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Intractable, Refractory, & Status Migraine (difference?)

  • By Alyaine

    I am not clear on the differences between intractable migraine, refractory, and status migrainosus. I am trying to figure out what my problem is. I have chronic migraine (annoying headaches several times a week + fatigue), severe migraines every couple months that completely incapacitate me (I can hardly get out of bed/vomiting, etc.). Those do not respond to any treatment. I don’t try anymore; otherwise, I just “chase” it until it beats me down. I’ve sen neurologists. They can last 2-3 days, but rarely come on out of the blue. There is usually a slow decline lasting 5-7 days with annoying headaches that come and go. Afterwards it takes a few days to recover. If I am lucky I feel well 3-4 days a month. Sometimes I feel like I am having a migraine, but without head pain. Just a groggy sick feeling.

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  • By Nancy Harris Bonk Moderator

    Hi Alyaine,

    Thank you for sharing your story with us. I am sorry to hear you are having trouble treating your constant head pain. It’s very frustrating to be in constant head pain.

    The first thing that comes to mind is getting an accurate diagnosis from a doctor who is an expert in treating migraine and headache disorders. These doctors have board certification in headache medicine which is different than being certified in neurology. I’m currently seeing my 5th true expert and think I’m making progress.
    When you get a chance, take a look at these articles on how these doctors are different and how to find one; https://migraine.com/blog/really-find-headache-specialist/ and here is a list of doctors who are board certified in headache medicine; http://www.ucns.org/globals/axon/assets/12884.pdf.

    Here is information on intractable migraine; https://migraine.com/living-migraine/treating-intractable-migraine/ and status migrainous; https://migraine.com/blog/what-is-status-migrainosus/ and this article discusses how to break a nasty migraine cycle; https://migraine.com/living-migraine/how-do-you-break-wont-stop/.

    I hope this helps! Please keep me posted on your progress.
    Nancy

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