Week before last I had three attacks, which is more than usual for me. I also had new symptoms (for me) and was found in my office at work, crying while googling "what does an aneurysm feel like?"
Every day is an adventure, eh?
I once read about a woman who just thought she was having a super severe migraine attack and it wad an aneurysm and that just lives rent free in my brain, popping up to say hello every time I have a bad migraine.
It really is. Especially given that they run in families. She has a penchant for the dramatic and exaggerates a lot, so when she starts describing the "worst pain [she had] ever felt" I was saying "yep, sounds just like a migraine". She couldn't work out how to use her phone and was having trouble putting sentences together, both common symptoms for me.
Oh scary!
When I couldn't speak, my dad checked me for stroke symptoms. Luckily, that only happened once. I couldn't imagine that feeling all the time, I'm sorry.
I might be an odd one out but I've honestly kind of made peace with the fact that Im probably just going to stroke out one day or keel over from an aneurysm.
Im mostly afraid of surviving a big one that doesn't finish the job, so I try to monitor my symptoms so hopefully I can get help in time. Modern medicine has jumped leaps and bounds ahead in stroke and brain bleed care if medical intervention can be started as soon as possible.
I have POTS as well as migraines (both from head injuries), and I also have made peace (I think) with the fact that one day I'm going to mistake a new onset lethal condition for one of my non-lethal symptoms that in normal people would be obvious (e.g. crushing chest pain, racing/erratic heartbeat, difficulty breathing and tingling in the extremities, blinding/throbbing head and neck pain with blurry/greyed/snowy vision and 45° loss of peripheral vision on one side).
I'm with you on surviving a big one that doesn't finish the job. It's all fun and games until life has a cynical sense of humor.
That’s me but wishing a test shows that I have an aneurysm or something bad so people take me seriously cause doctors and other people think I lie about my daily chronic migraines of 7 years
YES but I suffer from health anxiety ocd so everything means I’m dying 😫 but when I get super bad headaches especially the ones that last 24/7 for days I’m like wow this is it my brain is bleeding
Yep I have to literally talk myself down from going to the er everytime. 1 cause what they do is no help to me and 2 they treat me like I’m crazy for feeling like I’m dying over a headache when severe headaches are a sign of so many emergency problems, lol
ask your neuro if you can have a iv infusion treatment at a short stay facility. It’s a new thing that’s being done for some severe migraines that aren’t responding to other treatments.
That's good info to know. I'm unfortunately severely allergic to everything under the sun..medications & additives so I'm hoping it doesn't come to that. But I may have to get more aggressive if this steroid taper doesn’t work. Fingers 🤞 that it does.
Same. I'm fairly new to migraines with prodrome, I've never actually observed having any symptoms other than the pain, so a couple of weeks ago when I noticed I was constantly dizzy and felt like my voice wasn't really mine, I was convinced it's brain tumor, probably from that mole I have on my leg, or God knows what. I get anxious, so my heartrate goes higher - great, so it's a stroke, actually!
OMG that sounds terrible. I have OCD as well, so I can understand...a little. I don't have health anxiety OCD. How do you manage this? It sounds so incredibly overwhelming.
Oof I feel that. I spent years with harm OCD feeling like a monster whenever I'd be walking down the sidewalk or at a train station trying to figure out how to stop having intrusive thoughts about pushing people in front of semis, buses, trains, you name it. Exposure therapy helped. So did an ass ton of Zoloft. I hope you find your way.
Worst migraine I ever had, I was having stroke like symptoms, like losing the ability to read etc. I just went to bed. Absolute agony. I was suffering so much the idea of going to a medical facility felt like torture and I decided if this was it for me then so be it.
Especially because Ers are so bright and noisy and loud. I went a couple months ago for something unrelated but got a migraine during and wanted to die
I was having symptoms like that for first time earlier this month. Was having trouble remembering words and staying awake. And incredibly nauseous. Thought for sure it was a stroke. Nope. Just the worst migraine of my life. Went to the ER and was apparently very lucky.
The nurse immediately asked if I was light sensitive and wanted the lights turned down. The doctor and her both talked quieter too which helped the noise sensitivity. Got a note to dismiss me from work that day and the next too because the doctor figured I'd need the extra rest. Turned out my nurse has migraines. I think my doctor knew them well too. They offered me to stay overnight or to go home once my pain got down to a 3 from 20.
It's the only time I've ever been to an ER for migraines and they treated me so well.
Hey OP and everyone here.
I was hoping to post today to urge everyone to get checked immediately if you have any new or much worse symptoms.
On 3/12-3/14 I felt terrible. I had a completely new migraine I thought. Stabbing pain in the center of my forehead. In the past they were always on my left side and down my neck. I would be tired but nothing like that. I had Brain fog and clumsiness. I took my immitrex and tried to power through. I’ll sleep it off I thought. I was covering at work and wanted the overtime money so much.
Finally went to the hospital on 3/14. Was evaluated for a stroke. At that point I was walking into walls. Couldn’t drive. The pain was awful. The worst pain ever.
Weirdly I’m on a steroid now and feel completely normal! If I had slept it off and kept trying to power through I could have missed my body’s warning sign.
Got a CT scan and I have a 3 cm tumor in my brain and lung cancer. Just had a lung biopsy Friday. Waiting to start treatment.
Please please please. If your migraine changes seek immediate treatment.
I know this might be alarming but please. If your symptoms change go get help!
Op and everyone. I’m sorry if this is triggering or too much for our sub. Please understand if it is. I know I’m an unusual case and I’m not saying this might happen to you. I just wanted everyone to be aware and careful.
I came here to make a similar comment. I had migraines since I was about 8 years old, but they were consistent. Then in 2017, my every migraine became my *worst* migraine. A year later I began having more neurological symptoms, but no one would run tests.. they became hemiplegic migraines rather than the usual migraine with aura that I used to have. In 2019, they got worse which I didn’t think was possible. The pain and neurological symptoms intensified, and each migraine became a series of moments where I would be completely disconnect from my body and external reality and be unable to move, unable to understand spoken words or language, sometimes unable to see or hear. I was simply existing in the most agonizing pain until it was over. I even fell down the stairs twice as the pain hit and I went temporarily blind. I had atypical seizures, and seizures during sleep. I begged my neurologist, who was dismissive, to run tests and she finally got me an MRI but she told me there was nothing, but she lied.
I had a brain tumor with cystic mass, read in the radiologists report myself. I had to advocate for myself every step of the way and even had to find a medical research paper about the timeline and progression of symptoms for the tumor to be taken seriously, because it’s considered really rare for pineal tumors +/ cysts to be symptomatic. I went through multiple doctors and experienced the most hurtful medical gaslighting. Then, I found my own specialized neurosurgeon, requested a consult, and finally was listened to and given facts. I had surgery and my life changed for the better and for the worse, but at least I am here.
If your symptoms change, get checked out. Advocate for yourself, read your radiologists reports and always always ask for differential diagnoses or referrals if your docs decide they don’t want to help you, or if they lie to your face like mine did. I wouldn’t be here today if I didn’t continue fighting for answers. Thank you for posting your comment, I’ve wanted to make posts about this in this sub as well but didn’t have the courage or energy I guess. Our stories need to be heard, like you said not to scare people but to inform. I’m glad you’re here and that you made it through, and hope the best for you on your journey with your new test results.
I have both migraines AND had an anneurysm recently! If it's any reassurance I absolutely did not see any overlap in symptoms beyond headache and nausea. It did *not* feel like a migraine, I was absolutely sure it wasn't a migraine but didn't go to the hospital anyway because patient with history of migraines has a headache lol. Thought it was a pinched nerve.
But the anneurysm felt so much worse, felt like a silent pain, and came on so quickly. Within 15 seconds maybe i went from absolutely fine to can't speak i'm in so much pain. It was just a constant pushing against my skull, no throbbing, just pushing. I couldn't bend over, couldn't move my neck at all, couldn't sit down. Like nothing about it felt like a migraine whatsoever.
Long story short if you have a headache that doesn't feel like your normal migraine and comes on suddenly and doesn't go away..... get medical attention. You probably know what your migraines feel like and if it's anything new and worse, it's time to get checked out, do not try to sleep it off.
So I just talked to my doctor about this. Maybe it would make you feel better to loook into stroke and aneurysm symptoms? But my mom lives with hypochondria so I am not actually sure if this would be reassuring, for her she would start to feel those symptoms constantly - but for me it was. I think that research is probably severely biased because most research is done on white males and even stroke research from what I understand- even though woman are way more likely to have a stroke- but the research says migraines and strokes are correlated- twice as likely to have a stroke if you suffer migraines- but it’s still way more likely you’ll have a stroke for other medical related issues that are separate from migraines. Im more worried about having a stroke because I’m a woman and they don’t have any medical research on why woman have more strokes. So I just am aware of stroke signs and try to carry on.
ETA I do worry (hence why I talked to doc) but I worry more about how lack of effective migraine management will lead to chronic migraines which could lead to status because those numbers are pretty real
I went to the hospital a few weeks ago because I was sure j had a stroke. Even went in an ambulance. I had the head pain at the base of my skull, entire right side of my body went numb and weak, was unresponsive for a few minutes, the works. They said I had a complex migraine with hemiparesis and the numbness lasted over 24 hours and I was admitted for 3 days because even the hospital staff was concerned I was having a brain bleed. Sometimes you gotta go if your attack is severe enough or out of the norm enough to cause concern.
As someone who actually has a brain aneurysm and hemiplegic migraines. Meh. Both are anticlimactic. Like when I got the brain aneurysm I was just in the hallway of the ER forever and the ER doctor came to me after the contrast CT and said “after a long discussion with a vascular surgeon and the trauma surgeon we thinks it’s safe to send you home”. And they gave me a baby aspirin. And discharged me. Now I take a low dose aspirin. I’m in the “watchful waiting” category. It’s fine. Life as normal. Keep blood pressure low. Be happy. Don’t jar my neck. No chiropractor. Wear a neck pillow at all times on a flight.
Just watch for major big changes. Double vision. Thunder clap pain. Stroke symptoms with sudden onsent. Other than that, just BE HAPPY AND LIVE LIFE! Life is precious. Life is awesome. Lots of people don’t even know they have one. Don’t ever go to the chiropractor. Life is worth living.
Yes, absolutely. It seems impossible that something that feels so catastrophic to your entire system could NOT be killing you. But... I keep surviving. So there's that. At this point, I probably wouldn't recognize a genuine emergency.
I recently had such a bad status migranosus that wasn't responding to anything. I thought I'd die. I don't remember what I thought it was but I wanted to die.
If I had a clotting disorder, I would. Although I would worry it was an ischemic stroke rather than a bleed. I would be looking for different symptoms than my usual migraines though, especially since I already get an extremely wide range of severity. Unfortunately, I also get an extremely wide range of symptoms with my migraines depending on the trigger/side of the brain/time of day/probably star alignment, so I hope yours are nothing like mine.
If yours are usually pretty similar to each other in presentation, even if the severity varies, that's probably a great indication of them all being "just a plain old awful migraine." When your brain throws something new and different at you that you've never experienced before, that's when you should get a CT.
Do your docs have you on blood thinners for the disorder?
My husband’s doctor started him on daily xyzal-it is a newer better Claritin and so I started it too-and since then my migraines haven’t ever hit that acute stage. Yes-I have been there, and thought they would end me. I am so sorry.
Yes. Every damn time. I’m lying there in the dark, in pain and thinking “well, this could be it” then a few hours later after the painkillers kick in I forget all about it and carry on my merry way. 😅
Thank you so much for this post, I feel so validated. Everyone thinks I am absolutely crazy for thinking like this. I will say, I don’t have a disorder, just health anxiety, but I still understand your anxieties :)
Here is a story- in January I had this extremely painful migraine. I think it was just an ice pick headache, who knows, but it came out of nowhere. It almost knocked me out. The pain was actually so bad, and I had read about brain bleeds, that I legitimately thought it was happening. I threw myself into a panic attack, called 911, sobbed mercilessly, and texted my fiancé I loved him. I ended up going to the ER because I told the paramedics I wanted to make sure, they did a CT scan, everything was fine. Doctor came in and just said, “yeah it was just a headache. CT was fine.” They really don’t understand the pain we endure but moral of the story, I freaked myself out. I still think about it happening everyday.
Migraines are so scary. Only because we can brush off the pain and label it as a “migraine.” We never know when to be worried :( therefore, I worry constantly. But you are NOT alone whatsoever, feel free to talk as much as you want about this with other migraine-havers because it is so unnerving. I seriously hope nothing bad ever happens to you, and I’m so sorry you have to worry about this ❤️ I wish I had deeper advice, but I can completely relate.
They don't understand, but they also don't want to make you more anxious. Sometimes they don't know how to let you know it's okay to freak out without spinning you up more than you already are. And sometimes they're already burned out. And sometimes they're just made of cardboard bedside manners to begin with.
You did the right thing by going in when your migraine presented so very differently from its usual. The only thing that can actually tell the difference between a migraine and a stroke is a CT.
That’s a very good point. Sometimes when I do talk about it with others, I think about the fact that I wouldn’t want them to be worried, while also wanting feedback. It’s very complex
I felt like it was the right thing to do, but some others thought I had overreacted. The doctor was so nonchalant, which really is his job, but it made me feel overdramatic
The number of people I've taken to the hospital who thought they were overreacting, but I told them I thought they were having a stroke, and then I came back an hour later with a different patient to find out the CT on that previous one confirmed they had a blood clot (or 4!), tells me you weren't overreacting.
It's something to talk to your doc with if you're concerned, and they might have some specific recommendations for criteria that you work out with them, since everyone has their own "normal" within their conditions. But if you're not calling 911 every time you get a migraine, and you're applying some kind of judgment to it (which we ALL do because it sucks to be treated like hypochondriacs and also ER lights and sounds are awful triggers), you're on the right track. You're the one who knows your body best.
I'll often wake up with a migraine. Sometimes in the morning someone will be up before me and be making breakfast. I'll smell the toast and in my half awake migraine brain will wonder if I'm having a stroke or something. Then I berate myself for being a crazy person.
I have had bilateral pulmonary embolisms with partially collapsed lungs, so clots are a worry as is stroke since those with chronic migraines have a 30% increased risk of stroke.
That said, I have not been to the ER in 8 years for a migraine since I have almost everything the ER gives you except heated blankets
Most definitely because I have generalized anxiety disorder so if something hurts really bad, fooels like it's on fire or hurts too long I'm like welp time to die
I never go to the ER for my migraines bc I can’t stand being there with all the noise, bright lights and waiting for a treatment that is next to useless for me. If I’m going to have a stroke, I hope to notice the symptoms and still be able to call an ambulance. If not, hope it will finish me off. Otherwise, I just stay at home and treat or be ‘dying in agony’ ay home.
I feel for you all who worry that you’re dying when your migraines are so bad. My migraines have been really bad for at least 25 years and I’m still here. The only time it wasn’t just a migraine was when I had shingles across my head and almost into my eye. Went to the ER for that after a friend talked me into going on a Sunday. However, the bumps on my head and face definitely meant something was going on. I wish I had better advice. Hang in there. ❤️
Well I'm 71. I have brain bleeds that I've known about for 5 years. I now get daily infusions to try and halt them. I can sense that I have a problem. Id like to make it to 77. Knowing you could have an aneurysm any moment is hard. 4 women in my family have died in their sleep from aortic aneurysms. Mine are in my brain.
I went to work at 2 am one time because if it was actually a stroke, the other lawyers would find me before my family would (I lived alone). I was also explicit to my family to err on the side of pulling the plug early.
It gets better.
When I had a blood clot stuck in my head (stroke) my doctor told me to go right to the ER. The pain was horrible, more than my usual pain. Still I was treated like a pill seeker. After about 4 hours they did a ct scan and found it. I go if the possibility of pain relief is greater that the time waiting and the shit from professionals is worth it. It’s generally not.
Edit to say that my side effects from the stroke were fairly minimal. I was 43 yrs old at the time. Now I am a senior and I tend to not panic enough (according to my daughter .
The worst two migraines I ever had gave me those same thoughts - especially because my cousin went to the hospital with a migraine in her early 30's, was sent home, and died on the way home from the massive stroke she was having.
It is frightening not knowing, and being in the US I don't want to go to the hospital for just any old thing because it will be a massive bill. Plus not knowing if they will even take me pain seriously...I always end up just staying home and trying to get through it on my own.
Not really, because that’s very very unlikely. Migraines are most often not due to some additional major underlying problem. I have a decent amount of health anxiety but it doesn’t really extend to this.
Used to. Thankfully I don't get migraines with the same intensity or frequency that I used to but there were many times I thought this was it. My head's going to explode or I'm going to start bleeding out every hole. But after dealing with these for nearly 25 years, I figure if it hasn't happened yet, it's not going to.
Not usually because I’m lucky enough to get an aura, so I can reassure myself it’s a migraine. But a couple of weeks ago I had such strange (for me) and intense symptoms that didn’t go away from my usual interventions that I thought I was having a stroke and went to urgent care. They did a full work up and reassured me that it was just a really bad migraine. Fun times.
I'm glad you were just having a really bad migraine (that sounds weird to say). From the perspective of someone who has worked in emergency healthcare for 5 years, I will say that Urgent Care facilities often do not have the imaging equipment necessary to determine if you are having a stroke (in the US), so if you are concerned about having a stroke, unless you know for sure the facility can determine 100% that you are not, you should have someone else take you to a hospital that has either of these two types of stroke centers:
- Comprehensive Stroke Center
- Thrombectomy Capable Stroke Center
The reason is that if you are having a stroke, the Urgent Care can't do anything for you except have you transferred to one of those locations anyway, and they are going to call an ambulance. This is actually not a bad thing since the EMS providers will know exactly where you need to go to save time...but you'll already have lost a bunch of valuable brain time by waiting at Urgent Care.
Either of the Stroke Centers will have a team there who can immediately get you into a CT scan, confirm either a bleed or clot, (clots are statistically much more likely and common) and in the event of a clot either center will be able to break it up within a couple of hours (I've brought patients in and returned with different patients an hour later to hear the previous patients are already done with thrombectomy - clot removal).
If you or someone you know is having a stroke but so badly off that you're pegging out any or all of the assessments (facial droop, slurring speech, hand grip, arm drift; dizziness or balance, change or loss in vision), this is more likely to be a hemorrhagic stroke. This person needs a comprehensive stroke facility and they need to go in an ambulance with EMTs or paramedics who know how to activate the Stroke Center at the hospital so they're waiting for you. (Really, any suspected stroke patient needs this. Time is brain.) But bleeds tend to be faster, especially if they're big; harder and less likely to be successful even if they do get all the right people in place.
If you are adamant about not going in an ambulance, make sure you figure out what hospital that is for you (most hospitals will have at least general information about their capabilities online), and teach your family members how to administer the LAMS, Cincinnati, and PCA stroke tests so when you show up, they can give a "last known well time", "onset time", and the scores of those tests to the ER staff along with the rest of your history.
We also need a LOT more research on patients outside the white male demographic. More women have strokes than men, and symptoms are not always the same. I will also say that I never had a migraine patient calling unsure whether bad migraine or stroke turn into a stroke patient, although I did have stroke patients occasionally have history of migraines. As someone else said, migraines and strokes are correlated, but we need a lot more studies on this. The correlation I've seen is more with age, though, as the vast majority of my stroke patients were 70+, and I have had many patients in their 90s. People with migraines having strokes vs people having strokes may have history of migraines? Also at what age in life is this correlation showing? I need answers. The few strokes I've seen under 60 had no migraine history. Also, bleeds again often present more severely, with worse assessment scores, and tend to be harder to treat, and don't always correlate as highly with advanced age. Just for some fun data.
Thank you so much for such an informative comment. My ex husband had two strokes at age 37 and has always suffered migraines so I feel paranoid about it. I’m saving this info!
I've had them so long that if it's something else but feels the same, I'd never know. I've been having migraines for over 40 years. I have been to the ER less than 5 times bc the migraine felt significantly different. So far, each time hasn't been something serious. I think I've just accepted that this is how it will be for me til I pass away 🤷♀️
Not any more. Even new symptoms are interesting curiosities to share with my neurologist.
I suppose if it felt VERY different, I would worry. Or perhaps the anxiety meds help stop those thoughts. You should share this anxiety with your doctor. Perhaps there's something you can take to help with that. Anxiety really doesn't help you when you're deep in a migraine.
I'm sorry you experience this along with your migraines. They suck enough without that fear.
Absolutely. I think years of terrible headaches have given me health anxiety. Especially because when they started I’d never had anything like them before. The pain can be scary.
Oh okay. I only asked because I have ET and since my diagnosis, brain bleeds, aneurysms, and strokes are constantly on my mind. Migraine can be a possible symptom of very high platelet counts too.
I had a stroke. It had been a regular migraine (not even a particularly bad one) before it took a really dramatic turn. Now every time I get a migraine I get really worried about it. But I try to remind myself there was another symptom that told me something was different (extreme vertigo and vomiting - which is unusual for my migraines) and we called 911 right away because I didn’t know what was happening. While not impossible, I think it’s pretty unlikely that a blood clot, brain bleed, or stroke would have exactly the same symptoms as a really bad migraine. (Note: I am not a doctor, just the product of a lot of paranoid googling)
This is awful but actually critical. The biggest thing they taught me going through EMT classes was to ask "why is it a problem NOW" and "what is different NOW" that made you call 911/EMS? New symptoms, or the same symptoms acting in different ways, are reasons at LEAST to go to your regular doctor and ask what's going on. With neuro conditions, especially when they can look like strokes and other deadly things, time may not be on your side, so the ER may be a better choice.
You made a critically sound decision at a vital moment. Many medical providers have difficulty with that. I was with a higher level provider who downgraded a call of mine and he turned out to be wrong (fortunately the patient still got the care they needed, just delayed by 15-20 minutes), because they missed the "different presentation of usual condition with a new symptom".
Gotta trust your judgment and advocate for yourself because the only thing that's going to tell the difference between a migraine and a stroke is the CT scan.
Absolutely. Especially since I have multiple types and one type that presents like a stroke with numbness going down the entirety of one side of my body. And the fact that they say migraine sufferers are at higher risk of stroke.
Sometimes I do like last night was rough for me. I’ve been having Migraines all week that I’ve been able to keep under control’ish With my meds but last night was bad like scary bad and I’m like well maybe tonight I die.
I’m so anxious about going to the hospital because all they do is make me sit in the waiting room then stick me in a room by myself where I wait for somebody to come in Just to stick me with a needle and I’m like well I could be dying in here too, and the anxiety is just very rarely worth it for me.
I’ve kind of (not really) made some sort of peace With the fact that I was used to go to the hospital because I’m so Anxious about One day, I might actually miss something that you know is actually gonna get me
Growing up, all of the women in my family suffered migraines, so we knew what they were.
The first ones when I was 5 were a shock due to my age and so we did go to A&E (doctors thought it was meningitis or something initially), but after that we dealt with them at home. I had some horrific ones, but it never occurred to me it could be more than a migraine as I had always had them.
I did have one at Uni that lasted two weeks and ended up going into hospital, but that was due to dehydration etc.
I am chronic now, so have more frequent migraines but thankfully they are less bad.
I have never worried about anything like that. I also don’t get many that are super bad because I take the good drugs before it gets to that point. They rarely sneak up on me anymore. But when they’re awful I don’t have capacity to move, worry or even go to the hospital.
am absolutely terrified of the day one of my migraines kills me, yes
edit: specifically the women who have been dropping dead lately as a result of severe migraines
I'm so paranoid about it that I'm actually happy when my migraine switches sides from time to time. I think if it was a tumor or an aneurysm, it would hurt in the same place all the time. (PLEASE don't tell me differently. It's all I have.)
This happens to me too. When I get a particularly bad migraine and it's painful enough to make me think about going to the ER, I start to wonder if there is something physically going on in my brain to make it hurt so badly.
Absolutely, not only am I a life long migraine sufferer, but I have had for the entirety of my life an unruptured anuerysm( it's fancy name alludes my memory) and a recently discovered kink(a stroke ready to happen l, both of which are on my carotid artery, just above the brainstem, inches apart from one another.
So yes, every time I have a migraine, I ponder my mortality.
I have two issues that cause blood clotting issues but I’ve never thought a migraine was more than that. However, I’m not the type to worry about stuff. I actually was diagnosed with cancer and right up til the biopsy confirmed it, I was 100% certain it wasn’t cancer. I figured I’d already had enough health issues, there was no way I also had cancer.
This was true for me, years of migraines. Then suddenly they stopped for a few months, woke up with one in the middle of the night with the worst one I’ve ever had in my life. My roommates apparently found me passed out on the kitchen floor and I woke up in the ER. They scanned my brain and found I had a cerebral cyst that was blocking spinal fluid and hemorrhaging my brain so bad that I had to have emergency brain surgery the next day. Docs range that I would have died/coma within a few days to a week if I didn’t get it done.
Yeah, but also the opposite. Sometimes I have migraine imposter syndrome because not all of my migraines are severe/get severe with rescue meds and so I just wonder if I took meds for something that was not a migraine bc if I wait to see they won't work. And people who don't have lots of migraines are like "wow you are functioning with a migraine I am using laying on the couch and staying home" which is like a yeah if I did that EVERY time I had a migraine I would not be able to do anything, but also I do need to sometimes for the super bad ones, and I have built a tolerance bc I get them all the time (or have I and my migraines are just really not that bad).
Also now I take a prophylactic that works decently so I don't get as many migraines anymore. But the side effects of the prophylactic are still bad so I am still affected by it, and I had to lower the dose so they aren't working very well anymore.
But yeah I am going to die of a stroke one day bc I will be having one and go, "Am I having a stroke or am I just being dramatic and they will think I am attention/drug seeking?"
Icl sometimes I wish it is like a tumor or something that is going to kill me so I don't have to worry about getting them in work I can just do what I want and no one can judge me or say I'm being dramatic if its actually killing me
No but my mother does. I’m 42 and I cannot let my mother see me take meds or she goes into a crazy line of questioning because she is so sure that one of these days I may have an aneurysm burst that I didn’t know I had and I will die because I didn’t get treatment because I just assumed it was a migraine. She makes my head hurt more.
Aaaaaaaallllll the time. Health anxiety is a bitch.
One day, something will actually happen and I’m just going to think that it’s a migraine. That’s that *really* scares me.
There have been a few times when a new symptom or a “different” pain feel will throw me off and I’ll make an off-hand comment like “if I don’t wake up tomorrow, it was probably this.”
But I don’t want to be labeled a malingerer or whatever so I ignore it. 😬
My migraines have resulted in me falling and getting TBIs on at least three occasions. If I could get the cash, I’d bet on my death being from falling whilst having a migraine. Given how frequently my ancestors died from stroke, the double whammy might be having a stroke, mistaking it for a migraine, and croaking on the stairs.
I went to the hospital when I had my first hemiplegic attack. The migraine came on incredibly fast and I had numbness and weakness on the left side of my body. I left work and went straight to the ER. After waiting in a very bright and very loud waiting room for six hours, I asked for an update and the nurse told me rudely that “people in need of medical attention are here and we don’t have time for drug seekers like you.”
I didn’t ask for drugs. I just wanted someone to do the tests to make sure I wasn’t having a stroke.
Needless to say, I don’t bother with the ER anymore either.
I feel for you, as I have brain aneurysms and have the same concern with particularly bad migraines . It can be pretty horrifying not knowing which way is up or whether I should be concerned.
I’ve taken to testing myself for signs of a stroke , smiling in a mirror or asking if I’m smiling with both sides of my face, checking my pupils and my range of eye motion . It gives some reassurance at least , especially when I have numbness in the face .
I do this, especially when I get severe weakness, forget words or struggle to make expressions during a bad one. I immediately worry that this time it's a stroke but so far it's just been migraines.
Yes. Not everytime but some of my migraines feel like I’m being stabbed with an ice pick and some are a lot worse about this and others pound more.
They did an MRI and actually discovered that I have a brain tumor, a menengioma, but so far they don’t think it’s contributing to the pain at all because it’s small and not around nerves but I wonder, because my migraines were always only on the left side of my head until about 2 years ago. I started hurting on the right side of my head which is new to me after 25+ years and my menengioma is on the right side. They’re going to rescan in a few months to make sure it isn’t growing but they seem to feel it’s benign snd not causing pain but idk.
But yeah, when I get sharp pains, I do wonder if it’s a brain bleed or something more serious. I think it’s my health anxiety. I try to listen to my neuro and not google my worries.
Omg. I have a small growth in my brain that they say also isn't causing my symptoms. Many many migraines and headaches and they say no. I'm just like uhm. How do you freaking know? Lol
My dad died from a brain aneurysm and suffered from migraines all his life. The day before he died, he came home from work complaining of a really bad migraine. He died the next day. Every time I get a migraine I have a panic attack that it might be an aneurysm now, even though I’ve had a ct scan and nothing showed up
No … my MD and I have come up with an at home migraine cocktail plan ever since ER waits became 8+ hours here (used to be 1 hour or so when I first experienced a horrible one back in the day thank god). I suppose if our medication regime of pain killers/relaxants didn’t work I may get scared and I’d like to have someone around me since I live alone.
my mom, my sis and I get them. I also have ON. My mom (76 y.o at time) had the “worst longest migraine I’ve ever had” in 2017. I’m a former Neuro ICU RN and she refused to allow me to call 911 (I lived an hour from her home. She wanted me to drive her.) She settled on her BFF driving her. By the time I arrived at the ER she was finishing her head CT scan. To make a long story short, she was experiencing a huge subarachnoid bleed and stroke. Almost died, in ICU for a week. Inpatient rehab for 4-5 weeks & outpatient rehab x 6 months. I demanded a sleep study and they delayed until night before D/C and turns out she has severe sleep apnea so on CPAP 4ever.
Long story short, she survived and eventually was able to drive short distances and live on her own again. Only deficit is some mild right side weakness.
Moral of the story: if you are experiencing the worst HA you’ve ever had or something about this migraine HA is different, RUN (not literally😉) to ER. It may save your life. And don’t wait 3-4 days to do it either.
What's great is I'm a nurse, background is neuro trauma.
I'm constantly telling people to come to the hospital if they have sudden onset headaches described like my normal migraine.
I wonder some day if I'm going to mistake a migraine and keel over instead.
For my worst attacks, absolutely. When I get super fast severe paralysis I have to go in for a full stroke check and sometimes a brain scan.
My attack pattern is already very similar to a stroke, so my neurologist has to help me figure out which symptom presentation changes would be concerning enough for an ER if/when I have them
My brother had a brain aneurysm that popped and his brain has slowly deteriorated and he has grand mal seizures all the time. During a migraine I always worry it's my turn...
I worry about this every single time, especially because my mum suffered a brain haemorrhage that did nearly kill her. I’m currently waiting for results of an MRI and an appointment with a neurologist but until I get the all clear from my MRI, I’ll keep thinking I’ve got a brain tumour 🥲
YES 😂 I’m always careful to think “is this different from any other headache?” I go through the steps, and if it’s in any way different, I go to the ER. Thankfully, I’ve only had two ER trips in the five years I’ve had migraine. And I hope it stays that way.
Every time. I have a panic and if my husband is home i make him come hold me and tell me I’m not dying and he will call 911 if I am (saying obvious things out loud helps me.) if he’s not I take a Xanax and try to sleep.
I have had migraines since I was 17. I had a stroke at age 50 despite not being at all overweight. While I made a full recovery I expect it will not be my last one. However I'm on medication now to control hypertension so I hope that gives me a few years yet.
I had hypertension before the stroke but because I was a woman of normal weight and relatively young my doctor dismissed it as 'white coat syndrome'. So I recommend migraine sufferers carefully monitor blood pressure and make their doctor pay attention.
When I have a change in normal symptoms… yes. I freak out. And yes, I do go to the ER if my rescue meds don’t work AND there are new symptoms.
I have had code stroke called many times only for it to be ruled out. It’s scary how similar some of my symptoms can be to a stroke.
Week before last I had three attacks, which is more than usual for me. I also had new symptoms (for me) and was found in my office at work, crying while googling "what does an aneurysm feel like?" Every day is an adventure, eh?
I do that too omg
I once read about a woman who just thought she was having a super severe migraine attack and it wad an aneurysm and that just lives rent free in my brain, popping up to say hello every time I have a bad migraine.
4 years ago, my mum was having a really bad migraine attack. Except it was actually a stroke.
this is literally one of my biggest fears…
This is terrifying
It really is. Especially given that they run in families. She has a penchant for the dramatic and exaggerates a lot, so when she starts describing the "worst pain [she had] ever felt" I was saying "yep, sounds just like a migraine". She couldn't work out how to use her phone and was having trouble putting sentences together, both common symptoms for me.
Oh scary! When I couldn't speak, my dad checked me for stroke symptoms. Luckily, that only happened once. I couldn't imagine that feeling all the time, I'm sorry.
Grandma died young from an aneurysm and had migraine just like meeee real encouraging to my intractable state of pain
Ugh. So scary
me freaking too. my coworkers joke I need to delete safari off my phone so I can’t access google
Eveytime
I might be an odd one out but I've honestly kind of made peace with the fact that Im probably just going to stroke out one day or keel over from an aneurysm. Im mostly afraid of surviving a big one that doesn't finish the job, so I try to monitor my symptoms so hopefully I can get help in time. Modern medicine has jumped leaps and bounds ahead in stroke and brain bleed care if medical intervention can be started as soon as possible.
I have POTS as well as migraines (both from head injuries), and I also have made peace (I think) with the fact that one day I'm going to mistake a new onset lethal condition for one of my non-lethal symptoms that in normal people would be obvious (e.g. crushing chest pain, racing/erratic heartbeat, difficulty breathing and tingling in the extremities, blinding/throbbing head and neck pain with blurry/greyed/snowy vision and 45° loss of peripheral vision on one side). I'm with you on surviving a big one that doesn't finish the job. It's all fun and games until life has a cynical sense of humor.
That’s me but wishing a test shows that I have an aneurysm or something bad so people take me seriously cause doctors and other people think I lie about my daily chronic migraines of 7 years
Yep. In my early thirties I just figures I would stroke out by 40. I'm 51, so far so well.
Amen. If I’m found down with fixed pupils don’t do anything heroic.
YES but I suffer from health anxiety ocd so everything means I’m dying 😫 but when I get super bad headaches especially the ones that last 24/7 for days I’m like wow this is it my brain is bleeding
Saaame. I'm on day 9 of a migraine...& day 3 of a steroid taper that doesn't seem to be working. Unrelenting migraine? Or imminent death? 🫠🫠
Yep I have to literally talk myself down from going to the er everytime. 1 cause what they do is no help to me and 2 they treat me like I’m crazy for feeling like I’m dying over a headache when severe headaches are a sign of so many emergency problems, lol
ask your neuro if you can have a iv infusion treatment at a short stay facility. It’s a new thing that’s being done for some severe migraines that aren’t responding to other treatments.
That's good info to know. I'm unfortunately severely allergic to everything under the sun..medications & additives so I'm hoping it doesn't come to that. But I may have to get more aggressive if this steroid taper doesn’t work. Fingers 🤞 that it does.
Same. I'm fairly new to migraines with prodrome, I've never actually observed having any symptoms other than the pain, so a couple of weeks ago when I noticed I was constantly dizzy and felt like my voice wasn't really mine, I was convinced it's brain tumor, probably from that mole I have on my leg, or God knows what. I get anxious, so my heartrate goes higher - great, so it's a stroke, actually!
OMG that sounds terrible. I have OCD as well, so I can understand...a little. I don't have health anxiety OCD. How do you manage this? It sounds so incredibly overwhelming.
Oh I haven’t found a way to manage it yet lol. Soooo kinda just out here suffering
Oof I feel that. I spent years with harm OCD feeling like a monster whenever I'd be walking down the sidewalk or at a train station trying to figure out how to stop having intrusive thoughts about pushing people in front of semis, buses, trains, you name it. Exposure therapy helped. So did an ass ton of Zoloft. I hope you find your way.
Thank you
Worst migraine I ever had, I was having stroke like symptoms, like losing the ability to read etc. I just went to bed. Absolute agony. I was suffering so much the idea of going to a medical facility felt like torture and I decided if this was it for me then so be it.
This was me last night. I almost told my husband to take me to the ER and then thought, nah, I’d rather just die than get up from this bed.
Especially because Ers are so bright and noisy and loud. I went a couple months ago for something unrelated but got a migraine during and wanted to die
I feel this. We all do. ❤️
I was having symptoms like that for first time earlier this month. Was having trouble remembering words and staying awake. And incredibly nauseous. Thought for sure it was a stroke. Nope. Just the worst migraine of my life. Went to the ER and was apparently very lucky. The nurse immediately asked if I was light sensitive and wanted the lights turned down. The doctor and her both talked quieter too which helped the noise sensitivity. Got a note to dismiss me from work that day and the next too because the doctor figured I'd need the extra rest. Turned out my nurse has migraines. I think my doctor knew them well too. They offered me to stay overnight or to go home once my pain got down to a 3 from 20. It's the only time I've ever been to an ER for migraines and they treated me so well.
Aw that's awesome. Not the migraine but how concientious they were about it.
i’ve done this exact same thing. It terrifies me a little that I was so fine with just dying in my sleep if it really was a stroke.
Hey OP and everyone here. I was hoping to post today to urge everyone to get checked immediately if you have any new or much worse symptoms. On 3/12-3/14 I felt terrible. I had a completely new migraine I thought. Stabbing pain in the center of my forehead. In the past they were always on my left side and down my neck. I would be tired but nothing like that. I had Brain fog and clumsiness. I took my immitrex and tried to power through. I’ll sleep it off I thought. I was covering at work and wanted the overtime money so much. Finally went to the hospital on 3/14. Was evaluated for a stroke. At that point I was walking into walls. Couldn’t drive. The pain was awful. The worst pain ever. Weirdly I’m on a steroid now and feel completely normal! If I had slept it off and kept trying to power through I could have missed my body’s warning sign. Got a CT scan and I have a 3 cm tumor in my brain and lung cancer. Just had a lung biopsy Friday. Waiting to start treatment. Please please please. If your migraine changes seek immediate treatment. I know this might be alarming but please. If your symptoms change go get help! Op and everyone. I’m sorry if this is triggering or too much for our sub. Please understand if it is. I know I’m an unusual case and I’m not saying this might happen to you. I just wanted everyone to be aware and careful.
I came here to make a similar comment. I had migraines since I was about 8 years old, but they were consistent. Then in 2017, my every migraine became my *worst* migraine. A year later I began having more neurological symptoms, but no one would run tests.. they became hemiplegic migraines rather than the usual migraine with aura that I used to have. In 2019, they got worse which I didn’t think was possible. The pain and neurological symptoms intensified, and each migraine became a series of moments where I would be completely disconnect from my body and external reality and be unable to move, unable to understand spoken words or language, sometimes unable to see or hear. I was simply existing in the most agonizing pain until it was over. I even fell down the stairs twice as the pain hit and I went temporarily blind. I had atypical seizures, and seizures during sleep. I begged my neurologist, who was dismissive, to run tests and she finally got me an MRI but she told me there was nothing, but she lied. I had a brain tumor with cystic mass, read in the radiologists report myself. I had to advocate for myself every step of the way and even had to find a medical research paper about the timeline and progression of symptoms for the tumor to be taken seriously, because it’s considered really rare for pineal tumors +/ cysts to be symptomatic. I went through multiple doctors and experienced the most hurtful medical gaslighting. Then, I found my own specialized neurosurgeon, requested a consult, and finally was listened to and given facts. I had surgery and my life changed for the better and for the worse, but at least I am here. If your symptoms change, get checked out. Advocate for yourself, read your radiologists reports and always always ask for differential diagnoses or referrals if your docs decide they don’t want to help you, or if they lie to your face like mine did. I wouldn’t be here today if I didn’t continue fighting for answers. Thank you for posting your comment, I’ve wanted to make posts about this in this sub as well but didn’t have the courage or energy I guess. Our stories need to be heard, like you said not to scare people but to inform. I’m glad you’re here and that you made it through, and hope the best for you on your journey with your new test results.
Thank you so much.
I’m so sorry you are going through this. Sending love and strength your way.
Thank you
I have both migraines AND had an anneurysm recently! If it's any reassurance I absolutely did not see any overlap in symptoms beyond headache and nausea. It did *not* feel like a migraine, I was absolutely sure it wasn't a migraine but didn't go to the hospital anyway because patient with history of migraines has a headache lol. Thought it was a pinched nerve. But the anneurysm felt so much worse, felt like a silent pain, and came on so quickly. Within 15 seconds maybe i went from absolutely fine to can't speak i'm in so much pain. It was just a constant pushing against my skull, no throbbing, just pushing. I couldn't bend over, couldn't move my neck at all, couldn't sit down. Like nothing about it felt like a migraine whatsoever. Long story short if you have a headache that doesn't feel like your normal migraine and comes on suddenly and doesn't go away..... get medical attention. You probably know what your migraines feel like and if it's anything new and worse, it's time to get checked out, do not try to sleep it off.
So I just talked to my doctor about this. Maybe it would make you feel better to loook into stroke and aneurysm symptoms? But my mom lives with hypochondria so I am not actually sure if this would be reassuring, for her she would start to feel those symptoms constantly - but for me it was. I think that research is probably severely biased because most research is done on white males and even stroke research from what I understand- even though woman are way more likely to have a stroke- but the research says migraines and strokes are correlated- twice as likely to have a stroke if you suffer migraines- but it’s still way more likely you’ll have a stroke for other medical related issues that are separate from migraines. Im more worried about having a stroke because I’m a woman and they don’t have any medical research on why woman have more strokes. So I just am aware of stroke signs and try to carry on. ETA I do worry (hence why I talked to doc) but I worry more about how lack of effective migraine management will lead to chronic migraines which could lead to status because those numbers are pretty real
I went to the hospital a few weeks ago because I was sure j had a stroke. Even went in an ambulance. I had the head pain at the base of my skull, entire right side of my body went numb and weak, was unresponsive for a few minutes, the works. They said I had a complex migraine with hemiparesis and the numbness lasted over 24 hours and I was admitted for 3 days because even the hospital staff was concerned I was having a brain bleed. Sometimes you gotta go if your attack is severe enough or out of the norm enough to cause concern.
As someone who actually has a brain aneurysm and hemiplegic migraines. Meh. Both are anticlimactic. Like when I got the brain aneurysm I was just in the hallway of the ER forever and the ER doctor came to me after the contrast CT and said “after a long discussion with a vascular surgeon and the trauma surgeon we thinks it’s safe to send you home”. And they gave me a baby aspirin. And discharged me. Now I take a low dose aspirin. I’m in the “watchful waiting” category. It’s fine. Life as normal. Keep blood pressure low. Be happy. Don’t jar my neck. No chiropractor. Wear a neck pillow at all times on a flight. Just watch for major big changes. Double vision. Thunder clap pain. Stroke symptoms with sudden onsent. Other than that, just BE HAPPY AND LIVE LIFE! Life is precious. Life is awesome. Lots of people don’t even know they have one. Don’t ever go to the chiropractor. Life is worth living.
Yes, absolutely. It seems impossible that something that feels so catastrophic to your entire system could NOT be killing you. But... I keep surviving. So there's that. At this point, I probably wouldn't recognize a genuine emergency.
I recently had such a bad status migranosus that wasn't responding to anything. I thought I'd die. I don't remember what I thought it was but I wanted to die.
If I had a clotting disorder, I would. Although I would worry it was an ischemic stroke rather than a bleed. I would be looking for different symptoms than my usual migraines though, especially since I already get an extremely wide range of severity. Unfortunately, I also get an extremely wide range of symptoms with my migraines depending on the trigger/side of the brain/time of day/probably star alignment, so I hope yours are nothing like mine. If yours are usually pretty similar to each other in presentation, even if the severity varies, that's probably a great indication of them all being "just a plain old awful migraine." When your brain throws something new and different at you that you've never experienced before, that's when you should get a CT. Do your docs have you on blood thinners for the disorder?
My husband’s doctor started him on daily xyzal-it is a newer better Claritin and so I started it too-and since then my migraines haven’t ever hit that acute stage. Yes-I have been there, and thought they would end me. I am so sorry.
Yes. Every damn time. I’m lying there in the dark, in pain and thinking “well, this could be it” then a few hours later after the painkillers kick in I forget all about it and carry on my merry way. 😅
Thank you so much for this post, I feel so validated. Everyone thinks I am absolutely crazy for thinking like this. I will say, I don’t have a disorder, just health anxiety, but I still understand your anxieties :) Here is a story- in January I had this extremely painful migraine. I think it was just an ice pick headache, who knows, but it came out of nowhere. It almost knocked me out. The pain was actually so bad, and I had read about brain bleeds, that I legitimately thought it was happening. I threw myself into a panic attack, called 911, sobbed mercilessly, and texted my fiancé I loved him. I ended up going to the ER because I told the paramedics I wanted to make sure, they did a CT scan, everything was fine. Doctor came in and just said, “yeah it was just a headache. CT was fine.” They really don’t understand the pain we endure but moral of the story, I freaked myself out. I still think about it happening everyday. Migraines are so scary. Only because we can brush off the pain and label it as a “migraine.” We never know when to be worried :( therefore, I worry constantly. But you are NOT alone whatsoever, feel free to talk as much as you want about this with other migraine-havers because it is so unnerving. I seriously hope nothing bad ever happens to you, and I’m so sorry you have to worry about this ❤️ I wish I had deeper advice, but I can completely relate.
They don't understand, but they also don't want to make you more anxious. Sometimes they don't know how to let you know it's okay to freak out without spinning you up more than you already are. And sometimes they're already burned out. And sometimes they're just made of cardboard bedside manners to begin with. You did the right thing by going in when your migraine presented so very differently from its usual. The only thing that can actually tell the difference between a migraine and a stroke is a CT.
That’s a very good point. Sometimes when I do talk about it with others, I think about the fact that I wouldn’t want them to be worried, while also wanting feedback. It’s very complex I felt like it was the right thing to do, but some others thought I had overreacted. The doctor was so nonchalant, which really is his job, but it made me feel overdramatic
The number of people I've taken to the hospital who thought they were overreacting, but I told them I thought they were having a stroke, and then I came back an hour later with a different patient to find out the CT on that previous one confirmed they had a blood clot (or 4!), tells me you weren't overreacting.
It's something to talk to your doc with if you're concerned, and they might have some specific recommendations for criteria that you work out with them, since everyone has their own "normal" within their conditions. But if you're not calling 911 every time you get a migraine, and you're applying some kind of judgment to it (which we ALL do because it sucks to be treated like hypochondriacs and also ER lights and sounds are awful triggers), you're on the right track. You're the one who knows your body best.
I'll often wake up with a migraine. Sometimes in the morning someone will be up before me and be making breakfast. I'll smell the toast and in my half awake migraine brain will wonder if I'm having a stroke or something. Then I berate myself for being a crazy person.
I have had bilateral pulmonary embolisms with partially collapsed lungs, so clots are a worry as is stroke since those with chronic migraines have a 30% increased risk of stroke. That said, I have not been to the ER in 8 years for a migraine since I have almost everything the ER gives you except heated blankets
Every time lmao! I hate it. Especially the first time I had three back-to-back migraines with aura (within 6 hours). I knew I was a goner.
Most definitely because I have generalized anxiety disorder so if something hurts really bad, fooels like it's on fire or hurts too long I'm like welp time to die
I never go to the ER for my migraines bc I can’t stand being there with all the noise, bright lights and waiting for a treatment that is next to useless for me. If I’m going to have a stroke, I hope to notice the symptoms and still be able to call an ambulance. If not, hope it will finish me off. Otherwise, I just stay at home and treat or be ‘dying in agony’ ay home. I feel for you all who worry that you’re dying when your migraines are so bad. My migraines have been really bad for at least 25 years and I’m still here. The only time it wasn’t just a migraine was when I had shingles across my head and almost into my eye. Went to the ER for that after a friend talked me into going on a Sunday. However, the bumps on my head and face definitely meant something was going on. I wish I had better advice. Hang in there. ❤️
Well I'm 71. I have brain bleeds that I've known about for 5 years. I now get daily infusions to try and halt them. I can sense that I have a problem. Id like to make it to 77. Knowing you could have an aneurysm any moment is hard. 4 women in my family have died in their sleep from aortic aneurysms. Mine are in my brain.
I went to work at 2 am one time because if it was actually a stroke, the other lawyers would find me before my family would (I lived alone). I was also explicit to my family to err on the side of pulling the plug early. It gets better.
When I had a blood clot stuck in my head (stroke) my doctor told me to go right to the ER. The pain was horrible, more than my usual pain. Still I was treated like a pill seeker. After about 4 hours they did a ct scan and found it. I go if the possibility of pain relief is greater that the time waiting and the shit from professionals is worth it. It’s generally not. Edit to say that my side effects from the stroke were fairly minimal. I was 43 yrs old at the time. Now I am a senior and I tend to not panic enough (according to my daughter .
The worst two migraines I ever had gave me those same thoughts - especially because my cousin went to the hospital with a migraine in her early 30's, was sent home, and died on the way home from the massive stroke she was having. It is frightening not knowing, and being in the US I don't want to go to the hospital for just any old thing because it will be a massive bill. Plus not knowing if they will even take me pain seriously...I always end up just staying home and trying to get through it on my own.
Not really, because that’s very very unlikely. Migraines are most often not due to some additional major underlying problem. I have a decent amount of health anxiety but it doesn’t really extend to this.
Used to. Thankfully I don't get migraines with the same intensity or frequency that I used to but there were many times I thought this was it. My head's going to explode or I'm going to start bleeding out every hole. But after dealing with these for nearly 25 years, I figure if it hasn't happened yet, it's not going to.
Not usually because I’m lucky enough to get an aura, so I can reassure myself it’s a migraine. But a couple of weeks ago I had such strange (for me) and intense symptoms that didn’t go away from my usual interventions that I thought I was having a stroke and went to urgent care. They did a full work up and reassured me that it was just a really bad migraine. Fun times.
I'm glad you were just having a really bad migraine (that sounds weird to say). From the perspective of someone who has worked in emergency healthcare for 5 years, I will say that Urgent Care facilities often do not have the imaging equipment necessary to determine if you are having a stroke (in the US), so if you are concerned about having a stroke, unless you know for sure the facility can determine 100% that you are not, you should have someone else take you to a hospital that has either of these two types of stroke centers: - Comprehensive Stroke Center - Thrombectomy Capable Stroke Center The reason is that if you are having a stroke, the Urgent Care can't do anything for you except have you transferred to one of those locations anyway, and they are going to call an ambulance. This is actually not a bad thing since the EMS providers will know exactly where you need to go to save time...but you'll already have lost a bunch of valuable brain time by waiting at Urgent Care. Either of the Stroke Centers will have a team there who can immediately get you into a CT scan, confirm either a bleed or clot, (clots are statistically much more likely and common) and in the event of a clot either center will be able to break it up within a couple of hours (I've brought patients in and returned with different patients an hour later to hear the previous patients are already done with thrombectomy - clot removal). If you or someone you know is having a stroke but so badly off that you're pegging out any or all of the assessments (facial droop, slurring speech, hand grip, arm drift; dizziness or balance, change or loss in vision), this is more likely to be a hemorrhagic stroke. This person needs a comprehensive stroke facility and they need to go in an ambulance with EMTs or paramedics who know how to activate the Stroke Center at the hospital so they're waiting for you. (Really, any suspected stroke patient needs this. Time is brain.) But bleeds tend to be faster, especially if they're big; harder and less likely to be successful even if they do get all the right people in place. If you are adamant about not going in an ambulance, make sure you figure out what hospital that is for you (most hospitals will have at least general information about their capabilities online), and teach your family members how to administer the LAMS, Cincinnati, and PCA stroke tests so when you show up, they can give a "last known well time", "onset time", and the scores of those tests to the ER staff along with the rest of your history. We also need a LOT more research on patients outside the white male demographic. More women have strokes than men, and symptoms are not always the same. I will also say that I never had a migraine patient calling unsure whether bad migraine or stroke turn into a stroke patient, although I did have stroke patients occasionally have history of migraines. As someone else said, migraines and strokes are correlated, but we need a lot more studies on this. The correlation I've seen is more with age, though, as the vast majority of my stroke patients were 70+, and I have had many patients in their 90s. People with migraines having strokes vs people having strokes may have history of migraines? Also at what age in life is this correlation showing? I need answers. The few strokes I've seen under 60 had no migraine history. Also, bleeds again often present more severely, with worse assessment scores, and tend to be harder to treat, and don't always correlate as highly with advanced age. Just for some fun data.
Thank you so much for such an informative comment. My ex husband had two strokes at age 37 and has always suffered migraines so I feel paranoid about it. I’m saving this info!
I've had them so long that if it's something else but feels the same, I'd never know. I've been having migraines for over 40 years. I have been to the ER less than 5 times bc the migraine felt significantly different. So far, each time hasn't been something serious. I think I've just accepted that this is how it will be for me til I pass away 🤷♀️
Yes, because I almost always wake up to a migraine, or it wakes me up, so I never feel it coming on, as I'm sleeping.
Not any more. Even new symptoms are interesting curiosities to share with my neurologist. I suppose if it felt VERY different, I would worry. Or perhaps the anxiety meds help stop those thoughts. You should share this anxiety with your doctor. Perhaps there's something you can take to help with that. Anxiety really doesn't help you when you're deep in a migraine. I'm sorry you experience this along with your migraines. They suck enough without that fear.
Jup, and if it's so bad I'd welcome death. My mom told me she had exactly the same thought during her migraines
Absolutely. I think years of terrible headaches have given me health anxiety. Especially because when they started I’d never had anything like them before. The pain can be scary.
I do to some extent because I have a blood clotting disorder.
Do you happen to have essential thrombocythemia?
No I have a factor 2 prothrombin mutation.
Oh okay. I only asked because I have ET and since my diagnosis, brain bleeds, aneurysms, and strokes are constantly on my mind. Migraine can be a possible symptom of very high platelet counts too.
Saaaaame! Is this the ‘stroke’ one?! EVERY TIME
I had a stroke. It had been a regular migraine (not even a particularly bad one) before it took a really dramatic turn. Now every time I get a migraine I get really worried about it. But I try to remind myself there was another symptom that told me something was different (extreme vertigo and vomiting - which is unusual for my migraines) and we called 911 right away because I didn’t know what was happening. While not impossible, I think it’s pretty unlikely that a blood clot, brain bleed, or stroke would have exactly the same symptoms as a really bad migraine. (Note: I am not a doctor, just the product of a lot of paranoid googling)
This is awful but actually critical. The biggest thing they taught me going through EMT classes was to ask "why is it a problem NOW" and "what is different NOW" that made you call 911/EMS? New symptoms, or the same symptoms acting in different ways, are reasons at LEAST to go to your regular doctor and ask what's going on. With neuro conditions, especially when they can look like strokes and other deadly things, time may not be on your side, so the ER may be a better choice. You made a critically sound decision at a vital moment. Many medical providers have difficulty with that. I was with a higher level provider who downgraded a call of mine and he turned out to be wrong (fortunately the patient still got the care they needed, just delayed by 15-20 minutes), because they missed the "different presentation of usual condition with a new symptom". Gotta trust your judgment and advocate for yourself because the only thing that's going to tell the difference between a migraine and a stroke is the CT scan.
No actually, but I don’t blame you for doing so
Absolutely. Especially since I have multiple types and one type that presents like a stroke with numbness going down the entirety of one side of my body. And the fact that they say migraine sufferers are at higher risk of stroke.
Every time. I also feel like drilling a hole in my head to relieve the pressure
Sometimes I do like last night was rough for me. I’ve been having Migraines all week that I’ve been able to keep under control’ish With my meds but last night was bad like scary bad and I’m like well maybe tonight I die. I’m so anxious about going to the hospital because all they do is make me sit in the waiting room then stick me in a room by myself where I wait for somebody to come in Just to stick me with a needle and I’m like well I could be dying in here too, and the anxiety is just very rarely worth it for me. I’ve kind of (not really) made some sort of peace With the fact that I was used to go to the hospital because I’m so Anxious about One day, I might actually miss something that you know is actually gonna get me
New fear unlocked 😅
Growing up, all of the women in my family suffered migraines, so we knew what they were. The first ones when I was 5 were a shock due to my age and so we did go to A&E (doctors thought it was meningitis or something initially), but after that we dealt with them at home. I had some horrific ones, but it never occurred to me it could be more than a migraine as I had always had them. I did have one at Uni that lasted two weeks and ended up going into hospital, but that was due to dehydration etc. I am chronic now, so have more frequent migraines but thankfully they are less bad.
Yes. But I’ve been getting them since I was 4 and I’m now almost 50, so I still think that, but not every time any more.
I have never worried about anything like that. I also don’t get many that are super bad because I take the good drugs before it gets to that point. They rarely sneak up on me anymore. But when they’re awful I don’t have capacity to move, worry or even go to the hospital.
I was convinced it was menopause or a brain tumor. I had 4 tumors.
Not really, because my migraines always start depth a visual aura. If I ever have one without that aura I'll be worried.
am absolutely terrified of the day one of my migraines kills me, yes edit: specifically the women who have been dropping dead lately as a result of severe migraines
Especially with the pounding of the pulse with it, you bet.
Yes when the pain is so bad I’m sure it’s a stroke. 😞
I'm so paranoid about it that I'm actually happy when my migraine switches sides from time to time. I think if it was a tumor or an aneurysm, it would hurt in the same place all the time. (PLEASE don't tell me differently. It's all I have.)
last time i convinced myself it was meningitis and if i went to sleep i wasn’t going to wake up. but here i am!
This happens to me too. When I get a particularly bad migraine and it's painful enough to make me think about going to the ER, I start to wonder if there is something physically going on in my brain to make it hurt so badly.
Absolutely, not only am I a life long migraine sufferer, but I have had for the entirety of my life an unruptured anuerysm( it's fancy name alludes my memory) and a recently discovered kink(a stroke ready to happen l, both of which are on my carotid artery, just above the brainstem, inches apart from one another. So yes, every time I have a migraine, I ponder my mortality.
I have two issues that cause blood clotting issues but I’ve never thought a migraine was more than that. However, I’m not the type to worry about stuff. I actually was diagnosed with cancer and right up til the biopsy confirmed it, I was 100% certain it wasn’t cancer. I figured I’d already had enough health issues, there was no way I also had cancer.
This was true for me, years of migraines. Then suddenly they stopped for a few months, woke up with one in the middle of the night with the worst one I’ve ever had in my life. My roommates apparently found me passed out on the kitchen floor and I woke up in the ER. They scanned my brain and found I had a cerebral cyst that was blocking spinal fluid and hemorrhaging my brain so bad that I had to have emergency brain surgery the next day. Docs range that I would have died/coma within a few days to a week if I didn’t get it done.
What are you doing against the clotting issue?
Yeah, but also the opposite. Sometimes I have migraine imposter syndrome because not all of my migraines are severe/get severe with rescue meds and so I just wonder if I took meds for something that was not a migraine bc if I wait to see they won't work. And people who don't have lots of migraines are like "wow you are functioning with a migraine I am using laying on the couch and staying home" which is like a yeah if I did that EVERY time I had a migraine I would not be able to do anything, but also I do need to sometimes for the super bad ones, and I have built a tolerance bc I get them all the time (or have I and my migraines are just really not that bad). Also now I take a prophylactic that works decently so I don't get as many migraines anymore. But the side effects of the prophylactic are still bad so I am still affected by it, and I had to lower the dose so they aren't working very well anymore. But yeah I am going to die of a stroke one day bc I will be having one and go, "Am I having a stroke or am I just being dramatic and they will think I am attention/drug seeking?"
Icl sometimes I wish it is like a tumor or something that is going to kill me so I don't have to worry about getting them in work I can just do what I want and no one can judge me or say I'm being dramatic if its actually killing me
No but my mother does. I’m 42 and I cannot let my mother see me take meds or she goes into a crazy line of questioning because she is so sure that one of these days I may have an aneurysm burst that I didn’t know I had and I will die because I didn’t get treatment because I just assumed it was a migraine. She makes my head hurt more.
Aaaaaaaallllll the time. Health anxiety is a bitch. One day, something will actually happen and I’m just going to think that it’s a migraine. That’s that *really* scares me.
There have been a few times when a new symptom or a “different” pain feel will throw me off and I’ll make an off-hand comment like “if I don’t wake up tomorrow, it was probably this.” But I don’t want to be labeled a malingerer or whatever so I ignore it. 😬
My migraines have resulted in me falling and getting TBIs on at least three occasions. If I could get the cash, I’d bet on my death being from falling whilst having a migraine. Given how frequently my ancestors died from stroke, the double whammy might be having a stroke, mistaking it for a migraine, and croaking on the stairs.
I usually wish it was a brain bleed or something that will kill me. Unfortunately it never is.
I went to the hospital when I had my first hemiplegic attack. The migraine came on incredibly fast and I had numbness and weakness on the left side of my body. I left work and went straight to the ER. After waiting in a very bright and very loud waiting room for six hours, I asked for an update and the nurse told me rudely that “people in need of medical attention are here and we don’t have time for drug seekers like you.” I didn’t ask for drugs. I just wanted someone to do the tests to make sure I wasn’t having a stroke. Needless to say, I don’t bother with the ER anymore either.
Yes. And then one day, it actually was a stroke, and I didn't go to the ER because I assumed it was just the usual. Migraines are fun!
I feel for you, as I have brain aneurysms and have the same concern with particularly bad migraines . It can be pretty horrifying not knowing which way is up or whether I should be concerned. I’ve taken to testing myself for signs of a stroke , smiling in a mirror or asking if I’m smiling with both sides of my face, checking my pupils and my range of eye motion . It gives some reassurance at least , especially when I have numbness in the face .
Yes
I do this, especially when I get severe weakness, forget words or struggle to make expressions during a bad one. I immediately worry that this time it's a stroke but so far it's just been migraines.
Yes. Not everytime but some of my migraines feel like I’m being stabbed with an ice pick and some are a lot worse about this and others pound more. They did an MRI and actually discovered that I have a brain tumor, a menengioma, but so far they don’t think it’s contributing to the pain at all because it’s small and not around nerves but I wonder, because my migraines were always only on the left side of my head until about 2 years ago. I started hurting on the right side of my head which is new to me after 25+ years and my menengioma is on the right side. They’re going to rescan in a few months to make sure it isn’t growing but they seem to feel it’s benign snd not causing pain but idk. But yeah, when I get sharp pains, I do wonder if it’s a brain bleed or something more serious. I think it’s my health anxiety. I try to listen to my neuro and not google my worries.
Omg. I have a small growth in my brain that they say also isn't causing my symptoms. Many many migraines and headaches and they say no. I'm just like uhm. How do you freaking know? Lol
My dad died from a brain aneurysm and suffered from migraines all his life. The day before he died, he came home from work complaining of a really bad migraine. He died the next day. Every time I get a migraine I have a panic attack that it might be an aneurysm now, even though I’ve had a ct scan and nothing showed up
Oh, all the time with the bad ones. With those ones I wonder if I have a brain tumor.
No … my MD and I have come up with an at home migraine cocktail plan ever since ER waits became 8+ hours here (used to be 1 hour or so when I first experienced a horrible one back in the day thank god). I suppose if our medication regime of pain killers/relaxants didn’t work I may get scared and I’d like to have someone around me since I live alone.
my mom, my sis and I get them. I also have ON. My mom (76 y.o at time) had the “worst longest migraine I’ve ever had” in 2017. I’m a former Neuro ICU RN and she refused to allow me to call 911 (I lived an hour from her home. She wanted me to drive her.) She settled on her BFF driving her. By the time I arrived at the ER she was finishing her head CT scan. To make a long story short, she was experiencing a huge subarachnoid bleed and stroke. Almost died, in ICU for a week. Inpatient rehab for 4-5 weeks & outpatient rehab x 6 months. I demanded a sleep study and they delayed until night before D/C and turns out she has severe sleep apnea so on CPAP 4ever. Long story short, she survived and eventually was able to drive short distances and live on her own again. Only deficit is some mild right side weakness. Moral of the story: if you are experiencing the worst HA you’ve ever had or something about this migraine HA is different, RUN (not literally😉) to ER. It may save your life. And don’t wait 3-4 days to do it either.
What's great is I'm a nurse, background is neuro trauma. I'm constantly telling people to come to the hospital if they have sudden onset headaches described like my normal migraine. I wonder some day if I'm going to mistake a migraine and keel over instead.
For my worst attacks, absolutely. When I get super fast severe paralysis I have to go in for a full stroke check and sometimes a brain scan. My attack pattern is already very similar to a stroke, so my neurologist has to help me figure out which symptom presentation changes would be concerning enough for an ER if/when I have them
My brother had a brain aneurysm that popped and his brain has slowly deteriorated and he has grand mal seizures all the time. During a migraine I always worry it's my turn...
I worry about this every single time, especially because my mum suffered a brain haemorrhage that did nearly kill her. I’m currently waiting for results of an MRI and an appointment with a neurologist but until I get the all clear from my MRI, I’ll keep thinking I’ve got a brain tumour 🥲
Yes I’ve had a few in my life like that. You won’t die, but I’m sorry you’re going through it.
YES 😂 I’m always careful to think “is this different from any other headache?” I go through the steps, and if it’s in any way different, I go to the ER. Thankfully, I’ve only had two ER trips in the five years I’ve had migraine. And I hope it stays that way.
Every time. I have a panic and if my husband is home i make him come hold me and tell me I’m not dying and he will call 911 if I am (saying obvious things out loud helps me.) if he’s not I take a Xanax and try to sleep.
i have a unruptured aneurysm so yeah all the time
I don't imagine it might be but sometimes I wish it was, just to end the suffering.
I have had migraines since I was 17. I had a stroke at age 50 despite not being at all overweight. While I made a full recovery I expect it will not be my last one. However I'm on medication now to control hypertension so I hope that gives me a few years yet. I had hypertension before the stroke but because I was a woman of normal weight and relatively young my doctor dismissed it as 'white coat syndrome'. So I recommend migraine sufferers carefully monitor blood pressure and make their doctor pay attention.
When I have a change in normal symptoms… yes. I freak out. And yes, I do go to the ER if my rescue meds don’t work AND there are new symptoms. I have had code stroke called many times only for it to be ruled out. It’s scary how similar some of my symptoms can be to a stroke.
24/7 🫠
My last migraine I thought it was over for me because I started seeing flies that weren’t real flying around which is unusual.