r/HemiplegicMigraines

Hi everyone,
I’m posting because I’m trying to work out whether anyone with hemiplegic migraine has experienced anything similar to what’s happened to me recently.

Quick background: I developed severe ME/CFS in 2011/2012 as a teenager and became extremely severe for years. (Following concussion, and a viral infection) I lost the ability to walk completely between 2012–2019, was bedbound, couldn’t dress/feed/wash myself , couldn’t tolerate TV/light/noise properly etc. Over time with pacing, rest and just time, I improved massively and regained the ability to walk/live independently again, although I’ve still had chronic fatigue, autonomic symptoms and migraines.

For years my migraines were mostly weather/storm related, but over the last couple of years they became chronic and I started feeling like I was permanently in a migraine state.

Then in April this year I had what doctors think was a hemiplegic migraine. Sudden left sided weakness/limp, neurological symptoms, severe photophobia/phonophobia etc. during this attack I also experienced muscle spasming in the left side when exposed to light and lost the ability to walk without holding onto something for about 2-3 weeks afterwards. I also had moments of eye rolling and dipping in and out of consciousness.

CT/MRI/bloods were clear.

Since then my nervous system has felt completely different. My light and sound sensitivity have gone through the roof since that attack. I can’t cope with shops/supermarkets now without feeling like I’m going to pass out. TV motion and bright lights became really hard to tolerate.

Then in May I started having seizure-like attacks. They are VERY visually triggered. Watching TV triggered the first major one. I ended up in hospital after repeated episodes involving:
eye rolling/fluttering
lip smacking
reduced awareness/unresponsiveness
facial twitching/spasms
shaking afterwards
feeling extremely clammy/spaced out after
Hospital lights repeatedly triggered attacks, including overhead lights and doctors shining lights in my eyes. They could basically provoke symptoms by removing my sunglasses and turning lights on.
Routine EEG captured dizziness and left facial twitching but showed no epileptic correlate. There was intermittent posterior/temporal slowing but no epileptiform activity. Neurologist is now leaning toward non-epileptic/dissociative attacks rather than epilepsy, and has referred me to a psychiatrist although I really don’t feel this is mental health related.

I’m also waiting on a longer EEG.

What I’m wondering is whether this could all still be part of some kind of severe hemiplegic migraine, because it all escalated massively AFTER the hemiplegic migraine in April.

Has anyone here had:
severe sensory/light-triggered neurological attacks?
seizure-like episodes with HM?
prolonged issues after a hemiplegic migraine?
extreme visual motion intolerance / shops becoming unbearable?
Non epileptic attacks triggered instantly by bright light?

Would really appreciate hearing from anyone with similar experiences or anything that helped, this is exhausting!

i want to live alone so badly. i have in the past and loved it but never when ive had such bad daily migraines. im trying to leave my ex partners place, hes helped caretake for me, but i also cant stand his shit anymore. there are long periods where i am in the apartment alone and struggle so badly to get up, yet im scared that i cant go back to living alone considering my daily debilitating pain.

do any of you live alone and if so, how? what specifically do you struggle with, what helps?

Just spent the past couple days in the hospital after going to the ER with head pain so severe I'd been up for 2 days because I couldn't stand for a pillow to touch the back of my head. I went in after my face started drooping and could no longer walk unassisted because my entire right side became so weak. CT Perfusion scan and Brain MRI were both normal.

I've suffered from "regular" migraines since I was in a bad car accident as a teen. I guess they have now evolved into this exciting new territory. 😒

I am super limited on meds I can take. I cannot take any kind of NSAID because I have a platelet disorder that keeps my platelets very low all the time. They've been consistently in the 40-60K range for a while now. I have EXTREME sensitivity to pretty much all meds, even OTC. They made me make a decision on what I'd allow them to give me before discharge. I absolutely hate Compazine, so I refused that. It makes me immediately go berserk. I agreed to a cocktail of Tylenol, 12.5mg of Benadryl IV, and 12.5mg of Phenergan oral. Just that half dose of IV Benadryl sent my body into immediate vomiting, redness, uncontrollable shaking and crying, followed up by major aggression and agitation. This is what nearly any drug I'm given IV does to me.

The neuro I saw at the hospital was not impressive, but he called in 2 different doses of the injectable Emgality after telling me my insurance will probably refuse it. 🤷🏻‍♀️ I am pretty terrified to inject anything into myself knowing how badly I react to meds. Either I go off the deep end crazy with seeing flashing lights and brain zaps, become extremely aggressive, vomit, or have redness, itching and throat swelling with just about anything.

I know its a long shot to find anyone out there that is as sensitive to meds as I am, but I'm hoping someone could offer me some advice on what has worked for these types of migraines for people who are REALLY sensitive to everything.

Kinda background TLDR. We’re still doing the genetic test here this upcoming month, to find out which sporadic gene I have. But I have just gotten the HM diagnosis due to the severity of the presentation of my ER trips have been the last two months into my local neurology departments.

Long story short. In March I had two severe HM’s in one week that had me on stroke watch in the ER. In April, I had 3 HMs in 6 days back to back every other day in and out of the ER twice on Stroke Watch - that’s the Diagnosis. All clear, MRI etc.

Edit for clarity: mine present as full one sided facial droop, entire loss of speech, and loss of ability to communicate for up to a day.

Im an extremely voracious reader, I have been all my life. I read 90 books in 2023, 98 in 2024, and broke my record of 243 in 2025. I love reading. It not a brag it’s just showing how drastic this is.

I started noticing this pressure headaches in January building up to the HMs in March. In january I was reading my usually 5-7 books a week. My reading started slipping because these unusual pressure pains and spikes in my head. I started becoming unable to focus and just not reading.

When the HMs started happening I noticed that I couldn’t read. Like my concentration and focus was shot. Of course it presents like a stroke so they test like a stroke and do the full comprehension tests etc. But the further along I got and the more often that these HMs happen.. the more I notice, I’m not recovering like I thought I would.

I took me 3 weeks to finish a physical reading book I had. I couldn’t focus on it and it was during this time I had those triple attacks. It kept getting worse. I finally finished but it was a push. I keep trying to read more but I find it difficult. I read on my kindle but I track how long it takes and it takes me 2-3x as long to read than it did before.

I know for some this may seem not as bad.. but for me, reading has been my whole life. it’s all I’ve done since I was a child and could read. it’s my escape. it’s what got me through these first attacks and made it bearable. So struggling to read more than a book a week? it’s heartbreaking. it so frustrating and I feel like my brain is just wrong.

I was going to bring this up to my neurology appointment I have anyway.. but does anyone have advice? maybe just something that comforted or helped you when you first found out or it happened to you? I’m so new.. I don’t even know exactly what’s even happening to my brain. I don’t have resources or anything right now. Just meds, kinda.

Hi, everyone. I am new to the group, so forgive me if this is redundant, but this one is scary and I just want to know if anyone else can relate.

I will tell you my story and I am not sure all is connected to hemiplegic migraine, but maybe it is.

When I was 3, I had seizures and convulsions due to what they said were my extreme fevers. I not only have a rare migraine, I have a rare gene for inflammatory response, and a rarer condition that is basically "Bubble Boy" Lite and I can't fight off infections. I have immunoglobulin (plasma) infusions that I do at home weekly.

Anyway, at age 12, I have a tbi (traumatic brain injury) and I get "head" migraines for several months after this and they are brutal, but seem to go away mostly.

By 23, I start noticing I am forgetting things and start having trouble reading books as I struggle to understand the words and forget within moments what I have read.

Not long after, I get my first brain zap as I don't know what else to call it, but it feels like lightening hits my brain.

After that I start to struggle with more brain fog, double vision, blacking out and this becomes chronic for forever and I get passed around by doctors who either think I am losing my mind and/or don't know what to do with me. I also, at this time, get a "head" migraine that lasts 6 months without relief.

I deal with these symptoms throughout these years because nothing helps and I just have to.

At about age 40, I had been dealing with all of this over the years and then one day, I can't make sense at all of what people are saying to me and they can not understand me because my left side of my face falls and I am slurring my speech.

I can't stand long on my own and I begin blacking in and out. I go to the E.R and no one can understand me and they are having to get me to stand. I am blacking in and out. Eventually, a doctor comes in and tells me that I had low sodium and what he calls a hemiplegic migraine.

I don't get referred anywhere, but I have issues with sodium sometimes so I think, "The sodium must have caused a weird migraine, I can stand now. Moving on." I didn't know what "hemiplegic migraine" meant.

I continue having severe blurred vision, brain fog, forgetfulness daily. That's life and no one has referred me to a neurologist. Headaches aren't common, but happen occassionally.

Years go by, I start having issues with my arm feeling disconnected. The bones and muscles and tendons feel disconnected. This is off and on. Then my knees start to do much like the arm. I have inflammation issues and arthritis, I think that I must be dealing with arthritis and getting older.

Then one day, while the double vision gets more intense, I get another brain zap ( like lightening in my brain and it is bigger than the last time). Very scary and hadn't happened in like 20 years.

Only a few days later, I can't use my arm to pick anything up. It is fully paralyzed.

I can't wear my wedding band because it weighs my finger down and I struggle to stand and walk at times as I do not feel stable. I start getting numbness in different parts of my body and the twitching/rolling starts to really get bad.

No headache, but it is scary, so I go to the E.R and within hours I get a pretty nasty headache.

This is when they tell me I have "complicated" migraine and finally refer me to a neurologist.

Neurologist tells me certain medications will cause me to have a stroke so I get put on 100 mg of metropolol, steroids, and Nurtec.

This is when my mother admits to me, in the winter of her life, that she gets ocular migraines which I have read can be connected to hemiplegic migraine.

4 months later, I am still dealing with weakness, though not as severe, in my arm and leg. I still can't wear my ring. The blurred vision is still not great, but better. Headaches or "head" migraines are few. The twitching has resolved in my face, but it is literally all over my body still.

The only thing that helps a little is doing redlight therapy. I am beginning to think this is permanent this time or maybe something worse.

The disconnection feeling has gotten better some, though.

Has anyone had the weakness this long or any of the other weird symptoms like feeling disconnected in their bones and muscles? Was anyone passed around for a while? Does anyone relate?

My wife has been diagnosed these HM about 6 weeks ago. She has them every day. I can’t imagine the pain she is going through. All I can see is how she no longer has quality of life. She is unable to do simple tasks or even spend time with our children. We currently have Kaiser and I don’t believe the Drs have the experience, expertise or knowledge to handle something like this. Especially when such a small population experience these migraines. Are there any recommendations for Dr that specializes in this and has specific experiences, up to date with any trials, medications and or specific papers written on this subject? Are there any specific health centers that could provide the best care? I understand it would be out of network possibly but I’m desperate to find anything or anyone that can help.

What Dr have you used or what recommendations can you provide for best treatment.?

Hi everyone!
I'm a 33 year old f who was diagnosed recently with hemiplegic migraine with brain stem aura.
I have a neuro who is trying to figure this out with me but it's disrupted my life significantly due to the length of my attacks (5 - 8 days) and recently I have had four back to back attacks with only a couple of days between.
I am currently on:
Nurtec ODT for abortive though it's been very hit or miss. Sometimes it works, sometimes it only lessens severity a tiny bit, others it fails completely.
Lesser & greater occipital nerve block with trigger point injection.
Toradol which has been very, very mildly helpful.
Starting Topamax for preventative tonight.

I've had such severe attacks that I can't hold a job and have been given until December 31st to find somewhere else to live. My attacks last days upon days and are completely debilitating to the point I will go days without eating more than a few crackers if I happen to have them within reach. I have filed for disability but because my attacks are so long I dont have "enough" of them to qualify (they told me my 4 back to back attacks lasting 20 days wasn't enough and I would somehow need upwards of 10 a month? Which isn't possible for the duration mine last lol). I've been fired from multiple jobs since I started experiencing these.

I am at my ropes end with how much these attacks have just completely ruined my life. What are some suggestions for anything at all that I could do to improve this?

How helpful has lamotrigine been in treating others here with Hemiplegic Migraine? I can't seem to find much on reddit about it except in the management of epilepsy.

I am currently on topiramate hoping to transition to lamotrigine because I feel topiramate wearing off in its effectiveness, and the side effects are increasingly outweighing the benefits. It's also not pregnancy safe, and I am hoping to grow my family.

Any experiences would be welcome.

Has anyone noticed a correlation between hemiplegic migraine attacks and cheap coffee? It’s been my experience that the likes of Folgiers, Maxwell House, and certain Great Value brands trigger them. Anyone else experience the same? I’ve read that they can contain mold and pesticides that can trigger an attack.

Hey guys, I’m wondering if anyone who suffers from HM has found any connection with their liver. I’ve had relatively mild hemiplegic migraines along with regular aura migraines for over half of my life and am sick of medications, bandaid treatments, etc. I’m sure I’m not alone here.

Last weekend I had what doctors think was either a hemiplegic migraine or a TIA. It was very severe and I’m still dealing with the effects and it’s leading me down a figure-out-the-root-cause route which I know is complex. BUT, has anyone here found they have elevated liver enzymes/any issues with their liver or sensitivities and also suffer from severe migraines? Or perhaps you spend/spent a lot of life in a particularly environmentally toxic environment (i.e. second hand smoke in the home, etc.) Again, I know it’s not a one-size-fits-all obviously but I’m polling to see if perhaps there’s something there?

Thanks in advance for your help!

39F, I've had migraines on and off for over 25 years now.

They were always associated with visual auras (zig zag) and unbearable headaches and nausea. Only triptans would help the pain.

Last year, around the same time, I had stroke like symptoms, sudden blind spot and unilateral paresis.

Nothing on MRI and they assumed it was either TIA or a migraine.

I had it again today, when my period is within a week and I recently had an IUD removed(had it for endometriosis). I can't take pills because of the headaches.

It started from my hand and moved up the arm to my face and tongue. I didn't have any beache last year but they asked my to take low dose spirin just in case.. eye checkup was completely fine.

Why has my migraine type suddenly changed? The neurologist is no help tbh. Idk what to do about this. The numbers had gone now but I still feel seird. Reading up on it told me that triptans make it wise. So if I do have a headache, what will help?

Why

Its scary AF, I line alone so Im scared that one day I might just die in my sleep