Question:

Kathleen, I wonder if you’ve cleaned (or had someone clean) your house thoroughly? After spending 5 days in the hospital earlier this month, I had my couch and carpets steam cleaned and paid a cleaning service to come in a clean REALLY good.  Also, I purchased a HEPA air filtering machine and pillow and mattress covers that are made specifically with asthmatics and allergy sufferers in mind.  Look around your house – do you have a lot of stuffed animals or things that collect and retain dust?  If so, move ‘em out.  That should help a lot. I’m trying to get in the habit of putting my bedding in the dryer for at least 20 minutes once a week.  Supposedly, that gets rid of any dust mites that might be lurking. My point is have a good look at your environment.  It can make a huge difference. Good luck – Laura

Response:

Dear Kathleen, Would you believe that many women find that their asthma actually becomes WORSE during pregnancy (or that they develop it for the first time)? I have not tried the non-drowsy antihistimines, but I know people who swear by them, and also people who have had trouble with irregular heart beat because of them. Vitamin C is purported to have antihistimine properties, I have tried this and it works well for me — 500 to 1000 mg during my mild season, 5000 to 8000 mg during my worst times. I am stunningly sensitive to medications, and I can take this amount without difficulty. Take the powder and mix it with water so that you are sipping it all day I take the buffered kind. To determine the amount that is right for you, just keep taking it until your bowels loosen, and back off from there. I have also read that pregnancy is a factor in candida overgrowth, which may aggravate your asthma / allergy symptoms. I tried an anti-candida diet for the first time this spring, and am having my most trouble free allergy season in a long time! You might want to investigate to see if the symptoms of candida overgrowth match yours. Candida Directory: The Comprehensive Guide to Yeast Free Living, by Helen Gustafson ASthma: Breathe Again Naturally and Reclaim Your Life, by Mimi Weisbord The Yeast Connection, by William G. Crook MD Good luck! Patti – Hide quoted text — Show quoted text -I was diagnosed with asthma a few years ago.  Last spring & summer season went quite smoothly for me and I assumed credit should be given to the allergy shots and inhaler treatments.  I am now beginning to wonder if that assumption was right.  I was pregnant last spring & summer and my doctor had told me that you tend to have more resistance to things during pregnancy. It is now spring and I can’t breathe!  I am taking Serevent inhaler 2puffs 2x daily, Flovent inhaler 2puffs 2x daily, Ventolin inhaler as needed (which is daily at least 3x), Nasacort nasal inhaler 2puffs each side daily, Uniphyl 400mg 2x daily, Intex Pse 2x daily and have been on Medral dose packs several times. It seems as though I walk outside and I’m immediately seized up.  I do not want to spend my life indoors. I now believe the season was better for me due the increased resistancy while I was pregnant.  I don’t plan on having anymore children and really want to breathe someday soon.   Please help!! Any suggestions you may have would be helpful.  Thank you

Response:

You might ask your doctor for allergy testing.  If you are allergic to some of the springtime pollens then they may be causing your current problems. _If_ the problem is caused by allergy you may be able to reduce your medications by trying one of the new non-sedating antihistimines. – Hide quoted text — Show quoted text – I was diagnosed with asthma a few years ago.  Last spring & summer season went quite smoothly for me and I assumed credit should be given to the allergy shots and inhaler treatments.  I am now beginning to wonder if that assumption was right.  I was pregnant last spring & summer and my doctor had told me that you tend to have more resistance to things during pregnancy. It is now spring and I can’t breathe!  I am taking Serevent inhaler 2puffs 2x daily, Flovent inhaler 2puffs 2x daily, Ventolin inhaler as needed (which is daily at least 3x), Nasacort nasal inhaler 2puffs each side daily, Uniphyl 400mg 2x daily, Intex Pse 2x daily and have been on Medral dose packs several times. It seems as though I walk outside and I’m immediately seized up.  I do not want to spend my life indoors. I now believe the season was better for me due the increased resistancy while I was pregnant.  I don’t plan on having anymore children and really want to breathe someday soon.   Please help!! Any suggestions you may have would be helpful.  Thank you

Response:

I was diagnosed with asthma a few years ago.  Last spring & summer season went quite smoothly for me and I assumed credit should be given to the allergy shots and inhaler treatments.  I am now beginning to wonder if that assumption was right.  I was pregnant last spring & summer and my doctor had told me that you tend to have more resistance to things during pregnancy. It is now spring and I can’t breathe!  I am taking Serevent inhaler 2puffs 2x daily, Flovent inhaler 2puffs 2x daily, Ventolin inhaler as needed (which is daily at least 3x), Nasacort nasal inhaler 2puffs each side daily, Uniphyl 400mg 2x daily, Intex Pse 2x daily and have been on Medral dose packs several times. It seems as though I walk outside and I’m immediately seized up.  I do not want to spend my life indoors. I now believe the season was better for me due the increased resistancy while I was pregnant.  I don’t plan on having anymore children and really want to breathe someday soon.   Please help!! Any suggestions you may have would be helpful.  Thank you

Response:

- Hide quoted text — Show quoted text – I was diagnosed with asthma a few years ago.  Last spring & summer season went quite smoothly for me and I assumed credit should be given to the allergy shots and inhaler treatments.  I am now beginning to wonder if that assumption was right.  I was pregnant last spring & summer and my doctor had told me that you tend to have more resistance to things during pregnancy. It is now spring and I can’t breathe!  I am taking Serevent inhaler 2puffs 2x daily, Flovent inhaler 2puffs 2x daily, Ventolin inhaler as needed (which is daily at least 3x), Nasacort nasal inhaler 2puffs each side daily, Uniphyl 400mg 2x daily, Intex Pse 2x daily and have been on Medral dose packs several times. It seems as though I walk outside and I’m immediately seized up.  I do not want to spend my life indoors. I now believe the season was better for me due the increased resistancy while I was pregnant.  I don’t plan on having anymore children and really want to breathe someday soon.   Please help!! Any suggestions you may have would be helpful.  Thank you

Which Flovent inhaler are you using? Flovent 44, Flovent 110, or Flovent 220 These are for Low, Medium, and High dose applications. Sounds like you need more inhaled steroids, so may need to increase the dose. Have you had your allergies tested. Sounds like you might be allergic to grass pollen, or other plants in your vicinity. I recognize all your drugs except the Intex Pse? You are taking quite a few. One drug that might be worth trying is the new anti-leukotriene Singulair, a pill you take once/day. Somtimes immunotherapy (allergy shots) can be useful for those who are very allergic. Be sure to breathe thru your nose at all times, to filter the air going to the lungs. If you have any problems with sinusitis or GERD, they should be treated. Ellis

Response:

Question:

– Hide quoted text — Show quoted text – x-no-archive:yes x-no-archive:yes The crappiest part of working a real late-night shift is seeing the sun come up in the morning while you’re still there. Ugh. There’s just something about that that feels wrong, no matter what. Sure, before I started this shift I would see the sunrise from home, but it’s different in some way when you’re sitting at a desk and look up to see the horizon turning that pale pinkish-grey colour. There’s something spiritually uncomfortable about it. It is worth it, though. My team started working in the new building last night, and we got our pick of desks. I have a nice, roomy cubicle and sit by my hubby, right across from another woman I’ve become very good friends with. I’ve never had my own cubicle before. It makes me feel so employed! It’s *my* cubicle that I don’t have to timeshare with anyone else. Now I can brighten it up with pictures of my kitties. oooh. i’m jealous. i want a cubicle. It’s fun. Except my computer is white. At the other building we had sleek, sexy black computers, and now we have generic looking whitish ones. Ah, well. Black would have clashed with the baby-poo yellow of the walls, I suppose.

Gosh! It never crossed my mind to think how the color of my computer in my office goes with the color of the walls. Is it because I am a boy??? One month, three days, 8 hours, 22 minutes and 2 seconds. 858 cigarettes not smoked, saving $133.10. Life saved: 2 days, 23 hours, 30 minutes. — Teilhard The Extraterrestrial

Response:

– Hide quoted text — Show quoted text – x-no-archive:yes The crappiest part of working a real late-night shift is seeing the sun come up in the morning while you’re still there. Ugh. There’s just something about that that feels wrong, no matter what. Sure, before I started this shift I would see the sunrise from home, but it’s different in some way when you’re sitting at a desk and look up to see the horizon turning that pale pinkish-grey colour. There’s something spiritually uncomfortable about it. It is worth it, though. My team started working in the new building last night, and we got our pick of desks. I have a nice, roomy cubicle and sit by my hubby, right across from another woman I’ve become very good friends with. I’ve never had my own cubicle before. It makes me feel so employed! It’s *my* cubicle that I don’t have to timeshare with anyone else. Now I can brighten it up with pictures of my kitties.

Hey, I have a cubicle too. But it is so small, that it would be too personal to have a visitor in there, LOL. One month, three days, 8 hours, 14 minutes and 56 seconds. 858 cigarettes not smoked, saving $133.08. Life saved: 2 days, 23 hours, 30 minutes. — Teilhard The Extraterrestrial

Response:

Question:

Howdy. I have a question.  I know from experience that exposure to a cat triggers a severe attack in me within an hour. I have an inhaler for these times. I am in the market for a home.  Should I even bother looking at the houses where cats are living?  I read on a couple web sites that within a few months, the allergen levels can be reduced to a non-harmful level.  Does anyone have experience with this?  I wonder what would have to be done – rip out all carpet, professional duct cleaning, etc.  Any help is appreciated – I’m missing out on some nice houses and want to know if I am being unrealistic.

Have the walls repainted, wash the curtains, and have the carpets professionally steam cleaned using the products that denature allergens. PS I can’t take meds b/c we’re thinking about becoming parents (I’m a woman! =)

Discuss this with your doctor.  They see this all the time and the combination of asthma meds and pregnancy is ‘routine’ to them. There is no ‘Army of One’ in the word: ‘Team’

Response:

Howdy. I have a question.  I know from experience that exposure to a cat triggers a severe attack in me within an hour Have the walls repainted, wash the curtains, and have the carpets professionally steam cleaned using the products that denature allergens.

I have a problem with this! I have read numerous accounts in this newsgroup where they paid a ‘Professional Carpet Cleaner’ to clean their carpets and use a so called product to eliminate allergies. Most have not met with success through this avenue, mostly because your average Carpet Cleaner is not an asthmatic nor a rocket scientist ( to put it mildly!), nor does it require any kind of training, just  a warm body and maybe a hustle attitude. Consequently, the average ‘behind the scenes’ experience that people have is that a Carpet Cleaner Guy will tell them they’ll take care of the allergy problem, then goes out and gets the Closest Shelf Product which happens to be for Dust Mites and uses it, and it does nothing for the Cat Allergen problem. However, the proper product is a Tannic Acid Solution at 3% which needs to be hand sprayed on the carpet on hands and knees…..no Carpet Cleaner guy is going to do this! You need to do it yourself!!! I steam cleaned my carpets 3 times myself to no avail, until I sprayed the Tannic Acid Solution, then that did a Big Trick!!

Response:

hi, we have a cat, and I am asthmatic. I used to get quite wheezy and needed my inhaler a lot when we lived in our last house. recently, we moved to London and our new house has no carpets at all, just wooden floors and tiles. The walls are painted – no wallpaper. since moving here, my asthma has improved beyond recognition. Now I only need my salbutamol inhaler before excercise and very occassionally when I feel a bit wheezy. I don’t think I ever want carpets again! Dan.

Response:

I am also very allergic to cats, so I can’t have one in my house. I had a cat the entire time I was growing up, but after 20 yrs, I had enough exposure to keep me from being in any house with cats. My last cat was outdoors only. And even with that, I had to take a shower when I went back in so I didn’t have any dander, saliva, etc. around me. However, once I was away from cats for a few years and have been using Serevent and Flovent during that time, I am having better luck. I agree with the carpet thing. I visited my sister a couple of years ago in her new house. It has no carpeting except in the bedrooms, and the sofa and chairs are leather. I was actually able to visit with her for most of the day. At least until the night that I could no longer resist her cat and he snuggled in my lap. Luckily I was staying at a hotel, so I was able to recuperate overnight. I didn’t take any more chances–just a pet and a rub here and there. In the past in her other houses, I was not able to spend more than an hour or so inside. And even then I still had problems while I was inside. I know that no carpets and less upholstery certainly helps. I can’t rely on that for my house, tho. Nothing works sufficiently to let me have another kitty of my own. I’ll just have to adore from afar… -Carly – Hide quoted text — Show quoted text – hi, we have a cat, and I am asthmatic. I used to get quite wheezy and needed my inhaler a lot when we lived in our last house. recently, we moved to London and our new house has no carpets at all, just wooden floors and tiles. The walls are painted – no wallpaper. since moving here, my asthma has improved beyond recognition. Now I only need my salbutamol inhaler before excercise and very occassionally when I feel a bit wheezy. I don’t think I ever want carpets again! Dan.

Response:

My allergy to cats is exactly like yours. After an hour or so, I’m wheezing from which i can recover fairly easy if I get away and have a nights rest Give me 4-12hours or so of exposure  and I am a very sick puppy. It wouldnt matter if you bought a house that had cats as long as you get rid of the carpets and then perhaps painted the walls. As to the statement that the allergen only lasts 2-6 months or so…. Carpets!!! Other than that there is a way to treat the old carpets with a Tannic Acid Solution that you can make yourself that will denature the cat allergen……. if you want more info ….just ask. Its worked for me. Moreover, I wouldnt let the fact that there was cats there before dissuade my purchase unless tearing up the carpets was out of the question. I made the mistake of moving into a NO PETS apt. but failed to find out ahead of time that they had a longstanding PETS ALLOWED policy before I moved in. Consequently, my apt. was making me very sick each and every weekend….I finally sprayed the carpets and denatured them…. and it was a miracle cure!!! – Hide quoted text — Show quoted text – Howdy. I have a question.  I know from experience that exposure to a cat triggers a severe attack in me within an hour. I have an inhaler for these times. I am in the market for a home.  Should I even bother looking at the houses where cats are living?  I read on a couple web sites that within a few months, the allergen levels can be reduced to a non-harmful level.  Does anyone have experience with this?  I wonder what would have to be done – rip out all carpet, professional duct cleaning, etc.  Any help is appreciated – I’m missing out on some nice houses and want to know if I am being unrealistic. PS I can’t take meds b/c we’re thinking about becoming parents (I’m a woman! =)

Response:

Howdy. I have a question.  I know from experience that exposure to a cat triggers a severe attack in me within an hour. I have an inhaler for these times. I am in the market for a home.  Should I even bother looking at the houses where cats are living?  I read on a couple web sites that within a few months, the allergen levels can be reduced to a non-harmful level.  Does anyone have experience with this?  I wonder what would have to be done – rip out all carpet, professional duct cleaning, etc.  Any help is appreciated – I’m missing out on some nice houses and want to know if I am being unrealistic. PS I can’t take meds b/c we’re thinking about becoming parents (I’m a woman! =)

Response:

http://www.aircleaners.com here If I were very allergic to cats { Which I Am } I would stay away from all homes that had cats in them. Its not worth the hassle of trying to find and clean all of the contaminated areas. Cat allergen can be very miserable to live with. Signature To Chat With A LIVE Sales Person { NOW ! } Click On The Box To The Right Add the HumanClick "Click to Chat" button to your own e-mails for free at www.humanclick.com

– Hide quoted text — Show quoted text – Howdy. I have a question.  I know from experience that exposure to a cat triggers a severe attack in me within an hour. I have an inhaler for these times. I am in the market for a home.  Should I even bother looking at the houses where cats are living?  I read on a couple web sites that within a few months, the allergen levels can be reduced to a non-harmful level.  Does anyone have experience with this?  I wonder what would have to be done – rip out all carpet, professional duct cleaning, etc.  Any help is appreciated – I’m missing out on some nice houses and want to know if I am being unrealistic. PS I can’t take meds b/c we’re thinking about becoming parents (I’m a woman! =)

Response:

Question:

- Hide quoted text — Show quoted text – Dan wrote…… I take xanax before going to bed and get to slepp usually within 10 minutes, but I allways awaken about 1.5 to 2 hours later feeling anxious, and sweating terribly. My hands have gone to sleep due to poor circulation. What is the best med for sleep? PLEASE! Dear Dan, There is a good chance that you are undermedicated when it come to Xanax, the should discuss this with your doctor. How long have you been on Zoloft, what is your current dose and do you feel it has helped you any? How is your anxiety during the day? If Zoloft hasn`t helped you much and is causing you to sleep poorly…..perhaps instead of adding yet another med why not switch to another antidepressant? I have gone through stages where my hands are always falling alseep while I am sleeping I have a bad habit of tucking my arms under my head and that is whats makes them fall asleep. Take care Jackie "Our ultimate freedom is the right and power to decide how anybody or anything outside ourselves will affect us." -Stephen Covey

Jackie-I do the same thing you do with my hands under head for sleepling. I assumed it was just poor circulation that caused the numness, Today a doctor told me it is carpel tunnel that is causing them to go to sleep–or probably a pinched nerve.

Response:

I can get ambien here in FLorida a hell of a lot easier than I can get xanax around here.. Ambien, sonata… (guess cause they aren’t in high demand on the street…)

There’s no problem with the availability of Ambien elsewhere, either. It’s zopiclone that can’t generally be obtained in the US, though it is available in Europe. I personally found zopiclone more effective than Ambien, though Ambien is quite good. -David-

Response:

What is the best med for sleep? PLEASE! Ambien (zolpidem) is pretty good, I found. It’s more or less unique. There is also zopiclone, if you can get a script for it (it’s not generally available in the US).

I can get ambien here in FLorida a hell of a lot easier than I can get xanax around here.. Ambien, sonata… (guess cause they aren’t in high demand on the street…) Or you could try a sedating antidepressant like amitriptyline, doxepin, or mirtazapine (Remeron). But these work in a different way for sleeplessness, and may not work for everyone. -David-

when I added remeron to my xanax and zoloft (4mg and 100mg respectively daily) I have had a much easier time sleeping… YMMV. Much Love, Brooke

Response:

I take xanax before going to bed and get to slepp usually within 10 minutes, but I allways awaken about 1.5 to 2 hours later feeling anxious, and sweating terribly. My hands have gone to sleep due to poor circulation. What is the best med for sleep? PLEASE!

Response:

What is the best med for sleep? PLEASE!

Ambien (zolpidem) is pretty good, I found. It’s more or less unique. There is also zopiclone, if you can get a script for it (it’s not generally available in the US). Or you could try a sedating antidepressant like amitriptyline, doxepin, or mirtazapine (Remeron). But these work in a different way for sleeplessness, and may not work for everyone. -David-

Response:

Dan wrote…… I take xanax before going to bed and get to slepp usually within 10 minutes, but I allways awaken about 1.5 to 2 hours later feeling anxious, and sweating terribly. My hands have gone to sleep due to poor circulation. What is the best med for sleep? PLEASE!

Dear Dan, There is a good chance that you are undermedicated when it come to Xanax, the should discuss this with your doctor. How long have you been on Zoloft, what is your current dose and do you feel it has helped you any? How is your anxiety during the day? If Zoloft hasn`t helped you much and is causing you to sleep poorly…..perhaps instead of adding yet another med why not switch to another antidepressant? I have gone through stages where my hands are always falling alseep while I am sleeping I have a bad habit of tucking my arms under my head and that is whats makes them fall asleep. Take care Jackie "Our ultimate freedom is the right and power to decide how anybody or anything outside ourselves will affect us." -Stephen Covey

Response:

Question:

On Sun, 13 Jan 2002 00:56:49 GMT, Glenn <g…@mindspring.com

wrote: It was HORRIBLE for me. It kept me awake and made me feel as though I had taken an entire box of Sudafed before bed.

The usual complaint about Effexor is that it goes down… it comes back up. It’s something like 40% that report at least some nausea. On the other hand, my internist prescribes me Biaxin (an antibiotic), even though it makes her throw up. I’ve never had any trouble with that… when she asked me about antibiotics I’d taken, I mentioned "no problems whatsoever with Biaxin" and she made a face like she had been sucking on a lemon.

The worst med ever for me.

Prozac probably gets that award for me (overstimulation), with an honorable mention for penicillin (GI upset, but of the "flow-through" kind).

Response:

Charles L. Perrin wrote in message

Prozac probably gets that award for me (overstimulation), with an honorable mention for penicillin (GI upset, but of the "flow-through" kind).

i call that a tetley tea bag meds……… unique flow thru system

Response:

I just gave up on Effexor XR as it kept me awake. I am taking Remeron and now I cant wake up!!! "Cathy12253" <cathy12…@aol.com

wrote in message

news:20020109180552.13137.00000577@mb-cs.aol.com… – Hide quoted text — Show quoted text -

I am on effexor xr also (75 mg 2 times per day).  I was taking 2nd dose at bedtime and came to the conclusion that it was not helping my insomnia.  I

just

started taking the 2nd dose, today, at 1pm to see if that helps.   I also

read

an article that said effexor xr was an "activator" anti-depressant so that

it

could antagonize your insomnia.Anybody on or been on effexor XL. Is it

any

good and when is the best time to take it? I take 75mg morning and night. So far I think its keeping me awake

Response:

On Sun, 13 Jan 2002 18:21:02 -0000, "sgreen1234" <sgreen1…@yahoo.co.uk

wrote: I just gave up on Effexor XR as it kept me awake. I am taking Remeron and now I cant wake up!!!

Keep working with your doctor… there are a significant number of antidepressants, and they vary as to whether they’re stimulating or sedating. I’m no doctor, but I"ve been doctored… and I’d make a wild-eyed guess that what they call Lustral in the UK (sertraline generically/Zoloft in the USA) might be the happy medium. But, then again, it might NOT. It’s all rather unpredictable (with the exception that Remeron patients do sleep).

Response:

"sgreen1234" <sgreen1…@ntlworld.com

wrote: Anybody on or been on effexor XL. Is it any good and when is the best time to take it? I take 75mg morning and night. So far I think its keeping me awake but that may just be the anxiety I am suffering from anyway. I took it a few years ago and I think it got me back. I never lost any sleep anyway! Any advice would be welcome.

Venlafaxine (Effexor) can be energizing and can certainly cause insomnia. One of the advantages of the XR form is that it’s intended as a once-daily medication. It’s fairly unusual for people to take it twice a day (although that was the standard regimen with original Effexor). The only people I’ve got taking multiple doses are those who for some reason couldn’t tolerate or didn’t benefit from once-daily.

Response:

It was HORRIBLE for me. It kept me awake and made me feel as though I had taken an entire box of Sudafed before bed. The worst med ever for me. – Hide quoted text — Show quoted text -sgreen1234 wrote:

Anybody on or been on effexor XL. Is it any good and when is the best time to take it? I take 75mg morning and night. So far I think its keeping me awake but that may just be the anxiety I am suffering from anyway. I took it a few years ago and I think it got me back. I never lost any sleep anyway! Any advice would be welcome.

Response:

I am on effexor xr also (75 mg 2 times per day).  I was taking 2nd dose at bedtime and came to the conclusion that it was not helping my insomnia.  I just started taking the 2nd dose, today, at 1pm to see if that helps.   I also read an article that said effexor xr was an "activator" anti-depressant so that it could antagonize your insomnia.

Anybody on or been on effexor XL. Is it any

good and when is the best time – Hide quoted text — Show quoted text -

to take it? I take 75mg morning and night. So far I think its keeping me awake

Response:

On Mon, 7 Jan 2002 20:14:35 -0000, "sgreen1234" <sgreen1…@ntlworld.com

wrote: Anybody on or been on effexor XL. Is it any good and when is the best time to take it?

Well, it’s effective for many patients… although guideline writers aren’t generally sure whether to call it a "first-line" or a "second-line" drug. Anyway, it sells $1.2 billion at the manufacturer’s level.

I take 75mg morning and night. So far I think its keeping me awake but that may just be the anxiety I am suffering from anyway.

I remember it as being mildly stimulating when I first started taking it (fairly soon after it came out). I also remember Elavil (a very sedating antidepressant) being quite sedating when I first started taking it. However, both tended to go back towards normalcy out over time.

I took it a few years ago and I think it got me back. Any advice would be welcome.

If you have past experience with it working, it should work now. However, it seems that it invariably takes a several weeks for most antidepressants to take hold, despite the fact that the blood levels reach steady-state much sooner than that (Effexor particularly, as it metabolizes quickly).

Response:

Made my heart race like crazy, was not a good match for me

Response:

hi there, i was on effexor, for a year, it made me very pyschotic, i kept overdosing on it, didnt do me much help, but its different for people, it might help you, it might not, only by taking the medication, will you know, whether its any good for you or not! i hope it helps you i was on 225mg a day, btw michael

Response:

I don’t know how quickly it metabolizes, but it is very difficult to stop taking. It took me three months of gradual dose decreases to stop it and I still had withdrawal symptoms. In addition, if you miss it one day or are very late taking it, you can feel like crap. That was my experience. Now take Celexa. "Charles L. Perrin" <c.l.per…@worldnet.att.net

wrote in message

news:2mmk3usnkffpmsdb34q03md662svpvm78p@4ax.com… – Hide quoted text — Show quoted text -

On Mon, 7 Jan 2002 20:14:35 -0000, "sgreen1234" <sgreen1…@ntlworld.com wrote: Anybody on or been on effexor XL. Is it any good and when is the best

time

to take it? Well, it’s effective for many patients… although guideline writers aren’t generally sure whether to call it a "first-line" or a "second-line" drug. Anyway, it sells $1.2 billion at the manufacturer’s level. I take 75mg morning and night. So far I think its keeping me awake but that may just be the anxiety I am suffering from anyway. I remember it as being mildly stimulating when I first started taking it (fairly soon after it came out). I also remember Elavil (a very sedating antidepressant) being quite sedating when I first started taking it. However, both tended to go back towards normalcy out over time. I took it a few years ago and I think it got me back. Any advice would be welcome. If you have past experience with it working, it should work now. However, it seems that it invariably takes a several weeks for most antidepressants to take hold, despite the fact that the blood levels reach steady-state much sooner than that (Effexor particularly, as it metabolizes quickly).

Response:

Anybody on or been on effexor XL. Is it any good and when is the best time to take it? I take 75mg morning and night. So far I think its keeping me awake but that may just be the anxiety I am suffering from anyway. I took it a few years ago and I think it got me back. I never lost any sleep anyway! Any advice would be welcome.

Response:

Question:

Hi… My doctor just increased me from 100mg Zoloft a day to 200mg, and I was just wondering how long it would take to feel a difference, if at all.  I’ve been on Zoloft for six weeks and I’ve just gotten worse.  I’m getting pretty desperate and irrational, so I wish things would get sorted out… -Alex

For me it took several weeks for each dose change to take effect. Be sure to talk to your doctor immediately if you start to feel any serious side effects of Zoloft! My body cannot tolerate more than 50 mg/day.

Response:

Hi… My doctor just increased me from 100mg Zoloft a day to 200mg, and I was just wondering how long it would take to feel a difference, if at all.  I’ve been on Zoloft for six weeks and I’ve just gotten worse.  I’m getting pretty desperate and irrational, so I wish things would get sorted out… -Alex  —–  Posted via NewsOne.Net: Free (anonymous) Usenet News via the Web  —–   http://newsone.net/ — Free reading and anonymous posting to 60,000+ groups    NewsOne.Net prohibits users from posting spam.  If this or other posts

Response:

Question:

The moderator of my mailing list has been busy taking care of her husband who suddenly started swelling up like a balloon. After a bout of diuretics his swelling started going down and he’s been put on Arimidex while in the hospical. She picked up some ChryDIM and will sit on him if necessary while she applies it! If any of you is having trouble getting it up and is also having a bout of lackawanna please get it looked into. It isn’t necessarilily in your head and the necessary battery of tests could save your life! IT IS NOT A JOKE! IT IS NOT "ALEC AND HIS PREOCCUPATION"! It is a real danger. It almost killed 3 people that I know of personally! It has done damage to everyone that I know of with that condition! DO NOT WAIT! — *** http://medstuff.ftn.org – for the sake of your health *** *** http://www.ftn.org  Fight the creatures of The Night ****

Response:

ok, Alec I am about as confused as ever right now.  I just do not understand the msg..  Are you talking about Erectal Dysfunction?  or something else?  I suffer from ED because the nerves going both to my brain and to my back were severed either during my last accident or during the (several???? operations) that followed.  I am able to produce about a 50% result with injections or pump.  It is about the same result.  What else is available?  I will try almost anything that might have a chance of results.  Even the combination of injection and pump only produce about a 60%??  I am a candidate for implant and they have already ordered one for me.  BUT, the doctors in the states do not want to do the surgery until I either move back to the states or eliminate my need to use a catheter.  (I am almost always with a low grade UTI, and that is dangerous with an implant) John – Hide quoted text — Show quoted text – The moderator of my mailing list has been busy taking care of her husband who suddenly started swelling up like a balloon. After a bout of diuretics his swelling started going down and he’s been put on Arimidex while in the hospical. She picked up some ChryDIM and will sit on him if necessary while she applies it! If any of you is having trouble getting it up and is also having a bout of lackawanna please get it looked into. It isn’t necessarilily in your head and the necessary battery of tests could save your life! IT IS NOT A JOKE! IT IS NOT "ALEC AND HIS PREOCCUPATION"! It is a real danger. It almost killed 3 people that I know of personally! It has done damage to everyone that I know of with that condition! DO NOT WAIT! — *** http://medstuff.ftn.org – for the sake of your health *** *** http://www.ftn.org  Fight the creatures of The Night ****

Response:

Newsgroups: alt.support.chronic-pain ok, Alec I am about as confused as ever right now.  I just do not understand the msg..  Are you talking about Erectal Dysfunction?  or something else?  I suffer from ED because the nerves going both to my

It’s low libido. The drive or desire is missing. If you’re checked for Testosterone, you need to be checked for free testosterone and estradiol. Actually, when you have the symptoms, which include lack of stamina, depression, tiredness, anemia, low libido, etcetera and your testosterone is not above the median then you should look at the test results for the following: Total Testosterone. The amount of T circulating in the                     blood. The most common test and the                     villain in so many cases. Since  free T                     drops with age faster than total, it’s                     the measurement that makes so many men                     miserable,  because a "normal" total is                     meaningless except as a measure of                     testicular function. `                     A "normal" level is useless. What you                     want is the top half of the range. If                     your not in the top half then symptoms                     of low T can mean LOW T! ` Free Testosterone   *NOT* SHBG only.  This is the active                     ingredient  that does the job. The                     total can be thru the roof  and the                     free thru the floor. Insufficient Free                     T  and you have ED. Again – the top                     half of the range. ` SHBG                Sex Hormone Binding Globulin reduces                     the amount of free testosterone in the                     blood. It can be countered and is not                     the only binding substance. ` LH                  Leutenizing Hormone – the biggy. No LH                     means no testosterone. The drugs used                     to chemically castrate Prostate cancer                     patients stops LH production.  High LH                           and low testosterone means that the                     pituitary is working alright and that                     the problem is elsewhere. FSH                 FSH stimulates the follicles that                     produce sperm.  Low FSH means                     sterility, but not necessarily ED.                     High FSH and low LH means a problem in                     the  pituitary. DHEA                DHEA is the fuel used by the testes to                     produce androstenedione, which becomes                     testosterone. Low DHEA can cause                     hypogonadism. High DHEA. High LH and                     low testosterone is a sign of either                     testicular failure or  liver problems. Prolactin           High prolactin is a sign of a pituitary                     malfunction, possible tumors, low                     dopamine / libido, etcetera. Estradiol           Too much estradiol will cause negative                     feedback in the pituitary and Low LH,                     also feminization and androgen                     insensitivity. Lower half is good. Total Estrogen      Too much estrogen can cause feminization and ED. Zinc                Zinc deficiency can cause androgen                     insensitivity, loss of testicular                     response to LH and prostate problems.                     Also osteoporosis. Too much calcium leaches out                     your zinc and can cause osteoporosis! TSH                 Hypo/Hyperthyroid can both cause ED. Free T3 Free T4 Liver Function      The liver enzymes convert Pregnenolone                     to DHEA among other things. Note the Free testosterone. Simply measuring the SHBG is inadequate,  since Free T is affected by other factors.  Free T AND SHBG give a very useful picture to an andrologist.  There is some controversy about albumin-bound testosterone being  "bioavailable". To date the data is inconclusive. Watch out for "NORMAL". Too many doctors see that you’re in the "normal" range and turn their brains off. If you’re in the top half in your testosterone levels FOR A 30-YEAR-OLD, then you probably don’t have a problem with the amount of testosterone. Otherwise you might still have a problem. Also watch out for "NORMAL" in prolactin, Estradiol and estrogen. Make sure that it’s the notmal for MEN. Too often the doctor looks at the range for women and switches off the brains. brain and to my back were severed either during my last accident or during the (several???? operations) that followed.  I am able to produce about a 50% result with injections or pump.  It is about the same result.  What else is available?  I will try almost anything that might have a chance of results.  Even the combination of injection and pump only produce about a 60%??  I am a candidate for implant and they have already ordered one for me.  BUT, the doctors in the states do not want to do the surgery until I either move back to the states or eliminate my need to use a catheter.  (I am almost always with a low grade UTI, and that is dangerous with an implant)

I don’t know what might work but I’le pull out my reference manuals. Also look at alt.support.impotence and ignore Jerry Sturdivant. He was deprived of oxygen between the ages of 5 and now and his brain sows it! — *** http://medstuff.ftn.org – for the sake of your health *** *** http://www.ftn.org  Fight the creatures of The Night ****

Response:

Alec, I do not mean to be dis-respectful and I ask this out of my own interest only. But, This is a chronic pain support group, right?  I know that many, many men that have chronic pain suffer from this terrible problem, but…why are you posting questions and answers on this ng, when they should be posted to a group for this particular problem?. You have been a wonderful addition to the group, and you insight on most problems is welcome, but I just don’t see where these questions are needed on this group. Can you explain why they are popping up here so often! Respectfully,  Jo – Hide quoted text — Show quoted text – Newsgroups: alt.support.chronic-pain ok, Alec I am about as confused as ever right now.  I just do not understand the msg..  Are you talking about Erectal Dysfunction? or something else?  I suffer from ED because the nerves going both to my It’s low libido. The drive or desire is missing. If you’re checked for Testosterone, you need to be checked for free testosterone and estradiol. Actually, when you have the symptoms, which include lack of stamina, depression, tiredness, anemia, low libido, etcetera and your testosterone is not above the median then you should look at the test results for the following: Total Testosterone. The amount of T circulating in the     blood. The most common test and the     villain in so many cases. Since  free T     drops with age faster than total, it’s     the measurement that makes so many men     miserable,  because a "normal" total is     meaningless except as a measure of     testicular function. `     A "normal" level is useless. What you     want is the top half of the range. If     your not in the top half then symptoms     of low T can mean LOW T! ` Free Testosterone   *NOT* SHBG only.  This is the active     ingredient  that does the job. The     total can be thru the roof  and the     free thru the floor. Insufficient Free     T  and you have ED. Again – the top     half of the range. ` SHBG                Sex Hormone Binding Globulin reduces     the amount of free testosterone in the     blood. It can be countered and is not     the only binding substance. ` LH                  Leutenizing Hormone – the biggy. No LH     means no testosterone. The drugs used     to chemically castrate Prostate cancer     patients stops LH production.  High LH     and low testosterone means that the     pituitary is working alright and that     the problem is elsewhere. FSH                 FSH stimulates the follicles that     produce sperm.  Low FSH means     sterility, but not necessarily ED.     High FSH and low LH means a problem in     the  pituitary. DHEA                DHEA is the fuel used by the testes to     produce androstenedione, which becomes     testosterone. Low DHEA can cause     hypogonadism. High DHEA. High LH and     low testosterone is a sign of either     testicular failure or  liver problems. Prolactin           High prolactin is a sign of a pituitary     malfunction, possible tumors, low     dopamine / libido, etcetera. Estradiol           Too much estradiol will cause negative     feedback in the pituitary and Low LH,     also feminization and androgen     insensitivity. Lower half is good. Total Estrogen      Too much estrogen can cause feminization and ED. Zinc                Zinc deficiency can cause androgen     insensitivity, loss of testicular     response to LH and prostate problems.     Also osteoporosis. Too much calcium leaches out     your zinc and can cause osteoporosis! TSH                 Hypo/Hyperthyroid can both cause ED. Free T3 Free T4 Liver Function      The liver enzymes convert Pregnenolone        to DHEA among other things. Note the Free testosterone. Simply measuring the SHBG is inadequate,  since Free T is affected by other factors.  Free T AND SHBG give a very useful picture to an andrologist.  There is some controversy about albumin-bound testosterone being  "bioavailable". To date the data is inconclusive. Watch out for "NORMAL". Too many doctors see that you’re in the "normal" range and turn their brains off. If you’re in the top half in your testosterone levels FOR A 30-YEAR-OLD, then you probably don’t have a problem with the amount of testosterone. Otherwise you might still have a problem. Also watch out for "NORMAL" in prolactin, Estradiol and estrogen. Make sure that it’s the notmal for MEN. Too often the doctor looks at the range for women and switches off the brains. brain and to my back were severed either during my last accident or during the (several???? operations) that followed.  I am able to produce about a 50% result with injections or pump.  It is about the same result.  What else is available?  I will try almost anything that might have a chance of results.  Even the combination of injection and pump only produce about a 60%??  I am a candidate for implant and they have already ordered one for me.  BUT, the doctors in the states do not want to do the surgery until I either move back to the states or eliminate my need to use a catheter.  (I am almost always with a low grade UTI, and that is dangerous with an implant) I don’t know what might work but I’le pull out my reference manuals. Also look at alt.support.impotence and ignore Jerry Sturdivant. He was deprived of oxygen between the ages of 5 and now and his brain sows it! — *** http://medstuff.ftn.org – for the sake of your health *** *** http://www.ftn.org  Fight the creatures of The Night ****

Response:

Question:

Eleonore Beaudoin wrote:

"You take a "J", that’s a "dshz" and an "am": "am" You put them all together and they spell "yam"??

I know a different version. I think it was sung by Fred Astaire: Come on and hear the yam man cry… Any yaaaaam today? The sweet potatoes that he’ll fry Will be yaaaaaam today The little step that you see him do With every yam that he sells to you Is something that you ought to try COME AND YAM TODAY … Come on, shake your de-pression And let’s have a yam session! There’s that long note. One, two, three… yaaaaaaaam… And much more in the same vein…. I’m afraid I never learnt the full declension of peanuttus butterus. Sorry. I suggest your bird go back to theoretical physics, since as I remember he was on the verge of making some important breakthrough there… Yam-for-brains

Response:

- Hide quoted text — Show quoted text -OB (obl…@my-jamtomorrow.com) writes:

Eleonore Beaudoin wrote: "You take a "J", that’s a "dshz" and an "am": "am" You put them all together and they spell "yam"?? I know a different version. I think it was sung by Fred Astaire: Come on and hear the yam man cry… Any yaaaaam today? The sweet potatoes that he’ll fry Will be yaaaaaam today The little step that you see him do With every yam that he sells to you Is something that you ought to try COME AND YAM TODAY

I remember that one too: Henry the eight I yam I yam Henry the 8th I yam I yam I’ve had troubles with my Windows before They were jam 7 times before " etc?

… Come on, shake your de-pression And let’s have a yam session! There’s that long note. One, two, three… yaaaaaaaam…

yam ta voix yam tes mains Yam ton ti frere ta tite soeur to ti chien Yam papa Yam maman Yam meme toi aussiiiiiiiiii:)

And much more in the same vein…. I’m afraid I never learnt the full declension of peanuttus butterus. Sorry. I suggest your

It is soemthign like "Arachibus elephantibus plantibus cruncheous barbecuorum"…

bird go back to theoretical physics, since as I remember he was on the verge of making some important breakthrough there…

Oh he made the break through: he sold out to the Russians:( (How did you think he leg got amputated anyway? You did not *really* believe a cat chewed THAT bird’s leg off, did you?? Scientific torture, I tell ya!! I should never had let him learn to long on the net:(

Yam-for-brains

Seems like the Russians already used the jam-brain virus he created then…:(. That’ll teach me to remember to not trust a bird in the hand….:(. Specially not a pigeon (messy beaucoup!:)) —

Response:

On Mon, 17 Jan 2000 14:28:09 +0100 OB <obl…@my-deja.com

wrote: ric had the idea of organising another pantomime: Raff could be a beautiful professional woman,

What the giggle? Should I be lereificated once agigglegain? Oh my!

Boris could be a long time ASLer who’s got a bone to pick with Raff,

Is there any BBB? (Borisk of Boring Boreruns).

and you could be Bill Gates… Tell you what – Bill could be Gates,

What do you mean by "could"? Bill *is* Gates. He is disguised because nobody should suspect that, in secret, he uses Netscape!

and that would leave me to be the Horse again, a part with which I am familiar, neigh, word-perfect and have played to packed and boisterously appreciative audiences in venues as diverse as Margate and Southend-on-Sea.

What is the difference between these two audiences? I know that Margate is a town near Folkestone, but what about the other? Or Southend-on-Sea stands for S.O.S.? (Save-us! OB Sucks!) Have puntomime The beautiful Lerei — Free audio & video emails, greeting cards and forums Talkway – http://www.talkway.com – Talk more ways (sm)

Response:

OB, Thank you for this most edifying lesson in Latin. I guess my teachers had no time for breakk or never heard of jam. I now will start teachign Thcip Tchip Latin lessons and will eb able to do it as it shoudl be done: "Jam yesterday, Jam tomorrow, but no Jam today". After a few days he might attack me of course, as peanut buter alone is rather hard to swallow…. Would you happen to knwo how to say "peanut butter" in Latin, BTW? For lack of knowing how to say it, Tchip Tchip refers to it as "MMMM-mmmMMM!", where this comes from the fact that he can not open his beak when it is full of (jamless) peanut butter, thus happenign to make the sound "M", ever since. I am now trying to teach him words starting with "M" using an old Sesame Street tune that went: "You take an "M", That’s an "MMMMmmmm" and an "a,n" : "an". You put them all together and  they spell "Man" That’s *Man*, "M,a,n" : "Man"! You take an "M", That’s a…HhhhhMMMMmmmmmmm And an "a,n": "an", You put them all together and they spell "Man". But so far, he just humms it, going M-mm-m-mmm, mm-mm-mm Mmm-m-m-mmm MMMMM Mmm-mm-mm-mm-m-m-m-m M, M, M! and so on…. Think I shoudl start with the Jam Latin Lesson first? "You take a "J", that’s a "dshz" and an "am": "am" You put them all together and they spell "yam"?? Would not the Yod of the latin "J" get him all confused…??? In that case the Latin for Peanut Butter might help solve this and offer him some better adapted option… Thanks, Chloe – Hide quoted text — Show quoted text - OB (obl…@my-deja.com) writes:

ric wrote:

>> I’m at a loss to understand "jam tomorrow"… like maybe th heck with >> tomorrow?… > "Jam yesterday, jam tomorrow but never jam today". When I was a youngster, back in > the early nineteenth century, every schoolboy had to learn this in their Latin > classes. It describes the correct usage of the Latin adverb "iam" (cognates in > Spanish "ya" and in French "d

Question:

Would anyone tell me expiriences on this medication?

I take Sinequan which is doxepin hydrochloride. It is an older, tricyclic anti-depressant. I find it very sedating. I am taking 150mg/day. Gives me the munchies. — bev . . . . . . . . . . . . . . . . . http://members.tripod.com/~Veb

Response:

I slept non-stop for two days…my sister and boyfriend dragged me to the BR when they could. I stopped taking those pills right then. Nowadays they have MUCH BETTER meds…. Try Prozac, effexor,etc. Kathy

Response:

Would anyone tell me expiriences on this medication?

Response:

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

Response:

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

… read more »

Response:

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

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

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

Response:

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

Response:

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

Response:

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

Response:

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

Response:

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

Response:

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

Response:

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

Response:

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

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

Response:

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

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

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

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

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

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

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

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

stress plays a major role in dystonia!!!

Response:

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

Response:

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

Response:

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

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