newsgroups devoted to that.  There are a few under misc.fitness.

Ted Edwards: There is a lot of good stuff on the www but one needs to keep their used hay filter fully operational! Ted

I too have narrow dimensions but have never had my body fat percentage measured or estimated.  180 cm tall (71"), weigh 48 kg (106#), but was up to 65 kg in early adulthood.  I figure my fat reserve must be very low. I see there are some alt.support.diet.* newsgroups.

Response:

Let’s get one thing straight. I don’t lie period! This 6% was given to me by the wellness center where I exercise. The 6% was given to me by the exercise dept at the wellness

I know people who have similar amounts of body fat.  It is uncommon but not unusual. "It’s not American foreign policy, or the plight of the Palestinians, or America’s longstanding support for Israel. A group of people with money and weaponry have simply decided that we, as a civilization, are unfit to live, and want, eventally, to exterminate us." ‘Christian Century’ magazine

Response:

The Bowman’s 6% would be very unusual if it were true.

I was also very surprised at that.  I am a long thin type and have weighed the same +/-5 lbs since I was 21 (I’m now 67).  A doctor friend who is heavily into sports medicine claimed he estimated me at 10% body fat.  6% would be skin and bones. Denice, if you’d like some advice regarding your diet and exercise, I suggest you try the newsgroups devoted to that.  There are a few under misc.fitness.

There is a lot of good stuff on the www but one needs to keep their used hay filter fully operational! Ted

Response:

The Bowman’s 6% would be very unusual if it were true.

Let’s get one thing straight. I don’t lie period! This 6% was given to me by the wellness center where I exercise. The 6% was given to me by the exercise dept at the wellness

Response:

The Bowman’s 6% would be very unusual if it were true. Let’s get one thing straight. I don’t lie period! This 6% was given to me by the wellness center where I exercise.

Down Bowman!  We believe you.  We believe you. Winter is approaching Bowman.  You might consider bolstering your greater omentum and subcutaneous fat stores to give you a little more healthy reserve.  

Response:

might consider bolstering your greater omentum and subcutaneous fat stores to give you a little more healthy reserve.  

Bob, I like my lean mean machine.

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might consider bolstering your greater omentum and subcutaneous fat stores to give you a little more healthy reserve.   Bob, I like my lean mean machine.

Good, because halloween is almost upon us, and just think, you don’t have to decide what costume to wear.  You can go as a skeleton! (Just teasing you Bowman.  I envy your body fat percentage.  Mine always seems to push the envelope at 25%.)

Response:

The important thing is to maintain a healthy body fat percentage. Colin, what is a correct percentage? mine is 6% body fat.

Here are some links: http://www.shapeup.org/bodylab/basics/know3.asp http://www.healthchecksystems.com/bodyfat.htm http://www.he.net/~zone/prothd2.html "It’s not American foreign policy, or the plight of the Palestinians, or America’s longstanding support for Israel. A group of people with money and weaponry have simply decided that we, as a civilization, are unfit to live, and want, eventally, to exterminate us." ‘Christian Century’ magazine

Response:

- Hide quoted text — Show quoted text – Pulmicort 200 mcg. 1 inhale, twice daily.  I also do Combivent ( 2 puffs, 2x a day) and Serevent Diskus..along with Rhinocort Aqua & Singulair for 2 yrs. now.  I initially lost some weight (not much)..and don’t by habit get on the scale.  But then you have the weigh-in’s at the PCP’s and they always find a way of "blurting" it out.  At least this new doctor does.  I exercise 5 days a week for 35-40 minutes and don’t sit all day and eat.  Because of also having a cholesterol problem I am conscience of labels and portions as best as I can.  I know my Allergist has suggested that I stop the Pulmicort and have once..not a good experience!  And have tried to go to a once daily dose with no luck.  I need to exercise but don’t want to suffer trying.  It was just a jolt and am feeling frustrated. You are aware that exercise builds weight because muscle is more dense than fat.

Please tread very lightly here.  From reading much research and based on much experience, both personal and that of friends and family I have helped, I can tell you that adding muscle mass is very difficult to do for most healthy adult males, and orders of magnitude more difficult to do for a female (which, I presume, "Denice" is).  Unless one eats very carefully and works out just the right way, muscle mass gain simply does not happen for the overwhelming majority of the adult population.  The appearance of more muscle is not uncommon in those new to exercise, particularly those who have lost some body fat, but the reality of increased lean muscle mass is different than the appearance of more residual muscle tension in what are essentially the same size muscles now covered in a little less fat. People you see who bulge muscle quite often take anabolic steroids to get that way, too. Denice’s experience is quite common – an initial weight loss at the beginning of an exercise program, then the weight returns as the body adapts.  Keeping the body losing weight through exercise after the first few months requires different things than it does at the beginning. Your weight is not that important.  The important thing is to maintain a healthy body fat percentage.

The Bowman’s 6% would be very unusual if it were true.  That’s often what a professional (read: usually drug using) body builder would achieve in preparation for a competition but could not maintain year-round. Denice, if you’d like some advice regarding your diet and exercise, I suggest you try the newsgroups devoted to that.  There are a few under misc.fitness. Steve "regular on misc.fitness.weights and alt.sport.weightlifting"

Response:

spake thusly: Has anyone had a weight gain while starting or being on inhaled corticosteroids? Denice

Therer are dozens and dozens of studies indicating that, while inhaled corticosteroids do carry a small chance of producing systemic efects, weight gain was never observed as a direct result of usage.  Far more common are things such as thrush mouth, etc.

Response:

The important thing is to maintain a healthy body fat percentage.

Colin, what is a correct percentage? mine is 6% body fat.

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- Hide quoted text — Show quoted text – Has anyone had a weight gain while starting or being on inhaled corticosteroids? The manufacturer’s product literature for Flovent states that while systemic side effects weren’t observed during clinical trials, post-marketing experience of some patients reported weight gain, as well as other systemic side effects. Inhaled steroids do carry some risk of systemic side effects that can resemble some of the side effects of oral steroids.  Especially in large doses.  And some folks may be more sensitive to systemic side effects than others. Which inhaled steroid are you using?  What dose, and for how long? — Steven D. Litvintchouk Pulmicort 200 mcg. 1 inhale, twice daily.  I also do Combivent ( 2 puffs, 2x a day) and Serevent Diskus..along with Rhinocort Aqua & Singulair for 2 yrs. now.  I initially lost some weight (not much)..and don’t by habit get on the scale.  But then you have the weigh-in’s at the PCP’s and they always find a way of "blurting" it out.  At least this new doctor does.  I exercise 5 days a week for 35-40 minutes and don’t sit all day and eat.  

One way that oral steroids can cause weight gain, is from salt retention (which in turn causes fluid retention).  Have you tried eating a lower-salt, higher-potassium diet?  That kind of diet can minimize the fluid retention side effect of oral steroids. — Steven D. Litvintchouk                  

Response:

I take Pulmicort 1 puff 2 x daily, Flonase and Singulair. My weight remained stable on Pulmicort but has been gradually and noticeably increasing since beginning Singulair about 22 months before. – Hide quoted text — Show quoted text – Has anyone had a weight gain while starting or being on inhaled corticosteroids? The manufacturer’s product literature for Flovent states that while systemic side effects weren’t observed during clinical trials, post-marketing experience of some patients reported weight gain, as well as other systemic side effects. Inhaled steroids do carry some risk of systemic side effects that can resemble some of the side effects of oral steroids.  Especially in large doses.  And some folks may be more sensitive to systemic side effects than others. Which inhaled steroid are you using?  What dose, and for how long? — Steven D. Litvintchouk Pulmicort 200 mcg. 1 inhale, twice daily.  I also do Combivent ( 2 puffs, 2x a day) and Serevent Diskus..along with Rhinocort Aqua & Singulair for 2 yrs. now.  I initially lost some weight (not much)..and don’t by habit get on the scale.  But then you have the weigh-in’s at the PCP’s and they always find a way of "blurting" it out.  At least this new doctor does.  I exercise 5 days a week for 35-40 minutes and don’t sit all day and eat.  Because of also having a cholesterol problem I am conscience of labels and portions as best as I can.  I know my Allergist has suggested that I stop the Pulmicort and have once..not a good experience!  And have tried to go to a once daily dose with no luck.  I need to exercise but don’t want to suffer trying.  It was just a jolt and am feeling frustrated.

Response:

– Hide quoted text — Show quoted text – Has anyone had a weight gain while starting or being on inhaled corticosteroids? The manufacturer’s product literature for Flovent states that while systemic side effects weren’t observed during clinical trials, post-marketing experience of some patients reported weight gain, as well as other systemic side effects. Inhaled steroids do carry some risk of systemic side effects that can resemble some of the side effects of oral steroids.  Especially in large doses.  And some folks may be more sensitive to systemic side effects than others. Which inhaled steroid are you using?  What dose, and for how long? — Steven D. Litvintchouk

Pulmicort 200 mcg. 1 inhale, twice daily.  I also do Combivent ( 2 puffs, 2x a day) and Serevent Diskus..along with Rhinocort Aqua & Singulair for 2 yrs. now.  I initially lost some weight (not much)..and don’t by habit get on the scale.  But then you have the weigh-in’s at the PCP’s and they always find a way of "blurting" it out.  At least this new doctor does.  I exercise 5 days a week for 35-40 minutes and don’t sit all day and eat.  Because of also having a cholesterol problem I am conscience of labels and portions as best as I can.  I know my Allergist has suggested that I stop the Pulmicort and have once..not a good experience!  And have tried to go to a once daily dose with no luck.  I need to exercise but don’t want to suffer trying.  It was just a jolt and am feeling frustrated.

Response:

Pulmicort 200 mcg. 1 inhale, twice daily.  I also do Combivent ( 2 puffs, 2x a day) and Serevent Diskus..along with Rhinocort Aqua & Singulair for 2 yrs. now.  I initially lost some weight (not much)..and don’t by habit get on the scale.  But then you have the weigh-in’s at the PCP’s and they always find a way of "blurting" it out.  At least this new doctor does.  I exercise 5 days a week for 35-40 minutes and don’t sit all day and eat.  Because of also having a cholesterol problem I am conscience of labels and portions as best as I can.  I know my Allergist has suggested that I stop the Pulmicort and have once..not a good experience!  And have tried to go to a once daily dose with no luck.  I need to exercise but don’t want to suffer trying.  It was just a jolt and am feeling frustrated.

You are aware that exercise builds weight because muscle is more dense than fat. Your weight is not that important.  The important thing is to maintain a healthy body fat percentage. "It’s not American foreign policy, or the plight of the Palestinians, or America’s longstanding support for Israel. A group of people with money and weaponry have simply decided that we, as a civilization, are unfit to live, and want, eventally, to exterminate us." ‘Christian Century’ magazine

Response:

Has anyone had a weight gain while starting or being on inhaled corticosteroids? Denice

Response:

Has anyone had a weight gain while starting or being on inhaled corticosteroids?

The manufacturer’s product literature for Flovent states that while systemic side effects weren’t observed during clinical trials, post-marketing experience of some patients reported weight gain, as well as other systemic side effects. Inhaled steroids do carry some risk of systemic side effects that can resemble some of the side effects of oral steroids.  Especially in large doses.  And some folks may be more sensitive to systemic side effects than others. Which inhaled steroid are you using?  What dose, and for how long? — Steven D. Litvintchouk                  

Response:

Question:

sylvain, (&FJ if you’re reading this) been out of town for almost a week, hence the delayed reply. i switched to lexapro at the instigation of my female companion, to reduce the well-known sexual side-effect. in my case, the sexual side-effect was greatly reduced in fact.

  That the sexual sideeffects are reduced so much compared th seroxat    is good news to me. This is what I’m after, a lessening of sideeffects   and the same benefits anxiety wise. Could you make an immediate   shift between the two meds or did you have to cut down the milligrams   slowly and then start on the new med?

Response:

FJ wrote:

  That the sexual sideeffects are reduced so much compared th seroxat    is good news to me. This is what I’m after, a lessening of sideeffects   and the same benefits anxiety wise. Could you make an immediate   shift between the two meds or did you have to cut down the milligrams   slowly and then start on the new med?

Usually you should be able to cut down one med and up the other at the same time but discuss it with your shrink.

Response:

None <i-dont-want-to-receive-any-ma…@swissonline.ch

wrote in message <news:3f5b685f$1@news.swissonline.ch… FJ wrote:   That the sexual sideeffects are reduced so much compared th seroxat    is good news to me. This is what I’m after, a lessening of sideeffects   and the same benefits anxiety wise. Could you make an immediate   shift between the two meds or did you have to cut down the milligrams   slowly and then start on the new med? Usually you should be able to cut down one med and up the other at the same time but discuss it with your shrink.

i actually stopped taking the paxil completely & switched to lexapro the day after i got some. i wasn’t as worried about that as i perhaps should have been, because several times before i had missed one dose of paxil–but made sure i never missed two in consecutive days–and missing one dose didn’t affect me greatly, just made me a little edgy.

Response:

yitwail wrote:

i actually stopped taking the paxil completely & switched to lexapro the day after i got some. i wasn’t as worried about that as i perhaps should have been, because several times before i had missed one dose of paxil–but made sure i never missed two in consecutive days–and missing one dose didn’t affect me greatly, just made me a little edgy.

At times I get all sad if I only miss my Effexor dose by a few hours. At other times I can miss it completely for a day and don’t notice. It’s weird.

Response:

"Sylvain  Van der Walde" <sylvain.vanderwa…@which.net

wrote in message <news:F4F3b.1606$FZ3.430214@newsfep2-win.server.ntli.net…

– Hide quoted text — Show quoted text -

"FJ" <F@J wrote in message news:3f4e34ac$0$19384$d40e179e@nntp05.dk.telia.net… If you’re on 20 Mg, a raise to 40 Mg should do the trick I’ve been on Seroxat (Paxil) for 5-6 years. Sylvain.   Hi Sylvain!   Does this mean that you have to raise the milligrams again and again, untill the   med doesn’t work anymore? FJ. According to the manufacturer; 20 Mg is the minimum therapeutic dosage for SP, and 50 Mg is the maximum. If you get no improvement on 40 Mg, I don’t believe that there’s much point raising it to 50 Mg. It’s 60 Mg max. for OCD, by the way. I would urge you to stick with Seroxat as long as possible, as you just don’t know how the other meds. will work with you. On the other hand, if you want badly enough to change, by all means do so. You could try Celexa (Cipramil, Citalopram) first. Sylvain.

or you could try 30mg before going to 40mg, trying for a little better mileage. i took 30mg for a few years before switching to lexapro. thing to remember about SSRI is that dosage isn’t always linear, meaning doubling the dose doesn’t necessarily double the effect, which can either more than double or increase more moderately, so trial and error is worthwhile.

Response:

i took 30mg for a few years before switching to lexapro. thing to remember about SSRI is that dosage isn’t always linear, meaning doubling the dose doesn’t necessarily double the effect, which can either more than double or increase more moderately, so trial and error is worthwhile.

 How did Lexapro woork for you, compared to seroxat?

Response:

"yitwail" <catim…@yahoo.com

wrote in message

news:cc4558e9.0308291004.781d801e@posting.google.com… > "Sylvain  Van der Walde" <sylvain.vanderwa…@which.net

wrote in message

<news:F4F3b.1606$FZ3.430214@newsfep2-win.server.ntli.net

…

– Hide quoted text — Show quoted text -> > "FJ" <F@J

wrote in message

> > news:3f4e34ac$0$19384$d40e179e@nntp05.dk.telia.net… > > > > If you’re on 20 Mg, a raise to 40 Mg should do the trick > > > > I’ve been on Seroxat (Paxil) for 5-6 years. > > > > Sylvain. > > >   Hi Sylvain! > > >   Does this mean that you have to raise the milligrams again and again,

untill the   med doesn’t work anymore? FJ. According to the manufacturer; 20 Mg is the minimum therapeutic dosage

for

SP, and 50 Mg is the maximum. If you get no improvement on 40 Mg, I

don’t

believe that there’s much point raising it to 50 Mg. It’s 60 Mg max. for OCD, by the way. I would urge you to stick with Seroxat as long as possible, as you just don’t know how the other meds. will work with you. On the other hand, if you want badly enough to change, by all means do

so.

You could try Celexa (Cipramil, Citalopram) first. Sylvain. or you could try 30mg before going to 40mg, trying for a little better mileage.

Yitwail. Yes, of course he could. I tried it myself, but it hardly made any difference. Going to 40 Mg did the trick.

i took 30mg for a few years before switching to lexapro. thing to remember about SSRI is that dosage isn’t always linear, meaning doubling the dose doesn’t necessarily double the effect, which can either more than double or increase more moderately, so trial and error is worthwhile.

Agreed. I have 2 questions: Why did you stop at 30 Mg of Paroxetine (Paxil, Seroxat), and start with Lexapro (Escitalopram) rather than going with Celexa (Citalopram)? I won’t carry on with this thread after this message. Sylvain

Response:

"Sylvain  Van der Walde" <sylvain.vanderwa…@which.net

wrote in message <news:YI_3b.3132$FZ3.672264@newsfep2-win.server.ntli.net… I have 2 questions: Why did you stop at 30 Mg of Paroxetine (Paxil, Seroxat), and start with Lexapro (Escitalopram) rather than going with Celexa (Citalopram)? I won’t carry on with this thread after this message. Sylvain

sylvain, (&FJ if you’re reading this) been out of town for almost a week, hence the delayed reply. i switched to lexapro at the instigation of my female companion, to reduce the well-known sexual side-effect. in my case, the sexual side-effect was greatly reduced in fact. otherwise, i haven’t noticed any significant medical difference between 30mg paxil & 10mg lexapro. lexapro does cost a bit more in the copayment required by my medical insurance.

Response:

If you’re on 20 Mg, a raise to 40 Mg should do the trick I’ve been on Seroxat (Paxil) for 5-6 years. Sylvain.

  Hi Sylvain!   Does this mean that you have to raise the milligrams again and again, untill the   med doesn’t work anymore?

Response:

"FJ" <F@J

wrote in message

news:3f4e34ac$0$19384$d40e179e@nntp05.dk.telia.net…

If you’re on 20 Mg, a raise to 40 Mg should do the trick I’ve been on Seroxat (Paxil) for 5-6 years. Sylvain.   Hi Sylvain!   Does this mean that you have to raise the milligrams again and again, untill the   med doesn’t work anymore?

FJ. According to the manufacturer; 20 Mg is the minimum therapeutic dosage for SP, and 50 Mg is the maximum. If you get no improvement on 40 Mg, I don’t believe that there’s much point raising it to 50 Mg. It’s 60 Mg max. for OCD, by the way. I would urge you to stick with Seroxat as long as possible, as you just don’t know how the other meds. will work with you. On the other hand, if you want badly enough to change, by all means do so. You could try Celexa (Cipramil, Citalopram) first. Sylvain.

Response:

Pretty much all modern anti depressants (SSRI and the newer stuff) should work.

   Thanks for the answer, but do you think that a change will lessen the SP more than the weaned off seroxat

Response:

FJ wrote:

Pretty much all modern anti depressants (SSRI and the newer stuff) should work.    Thanks for the answer, but do you think that a change will lessen the SP more than the weaned off seroxat

Hard to say, really. They all fight SP to some extent but their effectiveness is highly dependent on the individual. Effexor works quite nicely for me and simply fantastic when it comes to my depression.

Response:

"FJ" <F@J

wrote in message

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    I have a feeling that seroxat (after having worked a year) not is as effective anymore. Is it possible that change to another med would work!

FJ. If you’re on 20 Mg, a raise to 40 Mg should do the trick I’ve been on Seroxat (Paxil) for 5-6 years. Sylvain.

Response:

    I have a feeling that seroxat (after having worked a year) not is as effective anymore. Is it possible that change to another med would work!

Response:

FJ wrote:

    I have a feeling that seroxat (after having worked a year) not is as effective anymore. Is it possible that change to another med would work!

Pretty much all modern anti depressants (SSRI and the newer stuff) should work.

Response:

Question:

I am on day 5 of trying 15mg a day to see if that helps, but I’m experience some anxiety already along with a fuzzy feeling in my head.

Try reducing your dosage at just 2 1/2 mg at a time, and do that for at least a couple weeks before reducing it some more.  It can take a while. You have time to mess with it, so you can go as slowly as you like. I’ve successfully reduced my Paxil to only 5 mg a day, plus .5 Ativan morning and evening.  But I’m still sleepy.  : ) Dot

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Ken, I’ve been on Celexa for several years, and it is my "miracle drug". YMMV depending on your chemical reaction to any medication…. Good luck!!!

I’ve been on Celexa for 1year 3months. It took about 8 weeks to start working and I developed a lot of side effects; prickly skin, itching rash, funny taste, teeth grinding, yawning, diarrhea, gas, restless night legs, purple blotches, insomnia and some sexual side effects.  My friend switched from Zoloft to Celexa and she said that the Zoloft side effects were worse than Celexa. So I’m wondering if I have had an atypical reaction.  I only ocassionally experience a side effect now (thankfully) but my dosage was increased from 20mg to 40mg about two months after I started because I didn’t feel it working.

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- Hide quoted text — Show quoted text – May I ask what was the horrible experience you had with Celexa? I’m taking it also and am trying to confirm some things. Hi All.. I have been taking Paxil 20mg a day for the past 6 months for Panic and Anxiety.  It has worked WONDERFUL!! I haven’t had a panic attack since around day 14 of starting paxil, after having a horrible experience with celexa. In the past month however, I am so tired I cannot seem to do anything at all.  I don’t remember being THIS tired when I started paxil, or in the previous 4 months. I am on day 5 of trying 15mg a day to see if that helps, but I’m experience some anxiety already along with a fuzzy feeling in my head. Should I go back up to 20mg and deal with the tiredness?  Any one have any ideas on how to combat the fatique?  Thanks!

sure Ken… Celexa doubled if not tripled my anxiety in the 2 months of use.. my panic attacks tripled and were incredibly more intense.. i could not sleep.. and had restless leg syndrome.. i was always nauseaus.. and sometimes i had so much energy i didn’t know what to do with myself.. that could have been due to the anxiety though.. it basicially did to me the exact opposite of what it was supposed to do.. hope that helps!

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Hi All.. I have been taking Paxil 20mg a day for the past 6 months for Panic and Anxiety.  It has worked WONDERFUL!! I haven’t had a panic attack since around day 14 of starting paxil, after having a horrible experience with celexa. In the past month however, I am so tired I cannot seem to do anything at all.  I don’t remember being THIS tired when I started paxil, or in the previous 4 months.

I’m almost a week into weaning off Paxil CR, and going on to Lexapro. My PDoc called me a ‘textbook case of Paxil side effects’ – sleepiness, intense tiredness all the time, major concentration problems  were the biggies.  Actually at one time or another, I think I had every side effect except the sexual problems. I am on day 5 of trying 15mg a day to see if that helps, but I’m experience some anxiety already along with a fuzzy feeling in my head.

Are you working with a doctor on this?  What is his/her advice?  Can you start on another AD or a benzo while you wean off? Should I go back up to 20mg and deal with the tiredness?  Any one have any ideas on how to combat the fatique?  Thanks!

The best way I found to cope with the sleepiness and tiredness was to get *lots* of sleep.  If I didn’t get at least 9 hours, I was hopeless at work.  With that, and massive amounts of caffeine I survived.  I am so relieved to be getting off that stuff. Gypsy’s Wife, Partner, Lover, and Life Companion

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May I ask what was the horrible experience you had with Celexa? I’m taking it also and am trying to confirm some things.

– Hide quoted text — Show quoted text – Hi All.. I have been taking Paxil 20mg a day for the past 6 months for Panic and Anxiety.  It has worked WONDERFUL!! I haven’t had a panic attack since around day 14 of starting paxil, after having a horrible experience with celexa. In the past month however, I am so tired I cannot seem to do anything at all.  I don’t remember being THIS tired when I started paxil, or in the previous 4 months. I am on day 5 of trying 15mg a day to see if that helps, but I’m experience some anxiety already along with a fuzzy feeling in my head. Should I go back up to 20mg and deal with the tiredness?  Any one have any ideas on how to combat the fatique?  Thanks!

Response:

Hi All.. I have been taking Paxil 20mg a day for the past 6 months for Panic and Anxiety.  It has worked WONDERFUL!! I haven’t had a panic attack since around day 14 of starting paxil, after having a horrible experience with celexa. In the past month however, I am so tired I cannot seem to do anything at all.  I don’t remember being THIS tired when I started paxil, or in the previous 4 months. I am on day 5 of trying 15mg a day to see if that helps, but I’m experience some anxiety already along with a fuzzy feeling in my head. Should I go back up to 20mg and deal with the tiredness?  Any one have any ideas on how to combat the fatique?  Thanks!

Response:

Question:

Is it possible to minimze the chances for a need to switch meds? What I am wonde

snip yes 2. So if a med doesn’t work for you, how do you know if you should increase after a period of 6-8 weeks if the med shows little benefit after you come close to or arrive at the average target dose, you move on LM

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– Hide quoted text — Show quoted text – Greetings all, Two dum question: 1) Is it possible to minimze the chances for a need to switch meds? What I am wondering here is, can a good pdoc, after talking to you sufficiently long to know your problems, make a good educated suggestion which SSRI is best for you? In other words, are the choices between paxil, zoloft, effexor, etc. completely based on trial and error, or are there guidelines that a good pdoc can use to decide which one is most likely to be the best for you? I’ve noticed that some doctors recommend paxil, some zoloft and others effexor; all for the same person with same sysmptoms. Is it because some know which is best chance of working for you, or is it just a matter of choice? 2) So if a med doesn’t work for you, how do you know if you should increase the dosage or if you should switch to a new med?? Thanks.

Is it not true that the SRIs and SSRIs have been proven no more effective than TCAs? I believe this is the case. If so, wouldn’t it make more sense to start with a TCA since their side-effect and long term effect profiles are much better understood than those of the SRIs and SSRIs?    http://www.newsfeed.com       The #1 Newsgroup Service in the World! —–= Over 100,000 Newsgroups – Unlimited Fast Downloads – 19 Servers =—–

Response:

Greetings all, Two dum question: 1) Is it possible to minimze the chances for a need to switch meds? What I am wondering here is, can a good pdoc, after talking to you sufficiently long to know your problems, make a good educated suggestion which SSRI is best for you? In other words, are the choices between paxil, zoloft, effexor, etc. completely based on trial and error, or are there guidelines that a good pdoc can use to decide which one is most likely to be the best for you?

Well, I disagree with most of the posters.  Individual reactions are just about impossible to predict.  A good pdoc will start you on the one most recommended for your symptoms, taking into consideration physical problems that some drugs can aggravate (blood pressure for Effexor, liver damage for Serzone).  He will then monitor the alleviation of symptoms vs. tolerability of side effects. In other words, the answer is a VERY qualified yes. I’ve noticed that some doctors recommend paxil, some zoloft and others effexor; all for the same person with same sysmptoms. Is it because some know which is best chance of working for you, or is it just a matter of choice? 2) So if a med doesn’t work for you, how do you know if you should increase the dosage or if you should switch to a new med??

Again your doctor should be able to help with this.  Largely the decision depends on side effects, i.e. if your side effects are difficult to tolerate, raising the dosage is not likely to provide a long-term solution! — Mason Barge "People who like this sort of thing will find this the sort of thing they like."         — Abraham Lincoln

Response:

Are you saying that Effexor is more effective for depression than zoloft or paxil,

effexor mimics tricyclic medications in its actions but uses a different mechanism to acheive it that initially was purported to have fewer side effects-it just has different ones-it is useful when more selective meds like ssri’s fail to work -using it instead of a tca has some advantages in certain medical and psychological profiles-neither are better-both have specific characteristics that may hold better therapeutic value to different people. all are effective for depression, all theoretically are equally effective for anxiety-but theory and practice may be at odds Which one in your judgement has the least side effects?

currently they all have similar side effect profiles that can be remediated by using very low doses to start and being patient enough to increase them painfully slowly. Each person has their own level of  toleration of the side effects of any of them. Some meds have greater potency at the synapse and each has its own slightly different molecular stimulating characteristics  so for one person zoloft may be sedating and for another it may be stimulating-we use general characteristics to anticipate the results of each med. If benzos are used along with the ad med-one is more comfortable. LM

Response:

Hi Chip, Are you saying that Effexor is more effective for depression than zoloft or paxil, but they are all equallty effective for anxiety? Which one in your judgement has the least side effects? Cheers Rsina – Hide quoted text — Show quoted text – I believe so. I would select one with the least side effects since they (SSRIs) are all equally effective (as a group, although one might prove to be more effective for one person in particular). Or, if a person has used one SSRI in the past with good results, I would probably select that one. If he/she was depressed in addition to anxiety, I would use Effexor since that tends to be more effective for depression and equally effective for anxiety as the SSRIs.

Response:

Hi Chip, Are you saying that Effexor is more effective for depression than zoloft or paxil, but they are all equallty effective for anxiety?

Yes. Which one in your judgement has the least side effects?

That’s a tough one. Celexa is promoted as having fewer side effects, and some people on ASAP have said that has been their experience. Zoloft seems to be well tolerated. Paxil seems to make people fatigued and sleepy during the day. Prozac is too stimulating and this results in increased anxiety and insomnia. Plus Prozac has such a long half life if you needed to discontinue it because of an adverse reaction it would be around in your system for a few weeks. Plus Prozac tends to interfer with the metabolism of other meds more than the other SSRIs. Luvox seems to be very sedating. I’d be inclined to put patients on Celexa or Zoloft instead of the other SSRIs. Although I’m certain many people are on any of these SSRIs and are experiencing good results. Cheers Rsina

Chip – Hide quoted text — Show quoted text – I believe so. I would select one with the least side effects since they (SSRIs) are all equally effective (as a group, although one might prove to be more effective for one person in particular). Or, if a person has used one SSRI in the past with good results, I would probably select that one. If he/she was depressed in addition to anxiety, I would use Effexor since that tends to be more effective for depression and equally effective for anxiety as the SSRIs.

Response:

Greetings all, Two dum question: 1) Is it possible to minimze the chances for a need to switch meds? What I am wondering here is, can a good pdoc, after talking to you sufficiently long to know your problems, make a good educated suggestion which SSRI is best for you? In other words, are the choices between paxil, zoloft, effexor, etc. completely based on trial and error, or are there guidelines that a good pdoc can use to decide which one is most likely to be the best for you? I’ve noticed that some doctors recommend paxil, some zoloft and others effexor; all for the same person with same sysmptoms. Is it because some know which is best chance of working for you, or is it just a matter of choice? 2) So if a med doesn’t work for you, how do you know if you should increase the dosage or if you should switch to a new med?? Thanks.

Response:

Greetings all, Two dum question: 1) Is it possible to minimze the chances for a need to switch meds?

Yes. What I am wondering here is, can a good pdoc, after talking to you sufficiently long to know your problems, make a good educated suggestion which SSRI is best for you?

I believe so. I would select one with the least side effects since they (SSRIs) are all equally effective (as a group, although one might prove to be more effective for one person in particular). Or, if a person has used one SSRI in the past with good results, I would probably select that one. If he/she was depressed in addition to anxiety, I would use Effexor since that tends to be more effective for depression and equally effective for anxiety as the SSRIs. In other words, are the choices between paxil, zoloft, effexor, etc. completely based on trial and error, or are there guidelines that a good pdoc can use to decide which one is most likely to be the best for you? I’ve noticed that some doctors recommend paxil, some zoloft and others effexor; all for the same person with same sysmptoms. Is it because some know which is best chance of working for you, or is it just a matter of choice?

All for the same person? Or all for different persons with the same symptoms? Docs tend to prescribe meds they have prescribed before and are comfortable with. 2) So if a med doesn’t work for you, how do you know if you should increase the dosage or if you should switch to a new med??

If I got *any* response to the med, I would tend to increase the dose. If after several increases there is no response, I’d try a different med. Chip – Hide quoted text — Show quoted text – Thanks.

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Question:

Lamictal

Response:

Worn_Out,  you seem to be feeling a little better, are you?  hopefully  

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I am doing better.  My wife says I am talking more & I have started kidding with my 24 year old daughter, again.  I think the tofranil is helping & I am on my third week on testosterone injections. I have decided that bi-polar disorder is forever.  I woke up this morning in very bad shape, but have gotten over it.  Somehow we must all manage to survive because the bad times come and go and if things are bad now, they WILL get better. Thanks Worn_Out,  you seem to be feeling a little better, are you? hopefully

Before you buy.

Response:

What % of manic depressives commit suicide?

I have heard that one in five commit suicide, but I wouldn’t swear by it. I hope you find a treatment that works for you. The future brings us the hope of new drugs and new treatments. Web Page at: www.robertpo.com For email replies remove the ****

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What % of manic depressives commit suicide? I have heard that one in five commit suicide, but I wouldn’t swear by it. I hope you find a treatment that works for you. The future brings us the hope of new drugs and new treatments. Web Page at: www.robertpo.com For email replies remove the ****

I’ve seen studies that showed that 1 in 5 bipolars who refused treatment committed suicide. But…these were bipolars sick enough that they had been hospitalized, that’s where they were found for the study. Also, it stands to reason that those who refuse treatment are sicker with more personality problems than average. Also, these were people who were hospitalized in public hospitals, which again indicates that they were sicker…someone in a private hospital probably has been able to work until recently, and hasn’t alienated or shoved away family and friends yet. Still, taking your meds and working with your doctor is the best way to keep from getting worse…and worse can be very, very bad.

Response:

Paxil worked for me. Not to high though-Reached an even – level of comfort. It sounds like you have to find a MD (preferably, a psychopharmacologist) who knows how to mix different combinations of drugs. Don’t lose hope, though.  If you do you start asking questions about suicide, and you might have to live it all again in the next life.  At this point, paying for drugs is a bigger problem for the long haul than taking them.  Any advice? – Hide quoted text — Show quoted text – After 13 years with BiPolar Disorder I have yet to find effective treatment for its depression. What is the most effective treatment for BiPolar Depression? What % of manic depressives commit suicide? Before you buy.

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At this point, paying for drugs is a bigger problem for the long haul than taking them.  Any advice?

I have been started on Tofranil/Imipramine and my pharmacy dispensed it in its generic form.  Instead of paying a copay of $7.00 for the name brand I pay $2.00 for the generic.  The book, "The Essential Guide to Psychiatric Drugs", shows that the name brand would be $.62/pill and the generic would be $.05/pill (the book was published in 1990). If this is still true, a great deal can be saved by buying generic, if possible. The book, "The Essential Guide to Psychiatric Drugs", by Jack M. Gorman, MD. is the best help in this area that I have found.  If you can find a recent edition, I highly reccomend it. Good luck! Before you buy.

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Drop trou Nihil  You know you get a spanking for saying bad stuff like that. Bend over,  ten whacks with the leather strap. 1   *[SMACK]*      ( oouch) 2   *[WACK]*         (stop) 3   *[CRACK]*        ( I take it back,  please stop) Let those warm yer buns a while,  I’ll fix you a few fresh ones in a bit. – Hide quoted text — Show quoted text – x-no-archive: yes After 13 years with BiPolar Disorder I have yet to find effective treatment for its depression. What is the most effective treatment for BiPolar Depression? Personally, I think that Doctor Kevorkian, whom I consider to be a Saint, has the best treatment.

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Everyone is different.  Tell me what you’ve tried, kay?  Also, let me know what your additional symptoms are, etc.  Have you had partial relief with certain drugs? There may be treatments that are better for BPI and treatments that are better for BPII.  A lot of people take different drug cocktails, as I’m sure you know.  A friend of mine is on lithium AND neurontin, among other things. I’ve been on lots of diff. stuff simultaneously: buspar, trazodone, klonopin, prozac, lithium, depakote, and neurontin are the bulk of the things I’ve been on.  Are you taking an antidepressant and a mood stabilizer? -bpkittycat – Hide quoted text — Show quoted text – After 13 years with BiPolar Disorder I have yet to find effective treatment for its depression. What is the most effective treatment for BiPolar Depression? What % of manic depressives commit suicide? Before you buy.

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I am now on Tofranil and Lithobid. I have had about 35 ECT treatments (unilateral and bilateral). I have been on: Xanax Elavil Dexedrine Anafranil Welbutrin Buspar Tegretol Librium Valium Effexor Prozac Tofranil Librium Eskalith Ritalin Nardil Serzone Pamelor Parnate Paxil Prozac Risperdal Zoloft Xanax Thyroid Hormone Testosterone I appreciate your interest. – Hide quoted text — Show quoted text – Everyone is different.  Tell me what you’ve tried, kay?  Also, let me know what your additional symptoms are, etc.  Have you had partial relief with certain drugs? There may be treatments that are better for BPI and treatments that are better for BPII.  A lot of people take different drug cocktails, as I’m sure you know.  A friend of mine is on lithium AND neurontin, among other things. I’ve been on lots of diff. stuff simultaneously: buspar, trazodone, klonopin, prozac, lithium, depakote, and neurontin are the bulk of the things I’ve been on.  Are you taking an antidepressant and a mood stabilizer? -bpkittycat

Before you buy.

Response:

Worn Out- I can see why you are frustrated I’ve forgotten what Tofranil is for.  Antipsychotic?  Antidepressant?  MAOI or Tricyclic? What symptoms do you have the most trouble with?  I seem to be depressed a lot, and have had depression for most of my life, and "only" a few major manic episodes.  I suffer from migraines as well, and hope that the neurontin that I’ve just started will help in preventing the attacks (mania and migraine). I am wondering what you have tried and what you know about diet and how it affects mood.  I would suggest, if you are not already doing so, to severely cut down on all carbohydrates, have lots of protein, and consume 3T of flax seed oil every day.  Always use olive oil when you can, too (like in salad dressings, for dipping bread in, etc.). These new drugs for seizures are supposed to work for many treatment-resistant patients.  check out the Neurontin facts posted earlier today if you haven’t already. Good luck, and I hope you get some good advice and new ideas from others… -bpkittycat – Hide quoted text — Show quoted text – I am now on Tofranil and Lithobid. I have had about 35 ECT treatments (unilateral and bilateral). I have been on: Xanax Elavil Dexedrine Anafranil Welbutrin Buspar Tegretol Librium Valium Effexor Prozac Tofranil Librium Eskalith Ritalin Nardil Serzone Pamelor Parnate Paxil Prozac Risperdal Zoloft Xanax Thyroid Hormone Testosterone I appreciate your interest. Everyone is different.  Tell me what you’ve tried, kay?  Also, let me know what your additional symptoms are, etc.  Have you had partial relief with certain drugs? There may be treatments that are better for BPI and treatments that are better for BPII.  A lot of people take different drug cocktails, as I’m sure you know.  A friend of mine is on lithium AND neurontin, among other things. I’ve been on lots of diff. stuff simultaneously: buspar, trazodone, klonopin, prozac, lithium, depakote, and neurontin are the bulk of the things I’ve been on.  Are you taking an antidepressant and a mood stabilizer? -bpkittycat Before you buy.

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After 13 years with BiPolar Disorder I have yet to find effective treatment for its depression. What is the most effective treatment for BiPolar Depression? What % of manic depressives commit suicide? Before you buy.

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re: question #1: that’s the question, all right re: question #2: between 15 & 20% (some confusion, apparently, about whether this means *all* people with bipolar or just the untreated ones). What about the undiagnosed ones, then? I interpolate all this to indicate that the figure refers to all bipolars. — Deep – Hide quoted text — Show quoted text – After 13 years with BiPolar Disorder I have yet to find effective treatment for its depression. What is the most effective treatment for BiPolar Depression? What % of manic depressives commit suicide? Before you buy.

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: After 13 years with BiPolar Disorder I have yet to find effective : treatment for its depression. : : What is the most effective treatment for BiPolar Depression?    There is no most effective treatment, it varies with the    circumstances and individual.  Passage of time usually    brings with it some relief of symptoms. : : What % of manic depressives commit suicide?   It is higher for untreated sufferers……15-20% if I recall   correctly.   nm : : : Before you buy. :

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Question:

Hey, I took 10mg of Valium last night and got a normal night’s sleep!  At least I think I did.  Slept all the way through, no psycho dreams, no problems whatsoever, just a tiny bit of grogginess this morning.  I’m hoping that using a little pharmy assist just for sleep for the next 3 or 4 days will see me all the way through the rest of Effexor withdrawal. I’m hoping that I am *not* just putting it off, but my doc tells me I have no reason to worry about that.  Otherwise, some dizziness once up and about, but that is nothing compared to the wild nights of yesteryear.  I may be OK now.  Whew.

Good, now stop being such a bitch around here and get the stupid block off your email. I’ve missed you. Mary Beth "Real friends let friends drive naked."

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Hey, I took 10mg of Valium last night and got a normal night’s sleep!  At least I think I did.  Slept all the way through, no psycho dreams, no problems whatsoever, just a tiny bit of grogginess this morning.  I’m hoping that using a little pharmy assist just for sleep for the next 3 or 4 days will see me all the way through the rest of Effexor withdrawal. I’m hoping that I am *not* just putting it off, but my doc tells me I have no reason to worry about that.  Otherwise, some dizziness once up and about, but that is nothing compared to the wild nights of yesteryear.  I may be OK now.  Whew.

Mark, Glad to hear that you found something to help you get through this. Hopefully, you’ve been through the worst of it. chuck

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Hey, I took 10mg of Valium last night and got a normal night’s sleep!  At least I think I did.  Slept all the way through, no psycho dreams, no problems whatsoever, just a tiny bit of grogginess this morning.

Glad to hear that, Mark.  I hope you don’t have to stay on the Valium for more than a few days also.   I think I remember you (?) saying something about trying to drink lots of water to help clear out your system.  I was also wondering if getting out for walks and fresh air helps get the Effexor out of one’s system more quickly. (I really don’t know, but it seems like it might.) Btw, I have to tell you about a dream I had about you (nothing like your nightmares, thankfully), but it was kind of funny, and I think you’ll appreciate the humor in it.   Dream:  I was typing a response to one of your posts, BUT the catch was that I was totally blind (or blindfolded?) and had to spend hours replacing my hands on the "base keys" to keep my place.  Then, I would forget whether I had backspaced to correct errors (and I remembered thinking…geez this can’t have typos in it!) and, I could never re-read anything I typed.  I’m generally a good typist so this was a very frustrating dream.   It seemed like it did go on for hours.  hehehe…  I guess my posts do sometimes too. I was going to tell you about this the next day, but that was the same day that you posted a goodbye to asd message.  Weird.   Take it easy, Mark.  Hopefully you’ll keep posting (and I’ll try not to be too blind in any of my responses) <g Leah

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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

Response:

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.

Response:

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

Response:

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

Response:

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.

Response:

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

Response:

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

Response:

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 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

Response:

(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

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(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

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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

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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

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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

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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

Response:

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

Response:

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

Response:

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

Response:

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

Response:

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

Response:

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