hi,I have a question for all sufferers of episodic ataxia type 2.I have ea2 and currently take Diamox,and have done for about the last 22years.most of the time they work fine.however my question is about epileptic drugs and ea2...over the course of the last 4or5 years my neurologist has tried me on different meds.namely,phenytoin,carbamazepine,gabapentin and lacosamide.all of which are epileptic drugs.and sadly none of them worked for me...so I would like to ask all ea2 sufferers,if they have ever been on anti epileptics which have worked for them...I did hear once that anti epileptics just don't work for ea2,so im wondering why my neurologist wants to try them each time...many thanks....firefox
My daughter was diagnosised with ea2 this past spring. She recently turned 7. They put her on Diamox, a high dose, the highest she can be on, which seems to be helping. She also has epilepsy and has been on several anti epileptics. Currently she is on Lamictal.
Ive been taking Diamox for my EA2 for around 15 years. Sometimes it seems to work and sometimes it doesnt, my neurologist says thats the only thing that they have right now that helps some people. They are currently working on a new drug that should be better. Some neurolists think that ea2 is a form of epilepsy, but its not, its a completly different gene that is affected.
hi,firefox.i am relatively new to ea2.diagnosed 11/2 yrs ago.i am on Diamox as well as topiramate which is an anticovulsant, among it's many uses.it works pretty well for me at this stage of my illness.my neurologist feels all my problems arise from an ion channel disorder.epilepsy is an ion channel disease.my ataxia is secondary to familial hemiplegic migraine syndrome.that syndrome is also thought to possibly be an ion channel disease.the topiramate was actually the first drug they tried on me.my best results are with the combination of the two.i wish you well.
I have SCA unknown cause. In 1990 I had a seizure in my sleep and around that time
started to experience de ja vu episodes.
That was my only seizure and the de ja vu eventually tailed off.
I don’t think a diagnosis of epilepsy (at that time) was correct, I was obliged to take
epileptic drugs in order to be able to drive, this continued for the next 20yrs. When
SCA was diagnosed in 2011, the Neurologist thought the original diagnosis of epilepsy
was questionable. Currently I don’t take epileptic meds.
I’d be interested to know whether anybody else had de ja vu episodes. xB
I just posted about EA2 before seeing this. I was just diagnosed at 40 after several years of symptoms. My balance was so bad I was barely leaving the house. Doc put me on verapamil. It’s a calcium channel blocker. It has made a significant improvement in my balance, although it wanes sometimes. I think the next step is to try me on acetazolamide. It’s a diuretic but helps with motion sickness, which I often get. I also do lyrica and Cymbalta which I think help with the neuropathy. Do you have muscle cramping and pain? I’m not sure if mine is due to EA2 or something else.
Just to say, my Neurologist suggested I try Acetazolamide for BPPV (vertigo turning over when lying down). I did actually suspect my ataxia was Episodic, but that diagnosis has been dismissed for now.
The post you replied to is an ‘archive post’ from 2013, so it’s possible you may not get a reply from the original member xB