Consequent with the progress of my S/c ataxia I have experienced increased problems with sleeping. I put my book down and switch off the light at around midnight but very often wake around three to four hours later. I normally abandon attempts to get back to sleep and get out of bed then.

I haven't questioned my specialist over the possibility of it being connected with the condition but does anyone else experience this problem?

Hi Colin,
Initially I had sleeplessness for the pain in my lower back and hip was making sleep impossible. My mind was restless as the outcome of Ataxia was terrifying and depressing. Now I have got used to,the problem and decided to fight and stay strong. I suffer from Cerebellar Ataxia. I manage to,sleep now for the mind has accepted the problem. Meditation is another way to ease the mind. If appealing you can try to catch some sleep!

Yes, I have encountered similar problems. Like you, I often wake up at 2 in the morning and feel wide awake. I also have very lucid dreams on most nights with dreams so vivid i feel like I am half awake and half asleep. It is not a restful sleep to say the least. Happily, since I started the gluten free diet 3 months ago my mind is not as active during sleep and I am sleeping deeper in general. I had read on one medical website, forget which, that sleep problems are common for those with ataxia. Best of luck to you.

I have sleeping isseus too, axactly the same as mentioned here above: waking up at 2 or 3 in the night and unable to get back assleep. Initialy i thought it was The obvious worries one has when in this mess but than i found a patern; when waking up i could be dozy and fall asleep again unless i’d be realy agitated for whatever reason. Then my hart would start pounding and in effect all my scences would go to fully aware. I figure it’s a thin line between a dozy wake and a full awareness wake, it takes just a second to spring from one state to the other. But ones your in the aware state it takes loads of time to get back asleep!
The vivid dreams bit is a feast of recognition aswell! I only had these when i was young, till recently…
(exuse my spelling, the spell check doesn’t seem to work)

Very much so. I find using a safe over the counter sleep aid helpful (ZZZquil)

Thanks butterflyaway, I'll try a non-prescription drug. There's a brand widely advertised called Nytol which is probably worth a punt. Could you tell me if the medication affects your ataxia at all. I do have balance problems and don't look forward to getting out of bed to then go reeling across the bedroom. The obvious solution is of course to try it. Thanks. My thanks also to Hans, Nan and Buffalo Bill ..... their replies made me feel less isolated

butterflyflyaway said:

Very much so. I find using a safe over the counter sleep aid helpful (ZZZquil)

My sleep has been wonderfull, till i read the reply by Buffalo Bil on September 29 in this thread. Since then, i wake up earlier an i am in half-sleep for some time (hope this will change again back to the former state). In my experience - i have had plenty of sleep problems in my younger age - there can be several components contributing to the sleep problem.

- Suggestion - I suppose that i will not be able to sleep well and this happens - self fullfilling prophecy.

- When your sleep is disturbed in one night, it can happen that your sleep will be disturbed in the next and in the following nights in the same way, on the same time. - Body/Mind are learning the wrong patterns.

- Better to try to go on with sleeping (perhaps after a short break, going to toilet, drinking some water, breathing fresh air..) and not stand up, if it would be much to early to do this.

- If i would not be able to sleep in one night, i have to sleep in the next night. If this would not be possible - a psychiatrist told to me- it would be recommendable for me to take sleeping aids (a pill), because my body needs the sleep..

There exists a theory that the sleep before midnight would count double. I could not verify that because i am hardly able to change my attitudes and go to bed early.


Hi Colin

The same thing happens to me. When I go to sleep, my eyes flick open a few hrs later. I read a few websites on insomnia, I used to sit up and look at the clock, don't do this. When you wake, try to relax and take deep breaths. Works for me. Now I sleep to six.