Acetazolimide (Diamox) works! Yeah!

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

Acetazolimide (Diamox) works! Yeah!

Postby dtmguy on August 15th, 2011, 11:50 pm

It has been a couple of years since I posted here last. My neuro, after 7 years of hearing me talk about twitching, decided to trial me on acetazolimide (diamox) as he had heard it helped some people with twitching as it slows neural excitation without the side effects of tegretol and other anti-epileptics. While I'm not sure of the exact action in neurological applications (diamox is primarily a diuretic), I'm surprised that I'm now almost twitch free within a day of taking it--quite a change from the usual. Diamox does have side effects for me, namely carbonated drinks now taste flat and repulsive, and I occasionally get some tingling in my feet when I stand up quick, but I was warned about both beforehand so they were not a surprise and they are not unpleasant sensations. As long as the relief holds, I'll report on it occasionally. I'm told that if it works, I'll have to get my electrolytes checked a couple times a year as I believe diamox selectively eliminates either sodium or potassium as it increases water loss through urine.

I've also found that topical blocks of the sphenopalatine ganglion (I was taught how to self-administer this by a pain dentist in Chicago) with a long q-tip and topical anesthetic also help, but fairly short-term.
dtmguy
Hero
Hero
 
Posts: 393
Joined: August 25th, 2005, 10:25 pm

Re: Acetazolimide (Diamox) works! Yeah!

Postby zenseo on August 16th, 2011, 11:02 am

Thanks for the information, and good to hear from you again.

You and I have been going at this about the same time and from a quick look back at our posts, we both began twitching post-Lexapro. After seven years of just living with this, I am ready to start treating the symptoms more aggressively. Please keep us posted.

Best,
Sean
User avatar
zenseo
Selfless giver of time
Selfless giver of time
 
Posts: 184
Joined: November 22nd, 2004, 10:53 am
Location: Michigan

Re: Acetazolimide (Diamox) works! Yeah!

Postby nonstop on August 16th, 2011, 6:03 pm

7 years and you haven't done anything about it??? Holy crap.
nonstop
Member
Member
 
Posts: 40
Joined: January 31st, 2011, 5:20 am

Re: Acetazolimide (Diamox) works! Yeah!

Postby zenseo on August 16th, 2011, 6:19 pm

As far as trying prescription drugs, other than benzo's, I haven't. I didn't mean I haven't tried anything. In fact, I've tried most everything. It's only recently that I've seen members posting about success with drugs like anti convulsants.
User avatar
zenseo
Selfless giver of time
Selfless giver of time
 
Posts: 184
Joined: November 22nd, 2004, 10:53 am
Location: Michigan

Re: Acetazolimide (Diamox) works! Yeah!

Postby dtmguy on August 16th, 2011, 6:24 pm

It isn't that many of us haven't tried about everything. Nothing I've tried, among everything my neuro has suggested, has worked very well. Benzos, depakote, and others. I've been to Mayo and knocked on about every door I could find to get an answer or solution. Diamox is doing pretty good into day 2 for me. if I do twitch, it is really minor, and I slept really well last night for the first time in a long time. About all I've had trouble with is giving up diet coke, as it now tastes really funny.
dtmguy
Hero
Hero
 
Posts: 393
Joined: August 25th, 2005, 10:25 pm

Re: Acetazolimide (Diamox) works! Yeah!

Postby Shanny63 on August 16th, 2011, 7:45 pm

Thank you for posting about the drug your using..I might ask my dr about it...I have found in myself that oxycodone which intake for migraines stops me twitching completly...unfortunately it also makes me incredibly nauseous so it's not an option for me to continue to take it for the bfs....I have just started taking malic acid which is a vitamin which the health food store recommends for people who twitch with fibromyalgia...so I'm giving it a try at he moment...best wishes to you all shannon
User avatar
Shanny63
Saint
Saint
 
Posts: 609
Joined: July 6th, 2011, 2:46 am
Location: Ballarat australia

Re: Acetazolimide (Diamox) works! Yeah!

Postby Richard on August 17th, 2011, 10:13 pm

Could you share with us your dosage, frequency, etc.

Thanks!
If you are a Christian, please say a quick prayer for me. It would mean a lot to me.
Richard
Saint
Saint
 
Posts: 633
Joined: May 14th, 2007, 6:09 am
Location: Chicago, IL

Re: Acetazolimide (Diamox) works! Yeah!

Postby dtmguy on August 17th, 2011, 10:45 pm

Sorry I didn't mention dosage. I'm taking 250 mg tabs 3 times a day in a 30 day trial, at which time I'll report back to my neuro and get electrolytes tested to see how well I'm tolerating it long-term. This drug won't torch your liver like many of the anti-epileptics. Side effects include a certain change in taste of carbonated drinks. I didn't get any extremity tingling (tolerable) today like I did when I started, and the urinary frequency is going down as my kidneys are making friends with the med. All those side effects are known. Mountain climbers take this stuff all the time to prevent altitude sickness. As I understand it, it is a fairly safe drug if your kidneys are normal. If your doc needs to talk to another doc that is prescribing it, PM me and I'll pass along the name of my neuro. He didn't volunteer, mind you, but if a few docs ask him, he probably will tolerate the inquiries. My neuro is NOT a BFS expert, but had a patient or two that responded and has heard of others. Diamox has use in epilepsy, so like other more toxic drugs like tegretol, slows down neurons somewhere by means unknown. I have gotten a twitch or two, but they're miniature ones compared to before.

Shannon, likewise I found that opiates (morphine) that I got during surgery completely stilled my twitching, and like you, they nauseated me. That might make you a candidate for low-dose naltrexone therapy, which my neuro is not quite into yet. That therapy raises your natural opiates.
dtmguy
Hero
Hero
 
Posts: 393
Joined: August 25th, 2005, 10:25 pm

Re: Acetazolimide (Diamox) works! Yeah!

Postby raindog on August 19th, 2011, 4:11 pm

I was given Diamox but only managed a week. Had some terrible reactions such a flushing, waking up trembling, abdo pains and severe tingling in my hands and feet.

1 was on one 250mg tablet that i had to break in half and take twice a day. In the week i took them i didnt notice any imrpovement to my twitching and cramping.

This condition is really an individual thing and i'm really pleased that you're getting some relief with this medication. Keep us updated too :wink:
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Acetazolimide (Diamox) works! Yeah!

Postby Richard on August 25th, 2011, 8:53 am

I am bumping this message to see if we can get an update from dtmguy. I am also leaving him a PM.
If you are a Christian, please say a quick prayer for me. It would mean a lot to me.
Richard
Saint
Saint
 
Posts: 633
Joined: May 14th, 2007, 6:09 am
Location: Chicago, IL

Re: Acetazolimide (Diamox) works! Yeah!

Postby dtmguy on August 25th, 2011, 2:19 pm

I'm now going on three weeks, and although the effectiveness has waned a small amount from when I started, I'm still finding that my twitching has dramatically decreased on diamox. I do miss being able to taste diet coke accurately though--it tastes bitter and flat now! I also have learned that I don't let my legs "fall asleep," as they really tingle when recovering now. Other than that--no bad side effects. I really notice when I miss a dose, though.
dtmguy
Hero
Hero
 
Posts: 393
Joined: August 25th, 2005, 10:25 pm

Re: Acetazolimide (Diamox) works! Yeah!

Postby Richard on August 25th, 2011, 9:23 pm

dtmguy wrote:I'm now going on three weeks, and although the effectiveness has waned a small amount from when I started, I'm still finding that my twitching has dramatically decreased on diamox. I do miss being able to taste diet coke accurately though--it tastes bitter and flat now! I also have learned that I don't let my legs "fall asleep," as they really tingle when recovering now. Other than that--no bad side effects. I really notice when I miss a dose, though.


dtmguy, I appreciate you posting this. Each year, around this time because it is when my kids go back to school, I try something to help with this condition.

I am planning to take this email stream to my primary care doctor and see if he will let me give it a try.

He seems pretty willing to let me try different things as long as it won't harm me. He has told me straight up 'Why not'. :)

I have pretty much given up on neurologists after being told 'just ignore it' one to many times.

It will probably be a week or two. But when I try it I will posts my results.

If you get a chance, please post every few weeks about how you are doing.

BTW I LOVE coke zero. But the truth is it is probably not that good for me. So I am willing to give it up, if need me.

Cheers.
-Richard
If you are a Christian, please say a quick prayer for me. It would mean a lot to me.
Richard
Saint
Saint
 
Posts: 633
Joined: May 14th, 2007, 6:09 am
Location: Chicago, IL

Re: Acetazolimide (Diamox) works! Yeah!

Sponsor

Sponsor
 


Return to Symptom Management

Who is online

Users browsing this forum: Google [Bot] and 1 guest