Anyone have EA2?


I’m curious to talk to those that have been diagnosed with this specific ataxia. I’ve been really struggling with neuropathy, fatigue, dizziness, nausea and sometimes awful migraine. My balance has improved with verapamil, which I am grateful for. Nonetheless, the other symptoms are just as debilitating. Anyone else experience all this with EA2?

Hi… I have cerebellar ataxia…I am struggling with the same symptoms! Plus, my balance is quickly worsening… So frustrated… Will EA2 help me?

:thinking: Michael, EA2 refers to Episodic Ataxia type 2. I’m wondering if you’ve misunderstood, it’s not a medication :slightly_smiling_face: xB

EA2 means Episodic Ataxia Type 2. Did you have any genetic testing to diagnose Hereditary Spino cerebellar Ataxia? When did your symptoms begin?

I meant verapamil…

Did not have genetic testing… Symptoms began about 6 years ago…

To find out the cause for “cerebellar ataxia” is important before pursuing treatments. I would recommend an “Ataxia Clinic” such as in Johns Hopkins to make a hard diagnosis first.

:slightly_smiling_face: Ah, ok. Verapamil is primarily prescribed for treatment of high blood pressure. It may also be prescribed for prevention of migraine, and cluster headaches. However, one of the listed side effects is headaches :smirk: If you are struggling with symptoms Michael, it’s worth speaking to your Neurologist. There are prescribed medications to help alleviate specific symptoms :slightly_smiling_face: xB

I received my diagnosis from Dr. Rosenthal at Johns Hopkins…

I have cerebellar Ataxia according to Johns Hopkins…

Liana Rosenthal is a good Neurologist. She knows what she is doing. Just interested, what type of cerebral ataxia do you have? I have SCA-6 which is hereditary & autosomal dominant. Before I saw Dr. Rosenthal, I was told by other neurologists to try shots of high doses of Solumedrol ( steroids) and/or infusion of Immunoglobulin- which are considered big guns. The diagnosis made by Dr. Rosenthal gave me the peace of mind. And although there is no medical cure or symptomatic treatment with medicine for genetic SCA ( Spino cerebellar ataxia) yet, I find myself not chasing all kinds of medical treatments, which have their own shares of side effects. You may also be interested in reading about “Gluten” induced ataxia.

I have those symptoms as well but my neurologist does not tell me a specific kind of CA. Its frustrating. I think it’s related to Dilantin but I am not sure. I have those symptoms you mention too.

Dilantin ( Phenytoin ) causing Ataxia is usually associated with cerebellar atrophy (shrinkage ). An MRI of the brain can tell you whether there is cerebellar atrophy or not.

:slightly_smiling_face: Lin-da, did you take Dilantin for a long time? I was prescribed Carbamazaphine for several years, this can also be linked with ataxia. Although, I can recall a couple of instances years BEFORE taking this, when my balance was affected, and that was well before other ataxia symptoms kicked in. But my main suspicion is that Carbamazaphine may have caused my initial eye condition, Iritis. Unfortunately, my Neurologist at the time ignored my concerns and insisted I keep taking the medication. For a short time I also took Sodium Valproate, another contender :smirk: xB

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Beryl, yes, I took Tegretol prior to Dilantin, although it didn’t work. The Dilatin I took for 40 some years because it did work mostly. I never took Sodium Valproate. I think a lot of drugs cause ataxia because it was considered an “acceptable side effect”.

:smirk: I suspect you may be on to something there. When I had chemo, one of the components was linked with causing Neurological problems. It certainly had me floored. My Neurologist then omitted it :smirk: xB