Does anyone have vision problems like movement of everything when you are walking and slow focusing? I have something called CANVAS Ataxia

[boxerattims]

I have hereditary Ataxia called CANVAS and have problems with vision especially when I am moving also slow focusing apart from having to walk with 2 walking poles. Does anyone have vision problems and can anything be done to help?

[edfosho]

I have diplopia (double vision). I also found out earlier this year I have an autosomal recessive (inherited) ataxia too, a SYNE1-related spinocerebellar ataxia. I'm 30 years old and the double vision issue was first identified when I was 23, and slowly has got worse over the years. I wear glasses with prism lenses. If you haven't already, ask your GP to go to your local eye clinic.

[wobblybee]

I was tested for CANVAS because of my symptoms, but the message from my Neurologist wasn’t reassuring..she said you appear to be negative..I’ve had Prisms, Botox and finally Strabismus Surgery for double vision...

My vision/focus moves up and down when I walk (Oscillopsia), this is separate from the Downbeat Nystagmus which I also have.

So far as I know, there isn’t any cure for Oscillopsia, or Nystagmus, although my NeuroOpthamoliogist mentioned this option..

A simple optical device (spectacles plus contact lens) enabling viewing of the real world with either partial or almost-complete retinal image stabilisation has been tested in patients with oscillopsia caused by nystagmus. The device gave a useful improvement in vision in two of 14 patients. Reasons for success and failure were clear and are discussed. Obvious contraindications include severe optic atrophy, titubation and dementia. Net benefit is also unlikely if there is a good null point or area to the nystagmus, or if acuity (corrected but unstabilized) is 6/9 or better. It is not suitable for the treatment of oscillopsia caused by failure of the vestibulo-ocular reflex.

Wear the right contacts or glasses to improve vision. It won't cure nystagmus, but it can help with other eye problems that can make it worse.

Nystagmus

Eye muscle surgery may be an option. The goal is to help with the head tilt that often comes with nystagmus. Sometimes surgery improves vision, too.

Some drugs may ease symptoms in adults but not children. These include the anti-seizure medicine gabapentin (Neurontin), the muscle relaxant baclofen (Lioresal), and onabotulinumtoxina (Botox).

Copied from webmd.com

[BlanketTime1]

i have multiple vision issues. within the last 2 years, one of my eyes decided it doesn't want to focus. i have to shut the other eye or cover it to make my eyes work together again. it happens dozens of times a day.

i also have an issue if i try to focus on something on the floor while moving. i notice it mostly when hoovering as all of the sudden, my vision goes jagged and wobbly.

[phyllis2009]

Nystagmus goes hand in hand with ataxia it seems. 2 years ago I took part in a trial at moorfields eye hospital in London to have magnets implanted in both eyes. I had nystagmus horizontally and vertically. I was one of only 4 patients in the trial. The difference it has made for me is amazing. I can actually go to a supermarket and not have the effect of everything whizzing past me. Hoping this procedure can be available on the nhs eventually

[EireAtaxic]

My ataxia is as a result of brain surgery, 2009. I had really bad double vision. We I would watch football there would be twice the amount on the pitch than there should be. An optician sorted me out with glasses to help. I still have a thing where when I turn my head it takes a second to adjust. I do find high levels of visual stimulus very tired, things changing very quickly.

[wozzer45]

Hi,I also have CANVAS, finally got a genetic diagnosis in February after 7 years!

I had noticed problems focusing in particular while walking and only drive locally but this summer it went haywire. I felt so dizzy and disoriented that I couldn't go out by myself, was considering a walker, using a stick for last few years. My 86 year old mum was helping me out for a walk. Anyhow my cousin who's a physio called me and we chatted about my condition. He recommended a vestibular physio. I've had 3 sessions and do exercises for eye movement and balance every day. I can see a huge improvement already, am now able to get out for walks for about 30-40 mins. I can see and feel big improvement in my nystagmus. It's great to be able to do something about a symptom. Give it a try! But find vestibular specialist, have had physiotherapy few times before and no comparison.

Good luck,

Liz

[pinjem in reply to wozzer45]

That is lovely to hear you had a benefit, makes me smile when things are improved for people here. I was given lots of vestibular exercises from when we didn't know I had ataxia and it made small improvements but the exercises mentally wore me out, so much concentration I was overwhelmed so things became worse. Perhaps it is worth doing 5 mins seated exercise a day. I'll see if I can find out more.

[Oroklinibabe]

Hi I was also diagnosed with CANVAS about 12 ago. I have a vestibular problem, it’s part of CANVAS . U learn to deal with it and don’t do things that make it worse

[1940girl]

Hi, I have CANVAS, was diagnosed about 2 yrs ago after having genetic testing, the problem I have with my eyes , is that horizontal lines look like the are moving/slightly vibrating, I don't if anyone else has experienced this.