Chronic Hemiplegic Migraines

THX1138 Community Member June 06, 2012
  • My wife has these headaches up to 9 times a day. She started these attacks in March this year. Her first attack was just getting out of the car and falling to the ground. Her headache included right side stroke symtoms. The ER thought that she was having a stroke and gave her TPA and sent her to another hospital for care. With these attacks she has a left side headache behing her eye. She can not speak, vision is cloudy with some right side drooping of the face. She also has a right hand tremor. She right side weakness from top to bottom. She has made 6 ER visits since this started and has been in the hospital nearly everytime she goes to the ER. Her attacks start when asleep, about 5am. She has continueous attacks until late afternoon. Her doctor doesn't know what to do for her. She is on several medications including Topamax. They don't seem to work. Sometimes, her memory is a total blank. Her doctor says that these attacks are not hurting her. One thing that I worry about is not knowing if she is having a real stroke. More in another post.

5 Comments
  • SunshineGal
    Oct. 16, 2012

    I'm 54 years old.  I've had increasing problems over the past 5 years, REALLY bad this year.  First diagnosed with MS then Epilepsy, now Hemiplegic Migraines just this March.  Primary problems have included left side pain and numbness (face, arm, leg), severe muscle cramps, sometimes the migraines and auras, memory and speech problems that lasts...

    RHMLucky777

    Read More

    I'm 54 years old.  I've had increasing problems over the past 5 years, REALLY bad this year.  First diagnosed with MS then Epilepsy, now Hemiplegic Migraines just this March.  Primary problems have included left side pain and numbness (face, arm, leg), severe muscle cramps, sometimes the migraines and auras, memory and speech problems that lasts for weeks after, insomnia, etc.  Episodes never seem to go away before another bad one hits.  On 4 different meds, now. 

     

    Then while trying to understand this disease - Boss at work told me to find a new job, husband & I divorced (after 37 years), and only brother died.  All since March!

     

    No family left to speak of just don't know where to turn and concerned that this disease will never stop getting worse.  Out on FMLA right now, suppose to go back to work next week, though boss doesn't want me back.  Worried about loosing my house and an income going forward.  Any ideas folks?

    • THX1138
      Oct. 16, 2012

      My wife has the same migraines and weakness on her right side. Her HMs started in March of this year. So far the doctors have no clue what to do for her. Her migraines start from sleep everyday. She is now having these attacks six to eight times a day. Some days she wakes and ask where she is. Just the other day she said she didn't know how to turn on the TV...

      RHMLucky777

      Read More

      My wife has the same migraines and weakness on her right side. Her HMs started in March of this year. So far the doctors have no clue what to do for her. Her migraines start from sleep everyday. She is now having these attacks six to eight times a day. Some days she wakes and ask where she is. Just the other day she said she didn't know how to turn on the TV with the remote. Her doctor says she can't work or drive. So far, she has had over 500 attacks since March. She has a hand tremor and face droop with each attack. Her head pain never goes away, it increases with most attacks. Her doctor did tell us that these attacks are not hurting her, i disagree, I see signs everyday that these attacks are doing something to her brain. We were also told that he doesn't know when they might stop, but not last the rest of her life.

      I feel your pain and hope you get better soon. 

    • SunshineGal
      Oct. 16, 2012

      Thank you so much for sharing.  Sometimes it's just nice to know you're not alone.

       

  • Nancy Harris Bonk
    Jun. 07, 2012

    Hello, and welcome to HealthCentral's Migraine Community!

     

    Those attacks sound very scary - for both you and your wife. It really sounds like it is time to see the expert who handles Migraine and headache disorders. That doctor would be a Migraine specialist. You see, while a neurologist may be a fine doctor, it is hard for them to be experts in any...

    RHMLucky777

    Read More

    Hello, and welcome to HealthCentral's Migraine Community!

     

    Those attacks sound very scary - for both you and your wife. It really sounds like it is time to see the expert who handles Migraine and headache disorders. That doctor would be a Migraine specialist. You see, while a neurologist may be a fine doctor, it is hard for them to be experts in any one area because they treat so many different conditions like MS, stroke and epilepsy. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

     

    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 there, go to the Migraine home page and look on the left hand side where you'll see a row of boxes. The Forum box is at the very bottom. Click on it and scroll down to the bottom of that page, and you will see the log-in spot. 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. Under the Find, Manage, and Connect tabs on the left side each page, you’ll find a wealth of information – educational articles, tips, quizzes, workbooks, support and advocacy information, and more.

    Do you have questions about Migraine? There are three ways to get answers – through our Ask the Clinician column, in our community Question and Answer Section, or through our forum.  Just go to our Migraine Answers page HERE

    Our email newsletter will help you stay up-to-date on Migraine and headache news and new information published on HealthCentral's MigraineCommunity. To receive our newsletter, click the “Sign up now!” link in the navigation bar across the top of our site pages or simply click HERE.

    Welcome again,

    Nancy Bonk

    Health Guide
    HealthCentral's Migraine Community

    PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

     

     

  • Anonymous
    janee walters
    Jun. 07, 2012

    I too suffer from them! One word of advice many many ER doctors dont even know what that is. I recently after 53 yrs discovered a 14mm hole in my heart-and it was a study that fixed the hole and altho it was a bit of a pain with diaries appts etc it seems to appear the hemiplegic migraines have almost disappeared! I still get facial drooping and mild headaches...

    RHMLucky777

    Read More

    I too suffer from them! One word of advice many many ER doctors dont even know what that is. I recently after 53 yrs discovered a 14mm hole in my heart-and it was a study that fixed the hole and altho it was a bit of a pain with diaries appts etc it seems to appear the hemiplegic migraines have almost disappeared! I still get facial drooping and mild headaches but nothing like what I had. and btw I was a RN for 27 yrs and treated for chronic headaches cluster classic common and hemiplegic since age 14. Just a suggestion to get "the bubble" test t see if she has ahole there-good luck!