Dr wants me to try Diamox

Has anyone had any luck with Diamox?

Also known as Acetazolamide, in case that's helpful. (I have no experience of it myself).

HI,

my consultant tried me on Diamox last June and I haven't looked back, my attacks improved and I began to feel stronger. I have to admit that this week I have just had to up my dose but its been a miracle drug for me.

My attacks haven't stopped but they are now much easier to handle, you may get pins and needles though but they won't be to bad and will ease after a while.

Good luck x

Deb

Hi PG

My neuro put me on Diamox around 12 years ago. I have Cerebellar Ataxia of unknown origin. Although, I was also diagnosed with Haemochromatosis around 9 years ago and they strongly suspect that it was the high iron levels that may have damaged my brain. I have improved so much since my iron levels were reduced. The jury is still out on that one. I am sure Diamox has helped me. They had to play around with the dosage for a while, but once they had it "right", I was OK. I don't get the severe "attacks" like I used to. They are much easier to manage. It took me a little while to get used to being on it.....I seem to be supersensitive to all those drugs that are marked "Do not operate heavy machinery" etc...not that I was intending to LOL So for that reason they halved the initial dosage I was on. I also had pins and needles when I was first put on it....I have had no other side-effects. I hope it works for you.

Sincerely

TassieRose

PG,

I was on another forum and one poster was on Diamox for 16 to 18 months for improvement on his gait disorder. He

posted it didn't work for gait disorder.

Dear PG, From what I understand (?), Diamox is sometimes helpful for EA (Episodic Ataxia). As my ataxia is 24/7 of unknown cause, I've never been offered it. I sincerely hope Diamox helps you, if you're prescribed it! ;o)

Dear TassieRose,
I use a combination of Diamox and Klonopin for EA, so far better than the use of gabapentin. Be careful though, one of the side effects of diamox is high blood sugar. I still have issues with falling and balance loss, so I treasure the good days and watch it on the bad. Hope this is of some help.

Hi PG - I’m not on it, but I did a search for you (in the search box by the sign-in link):

http://www.livingwithataxia.org/main/search/search?q=Diamox

No luck for me I'm afraid, also caused a bout of very bad depression (which is common for me on these types of meds, so if you haven't reacted well to things like topomax consider this factor).
It is also know to loose it defectiveness over time, however, for some I heard some great things.

I have Cerebellar Ataxia and have been told that drugs (any) won't help! True?

Ed.

There aren’t any drugs prescribed specifically to control/cure SCA.
Associated symptoms can be alleviated by medications/treatments.
In some cases, a vitamin deficiency is diagnosed that is specific to
Ataxia but this can only be verified by a Neurologist.

Well took first pill yesterday n unfortunately made ill within 15 minutes. Bummer


Beryl, I went to many neurologist over 16 years and none could diagnose my problem. So I finally went to a MD doctor who specializes in nutrition she found my problem thiamine deficiency on the first visit she knew what blood test to run.

I found out main stream doctors are not trained in nutrition adequately in med school only if you are going into the field of nutrition. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430660/
Beryl Park said:

There aren't any drugs prescribed specifically to control/cure SCA.
Associated symptoms can be alleviated by medications/treatments.
In some cases, a vitamin deficiency is diagnosed that is specific to
Ataxia but this can only be verified by a Neurologist.

hi,lute! not sure what type of ataxia you have.i have episodic ataxia2 as a component of hemiplegic migraine disease.my ataxia was pretty bad.i fell daily.my neuro put me on Diamox 2 years ago.i agree,it was horrid.but you must stay with it.drink,drink,drink.a lot of the badness you feel is dehydration.it is also used as a diuretic.within a week,even before I was used to the drug,i knew it was working for me....I stopped falling.i did have a bout with kidney stones which is a possible side effect.but I have been cleared to continue with the Diamox since it has helped me so.again,drink,drink,drink till you think you're going to pop!.....good luck,lute.I hope this helps.

Hello Trini

Thankyou for that information...I did not know it raised one's blood sugar...something to keep an eye on. Sorry I have been so long in responding... had a bout of gastro and a temporary return of old symptoms while I was crook [Aussie for "sick"].



trini said:

Dear TassieRose,
I use a combination of Diamox and Klonopin for EA, so far better than the use of gabapentin. Be careful though, one of the side effects of diamox is high blood sugar. I still have issues with falling and balance loss, so I treasure the good days and watch it on the bad. Hope this is of some help.