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Scrunch1974•

Hi my names tracy,42 years old just been diagnosed with ataxia,awaiting official letter to find out type but have been prescribed acetazolomide slow release to help with symptoms. Anyone else been on this medication?im feeling very anxious at the moment as I don't really have a lot of information about ataxia.i have been signed off work for 5 months now and had to stop driving.i am hoping this medication helps when my surgery finally get it in stock!!

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wobblybee

a year ago

Hi Tracy, welcome🙂 My Neurologist prescribed Acetazolamide for me, she thought it might help with BPPV (dizziness turning over in bed). It has helped somewhat but I get most benefit from remembering not to lie on my right side😏 But, it is also prescribed for other symptoms. It didn't make me drowsy exactly, more apathetic. One of my symptoms is peripheral neuropathy (pins and needles) in my hands and feet, Acetazolamide increased the sensation to a point where it was almost unbearable. For this reason, I've reduced the tablet from 2, to 1 daily.

Definitely read up about ataxia in general before your next Neuro appointment🙂 ataxia.org.uk and ataxia.org

The second site is the National Ataxia Foundation in the US, you may find additional useful information on there🙂xBeryl

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wobblybee

in reply to Scrunch1974

a year ago

😏 Current thinking is it's related to a Recessive gene. There is Atrophy on the MRI, and I do experience recognised ataxia symptoms but a recent blood test showed another condition could be contributing to the mix. I expect to be given more information in January, always a waiting game😉 It's very common to seem to be struck dumb at a Neurologist appointment😏 Beforehand, lots of questions spring to mind but once you're face to face 🤔 And, it's not easy taking information in at an appointment. Sometimes medical jargon can throw you, and there's the added stress of unfamiliar surroundings etc... never mind there may have been difficulties getting there in the first place. If there's ever something you don't understand, try and remember to ask for a simple explanation🙂 It may take a while before you notice any improvement with the medication, fingers crossed😉xBeryl

rankin1st

a year ago

Hi Tracy hopefully the info beryl sent you was helpful and kept your mind busy. I would write your questions down for next time you see your Neurologist. Re the stressing I know it's really difficult but try to not constantly fret about it as that really will make your condition worse. Trying to come to terms with ataxia isn't easy. We are still waiting for diagnosis of type a year later still no answers but we are learning to accept that and try and find out as much info as we can and change what we can like stress and diet and accepting the rest that we can't change. Hope you are doing ok. Use the forum to connect and talk about it but remember the more you stress the worse your symptoms can be. Maybe ask your GP for some CBT counselling to help you manage the stress. All the best Lisa

oh by the way not me but husband who has ataxia type unknown.

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