my condition gets worse every week when I get out of bed , stand up after sitting down my problem starts, with constant vertigo my vision is terrible I cannot see clearly and if I move my head I nearly fall down, cannot drive or go anywhere on my own for fear of falling.
My opthamologist said my eyes are good it’s the Ataxia that’s causing my problems.
Does anyone else have these problems?
It might be or it might be something else or it could be both. Tell your GP and your consultant.
I have CANVAS and get frustrated at how little help we get from GPs and consultants. Physiotherapists seem to have more understanding of our problems like ataxia and nystagmus. There are neurophysiotherapists who can help and I have been recommended to do the Cawthorne-Cooksey exercises for vestibular problems like nystagmus. You can find them online on the internet. I have joined a Neurotherapy Centre where I will have an assessment and be able to join Balance and exercise classes. I walk outside with a walker when possible but have a wheelchair too. My most recent problem is headache which starts when I wake up and may improve during the day. It is good to communicate with other CANVAS sufferers on Health Unlocked because I haven’t met anyone else with this diagnosis and the Neurotherapy Centre and local Neuromuscular Centre have no members with this, although they do know about ataxia and nystagmus. I hope you get some help and advice.
I have specific symptoms ..but tested negative for CANVAS…and I don’t have the chronic cough linked to the diagnosis.
I’ve often seen CANVAS mentioned on Facebook Ataxia Support Groups.
Hi my friend
I have exactly the same symptoms bad and double vision and every time I turn around in bed or sit-up turn my head to quickly I spin round so try and do things slowly. GP’s know very little or nothing about anything to do with Ataxia, my son in law is a GP and his two brothers and sister in law are all doctors but any good to me……..NO.
Take it easy my friend and stay safe 😊.
Hello there boxerrattims
I was diagnosed with cerebellar ataxia many years ago & have nystagmus & many other issues.
Sympathise lots with you. It's awful but the only advice I can give which helps me, is to exercise seated every day (there is plenty of chair exercises on line/UTube) but don't do too much. The stronger we are, the better we feel & it may help cope with issues.
Also look at eye exercises for nystagmus on UTube - there's lots. I close 1 eye, so I can focus on something. Don't get up too quickly. Allow yourself to get your equilibrium.
Good luck & keep your chin up. Try and focus on what you can do, as opposed to what you can't.
🙂 For anybody who uses Facebook…there is this specific group. It’s a private group.
RFC-1 Canvas International Support Group
Ataxia and blurry vision 
Ataxia
Ataxia and eyesight
CANVAS
