My wife woke me the other night because I was playing a trombone in bed. The full mime. (Strange as I don’t even play one when awake) I have started doing other absurd mimes in my sleep, I have read up on it, it can be a symptom of Ataxia.
jason conrad jones said:
My wife tells me I physically move when I am in bed she says I turn over in my sleep
For 12 years this has been a problem for me that has improved substantially. It was initially caused by depression I believe. being diagnosed with ataxia is no picnic. Later I learned that my thyroid levels were too low for me (still within normal range). After a prescription for thyroid hormone my daily afternoon nap disappeared. In the last few years when I began sleeping too much again my doc sent me for a sleep study and I now use a bi-pap and it makes a huge difference.
After my 3hr sleep yesterday afternoon, as expected I had interrupted sleep last night from after 4am.
My husband said I should have had a timer/alarm on so I didn't sleep as long in the afternoon. I wasn't
really sleepy when I lay down, but once relaxed and asleep I was dead to the world, I don't know if
anything would have woken me. During previous nights I had slept pretty soundly, except for the
bathroom breaks, after which I had no trouble in dropping off again. Sometimes if I sleep too soundly
I feel worse, it takes longer to get to a grip when I do get up.
I sleep in another room because my husband could snore for England! But, I notice I have a dry sore
throat if I wake during the night, so maybe his theory that I also snore hIs a point. I still maintain he's
worse!! Sleep Apnea could be a reason, also despite having Thyroid TSH levels within 'normal range'
I'm still not convinced all is not well. I have symptoms in a cycle, that suggests differing levels to me.
Thanks Rose - I have seen that on tv programme but didnt realise it was the only way to be diagnosed.
I dont think it could apply to me personally as I feel okay when I wake up apart from taking a few minutes to orientate myself.
I cant get up answer phone as my muscles go rigid - have to remember to bring phone with me before I sit down or just let it go onto voicemail.
xx
Sleep Apnea could be a reason in my case, I've also seriously considered underactive Thyroid.
Told my levels were within range (TSH 211) I'm not convinced that for me that is too low.
But, getting a GP to take things further is another story.
Sorry, my laptop is having delay problems, I thought my previous post hadn't gone!
So I seriously abreviated it!
Not sure it is your laptop Beryl - so many invasive programmes online lately - cookies and scanning programmes, they all slow things up!!!!!
Our usual internet connection line is not working today - engineers working on it for up to 6 hours so I am using wifi fon.
I know what you mean about getting GP to take things further - I have given up but if I were younger I would feel differently.
If I need any medication, I opt to see nurse as I cant be bothered with doctor.
xx
Hi Beryl,
I am new around here as you may have noticed, but have exactly the same problems.
I tought it was the slow functioning Thyroid and drops actually do help a little with my fatigue and with my very very sound sleep. When I wake up I just know things have happened around me but I hear nothing at all. It’s as if I go somewhere else…Since my ataxia has been recently diagnosed ( in 2011) and its progressing very fast, sometimes I am really scared. But still I do not want to give up work, even though I know I will need to at one point. It’s juts becoming work and sleep…sleep and work…
It’s all about do-overs, I’m learning…thankfully, it was just food.
Beryl Park said:
After my disasterous baking session this morning I realised that fatigue had got the better of me.
I slept for 3hrs. Better luck tomorrow!
Hi boat2011 (what does it mean?)
I really don't know how anybody works with this condition. I worked with my husband, even he got to the point
where he would have asked me to leave! It got to the point where it took me all day just to turn around, I was
in my own little world. It's just taken me 1hr to make some pasta sauce, it's never the same each time I make
it, I haven't enough concentration to follow a recipe, I just hope it's edible!
boat2011 said:
Hi Beryl,
I am new around here as you may have noticed, but have exactly the same problems.
I tought it was the slow functioning Thyroid and drops actually do help a little with my fatigue and with my very very sound sleep. When I wake up I just know things have happened around me but I hear nothing at all. It's as if I go somewhere else.......Since my ataxia has been recently diagnosed ( in 2011) and its progressing very fast, sometimes I am really scared. But still I do not want to give up work, even though I know I will need to at one point. It's juts becoming work and sleep.......sleep and work....
Boat is because one morning i woke up and my bed was rolling me down…I was holding myself on it and it seems as if I was about to fall…I tried to stand up but it was as if I was on a boat on rough water…many other things happened after that …after six months in bed i was lucky because a diagnosis of EA type 2 was made and I was given a medication. It seemed as if my life was back to normal…in reality it never really did. I had a so called “late onset” of the illness. But it is progressing…
I forgot…I am sure the pasta sauce was good Beryl!
From sleeping too much to spaghetti sauce… Hmmm, howd’we get there? Interesting and quite fun too! 
Hi cicina, When one sleeps too much anything can happen…or maybe because I am Italian 
Unfortunately the sleep problem effects also people around you and this is the saddest part…
Hi Boat,
From your answer on the discussion “dizzy” I am in the same boat you are. I woke up early one morning, a year ago and next thing you know, I was on the floor and could not get up. My balance was completely gone. Like you, I felt like I was on a boat,. The dizziness has not left me, except when I sleep.
Of course, I welcome bedtime everyday and will not hesitate to take a nap when needed…
This boat is sailing in circles and taking us nowhere. We are literally on the same boat…but with Beryl’s famous spaghetti sauce. So there is hope.
Cicina you have great humour and this is wonderful of you! And yes…we all feel like trying Beryl’s spaghetti sauce! Maybe it will lift us up a little…
I don’t know if this is boat is taking us nowhere…I found you, Beryl and all the others, in a way it’s good to know we are not alone on this boat and that even if far away we can have a sweet thought for one another, or as you did a joke that makes one smile. Thank you for that.
Ran, Cicina is right you asked a precise question in fact, about how to avoid sleeping too much.
Well, I don’t know really. “I am new to the illness” and about to take the horrible decision of leaving my job too. Which means lots of things for my family…a total change of life since I am the main supporter…
One of the problems is in fact fatigue…Is it growing fatigue that makes you sleep?
It does to me. I feel very tired and then I just need to sleep. Maybe some vitamins may help…I am trying…
HI Boat2011, I already responded to Ran's discussion, but wanted to respond to your question. I was diagnosed with ataxia 10 years ago. I retired from my job as a social worker (28 years) 7 years ago, due to my ataxia symptoms. Anyway, fatigue is a common theme for those with ataxia. My theory is it takes a lot of energy to do things with limited balance/dexterity and frankly, it's physically exhausting. I'm always thinking (24/7) about how I'm moving so I won't fall (I use a cane). so it's emotionally tiring also. Anyway, physically/emotionally, it takes a toll! I've been on an anti-depressant for several years (originally for a different reason) and that helps me ''deal" with my ataxia better. Any disease can cause depression/sadness, which in turn can cause tiredness also. I exercise for strength and balance and that gives me more energy. I also eat healthy (lots of veggies and fruit etc.) and take a multi-vitamin, vitamin B-12, vitamin D (1000 mg daily), CoQ10 (300 mg am, 300 mg pm), 2 fish oil caps & 1 flax seed cap daily. Of course, always check with your doctor before taking anything! This site is great for support and understanding! You are not alone in your journey! My best to you..., ;o)
Well said Rose . A very articulate explanation.
thank you Rose,
I really appreciate your support and the information you have provided me. I will check with my doctor. I am back in bed today. In the office I have told what is going on and my intention to leave the job. I am exhausted and I cannot sleep either. I am feeling so bad I feel strength is just leaving me today…It’s a big decision and change. I have been crying all day. Thank you for your support, I need it Love to you and Marie…
Thanks Boat2011 and Marie, we're all in this together! Ataxia is extremely frustrating, challenging and tiring, but we have no choice, so we just do the best we can! I'm so glad I found this site, although I'd NEVER wish ataxia on anyone! I feel so much less "alone " with this, as I have others to talk with that truly understand and can be supportive. I've learned so much from others, and for that, I'm truly grateful Although difficult, I find it helps to have a positive attitude. I can't control having ataxia, but I can control my attitude...,ha! ;o)