Ataxia UK


Does anyone suffer from insomnia, is it another symptom of Ataxia. (Only just been diagnosed) Crazy, during the daytime exhaustion suddenly overwhelms me but then when I go to bed at night I toss and turn for a couple of hours, usually experiencing cramping pains until I finally give in and get up to make a warm drink. Returning to bed at about 4 to try to get at least 3 hours sleep. I take nortriptyline but it doesn't seem to work anymore. Yet another thing to get used to.

10 Replies

Interesting what you say Paullymaie, my wife is taking longer to get over to sleep these days. I will discuss it with her. As I am her full time carer now I get up early (4.30 am this morning) to do jobs that need to take a while without interruption. Seldom now can I get up without her knowing so you may have something. David


afraid so i get a couple then awake rest of night drives me insain good luck


Hi, I have all the same problems as you, and 2 weeks ago my husband was listening to a sleep expert on the radio who said that you shouldn't take naps of more than 20 minutes as that will perk you up but any longer you go into a deeper sleep and then can't sleep at night because it's like giving yourself jetlag every day. So I have been trying this - ie just having a 20 min nap sometimes 2/3 times a day and have been sleeping much better at night. Over Christmas I slept for 1.5 hours one day and I couldn't sleep that night and felt extra exhausted again the next day. I have also got into the habit of raising my arms above my head 20x to improve my circulation and this stops my hands going dead at night and stretching the backs of my legs each 20x to stop night time aches. Hope this helps - let us know


I think it is par for the course, I can't even remember the last time I slept for more than 20 minutes at a time. I tend to try and do something else so quite often I am up and on the computer when everyone is asleep. My GP did relent recently to giving me some mild sleeping tablets, but they didn't work very well. What does help me is to focas on something you can do like a game or writing, which I find hard. The worse thing you can do is fret about not sleeping. Just set your self some tasks that you don't think you can do. This time last year I couldn't even write my name and now I can and I can touch type again. The games help or at least the hidden object games I play and you only need to use your mouse but they keep your brain working. Any exercise you can do also does help. It doesn't make you sleep but it fills the time until you think you are able.


yes its the same as me I am awake till about 5am then I fell asleep then I sleep till about 12 mid day I get really sore in my legs I take 2x500mg paracetamol and 1 or 2 30mg dihiyrocodine tablets they do help. I am awake now it is nearly 2am


For me, the less than eight hours of sleep that I get, the worse that my balance is. So, I do everything that I can to make sure that I get to sleep when I should. I have found that taking Benadryl antihistamine, or Melatonin, or both, often helps me to get sleepy.


I sympathize with your problem. I suffer leg cramps that wake me up also. I take baclofen muscle relaxer for that and try to stay hydrated and eat bananas. I'm 55 and have been suffering with ataxia since head injury almost 2 years now. I have also developed BPH which means I have to pee many times at night. I've been taking pygeum for that and it seems to be improving. My Dr. Provides me with sleeping pills but I'm afraid when I use them I won't be able to make it to the bathroom in time. I use a walker. I can manage up to 2 hrs sleep at a time, so I take 2 naps during the day when I can. Exercise is also very helpful in many ways. During the nigh I spend quiet time on the computer to help tire my eyes.


Very much the same for me. I think it might be because I cannot let go of my thoughts.

The days when I feel good it's usually not a problem. But during periods where I have a lot on my mind I won't sleep until the morning.

However when I approach bedtime I dim all lights, go to the toilet squeeze out some pee relax for a while and then going to the toilet again so I won't have to worry about having to go in a few hours.

I also limit my fluid intake during the evening.

Nevertheless I ALWAYS use foam earplugs the last thing I need is disturbing surrounding sounds.

Prior to important events I take imovane to fall easier asleep and it helps but I don't want addiction to pharmaceuticals so I limit my use.

Hope there are some tips u can use. Good luck :)


I really sympathise. It's horrible. I have had cerebellar ataxia for many years (blood tests confirmed genetic). I'm 46 years young. Eat bananas & drink tonic water (its the quinine apparently) as well as eating turmeric. All good for cramp. Exercising regularly really helps me. I don't tend to sleep during day. Do what I can (ie jobs around house) using one of my trusty walkers. Have 2. Then rest.

Takes me a long time to get to sleep. When awake need toilet. When I eventually get off to sleep, I have about 11/12 hours otherwise I can't manage as balance is terrible. Torticollis along with a bad back doesn't do me any favours either!

Exercise definitely helps me calm down & I'm convinced overall I'd be far worse if I didn't. Good luck. Try turmeric. Really works for my cramps & not a drug either!


I took part in a recent Turmeric trial🙂 'Trust me, I'm a Doctor'.

Unfortunately😑 I was given powder, not capsules, and had to cook with it. Not one of my strong points😑

However, combining Turmeric with food was found to give the most benefits👍 xB


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