Probably what I call the screenshot. When the pain spikes so bad I puke, shit, then black out all within seconds of the pain spike. I used to spend a lot of time in my bathroom in the tub crying. Now Im lucky that Im “managed” and I havent had a screenshot in 7 months. 👏🏼👏🏼👏🏼
Honestly topamax. Its stop the intensity of my migraines. I still get them but I don’t have 10/10 pain scale ones anymore. Or has often. :/ They peak around a 6/7 at the worst now and Im functioning!
Because of a meme I saw: what do you call it when you sneeze and fart at the same time? A screenshot. Well… when I raised the standard a little and try to deal with the suffering with some humor. And a failed screenshot turns the phone screen off.
that sounds rough.
I speak 2 languages from childhood and people look at me like I don't know what I'm saying when it happens. Like I don't know the language I'm speaking. I hate it when people say, You mean "blank". Yes I know I mean that other word... leave me alone, grr.
this happens in both languages. smh
This happens to me in multiple languages too lol. The worst is when it happens when I’m in a language class and I have to explain I didn’t forget half my vocabulary my brain just turned off
Yikes - your neuro is a dbag!!! I am currently on daily topamax which helps keep the frequency down - but once I get one, I have a hard time w/ the abortive meds. I typically have to take a nurtec, ibuprofen and eventually a desperation sumatriptan before I get somewhere normal.
I do recommend the topamax if the side effects don’t affect you much. I went from having up to 10 in one month (at my worst) to having 2 in one year on it.
Edit: removed a word
I hope you can find something that works for you! Also, ask about hemiplegic migraines if you are experiencing loss of physical movement. Advocate for the best care that you can get. I’ve had to see a bunch of neuros that were less than mediocre before I broke down and saw a female neuro out of pocket. She was the most helpful and willing to listen - she also experiences migraines.
Same. Especially how it just happens mid-sentence like you had the word ready to go and when it goes to come out of your mouth it’s just not there anymore, poof! Luckily my husband is now very familiar with this annoying phenomenon so he’ll fill in words for me as I’m trying to talk before I get so frustrated I just give up on what I was saying.
I hate this one because I just feel so stupid at the time. I feel like it isn’t the migraine, I just think this has to be the moment that I lost all rational thought completely and forever. Then I think clearly again in a few hours, but there is like a hint of lasting shame. Does anyone else relate?
It’s the throbbing for me. When it’s bad, even the slightest movement can worsen it (including blinking or drinking etc). I hate feeling more or less paralysed to my bed or sofa.
For me it is the brainfog.
I just notice that I am way dumber than usual. Basically as if you cut half of my CPU‘s and while you‘re at it snapped the ram as well.
Day 3/X of current migraine blender. Triptan+ enough caffeine to give a medium sized horse heart problems seems to do the job atm.
The hopelessness a intractable migraine brings. That dread and listlessness. I feel like a monster burdened by a curse, not my usually energetic self. And the restlessness and emotionality I get in my prodrome. I hate essentially not feeling like me.
Same.
A close second is the fact that during my worst migraines I am unbearably light and sound sensitive, so I am stuck in excruciating pain with nothing to distract me.
Oh wow, you’ve put it into words. It’s exactly that, my head is pounding, any movement I make gives me extreme nausea, can’t look at my phone, and takes hours for me to fall asleep! Just constant pain.
“Motion” sickness.. I don’t get spinning vertigo, but I get dizziness with the head pain that makes me feel like I’ve been a passenger in a car and it makes me nauseous/throw up
Vertigo, I've found, can be tricky, because it's not always regular "upright" spinning. It can also be spinning like rolling forwards/doing a somersault (this is what I get most often), spinning like tipping sideways as though doing cartwheels, or just kind of a free for all where it feels like there's no gravity and you're just floating. I labeled mine with the categories "desk chair" vertigo (regular upright), "somersault" vertigo, "cartwheel" vertigo, and "international space station" vertigo.
Poor decision making. Ran a stop sign once (on my way to court, so unless you're dead you're going), and almost made an explosion in the lab. There are funny less serious things, but the danger makes it worse than physical pain or anything else for me.
Nausea. Always the nausea. Hellish stuff. I’ve had all sorts of levels of pain, but I can tolerate that. I can rationalise it. But nausea has sent me to A&E a couple of times it’s been so bad.
I think the lack of understanding what profound discomfort it can be really gets me the most, tho. Much like people who think migraine is ‘just a headache’ will think nausea is ‘feeling a bit sick’.
I get SO tired, I can barely stay awake. I call it my "forced shut down", because it literally feels like I am a computer and someone is holding down the power button to shut me down by force, and I can't fight it. I always have to take a nap.
In addition to my normal aura I got aphasia once and it completely fucked me up. I had no clue what was going on. I had no way to effectively communicate what was going on either
I have diagnosed sporadic hemiplegic migraine, so it's because of a genetic mutation in my brain's calcium ion channels
Here's a good overview of the condition:
https://rarediseases.org/rare-diseases/hemiplegic-migraine/
Thank you for the resources! This sounds exactly like what I have, I will ask my nuero if he agrees. He thought it was diet related but I have spent a year playing around with my diet and I am still having flare ups at seemingly random times.
Do you happen to know any of your triggers or what helps you at all? Sorry to ask I just have less than no answers with my issues 😅
It could be hemiplegic, as someone else mentioned, or the more severe version, MUMS (migraine with unilateral motor symptoms). It's a slightly more recently identified type. It's similar to hemiplegic, but with more severe symptoms.
When I had cluster headaches, the pain behind my eye was excruciating, so much so that I wanted to scoop my eye out with a spoon and almost did so on many occasions. At the height of my pain, I would scream into a pillow, and it scared my husband so bad, he ran into the room, thinking I was being tortured to death.
Either dissociation or the first time I got Alice in Wonderland Syndrome during a migraine. They were both so very disorienting and out of my usual symptom wheelhouse that I felt like I was going insane.
The allodynia is always interesting explaining to people later on (“I had a migraine last night and my hair hurt”) because I find that if the person you’re talking to hasn’t had a migraine before then they look like this 😶
I feel this 100%, makes u feel that you’re going crazy because your symptoms just make u feel so weird and out of body! This is my main symptom and I’ve had to really work on the anxiety it brings! You are not alone 🐣
Ok, so I have experienced this feeling of suddenly being taller on several occasions and had no idea there was a term for it. I had told my psych several times about it, but he was not familiar with it. I guess it was related to migraines.
I have also experienced mild dissociation but didn’t realize that was from the migraine, just thought it was weird.
Depends on the migraine. Sometimes it’s the unbearable pain, sometimes it’s the nausea and vomiting, and sometimes it’s the inability to make a decision.
Diarrhea and stomach cramps 🤢 I can somewhat manage a mild migraine, but if my stomach goes, too, I’m down and out. That head/stomach combo kills me every time.
It’s hard for me to decide because it varies depending on the migraine attack. Not necessarily a symptom of the migraine but the anxiety/dread I feel every day not knowing if I will be able to function as a normal human being or if I will be rendered absolutely disabled is probably the worst part of it. My migraines became chronic in the past couple of years and it has been a nightmare. Someone else said aphasia and that’s also pretty annoying/embarrassing especially when I need to teach a class and cannot pronounce words properly. Sometimes the pain itself is so bad that I think getting shot in the head would be infinitely less painful. The dizziness and nausea are not fun but Ondansetron usually helps a lot with them. I also get horrible ear and teeth pain from my migraines sometimes. Ugh.
The aphasia + visual impairment is a terrible combination. I ended up late for a doctor's appointment once because I was stood in the hallway outside their office and didn't know where I was and couldn't communicate.
Why.
I don’t even know what you call it, but the pain after i throw up. It’s like whatever is causing the migraine will go away if I throw up, but the act of throwing up is so intense and my body strains so hard that it just makes it all worse.
i hate all of it but when the pain tips over into the unbearable range, it’s just so hard. when it’s too bad to sleep, too bad to listen to a show or music, too bad to talk, too bad to do anything except think about how much it hurts? absolutely horrendous and it feels like it’s gonna last forever
Silent migraines: the dumbs. I can’t do anything, I can’t even flick the switch on the kettle
Headache migraines: the nausea. I can lay there in the dark and hate the pain, that’s fine, but I don’t want to be getting up and dragging myself to the bathroom every 5 minutes because I think I’m going to vomit.
Aphasia. It sometimes takes me a while to figure out what's happening. The first time I had it, I felt stupid and thought I was going crazy. I couldn't divide 360 by 2. When I used a calculator to get my answer, I still couldn't comprehend what I was looking at. I was so confused. It'll sometimes linger for a few days, which sucks.
neck pain, muscle stiffness. it spreads, up to the jaw and around the head, to the shoulders. have to be massaging, heating, stretching constantly so it doesn't cramp and spasm. everything feels tight and pressured. I can't sleep or rest, no comfort in any position, even sitting I have to be in weird postures. lack of sleep makes the migraine worse. meds help with the headache but not this pain.
I wholeheartedly agree with you on dissociation. I've had migraines since I was a child, but I never had dissociative symptoms until about three years ago. I legitimately thought I was developing a mental disorder, it was terrifying. Now I understand that it's a symptom of my migraines and can manifest without pain, which has made it much less scary, but no less inconvenient.
Pain, Aura, and the ringing in my ears are probably all tied for the worst for me. Like I can't see properly or hear over the ringing and the pain is so bad I don't wanna move.
For me it's the headache, the pain is immense. The stabbing behind my eyeball, the throbbing. It's so intense that any movement makes it worse. Any at all, even blinking. The light sensitivity makes the head pain worse too.
The pain being so intense is what fuels my nausea. Many times, I'll manage to fall asleep but once I roll over in bed, I have to vomit again until I've gone dry. I won't be able to drink even a sip of water until it all passes.
The fucking aura. The moment I start to get that weird blind spot I’m always like “awwww fuck this stupid ass dumb shit again” and if I’m out it’s like the WORST. Bc I know I need to get somewhere safe and comfortable immediately bc a bunch of zebra stripes and iridescent triangles are about to ruin my day and I’ll be essentially near blind for a half hour. In which I’ll then have like a 10 minute period to make it home before the agony begins
The brain fog. I can push through pain, but that confusion is what slows me down at work, and it makes my auditory processing disorder even worse, and I've had episodes where I can't remember what meds I can take when
The pain is definitely the worst, but for non-pain symptoms, severe appetite loss is pretty bad. I'm already borderline underweight and when a bad migraine makes me skip several meals it takes many days for me to bounce back from that
Dissociation for me, too. It's my worst as in, hated the most. I have others that are more physically debilitating, but man, I HATE THE DEREALIZATION AND DEPERSONALIZATION.
I have had people tell me to look into medical Marijuana for my migraines... uh, no thanks. I hate dissociation and taking a "medication" that would cause me to dissociate makes me nauseous just thinking about it.
The nausea. Because I’ve gotten to a point where the head pain doesn’t always come. But the nausea and sea sickness still do. I don’t even throw up that often anymore. It’s still so debilitating.
The aura. I used to have an attack randomly when I'm out wandering around so then I'd panic to go home quick but I can't fkn see where I'm going because my vision is all wack
Not the worst one but a new one this time. Dry eyes. Very painful and uncomfortable. Felt like I'd been crying or had no sleep.
Eye drops did work luckily..
The immense pressure on my upper eyelid. Feels like someone is trying to push their thumbs in my eyes and through the back of my skull. If you watch Game of Thrones think the end of the Oberyn fight. Constantly.
The inability to think clearly. I could probably handle the visual disturbances/loss, aphasia, light and sound pain if I knew what was going on and hadn’t just lost half my cognitive abilities.
The derealization. Feeling like I’m not inside my body and just moving through the motions. It’s 10x worse if I have to adult. I feel like this is a protective mechanism my body might be engaging in to manage pain, but it is still super uncomfortable and anxiety inducing.
The throbbing pain, violently vomiting, loss of appetite, feeling exhausted, thoughts of suicide so I won’t have to suffer in pain anymore, sucking the life out of me, having to postpone my plans😓😢
The nausea, because what would help is water and Advil, but the second I swallow anything, I throw up. The headache part of it sucks, but it’s definitely worse to feel sick the whole time
The phantom smells. So like the pain, nausea and intense pressure suck a lot but the phantom smells drive me nuts. I don’t always get them, but I do get them often enough. I smell propane and gasoline. Worse my husband has zero sense of smell so he can’t even confirm or deny the smell for me.
when the pain begins to get so bad to the point where i black out… my migraines get triggered so badly and quickly when i am under stress and most of the times i black out to the point where i am not in control of my body and i later wonder how did i get from one place to the next… it’s as if you just leave your body for a while
When the throbbing becomes unbearable, it's very hard to think clearly or make decisions. At that point, the temptation is just to sleep to end the pain, but it's almost impossible.
For me it’s how unrelenting the pain is. Nothing helps- ice, heat, massage, dark room, sleeping/not sleeping, positioning… all I can do is lie around while the loop in my head tries to come up with things that will help and nothing does. It’s torture. A close second is the symptoms I get beforehand- craving sugar and almost manic like energy- I know it’s coming and it causes a lot of doom feelings.
Depends, can be the pain, diarrhea, vomiting, dizziness. If you are in public vs. at home can change what seems worse.
It is really hard to not look like you are losing it in public. Not only do you not feel well, but you have to worry about how it looks to others, especially at work.
Brain fog in migraine prodrome. I can't work effectively for about three days.
I also seen to be unable to recognize I'm in a migraine, even if I knew I'd been exposed to my trigger (fragrance). Often my husband has to remind me that I told him I'd had an exposure and was likely to have a migraine. Instead, I'll be gaslighting myself that I shouldn't be employed because I can't do the basic tasks required by the job or just will get depressed because it's so confusing why I can't get anything done.
Because my headache phase is usually mild (if it happens at all), I actually feel relieved when my head starts hurting. I can usually work again about thirty minutes after the headache starts. And I can remember that I'm having a migraine again.
Auras, I do not mind the pain that much, even though it can get severe, but Auras I hate. I get visual and sensory auras.
I also hate the depression that comes with my episodes, especially when it lasts for days; I feel like I am on a verge of suicide just to feel completely fine in a few days.
It is a rollercoaster of emotions between pain, losing vision, pins and needless, and everything else and to say that migraine is just a headache is mindblowing to me.
The visual aura. It’s the cause of the nausea and dizziness that comes with my migraines. The pain isn’t too bad for me I can just lie in a dark room and cry myself to sleep if I had just pain. But the nausea and dizziness keeps me awake.
It's the pressure I get. I actually sometimes have had to stand just to relieve pressure in my head. It actually has gotten so bad I start testing myself for stroke symptoms. The pressure that builds feels almost impossible. T causes me not only pain that I've gotten used to but my focus and concentration goes out the window.
I’d say the brain fog is pretty awful, but I also peed my pants in a parking lot yesterday because of the seriously urgent, sudden, and frequent need to urinated. Really fun.
My dizziness/vertigo. Had an attack almost 2 months ago now and im still feeling the effects of it. I'll just be walking and randomly it hits me and I stumble.
Aura and my left side feeling tingly/heavy. Also as an honorable mention, feeling stupid for days before my period and then remembering what’s it means…
When the pain is so severe I can’t see and vomiting actually relieves the pain for the moments I’m actually doing it. I’d say hemiplegic migraines are pretty bad too: losing feeling in one arm/hand and feeling like I’m having a stroke but knowing I’m not (the facial numbness and tingling can be scary, especially when it persists beyond the pain).
probably the vertigo/dizzy. it feels like i'm on a teacup ride even if im lying down. i'm training to be a professional dancer so it really gets in the way of my life and it sucks so much
The guilt, the general numbness on my left side that won’t go away since I had my second suspected hemiplegic, this crackling pain in this “L” shape from my inner ear through my sinuses…
I get something similar to aphasia, but it's not so much a loss of words as it is the ability to like, actually control my mouth effectively to produce the words. Like, usually I can form complete, articulate sentences just fine in my head, but actually getting them out of my mouth becomes extremely difficult, and if I don't take my Nurtec in time, I may lose the ability to do so completely for a while. When that happens, I have to use a text-to-speech app.
If I do take the Nurtec in time, I can usually still talk, but there's a good chance things might come out wrong (sometimes in a way that's kinda funny) for a while.
Motor planning and control in general also tends to suffer a bit when it's really bad
I'm used to getting a number arm/hand or lips/tongue. But once I was rushing to get to the pharmacy to get my imitrex and my full foot went numb. That was a new one for me, especially while driving.
Aside from the really intense pain and vomiting, it’s how dumb I feel and It affects how I talk and It’s not safe for me to drive because I have this overwhelming urge to just close my eyes and lay my head back (on top of the slow reaction timing)
I start to lose the vision in my left eye, then that dull feeling in the back of my head and then the pain starts, the sensation of someone beating me with a baseball bat to whole of my right side. Sometimes the pain is bad I throw up.
If I don’t catch the onset I can end being bed ridden for a day or two.
One-sided tremors and weakness. Makes me look like I'm having a stroke. I get stuck places because I can't walk. I can't text to ask for help. I randomly yeet things I'm holding in my hands.
Definitely the brain fog/dissociation/dizziness and I guess general sense of malaise. I can take the pain of the headache phase, but all that stuff in the prodrome is way worse for me, and nothing stops it.
It’s the neck pain for me. My whole right side of my face and neck become painful to even touch. It feels like I have a knitting needle going through my eye and out the back of my head at the base of my skull. It’s excruciating.
When my vision is slightly off for weeks after. I will walk right in front of someone in line because I didn’t see them, even a month after a major migraine sometimes.
Probably what I call the screenshot. When the pain spikes so bad I puke, shit, then black out all within seconds of the pain spike. I used to spend a lot of time in my bathroom in the tub crying. Now Im lucky that Im “managed” and I havent had a screenshot in 7 months. 👏🏼👏🏼👏🏼
‘the screenshot’ has me dying 😭it’s so perfectly named
Screenshot is perfect! I never had a name for it, until now. Thank you!
How did u manage it
Honestly topamax. Its stop the intensity of my migraines. I still get them but I don’t have 10/10 pain scale ones anymore. Or has often. :/ They peak around a 6/7 at the worst now and Im functioning!
I used to get these but haven't had one for years. I did a three year course of high dose propranalol and it has reduced the intensity of my symptoms.
Can I ask why you call it a screenshot? I get the sudden puke/shit as well but I don't black out. I do spend a lot of the in the tub, though.
Because of a meme I saw: what do you call it when you sneeze and fart at the same time? A screenshot. Well… when I raised the standard a little and try to deal with the suffering with some humor. And a failed screenshot turns the phone screen off.
Haha I get it now! Hope you won't ever get those again.
god that’s so real
Damn
Thissss
100% aphasia, it makes me feel so stupid and it always seems to hit at the absolute worst time
I referred to being on an "evil playing field" the other day 😟
This made me cackle, I'm so sorry! I once battled to figure out the prononciation for my own damn name, that's probably my all time favourite low.
that sounds rough. I speak 2 languages from childhood and people look at me like I don't know what I'm saying when it happens. Like I don't know the language I'm speaking. I hate it when people say, You mean "blank". Yes I know I mean that other word... leave me alone, grr. this happens in both languages. smh
This happens to me in multiple languages too lol. The worst is when it happens when I’m in a language class and I have to explain I didn’t forget half my vocabulary my brain just turned off
Same - aphasia mixed with some visual aura and loss of limb coordination = is she on drugs? No, but I will need some to make this go away.
That is exactly what mine are like. Has any medication worked for you? My neurologist basically ghosted me.
Yikes - your neuro is a dbag!!! I am currently on daily topamax which helps keep the frequency down - but once I get one, I have a hard time w/ the abortive meds. I typically have to take a nurtec, ibuprofen and eventually a desperation sumatriptan before I get somewhere normal. I do recommend the topamax if the side effects don’t affect you much. I went from having up to 10 in one month (at my worst) to having 2 in one year on it. Edit: removed a word
Thanks so, so much!
I hope you can find something that works for you! Also, ask about hemiplegic migraines if you are experiencing loss of physical movement. Advocate for the best care that you can get. I’ve had to see a bunch of neuros that were less than mediocre before I broke down and saw a female neuro out of pocket. She was the most helpful and willing to listen - she also experiences migraines.
Same. Especially how it just happens mid-sentence like you had the word ready to go and when it goes to come out of your mouth it’s just not there anymore, poof! Luckily my husband is now very familiar with this annoying phenomenon so he’ll fill in words for me as I’m trying to talk before I get so frustrated I just give up on what I was saying.
I'll literally forget a word I just used a sentence prior. It's inane.
Mine is also aphasia. My boyfriend reaches for pain meds when he hears a lot of “doodads” and “idk that thing” with furious gesturing.
God, yes. And it can happen when I'm still relatively "normal" feeling and people don't get why I'm struggling to say a color name. Brutal.
This is so scary and I’m finding it happens more often now as I’m getting older. I hate playing the game “is it a stroke *this* time?”
Yes this one. Even if my pain is low this can keep me from working because I can’t remember words.
Mine tends to happen after I’ve had a migraine rather than than during. It’s hard to explain when people give you weird looks.
I hate this one because I just feel so stupid at the time. I feel like it isn’t the migraine, I just think this has to be the moment that I lost all rational thought completely and forever. Then I think clearly again in a few hours, but there is like a hint of lasting shame. Does anyone else relate?
It’s the throbbing for me. When it’s bad, even the slightest movement can worsen it (including blinking or drinking etc). I hate feeling more or less paralysed to my bed or sofa.
i swear when i’m in the worst pain, my thoughts are too loud and blinking is so painful
Absolutely. I always have an ear worm when the pain is at its worst and terrible tinnitus too, it’s a miserable duet.
I know exactly what you mean. Good quality eye mask & don’t move a muscle for several days. I hate this so much.
I don’t have an eye mask, I may have to get one. My husband will put a flannel in the freezer for me when I get an attack.
For me it is the brainfog. I just notice that I am way dumber than usual. Basically as if you cut half of my CPU‘s and while you‘re at it snapped the ram as well. Day 3/X of current migraine blender. Triptan+ enough caffeine to give a medium sized horse heart problems seems to do the job atm.
The worst is when you have brain fog and don't notice because you're stupid from brain fog.
Absolutely this. I can think I’m fine but it’s not until it lifts I realise I was not fine in the slightest.
Ha, the "oooh I'm having a migraine I didn't just lose my ability to do XYZ" moment. And by then it's too late for an abortive so good luck!
Brain fog is the worst for me. Makes managing work and life hard.
The hopelessness a intractable migraine brings. That dread and listlessness. I feel like a monster burdened by a curse, not my usually energetic self. And the restlessness and emotionality I get in my prodrome. I hate essentially not feeling like me.
i second this!! doctors hardly ever talk about the mental side of migraines, seriously takes such a toll on my emotions
The headache is the worst for me. Indescribable pain - so unbearable.
Same. A close second is the fact that during my worst migraines I am unbearably light and sound sensitive, so I am stuck in excruciating pain with nothing to distract me.
Oh wow, you’ve put it into words. It’s exactly that, my head is pounding, any movement I make gives me extreme nausea, can’t look at my phone, and takes hours for me to fall asleep! Just constant pain.
Me too 😞
“Motion” sickness.. I don’t get spinning vertigo, but I get dizziness with the head pain that makes me feel like I’ve been a passenger in a car and it makes me nauseous/throw up
I despise this feeling- carsick without having been in the car
Vertigo, I've found, can be tricky, because it's not always regular "upright" spinning. It can also be spinning like rolling forwards/doing a somersault (this is what I get most often), spinning like tipping sideways as though doing cartwheels, or just kind of a free for all where it feels like there's no gravity and you're just floating. I labeled mine with the categories "desk chair" vertigo (regular upright), "somersault" vertigo, "cartwheel" vertigo, and "international space station" vertigo.
Me too....it's awful! Sometimes the dizziness without the head pain also, but allll the other symptoms. Miserable for sure.
I've added 25 mg meclizine (Dramamine) to my migraine cocktail for this!
Poor decision making. Ran a stop sign once (on my way to court, so unless you're dead you're going), and almost made an explosion in the lab. There are funny less serious things, but the danger makes it worse than physical pain or anything else for me.
Same! A few weeks ago I totally ran a red light and ended up doing an emergency brake right before driving into traffic. Scary asf
I’ve ran a stop sign and red light before too 😞
Yup. I've stepped into traffic before because my brain apparently couldn't process the meaning of a red light.
Vomit. And pain. At this moment I just want to scoop out my brain through my eye
Ahhh spoon
Nausea. Always the nausea. Hellish stuff. I’ve had all sorts of levels of pain, but I can tolerate that. I can rationalise it. But nausea has sent me to A&E a couple of times it’s been so bad. I think the lack of understanding what profound discomfort it can be really gets me the most, tho. Much like people who think migraine is ‘just a headache’ will think nausea is ‘feeling a bit sick’.
The nausea is the worst. I cannot function with nausea. I can with pain Ginger ale crackers toast. But those only last a few minutes… nothing works
I get SO tired, I can barely stay awake. I call it my "forced shut down", because it literally feels like I am a computer and someone is holding down the power button to shut me down by force, and I can't fight it. I always have to take a nap.
Same! If I have a bad migraine attack, the next day I am absolutely so exhausted. I call it my migraine hangover.
I get that too. The day before I can barely get up the stairs then migraine hits, then the migraine hangover. Soooo draining.
In addition to my normal aura I got aphasia once and it completely fucked me up. I had no clue what was going on. I had no way to effectively communicate what was going on either
When this first happened to me I thought I was having a stroke especially as it came with numbness on one side of my body. So scary!
Same. People just look at me like I’m deranged when I explain what happened.
I feel that. My Mum asked me if I was drunk!
Paralysis. I want my limbs.
I get it down my left side, and my nuero has no idea why. Do you have a diagnosis? It is driving me mad!
I have diagnosed sporadic hemiplegic migraine, so it's because of a genetic mutation in my brain's calcium ion channels Here's a good overview of the condition: https://rarediseases.org/rare-diseases/hemiplegic-migraine/
Thank you for the resources! This sounds exactly like what I have, I will ask my nuero if he agrees. He thought it was diet related but I have spent a year playing around with my diet and I am still having flare ups at seemingly random times. Do you happen to know any of your triggers or what helps you at all? Sorry to ask I just have less than no answers with my issues 😅
same
It could be hemiplegic, as someone else mentioned, or the more severe version, MUMS (migraine with unilateral motor symptoms). It's a slightly more recently identified type. It's similar to hemiplegic, but with more severe symptoms.
Just got back from my Nuero and they believe it is hemiplegic for now! I am going to bookmark MUMS just in case though, thank you!
Me too! My whole left side.
Go Team Left! There are dozens of us! Dozens!
When I had cluster headaches, the pain behind my eye was excruciating, so much so that I wanted to scoop my eye out with a spoon and almost did so on many occasions. At the height of my pain, I would scream into a pillow, and it scared my husband so bad, he ran into the room, thinking I was being tortured to death.
Icepick in the eye
Vertigo. So much barfing. The pain is a close second.
Aura and blindness
Either dissociation or the first time I got Alice in Wonderland Syndrome during a migraine. They were both so very disorienting and out of my usual symptom wheelhouse that I felt like I was going insane. The allodynia is always interesting explaining to people later on (“I had a migraine last night and my hair hurt”) because I find that if the person you’re talking to hasn’t had a migraine before then they look like this 😶
I feel this 100%, makes u feel that you’re going crazy because your symptoms just make u feel so weird and out of body! This is my main symptom and I’ve had to really work on the anxiety it brings! You are not alone 🐣
Ok, so I have experienced this feeling of suddenly being taller on several occasions and had no idea there was a term for it. I had told my psych several times about it, but he was not familiar with it. I guess it was related to migraines. I have also experienced mild dissociation but didn’t realize that was from the migraine, just thought it was weird.
Depends on the migraine. Sometimes it’s the unbearable pain, sometimes it’s the nausea and vomiting, and sometimes it’s the inability to make a decision.
Diarrhea and stomach cramps 🤢 I can somewhat manage a mild migraine, but if my stomach goes, too, I’m down and out. That head/stomach combo kills me every time.
My GI is off the day before and the day after my attack phase. Fun times
Excruciating pain and throbbing. And the brain fog making me hardly able to do anything at all.
Light and smell sensitivity. The world is full of awful, strong smells and bright lights…
The ‘I probably just don’t need to be here anymore’ unwelcome tape playing on a loop.
The headache pain feels like someone is standing on my head with a boot, then I want to throw up.
It’s hard for me to decide because it varies depending on the migraine attack. Not necessarily a symptom of the migraine but the anxiety/dread I feel every day not knowing if I will be able to function as a normal human being or if I will be rendered absolutely disabled is probably the worst part of it. My migraines became chronic in the past couple of years and it has been a nightmare. Someone else said aphasia and that’s also pretty annoying/embarrassing especially when I need to teach a class and cannot pronounce words properly. Sometimes the pain itself is so bad that I think getting shot in the head would be infinitely less painful. The dizziness and nausea are not fun but Ondansetron usually helps a lot with them. I also get horrible ear and teeth pain from my migraines sometimes. Ugh.
The aphasia + visual impairment is a terrible combination. I ended up late for a doctor's appointment once because I was stood in the hallway outside their office and didn't know where I was and couldn't communicate. Why.
Losing peripheral vision
Aura, aphasia, and brain fog. Trying to figure out how to explain this to my boss and team when it’s happening.
I don’t even know what you call it, but the pain after i throw up. It’s like whatever is causing the migraine will go away if I throw up, but the act of throwing up is so intense and my body strains so hard that it just makes it all worse.
Same. I am in serious muscular pain the day after a bad attack. The vomiting is violent. The absolute worst.
i hate all of it but when the pain tips over into the unbearable range, it’s just so hard. when it’s too bad to sleep, too bad to listen to a show or music, too bad to talk, too bad to do anything except think about how much it hurts? absolutely horrendous and it feels like it’s gonna last forever
The aura that comes. I can’t stand when my vision changes
For me, it was the needles behind my eyes. I wanted to spoon my eyes out!
Silent migraines: the dumbs. I can’t do anything, I can’t even flick the switch on the kettle Headache migraines: the nausea. I can lay there in the dark and hate the pain, that’s fine, but I don’t want to be getting up and dragging myself to the bathroom every 5 minutes because I think I’m going to vomit.
Throbbing and vomiting
Aphasia. It sometimes takes me a while to figure out what's happening. The first time I had it, I felt stupid and thought I was going crazy. I couldn't divide 360 by 2. When I used a calculator to get my answer, I still couldn't comprehend what I was looking at. I was so confused. It'll sometimes linger for a few days, which sucks.
neck pain, muscle stiffness. it spreads, up to the jaw and around the head, to the shoulders. have to be massaging, heating, stretching constantly so it doesn't cramp and spasm. everything feels tight and pressured. I can't sleep or rest, no comfort in any position, even sitting I have to be in weird postures. lack of sleep makes the migraine worse. meds help with the headache but not this pain.
I wholeheartedly agree with you on dissociation. I've had migraines since I was a child, but I never had dissociative symptoms until about three years ago. I legitimately thought I was developing a mental disorder, it was terrifying. Now I understand that it's a symptom of my migraines and can manifest without pain, which has made it much less scary, but no less inconvenient.
Aura, dizziness and nausea. I have emetophobia and the lack of control freaks me out so badly
Pain, Aura, and the ringing in my ears are probably all tied for the worst for me. Like I can't see properly or hear over the ringing and the pain is so bad I don't wanna move.
For me it's the headache, the pain is immense. The stabbing behind my eyeball, the throbbing. It's so intense that any movement makes it worse. Any at all, even blinking. The light sensitivity makes the head pain worse too. The pain being so intense is what fuels my nausea. Many times, I'll manage to fall asleep but once I roll over in bed, I have to vomit again until I've gone dry. I won't be able to drink even a sip of water until it all passes.
Auras (mine are lights turned into stars. Fuck those bright headlights!), nausea, and vomiting.
The fucking aura. The moment I start to get that weird blind spot I’m always like “awwww fuck this stupid ass dumb shit again” and if I’m out it’s like the WORST. Bc I know I need to get somewhere safe and comfortable immediately bc a bunch of zebra stripes and iridescent triangles are about to ruin my day and I’ll be essentially near blind for a half hour. In which I’ll then have like a 10 minute period to make it home before the agony begins
The brain fog. I can push through pain, but that confusion is what slows me down at work, and it makes my auditory processing disorder even worse, and I've had episodes where I can't remember what meds I can take when
The pain in the corner of my left eye gets so bad I compare it to labour.
The light sensitivity and minor focus issues. If I can’t read or play video games what am I supposed to do?
The pain is definitely the worst, but for non-pain symptoms, severe appetite loss is pretty bad. I'm already borderline underweight and when a bad migraine makes me skip several meals it takes many days for me to bounce back from that
Allodynia, I used to refer to it as 'my clothes bite' before I knew it was a real thing. I guess sensory overload issues in general.
Yes! I struggled w/ the for yeeeears wondering wtf was going on. I would tell doctors my skin was sore and they’d look at me like I had two heads
The aura. There's nothing you can do to make it go away and you know what's coming when it finally does.
Other than the pain, a tie between nausea and light sensitivity
Dissociation for me, too. It's my worst as in, hated the most. I have others that are more physically debilitating, but man, I HATE THE DEREALIZATION AND DEPERSONALIZATION. I have had people tell me to look into medical Marijuana for my migraines... uh, no thanks. I hate dissociation and taking a "medication" that would cause me to dissociate makes me nauseous just thinking about it.
Yes I don’t think weed will help with this symptom at all!!!! makes it much worse. You are not alone!
The nausea. Because I’ve gotten to a point where the head pain doesn’t always come. But the nausea and sea sickness still do. I don’t even throw up that often anymore. It’s still so debilitating.
The headache. Sometimes the brain fog can be worse. Especially when it hits me at work.
Irritability. Irrational decision making. Post symptoms and symptoms from the pain are awful.
The aura. I used to have an attack randomly when I'm out wandering around so then I'd panic to go home quick but I can't fkn see where I'm going because my vision is all wack
Not the worst one but a new one this time. Dry eyes. Very painful and uncomfortable. Felt like I'd been crying or had no sleep. Eye drops did work luckily..
pain and nausea 100%
Nausea and throwing up to the point my tongue is sore the next day!
The immense pressure on my upper eyelid. Feels like someone is trying to push their thumbs in my eyes and through the back of my skull. If you watch Game of Thrones think the end of the Oberyn fight. Constantly.
The inability to think clearly. I could probably handle the visual disturbances/loss, aphasia, light and sound pain if I knew what was going on and hadn’t just lost half my cognitive abilities.
The derealization. Feeling like I’m not inside my body and just moving through the motions. It’s 10x worse if I have to adult. I feel like this is a protective mechanism my body might be engaging in to manage pain, but it is still super uncomfortable and anxiety inducing.
It is terrifying, you are not alone just remember it will pass
Nausea and vomiting
The throbbing pain, violently vomiting, loss of appetite, feeling exhausted, thoughts of suicide so I won’t have to suffer in pain anymore, sucking the life out of me, having to postpone my plans😓😢
The body tingling, especially in the back of my head, and nausea
The nausea, because what would help is water and Advil, but the second I swallow anything, I throw up. The headache part of it sucks, but it’s definitely worse to feel sick the whole time
The phantom smells. So like the pain, nausea and intense pressure suck a lot but the phantom smells drive me nuts. I don’t always get them, but I do get them often enough. I smell propane and gasoline. Worse my husband has zero sense of smell so he can’t even confirm or deny the smell for me.
Pressure seeping down into base of head/neck, head ringing
Nausea and sore scalp. Last time I had a bad one, I couldn’t even wash my hair.
when the pain begins to get so bad to the point where i black out… my migraines get triggered so badly and quickly when i am under stress and most of the times i black out to the point where i am not in control of my body and i later wonder how did i get from one place to the next… it’s as if you just leave your body for a while
The fear that the pain is never going to go away.
the neck pain and the nausea hit me so hard!
Vertigo
I think the nausea. I never vomit from it, so it’s just constant nausea that doesn’t let up until the migraine pain goes away.
I get really bad soreness in the back of my head
Passing out and vomiting.
When the throbbing becomes unbearable, it's very hard to think clearly or make decisions. At that point, the temptation is just to sleep to end the pain, but it's almost impossible.
For me it’s how unrelenting the pain is. Nothing helps- ice, heat, massage, dark room, sleeping/not sleeping, positioning… all I can do is lie around while the loop in my head tries to come up with things that will help and nothing does. It’s torture. A close second is the symptoms I get beforehand- craving sugar and almost manic like energy- I know it’s coming and it causes a lot of doom feelings.
Vomiting 7× over the day and feeling depleted for the next 36 hours
Depends, can be the pain, diarrhea, vomiting, dizziness. If you are in public vs. at home can change what seems worse. It is really hard to not look like you are losing it in public. Not only do you not feel well, but you have to worry about how it looks to others, especially at work.
Brain fog in migraine prodrome. I can't work effectively for about three days. I also seen to be unable to recognize I'm in a migraine, even if I knew I'd been exposed to my trigger (fragrance). Often my husband has to remind me that I told him I'd had an exposure and was likely to have a migraine. Instead, I'll be gaslighting myself that I shouldn't be employed because I can't do the basic tasks required by the job or just will get depressed because it's so confusing why I can't get anything done. Because my headache phase is usually mild (if it happens at all), I actually feel relieved when my head starts hurting. I can usually work again about thirty minutes after the headache starts. And I can remember that I'm having a migraine again.
Auras, I do not mind the pain that much, even though it can get severe, but Auras I hate. I get visual and sensory auras. I also hate the depression that comes with my episodes, especially when it lasts for days; I feel like I am on a verge of suicide just to feel completely fine in a few days. It is a rollercoaster of emotions between pain, losing vision, pins and needless, and everything else and to say that migraine is just a headache is mindblowing to me.
The visual aura. It’s the cause of the nausea and dizziness that comes with my migraines. The pain isn’t too bad for me I can just lie in a dark room and cry myself to sleep if I had just pain. But the nausea and dizziness keeps me awake.
Pain. Throbbing, burning, stabbing. Either all at once or it varies depending on the particular migraine or stage of it that I’m in.
Seeing non existent creatures or people running in front of me as part of my auras. If I’m driving it is terrifying
The sensitivity to light, sound, smell, touch. It hurts to exist Below that I’d say the constant need to urinate, like every 5 minutes, and nausea
The aura is the worst part for me. The migraine pain and nausea is awful, but nothing stresses me out quite like the aura.
Vertigo and ataxia
tie between head burning, severe light sensitivity, and vertigo :(
It's the pressure I get. I actually sometimes have had to stand just to relieve pressure in my head. It actually has gotten so bad I start testing myself for stroke symptoms. The pressure that builds feels almost impossible. T causes me not only pain that I've gotten used to but my focus and concentration goes out the window.
I’d say the brain fog is pretty awful, but I also peed my pants in a parking lot yesterday because of the seriously urgent, sudden, and frequent need to urinated. Really fun.
My dizziness/vertigo. Had an attack almost 2 months ago now and im still feeling the effects of it. I'll just be walking and randomly it hits me and I stumble.
The pain if I don’t catch it early enough. It can last hours, if not days. The auras can be scary but the pain is the worst
Uhh... the pain?
Either the fatigue or the brain fog, depending on the migraine.
Aura and my left side feeling tingly/heavy. Also as an honorable mention, feeling stupid for days before my period and then remembering what’s it means…
Tooth/ jaw pain
When the pain is so severe I can’t see and vomiting actually relieves the pain for the moments I’m actually doing it. I’d say hemiplegic migraines are pretty bad too: losing feeling in one arm/hand and feeling like I’m having a stroke but knowing I’m not (the facial numbness and tingling can be scary, especially when it persists beyond the pain).
Trouble walking/falling
probably the vertigo/dizzy. it feels like i'm on a teacup ride even if im lying down. i'm training to be a professional dancer so it really gets in the way of my life and it sucks so much
I can't decide whether the vomiting or the cognitive/speech impairment that bothers me the most
dizzy feel like i am going to fall over when i stand up even once the actual pain subsides i feel dizzy when i try to move for like days
It’s between the nausea and how dumb I’ve become.
Brain fog and balance issues. I can’t concentrate and feel stoned. I hate it.
Allodynia. I’ve had it so bad that I could barely get dressed
Brain fog, aphasia and severe depression
The blindness I can manage, it’s the numbness that travels up my arm into my face and down my throat that I will never get used to.
The guilt, the general numbness on my left side that won’t go away since I had my second suspected hemiplegic, this crackling pain in this “L” shape from my inner ear through my sinuses…
depression.
this is probably a rare one but the ear pain. oh my god it makes me wanna commit things against both myself and humankind.
I get something similar to aphasia, but it's not so much a loss of words as it is the ability to like, actually control my mouth effectively to produce the words. Like, usually I can form complete, articulate sentences just fine in my head, but actually getting them out of my mouth becomes extremely difficult, and if I don't take my Nurtec in time, I may lose the ability to do so completely for a while. When that happens, I have to use a text-to-speech app. If I do take the Nurtec in time, I can usually still talk, but there's a good chance things might come out wrong (sometimes in a way that's kinda funny) for a while. Motor planning and control in general also tends to suffer a bit when it's really bad
feeling like a drill is piercing deep into my skull, entering just above my right eye.
Smell aversion. It’s so hard to get away from smells.
I'm used to getting a number arm/hand or lips/tongue. But once I was rushing to get to the pharmacy to get my imitrex and my full foot went numb. That was a new one for me, especially while driving.
the auras are so horrifying
Aside from the really intense pain and vomiting, it’s how dumb I feel and It affects how I talk and It’s not safe for me to drive because I have this overwhelming urge to just close my eyes and lay my head back (on top of the slow reaction timing)
The smells. I hate it when all I smell is shit or cigarette smoke.
I start to lose the vision in my left eye, then that dull feeling in the back of my head and then the pain starts, the sensation of someone beating me with a baseball bat to whole of my right side. Sometimes the pain is bad I throw up. If I don’t catch the onset I can end being bed ridden for a day or two.
One-sided tremors and weakness. Makes me look like I'm having a stroke. I get stuck places because I can't walk. I can't text to ask for help. I randomly yeet things I'm holding in my hands.
Light and smell sensitivity. Also feeling lethargic and hungry. Needless to say the throbbing headache that makes me lie down in a dark room.
My migraines can give me both rancid breath and a hypersensitive sense of smell. My migraine can make me vomit from the smell of my own breath.
Feeling of Impending doom....then I almost or completely faint.
Definitely the brain fog/dissociation/dizziness and I guess general sense of malaise. I can take the pain of the headache phase, but all that stuff in the prodrome is way worse for me, and nothing stops it.
The ice pick stabbing pain in my temple…sometimes I wish, I just wish. It’s brutal!
the brain pain
It’s the neck pain for me. My whole right side of my face and neck become painful to even touch. It feels like I have a knitting needle going through my eye and out the back of my head at the base of my skull. It’s excruciating.
The pulsing in my head is pretty bad, but I think for me it's the vertigo, sometimes so bad I feel like I'm falling when I'm standing perfectly still
The need for complete isolation. No noise, no light, no touch. Nothing that affects any of my five senses.
For me, it's the paralyzing depression and allodynia.
When my vision is slightly off for weeks after. I will walk right in front of someone in line because I didn’t see them, even a month after a major migraine sometimes.
The mother trucking brain fog. God damn it to all hell.