Hi I am 61 and I have have as yet an undiagnosed type of ataxia. It is thought it maybe coeliac ataxia as I was diagnosed with coeliac disease last December. I have more energy in the day than I have had for years.Since removing gluten from my diet.But by the early evening I am ready for bed between 6 and 7 and I sleep soundly for 12/13 hours. As soon as my head hits the pillow I am asleep. I have had plenty of blood work done and I am not anaemic,B12 and vitamin D is fine. Nor do I have thyroid problems I have just paid for a full thyroid panel and it came back fine. Is this great need for sleep part of ataxia? Also when I have been walking a while with my rollator I lose control of my left foot and it flaps about.

23 Replies

  • Hi Jill55, I don't know if it's part of Ataxia or not, but I have SCA1 and I also fall asleep the moment I hit the pillow, fortunately I am ok if I get 8 hours, but I do "need it". When I'm wake I'm constantly tired which is so depressing, I have to take naps.

  • Thank you for replying.

  • Hi

    I don't have a formal diagnosis of ataxia or gluten ataxia but can identify with your position very much. I took gluten out of my diet about 18 months ago and feel ten times better and have experienced a bit less dizziness etc. I get horribly tired and all the rest of it having thyroid problem, diabetes, asthma and so on. I also get dehydrated very often and find a packet of Dioralyte helps m feel human again, it might be the case with you it might not. The good thing is that you can try it with no side effects and if it helps that's good if not nothing lost.

    I have also gone through the stage of managing to walk outside and then losing 'power' part way, used a quad cane for a time but now have to use a wheelchair whenever I go anywhere involving more than a few steps.

    No answers for me and no diagnosis just hanging on in there...

  • Thanks Sheild. I use a rollator now as I found using a walking stick wasn't enough. When I've done too much my left foot just seems to dangle on the end of my leg. Its weird trying to get your head around all these symptoms.

  • Just go with it it's bloomin' frustrating I know but make the best of what is left.

  • Dear Jill55, I'm 63 years young...,ha!..,and have had an unknown form of ataxia, diagnosed thirteen years ago, although I had very minor symptoms starting about eight years before diagnopsis. I'm constantly tired, no matter how much rest I get. Guess it's just one of the many symptoms of ataxia! My best to you...,;o)

  • Thank you February. I'm 61 I'm struggling a bit. I have 2 disabled daughters one in particular that relies on me to help care for her and her 2 children one has autism. Fortunately my husband has now retired and is helping a lot. I think I am having problems resigning myself to the fact that I am also now disabled.

  • Hi February

    My hubby also 63 diagnosed 8yrs in wheelchair 4yrs he goes to bed 7.30 pm and wakes around 8am his speech is very bad but when he talks in his sleep its a bit better. He talks & shouts all night long.


  • Dear Jill55, You really have your hands full, so glad your husband can help! Yes, I don't think we ever get used to having a disability, so frustrating and challenging! Just continue to do the best you can! Something I say to myself (quietly) almost on a daily basis is, a women is like a tea bag, as she never knows how strong she can be until she gets into hot water...,ha! Thinking of you...,;o)

  • Thanks february. I think people must think I'm going for the sympathy vote. I get embarrassed about out bountiful ill health. Both my daughters and grandson have genetic conditions which neither my husband or myself knew we had, but have passed on to them. Keeping on top of all the information on our various ailments is a full time job let alone trying to educate Drs!

  • Hi jill55 I too sleep loads, I usually wake up tired! I don't know if this is part of Ataxia, my type is also unknown, maybe it's not discovered yet. I donate blood & DNA for Genome England so who knows, it may be a new type of Ataxia yet to be discovered.

    Keep well


  • Hi Jill, you do have your work cut out don't you. There's a good chance that this is gluten ataxia as its already known that you have coeliac and gluten ataxia is essentially the neurological complications of coeliac disease. The good news is that if it is GA then you can get some improvement in your condition and stop progression if you keep gluten free.

    Tiredness is a symptom of ataxia, its a neurological tiredness and its been explained to me as being because your brain is working harder because of the illness, therefore you get tired more easily (not sure if this is true!) Tiredness can also be a symptom of coeliac disease due to vitamin/mineral deficiencies - make sure that you're taking a multi vitamin and eating well. Sometimes the tiredness will improve once you've gone gluten free. Has your doctor tested for common deficiencies? In general they don't! What medication are you taking as some of the drugs you will be offered can make the tiredness worse.

    I would suggest that you get a referral to one of the 4 ataxia centres in the UK - Sheffield would be my choice with Prof Marios Hadjivassiliou if you can! They will then do all the checks on the sort of ataxia and any related deficiencies including checking your thyroid function. Although you have had a thyroid panel done it can be the case that your blood results are in the (so called) normal range but your thyroid is in fact not working well - this an also improve on a gluten free diet - apparently there is a strong link with gluten antibodies and thyroid illness, because the gluten (gliadin) antibodies can also attack thyroid tissue!

    I would also make sure that you are eating good fats and not following a low fat regime as the brain needs fats to repair - a Mediterranean style diet (not the pizza/pasta sort!) is good and works well on a gluten free diet!


  • Thanks Gill. My GP is very good and has tested me for all the usual vitamin deficiencies. I was referred straight away for bone scans as well. It was only my vitamin D that was low that has been corrected. I noticed a big difference when I was on the loading dose. I now take 4000u a day per recommendations from Nutrition.org Michael Greger MD. NHS was only 1000u.I am taking B12, Vitamin D magnesium Ubiquinol and a BP medication. I eat a whole food plant based diet, no processed food at all not even ketchup. I make my own gluten free bread. I felt so much better once gluten free I threw my medication for depression away. I see my GP next week and my neurologist 30th May. I should then receive the rest of my blood results. The neuro has been looking far and wide in all directions including cancer as to the reason for my ataxia. It has already been mentioned about a referral to an ataxia centre. I will be asking for Sheffield. The tiredness has got worse in the last couple of months. Maybe as my energy has increased during the day the pay off is being so tired in the early evening. I am able to do so much more than I could previously. I had been incapacitated during the previous 5 years with spondylolisthesis (broken spine slipped forward). I had a spine fusion 2 years ago and it has taken a long time to recover my energy levels and mobility. To suddenly be told I have ataxia. When previously it had been thought my balance issues were caused by my spine. Sorry I'm writing a novel again but I have no one that understands what is happening to me. I thank everyone sincerely for replying to my post.

  • Keep writing and keep letting us know how you get on, there is a lot of support here and with strange sorts of conditions its good when others understand what you mean isnt it! Sounds like you have a good GP, you're very fortunate, they aren't all!

    The extra tiredness could be because you're doing more now or it could be a bug or something completely unrelated!

    Take care as you are!


  • Thank you again. My daughter has been admitted to hospital again tonight. More stress and two little boys to care for. In reality is it surprising I'm exhausted by evening! Thank you everyone.

  • I sleep between 10- 12 hours over night and then 2-3 hours in the afternoon so yes it is definitely a symptom of ataxia.

  • Thank you anihol that's really rotten for you, very reassuring to know that 12 hours is not unusual. Sending hugs.

  • I get so tired I have a 2 hours nap every afternoon and if I have a busy day I need a rest day the following.

    My neuro-physio says we need more sleep because it takes us so much more effort to appear normal.

  • Thanks Kitty I'm running on empty today.

  • If you can try an early afternoon nap - I started with an hour and now I so need 2!

  • I have tried but can't seem to drop off. I seem to buzz in the day!! Because my daughter has been admitted to hospital again I have somehow found the strength to push myself to stay up longer it is a mammoth task!!

  • When the clock reaches 6 my body is willing me to get to bed!!

  • I understand fully - when our babies how ever old they are are in hospital (mine is this week too) it is horrid. If I cannot sleep I try to just lie down and shut my eyes. Good luck and sleep when you can for now and try it when it is calmer : )

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