2 Years of Hemiplegic Migraines

I had my 1st migraine when I was 12. For many years I had 1 or 2 a year that lasted a day or 2 and weren’t more than temporarily painful and annoying. Then about 2 years ago I was in a car accident (I was a backseat passenger in a car that was rear-ended) and shortly afterward began having severe, frequent migraines with slurred speech, staggering, confusion, partial paralysis on the right side of my body and unequal pupils. It progressed to having a nearly constant round-the-clock migraine with nausea, light sensitivity etc. and several times a month the neurological stroke-like symptoms would appear. I was worked up with CT scans, MRIs, EEGs, a spinal tap, hospitalized 3 times and became a frequent visitor to the ER. (I only go to one ER where my primary care MD practices and where they have all my records.) I have seen several neurologists all of whom have said I have Hemiplegic Migraines. The only test that ever showed anything was one MRA (which is angiography MRI) showed a Basilar artery dilated but all the other scans and tests were normal – I do have 2 bulged discs in my neck. I have taken a bunch of different meds to try and prevent the headaches with no luck so far. I currently take Topamax, and Verapamil. For abortive meds I’m very limited – I can’t take triptans or ergotamines due to the risk of stroke from Hemiplegic Migraines (the FDA actually says they’re contraindicated) so I’m left with hydrocodone, Fiorinal, Compazine and Zofran – for nausea (which can be awful like being seasick) – and when the attacks are unbearable I have to get IV meds in the ER.

Its severely impacted my life. I used to be very active – for example I played softball from early Spring to late Fall several evenings a week. I can’t play sports anymore. I had to go on disability from a job that I loved (I was an Emergency Manager for a large metropolitan city) and I tend to be an extrovert – its really isolated me from a lot of contact with people. I’m grateful that I have some very close friends that keep in close touch regularly.

And I haven’t given up. I’m still optimistic that together with my doctors we will find the right combination of preventative meds so that I can return to a normal life. I have a wonderful girlfriend who has been extremely supportive – its been as hard on her as it has on me but she’s stuck right there with me without “nursing” me or giving me much advice just being there for me. And I do have a great doctor who has seen me at my worst and is committed to finding answers.

So that’s my little story.

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