Finally, A Neurologist Who Knows Their Stuff
I found a wonderful neurologist who specializes in headaches/migraines. She is running many blood tests to look at vitamins levels, hormones, and more importantly auto immune disorders (a possible factor of or causing the migraines). Her physical exam found my blood vessels to be very constricted, which most likely are contributing to the hemiplegic migraines.
She wants me to have a genetic test done to check for the hemiplegic gene (I didn't even know one existed). My doc told me what I have learned and been told about HM is almost all wrong. Triptans will not cause me to stroke, most of the medications my doctors have tried over the past 6 months are very out to date for treating HM, and most importantly, my last MRIs were NOT normal. I have cloudy areas in the white matter of my brain. My doc said she only sees this 'cloudiness' with people who have extremely high blood pressure for extended amounts of time (I have normal to low blood pressure). She said I'm not to worry about the cloudiness, that it is reversible and not life-threatening.
I started on Zonegran Saturday as a preventative and will begin either Botox shots or Frova. Starting Frova depends on the results of the HM gene testing. If I have the gene, I am predisposed to vessel constriction, which Frova may make worse.
I was so happy someone finally found something and has a game plan to help me, not just give me more drugs.I truly hope everyone can find a headache/migraine specialist near them. Don't give up hope. Keep looking for answers.
Have you checked out the new Community Hub yet?