Has anyone tried acetazolamide and had good luck with it? Or any bad side effects I should know about? I am thinking about trying it for my ataxia (not sure if it is episodic or gluten-induced).
Hiya Jennifer,
I am on acetazolomide, & any side effects are minimal for me & the benefits far out weight the few minor side effects.
A Good Neuro may suggest you try the drug if they suspect that you have Episodic Ataxia, I don’t know of it being used for Gluten induced Ataxia. However this drug MUST be used ONLY under strict medical supervision, as it can have long term side effects which need monitoring regularly.
I hope you soon find answers to your questions by a good doctor.
Dawn x
Hi Dawn,
Thanks for answering…how long have you been on the drug…I did tell my migraine doctor about the episodic ataxia and he said he would look in to it and see what he could find out about it. He knew about that drug and said they do prescribe it for some things. What are the long-term side effects you are talking about? Is it one you can stay on forever, if it works…do you have to keep increasing your dose or do you just get to one dose and stay with that? BTW, how much do you take of it? I have read most people are taking 500 mg twice daily. If you want to contact me on my regular email, that is fine too…it is jpitt@pixius.net
I did read about a doctor that specializes in gluten ataxia in Sheffield, England. My dad lives in Wales, so I could always go see the doctor and then go see my dad as wll. But there are also some really good docs at UCLA in Los Angeles I’ve heard about, so I am checking into them.
Thanks for the information,
Jennifer
Dawn Wooldridge said:
Hiya Jennifer,
I am on acetazolomide, & any side effects are minimal for me & the benefits far out weight the few minor side effects.
A Good Neuro may suggest you try the drug if they suspect that you have Episodic Ataxia, I don’t know of it being used for Gluten induced Ataxia. However this drug MUST be used ONLY under strict medical supervision, as it can have long term side effects which need monitoring regularly.
I hope you soon find answers to your questions by a good doctor.
Dawn x
Hi Jennifer, my daughter who is 13 had Acetazolomide a few years back but for her it was a nightmare, she had to have blood tests every week because it can affect your bicarbonate levels in your blood and she needed so much bicarb supplement in the end and the med made her so lethargic and unwell that she was taken off it. She now takes Gabapentin for neuropathic pain which seems to suit her.
I hope that the med suits you and helps alleviate your condition.
Take care
April
Hi I used to take it but it had minimal effect for me and there hasn’t been any noticeable difference since I stopped taking it. My 12 year old took it for a while and it made her ill. She’s noe trying it again but on a very low dose initially. She’s on 125mg a day and they will build it up if she tolerates it. Once that’s stable they are going to give her something for the migraines too.
Hi,I have been taking Acetazolamide since the middle of December. I really think that I feel worse - more double vision and general weakness. I tried to give up 2 weeks ago but had a terrible couple of days and decided to take it again. Has anyone had similar problems?
Thanks,Anna
Hi Jennifer,
I've been on it for the last 18 months, the side effects are minimal and for me the benefits have been amazing. My attacks have lessened hughly and when I do have them they aren't as dipilitating as previously.
It was one of the ways my neuro was happy to diagnose me.
Good-luck with it ? This is not a game show..Ataxia is more serious then you are thinking right now..Do not touch that Drug..
Ozzy knows what I'm talkin' bout'...I would never lie >>>>never..
Hi Ozzy,I was wondering how Acetazolamide affected you.I have been taking it for about 6 weeks and am having a hard time. Thanks. ,Anna
Hi, my daughter took Acetazolomise but had to stop because she had to take sodium as it badly affected her levels and she had blood tests twice a week and I’m the end we couldn’t balance it by giving her so much sodium to counteract the affect it had on her. I hope you have better luck with it. Thanks April