I am looking for answers as to why I am having Hemiplegic migraines, Whether my Drs are competent to deal with them, and How I can help myself get over them! I will have auras, dizzyness, spacyness etcd for weeks on end, with head pain off and on every day, also having left sided numbness, tingling, sometimes complete left sided paralisis, and blurry vision. or my eyes "jump" esp. on the lfet side. I am mostly concerned that perhaps my drs have missed an underlying problem causing the migraines. They seem to be content to tell me some peopel just have migraines, even the type i have while more rare, they just dont know why. Seems to me they havnt looked very hard. Never checked brain waves, never checked my veis or arteries for blockages, no CT, nothing except an MRI to rule out a stroke or MS. I have also been diagnosed with Raynauds syndrome. They just want to throw me on drugs pat me on my back and tell me to have a nice day and that i will have to deal with the weeks on end auras, numnbess and dizzys etc. I have kids to raise I cant live this way. It gets so bad I cant drive my kids around, or sometimes cant even feed them. I need to find a way to help myself since my Drs arent doing any good. Any one who has lived with this type of migraine, please respond! Also anyone who has more info on it would be great. There doesnt seem to be a lot out there. I look forward to normal migraines after episodes of the hemiplegic migraines. My normal migraines(2-4 per month) are a walk in the park compared to it! I have been in an episode of it since the day before Thanksgiving. The last one lasted a month and half. that was in July.
Thanks!
girl!
Hello, and welcome to MyMigraineConnection.com!
Hemiplegic Migraine (HM) is a rare subtype of Migraine with aura (MWA.) This often misunderstood and incorrectly diagnosed Migraine can be challenging to treat. Familial Hemiplegic Migraine (FHM) runs in families while Sporadic Hemiplegic Migraine (SHM) has a family history of Migraine, but not typically HM. True motor paralysis is one of the key diagnositc tools in determining HM from other forms of Migraine.
Migraine is considered a neurologcial disease; a condition that is managed. Other diagnositc tests, like CT and MRI are commonly run to rule out other conditions. Recent studies have been conducted suggesting that genetic testing may be helpful in treating and properly diagnosing HM.
When we have a rare condition, like HM, it is best treated by experts such as a Migraine specialist. These doctors are on the cutting edge of Migraine disease and headache disorders. They can help you with a preventive plan and work WITH you to so you have a better quality of life. Click HERE for our list of speicalists.
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. We have a few other members with HM who frequent the forums. We hope to see you there. 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 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
PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!