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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.

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Comments

  • 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.
    http://migraine.com/blog/melatonin-effective-for-migraine-prevention/

    Ask your doc about it. I hope you get some relief soon with all of this!
    -Katie
    Migraine.com 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: http://migraine.com/?s=sleep&submit=Go. 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.

    Warmly,

    Jenn (Community Manager, Migraine.com)

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