medication

[claire01]

has anyone been prescibed or had 'ACETAZOĹAMIDE'

[anihol]

I did but it made me feel worse than what I was taking it for. Some people find it really useful though so give it a go.

[claire01 in reply to anihol]

I have stopped it like you seemed to make me feel worse...felt shocking was quite scary at times 😏

[benning]

No I don't like taking Meds?

[majajefferies]

Yes, for epilepsy

[springlove]

Yes, I’m taking that for glaucoma to save using so many eye drops. Haven’t noticed any change in ataxia though

[Scrunch1974]

I was on a high dose of acetazolamide. It wasn't as effective as my neurologist had hoped so I was put on topirimate. Both have some nasty side effects. ☹️

[lucymockingjay]

I was on it years ago but became less effective after.a.while. Now take topirimate and it is much better. It totally changed my daughters life around.at least in regards to EA2

The side effects can be frustrating as you can get lots of pins and needles. , and anxiety especially if your already predisposed towards it. It is important to start on a low dose and build up slowly. It is better than constantly falling and being ataxic all the time, it didn't feel like it was episodic to her lol

I guess it's a case of what's worse, the condition or the side effects. In Chloes' case she had no quality of life, her ataxia was that bad at one stage, and the topirimate made a huge difference so the side effects were worth it. Unfortunately she then got diagnosed with loads of other things which is just typical isn't it!

She is amazing though and she just keeps going however challenging life gets for her.

Hugs to all