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Narcolepsy - can Primal help?

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  • Narcolepsy - can Primal help?

    It is increasingly looking as though my daughter has narcolepsy, and she has just been put on some pretty nasty medication for it (Modafinil). I know that there has been at least one study (Dr A M Husain - Diet Therapy for Narcolepsy, 2004) that shows a LCHF diet is helpful for narcolepsy, but was wondering whether anyone knew of any other studies that might offer additional information. My daughter is adamant that diet won't play a part but, as a putative medical student, she might listen/heed some medical studies. Personally, I am sure it would not hurt and would probably benefit her, but I know it would be difficult for her at boarding school ...

    Many thanks in advance!

  • #2
    I realize that epilepsy and narcolepsy are not the same thing but they are similar. Epilepsy is something I have researched very thoroughly because I have it.

    Some of the best info I have found is coming out of Johns Hopkins. (A reputable medical institution. Not something that can be dismissed as some fringe internet pseudo-sci junk.) Goggle them + ketosis and you will find all kinds of stuff about their work on treating neurological disorders with diet.

    I have been able to cut my dose of those nasty meds by 25% while maintaing total control of my seizures.

    I wish you and your daughter well.

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    • #3
      Histamine may play an important role. One of my cousins has extreme narcolepsy and there are symptoms of histimine dysregulation on that side of the family.
      F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

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      • #4
        Thank you both so much! I have printed out several papers for further reading (and for showing to my daughter), and have ordered the book Ketogenic Diets: Treatment for Epilepsy and Other Disorders (written by four John Hopkins doctors), and hope this will help. I will also do research on the histamine dysregulation side of life! I really am very grateful indeed, as this gives her a credible starting point for some research which she should find more difficult to dismiss than "Mummy's just going on about diet ...." (because, at 17, she knows I know nothing ).

        We are only now waiting for the Sleep Clinic appointments, but her neurologist seems to think that narcolepsy is pretty much a given with the symptoms she's experiencing.

        Thank you both very much again!

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