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migraine encephalopathy

I have had migraines since the age of 12 and am now 51, over the years I tried all medications like anti-epileptic meds, abortives, anti-inflamatories, migraine meds, preventatives to no help what so ever nothing even touched these.

Eventually I saw a neurologist who tested my spinal fluid in which it was high in protein, eegs were questionable and I didn’t respond to medications.I would have to go into emerg and get demerol for the pain and they would try all things to stop the “runaway migraine that lasted for days and weeks. Eventually with these tests he concluded that I had what is called “migraine encephalopathy” a rare head disorder in which there is no cure or treatment and that explained why nothing ever touched the pain.

The pain is everyday and worse with activity so I am limited throughout the day. Foot ball players also get this disorder due to concussions. 1% suffer and it may even be mito-chondrial in nature so I wanted to share this incase others suffer and don’t understand why nothing works it may not be a simple migraine. A home pain management program is now in place for me so that I do not have to go to emerg every 12 days for help.

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  • Katie M. Golden moderator
    5 years ago

    I’m sorry that you’ve dealt with this for so long. I’m glad you’ve been able to find a pain management program that works for you. It can be so difficult to deal with the pain. Finding alternative ways of coping has given me a way to feel in charge of my health.
    Good luck to you and thank you for sharing your story!

  • Freda author
    5 years ago

    Thanks Katie for your reply.In most situations people find a treatment but in my case I did not respond to anything that meant there was more to it then just a migraine.I am hoping that this morphine spray (when absolutely necessary) will at least keep me out of emerg and able to cope at home.Are there on line support live chats that take place? It would be nice to connect with people from time to time.Thanks again, Freda.

  • Katie M. Golden moderator
    5 years ago

    Freda, does not currently have on-line chat rooms. We do have a Forum section (under the Community tab) where you can ask questions and interact with other Migraineurs.

    One of our writers, Diana Lee, hosts an online chat once a month on her blog

    I also know of a 24/7 Migraine chat area, however I have not actively participated, so I can’t vouch for it. Here’s the link:

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