Ataxia with involuntary eye movements.

[Regina75]

I have involuntary eye movements, have tried wearing glasses and it helps a bit especially when im reading i feel i can see more closely but doesn't help as much. Does anyone else experience this? If so, any advice?

[Ginger1]

It could be nystagmus which I have. Look it up. Speak with your neurologist too.

[Regina75 in reply to Ginger1]

I have already seen and spoken to her. She said Gabopentin tablets can help. But unfortunately it hasn't so far.

[Ginger1 in reply to Regina75]

I've taken Gabapentin for years (about 10 years). It made me very sickly at 1st but i persevered & am ok now. Keep on with it.

It doesn't suit everyone though & perhaps your neurologist can prescribe something else if you don't feel any benefit.

I've researched Gabapentin & it's used for many issues.

Persevere. You may eventually find it helps?

Take a look at RNIB too

[Scrunch1974]

Hi

I also have nystagmus but don't really know what can be done for it.the Orthoptist just said if it becomes troublesome go see your doctor.

[wobblybee]

🙂 There are actually several medications that could be prescribed to help alleviate Nystagmus but it's a case of 'trial and error' for most of us. Not everyone has the same level of Nystagmus and not everyone will feel any benefit from medication. I have Nystagmus but have never tried medication.

In my experience, eye problems (double vision & Nystagmus ) combined with balance issues have been very disorientating, and difficult to treat 😏 I was surprised to find that not everyone coping with ataxia experiences eye problems 🙂xB

[SamGH in reply to wobblybee]

Hi wobblybee. You are the 1st other ataxia sufferer I know of to mention double vision. This has ruined life above all other symptoms for me. I don't have nystagmus. Double vision means I can't drive, read for pleasure, write, cycle

[wobblybee in reply to SamGH]

😏 It was one of my earliest symptoms. At the time, I was convinced it was a 'side effect' of carbamazaphine retard, an Epilepsy drug ( I was misdiagnosed).

Ask your Optician to refer you to your nearest hospital Eye clinic. These days, it's possible to have treatment, as well of course the usual addition of prisms to glasses. A lot can depend on the severity of the problem but it's always worth pursuing 🙂

A Botox injection into the eye muscle can be very effective, and Squint Surgery is also an option that can give good results. I've had both, double vision is much improved without the need for a high grade prism, which I can confirm does not work well with vestibular issues.

Because of ongoing health issues, I've had renewable 3yr licences for several years.

Definitely ask for a referral, wearing glasses with a prism could get you back on the road 🤔 xB

[SamGH in reply to wobblybee]

Cheers. I am seeing my eye hospital already. Squint surgery didn't work for me and my prisms do help but it still fluctuates. Screen work ( the only thing left I can do) leaves me really fatigued.

Any other tips?

[wobblybee in reply to SamGH]

I also tried an occlusal, and semi occlusal contact lens in my worst eye. Total blackout made me a bit panicky but the partial occlusal worked well. Unfortunately arthritis has put a stop to contact lenses 😏

I've been 'signed off' from my NeuroOpthalmologist and the hospital Eye team and am now back with an Optician. It's taken a good while for my eye to settle after surgery, and I'm aware the last prescription needs 'tweaking'.

The Optician has suggested I try an Opaque lens in my glasses ( for the left eye), without a prism. If I'm not satisfied with the effect it gives, she'll put a prism back in.

You can view Opaque lenses by googling. In the past I've had a temporary plastic adhesive prism on my glasses, not a good look alongside being wobbly and slurry 😉

But, at this stage I can only but try it 😉xB

BTW, if you shut one eye does your double vision disappear🤔

[SamGH in reply to wobblybee]

I've got the stick on prism at the moment! Closing one eye dosnt fully stop the double vision. The eye hospital say I lye about this!

[wobblybee in reply to SamGH]

🙄 It must be so frustrating. The problem must be much more difficult to treat when both eyes are affected 😏 Stick to your guns, don't let them try to overrule you. You're the one experiencing double vision. Who would want to say they're seeing double just for the fun of it😏xB

[SamGH in reply to wobblybee]

Me apparently! Thanks