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Rarer migraine types

I have been suffering from strange episodes of aphasia and other odd symptoms frequently for the last six years and when tests for stroke came back normal was treated like I was faking, mentally handicapped, insane, accused of being drunk or on drugs, fired, and ultimately ended up on disability.

Well, two days before my appointment with a new neurologist a news reporter had her episode of aphasia from complex migraines in front of the whole country and when I met with the doctor I finally got a diagnosis that didn’t involve me being mentally ill. Hemiplegic migraine. It’s nice to know I am not alone.

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  • Kerry Sue
    8 years ago

    I also have hemiplegic migraine and my story is posted here. Unfortunately, being diagnosed with you’re crazy and you’re faking it is a part of the hazing process before being diagnosed with HM. Everyone I’ve come across via forums or discussion groups has endured the same humiliation, sometimes for years, prior to being diagnosed and getting appropriate, affective treatment. I am not an exception. I hope you are receiving good treatment now and I wish you all the best.

  • Heather Zanitsch
    8 years ago

    I don’t have HM but the stigma of migraine with/without aura alone is staggering, and I can’t even imagine the “hazing” (what a great way to describe it!) of HM. My heart goes out to both of you. I’m glad you both have diagnoses, though. Do you find your diagnoses go a long way in helping you treat this? I do not have experience with HM but I have had chronic intractable migraine since 2006, and I just got to the point where a medication is working well enough for me to get my life back for the time being. What kind of medications are available for you to take?

  • Ellen Schnakenberg
    8 years ago

    Kathy, I wish I could tell you that your story was rare, but unfortunately many chronic Migraineurs get these kinds of lazy diagnoses. I’m so sorry you had to endure this kind of treatment. Now you have a diagnosis that doesn’t involve a question of your mental/emotional stability, hopefully you will be taken more seriously in your quest for proper management. As someone who has suffered severe aphasia and was dumped by more than one doctor because I was “too complicated”, I understand the frustration and depression that can come with this kind of treatment. Hang in there. You’re making progress!

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