New to all this

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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  • 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

  • Hello.😊thanks for the reply.im having terrible trouble with balance and coordination hence the reason I have stopped driving.as a passenger in a car I feel as though I'm drunk and that my eyes just can't keep up with passing objects. I have been warned of the side effects of the tablets but I'm willing to give them a go .😳

  • 😏It must horrendous. I empathise, I've also had long standing eye problems. Try the medication, not everyone has side effects🙂xB

  • What type of ataxia do you have wobblybee?i should have asked my neurologist questions really but to be honest I probably would have forgotten what he said by the time I got home!

  • 😏 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

  • Oh gosh.why such a long wait for answers??do health professionals not realise that this causes patients to worry and frett.!!i have just been diagnosed and I I think waiting 2 weeks for a letter to be sent to my doctors bad enough.i have got all sorts going on in my mind and I'm a stress head anyway!

  • 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.

  • Was diagnosed March 2016 and saw neurologist again last month and told no medication available to help with shakes and had first cataract eye op yesterday so apologies if any spelling mistakes. Still managing to walk but very unsteady and try to shop at supermarkets where I can use a teolley for support. Don't go into town alone now need hubbys arm to suppot me

  • It really sounds awful for you suzieg56 . I hope you feel better soon after your eye op.i have only recently been diagnosed and 4 weeks ago I saw neurologist who took blood and when I rang for results they said they aren't back yet! I am amazed how long things take.i have just started taking acetazolamide so it's early days yet.do they have the electric wheelchair trolleys in any supermarkets near you? Might be helpful to you. Best wishes 😊

  • sounds like me! Have you tried the breathing exercise, when you get the shakes, I am putting the shakes down to anxiety, so I breathe through my nose deeply and exhale through my mouth and I am sure it helps.

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