Back to all discussions

Intractable, Refractory, & Status Migraine (difference?)

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.

  1. 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

    1. Hi A. I'm sorry too that you are a migraine sufferer. I have had them for about 30 years now. I agree that starting with a neurologist is probably your first step. There are lots of new meds available now to treat and prevent them. I am like you and have a headache just about every day, the severity changing and often have several migraines a month to include lots of migraines lasting days and a few within the years lasting weeks. There are things to prevent them, like Topamax and even beta blockers that you take daily. It seems like all of these work for months and then lose effectiveness you you might have to change them up often. The Topamax helped me for a long time but now it just helps me not vomit. The sumatriptans offer me a lot of relief for the bad ones, and I just tried Aimovig but may have had a bad side effect, we're not sure if it was the Aimovig or not because it is so new.
      Also, your neurologist may recommend taking supplements with magnesium or butterbur/feverfew...but he/she will need to make sure this doesn't mess with any other meds you're on. I tried botox years (31 shots twice) ago with no luck but it did help my daily headaches when just done in my forehead. I am trying it again because my neurologist is out of ideas. You're insurance will cover this if it's the whole migraine deal and Botox.com will help too. Also, for a migraine lasting 7 days or more you can take prednisone but this is not a good thing to do often. This has broken my bad migraines. And I do use the migraine cocktail they talk about online but you'll have to get some of those meds from a doc, to break a bad one if Imitrex (sumatriptans) aren't working.
      It sucks to suffer from headaches and migraines. I get it. I have three kids and my life is really hard because of the constant pain. You are not alone. Good luck.

      or create an account to reply.