Progressive complete insomnia

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Hello, I suffer from complete insomnia (sleep only with heavy dozes of sleep aids) for a few years. In the last few months it has gotten worse and worse and every night I have to take more pills from different types in order to get one hour of sleep. Doctors are completley cluless about insomnia and they are not even trying to diagnose what's cousing that. the only tests I did were eeg (which demonstrated the insomnia) and an MRI. I read about Fatal insomnia and Whipple disease as potential causes to this problem, but the doctors tell me they don't know and I go from one doctor to another without diagnose. Can you help me? maybe even reffer me to a good neurologyst who will try and diagnose the problem?

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  • Posted

    Hi,

    As regards to top Neurologists in the UK, your best bet is Jon Stone, he is a well known Consultant Neurologist whom specializes in "Functional Episodes", there is 28 known variations of this disorder alone, he also covers many other nerve disorders. Many Neurologists in the UK point patients to his website to read up on symptoms and even cures.

    If you want to contact him you can via his website:

    http://www.neurosymptoms.org/

    Regards,

    Les.

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  • Posted

    Anyone???
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    • Posted

      I have replied to your question, but it is in moderation awaiting approval for an external link I provided for you.

      Sorry for the delay...

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  • Posted

    Hi Zohar,

    So very sorry to hear that you are suffering in this way. It sounds awful. Are you having other symptoms as well? Forgive me for this, but is there any chance that this may be psychological instead of neurological?  It sounds as if you're brain needs to retrain itself to sleep without sleep aids -- I know, easier said than done, right? It;s just a thought but I mean to be helpful.  I hope you find the help and answers you need!

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  • Posted

    Thanks everyone.

    To blessedumum- I have tried the psychological wat for a long time even though I knew from the begining that this is not the reason for my insomnia. and the fact is that it's getting worse and the problem is not diagnosed. that's why I'm eager to find the one neurologyst that will do some tests to find out what it is.

    I read the following cases:

    http://www.ncbi.nlm.nih.gov/pubmed/16086132

    http://www.ncbi.nlm.nih.gov/pubmed/24210076

    and maybe one of these things  is what I have. Or maybe it's Sporadic fatal insomnia.

    Can you help me find a very good neurologyst who can help me in diagnosing the problem?

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  • Posted

    If they don't approve the comment because of the links I provided there- I read about Whipple's disease and something called Anti NMDA receptor encephalitis that cause complete insomnia.
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