Lifelong insomnia and narcolepsy

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This topic contains 2 replies, has 2 voices, and was last updated by narcolepsy-can-cause-insomnia 7 months, 1 week ago.

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  • #25907

    Hi! I’m Laurel. I’m in my 40s and have had insomnia since childhood, related to narcolepsy, a neurological disorder caused by the lack of a hormone that regulates the sleep-wake cycle. (Most people think narcolepsy is about being able to sleep anytime and anywhere. For some people, it is like that. But people with narcolepsy have poor quality nighttime sleep, and a significant percentage of them suffer from insomnia.)

    Anyway, I have both sleep onset and sleep maintenance insomnia as well as poor sleep quality related to narcolepsy. I thought I just had insomnia caused by anxiety until my long-time therapist suggested there was something neurological at play. Then, after 30 years of narcolepsy symptoms, narcolepsy with cataplexy was diagnosed.

    It’s hard to figure out what might be possible if I found the “right” way of approaching my nighttime sleep. I have a lot of  negative associations with night time sleep and would like to make better associations. I suspect that if I could overcome the psychological insomnia, it would improve my narcolepsy symptoms to the point where I wouldn’t need medical treatment most of the time. I’m extremely motivated. Maybe so motivated that it stops me from being able to sleep.

    Sweet dreams!

    #25973

    Martin Reed
    ★ Admin

    Welcome to the forum. Is your narcolepsy currently under control, or are you still falling asleep without warning during the day?

    #25983

    Hi!
    Most of my sleep during the day is microsleep, where I fall asleep (with my eyes open) for a couple of seconds  Other than that, I often feel half awake but don’t fall asleep. Concentrating while sitting still is difficult because it leads to feeling like a sleep zombie. hen my symptoms are bad, I have to take 15 minute naps up to three times a day on top of medicine. Sleep doctors have said that the problem of ruining sleep pressure if you sleep during the day is not the same in narcolepsy as it is in those without narcolepsy. Naps are part of the treatment. I wouldn’t say my daytime symptoms are under control, in part because the daytime meds seem to make my insomnia worse, so I try not to take them unless it’s unavoidable.  If I don’t nap when needed, it really gets my adrenaline and whatever else going, then I am even less likely to sleep at night.

    The thing about insomnia for me is that I think I psych myself out even worse because I know I have a sleep disorder. I’m not sure how not to think about it when I am constantly have to make decisions about when to nap or take medications. How can I mentally separate my daytime need to monitor my alertness, from the process of sleep at night? I do have some comparatively good nights of sleep, so I know they are physiologically possible. How can I make them more likely, aside from the usual sleep hygiene advice?

    I’ll keep reading.

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