r/HemiplegicMigraines

I hope someone can give me some encouragement. My migraines are very complex and the vary from each episode in intesity and pain, but main point across all of them is aura-->numbness all the way through the body and face(if right aura left numbness and vice versa) --> headache.
Also depending where it starts I get symptoms like slurry speech or my bodies ability to regulate temperature goes out of the windows (too hot or too cold on that side).
Main good point is that if I can control my numbness and calm myself down I probably won't throw up if I don't throw up during the first 2 hours of the episode I am going to be okay.

SO my main question is if anyone has anything similar and if yes, how do you travel?? I can survive some day trips where I'll always have a bed close, but I'm too afraid to go anywhere that will isolate me more, my concern is if i get a migraine somewhere where I don't know the place or have a place to lay down close by I'll basically be dead, if I throw up symptons get exponentially worse and last for 6-7 hours. Any encouragement or not would be helpful. thank you :)

Also if anyone has any useful tips to keep the numbness atleast confined would be helpful, I'm having the most trouble when my aura is the at the peak point and numbness is at my lips and tongue.. It feels like having the worst trip of my life and my stomach wants to leave my body.
thank you.

Hi everyone! I’m not asking whether I have HM**,** and I’m currently being worked up by my neurologist. I’m just curious if anyone with diagnosed hemiplegic migraine has had a similar progression.

I have complex migraine (currently treated with Emgality, which helped a lot initially) and POTS. While I was working remotely my episodes were fairly well controlled, but after returning to in-person retail they’ve become much more frequent despite treatment.

During episodes I can have bilateral arm and leg weakness (sometimes I can’t walk), blurry vision, loss of coordination, and speech issues. Sometimes I physically feel too weak to speak, and other times I can’t retrieve words even though I know what I want to say (for example, I once called a praying mantis a “sexy grasshopper” because I couldn’t access the right word). The symptoms develop gradually over several minutes and resolve completely afterward.

For those with diagnosed HM, has anyone experienced a similar progression or combination of symptoms? Did your treatment plan change when your episodes became more frequent? I’m mainly looking to hear others’ experiences so I can have a more informed discussion with my neurologist

for the past 9 months i've been suffering from what i now know to be hemiplegic migraines several times a week, causing pretty bad near-constant weakness in my right leg. i've been in so much pain and i never would've considered that a migraine could also cause you to lose strength on one side of your body, lose control of your speech and make you feel so sick all the time!! they've been getting worse and worse over the past 9 months, and the stress from the symptoms getting worse triggered more migraines, which created this horrible cycle until it got to the point i was almost constantly experiencing symptoms. i also started experiencing a loss of strength and pins and needles in my right arm a few days ago, which REALLY freaked me out and is what pushed me to try to advocate for myself again.

i thought it'd be hopeless and they'd just send me home telling me that nothing's wrong, but after a visit to a&e the other day because i thought i was having a stroke, they diagnosed me with hemiplegic migraines!! to my surprise, my doctor [who previously dismissed the symptoms] also agrees with their assessment and he's trying out different meds for me starting today!! i'm honestly a little shocked that they actually found something after months of people around me insisting it was psychosomatic, i really thought that i was doomed to feel like that forever 😭 for the first time in 9 months, i'm actually optimistic about my health and very excited to get back to living life again!!

sorry for the long post, i just didn't wanna annoy anyone i know further with my ramblings and i needed to get it down somewhere... i'm feeling a lot of conflicting emotions right now, but optimism is the one i'm choosing to focus on right now ^_^

hey all, have any of you had any luck getting ADA accommodations at work for hemiplegic migraines? I really love my job and don't want to lose it over this😢

I’m searching for a community of people who may be experiencing vestibular migraine symptoms. I’m in the hospital and nobody can seem to figure it out my complex symptom presentations. I’d like to there there’s someone out there with very similar symptoms and hope we can help each other and learn from each other.

I had my first hm attack(as far as I know anyways) about 2 years ago now. It's only gotten worse since then.

I recently found out that I have craniocervical instability and a borderline chiari I malformation, which definitely explains a lot of my daily symptoms and chronic migraines.

I just wanted to know if anyone else experiences HM like I do though, because it seems most people only get attacks/symptoms every few months on average. I get symptoms every. single. day. I also have POTS, which goes horribly in hand with HM.

It's excruciating and exhausting. My body never has enough time to recover and I feel so mentally and physically exhausted all the time. Most of my migraines don't come with pain, but It's been happening more often.

I have really bad medical anxiety, especially since my first attack because I was home alone and scared that I had a stroke. So I just want to know if anyone else experiences this.

I know I'm dragging this on, I just woke up to a migraine ugh lol

Anyway, if anyone's curious, or just for more information(bc I know symptoms vary for everyone), here are the symptoms I experience on and off every single day for at least the past year:

- Exhaustion/fatigue

- On and off head pain/pressure

- Slight numbness/nerve issues in typically left side of body, specifically fingers, face, and foot, though it often switches sides and sometimes it's both sides at once.

- Muscle weakness, specifically in arms

- Flushing in face/heatflashes. Usually one of the main warning signs that I'm about to experience my migraine for the day. I also experience what I believe is Red Ear Syndrome. Flushing around my ear, making it extremely hot and red, switches sides.

- Lightheadedness(though it could be just the POTS)

- Extreme brain fog

There's more, but I can't think very well right now. I'll gladly answer any questions if anyone has any.

Had one a year ago that targeted my right leg, one year later I’ve still got motor control and weakness issues in that leg. Had a bunch of HM attacks in a short period of time a couple weeks ago and I think it targeted my prefrontal cortex, it’s totally changed my personality. I’m paranoid, emotionally unstable, irritable, low impulse control, having mood swings, speech issues, cognitive/memory issues, and worst of all I’ve pretty much lost the ability to feel empathy. This has had a huge effect on my personal life and relationships as you can imagine. I’m on the waiting list for a neurology appointment but I’ve still got a few weeks to go until I’m gonna hear back about that. Also the GP told me my symptoms are too complex to be prescribed any medication until after I’ve seen a neurologist so I’m currently unmedicated.

I’m wondering if anyone here has any experience with HM symptoms that take a long time to go away? If so is there any strategies for getting the symptoms to go away? Also how do you guys prevent the attacks from happening in the first place?

I’m hoping for this to go away on its own but I’m worried my current personality and cognitive issues might be long lasting like the problems with my leg. The attack that caused my current personality/cognitive issues was far more extreme than the one that affected my leg. Any help to get myself back to normal or prevent future attacks would be greatly appreciated.

Has anyone tried Florus roll-on applicator? I know it's made up of stuff that other people have mentioned, just wondering if anyone has tried it, and what they think about it.

Head Pressure History
Approximately one year ago, I developed constant daily head pressure. The onset was sudden and clearly remembered. The symptoms began shortly after my olanzapine dose was reduced from 7.5 mg to 5 mg while my fluoxetine (Prozac) dose was increased to 40 mg.
Since that day, the head pressure has been present every day and has never completely resolved.
The intensity fluctuates throughout the day, usually ranging from 2–3/10 at its best to 8–9/10 at its worst, but there is always a baseline level of pressure.
The pressure involves my entire head rather than one specific location. It is a constant pressure sensation rather than a throbbing headache.
The only time I experience relief is when I am asleep. As soon as I wake up, the head pressure returns.
Associated Symptoms
Significant short-term memory impairment
Poor concentration and attention
Difficulty following conversations
Word-finding and speech difficulties
I do not typically experience:
Photophobia
Phonophobia
Nausea or vomiting
Aura
Because of these features, I personally do not feel that my symptoms resemble a typical migraine.
Medication History
After the head pressure began, I later returned to a higher dose of olanzapine. The head pressure became less severe but never disappeared completely.
I have also tried several migraine medications, including Ubrelvy and Nurtec, without benefit.
Previous Evaluation
Brain CT: Normal
Brain MRI: Normal
Routine blood work: Unremarkable

This is really just a way for me to document what's happening. I appreciate any and all questions.

I had a sharp pain in the right side of my head and instantly that side of my face went numb. About 30 seconds after my right arm started tingling and my ring and pinky fingers went numb. The inside of my leg down to my foot followed shortly after. Mentally I feel okay. I already feel loss of strength in my right side as well.

This all started about 20 minutes ago.

My hemiplegic migraine this week started with ocular and then an hour later turned HM. I spent the day off work of the attack and went the next day due to going on this upcoming week.

I turned my office lights off and turned my laptop on night mode. The day after the migraine I was okay, but the days following my neck was extremely weak and I was nauseous. Friday I was filled with brain fog. Since this migraine which started on my left I have had tightness and pain on the right side of my neck and back.

Now my period is coming and my cramps are next level. I’ve got a squeezing feeling in my upper right arm that happened periodically and my jaw on my upper right side is tight… I’m sure it’s nerves but it is making me so anxious and the anxiety is making the symptoms worse.

I have been doing everything I usually do in post drome. Pain meds, caffeine, water, electrolytes, tiger balm. I am so tired and fatigued and my period coming is making it worse. I am thinking this is hormonal since it has happened the same week before periods. 🥲💔

Let me know if you have any quick recommendations. I have doctor’s appointments scheduled for August because that’s when they can get me in.

I’m teenager and I had HM since I was little. The problem is that I’m going to boarding school that is far away from my home. When HM hits me, I can’t talk or communicate at all. Even though I try to talk, pronunciation is ridiculous and embarrassing. I’m concerned because if HM hits me during class time or dorm, I have no idea how to explain that I need to go to nurse’s office. Of course I’m going to explain about HM to school nurse before but I don’t want to look silly in school because of my HM. I literally just don’t know what to do and just so afraid. Can someone give me some advice please. I’m so stressed and I want to stop being so panic every time HM hits.

Had an episode on Monday. This one was bad. Still numb and weak on the left side. The part that bothers me is my memory is impacted. Each HM or seizure seems to take a piece of me away.

I had my worst episode in 2020. That was like someone erased my hard drive. I rebuilt after it but it took almost a year and I filled in gaps, made up stories, or just faked what I had to.

This one isn't at that level, but it has me concerned. I've experienced a sharp uptick in activity this last 1.5 years.

Are others experiencing challenges with memory, identity, and a lost past?

I am hoping someone has some guidance or a similar story. Not looking for genuine medical advice (I saw the rules), but just want to know if I'm alone in having these issues like this. I do not know if I have migraines - neither do my neurologists. Everyone seems to be at a total loss.

In late Feb, I had a simple salivary gland procedure to fix some bad ducting. No biggie, no issues reported in surgery. During recovery, I got an infection in the gland and took antibiotics - again, no biggie. During the end of the round of antibiotics, I started noticing visual issues. Seeing a little more black, some blurriness, and lots of trouble reading my monitors at work. I then started getting tons of anxiety from the persistent visual symptoms. Went to the ER not understanding what's wrong, told all was fine, given Vistaril. These visual symptoms continued for the rest of March and into April.

April 18, while out to the movies with friends, started feeling very disoriented and dizzy, with a heavy, buzzing pressure at the very top of my head. Remarked to my wife that I felt weird during the movie, but wanted to stay out with friends. Later after the movie, started having trouble finding words and speaking. Had a mild headache, tbh which felt normal. Started feeling off-balance and had to sit down when talking to folks. Flash forward about an hour, I lost all color in my face, felt nauseous, lost balance & had to have help walking, entire left side of my body went numb, and then got the worst headache of my life. Headache came out of nowhere and felt like a railroad tie in my head. We rushed to the hospital and they put me in stroke protocol. All CTs and non-contrast MRI came back clean. Echocardiogram, x-rays, everything else came back clean. I was discharged a day later and referred to neurology. They had assumed it was TIA, but neurology told me the next week they did not believe it was TIA as I have continuing symptoms. Got gaslit by a doctor at a post-discharge clinic telling me that my lamictal (which taken for anxiety for years) was causing this. I had no changes to medication or lifestyle. I exercise regularly, eat mostly vegan at home (wife is vegan), get plenty of rest, and am 34 years old. I had piercing headaches for the first 4 days following my event that led my to the hospital and then smaller ones for the next two weeks after, but otherwise haven't had any again other than very slight, tiny aches that are hardly noticeable.

However....

Since then, I have had DAILY, CONSTANT disorientation, visual snow, BRAIN FOG, dull headaches, balance issues, random chills, blurry vision, and have documented to have lost parts of my upper peripheral vision. I can't focus, I end up in tears because I just legit cannot think. I am struggling at work (they've been so kind and a godsend) and I struggle to drive sometimes. I am getting immensely depressed, as I feel like I will never get a full day with relief. I have never had chronic health issues before and feel like I'm being held prisoner. I also never had headaches or migraines. I had some sinus issues over the years, but never anything like this and they were always resolved with sinus/allergy medications. I have also had ADHD since I was a child, but that lack of concentration is nothing like this. I know that one fully well, but this is next level.

Instead of any typical headache, I get a tingling immense pressure at the top of my head. Almost always at the top of my head, sometimes it spreads to the crown of my head, but 99% of the time it is at the exact top of my head. It feels like something is pushing down on my brain and almost makes me feel like I'm cross-eyed. The disorientation and brainfog are the worst parts. They feel like they hold me back from doing anything. I get so confused so easily and just end up in tears. I'm not a person to cry often and I feel like I can't stop these days. I don't understand what's happening and it's so defeating to have doctors tell me they don't know what's going on. One of my primary care doctors mentioned that it could be hemiplegic migraines, which would explain my stroke symptoms. I just don't get why I don't get any relief, any day. Some days are lighter than others, but I will still say that at max, I only see a 50% reduction. I never have a full good day. I never feel like myself. For the first 1.5 months following the event, I also had very sharp pains at the back right lower part of my skull. It's still a little tender, but mostly resolved at this point.

I have seen:

- General hospital doctors

- Two neurologists (waiting on seeing two more)

- Two ophthalmologists

- Two optometrists

- Three general practicioners

- TMJ/Headache Specialist

Waiting on seeing:

- CSF Specialist (potentially)

- East West medicine clinic at UCLA

- Neuro Ophthamalolgist

- Rheumatologist

All of my blood work has continued to come back normal. All of my MRIs (Brain, Head, Neck, Spine) all have come back normal, as well as CT. I have a perineural cyst (0.8 cm at T-9), but otherwise totally healthy. My eyes have always checked out perfectly well at every doctor I go to, with 20/20 or 20/25 vision on my tests. I've been checked out for binocular vision, uneven eyes, you name it - all normal.

Medications/Tests tried with little to no effect:

- Sumatriptan (no effect)

- Naproxen (no effect)

- Rizatriptan (sometimes slight effect, but generally no effect)

- Amitriptyline (felt some slight improvement over the course of the first week/1.5 weeks, then stopped working)

- Tizanidine (helped my TMJ aching, but no other effect)

- Round of Prednisone (helped with headaches a little, but no general effect)

- Dexamethasone (gave me horrific headaches and dizziness, plus could not sleep at all)

- Magnesium Glycinate (helped with sleep, but no other effect)

- Cortisol Control Blend (L-theanine, magnolia bark, etc) (no effect noticed)

- Holter Monitor (all normal, although while resting at home heart rate spiked to 155 a couple times)

- Echocardiogram (all normal)

- Cold/hot compresses (no effect)

- Laying in dark rooms (no effect)

- Migraine glasses (no effect)

I do not have piercing headaches, pain behind the eyes, sensitivity to light, or sensitivity to sound. My symptoms are also largely positional. When I lay down, I often get relief for everything aside from the visual stuff in 15-45 minutes and symptoms will start again after 10-30 minutes upright. All imaging showed nothing for CSF leaks (I know that 20% of people have normal imaging). I get short term memory issues half of the time and can't recall many days apart. I don't have times where I feel any sort of episode coming on, I don't have crazy visual aura other than the visual snow symptoms, so I feel like I have no idea what's going on. Migraine medications don't seem to make a dent. Doctors keep throwing migraine at me and then telling me to come back in 3-6 months or legit telling me they don't know what's wrong with me to my face. I feel like I'm in a nightmare. Is anyone else like this? Anyone else have these symptoms that largely don't fit into migraines? Does this sound like migraines to you? One neurologist was going to do a lumbar puncture before they suddenly canceled care because they stopped taking Blue Cross insurance (lol). I don't know what to do and would greatly appreciate any insight that anyone has.

As I'm writing this, I'm on Day 4 of this nightmare, which has yet to end or improve.

I've been on Topamax for 3 months since getting my first HM in May, and during that time my migraines were untouched by the medication. Additionally, I was having mild muscle spasms, normally during my sleep and migraines. When that I wasn't on Topamax, I had those spasms too, but it wasn't as bad as right now. Simply because I'm a teenager, and a very restless sleeper, I just never mentioned it to my family or neurologist, both of which I have come to regret.

The first time my neurologist upped my dose to 50mg, it interacted with another medication and triggered the side effects that everyone always mentions with Topamax, along with those spasms becoming more prevalent, as I was waking up sore and could no longer attest them to a vivid dream I was having. I was falling asleep in the middle of doing tasks, like showering or typing, with no relief from my migraines in the meantime. I adjusted the times I took the interacting medication myself, and continued taking the Topamax as usual, even though it wasn't doing anything. When I reported this to my neurologist, she decided that she was at a loss other than Gabapentin and Nurtec (which was in insurance hell but I have now received and has little effect), or upping my dose.

That call was three weeks ago, but I started the new dosage on Sunday. By the time Monday night came around, I knew something was wrong. From 12-3 AM on Tuesday morning/Monday night, I had: eye fluttering/rolling, upper body twitching, gasping, dizziness, jaw trembling, and nausea. Since then, my mom has caught at least 3 of them on camera, at the neurologist's request. But they happen multiple times everyday, including while I'm at my Summer Youth job, which is really awkward because I don't know how to explain it.

My mother was with me the entire time, I had woken her up before it started. The thing is, I'm awake while it's happening, I just can't move or do anything to make it stop. My mother called the neurology office, which didn't respond until the end of the next day to prescribe the aforementioned Gabapentin and a medication for the tremors, and a request to do an EEG. They've said it's most likely that it'll exit my system within the week, but that's because I forgot to mention the earlier history with the brain fog. I'm honestly a little worried, I don't want it to things worse considering they haven't gotten better yet.

Has this happened to anyone else?

Hi everyone, I’m currently waiting for my genetic test to come back as we are pretty sure I have a CACNA1A mutation. I have symptoms of both FHM1 and EA2 (as does my affected family member) and my neuro is leaning towards EA2 even though I started out with a very aura-heavy phenotype and only developed the ataxia later on. My episodes have evolved throughout the years but currently I get painless HM attacks (dysphasic then left-sided motor aura, severe cognitive impairment, dizziness, motion intolerance, ataxia/dysarthria, hyperacusis) as well as pure ataxia/dysarthria episodes. I also have cerebellar signs (gaze evoked downbeating nystagmus). Currently on Qulipta and Diamox. I’m curious if anyone else tested positive for one of these mutations? I’m aware it’s sometimes difficult to tell the difference between EA2 and FHM1 since the symptoms can overlap a lot. Thanks!

anyone found one online service that handles migraine care start to finish? my fiancée gets bad migraines and we're away at college, hours from her regular doctors. student health isn't cutting it and getting a real neurologist appointment takes forever.

is there one online place that just handles the whole thing — seeing a doctor, getting it prescribed, dealing with insurance, getting the meds — instead of piecing it together ourselves? or is that not really a thing?

Hello. My mother was recently diagnosed with hemiplegic migraines, the symptoms of her episodes imitate strokes so each one has ended up in a long hospital stay. Two days ago she had an episode and was unresponsive, her breathing began to fluctuate and she was taken to hospital via air ambulance. While in hospital, she had another episode where CPR was nearly required but she regained consciousness just as they brought in the crash cart.

I don’t know a lot about these migraines, but I was wondering if people know what I can do from here. Im scared and a bit confused, I want to keep equipment and medication at home so I can keep her safe until an ambulance arrives for future episodes. I am going to take a CPR course as well. Im not very good at keeping calm in these situations, both times I broke into tears and couldn’t put together my words. But she relies on me and I need to step up as her carer, does anyone here who perhaps struggles with the same migraines have any advice as to what I can do? Thank you

I am just about to start treatment with memantine, and I am wondering whether anyone has had experience with it. I am specifically intrigued on its effects on the aura.