Sleep: Hi everyone hope you’re all getting by... - Ataxia UK

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weegiz12345 profile image
18 Replies

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 profile image
weegiz12345
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18 Replies
february profile image
february

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)

weegiz12345 profile image
weegiz12345 in reply tofebruary

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.

Louise

wobblybee profile image
wobblybee

🤔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.

Stay safe 🙂

weegiz12345 profile image
weegiz12345 in reply towobblybee

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.

Stay safe in these unknown times. 😀

Louise

ww-wibblywobbly profile image
ww-wibblywobbly

Hi Louise,

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.

I hope you find a solution soon.

Love

Alison xx

weegiz12345 profile image
weegiz12345 in reply toww-wibblywobbly

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. 😀

Louise

february profile image
february

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)

weegiz12345 profile image
weegiz12345 in reply tofebruary

☺️☺️thanks

aburt449 profile image
aburt449

Hi weegiz12345

This sounds exactly like me ☹️

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😣.

Let's hope for better days. Take care x

weegiz12345 profile image
weegiz12345 in reply toaburt449

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.

Stay safe

Louise

cghere profile image
cghere in reply toweegiz12345

10 times per night down to 3 or 4. Dr. prescribed desmopresssin 0.25 at bedtime. audit sodium.

ww-wibblywobbly profile image
ww-wibblywobbly

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

Devrim profile image
Devrim

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,

Good luck,

weegiz12345 profile image
weegiz12345 in reply toDevrim

Thanks for your reply. I’m glad I’ve not had problems as long as you at least mines only been a few months. Take care and stay safe.

Louise

Veteran250 profile image
Veteran250 in reply toweegiz12345

Hi Louise........ to help you sleep, change your tea or coffee to decaf, it helped me! 😀👍

weegiz12345 profile image
weegiz12345 in reply toVeteran250

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

Louise

Litty profile image
Litty

OK my itch is allergies. Many plants and pollen are nightmares. I take Lortadine and Benadryl and use Elocon cream.

MAY be worth trying hay fever drugs for a bit - allergies can start anytime??? x

Mneutz profile image
Mneutz

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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