Hi everyone hope you’re all getting by these unknown times. Another question for you, I don’t think this is ataxia related but any help Would be greatly appreciated. I used to be able to sleep anytime anywhere but over the past couple of months I have real trouble sleeping. I itch everywhere on my body and can’t seem to get comfortable. My best sleep is after about 5am but eve then it’s not good. I’ve tried listening different sounds but they don’t help much. I can’t remember the last time I had a continuous 8 hours sleep. But even though I don’t sleep well I don’t seem tired when I wake up just tired doing tasks through the day.
Louise
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weegiz12345
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Hi Louise, I have trouble sleeping also, exactly like you do! I'd love to get 8 hours of interrupted sleep. I also itch & can't seem to get comfortble in bed. Sometimes I sleep in my reclining Lazyboy chair, as I do a bit better. For me, this has been going on for years. Sometimes I reach a point where I want to contact my doctor and get a sleeping aide, but I never do. I don't like to take any drugs, as if there's any side effects they usually find me! I have no idea why this happens, as before ataxia I sleep really well. I think it's just another hazard of ataxia! Stay safe...,;o)
Hi Cindy hope you’re keeping well in these troubled times. Thanks for your reply. I must say if we weren’t in these unknown times I think I would have gone to the doctors just to see if there was something I could do to help the itching. I like you don’t like the thought of sleeping aids. I’m glad I’m not alone even though it might not be ataxia related. I actually slept with no itching last night lots of trips to the toilet nothing new but slept not bad. Take care and stay safe.
🤔Hi Louise, I recall seeing posts on Facebook Ataxia Support Groups relating to itchiness, so maybe it’s not that uncommon. But whether or not it’s directly related to ataxia is something for a Neurologist to answer. Unfortunately I don’t recall if anybody had medication prescribed.
Usually I sleep well, apart from waking due to pain. But daily tasks do tire me, mostly due to the amount of concentration needed to actually do the task and keep safe. So..I take things slowly, and gradually things get done.
Hi thanks for replying. I like you have to concentrate on most things thus making me tired. Up until Xmas I never understood folk who got tired. But now I get tired doing most tasks even drying my hair 😌. I often wake up during the night with aches and pains.
I often have problems sleeping, and sometimes get the itches, or sharp pains like someone putting a needle in my body.
I have a drug called alprozolam which is on prescription. My GP prescribes this. It is an anti-anxiety medication. It doesn't send you to sleep but it empties your mind. My sometimes won't calm down.
However, alprozolam is addictive. If you take it too often then you have trouble sleeping without it. I just take it occasionally. Sometimes for a couple of nights and it kinda retrains myself to sleep properly, and then I can usually sleep better again.
I live in France so I don't know how easily this medication is prescribed in the UK.
Otherwise you could try breathing exercises. You breath in maybe for 5 seconds and then breath out for 10 seconds. The out breath has to be longer.
Thanks Alison I don’t like the thoughts of taking any medication. I’ll try the breathing exercise though, I’m still daily doing your chair exercise. Don’t think I could get up without it so thanks. 😀
Hi Again Louise, I tend to blame everything on my ataxia...,ha! I guess I remember (20+ years ago) before I was diagnosed with ataxia and didn't have any of these problems! Anyway, glad you are sleeping a bit better!!! Stay safe..., ;o)
Before I could sleep 3/4 hours during the day and sleep well at night. Last few weeks it's a real struggle! Unfortunately I don't have any advise as I am in the same position as you. I'm getting constantly exhausted but even this doesn't help me sleep well😣.
Thanks for your reply,I read your post about going to the loo. Thats the same as me. If I could sleep better I do t think I would go to the loo. As soon as I wake up I find myself going to the loo, I don’t do much but I have to go, it can range from 3-10 times a night. Here’s hoping for better nights fingers crossed I’ve only my gone 3 times the past 2 nights and hardly any itching.
Maybe our sleep is all worse at the moment due to anxiety of the unknown - the covid-19. Think this applies to most of the population, but as anxiety is often high with chronic illness maybe we're suffering more than some??
Also I find if I'm overtired then my sleep is atrocious! Everything seems to be a fine balancing act
Hi Louise, I have sleeping problem almost 20 years , I have the same symptoms like you have, I went to different doctors many times took many medicine but medicine didn’t help I think medicine make my Station worst,
Hi Don no problem for me I don’t drink tea or coffee only Vimto 😌XX hope you’re keeping well, I had my bath lift delivered weeks ago and I love it a bath now with no help
I definitely get the itchy’s!! My Dr. Gave me gabapentin but I don’t like the side effects. I put lotion on during the day when it happens. If in the evening I do a few sips of Grand Marnier or whiskey. Goes away. My mom also had SCA6 and she loved a bit of whiskey. Not even a full shot. Just a couple sips. It’s not that much alcohol. Good luck.
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