Looking for Others with Hemiplegic Migraines

SO happy to find fellow sufferers here! I've had severe migraines since I was 14. They worsened with puberty and triptans only made them worse, like acid in my skull. They relented during pregnancy, only taking a T3 here and there. A few years after birth, they came back with a vengeance. The vomiting made the pain worse, which made me puke more. By the time I'd get to the ER, I was so dehydrated and face was swollen. When I explained I couldn't have triptans, they treated me as drug-seeking. My neurologist gave my Butalbitol and Zofran, which seemed to help. Once cell phones with cameras came around, I finally got a picture of the facial droop and she was able to correctly diagnose and treat with botox. Yet insurance stopped paying for the injections because I wasn't having emergent episodes anymore. Now I'm on Cymbalta, propranolol, and Topamax, which keep them less frequent and severe. When I do have to go to the ER, it's a pain in the ass to explain the facial droop, they still have to check for stroke tho, especially since I had 1 in my early 20s.

I’ve had HM’s for three years. Getting diagnosed was the absolute worst. Now, I’ve been episode free for 9 months taking Zonisamide, CBD gummies, and a super strict bedtime schedule. Going through the process was horrible. My husband was so terrified to leave me alone, because I kept having these episodes with no apparent trigger. A lot of them happened when I was asleep. Some happen when he was at work and he would come home and find me laying on the floor. I would never have any memory whatsoever of what happened during episode and I still don’t.

Hi! I have hemiplegic migraines and after extensive tests with my neurologist, turns out I have epilepsy and cerebral vascular spasms which are causing mini-strokes (TIAs). I know that's not the same for everyone, but I would encourage going to a neurologist! So far, I haven't found medication that has worked well, but I'm only a month in of trying new meds. Any meds work for yall?

I deal with them myself all the time and had to leave the job I did for years because of the stroke like symptoms and now I sit here and wonder what I will do for the rest of I’m working career as I was a certified medical assistant…

I deal with them all the time, you are not alone

Yes I have chronic HM and occipital neuralgia. Getting my hormones fixed through birth control has helped a lot with HM. I’ve taken Ajovy for months but haven’t noticed much difference. I take Sumatriptan and Advil when I get a HM attack and try to deep breathe and keep my body as calm as possible. I pray you all feel better soon.

I went to a neurologist a few years ago like 7 and she put me on propanol. I have HM few and far between. But…when I do get them, they scare everyone who did not know my history. I had one at work where the headache came suddenly and then I couldn’t speak for awhile. I had tingling/numbness in face esp around the lips. Then I go to the ER to make sure I’m not having a stroke. Afterwards, I’m exhausted and sleep long and then I’m fine. Weird stuff.

I believe my hemiplegic migraines are mostly brought on by stress, not eating, being tired.

This is information I was given by a Nuerologist on hemiplegic migraines. https://www.bing.com/fd/ls/GLinkPing.aspx?IG=843281203B9845869F7FCD58AB0277DA&&ID=SERP,5134.1&SUIH=P-sEf5jDkMR7x7qSg0ai0A&redir=aHR0cHM6Ly9yYXJlZGlzZWFzZXMub3JnL3JhcmUtZGlzZWFzZXMvaGVtaXBsZWdpYy1taWdyYWluZS8 https://healthunlocked.com/fndhope/posts/132216055/fnd-and-hemiplegic-migraine-july-2015

I've experienced these for a few years now,after having "normal" migraines with aura since I was a teen. Afterthe birth of my third child I started having them multiple times a week, with numbness down one side and tingling in my face in addition to the aura and blindness in one side. Very scary! My PCP switched me from Imitrex which seemed to be making things worse (and I read somewhere can cause strokes with hemiplegic migraines, but I don't know if that's true or not!) to Topamax for prevention and Ubrelvy for acute migraine onset. It has been much better and I only have them once or twice a month now and they are significantly less severe. However, I do know some people have a hard time tolerating Topamax.

Have hemiplegic migraines*

Hi! So I’ve had hemiplegic migraines (complex migraines). For about 3 or so years now. I tried emgality but had a not so great reaction to it. I used ubrelvy for a while then my body adapted to it so now I use Nurtec ODT and it’s amazing! I can still use ubrelvy as long as the times are far apart.

Hi there. I’m here doing research on hemiplegic migraines too. Love to chat about this.