Nystagmus worse after vestibular physio?

[EleanorS]

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

[kathie29]

I find everything worse after any exercise.

[Regina75 in reply to kathie29]

I have this problem too, does anything help?

[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 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 in reply to EleanorS]

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

[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