seizures

[Guardsman68]

Hello friends I hope you are all doing as well as can be.

I have a question regarding seizures and the type of seizures I’m experiencing. I’m having ballistic type seizures which cause severe jerking movements uncontrollable thrashing of left arm feeling sick burning up and severe weakness they are absolutely brutal. I was just wondering if anyone else experience these type of episodes. Also does everyone with cerebella ataxia have nystagmus of any type.

Thank you

[penelope2]

Oh you poor thing, what a lot to put up with.

You really need to question this further with your doctors and neurologists. Keep on intil you are satisfied with the answers.

Keep a diary of symptoms and to see if there any connections. Are you under UCLH or Sheffield? If not then get a referral, because these are the specialists and will be able to help.

I have slight nystagmus one eye only but not noticeable and not troublesome. Lots of people with CA have eyesight problems.

Good luck.

[Guardsman68 in reply to penelope2]

Bless you Penelope2

I was having a battle with my neurologist every time I seen him but a compromise was agreed and we are moving in the direction I like. I’m being referred to Sheffield which is a good step. The seizures are something he’s never seen before as my wife has had my son video them so he could see them. I’m hoping that once I’m at Sheffield things might change I’m not sure how or what I’m actually expecting but some answers would be nice

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[PatsyIpswich]

not personally but can be symptom.

[paul456]

Hi mate

Sorry your going through a bad time the nearest I can get to that is my episodic ataxia it has similar symptoms but maybe not as bad, I think EA and SCA6 share the same gene so in a way I have two sorts of ataxia giving me a good kicking at the same time 🤪. I’m off to London tomorrow to see my neurologist then genetics on Friday so hope to get a few of my two million questions answered so will let you know how I get on.

It’s my first trip to London using a rollator so will probably end up in some hospital 😀

You take care my friend.

Who cares wins.

[Guardsman68 in reply to paul456]

Hi Paul

Thanks mate, everything has started to squeeze a bit more at moment from seizures to speech getting very slurred and lack of energy caused by pain. But I’m getting after it every day by I’m just so exhausted pal🥴.

I really hope you get some questions answered tomorrow as it’s important that we know what is going on I just hope you get there in one piece with the rollator 🤪you’ll be fine I’m sure just remember to be selective with whoever you barge out the way 😂

Good luck my friend keep us posted

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[ninotchka]

I have postural tremors that cause me to be jerky/spastic, but nothing as bad as you describe. And yes, I have not only nystagmus, but blurry eyes.

[phyllis2009]

hi guardsman I have idiopathic cerebellar syndrome. 11 years now. Also nystagmus in both eyes. Horizontally and vertically. It was horrible and can only describe it as the feeling you get on a fairground ride that never stops! However 3 years ago I volunteered for a trial at moorfields eye hospital in London and had magnetic implants in both eyes. I was only their 2nd victim!! The difference for me was huge and I can now walk, albeit like I’m drunk, without the world rushing by at 100 miles an hour. I believe this procedure is now available on the NHS. Worth checking out. It’s painless. The double vision was a big problem until the eyes adjusted to the magnets and slowed down the eyes and it doesn’t affect your visual acuity.

[ddmagee1]

Just this last year, I got double vision - horizontally, several times! On top of balance problems, it was unnerving! I have Cerebellar Ataxia! I am also being tested for Myasthenia Gravis!