Hemiplegic migraine

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?

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

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?

Hi @hemichill, and welcome to Mayo Clinic Connect. I moved your post here where others were already talking about hemiplegic (HP) migraine. I did this so you'd have a group talking about similar topics who might discuss your HP migraines and the violent body thrashing you experienced recently during an HP migraine attack with the inability to speak for an hour.

Hoping others here in this chat can talk about whether they've had their migraines turn into a scenario like this before, such as @eastbaydave @loupy @aggie82 @sandra777111 and others. I'd also like you to meet @hopeful33250.

Have your doctors suggested any potential preventative options for the violent body thrashing during an HP attack? Did you have any injuries from this incident?

I am 33 and started having Hemiplegic migraines in 2017. They are non familial and have completely taken over my life. I’ve take every med possible. I do Botox to help severity but not amount. Recently during a HP migraine attack, my body started violently thrashing. Arms just flailing and no control. I was conscious, but unable to speak (aphasia) or see very well. It lasted about an hour before administered benzodiazepine in ambulance, Dr. is calling it Atypical Migraine. And if I feel it coming on I try to take lorazepam quick enough or my parents have to hold me down until it kicks in. HP migraines or not, has anyone had their migraines turn in to something like this out of nowhere? I have been diagnosed with epilepsy since 13, but they are controlled. Nor would a person be awake for an hour during a seizure. I’m just looking for people going through things like me. It can be very lonely. I am seeing a line up of doctors.

Hey eastbaydave!
Wow it sounds like you’ve been going through it! I had a few bad headaches with my situation but mostly the neurological symptoms. If you haven’t yet, you might want to find a good neurologist and I recommend getting started soon on a preventative medication. Of course they may have to control your pain with other meds. But a good doctor will start you on something to prevent the attacks. When we were trying to see what would stop them, they put me on several different ones. I don’t remember what the side effects were that made me switch so often, but finally the Aimovig worked for me and the symptoms stopped. That was 4 years ago and here we are. I’m actually feeling much better than last week. I’ve been trying to stay away from triggers (look up the 5 “C’s”) and I think that has helped a lot. Other meds that I was on were Quilpta, Ajovy (injectable) and PO Nurtec, which did not work for me.
I really hope you start getting relief and can go back to work soon! I was out of work for three months until the meds started working well.
Gods bless!!

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.