Hemiplegic Migraine Out of Control

By Half Alice Saturday, October 10, 2009

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I was diagnosed this summer with Hemiplegic Migraine but can find very little information on this very frightening form of migraine.

The hemiplegic migraines are out of control, happening several times a week and paralysis is lasting 2-3 days. I have been put on topamax and verapamil, however, we are either not at the correct dose or need to try something else.

I am looking for a specialist (mid atlantic area) who has some experience with hemiplegic migraine but I am having trouble locating anyone with any expertise in this specific type of migraine. Can anyone help?

Comments (6) | Add comment

MoodyMom

10/10/09 4:02pm

Hello Half Alice,

I also have Hemiplegic Migraine and have just been taken off of Verapamil due to my blood pressure dropping too low and having to go to the hospital and have to stay for a week 2 months in Row. It seemed to work OK for me for a about a year and then the Hypotension started. I am starting back on Topomax. I am seeing a specialist in San Antonio TX which is a long way from mid Atlantic but know you are not alone.

I started having episodes a week after I turned 49 and will turn 51 next month. It seems to be rare to adult onset. How old were you when this started for you.

Moody Mom

Half Alice

10/11/09 3:17pm

Thanks for the reply, Moody Mom. I had my first episode of paralysis this spring at age 40. I've been through every diagnosis from MS to a psychiatric conversion disorder. Now I'm on a combination of verapamil and topamax. The episodes are getting shorter however, I am at the max dose of topamax (75mg) without side effects. I also have problems with low blood pressure but so far have been lucky with no side effects from the Verapamil. The higher doses of the Topamax did have an effect on raising my blood pressure and also my blood sugar levels. Now it's back to the drawing board.

It's good to meet you and hopefully will be talking to you again!

Erica

12/ 6/10 5:05pm

Moody Mom, who is your doctor in San Antonio? I have the same thing and I need to find a doctor in SA. Right now I'm traveling to Houston.

Nancy Harris Bonk, Health Guide

10/11/09 2:06pm

Hello, and welcome to MyMigraineConnection.com!

I'm sorry to hear about your recent diagnosis, but glad to see you've found your way to MyMigraineConnection.

Hemiplegic Migraine (HM) is a rare form of Migraine disease that has two forms; Familial Hemiplegic Migraine (FHM) and Sporadic Hemiplegic Migraine (SHM). They both may be hard to diagnose because their symptoms can be similar to other disorders, so it is important to have a full neurological exam and full medical history taken. Take a look at this article for more information: Hemiplegic Migraine - The Basics.

We maintain a list of Migraine specialists who are recommended by patients or by Migraine specialists that we know and trust. Hopefully, you'll find one there. Take a look at Patient Recommended Migraine and Headache Specialists. In this list you will find doctors in the mid-atlantic region, except in Delaware and Washington, DC.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

Hcampbell64

10/16/09 7:57am

Did you know that hemiplegic means "half a head" and that is what a migraine is- a headache that encompasses half a head? I am so sorry you are having paralysis with that. I used to get 8 Migraines a month-this went on for about a year. I am doing better since I have been on 50 mg of Imitrex. That has made a big difference. My migraines are also related to the Fibrmyalgia that I have had since 1990 but was only diagnosed with it last year because of my original doctor not believing me. (That in itself isn't uncommon- some doctors just aren't with it).

Half Alice

10/16/09 11:50am

Unfortunately Imitrex is a contraindicator for people with Hemiplegic migraines. So are any of the other triptan type meds. They work by constricting the blood vessels and for those with Hemiplegic Migraine this can lead to a greater risk of stroke.

Thanks for the good wishes.

Hemiplegic Migraine Out of Control

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