New to Forum / Hemiplegic Migraines and Topamax...

 

I am new to the forum, having recently been diagnosed by a neurologist as experiencing hemiplegic migraines.

 

I am 38 years old and have endured a virtually perpetual low-grade headache since childhood; so long and consistent in fact that it hardly registers as pain, but rather more like a throbbing pulse-like pressure sensation.

 

Approximately 12 years ago I experienced an incident in which I lost sensation, and motor control, to my left side limbs. It was a transient epsiode lasting only a few minutes in it's greates effect, and fully resolving within a day or so. I underwent a full battery of neuro-checks, a CAT scan, and MRI... all of which were returned unremarkable. The neurologist who saw stated he was able to determine nothing other than an elevated cardiolipin (for which he prescribed a perpetual regimen of low-dose ASA) and described the incident as a "TIA-like phenomenon". 

 

Life went on for the next approximately 12 years... with the omnipresent inter-cranial cabin pressure.

 

Then... approximately three weeks ago, I awoke one morning to find that the lower right side of my chin (from mid line to the corner of my mouth) had disappeared from approximately the bottom of my lower lip to the base of my chin. It was as though I had been anaesthetized in my sleep. Concerned, I contacted my PCP who arranged an office visit and MRI the same day. The ensuing neuro checks and MRI of course were returned unremarkable (which was a mixed blessing in that while I was irritated at the lack of an answer, I was relieved at not receiving confirmation of my suspicion of MS).  My PCP decided a referral to a neurologist was in order... an appointment which would take a week; one which would prove exceptionally trying.

 

While the initial symptom of facial numbness was troubling, it was little more than an annoyance. The ensuing deterioration however became downright frightening. Over approximately the next two to three days I became photo and phono-phopic to an excessive degree. It became difficult for me to endure even soft evening light and muted conversation. I began to experience some minor difficulty with my memory and my ability to engage in fluid conversation. While the effect was relatively mild during the morning and daytime hours, I experienced a marked deterioration in the evening. 

 

On the day of my appointment with my neurologist, he suggested to me that the sudden onset symptoms that I had experienced, both recently, and 12 years previously, were likely indicative of one of three conditions: MS, CVA or Migraines. He noted with considerable confidence his belief that I did not have MS given my history of normal MRI's over a 12 year span. He also noted the lack of any evidence of any CVA activity. I felt quite strongly that while I did have headaches, they were not what I understood to be "migraines". Some education by my Dr. quickly convinced me that I might be mistaken. Indeed, it appears as though the migraines I experience have something of a hereditary/genetic component in that I have a long and colorful history of family memebrs debilitated by headache and CVA-like non-CVA incidents.

 

My neurologist has since put me on 75mg of Topamax (titrated 25mg per week). It has done amazing things for me to this point. I rarely experience any head pain/pressure, and I now sleep and dream at night (haven't dreamt in YEARS). I began my first 75mg dose as of yesterday, and it has now had a sedative effect. I may speak to him about going back to 50mg if it continues.

 

I would love to hear from others who have been diagnosed with hemiplegic migraines, and how it has effected you. Does anyone have any experience/knowledge of the coma phenomena? Does anyone know anything about the familial connection?

 

Carl      

Post Edited (cfriesen) : 2/22/2007 2:45:19 PM (GMT-7)