Hemiplegic migraine

Hi Loupy. My, still difficult to think,… I got Covid 1st then all the things you describe happened to me. Drag my foot. Can’t think, talk. Shake. Nothing mild about it tho. I’m glad you had a break and sorry they’re coming back. The terror in the beginning when I had no idea what was going on. 3 times 1 day I figured I was dying. The 1st 2 I figured what’s the point? I’d rather go here than at the hospital. The 3rd I went to ER. Guy just said not even looking up, you’re not having a sroke. That’s it. Ok, well, that’s good. Gave me a gabapentin. I can’t imagine what it was like to continue work. I was going thru this everyday multiple times. I couldn’t leave my room. Just thinking of that is terrifying. I had no idea what was happening. It’s worse now but at least I know and I learned, for the most part, not to panic.
Good luck. Haven’t been here long and it’s still uncomfortable sharing but not as rough as keeping everything inside.

Welcome to Mayo Clinic Connect, @loupy. I wanted to let you know I moved your post here to an existing discussion on hemiplegic migraine so you could talk with others such as @guderianj @azza1 @vahank @danralph and others.

I had been diagnosed with Hemiplegic migraines years ago when I had stroke-like symptoms that landed me in the ER several times. They didn’t last long and I rarely got a headache. Until about 2 weeks after I took the COVID vaccine. I noticed the symptoms of light-headedness, forgetfulness, episodes where I couldn’t speak or compile sentences and others returned. As I was waiting for testing with my neurologist, a full blown attack happened and I was put into the hospital overnight for testing. That’s when I was actually diagnosed with hemolytic migraines. I was told I could not drive or work because the attacks made one side of my body go numb, or I’d go blind in one eye or I would be unable to focus or speak correctly in a conversation. They tried different migraine meds and I went back to work 3 months later. I got better and got off the meds. But now I’m getting some of the symptoms again. I wake up tired with a swoosh feeling in my head, mild ringing in my ears, brain fog and my friends and coworkers noticed I say some off the wall things during the day. I’m trying to control the symptoms so I don’t get a full blown attack like I had years ago. I read Magnesium and Vitamin B2 are good supplements to try. Also stay away from ingesting the “5 C’s”. Anybody with a similar problem out there? What have you tried?

Oh, I also meant to ask about imaging. I'm fully assuming you have had imaging done. One of the treatments that was brought up to me by my neurologist is called a spinal blood patch. I have had that done after I had a spinal tap (lumbar puncture) that resulted in a spinal headache. I think this treatment is a one and done, but I'm not sure. Anyway, just wanted to mention that as well.

I was diagnosed with Hemiplegic Migraine in 2011. I was actually bed bound for about 4 months. I have had multiple episodes and they are terrifying. The more I have the better I get at feeling them come on and getting some place safe (preferrably not in my car). My first one happened as I was driving to work in November 2011. I ended up crossing three lanes of traffic as I was losing feeling on my entire right side. By the grace of my higher power I did not cause an accident. Over the years, as I have tried multiple treatments for my chronic pain, migraines, and fibromyalgia, the hemiplegic symptoms have decreased in frequency. It sucks that there isn't really a treatment for them too. Just life style changes. Best of luck to you! You are not alone!

hey there, i've had hemiplegic migraines for years. keeping a trigger journal (sleep, caffeine, weather) helped me spot patterns. i also found some deep‑dive posts about aura + weakness over at The Migraine Network – might be worth a look if you’re digging for ideas. hope everyone finds relief

Hello @asedano81 and welcome to Mayo Connect. I appreciate you sharing your experience with Hemiplegic migraines. Your post points out just how debilitating migraines can be. It is good that you have some medications that help make this more tolerable.

How long ago did these migraines begin? Has this been over many years?

Hello

I have been diagnosed with Hemiplegic migraines.

Just this month I was hospitalized 2x back to back. My attacks are very textbook symptoms. I start with a tingling in my right hand then it slowly moves up my hand to a full-fledged numbness and keeps working its way on the right side of my body. My pain in my head is a sharp pain on the right side, usually in the front and then eventually as a time progresses it’s the entire right side. I suffer with slurred speech, not being able to form sentences, extreme confusion. My entire right becomes so dead like where I can’t lift my right arm. My right leg becomes nearly impossible to walk on. My attacks last generally for an hour and can come in clusters so I can get one or two a day if I don’t receive Medication for pain. My hemiplegic migraines occurred because I was about three weeks past due my Botox injections that I’ve been doing religiously for the past seven years every three months. This was the first time that I missed the exact date for injections just due to scheduling. When admitted to the urgent care I was put through a battery of testing because doctors believed it was a stroke since it mimics stroke like symptoms. In conjunction to my Botox I also tak le the injection that I self administer once a month called emgality to release the intense pressure that my head carries. It’s truly scary having thos type of migraine because I’ve been in public when it happens, and I have to go and lay down in the car or wherever I can because I can’t function for the hour or so. My head is always in a state of pain if that makes sense. It’s just tolerable with the help of these medications. prior to botox I was getting attacks where I would not be able to get out of the bed because within 20 min or so of waking I would get hit wi my migraines making it just extremely debilitating not being able to tolerate anything lights, sounds smells pretty much everything. Life just becomes just too loud and too bright and too disturbing so I normally have to shut everything out and cover my eyes having no sound and just try and go to sleep, which is nearly impossible when you have that kind of severity of head pain.

I had a traumatic brain injury 27 years ago. After physical therapy, occupational therapy, chiropractic and neurologist as part of my team. This were dibillatating. Than for several years noo migraines? Now my migraines are 17+ a month with severity between 7-10 pain levels with all the symptoms. In October of 2024 I had a stroke. I am just 63! I eat healthy, was physically active, love my job, living in paradise, Hawaii. Started having symptoms, MRI's CAT SCANS, followed by family Dr., Neurologist, and neurologist headache specialist. Diagnosis of hemiplegic migraines yesterday. The symptoms are in alignment with what I am currently experiencing! Please HELP
Warmest Aloha,
Sandra

Aimovig seemd to work some but insuracne quit covering it. I went to a holistic nuerologist that gave me excersises to to, they helped some. Other than that noe of the doctors have been very helpful. I have had scans and MRIs and they say they do not see anything.