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Sudden Continuous Migraine with Aura

  • By alib

    Hi, I am new to this forum and a new migraine sufferer. I am a 45 year old healthy female. While at work in April had an aura with right sided weakness/numbness and was rushed to hospital to rule out a stroke, which they did. I was diagnosed with an aural migraine. i was bedbound for almost 6 weeks before I found the a physcian to help me.
    It is now almost 6 months later and i have not been pain free for 1 minute. I have nerve pain in my head at all times, it is not a pounding migraine but my dr. considers it an intractable migraine. I had no idea people had to live like this. they initially tried indomethicin ER three times day with compazine & verapamil…this combo got me out of bed.I am still suffering with daily headpain, had infusions and am now on all new meds that include nortryptilline, neurontin and celebrex…
    Has anyone experienced anything similiar to this? I feel very helpless & hopeless right now. Trying to make my way to Johns Hopkins but very hard to get appt there.
    any similiar experience or way to cope would be helpful.
    Thank you
    Alexis

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  • By Nancy Harris Bonk Moderator

    Hi Alexi,

    Welcome to the discussion forum! Thank you for sharing your difficult story with us. I wanted to let you know you are not alone with your migraines. Many of us here understand what you are going through.

    That’s a significant chunk of time to be in bed, it must have been awful. I wonder if it is time to see a ‘true’ migraine specialist. As much as neurologists are fine doctors they have a hard time being experts in any one area because they treat so many other conditions such as MS, stroke, epilepsy and more. A migraine specialist is just that, THE expert who is board certified in headache medicine and treats migraine and headache all day, every day. Let me share information with you on this topic; https://migraine.com/blog/how-are-migraine-specialists-different/migraine and https://migraine.com/blog/looking-for-a-migraine-specialist/ when you want to look for a migraine specialist.

    Nancy

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  • By Ellen Schnakenberg

    alib – There is a condition called Intractable aura without infarct. This means that the aura is there, but there has been no physical damage to the brain as in a stroke.

    In my particular case, my auras have been nearly constant the last few weeks. Working when I can’t see is nearly impossible, but I keep trying. For me, a medication change resulted in thyroid fluctuations that are severe for my super=sensitive brain. My brain just doesn’t know what to do with everything going on with it right now. I lose the ability to speak, can’t drive, get dizzy. Aw, it just goes on.

    Now, in my case, we know this will eventually wear itself out when my thyroid levels even back out. I’m not afraid, but I am miffed and frustrated at the problems it is causing.

    I always tell patients that an aura that isn’t responding to an abortive is a reason to see a doctor asap. It is rare, but possible that stroke can result from these symptoms. It can also be a sign of comorbid seizure concerns.

    The thing to remember as well, is that preventives can take weeks or months to begin to do their job. There are other things that can be given that may be more effective. A good Migraine and headache specialist will be the best person to help you figure this out. I would encourage you to find one near you and consult them: https://migraine.com/blog/looking-for-a-migraine-specialist/

    ~Ellen

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