Migraine with Unilateral Motor Symptoms (MUMS) and Hemiplegic Migraine

[@TheRockInnRobin]

It’s me hi! I’m the rare type where I never experienced anything visual until my late 40s. I haven’t been able to work successfully in 5 years now. The auras are all face, arm, leg, slurred speech since my late 20s. I don’t have the severe headache anymore as long as I avoid all modern lighting. Tinnitus has been permanent for 3 years. If the confusion is the sign of things to come, I’m going to need a caregiver. I couldn’t figure out how to get my cat food out of the car. I’ve already managed to accrue a slap tear in my shoulder from falling. I’m on my 5th time filing for SSDI and super migraine needs to be added to diagnostic coding and the SSDI blue book. The stigma needs corrected for us rare sufferers.

[@RDHayes]

I have familial hemiplegic migraines that last for days and one time I had them for four months with no rest in between. The doctors couldn’t figure out how to stop them. I was scared and in pain. I’m coming off to of one that started almost a week ago and I still feel weak, nauseous, and my head hurts. I was running a horrible fever with this one and couldn’t talk. My doctor said that if I go back into one that presents with severe pain for more than four days, go to the hospital. I’ve spent thousands of dollars on treatments that only work for a short time. I’ve lost jobs, homes, vehicles, friends, and family time due to them.

[@TheRockInnRobin]

Same! Welcome to hell, right? I haven’t been able to work for 5 years and the crap we have to put up with is beyond comprehension of 99% of people. ADA won’t cover accommodation either.