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Why I’m not sleeping

So I have to start by sharing that this site, stories, and articles have been a savior to me. I thank all of you who have shared.

Some things about me:
I have Narcolepsy with Cataplexy. After nearly 6 years fighting for a diagnosis for this, and getting proper treatment/medical team, I’m at least old hat at ‘hurry up and wait’
I have a strong family history of migraines, had abdominal migraines as early as 3, and had my first honest to goodness migraine at 13, right when I started menstruating. But then they “went away” for these last 10 years. I would have occasional issues that all came back to migraines, but nothing serious until about 2012.
I don’t know how most people’s migraines work (there really isn’t ONE way) but I am most affected by the prodrome, postdrome, and aura. By the time I develop head pain (if I do) my body is so beat that it doesn’t mean much. I typically experience a 2-4 day prodrome/aura, and if no head pain develops, a 2 day postdrome. The list of prodrome symptoms on the site reads like my tracking diary, save a few. But my most two crippling symptoms are severe vision changes that last the duration of an attack, and….insomnia. Horrible, horrible insomnia. Because of the narcolepsy, I have a strict sleep schedule I maintain. If something disrupts that, I get a Migraine. But as soon as I develop prodrome symptoms, sleep is out the window, despite sleep medications from my neurologist. Am I the only one who drags myself to bed thinking “this could be a problem” only to have your eyes act like they’ll explode if the lash lines touch? My neurologist has been dealing with my Narcolepsy for 3 years, but we just started trying abortive meds for migraines. They just don’t help the insomnia.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Katie M. Golden moderator
    4 years ago

    Sleepy Bri,
    Sleep is the bane of my existence. During an attack and postdrome I may sleep 18 hours a day. When things aren’t so bad, I still need a daily nap and then it can take an hour or two to fall asleep.

    I don’t have the narcolepsy issue that you do, but I wanted to suggest a preventative Migraine medication that might help you fall asleep at night. I’ve been using Amitriptyline for years to help with my Migraines. If I take it an hour before I want to be in bed, I’m definitely sleepy by that point.

    Ask your doc about it. I hope you get some relief soon with all of this!
    -Katie Moderator

  • Jenn Lebowitz
    4 years ago

    Hi Sleepy Bri –

    Thank you so much for sharing your story, and sorry to hear about the challenges you’ve been experiencing!

    In addition to potential feedback you may get from the community, I thought you might appreciate this link: It will take you to all our articles mentioning sleep. You are certainly not alone in having challenges when it comes to getting rest, so I hope there is at least some solace in that – and as you know, you are welcome here any time you need support!

    Thinking of you and wishing you my best.


    Jenn (Community Manager,

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