How tired are you all. How much do you need to ... - Ataxia UK

Ataxia UK

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How tired are you all. How much do you need to sleep everyday? I have to sleep for at least two hours every afternoon.

wibblywobbly profile image
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wibblywobbly profile image
wibblywobbly
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nikkistowe profile image
nikkistoweVolunteer

hey im tired all the time literally, this is not helped by my current pain relief. but a few years ago i was refered to see a sleep consultant because i had sleep apnea he did many tests and refered me to st thomas's in london to do a detailed sleep test which is similar to an ecg you have 75 pads put all over you head and arms and legs and they measure brain signals during sleep. anyway after all that i was diagnosed with 'secondary narcolepsy' not many have heard of this not even doctors its caused by neurological illness and causes the brain to think your tired all the time and fall asleep really easy. you dont just fall asleep ,like normal narcolepsy. he prescribeda drug called modafonil which is legalised speed.

hope that helps?

wobblybee profile image
wobblybee

A few years ago, prior to being diagnosed, I started having periods where I would

suddenly feel extremely tired and desperately want to sleep. Energy levels were

low and concentration poor. This situation continues but is sporadic.

I was once diagnosed with Epilepsy, would the same area of the brain be affected

Narcolepsy?

Litty profile image
Litty

I try to have a 1 to 2 hours nap everyday. Either before or after lunch. You can start again and do far more with the afternoon. I find too that if I have a busy day, I really need to cancel doing anything the next one to properly recover : )

Willowpuss profile image
Willowpuss

I to recognise the replies to the question,being similarly affected,maybe it is part and parcel of the condition.

lindadoc profile image
lindadoc

when my son was diagnosed with CA, i was told chronic fatigue was part of the condition, also that he will use so much energy to do simple tasks. which has proved to be so true.

I seem to be the opposite! I need to keep myself occupied all day. Only when I can't find anything to do I lie down and try to relax which I find hard to do!

jurgen profile image
jurgen in reply to

I sleep 7 hours at night (midnight--------> 7 am) and 20 min in the afternoon

Regards

wibblywobbly profile image
wibblywobbly in reply to

Are you taking baclofene medication. Because this is the effect it had on me at the beginning. After a few months settled down and stopped.

jurgen profile image
jurgen in reply to wibblywobbly

No, I am not taking Baclofen .

weather permitting I daily take a 1/2 hour´s walk

with that bl....rollator - maybe that makes me tired

Regards

wibblywobbly profile image
wibblywobbly

well everyone seems to be tired, except Iain25. I am now sleeping up to 4 hours per day at mo. But I have been doing a lot socially lately and now feel that I have reached rock bottom regarding my tiredness.

I still work a few hours per week teaching English to foreign students. This requires high concentration. I am about to reduce my hours of work even further - will be working only 4/5 hours per week after that.

I don't know how much everyone else is doing during their normal day? Would be interested to know.

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