Does anyone have any tips to help combat nystagmus - constant uncontrolled movement of the eyes (up and down or side to side) which first led me to be diagnosed with SCA6. I have a few tricks - like blinking fast and even shaking my head a little which sort of resets the eyes.
Any other ideas?

Sit with your finger in front of you and focus on it and you can do objects that are at different distances.

Sit with your head still and look to right and the left and into each corner.

If you have a computer and you can find something that runs across the screen repeatedly and hold your head still and follow it

Bounce a ball and follow it

Trace your name, alphabet, figure eight while holding your head still.

On a piece of paper make a square and put a circle about a 1/2" next to it and with your eyes put the circle inside the square. (Takes practice and sometimes your can do it and sometimes not).

I got these from my occupational therapist. If found out the SCA was affecting my eyes and these are some of the exercises she gave me.


Many thanks for that. I will try these exercises.

i’m just starting 4-aminopyridine prescribed by dr perlman at UCLA Ataxia center. I’m some better but can’t be certain yet–its early. My neuro-opthamalogist put a tempory double vision prism in my glasses on one side. This helps reading at a distance. I have a blurred eye on other side (cataraks). Get your eyes checked by good docs. They may tell you something you don’t know. Also L’thianine, a nutritional supplement also helped me. 200 mg

:blush:you might find medication to help with Nystagmus on
www.ataxia.org On the home page scroll down to FACT SHEETS.
The direct link failed😏
I have slight downbeat Nystagmus but have never tried any medication.

I’ve tried various prisms, and Occlusal contact lenses to counteract double vision.
Also Botox, and surgery. Botox is known to be successful for some people, so I think
it was worth trying🙂 Unfortunately, my eye muscle required surgery to tighten it.
That made a big improvement, although it didn’t banish double vision entirely.
But, my glasses now have a much reduced prism🙂xB

They just started my son on 4 aminopyridine. He has SCA 27 and gaze evoked Nystagmus. Slowly increasing his dose currently. First week was 2.5 mg once a day. Starts morning and night soon.

I have lateral Nystagmus only [thank goodness] so I can still drive a car safely. However, it does affect my depth perception so going down stairs [not so much going up] is somewhat difficult. I try to avoid stairs [down] as much as possible unless I have a hand rail to hold on to for balance.

Going down the stairs is also a bigger problem for me; not so much going up- similar to yours.

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As I mentioned I have similar problem as you regarding stairs. I wanted to let you know that if I focus on feet and legs (raise yourself on your toes etc), I think I can go down the stairs easier.