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Hemiplegic migraine

Posted by guderianj @guderianj, Jan 3, 2022

I was diagnosed with hemiplegic migraines and these present as a stroke (all the symptoms) but are not a stroke they are a migraine. They are caused by stress on the body physical, emotional, etc. I was posting to raise awareness and to see if possibly anyone else shares this diagnosis. It is rare disease and can be terrifying to not have information on a person to person level. I have read all the information the Internet had to offer 😂

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smokey1210 | @smokey1210 | 2 days ago
In reply to @eastbaydave "Thank you, Loupy. Been seeing neurologist 4 years now.Not many here (🙄in fact 1, but I..." + (show)
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Thank you, Loupy. Been seeing neurologist 4 years now.Not many here (🙄in fact 1, but I like him). Had every treatment, med etc available. Still on Topirimate, and Emgality. Have gone thru everything else including nerve searing, triptans, Amovig, Ajovy… and non medical approved nothing. Lists …Some made it worse . I’m retired. I live to paint. Thought I’d be out there everyday but appreciate it more when I can. Miss hiking and exercising. I see everyday hard others have it here and it can get real bad but I’m lucky, when I’m not feeling sorry for myself.
I posted this but it seems to have got buried. After weeks in a dark room I was forced to find something positive out of all this… or ‘break’
Drew my thoughts and surroundings and did a painting. I feel really weird posting it again… I’m not looking for anything except to show something that helped me…. Try to find a way out…
Thank you

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@eastbaydave
I was just diagnosed with my first HM. Have been under a LOT of stress recently. I have a long history of migraines, but never anything like this!
How do you know for sure if it was a HM vs. stroke?
How often do they recur?
How to prevent them?
I can't go to a dark room and recover. I take care of my Mother (90 y/o), which is a lot of my stress.
This has caused even more because I'm not sure that I was given the correct diagnosis!!!
I am so sorry to hear about your situation. That would be so depressing. I am also very proud for you, that you were able to turn it around into a very positive and productive situation! Your painting is beautiful!

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smokey1210 | @smokey1210 | 2 days ago

I was just diagnosed with my first HM. I have had migraines for many years, but none like this!
I keep wondering if I was correctly diagnosed? Perhaps it was really a stroke. ,(This was the initial diagnosis and treated with TNK) Maybe I'm in denial! Did you feel this way initially,?

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smokey1210 | @smokey1210 | 2 days ago
In reply to @susiesjourney "on 5/6/22 I had stroke like symptoms of numbness on the left side of my body,..." + (show)
Profile picture for susiesjourney @susiesjourney

on 5/6/22 I had stroke like symptoms of numbness on the left side of my body, recurring 6/2 for 2 weeks and again last Friday, 7/8. I was put into the hospital with possible stroke (I'm 54 yrs old) and all test were inconclusive except they found a PFO in my heart (google it) that they now don't think was the reason for my stroke-like symptoms. I'm in my 3rd month of diagnoses after multitudes of tests, hematologist, rheumatologist, neurologist a whole lot of acronyms came into my life i.e. MRI, TEE, EMG, CT, PFO.... Now yesterday my neurologist has indicated since I keep having symptoms, he's thinking maybe not a stroke and wants to look into the hemiplegic migraine. He sent me home with Nurtec ODT and told me to take it when I have symptoms and if it helps the symptoms we are on the right track. So, I guess I'm not technically diagnosed with it YET but in reading up on it today, all of the symptoms are all ME for sure. What tests did you all have to conclusively diagnose you with hemiplegic migraine?

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@susiesjourney
I have had NO tests! A stroke was ruled out post TNK and a negative MRI. That's why I am confused and frustrated
!
What type of testing/treatment should I have ?

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