migralepsy diagnosis

Theresa Community Member October 22, 2009
  • My name is Theresa and Ihave migralepsy,it is a condition where when you get a severe migraine you have a seizure which can last up to 5 minutes,and you have no clue what has happened to you.Ihate having this because i can"t drive or do any of the things i use to do.
7 Comments
  • Anonymous
    bb deville
    Jan. 21, 2010

    Hello Taresa, my niece is 7 yrs old and has suddenly had seizure and describes severe headaches before and says she suffered with headaches for the past few years but they got progressively worse and then she began having seizures. i just wanted to ask if your experience was similar?

    • Theresa
      Jan. 27, 2010

      Hello,B.B.Deville, sorry it took me so long to answer you, but i have had a bad week. does your neice when she gets these headaches and then has a seizure does she pass out or does she shake all over, the reason why i ask is because i have what they call petit mal seizures where when i have the headaches they get so severe that i pass out for at the most 5...

      RHMLucky777

      Read More

      Hello,B.B.Deville, sorry it took me so long to answer you, but i have had a bad week. does your neice when she gets these headaches and then has a seizure does she pass out or does she shake all over, the reason why i ask is because i have what they call petit mal seizures where when i have the headaches they get so severe that i pass out for at the most 5 minutes and as i come to i start to shake a little.and then afterwards i am so weak i can't get up for a few minutes. by the way is she taking anything for it.me personnally i'm taking topamax and neuroton.it seems to help for awhile,but not all the time. hope to hear from you again and i hope your niece gets better.                                          thanks theresa

  • Nancy Harris Bonk
    Oct. 22, 2009

    Hello, and welcome to MyMigraineConnection.com!

     

    I'm sorry to hear about your recent diagnosis. Migralepsy is a Migraine with aura that triggers a seizure and is not very common. I have copied the criteria from the  International Classification of Headache Disorders 2nd Edition (ICHD-II):

    Description:

    A seizure triggered by a migraine aura....

    RHMLucky777

    Read More

    Hello, and welcome to MyMigraineConnection.com!

     

    I'm sorry to hear about your recent diagnosis. Migralepsy is a Migraine with aura that triggers a seizure and is not very common. I have copied the criteria from the  International Classification of Headache Disorders 2nd Edition (ICHD-II):

    Description:

    A seizure triggered by a migraine aura.

    Diagnostic criteria:

    1. Migraine fulfilling criteria for 1.2 Migraine with aura
    2. A seizure fulfilling diagnostic criteria for one type of epileptic attack occurs during or within 1 hour after a migraine aura

    Comment:

    Migraine and epilepsy are prototypical examples of paroxysmal brain disorders. While migraine-like headaches are quite frequently seen in the postictal period, sometimes a seizure occurs during or following a migraine attack. This phenomenon, sometimes referred to as migralepsy, has been described in patients with migraine with aura.

     

    Migraine specialists are the best choice to treat the more rare forms of Migraine disease, like Migralepsy. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the 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 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

    • Roz
      Roz
      Dec. 20, 2011

      We have been exploring all alternatives for our 38 yo daughter who has recently been diagnosed with migralepsy.  She had a blood clot before delivering our grandson (who is fine) 6 years ago and has suffered from severe headaches and 3 years ago the seizures started. She has had 3 grand mal seizure and many other smaller seizures or maybe TIAs.  We...

      RHMLucky777

      Read More

      We have been exploring all alternatives for our 38 yo daughter who has recently been diagnosed with migralepsy.  She had a blood clot before delivering our grandson (who is fine) 6 years ago and has suffered from severe headaches and 3 years ago the seizures started. She has had 3 grand mal seizure and many other smaller seizures or maybe TIAs.  We will take her anywhere to find the best physician. We originally thought of Mayo but now think that Johns Hopkins would be best.  There is a female doctor, Dr. Tracey Milligan, who wrote an article on migralepsy with Dr. Bromfeld (deceased) but she only practices one day a week at the Brigham and is booked until June.  Also, I did not get the feeling that a Dr Milligan and a team of doctors would see her.  Help!!! Any suggestions would be appreciated.

    • Nancy Harris Bonk
      Dec. 20, 2011

      Hi Roz,

       

      Did you take a look at our Patient Recommend Migraine Specialist list yet? That would be the place to start.  

       

      Let me know what you think, ok?

       

      Nancy

    • Roz
      Roz
      Dec. 22, 2011

      Nancy,

      Thank you for responding. We are at our wits end.  She feels worse and worse each day. Today was an especially awful day and I was concerned she would have another seizure. I did review the site and found Dr. Lee Peterlin at Hopkins.  I have sent an appointment request form with some information (they should receive on Mon or Tues...

      RHMLucky777

      Read More

      Nancy,

      Thank you for responding. We are at our wits end.  She feels worse and worse each day. Today was an especially awful day and I was concerned she would have another seizure. I did review the site and found Dr. Lee Peterlin at Hopkins.  I have sent an appointment request form with some information (they should receive on Mon or Tues depending on their holiday) and they said they would review and get back to me.  They said it was very difficult to get in to see her. Then Dr. Tracey Milligan at Brigham and Women's only sees patients once per week and wasn't available until June.  Is there any way to get an appointment as soon ASAP for a complete review?  Thank you so much for any help you can provide us. 

      Roz

    • Roz
      Roz
      Dec. 24, 2011

      Nancy,

      We now have an earlier appt at BWH.  Want to keep our options open with Johns Hopkins.  Any suggestions?

      Roz

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