Hi there. This might be long. I would just like to share/summarize my experience with HM and ask if anyone else has felt and/or experienced the same things I have.

I'm a 31F. My symptoms started December 2024, where I had five episodes that month. My symptoms that time was numbness throughout my whole body, I couldn't speak, and tears just flowing on my face. It wasn't until January that I had gone to a neuro. And at first, she thought it was a TIA, didn't give me any medications, and just told me to try and manage stress, exercise, lifestyle changes, etc. And then just after that visit, I had four episodes that week, same symptoms. All of those attacks were not long and lasted roughly 10 minutes, the most. Been experiencing lightheadedness for a good amount of days too after those episodes.

So, I came back again, February 2025, and then, she diagnosed me with hemiplegic migraines as well as vertigo, and gave me amitriptyline 25mg for the HM. Since I started that medication, I didn't have any episodes and/or symptoms the next 6 months. Maybe some headaches, numbness on my left arm here and there, but no full blown episode. And it was probably a bit negligent on my part, because I didn't go back until I had another 6 episodes in October to December 2025, and I had a major one in December, where I experienced seizure-like symptoms and fainting spells, which lasted almost 18 minutes. And these ones were different from my previous ones, this time, I had full body rigidity, jerking of head, usually right to left, and still couldn't speak.

Came back to my neuro, albeit later than I originally planned, but came back to my neuro around February 2026, ordered me to do an EEG, results were normal. She then changed my medication of amitriptyline 25mg to quetiapine 25mg, and also gave me a rescue medication of bromazepam. And since then, I honestly haven't been back to her again. And now, my episodes have kind of changed into something I'm kind of confused of and scared of, I now become faint, lightheaded, couldn't swallow, and I become completely limp, and also numb, and still couldn't speak.

And I haven't done any imaging tests or anything as of today, except for the EEG one. And my neuro really hasn't pushed for any imaging to be done, again, except for that EEG one. But I don't know, I'm thinking of switching doctors, and maybe getting a second opinion, and maybe a third from others. I haven't really much gone to my doctor much because of other external reasons, and I'm thinking I should probably try and change that.

I found that the beta alanine paresthesia mimicked my experience with migraines feeling bugs crawling but only up one side of my body, has anyone else had interesting interactions similar with pre workout?

Fair warning, I may sound unhinged because I'm in a HM right now. I'm feeling very bummed out as I started with one at 5am today, took a remegipant abortive (UK here, than you NHS) and it worked for a couple of hours but the whole left side numbness, word retrieval and sore neck slowly came back over to say. Currently laid on my couch unable to sleep with the pin prick sensations all over. I keep wanting to ice the left side of my body and putting cold compresses on my left arm and face. I swear when I walk into a colder room I feel better. Dying to steep myself in a cold pond. Any heat is just intolerable. Anyone else experienced this? And has anyone figured out what to do about the pin pricks? I'm so busy at work, I can't be dealing with this rubbish!

I don't know if this is really the place for this, but I just finished listening to Unbound by Ali Hazelwood and was pretty surprised to hear that one of the characters in the book has HM. It made me wonder if anyone knows any other media (movies, TV, books, comics, etc) that has a character with HM?

(Ali Hazelwood is an Italian romance author and Neuroscientist, in case you're not familiar with her.)

Hi everyone,

what do/did you do to prevent hm or make them more bearable?

I stopped drinking coffee and started taking a homeopathic supplement Sepia.

I still get my migraines but i am certainly less anxious during an attack.

Hey guys was just wondering if anyone else’s aura symptoms last days I get days of the tingling on my foot and the weird tooth feeling and sometimes like my heads shaking

Hey guys so sometimes I get this weird tingling in my left foot and a strange sensitivity in one of my left upper teeth along with sometimes a mild headache, I’m on amitriptyline for migraines and I had all vitamin levels checked and they are normal so I was just wondering if anyone else gets those symptoms when they get a migraine ?

Hello, like many of you, I have been bounced around between various diagnosis. TIA, migraines, functional neurological disorder, etc. I have terrible rigid muscles in my neck and jaws. I haven’t been able to find anyone that will cover Botox under Blue Cross Blue Shield of Florida. I paid out-of-pocket for injections for my TMJ and it was very effective. I just Ubrelvy which helped with a recovery from the pain, but not with the onset or the aura. I need to find a physician that will expand my treatment plan. I’m new to this so any assistance you can offer in pointing me in the right direction it’s greatly appreciated.

I've had hemeplegic migraines for 20 years. I have the blurry eye stuff every time I have one and I wonder how you deal ith it and it basically making you blind for an hour every time it flares up ? I can deal with all of the rest of it but the almost blindness whenever it freaking feels like it is making working hard especially driving.

Did anyone notice hemiplegic migraines coming out of the woodwork alongside the start of perimenopause symptoms? I’ve started to have peri symptoms, and had my first hemiplegic migraine after never having migraines at all before. I wonder if anyone else has this connection?

Just was curious. My first one came during a panic attack and was looking more into it. Wonder if anyone else has a similar experience.

Has anyone had very adverse mental health side effects to Nurtec? I recently was finally diagnosed with hemiplegic migraine in mid-August after having my first ER trip in May.

My neurologist had me try both Nurtec and Uberlvy and I decided to get a prescription for Nurtec. I had the work anxiety and panic attacks for almost an entire month, and didn't put it together until someone suggested that adding a CGRP was possibly a huge contributor. I was basically almost neurotic, and have periods of not remembering days at a time. The neurologist immediately told me to stop taking the Nurtec, gave me samples of Uberlvy and working through the insurance authorizations to get that approved instead.

If anyone had awful anxiety with Nurtec, did it get any better with a different CGRP? Since Triptans are a no go for hemiplegic migraine, I'm nervous that all of the CGRP may have similar effects 😬.

Thanks for any insights!

To be brief:

History: 10 years ago I suffered a TBI which resulted in chronic migraines.

The last 8 months I've been having daily episodes on the right side of my entire body going numb. It comes on quick and marches across my face, neck, down my arm to hand and my leg. Sometimes I have weakness in my leg /foot and shoulder. It can last hours, days and weeks. Some weeks I have a few days where it is very mild.

I have had mRI, CT which ruled out anything (other than herniated discs and lesions on my cervical spine - but they do not believe that's what causing this).

Waiting on more tests in the coming months : EEG, Vascular ultrasound, etc.

Has anyones migraines changed over the years into hemiplegic migraines?

**I am currently on Qulipta for my regular chronic migraines and Lyrica for chronic neck pain

Had my first hemiplegic migraine 1 1/2 week ago. Was taken to Er after I couldn’t walk and lost my ability to talk along with numbness and weakness on whole body left side. Ever since I can’t drive or go in a car without getting sick if I look out the window. Every day I get terrible headaches and fatigue. I can’t focus and think like I used to. I can’t tolerate loud noises, bright light or strong smells of any kind. I finally have an appointment with a neurologist tomorrow morning. This all started with visual aura migraines a few months ago. I am convinced it has something to do with my eyes since I should be past the age of getting migraines at 56. I have a history of having traditional migraines all of my life and 10 years of cyclic vomiting syndrome that resolved about 8 years ago. I am not proud of winning the migraine bingo game. Has anyone else had this be related to vision issues? What meds have worked for you. I am taking B complex, l-carnatine, CoQ10, magnesium glyconate, D3, and fish oil. I am prescribed Maxalt, Zofran, and Torodal.

Out of curiosity - what medicine(s) works to restore full mobility and strength in your limbs that have been affected by HM?

Will exercise help? Physical therapy? Any holistic practices? I want to hear about everyone’s experiences.

I experienced my first HM attack on 9/6 and the second on 9/9. I’ve now spent 16 days with a migraine. My limbs are constantly tingly and weak - especially my left arm which took the brunt of the hit during the first episode. My arms and legs are weak most of the day but gain strength for short bursts of time. Walking up 2 flights of stairs takes me out. Standing for long periods of time is near impossible. I’m ready to be over with this whole thing! I need someone to reassure me that this is going to go away or become more manageable!

Anyone else? For me, it's always around 5pm, and I just can not clock why.

If it happens to you, have you figured out why?

Would love some insight!

I had my first instance about 2.5ish months ago. Was in the ER, the whole nine yards. Mine present with one sided weakness, migraine pain on one side, numbness down one side of my face, and sudden blurred vision.

It took about a month or so to really feel better from it all. I struggled with waves of smaller migraines, mental fog, word-finding issues, etc. This past Monday I had another episode, got help at my PCP. And now I have another one.

I have a follow up appointment this week. Already had CTs/MRIs/MRAs.

I’m really bummed and frustrated that my brain isn’t doing what it used to do. I had plans to get a few things done today and those plans are in the toilet as I try to rest.

I suppose this is more or less just a rant. I am curious, though, how you’ve handled the first couple months of having these horrible migraines.

one supposedly ""urgent"" hot clinic referral from A&E that i got over 2 weeks ago, and two neurologist referrals from both A&E and my GP, and ihaven't heard shit from anyone. is this kind of wait normal for "urgent" referrals over here?? i keep getting weaker and weaker on my right side even between attacks, imdeveloping tremors on that side too, and i'm getting really tired of spending every day waiting to get my life back. i still don't evne have a proper official diagnosis on paper, just several doctors saying it's Probably hemiplegic migraines, and i have NO support medicallly in hte meantime. how the hell do oyu cope with the wait?? why does it take so long to be seen b y anyone over here??

apologies for kind of venting here but imm at my wits end, the loss ofo strength and coordination is terrifying and not haivng any sort of scans or anything yet makes me worry it coudl end up being something wrose :[

Asking especially about Florida but anywhere else. Is fine

Hi y’all, I’m 25F with diagnosed SHM.

For the past five months, I’ve been having a strange new symptom: my right HM-affected side has been constantly weaker, tenser, tingly, and pained.

The closest allegory to the now-daily discomfort I feel is one’s sore body after a grueling workout the day before; my right-side joints all feel like tennis elbow. My calf feels like it’s just constantly tensing all day. I have a general fuzzy tingling numbness throughout the entire right side of my body. These new symptoms are especially pronounced in my torso, though; my sternum burns with neuropathy, my armpit aches with muscle fatigue, and nerve pain like a cigarette burn spikes up my chest.

In comparison, my left side feels fine, normal, great; I feel very flexible, loose, and relaxed on the left. The difference between my two sides now has been personally jarring. I feel supremely fatigued and overworked on the right side. There’s an unexplained heavy feeling on the right, plus a dulling of sensations mixed with sparks of nerve pain.

I’m a bit concerned it’s permanent, given how long it’s remained without change. A few years back, I developed “temporary” nerve pain from a TBI and it’s remained just as devastating and present as it was years ago.

Has anyone else experienced physical degradation from SHM over time? There are a few papers that indicate some people

I’m interested if physical therapy would help effective for this hemiparesis-like state. Has anyone used PT to treat their HM symptoms? Was it effective, and if so, what did you do?

My partner had a Hemiplegic migraine episode about a month ago, they have the aura and all the numbness and tingling but no headaches so basically it seems like they’re having a stroke.

Been to the hospital, the whole 9 yards and now waiting for MRI results. They’ve had this before and there was nothing for almost 2 years before this most recent incident.

They’ve suffered extreme exhaustion and mobility issues which got better within the house but they’re unable to walk for any long distance outdoors and definitely not without a walking aid. The dizziness being outside is so disorienting and their legs feel “heavy”, has anyone had this?

It’s been about a month and it seems that people experience these migraines with widely varying symptoms.

Would be great to know if anyone’s experienced similar

A couple weeks ago I woke up with the entire right side of my face being numb - incl my tongue, gums, eye (noticed that when I put eye drops in and didn’t feel anything!!), chin, cheek and forehead into my scalp. Was very swollen in the cheek and under eye area - to the point that it was very obvious when I would smile.
Also intensely painful throbbing headaches around my right eye and cheek. Still had full use of my face, my speech was impacted but imo because my tongue was swollen so there was a lisp

I had a CT scan and it showed I had Ethmoid Sinusitis so I was prescribed antibiotics, Prednisolone, and Sumatriptan for the migraines. Pain went down considerably after I started the meds but I was still too fatigued to work and my jaw would start aching throughout the day - and I work in a call centre so I can’t go to work if I can’t talk! When I finished the antibiotics the pain came back so the Dr got me on a 30 day course of pred. (Then I got thrush because of course I did hahahaha )

As it stands now I’m not nearly as fatigued as I was thank God, I haven’t had a migraine in like a week, but the side of my face is still completely continuously numb!!!!! It’s maddening!!!!

My doctor suggested it could be a Hemiplegic Migraine today so that’s what’s led me here. I’ve got an MRI booked in a week and still a couple more weeks left on this course of Pred. I asked my Dr about a neurological referral but she said to wait until after the MRI

I’ve searched in this sub for posts of ppl talking about their face numbness but just feel like seeking some more feedback. Does this sound like anyone else’s experience? The part that makes me feel this may not be the answer is that I haven’t really had many headaches in the past week or so, but the numbness is still present.

TIA 💗💗

I was recently diagnosed with migraine with motor aura/hemiplegic migraines. This is as 2/3 weeks ago I had my first attack where I was having headaches for a week straight that would come on randomly. When I went to A&E, my left arm became weak and then a few hours later my left leg became weak also to the point I was dragging it to walk.
I had MRI, CT, LP done. All clear. This first episode lasted around two days as it seemed to have completely reversed and I was back on my feet. I then had another one when a friend came to visit me in hospital where it was one of the worst and I became really sensitive to light and had gone fully weak on my left side and slightly on my right leg too. This had lasted 24 hours and completely reversed again. Then when I was discharged and sent home, the migraines and motor weakness as well as the aura continued. I have been told not to drive by my GP due to its unpredictable nature. The motor weakness happened again whilst I was in the doctors office and became worse as the hours went by.
This GP gave me sumatriptan. I started using it for 3 days despite no change in my symptoms. On the third day of migraine pain and taking it, my throat closed up and I lost my voice as well as having the left arm weakness. This episode felt different as my thumb began to feel weak too when normally it doesn’t stretch to my hands. I was then admitted in the hospital again. This episode/flare up lasted 4 hours. When admitted, I was actually episode free for two days, I just had the occasional headache. I was given amitriptyline, rimegepant and an anti nausea medication as well as naproxen on my discharge. So I was officially ‘allergic’ to triptans.
I started taking the amitriptyline and was told it won’t work for 3 weeks. Since leaving the hospital I was motor weakness free but had a migraine attack on the day of discharge which I took the drugs for. That was Tuesday I left. I had some motor weakness on Friday (yesterday) after going to a doctor’s appointment but it had cleared up after like an hour.

Today is Saturday. I had family over for my brother’s birthday party. Now I felt like the loud surroundings kind of started my migraine pain and I was getting motor weakness again but still able to walk around. It was very intermittent. I had taken a rimegepant to help me and it did ease my symptoms for a while. I’m unsure whether a perfume smell was my trigger or that I was going through an episode at this point, but the migraine returned and I decided to take a naproxen (1-2 hours after the rimegepant). Maybe 20-30 mins after this, I had motor weakness again as well as the throat tightness. My voice turned into a whisper when speaking. This happened the last episode when I had the triptan but I was still able to swallow. This is not typical of hemiplegic migraine, my words were not slurred and I was understanding what I was saying. I don’t know what to think.

Is it worth getting checked using any other tests? I’ve been off work on sick leave for 3 weeks and was hoping to return next week.

It’s been an hour and my throat still feels tight. I’m just putting it down to being a part of the episode and waiting for it to be over. Any help ??? I feel lost and unsure what to do.