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Diagnostic mysteries – a moving target?

I was recently diagnosed with familial hemiplegic migraine. It has been a long road only to arrive at the quarry. In my mid-thirties I started having migraine with aura four or five times a year. In the last 13 years I have begun having migraines of increased frequency and intensity.

I have not been able to work for the last four years due to up to 4 migraines per week with visual changes. My last experience with a neurologist who was a migraine specialist was able to reduce my frequency down to 2 or 3 per week, but continued to prescribe more and more medications until I could barely function. When I would try to talk about drug side effects or interactions he would brush me off, telling me to discuss it with my internist. My newest neurologist has informed me that I have hemiplegic migraine and cannot use triptans or ergotamines to abort migraine.

I am currently in limbo, with Calan, neurontin and celebrex for preventives and nsaids or vicodin to manage the pain of my 3 migraines per week. Each migraine is lasting up to three days, and I have been told to go to the ER for help if a migraine lasts 72 hours. I do not consider this a viable plan, and wonder where to go from here.

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  • Sabrina Zanetta Arana
    7 years ago

    I also have Familial Hemiplegic migraines, have had them since age 6, I am currently taking a magnesium supplement powder called “Natural Calm” before bed each night and so far it is helping to prevent my attacks.

  • Carolyn Heia Brown Childs
    8 years ago

    My nephew had an episode at about age 5 and again at age 6 which was eventually diagnosed as hemiplegic migraine. It involved a coma, a loss of some physical skills requiring physical therapy, and some short term memory challenges. It’s here and there on both sides of his family but I don’t believe anyone experienced at all what he did. Awful.

  • Susan Hansen King
    8 years ago

    That’s so sad at that young age. I’m a life-long migraine sufferer, with a long list of unsuccessful meds. I started getting Botox about 5 years ago and it is the best preventative course I’ve tried. I get the injections every 3 months and it’s reduced my migraines down to 2-3 per month.

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