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Long time migraine, survivor I guess.

  • By hawkinse

    Hey, I’m new to this so if I do something wrong let me know. I have had migraines since I was a child. I’m 37 years old now. I’ll make my hystory brief. One day out of the great wide blue began having Optic Nerve Migraines while in a drawing class. It was intense and has been for the last 10 years. I could always tell when I was getting ready to have a regular migraine but there is 0 triggers for my optic migraines. 1 year ago I had a bad 2 day run of the optic variety and none of my usual remedies helped. I couldn’t do anyting but lay down. Something broke in my brain during that episode and I had a stroke. I’ve recovered well. I have minor weakness in my right side. My handwrghting is atrocious but it wasn’t great to begin with. It’s been almost a year since I had my stroke and I just recently had my first optic migraine since. It scared the crap out of me. PTSD I guess. My doctors don’t know why I had a stroke, I’m 37 years old, healthy and active. Has anyone else had something like this happen? I know it’s migraine related, I’m positive it is but my doctors won’t listen to me. I have a heart monitor in my chest now. Surprise surprise, my ticker is perfect.

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  • By Nancy Harris Bonk Moderator

    Hi hawkinse,

    Welcome to the Migraine.com discussion forum and thank you for sharing your story with us. I’m happy to hear you are recovering nicely from the stroke. That must have been scary!!

    I’d like to mention getting an accurate diagnosis is extremely important as it will allow us to learn all we can about our condition (s) and ensure we get the proper treatment. There isn’t an actual diagnosis called ‘optic nerve migraine’ according the the International Headache Society’s International Classification of Headache Disorders-lll or ICHD-3. I wonder if migraine with aura would be more accurate.

    Migraine with aura can have a range of scary symptoms including but not limited to numbness and tingling, visual and sensory aura, trouble concentrating and speech difficulties. We have more on this here; https://migraine.com/migraine-types/migraine-with-aura/.

    Something to keep in mind is having migraine with aura can increase our risk of stroke. You can read more about that in these links; https://migraine.com/blog/stroke-migraine-with-aura-prevention/ and https://migraine.com/living-with-migraine/migraine-and-stroke/.

    I would encourage you to seek out the expertise from a doctor who is board certified in headache medicine, rather than a general neurologist. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as epilepsy, stroke, Parkinson’s, multiple sclerosis and others. A “true” migraine/headache expert may not even be a neurologist but devotes their practice to headache medicine. I’m currently seeing the 5th true expert and can see some progress. When you get a chance, take a look at this information on how these doctors are different and how to find one: http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps! Please keep me posted,
    Nancy

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