Okay I stepping out and posting another question and hoping to get some advice. I have never been a normal sleeper and it has always been an issue with my everyday life. It is so very difficult for me to get to sleep and stay asleep. I have the fatigue from ET but sometimes I feel it is just because I really don't sleep. It is getting worse and worse. I do not have sleep apnea and I do all the things you are supposed to do for a good sleep environment.

I am a very light sleeper and I have a brain that just never shuts down. I have tried a lot of different things but I really don't want to resort to any heavy duty medication. If I get 7 or 8 hours of sleep I am so grateful.

I'm exhausted all day and when I get to bed I am can't fall asleep. It's a pattern I want to change but nothing seems to work. I did read this is another symptom but would really love to hear your feedback on this.

Thanks again, Janet

10 Replies

  • Hi

    Me again.....

    We had a Psychologist do a bit of a talk at the last east mids support group. She talked abit about poor sleep patterns, and how there are things you can do to help. She talked through some things, it was brief but i could really see how it might help.

    I find reading helps me, but i know a lot of people that stimulates the mind rather than relax so wont help for all.

    Could you ask your GP or consultant if there is a Psychologist you could see, i must admit before the lady did the talk i would have been sceptical but I did feel after she knew what she was talking about and would be of help in that situation.

    Worth asking


  • Hello

    I can totally understand this as I have similar bouts. I use a mindfulness app called Buddhify. It really helps me to refocus my thoughts and, more often than not, I have dropped off before the end of the session.


  • Do you find your self feeling restless and uncomfortable? If you Iron levels are low you can suffer from Restless Legs Syndrome, it took ages for me to get to the problem and it is treatable. I was prescribed Pramipexole, bizarrely a Parkinson's drug which I found to be effective.

    All the things about good sleep hygiene can also help.

  • Hi janet123 , i could have written that post its me to a tee , i do not feel at all refreashed when waking in morning ,my whole body feels like i done a workout at gym sort of thing my Gp gave me a mild sleeping pill i get 6 / 7 hour on that i only take it when im desperate , dont know if you and Gp would consider that in moderation ( they can be addicted ) x

  • Could you please provide me with the name of the Rx? I feel desperate. I take an occasional Xanax for anxiety but has not been working for sleeping. Thanks much.

  • I take Zopiclone 7.5mg i take half tablet , but not every night it can be addictive otherwise x

  • I appreciate all responses. I will give everything a try. Wishing all of you sweet dreams.

  • Hi.

    I know how you feel, it's incredibly frustrating.

    I've been a fairly bad sleeper for years, but would never ever take sleeping tablets!

    The following have helped me ( I presume you already sleep in a very dark / blacked out room?)

    Try the following - won't be easy for you - for at least two months

    Cut out alcohol altogether

    Cut out ALL caffeine inc decaff and chocolate. Fruit tea, naturally caffeine free tea

    Eat your last food before 6pm and nothing afterwards

    Cut out all processed foods that contain chemicals, additives and preservatives.

    Walk briskly at least for an hour and a half a day

    No computers or iPads after 6pm in the evening.

    No tv or mobile devices in the bedroom

    If nothing else you might feel better in yourself.

    Good luck.



  • Forgot to say, we don't all need 7 or 8 hours sleep you know, it could be that you can manage perfectly well on 6 - I do, and feel fine. We're all different and worrying that you're not getting enough sleep will only make it worse.


  • Louise,

    Thanks for your tips. A few things on the list may be difficult. I am glad to hear that you are doing well with that routine. Very good motivation.

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