Stroke like sx for headaches/complicated migraine dx

Hello everyone first time here. So about 4yrs ago I donated a kidney and 6 weeks later my sx's started. I had migraines as a kid but not to this severity. So I start to get a tight face and then face goes droopy and depending on the headache it could go whatever way it wants! I sometimes lose all my right side sometimes my left side but majority of the time it affects my right side, where I have to have help walking and then the headache sets in, and it just doesn't let up some days. Sleeping helps as I don't feel the pain but then I wake and the pain is back, numbness can last anywhere between a couple hrs to a week just depends. I was on Botox and meds but I got pregnant and lost, I don't want to go back on meds due to trying to get pregnant again. My neuro doc says they are complicated migraines, having a hard time finding new neuro doc as they are out 6-1yr for apts. I have tired diet changes, cut dairy out completely. I have seen naturopathic doc, didn't get much from him. Chiropractic i have done with some relief but not much. I am just tired of living with constant headaches. Looking for anyone with similar headaches or things they have tired.

7 Replies

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  • Hi yes I have this...well controlled now but had a history of this kind of migraine. It was the result of auto immune disease. Do you have other health issues going on?

  • No other issues, only thing big health history is I was in a car accident and run over but that was almost 10 yrs ago. What auto immune dx is yours bc off.

  • Well mine is Behcet's disease which is a form of vasculitis. There are various forms. But I definitely had other health issues going on. Muscle cramps weakness...gastro problems and joint pain.

  • Thank you

  • Hi, I suffer from this too. It was very annoying the first time it happened as docs thought I had a stroke or seizure. They did tests and scans and stopped me from driving for 6 months as a precaution but found nothing! It wasn't till it happened again 2 years later that a doc from A&E referred me to a neurologist who diagnosed me with hemiplegic migraines.

    migrainetrust.org/about-mig...

    But even after the diagnosis, its hard to find a treatment that works. My GP keeps trying drug after drug- they all stop working after a month or two. And I still get headaches everyday. I bought an icepack that ties around my head that I use everyday and that helps for a little bit. I also read somewhere that acupuncture helps too, so I'm looking to try that too....at this point I will try anything really.

  • I have thought mine where and even my mom thought they were hemiplegic migraines, but neuro doc told me she didn't want to as the tests for it are genetic testing and would be a fortune in costs!!!!

  • Yes, me too, my left side freezes totally. I have what is probably an autoimmune disease as well (endometriosis) and the two are clearly linked. I'm sorry you're having so much trouble finding answers - sadly, so am I!

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