Familial hemiplegic migraines

by Vicki
(Lashmeet, West Virginia)

Hemiplegic Migraine

I am a 40 year old female trying to find a new migraine specialist to treat my chronic daily headaches and familial hemiplegic migraines. There are no specialists in the area where I live so I know I will have to travel but I do not know if I would benefit from a place where I am likely to be admitted to an inpatient program or if a practice like yours is what I need. I am a complicated case because I have low blood pressure, orthostatic syncope and hemiplegic migraines so triptans, ergots, beta blockers and calcium channel blockers are all contraindicated. I am basically limited to preventive and rescue medications, no abortive medications.

I am very much aware of my triggers: weather changes, insomnia, stress release and hormone fluctuations. I changed my diet years ago to remove food triggers. In order to help avoid rebound headaches, I do not take pain meds more than 9 days a month. I have made major changes in my life to try and make it less stressful.

I had my first migraine with aura when I was 23 and continued to have 1 to 2 a month for the next 10 years. The headaches stopped in June of 2002 and I did not have another one until January 2004 following a miscarriage.

On September 10 2006, I was 4 months postpartum, and when I awoke that morning I noticed weakness and heaviness on the left side and slurred speech. I was taken to the ER by ambulance thinking I had had a stroke. As soon as they laid me flat for the CT, the pain hit! I then knew I was having a migraine. Until the pain hit, migraine never crossed my mind because I didn't have my usual vision disturbances, photophobia, phonophobia and nausea. The pain from this migraine was worse than any one I had ever had before and it lasted for 3 days. From that day on I had a headache everyday for 7 months, not a migraine but the pain was bad enough.

I was referred to a headache specialist/neurologist who was the first person to tell me about Familial Hemiplegic migraine. I did not get an appointment with him until the end of Jan. 2007 and had been having 3-4 of these migraines a month and I had moved from Va Beach to Southeast West Virginia. I was put on Topamax as a preventive and Stadol NS as a rescue ( this is the only pain med that works for me). The Topamax took away the daily headaches and had me down to 2-3 migraines a month once I reached 200mg daily. Because of this, I gladly did the 12 hour round trip to see the doctor. In January 2008 my care was turned over to my primary care physician when the specialist stopped seeing patients and went into research full-time.

Now, over a year later, my doctor is referring me out because my daily chronic headaches are starting to return and I am having 3-4 migraines a month.

I am trying to figure out where I need to go next. Anything you can suggest will be greatly appreciated.

Answer:

Hi Vicki:

You are right..you do have a complex history, but I have seen and treated far worse, so don't get discouraged.

First of all, make sure you are doing everything you can in regards to lifestyle changes that will improve your headache profile. Patients who improve are the ones who actively participate in their own care. I suspect you already are doing most of this..go to bed and get up same time every day (even weekends!) for six months. Don't skip meals..no smoking! Start yourself on vitamin therapy and after 3 months, increase the magnesium to a total of 800 mg per day.

Aerobic exercise three times a week raises serotonin in the brain and over time reduces headache severity and pain.

Severe headaches and chronic daily headaches need a specialist as your PMD says..so I found a few in your area (had to look you up on a map!) Here they are:

Kentucky:
Tarvez Tucker, MD (neurologist)
740 S. Limestone St.
Lexington, KY
859-323-6702

Ohio:
Claude Hobeika, MD (neurologist)
6527 Colerain Ave,
Cinncinnati, OH
513-385-5000

Virginia:
Lawrence Varner, MD (primary care)
400 Lexington Ave
Farmville, VA
804-392-6101

Stuart Stark, MD (neurologist)
Neuro & Headache Treatment ctr
4660 Kenmore Ave
Alexandria, VA
703-212-0700

I would actually recommend if you can travel that you consider Dr. Stark as he is at a headache center. They may be able to offer inpatient treatment or at the very least, a series of IV infusions to break your headaches.

Finally...the orthostatic syncope sounds suspicious for neurocardiogenic syncope which is seen in women with migraine. If you have not had a tilt table test done, ask for one. There is medication for this one!

Most of our patients are on multiple medications at a time, and the vitamins and two or three things at the onset of the headache. If you come to Buffalo, you are more than welcome to see us at Dent..716-250-2000.

Good luck!
Mary Kay Betz MS RPA-C