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.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.