Dealing with Episodic Ataxia.: So I have had... - Ataxia UK

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Dealing with Episodic Ataxia.

Ben_EA2 profile image
20 Replies

So I have had episodic Ataxia type 2, since I was about 11 and I am 35 now. It is one of the more rarer types of ataxia, so it is tough to find other people, who have it. I have the coordination problems in episodes, except the nystagmus (involuntary eye movements) which is there outside episodes too. There are certain triggers, which can set off the episodes. I have found that if I do things I'm comfortable with, episodes are less likely to happen, as certain triggers like anxiety, stress, excersion can set them off. I do work full time, and although I have episodes occassionally there, I am usually okay. Maybe because I feel more comfortable and at ease there with people I know.

MY problem is that I am quite afraid of challenging myself. For example I think to myself that I wouldn't mind going to the cinema. Then I get all negative and think an episode is bound to happen at some point (it has before) so it puts me off going. Guess my condition is very situational too. At home it wouldn't happen. So then I end up doing the things I usually do and nothing changes. I am not sure how to get out of this mindset.

Although I feel more comfortable when I'm not alone as if anything happens I could have some help. People have presumed I was drunk before and a more disabling episode happened in town about 13 years ago and on that occasion someone called the police. I guess I am worried about what people think too when I am not myself. It is embarassing.

I am hoping others can relate to this.

20 Replies
Julia808 profile image
Julia808

Wow keep giving information it is needed, my son has EA2 and I let him play XBox1 with his friends it helps him relaxe from episodes. I have Cerebellar Ataxia even though my V.N.S helps, I would still stand at the front door until I'm ready to leave. You truly sound like me and my son, that's how you can tell you have it Ataxia gives all the same actions or similar.

Ben_EA2 profile image
Ben_EA2 in reply to Julia808

I'm bit like that. Like if I know I am going out in the evening. I get anxious all day. I can always tell as I have a weak bladder. Then whole day I feel like I am waiting for it to happen and dreading it. I go out, it happens, then when it passes I feel better knowing it has happened because it doesn't usually happen again, when I am out. If that makes sense. So I can relax more.

Ben_EA2 profile image
Ben_EA2 in reply to Julia808

Also if I wanted to go somewhere I used to keep delaying it. It is even worse when I can feel that something might happen. It is hard to understand for anyone who hasn't got ataxia.

Julia808 profile image
Julia808

You should get a Vegus Nerve Stimulator (V.N.S) you could watch videos about it on YouTube, it would truly help you it helped me your Nuerolgist can send you to a surgeon to get one.

Ben_EA2 profile image
Ben_EA2 in reply to Julia808

never heard of that before but I read and it says its for seizures? Not sure how that can help. Sometimes I feel like I am a burden. I know that other people have it worse than me, but can't help how it makes me feel inside, knowing I have something I can't control.

ConfusedAtaxian profile image
ConfusedAtaxian

Firstly, I would get some cards from Ataxia U K and always carry one with you. They explain everything. Secondly, if you’re going somewhere you want to go, look on it as a treat and you will feel more excited and less anxious maybe. Thirdly, keep sharing your fears with us. Know you are not alone..... 🤗

wobblybee profile image
wobblybee

🤔 This question is to everyone. What are ‘episodes’. What exactly happens🤔 Are they episodes of Deja Vu, seizures, or fatigue and episodically worsening of symptoms 🤔

Ben_EA2 profile image
Ben_EA2 in reply to wobblybee

Well the same happens as any other form of ataxia. In my experience I can feel when an episode is going to come on. Hard to explain. Episodes vary in duration and severity but when it happens I get vertigo, i can't walk properly and my speech slurs. speech used to be bad but nowadays it is mostly my walking that is affected. Hoping my acetazolamide helps with that.

On more major episodes I have had trouble swallowing in the past and I have also found that when I am ill my condition gets worse. Fever is a trigger and I have had major episodes when having the flu, even though I take the acetazolamide. So nowadays I get the flu jab, which i recommend for anyone with episodic ataxia.

Ben_EA2 profile image
Ben_EA2 in reply to wobblybee

Oh and forgot to say. Episodes do affect my eye sight also. Outsides episodes too although worse when I am having an episode

wobblybee profile image
wobblybee in reply to Ben_EA2

🙂 Ben, d’you mean double vision or Nystagmus gets worse, or do your eyes get blurry 🤔

Ben_EA2 profile image
Ben_EA2 in reply to wobblybee

Outside episodes my nystagmus is there all the time. You know like if I move my eyes without moving my head I will get double vision. I've learnt to live with it.

When I have the episodes I can get some blurriness and my double vision is more shaky if that makes sense. I wear glasses but that is for an unrelated eye condition.

wobblybee profile image
wobblybee in reply to Ben_EA2

🙂 Over the years, I’ve tried ever increasing strengths of prisms, Occlusal Contact Lens, Botox, and finally Squint (Strabismus) Surgery. The surgery finally made a terrific difference, I had this done at my local NHS Hospital Eye Dept. If you try prisms and they don’t help (my balance was actually worse because I felt Nystagmus caused my eyes to ‘bounce’ against the prism), I can recommend trying an Occlusal Contact Lens. This gives the same effect as wearing a patch over the worst eye, and can cut out double vision.

Ben_EA2 profile image
Ben_EA2 in reply to wobblybee

I tried prisms at one point but wasn't too impressed. What is strabismus surgery? How does it help?

wobblybee profile image
wobblybee in reply to Ben_EA2

🙂 For best explanation, google Strabismus Surgery. But basically what it’s commonly referred to is Squint Surgery. The surgeon tightens the eye muscle, in my case it was my left eye. This eye has always been my weakest, and for me it has made a huge difference. Sometimes, Botox makes a big difference to double vision, it could be worthwhile asking your Optician ( if you have one) to refer you to a hospital Eye Dept. If not, ask your GP for a referral 🙂

littlelegs914 profile image
littlelegs914

I have ea2 with cerebellar ataxia and hemiphlegic migraine .im 47 I’ve had this from birth .symptoms have come and gone during my life.now I’m a bit older the ataxia has really kicked in but I has never stopped me being me. I adjust to the symptoms as they come.,

Ben_EA2 profile image
Ben_EA2 in reply to littlelegs914

How does it affect you having both? How often do you have episodes?

littlelegs914 profile image
littlelegs914

The day before the migraine comes my balance and coordination is spot on everything is easy not hard no stiffnes.the hemiphlegic migraine does control my life because that does come on anytime so I have always someone with me when I’m out. I don’t have episodes now it’s with me 24/7.. my son who is 21 has them most days yet my daughters who is 18 hardly has any . Out of my 4 children the youngest 2 inherited the gene.we all had gene testing many years ago.

wobblybee profile image
wobblybee in reply to littlelegs914

🙂 I used to have Deja Vu, and initially I was diagnosed with Epilepsy because I’d had a seizure in my sleep. More recently the diagnosis was changed to Recessive Episodic Ataxia after DNA testing, and the Deja Vu is thought to have been silent Migraine.

Ben_EA2 profile image
Ben_EA2 in reply to wobblybee

They thought I might have had epilepsy initially too. I was on epilim for a while.

hsilverman1 profile image
hsilverman1

I am 66, and have had EA 2/SCA 6 plus Hemiplegic Migraine. It was autosomal dominant.. I was a special education teacher, but had to retire @ 58 due to falling for the class.

Now I use a u-walker and cane. I have traveled a lot in the past few years. My wife drives, so I am very lucky. I try to keep busy. Grandkids help.

I have had strabismus surgery, very helpful.

Keep a good attitude. Lose people who have no compassion for you.

Take care.

Always,

HS

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