Growing up with episodic ataxia

Hi, I started getting dizzy spells when I was about 12, like many children I was unable to really explain my symptoms. After years of seeing specialists I had been diagnosed with epilepsy and in the end migraines. I decided to try again when I was mid twenties as my attacks were getting worse and at work when stressed really couldn't function finally seeing a neurologist I was diagnosed with episodic ataxia type 2. All the symptoms match but to my knowkedge no-one else in the family has ever suffered with these sort of attacks. Although still suffering the same, at least I know what it is. I'm interested to here the experiences of others. I have had to give up so many things I love, mainly spot, it has affected me playing rugby, football and cricket and affects me at work when in stressful or high pressure situations.
Samspade78 Samspade78
31-35, M
2 Responses Dec 8, 2012

Hi

I also have similar symptoms and have seen numerous specialists over the years who suggested Diamox aka acetazolamide unfortunately in my case this hasn't done me any good and has actually gave me added side effects, be careful.

Stevie

Hi,

That's interesting, I have had a lot of kidney stones which has been puit down to the fact that I have taken Acetazolomide for so long Unfortunatley recently I have been having an attack up to 3 times a week and in the new year hoping to go back to my specialist to see if there are any other options as I'm getting desperate and affecting my every day life far too much.

Thanks
Sam

Hi,

Your story is very similar to mine. When I was diagnosed, however, I was started on Diamox, which did a world of good. Have you tried this?

Lori