Nystagmus worse after vestibular physio? - Ataxia UK

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Nystagmus worse after vestibular physio?

EleanorS profile image
6 Replies

My nystagmus is worse after vestibular physio. I can’t find anything about this online. Has anyone got any thoughts on this?

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EleanorS profile image
EleanorS
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6 Replies
kathie29 profile image
kathie29

I find everything worse after any exercise.

Regina75 profile image
Regina75 in reply to kathie29

I have this problem too, does anything help?

EleanorS profile image
EleanorS in reply to Regina75

I’ve been told to try special contact lenses that only a neuro ophthalmologist can prescribe, the theory is that the weight of the contact lenses might slow the nystagmus. but I don’t know if it works or not.

Thanks for replying, I’m not sure if you’re saying your nystagmus gets worse after vestibular physio too

Or you have nystagmus too

Regina75 profile image
Regina75 in reply to EleanorS

Yes I have nystagmus and also find that after a bit of exercise it gets worse too which is so annoying I try to go and live a positive life but the nystagmus follows me every where I go :(

neta profile image
neta in reply to EleanorS

How does the nystagmus manifest itself and what kind of nystagmus do you have?

EleanorS profile image
EleanorS in reply to neta

The NHS said I have both horizontal and vertical nystagmus, private medicine disagrees and just says vertical downbeat. The nystagmus is said to cause Oscillopsia. A neuro physio has said I have one eye worse than the other. I apparently have unusual eye movements including the rotating aspect.

I have been managing just fine for 6 years.

Vestibular physio seems to have worsened it but I can’t say for sure yet:

Eg now, If just sitting eg in the living room there comes a point when I just want to close my eyes.

It affects how I try to see products on shelves in shops.

When I am looking at a narrow screen such as a phone it reduces by about 90 percent. If I’m reading from wider devices or books it comes back.

The biggest problems I find are not the disabilities themselves, although said to be graded as ‘very challenging’ by neurologists.

I find physical and mental fatigue to be pretty much coming out on top all of the time as regards the biggest challenges

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