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 😊.
Hi You are so right Doctors don’t seem to understand about Ataxia neither do many people it’s one of those hidden diseases and because you look ok people do not understand how difficult our lives are. I wish it was as more talked about as some of the other neurological diseases are then perhaps we might get more help.
Anyway we will just keep plodding on and not give up .
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.
Hi Ginger 1, Thank you for your reply you seem to understand my problem which is good as no one else does, I go to Pilates every week and have a chair to hold onto for the standing up part of the class this has got very difficult over the last few months but I am persevering with it. The second part of the class is down on the floor which is a lot easier but still requires lot of work effort as it Is quite exhausting trying to stop myself from falling over even on the floor. But as you said we need to keep our core strength and try very hard not to give up. I also walk when I can get someone to come with me but that is very difficult as my vision is impaired due to my involuntary eye movement when I move no one seems to help us I have tried all the medication that my Neurologist has prescribed but non of it works so I just have to carry on until my brain gives up
🙂 For anybody who uses Facebook…there is this specific group. It’s a private group.
RFC-1 Canvas International Support Group
Hi, I have CANVAS and am interested in the International support group you mention. I am not on face book though. is there any other way I can get in touch with the group?
Totally get where you're coming from - quite a bit ago, I used to go to a class which did exercise on the floor & I couldn't keep up - I just got into an exercise (cause it took me ages), when the trainer moved onto another - I found it really frustrating but funny 🤭🙄.
When I could walk, I also used to go swimming, which I found really good, as it's weight bearing.
Also, getting up off the floor - I used to get onto my knees with my hands on the floor in front (like you're going to do the cat pose) & then I used to straighten my legs whilst walking my hands backwards towards them (I hope this makes sense). It saved me getting up too quickly.
If you're finding it difficult to do the standing exercises, adapt them for sitting. I can't stand, so I do.
I remembered afterwards that I tried 'The Bates Method' of eye exercises, which may be useful for you.
It's really frustrating isn't it? We have to keep going though & keep smiling (I often think, things could be a lot worse) 😢
Have a look at a lady with MS on UTube - I think she's called Terry Wharles - it's quite interesting.
yes, this describes my symptoms. Some days are better than others. Medication for other issues can also make it worse. Don’t fight it. Relax and adapt the best you can
What I was trying to suggest was that some nystagmus can be caused by BPPV, it can be helped using the Epley manoeuvre. I have many of the symptoms you describe with ataxia as well. If I have BPPV, which can come and go, it is all much worse, much worse. I also have multiple eye problems. See a GP and ask if it might be BPPV because that can be alleviated. It is quite common in older people. Also, vitamin D might help a little, some research showed older folk falling more in the winter- when there is less sunshine and this is linked in some cases to BPPV. Google it?
I also experience BPPV…and Downbeat Nystagmus…I’m diagnosed with Idiopathic Cerebellar Ataxia despite extensive testing.
Since 2011..I’ve had numerous Epley Manoeuvres, and generally felt ok afterwards, able to get up and walk away.
Today, on ENT advice I had it done by a GP.
I’ve never felt so awful afterwards, totally disorientated - dizzy - nauseous …and worst of all I couldn’t walk straight…my legs were crossing. Several hours later I still feel worse balance wise and dizzy when moving my head ….and my ears are ringing.
I'm very sorry to hear that! I was always told you might get worse before you get better. The worst one was when the last part was not done, 'it wasn't deemed necessary', well, it really is for me. I should do one myself today but do not have the courage, knowing it might go away after a week or so anyway. I carefully follow the youtube videos from reputable sources. Often it improves straight away. I hope you improve rapidly. I'd sleep as upright as possible tonight until there is improvement otherwise the falling sensations might be too much. Lots of my contemporaries who do not have Ataxia have BPPV.
Hi. I also have the double recessive gene AAGGG. I have been warned about this by my neurologist, but thankfully I don’t currently suffer from this.
I know it doesn’t help, but I wish you all the best.
Try to keep going to exercise class even if you are slow and behind. Exercise class is a good social outing for many people who fear to go out on there own.
hi, I was like this. I was put on Flunarizin-CT 5mg. What a difference it makes.
I was offered Flunarizine..but warned about weight gain and depression…so I was dissuaded. I often wonder if it would have helped with dizziness.
Hi, it was a game changer for me. I was stuck in a chair before using it. Balance was gone, just turning my head wile seated was terrible.
Hi i cant swollow but there is nothing wrong with my thought it just simple antakia leave it at that its a rotten handicap xx
Hi. Yes look up Terry Whales who has MS and turned this condition around with diet Was at first referred to the ENT department as I had tinnitus and this was thought to be causing my balance issues. Over 2 years wasted as could not find the problem. But I did see a balance therapist who was helpful. Lots of eye exercises. That was 10 years ago and I still do them once or twice a week. The exercises did not help the vertigo though and for a while this was worse than the balance and walking.
Now tinnitus has subsided, the tremors that started have stopped. Ataxia symptoms have stabilised. Last MRI showed an improvement in the cerebellum, just waiting and hoping for balance and coordination to improve. My age is against me, I'm in late 60s. Had a problem with gluten all my life and didn't know it.
At one stage was told it was CANVAS. I didn't think so as improvements in the Ataxia was so positive on the Gluten free diet.
It frustrates me too that so much publicity is given to Parkinsons, MS and MND. It feels like we are the poor cousins.
It is possible that hereditary ataxias will respond positively to a gluten free diet. No medication needed you just need to do it 100%. Do research, lots of reading and try it. You have nothing to lose.
Good luck.
Focussing and vision-short episodes of blurred vision
Experience of Ataxia post
Late on set Cerabeller Ataxia.
