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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