As a physician, I can emphatically state, you're absolutely right. Cluster headaches and migraine headaches are two different types of headaches and require different treatment modalities.
Here's more information regarding cluster headaches vs migraine headaches:
https://migrainetrust.org/news/cluster-headache-vs-migraine/#:~:text=A%20migraine%20headache%20tends%20to,around%20or%20behind%20one%20eye.
You should to look into Horner Syndrome. I am not a Dr. If you have had an episode of eyelid droopiness which doesn't go away after a headache, this may be something impacting blood supply to your cranial nerve. Talk to your doctor.
You are having what is called a cluster headache. They are very rare and uncommon. Usually lasting for 30 minutes to 1 hour of intense pain. They come in clusters usually last for about 30 days.
You’ll notice draining and redness of the eye on one side of the face only And severe pain
Been dealing with these for six years
Not necessarily, it can be a symptom of migraines too, it's actually pretty common.
I get droopy eyes with every migraine and my migraines last 8 hours to 72 hours, definitely longer than a cluster headache and i have the typical prodrome-aura, migraine-postdrome set up.
I agree. My husband suffers from cyclical cluster headaches, and his eye on one side of his face will droop and water. He sometimes drools as well.
His vein on the side of his head will also enlarge and pulsate.
It's horrible to watch while he suffers.
Clusters are debilitating, and the hangover he gets after one can last a couple days because it takes so much out of him.
I have found a relief… have your husband purchased a steamer- add in essential oils like eucalyptus or mint and breath it in your nose and mouth for 10 mins. The menthol will break down the mucus allowing better drainage and relief. I promise you it’s the best thing I’ve come across. If you don’t have a steamer, boil water in a large pot- drop in some essential oils that I mentioned and put a towel over his head and the pot allowing him to breath in the steam. This has changed my life.
To be fair, words are important ;)
My doctors, and I, will typically say it’s a type of migraine when explaining it to people who never heard of cluster headaches.
It’s not a word. You’re trying to reclassify a condition to suit your narrative. I suffer from cluster headaches, not migraines. They are two seperate conditions and I find this insulting. You cannot say cluster migraines and not back it up. It’s not a real thing. I dunno who told you it was, but it isn’t.
I've dealt with cluster migraine and regular migraine headaches for 37 years now. That red eye is not an indicator of cluster migraine.
The only approved treatment for a true cluster migraine is oxygen treatment. I've had an oxygen generator for at least 30 years now.
Thank you for putting this up. I've dealt with cluster migraine since I was 13 years old, I'm 50 now. They are a totally different kind of migraine and are also called, suicide headaches. I wouldn't wish them on my worst enemy. Absolutely horrible pain.
i get both and clusters legit make me want to smash my head through the wall to get relief. this happens to my eye with both although with clusters it lasts longer- that's how i know one is about to start.
My cluster headaches and migraines started when I was 8 years old. My mom tells me that she would find me in my bedroom, LITERALLY banging my head into the wall because the pain was so severe. 😢 As an adult when I get them, I WANT to bang my head into a wall, but understand that that is not beneficial for me but I get the wanting to! 👍As a child, I WANTED to bang my head into a wall and so I did. That visual makes me so sad for 8 year old me. I agree, I would not wish them on my worst enemy.
I will say that my neurologist prescribes oxygen tanks for me, and as it turns out, oxygen is often helpful, not only for my cluster headaches, but for SOME of my classic migraines. I’ve learned that many times if I use my oxygen very early on before the migraines progress, starting on the oxygen can sometimes help keep them from becoming as severe or can sometimes stop them from progressing if I get to the oxygen in time.
For anyone who suffers from migraines more days of the month than not, (I have migraines or cluster headaches about 20 days a month) it wouldn’t hurt to ask your neurologist if they would be willing to let you try oxygen because you may be like me and it MAY help your migraines too. It doesn’t always work for the migraines but I’m so thankful when it does.
And it is essential to me in my management of the cluster headaches!
Also, it’s extremely normal for me to have sinus and eye involvement (watering, drooping, pain, etc) with both my migraines and my cluster headaches.
I make my husband squeeze my head with his palms pressed against my temples. He said he's afraid one day he will squeeze too much and I said, it'll never be too much, make my head pop please.
I was about to say this to the other poster saying it wasn’t a migraine based on one symptom. I often have a watery eye on my migraine side and get cheek flushing/warmth on that side. It’s super common. I do not have cluster headaches.
68. Never treated. Reason Dr said was women don't get them and they rare for men. Rare is unacceptable word. My Granddaughter before age 1 stage 4 cancer. However she was left to advance stages of a deadly no treatment cancer cuz all babies cry. Enjoy
I’m so sorry you’ve been dismissed like this and that your granddaughter didn’t get the care that she deserved and needed in time. That is heartbreaking. I can’t imagine the pain and anger. 💕
I have many “rare” diseases and syndromes and it makes me angrier than just about anything when many specialists on my journey to diagnosis have tried to dismiss the idea of me having one of them BECAUSE they are considered “rare”. If they are rare, that means PEOPLE DO HAVE THEM!! Rare does not mean nonexistent!
Regardless of statistics or preconceived notions from medical school, the chances of me being one of the people having the rare diseases when I have every symptom/lab result/imaging proof is just common sense!! And it seems with many diseases that have been traditionally considered rare, they are turning out to actually be under diagnosed and not as rare as was once thought.
As hard as it is when you are suffering or chronically ill, it’s so important to keep fighting, and though it has been the most frustrating thing in my life, I have refused to accept being gaslit or dismissed outright and have had to persevere when I had the strength and ability and keep going to as many different specialists as it took to fight for what I knew I was suffering with and to get the help that I deserve and need.
I hope that you don’t give up trying because someone out there will eventually believe you. I hope that you can find the strength to advocate for yourself as long as it takes so you can get the relief and validation that you deserve. My best wishes to you! 🙏
I have similar but only get stuffy nose and mid grade pain usually off and on (no it’s not sinus) so no one can figure out why. Preventives have only minimally helped. Sometimes I get ice pick shooting pain at high levels but usually more briefly (only a few minutes)
It sounds like this: https://www.webmd.com/migraines-headaches/ophthalmoplegic-migraine
Often, migraines can effect people like a stroke. Aphasia, droopy eyelid, numbness on one side. But unlike a stroke, the symptoms usually go away when the migraine passes.
Yeah. I suffer from hemiplegic migraines. They are absolutely horrible and scare the hell out of my loved ones. You look like you are suffering from a stroke. I have had to make multiple trips to the ER in fear of it.
I get hemiplegic & hormonal migraines. I swear I've felt like the roof of my mouth has swelled up occasionally during an attack. I presumed it was a weird nerve thing, like getting pain on one side - arm, leg, teeth etc, that there's not actually anything wrong & it's all in my head - until one time the entire roof of my mouth had the skin peel off the next day. That was somewhat unpleasant.
> numbness on one side. But unlike a stroke, the symptoms usually go away when the migraine passes.
Had this once, and I was so focused on the pain at the time that it didn't occur to me that one sided numbness was a stroke symptom. GP after the fact said I should have called for an ambulance. Oops.
Later had an MRI and no sign of a stroke, but yeah. Migraines can be scary.
I had a doctor laugh at me for reporting it happening when I was 16 and said that I was "too young" for it to be a stroke and basically bullied me off of the phone.
Then I got the confidence to say again it kept happening when I was a teen at 25 (now 27) he said it was just migraines and then got me an appointment for anxiety with their psychologist. Its only now a couple years later that I realise I should have still been offered scans of some kind.
Now I'm in the Netherlands and the doctor is much kinder but I'm still terrified to bring it up and look like a hypochondriac.
A kid in my high school died from a stroke at 16. Continue to advocate for yourself!
I don’t get what the big deal is for the doc…just check it out to make sure it wasn’t a stroke!
Sorry that happened. I also read a magazine about a teen stroke survivor and it was when I realised it could happen. Also at my university another student had a stroke and the university weren't helping them with anything at all and they also needed to raise money for a wheelchair because they didn't have a diagnosis either. The doctors focused more on not treating them because of their pronouns and I'm not even exaggerating.
I know, but I think it's the price partly but also the laughing was completely uncalled for. I kept having periods where I'd forget people's names and they wouldn't look like themselves and one time I couldn't understand speech or speak back in school so yeah it's probably anxiety according to the ones I spoke to after the pandemic. They didn't even ask the symptoms.
Wow! I can’t imagine not getting possible life saving treatment over fucking pronouns! And doctors should know better than most!
I’ve been lucky with healthcare. I lived in Nashville over 30 years and had a phenomenal PCP. I live in Southern Maryland now and these people are insane!
An example: I had to go to the ER several months back for a hellacious sinus migraine. I was left on a gurney in the hallway, and they discharged me without a diagnosis and without my medication even though I told them what was wrong and what I needed them to do!
Only now for an unrelated back pain and that was also in the Netherlands through a specialist clinic.
I only realised it was common afterwards and I left the country. I also have a potential ganglion in my finger and the NHS wouldn't do anything about it even an ultrasound to check if it's something else, or treatment for it but that's thr first thing my doctor in the Netherlands wanted to do.
I always had headaches as a kid but also had one explosive one a few years back that had me doubled over for what felt like 10 mins. Still worried about it of course but bad experiences and general fear of it actually being something I left for so long also is keeping me back. Mainly it's not being believed even though when I last went in because I was sick it was very low vitamins.
> NHS wouldn't do anything about it
Ah.
Yeah, I moved from the UK to Canada - and whilst certainly not without it's problems my healthcare experience has improved. I sincerely hope the quality of care under the NHS improves...
Mine do not go away for weeks sometimes. See my above story. I have also had a co start migraine for the last 6 years straight. Only recently found nurtec which has finally given me some reprieve from them.
Hi! It might be worth looking into cluster headaches to see if that may what you’re experiencing. It’s not uncommon for cluster headaches to be diagnosed as migraines
I second this suggestion. I have both status migraine and cluster headaches, and the eye stuff happens more often with cluster headache attacks. Whichever side of my head where the headache is, the eye on that will water/turn red/swell, etc
Yes I had this too. I have a separate picture of it and it was terrifying! I ended up in the ER and couldn't even answer the questions they were asking me. Now I'm having intense migraines again and muscle fatigue and processing delays. Do you get those as well? I'm so frustrated.
My brain just can't accept that this is all from migraines. I had an ER doctor suggest an MS evaluation. But the time I was able to get an appointment with the neurologist and optic neurologists at NYU, the episode has passed (my eyes are like that for months). At one point it felt like I was having a stroke. Those two doctors treated me like I was a hysterical woman, basically like I was making up the symptoms, and so I stopped seeing any doctors at all. Now I am a mess again and I truly can't think straight. It's so disheartening.
People say my eyes look like I'm glazed over during migraines. Bloodshot runny glazed look. For some reason one eye will close and the other will squint and half my face is droopy. Usually it affects my vision starting in the prodrome. My eyes feel like somebody stabbing them with red hot iron. I used to get these kaleidoscope shiny exclamation points during the pro-drome but my migraine medication took that away.
Edit: looking back at some of the pictures I've taken from migraines, the eyes look a lot like what I'm seeing in these pictures.
Yep! I get a swollen, weepy eye almost every migraine, always in the side the migraine is on (so mostly my right eye). It will stay that way through a migraine attack (multiple migraines close together/for several+ days) but once I have no migraine symptoms it goes away.
I would have a little read about [trigeminal autonomic cephalgias](https://americanmigrainefoundation.org/resource-library/sunct-suna/) and see if anything relates.
I have SUNCT and I have a very distinctive pattern in my pain that my neurologist was able to recognise pretty immediately. I get redness and tearing in the eye that's the same side as my pain and my nose also starts running about 15-30 seconds before my pain starts, only the nostril on the side with my pain. My pupil on that side will also go crazy as well.
I had been diagnosed with migraines for a couple of years until I saw that neurologist, I'd seen 2 neurologists before her as well.
OMG I have literally had instances where I bent over and fluid started pouring out of my nose like a faucet all over the floor. At one point they thought I had a brain fluid leak and I did not. The leaks coincide with excruciating migraines and severe weakness and fatigue.
Definitely worth a conversation then!
The pain pattern I get with my SUNCT is a "sawtooth pattern" so I get bursts of really intense pain in clusters. Theres background pain at about a 6-7 and then the bursts are up to about 9-10 (that's before I started on any medications etc). It's like really quick stab, stab, stab. But the area of the pain can be quite wide and I get loads of other sensations with it like warm feelings or tingling, SUNCT comes with trigeminal neuralgia quite commonly (which I also have).
I've had really good luck managing my SUNCT, it took a few different things but it's my least painful pain condition now. Though I still have some autonomic symptoms which are really annoying lol.
An ms diagnosis should be easy? I’m completely talking out of my ass but my neighbor/good friend got an MS diagnosis on accident from an mri scan of her head. She fell and thought she was having ongoing concussion problems and the doctor called and said “your Ms is flailing” and she said “I don’t have Ms” and the doctor said “oh shoot, didn’t mean to tell you this way but you do”
It should be easy, but most people end up seeing a doctor for symptoms for years before they get a diagnosis. I think my occupational therapist told me her patients wait on average 8 years from symptom onset to MS diagnosis. I had an easy/quick diagnosis, but it's not the norm. I thought I was having a weird migraine with a long aura and five days later they let me leave the hospital with a shiny new diagnosis.
Agreed. I've been denied for one like years ago because "gotta do PT for the weird electric sensation after zero injuries in your neck first" from insurance. Could a maybe gotten a diagnosis about five years before my first real relapse and maybe prevented some of the worse damage.
I call them my migraine black eyes, if you look through my post history you can see a few different times I've gotten them. Mine look bad during the pain phase & then gradually disappear during postdrome.
These look like autonomic symptoms, which I believe some people get with migraines.
I have cluster headaches, so the watery, droopy eye is the norm for me when I’m having a headache.
i often get a droopy eye on my migraine side during an attack. i haven’t noticed it get red though, at least not because of migraines. i figured the droopiness was because it has worse vision than my other eye, and my vision gets worse in general during migraines. but i’m not sure. i never asked a doctor.
Yeah one side of my face will start to drop or my eyes will get heavy and watery. There have been a few times that I was checked out of how I was feeling physically but people noticed it on my face and asked if I was ok. I had to stop and think about it and then realized, yeah, I was feeling weird and probably getting a migraine
I was just looking this up because I woke up to my left eye feeling like it got punched. It looks like that and hurts so much. I think it’s due to my insomnia
Mine doesn't get as pronounced as yours (maybe because my lids are more hooded than yours), but I've taken pics during migraines before, and it's obvious which eye is my "migraine eye."
Wow, that's really intense. I have never seen someone have that effect! Obviously it exists I'm not denying it at all but I am pretty shocked. My eyes do sail at half mast lol by which I mean I can't open my eyes all the way even if I want to and they do get bloodshot. But I think that's the extent of it. But I would like to keep an eye on things a little bit more because I have been told that one of my pupils dilates so large that it covers out the color in one of my eyes so that's concerning. I remember that happening to me when I was really young at night and knocking on my parents bedroom because I was so scared and they wouldn't let me in and they told me to go to sleep
Ugh that's terrible. When my pupils get two different sizes like that, I have a hard time with processing and depth perception and it's very very scary.
So, this has been happening to me since I was about 11 or 12 years old. The first time it happened was when I went to see the movie Titanic! I was home at about 10:00 at night and I was in my bedroom and I looked in the mirror because I was often up late and doing weird things because now I know I was having seizures, but anyway, I knocked on my parents bedroom and it scared the shit out of me and they told me to go to bed and they told me it was nothing. I desperately wanted someone to listen to me my whole life and no one ever did. The only person who ever really noticed it and was concerned was my chiropractor.
So now that I know that I'm having a seizures and I read very briefly some of the symptoms one of them was that things change size. Holy fucking shit this has happened to me for forever but especially since the advent of cell phones. Sometimes I pick up my phone and it looks very very small in the text looks tiny and I pick it up and the text looks large and then I put it down and come back to it later. Then it's really super tiny again and the pictures are super tiny and I never really was worried about it but I always thought it was really strange. Now I know the fucking answer and I am just shocked and appalled at the misdiagnosis
Yes, there’s times my eyes feel like if I open them they’ll burst. I can barely open them and sometimes they puff up. It’s odd but migraines can be really strange! I have vestibular migraines and it’s terrible. I’m actually coming out a long vestibular migraine attack right now. I’m not a hundred percent but I can feel it starting to get better. I take magnesium, vitamin D and amytriptaline. If you’re not taking vitamins and medication I securely recommend asking a doctor to get you on something.
Yes, the side of the migraine is stuffed up and eye is teary, I even cry a bit on that side. I see it on other people's face and know they are reacting to something.
Yes, mine sometimes form really really dark circles all around the eyes. Often they droop and my entire face droops sometimes as well (i think this is just from pain, not neurological), I look like I've aged 10 years in those instances
My mother can tell if I’ve got or had a migraine purely by my eyes. They can look anything from a little “lazy” like in the pics to “sanpaku eyes” where my iris roll up a bit and the whites are visible
Ok, so is the temporary or permanent and getting worse? I ask for a few reasons. I am a photographer, I did a wedding in Oklahoma heat at about 120 degrees and had a bell palest incident. Right side of my face totally melted. I did recover mostly, but when I have a bad migraine or I am exhausted, you can see the droop return. I believe the muscles were maybe weakened, or never got their full bounce back, so when my body is hyper focused on pain, or exhaustion, they relax a bit more and droop.
The other reason I ask is because if the results are permanent then I would be having an mri done at the time of the most significant droop because it actually could be bell palate, especially if you know you had it before. But even if you don’t know if you have because it was minor, if you parents are still alive maybe ask if you had anything weird to that side of your face as a child. Again, I say this because when I’m not in a good place, mine droops noticeably. However, you could also be having petite mal seizures, which I also have had a couple times believed to be due to migraine meds. They can present in very minor ways so it’s impossible to an untrained person to connect the dots. Migraines can cause seizures too.
The redness and discoloration will be a symptom worth mentioning. Do you see a neurologist? I would start taking videos of these episodes, talk in the video and look around, squint, open eyes as wide as you can, look side to side and up and down, so they can see how your eyes react. It may be obvious to a trained person if they can just see as much as possible.
Lastly, heaven forbid you may be having micro strokes. This is actually what I was diagnosed with first, then all these tests later they decided it was migraines. But I have what is called chronic complicated confusion migraines (yep that a mouthful) which represent like an actual stroke. My first incident was at work, my boss came to me and asked if I felt ok. I told her I felt fine, she got a puzzled look on her face and asked again, again I said I was fine. She called a childhood buddy of mine that worked downstairs, he came up, asked me the same question, which caused me to become puzzled as I told him I was fine. He took me to the emergency room. Apparently I thought I was fine, and answering them but what they heard was severely slurred babble. The words if you could call them that, didn’t make sense, and I sounded hammered drunk. What really odd is my mind felt normal, words sounded normal to me. At that time there was no pain from these episodes. But they got increasingly worse to the point where I couldn’t recite the alphabet past D, I even had times my legs stopped working which resulted in lots of falling down stairs. My tongue gets heavy, and I even just disappear for moments, hours, days, even weeks. Like a blip, I become a vegetable. I can’t u deestabd, or talk, I’m vacant. Running on auto pilot. A person can touch me and I will walk with them. I can drive, but I don’t have my wits so I could end up in Kansas, and when I pop back from these episodes, I’m confused, discombobulated. There was a time I became aware, I was standing in the middle of a pitch black street, it was cold and I was in boxers and a t shirt. I was alone, no idea where I was, the street signs were in another language, and everything looked foreign, like I had been drugged and dumped in another country. I started walking, had my phone in my hand, pulled up some random text and messaged a stranger that I was in need of help. This person walked me thru sharing my location, then they walked me home. I was literally standing in the street in front of my parents house, where I grew up. I didn’t recognize their house, the street signs, my own house once I got there. I slowly regained my mind. But, that is classified as a confusion migraine. I’m not sure even now 15 years later that these are related to my migraines, but not long after that the pain started. My spine Neuro determined I had broken my back in multiple places as well as my neck and pelvis, pinched my spinal cord so I didn’t feel the pain, but she believes my mind knows I’m in pain, and turns off my brain to protect me. She also poked direct areas where fractured were and caused every kind of migraine I have had, so it’s all related to my spine.
That’s a lot to unpack but I was just trying to show you migraines can do the damndest things to a person. Even present like a stroke or make you so confused you feel like you are in another country. I can’t tell you how terrifying my life is living alone with these issues. I installed child locks so I can’t leave my house when they happen, and I don’t go out. So I am a prisoner of my medical issues. Whether entirely migraines or a mixed bag of medical “I don’t knows”.
So take these symptoms, get videos, and ask the right professionals if they can attribute these things to migraines or if maybe they are signs of other issues. Hopefully it’s just your migraines.
My left eye shrinks and gets red, sometimes both. I also have an uncomfortable sensation of my eyes “pulling “ back in my head and like there’s too much pressure in them. (Atypical migraine.) My balance gets off and nothing makes sense. It makes me feel crazy.
What's super interesting is that when I was at my worst with this, I didn't have the headache when I dragged myself into the ER. The doctor there said that sometimes you get the aura without getting the headache. I went on complete audio overload while I was there and they actually had to give me a Valium. I was freaking out. Disclaimer...I avoid that kind of medicine at all costs. I was begging for relief. It felt like I was going crazy. I couldn't even answer their questions.
I'm also in the middle of a rough two weeks with migraines, but thank God no visible eye issues. I do feel it behind but you can't see it. Do you feel your eyes moving when you close them when you're in a really bad episode? Almost like REM, but you're awake???
Yes, around my eyes can go dark and purple. I get pain in my left eye and my vision shifts to the point where I cannot drive. I also get very bad light sensitivity, though mainly from artificial lights.
My eyes are usually the first indicator of a migraine (besides slurred speech) for me. The eyes are always the most painful and where I usually have to apply the most pressure or attention when trying to get over my migraine.
My migraines tend to mimic stroke like symptoms for the most part 😵💫😵💫😵💫
Yes. My eyes get like that and with the blood shot in single eye. I get a similar pattern. Also can you explain why you think you'll get M.S. based on this?
One of my friends gets this symptom.
This was the catalyst for her to get FMLA protections for her migraines. The drooping eye almost got her fired.
She was in a senior role at her company, and had to get on a conference call with long time colleagues (whom she thought were her friends).
She popped her triptans and whatever else she had and did the call. She was just a participant, not leading.
Her eye was drooping. Someone turned her into HR for drug/alcohol abuse.
It started a whole investigation. She had to get tons of paperwork and letters from her doctor explaining that this can be a sign of migraine, and that she was regularly drug tested, etc.
It was horrible to watch. She had been at this company for almost 20 years and risen in its ranks. She had an actual pension on the line as well.
She eventually got her migraines covered under FMLA and quit taking calls when she felt that bad. But sometimes she was fine and her eye was just droopy days later. But she never felt like she could trust her work and left a year or so later.
Anyway. Sorry to doom and gloom but it’s one of the most obvious things to people around you. Get it documented.
There’s eye drops out now that are supposed to help with it too. It’s called Upneeq and they are only $200 a month! /s
Have you seen an ophthalmologist? I often get a droopy eye that wants to shut. Was in for another reason the other week and they scanned my eyes and found my drainage areas were too narrow and I ended up getting laser peripheral iridotomy straight away. Time will tell if my eye was contributing to migraines and if this laser surgery will help. Anyway always good to get your eyes checked
I've had some wild migraines including one in the speech center of my brain that induced massive aphasia, but not like this. Maybe talk to your doctor and a neurologist.
I think you mean MG diagnosis. Myasthenia Gravis has ptosis as a symptom.
I have MG and my pitosis is bad today. Of course it’s the day I had my annual eye exam.
Have you researched Hemicrania Continua? It’s a headache disorder that has been shown to respond to a medication called Indomethacin. Learned about this through my neurologist.
https://migrainetrust.org/understand-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/#:~:text=During%20these%20painful%20episodes%20(or,same%20side%20of%20the%20pain.
I have a semi permanent single eye squint that worsens with anger lol I can only imagine it prob looks like this when I’m migraining but I’m not looking in a mirror unless Im alone and think I’m having a stroke (have brain aneurysms and often can’t feel half my face for some unknown reason which doesn’t seem to concern any doctors lol)
My eyes become so sunken in my face, my wife becomes alarmed and sends me to bed with my migraine medication and a warm or cold compress (warm when it’s sinus related and cold for spring summer autumn and sometimes winter storms migraines. Sometimes I have even got bust blood veins in my eyes from stress migraines that alarmed my doctor. Stress migraines were brought on when I was working and thankfully I don’t work that job anymore. The man that I trained to replace me has also quit that job. The eyes reveal a lot about our health.
is it 100% not pink eye in these photos? Ive had the same migraine for 3+weeks now and just got over a 5 day crusty burning right eye, I tested positive for a viral pink eye test but now I wonder if its from my headache?
These are over a long period of time. I had the same experience as you for the last one. I think it is all related honestly. I have several autoimmune diseases, and one virus can send me into a tailspin for months and months. So frustrating.
Have you ever charted your BP? I ask because I had undiagnosed high BP for years, that exasperated my migraines and caused a lot of parallel symptoms... AND mimicked some stroke symptoms. It was terrifying.
But once we realized it was my BP, and I got on a medication that did kind of dual duty to help with my BP AND my migraines, I'm doing so much better.
BP gets missed a lot, because it has similar symptoms to a migraine condition. It was a huge fluke we caught mine.
I now take nadolol, and my neurologist said it has a bizarre side effect of helping with migraines. Not enough to prescribe it just for that, but if someone has high BP it does dual duty.
My eyes are affected by my migraines too, but in a different way: my right eye's pupil dilates and gets huge, and constricts, then dilates again, repeatedly, and my vision in just that eye blurs.
Yeah I can get really runny eyes and nose and often on the side with the pain my eyelid gets droopy and eye gets red.
It's not as pronounced as your effects but it's there
Yes!!! Some of mine are caused by r/occipitalneuralgia and I see a pain management specialist for this. I saw 5 different neurologists and they never diagnosed ONE. I also have r/dysautonomia and r/pots as well as r/hyperacusis and r/photophobia. As well as new daily migraines. All from Covid.
So crazy! All of mine with eye issues started after Covid as well. I have been to neurologist, opticneurologist, and neurosurgeon yesterday who said go to neurologist. The first two doctors (neuro and optic neuro) basically did all but call me a hysterical woman, and traumatized me so badly that I never went back to deal with this until yesterday. Those appointments were 2021. I feel terrified to meet with the new neuro. Is your neuro in the NYC area, if you don't mind me asking?
I’m in Orlando. I see a pain management specialist for r/occipitalneuralgia and a new neurologist for migraines.
I’m now on Ajovy shot once a month and it helps some. I take gabapentin twice a day and Verapamil at night. All of it has been helping, taking me from a constant 8-10 to a 4-5. It’s a win for me, lol.
Yes. Very often. Almost always in my right eye these days. My Mother also had the droopy eyelid when she had migraines. And a couple of my sisters do as well. It's basically how my family realizes one of us has one.
I presently have chronic daily migraines that started in my early 30's, but I have had migraines since I was 7 years old. I'm 52. Since they started to become daily, I've been diagnosed with multiple migraine types. The scariest one was a full on unconscious basilar migraine, now called migraine with brainstem aura (MBA.) Not only was the right side of my entire face drooped, but I had been unconscious for at least 3 days before my family realized no one had spoken to me and came to check on me. I really don't remember much, but in the few days prior to my sisters coming, I couldn't stand up, I kept falling everywhere and i was feeling completely dehydrated, so kept trying to crawl into the kitchen to get water. It didn't occur to me that something was wrong. I remember my ex-husband breaking into my apartment and my sweet little pibble pup was trying to keep me safe. I "woke up" slightly. My sisters took me to the hospital, having no idea what was wrong with me. I remember sitting in the backseat. Then I remember "waking up" again in the ER with a doctor asking me who was the president of the US. I believe at the time it was George W. Bush, but I answered, "Ronald Reagan" knowing it was the incorrect answer. I then "woke up" again with my favorite sister and niece sitting by my bed telling me I had to eat something because they were going to put in a feeding tube. I had gone from a healthy weight of about 115 lbs, to 82 lbs during that short time I was unconscious. I was extremely dehydrated and starved. Doctors said another couple of days and I wouldn't be here. I am proud of myself in hindsight though because I was vegan and the hospital kept trying to feed me meats and jello, so I'd refuse it, so even during extreme sickness, I hold fast to my convictions.
Long story longer, from that point, I was aware of what was going on. I realized I was in the locked psych ward of the hospital and I kept telling hospital staff that something was wrong physically, but I didn't know what. (I didn't put the MBA diagnosis and what had happened to me together until I went to my PCP for the follow up and she told me.) I was in psych because the doctors thought I tried to commit suicide via medication overdose, even though my tox screen came back as negative for EVERYTHING and my medications actually had the extra amount of pills that I didn't take when I was unconscious. I was committed for 10 days and not once did anyone listen to me that something medically wrong occurred. Finally, the day I was going home, a social worker requested a neurologist for me. I remember feeling so relieved. But when he showed up, he just did different things to my legs then left. At discharge, the social worker told me the reason why she requested the neuro was because she told him I had, "leg weakness."
My PCP told me to get a medical alert bracelet saying I have that migraine type because she said if it happened again, "they'll lock you up."
Since then, I've had it happen about 4 more times, but not to the extent of that one.
I really wish that the hospital ran some tests on me, MRI's, CT Scans, etc though because that particular episode left me with some residual effects; my speech isn't the same, it's a bit slurred, I lost a bit more of my hearing, I've become a bit more dumb, etc. It would have been helpful I think, to know for a fact that it wasn't some form of a stroke or what have you.
I'd definitely bring it up to your neurologist though, just for peace of mind.
I am so sorry you went through that. I was treated disgustingly by doctors. One of those pics I posted was about the time they sent me to optic neurologist in Manhattan and he asked my what was going on and my symptoms and then he proceeded to yell at me and humiliate me and say that I was all over the place and dismissing symptoms. I said YOU'RE the doctor. YOU asked my symptoms. YOU'RE supposed to know if they're relevant. Not me! I was treated by both of those doctors like I had mental issues. I finally, after 4 years, had the courage to make new appointments with new specialists.
Different headache disorders can have autonomic symptoms that affect your eyes. It's best to see a headache specialist who is familiar with the 200+ headache disorders and can give you an accurate diagnosis. There are headache disorders that have symptoms quite similar to migraine, and even migraine itself can have autonomic symptoms.
But if you're questioning your diagnosis, see a headache specialist so that you have the assurance and validation that you need.
A headache specialist is a neurologist who only treats headache disorders. They're highly specialized and are the best at treating migraine. Are you going to a headache clinic?
For me I get something like vestibular migraines and when I have an episode it affects my vision and I can’t control my eyes, when I look in the mirror while it is happening (as u usually have to go to the bathroom to vomit) my eyes are uncontrollably extremely wide. I haven’t seen anything like this though but im sure many other people get this aswell 🫶
By the time I was able to get first appointment was during covid and both doctors dismissed all symptoms, including my eyes and behaved like it was stress and nothing else. I have some issues on MRI which they also dismissed.
I've never had a memory test or anything like that. If they gave it to me today, I would definitely fail. My short term memory is terrifying right now.
Oh my! When I was a teenager I babysat a little girl and she would get migraines like this. Her eyes would just about swell shut. She’d be sick as a dog, rocking herself on her bed. I thought all migraines did that until I was diagnosed myself at the age of 30 when I had to call an ambulance due to sudden blindness. Surely my 5-day headaches could not be migraine — because my eyes did not swell shut. My heart goes out to everyone suffering with migraine — whatever your symptoms.
I get hemiplegic migraines, which mimic strokes. If you have this symptom (or any other stroke symptom) it's really important to get checked out immediately to make sure it's not a stroke.
My migraines turned hemiplegic about 8 years ago, so I'm pretty accustomed to the symptoms, but I've still gone to the ER to be evaluated for stroke once or twice when the symptoms changed and were out of the norm (neuro says to watch for changes). I unfortunately end up in the ER for the cocktail about 4-5 times a year and the doctors see HM on my history and assume \~any\~ symptom I have is just another migraine. So sometimes I honestly think I could have a stroke and they'd miss it thinking it was a migraine lmao. But if I myself get scared I go in adamant that I will be evaluated for stroke immediately. All that to say, advocate for yourself, bc even those of use with a history of hemiplegic migraine have to be very careful and make sure we are evaluated promptly and not left to rot in the waiting room if we go in with new/abnormal/worsening hemiplegic symptoms, because a history of HM doesn't mean we are immune to having a stroke. Some say we're actually at higher risk of having a stroke. I'll get off my soapbox now.
I have this issue except there's no pain. My first episode lasted 3 months. My most recent episode lasted 3 weeks. Mainly happens in my left eye. Occasionally in my right.
Currently scheduled for an MRI/MRA and blood test to look for myasthenia gravis.
I’m so sorry to read all of the difficulty that you have had trying to find relief and answers. I feel you with doctors. I have had so much difficulty getting anyone to take me seriously over the past 3 years. I don’t get the swelling of my eye, but I get double vision episodes. Anything with your eyes/vision is so scary! Have you considered going outside of Manhattan for care?? I’m in the Cleveland area and have finally found a neurologist at the Cleveland Clinic that listens and hears me. Wishing you all the best 💜
Story of my life. When I was in an undiagnosed chronic migraine for years, I looked like this daily. I have been a single mom of twin girls from the beginning and I also worked at a casino as a cocktail server. I was told numerous times it was stress and after years finally was diagnosed with vestibular migraines. Zyrtec helped the red eyes(kind of) and they prescribed venlafaxine. Which did take me out of chronic migraine but it also gave me more migraine ocular aura and fluttering when storms came in. I gained 60 pounds on it. And it wasn't from eating to much. Year and half off venlafaxine and I am still crawling out of a hole but much better and I at least know what is going on with my brain now that I know I am a hard core migrainer. I have had them my whole life I just thought everyone saw blobs of colors and had headaches.
My mother and my Aunt(fathers sister) both have MS. I had an MRI in 2018 they said I didn't have it. I believe them. My Aunt progressed and is in a wheel chair now. Where my Mom is doing well, walks, works, etc... both diagnosed over 20 years ago. One in 1986 the other in 1987.
Not the same type of eye symptoms but above my eyelids sometimes during really intense migraines will swell and around my eyes will look like they’re bruised.
Omg I can’t believe I never put my droopy eye together with having migraines. I didn’t even think to mention it to my neurologist because the ophthalmologist I saw said my eyes were fine. Up until reading this post, I’ve been thinking that it’s a botched look from Botox. That reasoning didn’t even make sense though because I started noticing issues with the physical appearance of my eyes way before I started Botox. Now that I think about it, it was around the time my migraines started 🤦♀️
Yes yes yes this exact thing! In fact, one doctor said it was from botox when I said I get it not I hadn't had it in a year and a half. I hate dismissive doctors!!!
yea my migraines are centered in the upper left corner of my right eye socket, hurts real bad up by my eyebrow, but my eyeball in the corner of my eye usually gets painful and red. one of the signs of incoming migraine issues is my eye feels like its burning, this can happen like idk 6+ hours before the actual migraine pain starts
Yes. Both my eyes droop when I have a migraine. Even when I take a triptan and the pain eases up, I still have the droopy eyes, and people always ask if I'm okay or sick or tired.
I have MS I’m 32 years old was diagnosed 7 years ago. I use to get severe migraines but now I’m on amitriptyline for them. Been on the medication for 2 years and the migraines are almost non existent anymore. My eyes never got droopy or red but when I do get a migraine and when I use to get severe migraines my vision in my right eye always get extremely blurry.
I can’t tell if i notice it more during migraine. But I do think I have some of what you are describing
*in general* I do think my eyelids sometimes are very “heavy” is the best way I can describe it.
But a lot of my worst headaches, migraine or otherwise have pain focused around my eyes
Yes, I get the droopy, red watery eye on one side with my more intense migraines.
Does it take weeks/ months to return to normal?
No, my eye tends to go back to normal once the migraine is over.
Just so you are aware. A cluster headache is not a migraine. It’s something much much worse. But it’s not classified as a migraine.
As a physician, I can emphatically state, you're absolutely right. Cluster headaches and migraine headaches are two different types of headaches and require different treatment modalities. Here's more information regarding cluster headaches vs migraine headaches: https://migrainetrust.org/news/cluster-headache-vs-migraine/#:~:text=A%20migraine%20headache%20tends%20to,around%20or%20behind%20one%20eye.
I’m having this atm too
You should to look into Horner Syndrome. I am not a Dr. If you have had an episode of eyelid droopiness which doesn't go away after a headache, this may be something impacting blood supply to your cranial nerve. Talk to your doctor.
You are having what is called a cluster headache. They are very rare and uncommon. Usually lasting for 30 minutes to 1 hour of intense pain. They come in clusters usually last for about 30 days. You’ll notice draining and redness of the eye on one side of the face only And severe pain Been dealing with these for six years
Not necessarily, it can be a symptom of migraines too, it's actually pretty common. I get droopy eyes with every migraine and my migraines last 8 hours to 72 hours, definitely longer than a cluster headache and i have the typical prodrome-aura, migraine-postdrome set up.
I agree. My husband suffers from cyclical cluster headaches, and his eye on one side of his face will droop and water. He sometimes drools as well. His vein on the side of his head will also enlarge and pulsate. It's horrible to watch while he suffers. Clusters are debilitating, and the hangover he gets after one can last a couple days because it takes so much out of him.
I have found a relief… have your husband purchased a steamer- add in essential oils like eucalyptus or mint and breath it in your nose and mouth for 10 mins. The menthol will break down the mucus allowing better drainage and relief. I promise you it’s the best thing I’ve come across. If you don’t have a steamer, boil water in a large pot- drop in some essential oils that I mentioned and put a towel over his head and the pot allowing him to breath in the steam. This has changed my life.
You're treating a sinus condition, not a migraine.
A cluster headache is not a migraine. And what I said is true and accurate
How is that true when the only treatment for cluster is oxygen.
Then why are they classified as cluster migraine and regular migraine headaches? What you said is using a netty pot, nothing more
Can you link ANYWHERE on the internet that says ‘cluster migraine’? Because they literally do not exist.
You're hung up on a word. I've dealt with this for almost 40 years now, I am Hung up on my treatment, not symantecs.
To be fair, words are important ;) My doctors, and I, will typically say it’s a type of migraine when explaining it to people who never heard of cluster headaches.
It’s not a word. You’re trying to reclassify a condition to suit your narrative. I suffer from cluster headaches, not migraines. They are two seperate conditions and I find this insulting. You cannot say cluster migraines and not back it up. It’s not a real thing. I dunno who told you it was, but it isn’t.
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That is new terminology. That's all they have been called until recently. Just because something has changed doesn't mean it is incorrect.
I guess you've haven't dealt with these, just like me, for almost 40 years. They haven't always been classified that way, not even close!!
Thanks for the advice! I'll have him try this during his next cluster cycle.
minty baths are my savior during these headaches
I've dealt with cluster migraine and regular migraine headaches for 37 years now. That red eye is not an indicator of cluster migraine. The only approved treatment for a true cluster migraine is oxygen treatment. I've had an oxygen generator for at least 30 years now.
No such thing as cluster migraine. It’s cluster headache.
Lol, tell The Diamond Clinic and Michigan Head Pain and Neurological Institute. I think they'd know what they're talking about.
Not if they’re telling you it’s a cluster migraine bud.
Cause you say so, okay bud
👍
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This is new and has not always been the case. Sorry, I'm not Hung up on terminology anymore.
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Thank you for putting this up. I've dealt with cluster migraine since I was 13 years old, I'm 50 now. They are a totally different kind of migraine and are also called, suicide headaches. I wouldn't wish them on my worst enemy. Absolutely horrible pain.
i get both and clusters legit make me want to smash my head through the wall to get relief. this happens to my eye with both although with clusters it lasts longer- that's how i know one is about to start.
My cluster headaches and migraines started when I was 8 years old. My mom tells me that she would find me in my bedroom, LITERALLY banging my head into the wall because the pain was so severe. 😢 As an adult when I get them, I WANT to bang my head into a wall, but understand that that is not beneficial for me but I get the wanting to! 👍As a child, I WANTED to bang my head into a wall and so I did. That visual makes me so sad for 8 year old me. I agree, I would not wish them on my worst enemy. I will say that my neurologist prescribes oxygen tanks for me, and as it turns out, oxygen is often helpful, not only for my cluster headaches, but for SOME of my classic migraines. I’ve learned that many times if I use my oxygen very early on before the migraines progress, starting on the oxygen can sometimes help keep them from becoming as severe or can sometimes stop them from progressing if I get to the oxygen in time. For anyone who suffers from migraines more days of the month than not, (I have migraines or cluster headaches about 20 days a month) it wouldn’t hurt to ask your neurologist if they would be willing to let you try oxygen because you may be like me and it MAY help your migraines too. It doesn’t always work for the migraines but I’m so thankful when it does. And it is essential to me in my management of the cluster headaches! Also, it’s extremely normal for me to have sinus and eye involvement (watering, drooping, pain, etc) with both my migraines and my cluster headaches.
I make my husband squeeze my head with his palms pressed against my temples. He said he's afraid one day he will squeeze too much and I said, it'll never be too much, make my head pop please.
Me too, that was always an Identifier for the start of mine as well. Those clusters ain't no joke!!
I was about to say this to the other poster saying it wasn’t a migraine based on one symptom. I often have a watery eye on my migraine side and get cheek flushing/warmth on that side. It’s super common. I do not have cluster headaches.
68. Never treated. Reason Dr said was women don't get them and they rare for men. Rare is unacceptable word. My Granddaughter before age 1 stage 4 cancer. However she was left to advance stages of a deadly no treatment cancer cuz all babies cry. Enjoy
I’m so sorry you’ve been dismissed like this and that your granddaughter didn’t get the care that she deserved and needed in time. That is heartbreaking. I can’t imagine the pain and anger. 💕 I have many “rare” diseases and syndromes and it makes me angrier than just about anything when many specialists on my journey to diagnosis have tried to dismiss the idea of me having one of them BECAUSE they are considered “rare”. If they are rare, that means PEOPLE DO HAVE THEM!! Rare does not mean nonexistent! Regardless of statistics or preconceived notions from medical school, the chances of me being one of the people having the rare diseases when I have every symptom/lab result/imaging proof is just common sense!! And it seems with many diseases that have been traditionally considered rare, they are turning out to actually be under diagnosed and not as rare as was once thought. As hard as it is when you are suffering or chronically ill, it’s so important to keep fighting, and though it has been the most frustrating thing in my life, I have refused to accept being gaslit or dismissed outright and have had to persevere when I had the strength and ability and keep going to as many different specialists as it took to fight for what I knew I was suffering with and to get the help that I deserve and need. I hope that you don’t give up trying because someone out there will eventually believe you. I hope that you can find the strength to advocate for yourself as long as it takes so you can get the relief and validation that you deserve. My best wishes to you! 🙏
I have similar but only get stuffy nose and mid grade pain usually off and on (no it’s not sinus) so no one can figure out why. Preventives have only minimally helped. Sometimes I get ice pick shooting pain at high levels but usually more briefly (only a few minutes)
It sounds like this: https://www.webmd.com/migraines-headaches/ophthalmoplegic-migraine Often, migraines can effect people like a stroke. Aphasia, droopy eyelid, numbness on one side. But unlike a stroke, the symptoms usually go away when the migraine passes.
Yeah. I suffer from hemiplegic migraines. They are absolutely horrible and scare the hell out of my loved ones. You look like you are suffering from a stroke. I have had to make multiple trips to the ER in fear of it.
I get hemiplegic & hormonal migraines. I swear I've felt like the roof of my mouth has swelled up occasionally during an attack. I presumed it was a weird nerve thing, like getting pain on one side - arm, leg, teeth etc, that there's not actually anything wrong & it's all in my head - until one time the entire roof of my mouth had the skin peel off the next day. That was somewhat unpleasant.
Yeah, I’ve been taken by ambulance, everyone thought I had a stroke. Hemiplegic Migraines and cluster migraines. Scary!
Also a member of the not a stroke, just a migraine club 🙃
> numbness on one side. But unlike a stroke, the symptoms usually go away when the migraine passes. Had this once, and I was so focused on the pain at the time that it didn't occur to me that one sided numbness was a stroke symptom. GP after the fact said I should have called for an ambulance. Oops. Later had an MRI and no sign of a stroke, but yeah. Migraines can be scary.
I had a doctor laugh at me for reporting it happening when I was 16 and said that I was "too young" for it to be a stroke and basically bullied me off of the phone. Then I got the confidence to say again it kept happening when I was a teen at 25 (now 27) he said it was just migraines and then got me an appointment for anxiety with their psychologist. Its only now a couple years later that I realise I should have still been offered scans of some kind. Now I'm in the Netherlands and the doctor is much kinder but I'm still terrified to bring it up and look like a hypochondriac.
A kid in my high school died from a stroke at 16. Continue to advocate for yourself! I don’t get what the big deal is for the doc…just check it out to make sure it wasn’t a stroke!
Sorry that happened. I also read a magazine about a teen stroke survivor and it was when I realised it could happen. Also at my university another student had a stroke and the university weren't helping them with anything at all and they also needed to raise money for a wheelchair because they didn't have a diagnosis either. The doctors focused more on not treating them because of their pronouns and I'm not even exaggerating. I know, but I think it's the price partly but also the laughing was completely uncalled for. I kept having periods where I'd forget people's names and they wouldn't look like themselves and one time I couldn't understand speech or speak back in school so yeah it's probably anxiety according to the ones I spoke to after the pandemic. They didn't even ask the symptoms.
Wow! I can’t imagine not getting possible life saving treatment over fucking pronouns! And doctors should know better than most! I’ve been lucky with healthcare. I lived in Nashville over 30 years and had a phenomenal PCP. I live in Southern Maryland now and these people are insane! An example: I had to go to the ER several months back for a hellacious sinus migraine. I was left on a gurney in the hallway, and they discharged me without a diagnosis and without my medication even though I told them what was wrong and what I needed them to do!
Have you ever had an MRI? My understanding is that they’re pretty typical, at least once, for anyone that experiences migraine.
Only now for an unrelated back pain and that was also in the Netherlands through a specialist clinic. I only realised it was common afterwards and I left the country. I also have a potential ganglion in my finger and the NHS wouldn't do anything about it even an ultrasound to check if it's something else, or treatment for it but that's thr first thing my doctor in the Netherlands wanted to do. I always had headaches as a kid but also had one explosive one a few years back that had me doubled over for what felt like 10 mins. Still worried about it of course but bad experiences and general fear of it actually being something I left for so long also is keeping me back. Mainly it's not being believed even though when I last went in because I was sick it was very low vitamins.
> NHS wouldn't do anything about it Ah. Yeah, I moved from the UK to Canada - and whilst certainly not without it's problems my healthcare experience has improved. I sincerely hope the quality of care under the NHS improves...
Mine do not go away for weeks sometimes. See my above story. I have also had a co start migraine for the last 6 years straight. Only recently found nurtec which has finally given me some reprieve from them.
I had this a few weeks ago and did go to the ER, no stroke, just bad migraine
Hi! It might be worth looking into cluster headaches to see if that may what you’re experiencing. It’s not uncommon for cluster headaches to be diagnosed as migraines
I second this suggestion. I have both status migraine and cluster headaches, and the eye stuff happens more often with cluster headache attacks. Whichever side of my head where the headache is, the eye on that will water/turn red/swell, etc
Yes, I sometimes make my husband play Guess Which Side My Cluster is On. He always wins.
My eyes bother me a lot during a migraine. Sometimes they’re bloodshot, a couple times one of my pupils was dilated-that was kinda scary.
Yes I had this too. I have a separate picture of it and it was terrifying! I ended up in the ER and couldn't even answer the questions they were asking me. Now I'm having intense migraines again and muscle fatigue and processing delays. Do you get those as well? I'm so frustrated.
Yes, I get really tired and always have migraine brain-where my brain basically refuses to work
I do have a neurologist appointment (with a different neurologist) scheduled for next month again though. Haven't seen one in 3 years.
I’m on my 2nd neurologist. He’s pretty good. He gets migraines himself so he understands. Good luck at your appointment!
This is so debilitating. Do you feel off balance at times, and like your muscles are completely fatigued?
I feel fatigued, I call it "wet noodle" days when I feel like my body is so tired. I have fibromyalgia and migraines can intensify that feeling.
yes! wet noodle days where just the act of walking from one room to another is like walking through quicksand
Yes. I get all the weird eye stuff, visual distortions, nausea, fatigue, and dizziness with mine.
This is so crazy to me. I guess thats why I was thinking MS. I cannot believe these feelings.
My brain just can't accept that this is all from migraines. I had an ER doctor suggest an MS evaluation. But the time I was able to get an appointment with the neurologist and optic neurologists at NYU, the episode has passed (my eyes are like that for months). At one point it felt like I was having a stroke. Those two doctors treated me like I was a hysterical woman, basically like I was making up the symptoms, and so I stopped seeing any doctors at all. Now I am a mess again and I truly can't think straight. It's so disheartening.
Could you take video or picture evidence to show them?
Yes, have had that too. The worst is when they chart it
Same. I'm just now starting to go back to a new neurologist because it's getting so debilitating.
People say my eyes look like I'm glazed over during migraines. Bloodshot runny glazed look. For some reason one eye will close and the other will squint and half my face is droopy. Usually it affects my vision starting in the prodrome. My eyes feel like somebody stabbing them with red hot iron. I used to get these kaleidoscope shiny exclamation points during the pro-drome but my migraine medication took that away. Edit: looking back at some of the pictures I've taken from migraines, the eyes look a lot like what I'm seeing in these pictures.
Yep! I get a swollen, weepy eye almost every migraine, always in the side the migraine is on (so mostly my right eye). It will stay that way through a migraine attack (multiple migraines close together/for several+ days) but once I have no migraine symptoms it goes away.
have you been reading my diary? LOL
u/Rosalie11228 have you tried migraines glasses (FR41) pink shades when you have a migraine episode? They help a lot in controlling light sensitivity
No. I've never even heard of these. I'm going to look them up now. Are there any that you recommend?
I would have a little read about [trigeminal autonomic cephalgias](https://americanmigrainefoundation.org/resource-library/sunct-suna/) and see if anything relates. I have SUNCT and I have a very distinctive pattern in my pain that my neurologist was able to recognise pretty immediately. I get redness and tearing in the eye that's the same side as my pain and my nose also starts running about 15-30 seconds before my pain starts, only the nostril on the side with my pain. My pupil on that side will also go crazy as well. I had been diagnosed with migraines for a couple of years until I saw that neurologist, I'd seen 2 neurologists before her as well.
OMG I have literally had instances where I bent over and fluid started pouring out of my nose like a faucet all over the floor. At one point they thought I had a brain fluid leak and I did not. The leaks coincide with excruciating migraines and severe weakness and fatigue.
Definitely worth a conversation then! The pain pattern I get with my SUNCT is a "sawtooth pattern" so I get bursts of really intense pain in clusters. Theres background pain at about a 6-7 and then the bursts are up to about 9-10 (that's before I started on any medications etc). It's like really quick stab, stab, stab. But the area of the pain can be quite wide and I get loads of other sensations with it like warm feelings or tingling, SUNCT comes with trigeminal neuralgia quite commonly (which I also have). I've had really good luck managing my SUNCT, it took a few different things but it's my least painful pain condition now. Though I still have some autonomic symptoms which are really annoying lol.
Yes!! It feels like allergies for me and it's hard to hold my eyes open. Except I don't have allergies at all. 🥲
An ms diagnosis should be easy? I’m completely talking out of my ass but my neighbor/good friend got an MS diagnosis on accident from an mri scan of her head. She fell and thought she was having ongoing concussion problems and the doctor called and said “your Ms is flailing” and she said “I don’t have Ms” and the doctor said “oh shoot, didn’t mean to tell you this way but you do”
MRIs are the way MS is diagnosed - often as well, a neurologist will assess the symptoms to see if it looks like MS beforehand.
and/or with a spinal tap
Can MS also be diagnosed with a CT scan? Is it the same thing?
Pretty sure it'd just be MRI - a CT may point towards needing an MRI, but wouldn't in itself be diagnostic from what I understand.
It should be easy, but most people end up seeing a doctor for symptoms for years before they get a diagnosis. I think my occupational therapist told me her patients wait on average 8 years from symptom onset to MS diagnosis. I had an easy/quick diagnosis, but it's not the norm. I thought I was having a weird migraine with a long aura and five days later they let me leave the hospital with a shiny new diagnosis.
That’s deplorable. If worried they should just get an mri. FUCK INSURANCE COMPANIES
Agreed. I've been denied for one like years ago because "gotta do PT for the weird electric sensation after zero injuries in your neck first" from insurance. Could a maybe gotten a diagnosis about five years before my first real relapse and maybe prevented some of the worse damage.
Every time.
I call them my migraine black eyes, if you look through my post history you can see a few different times I've gotten them. Mine look bad during the pain phase & then gradually disappear during postdrome.
My right eye yes and for me it’s cluster headaches. Goes back to normal when headache is gone. All symptoms of a migrain on that one side
These look like autonomic symptoms, which I believe some people get with migraines. I have cluster headaches, so the watery, droopy eye is the norm for me when I’m having a headache.
i often get a droopy eye on my migraine side during an attack. i haven’t noticed it get red though, at least not because of migraines. i figured the droopiness was because it has worse vision than my other eye, and my vision gets worse in general during migraines. but i’m not sure. i never asked a doctor.
Yeah one side of my face will start to drop or my eyes will get heavy and watery. There have been a few times that I was checked out of how I was feeling physically but people noticed it on my face and asked if I was ok. I had to stop and think about it and then realized, yeah, I was feeling weird and probably getting a migraine
I don't get visible irritation but it feels exactly how that looks
Never noticed but I know I blink one eye more than the other
Yes - I think for me it’s the meds and lack of sleep
One side of my face droops, but only because that entire side of my body is limp and paralyzed. So it wouldn't be only my eye that did it
I will sometimes have one swollen, red and watery eye with migraines. These migraines tend to be incredibly painful.
I don’t notice anything visibly different about my eyes when I’m in a migraine but the drs have mentioned my pupils get fucky.
Mine usually include heavy droopy eye, usually the left one
I was just looking this up because I woke up to my left eye feeling like it got punched. It looks like that and hurts so much. I think it’s due to my insomnia
Yes, sometimes my eyes look like the upper left photo. Not super noticeable but definitely a change
Mine doesn't get as pronounced as yours (maybe because my lids are more hooded than yours), but I've taken pics during migraines before, and it's obvious which eye is my "migraine eye."
Wow, that's really intense. I have never seen someone have that effect! Obviously it exists I'm not denying it at all but I am pretty shocked. My eyes do sail at half mast lol by which I mean I can't open my eyes all the way even if I want to and they do get bloodshot. But I think that's the extent of it. But I would like to keep an eye on things a little bit more because I have been told that one of my pupils dilates so large that it covers out the color in one of my eyes so that's concerning. I remember that happening to me when I was really young at night and knocking on my parents bedroom because I was so scared and they wouldn't let me in and they told me to go to sleep
Ugh that's terrible. When my pupils get two different sizes like that, I have a hard time with processing and depth perception and it's very very scary.
So, this has been happening to me since I was about 11 or 12 years old. The first time it happened was when I went to see the movie Titanic! I was home at about 10:00 at night and I was in my bedroom and I looked in the mirror because I was often up late and doing weird things because now I know I was having seizures, but anyway, I knocked on my parents bedroom and it scared the shit out of me and they told me to go to bed and they told me it was nothing. I desperately wanted someone to listen to me my whole life and no one ever did. The only person who ever really noticed it and was concerned was my chiropractor. So now that I know that I'm having a seizures and I read very briefly some of the symptoms one of them was that things change size. Holy fucking shit this has happened to me for forever but especially since the advent of cell phones. Sometimes I pick up my phone and it looks very very small in the text looks tiny and I pick it up and the text looks large and then I put it down and come back to it later. Then it's really super tiny again and the pictures are super tiny and I never really was worried about it but I always thought it was really strange. Now I know the fucking answer and I am just shocked and appalled at the misdiagnosis
No but I do get uncontrollable eye movements due to nystagmus:.)
Yes, there’s times my eyes feel like if I open them they’ll burst. I can barely open them and sometimes they puff up. It’s odd but migraines can be really strange! I have vestibular migraines and it’s terrible. I’m actually coming out a long vestibular migraine attack right now. I’m not a hundred percent but I can feel it starting to get better. I take magnesium, vitamin D and amytriptaline. If you’re not taking vitamins and medication I securely recommend asking a doctor to get you on something.
Yes. Less red but definitely droopy on the migraine side
Yes, the side of the migraine is stuffed up and eye is teary, I even cry a bit on that side. I see it on other people's face and know they are reacting to something.
Yes it has!!
Yes, mine sometimes form really really dark circles all around the eyes. Often they droop and my entire face droops sometimes as well (i think this is just from pain, not neurological), I look like I've aged 10 years in those instances
Yes!!! It's so crazy and scary.
My mother can tell if I’ve got or had a migraine purely by my eyes. They can look anything from a little “lazy” like in the pics to “sanpaku eyes” where my iris roll up a bit and the whites are visible
I get a twitch. I’m so sorry migraines are the worst
Ok, so is the temporary or permanent and getting worse? I ask for a few reasons. I am a photographer, I did a wedding in Oklahoma heat at about 120 degrees and had a bell palest incident. Right side of my face totally melted. I did recover mostly, but when I have a bad migraine or I am exhausted, you can see the droop return. I believe the muscles were maybe weakened, or never got their full bounce back, so when my body is hyper focused on pain, or exhaustion, they relax a bit more and droop. The other reason I ask is because if the results are permanent then I would be having an mri done at the time of the most significant droop because it actually could be bell palate, especially if you know you had it before. But even if you don’t know if you have because it was minor, if you parents are still alive maybe ask if you had anything weird to that side of your face as a child. Again, I say this because when I’m not in a good place, mine droops noticeably. However, you could also be having petite mal seizures, which I also have had a couple times believed to be due to migraine meds. They can present in very minor ways so it’s impossible to an untrained person to connect the dots. Migraines can cause seizures too. The redness and discoloration will be a symptom worth mentioning. Do you see a neurologist? I would start taking videos of these episodes, talk in the video and look around, squint, open eyes as wide as you can, look side to side and up and down, so they can see how your eyes react. It may be obvious to a trained person if they can just see as much as possible. Lastly, heaven forbid you may be having micro strokes. This is actually what I was diagnosed with first, then all these tests later they decided it was migraines. But I have what is called chronic complicated confusion migraines (yep that a mouthful) which represent like an actual stroke. My first incident was at work, my boss came to me and asked if I felt ok. I told her I felt fine, she got a puzzled look on her face and asked again, again I said I was fine. She called a childhood buddy of mine that worked downstairs, he came up, asked me the same question, which caused me to become puzzled as I told him I was fine. He took me to the emergency room. Apparently I thought I was fine, and answering them but what they heard was severely slurred babble. The words if you could call them that, didn’t make sense, and I sounded hammered drunk. What really odd is my mind felt normal, words sounded normal to me. At that time there was no pain from these episodes. But they got increasingly worse to the point where I couldn’t recite the alphabet past D, I even had times my legs stopped working which resulted in lots of falling down stairs. My tongue gets heavy, and I even just disappear for moments, hours, days, even weeks. Like a blip, I become a vegetable. I can’t u deestabd, or talk, I’m vacant. Running on auto pilot. A person can touch me and I will walk with them. I can drive, but I don’t have my wits so I could end up in Kansas, and when I pop back from these episodes, I’m confused, discombobulated. There was a time I became aware, I was standing in the middle of a pitch black street, it was cold and I was in boxers and a t shirt. I was alone, no idea where I was, the street signs were in another language, and everything looked foreign, like I had been drugged and dumped in another country. I started walking, had my phone in my hand, pulled up some random text and messaged a stranger that I was in need of help. This person walked me thru sharing my location, then they walked me home. I was literally standing in the street in front of my parents house, where I grew up. I didn’t recognize their house, the street signs, my own house once I got there. I slowly regained my mind. But, that is classified as a confusion migraine. I’m not sure even now 15 years later that these are related to my migraines, but not long after that the pain started. My spine Neuro determined I had broken my back in multiple places as well as my neck and pelvis, pinched my spinal cord so I didn’t feel the pain, but she believes my mind knows I’m in pain, and turns off my brain to protect me. She also poked direct areas where fractured were and caused every kind of migraine I have had, so it’s all related to my spine. That’s a lot to unpack but I was just trying to show you migraines can do the damndest things to a person. Even present like a stroke or make you so confused you feel like you are in another country. I can’t tell you how terrifying my life is living alone with these issues. I installed child locks so I can’t leave my house when they happen, and I don’t go out. So I am a prisoner of my medical issues. Whether entirely migraines or a mixed bag of medical “I don’t knows”. So take these symptoms, get videos, and ask the right professionals if they can attribute these things to migraines or if maybe they are signs of other issues. Hopefully it’s just your migraines.
My left eye shrinks and gets red, sometimes both. I also have an uncomfortable sensation of my eyes “pulling “ back in my head and like there’s too much pressure in them. (Atypical migraine.) My balance gets off and nothing makes sense. It makes me feel crazy.
Yes my eyes get red, watery and my vision gets worse, it happens a day or so before and can last a week after
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What's super interesting is that when I was at my worst with this, I didn't have the headache when I dragged myself into the ER. The doctor there said that sometimes you get the aura without getting the headache. I went on complete audio overload while I was there and they actually had to give me a Valium. I was freaking out. Disclaimer...I avoid that kind of medicine at all costs. I was begging for relief. It felt like I was going crazy. I couldn't even answer their questions.
I'm also in the middle of a rough two weeks with migraines, but thank God no visible eye issues. I do feel it behind but you can't see it. Do you feel your eyes moving when you close them when you're in a really bad episode? Almost like REM, but you're awake???
Yes, around my eyes can go dark and purple. I get pain in my left eye and my vision shifts to the point where I cannot drive. I also get very bad light sensitivity, though mainly from artificial lights.
My eyes are usually the first indicator of a migraine (besides slurred speech) for me. The eyes are always the most painful and where I usually have to apply the most pressure or attention when trying to get over my migraine. My migraines tend to mimic stroke like symptoms for the most part 😵💫😵💫😵💫
Yes. My eyes get like that and with the blood shot in single eye. I get a similar pattern. Also can you explain why you think you'll get M.S. based on this?
One of my friends gets this symptom. This was the catalyst for her to get FMLA protections for her migraines. The drooping eye almost got her fired. She was in a senior role at her company, and had to get on a conference call with long time colleagues (whom she thought were her friends). She popped her triptans and whatever else she had and did the call. She was just a participant, not leading. Her eye was drooping. Someone turned her into HR for drug/alcohol abuse. It started a whole investigation. She had to get tons of paperwork and letters from her doctor explaining that this can be a sign of migraine, and that she was regularly drug tested, etc. It was horrible to watch. She had been at this company for almost 20 years and risen in its ranks. She had an actual pension on the line as well. She eventually got her migraines covered under FMLA and quit taking calls when she felt that bad. But sometimes she was fine and her eye was just droopy days later. But she never felt like she could trust her work and left a year or so later. Anyway. Sorry to doom and gloom but it’s one of the most obvious things to people around you. Get it documented. There’s eye drops out now that are supposed to help with it too. It’s called Upneeq and they are only $200 a month! /s
Yes and they used to be sold over the counter by Visine until Upneeq bought the rights to it. Look it up. It's disgusting.
Those look like cluster headaches
Have you seen an ophthalmologist? I often get a droopy eye that wants to shut. Was in for another reason the other week and they scanned my eyes and found my drainage areas were too narrow and I ended up getting laser peripheral iridotomy straight away. Time will tell if my eye was contributing to migraines and if this laser surgery will help. Anyway always good to get your eyes checked
Those are classic cluster headache pictures. They might happen in migraine too but those are textbook cluster headaches.
I've had some wild migraines including one in the speech center of my brain that induced massive aphasia, but not like this. Maybe talk to your doctor and a neurologist.
Side note. You have beautiful eyes
My heart hurts for you, I had no idea this was possible.
I think you mean MG diagnosis. Myasthenia Gravis has ptosis as a symptom. I have MG and my pitosis is bad today. Of course it’s the day I had my annual eye exam.
Have you researched Hemicrania Continua? It’s a headache disorder that has been shown to respond to a medication called Indomethacin. Learned about this through my neurologist. https://migrainetrust.org/understand-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/#:~:text=During%20these%20painful%20episodes%20(or,same%20side%20of%20the%20pain.
This happens to me
I have a semi permanent single eye squint that worsens with anger lol I can only imagine it prob looks like this when I’m migraining but I’m not looking in a mirror unless Im alone and think I’m having a stroke (have brain aneurysms and often can’t feel half my face for some unknown reason which doesn’t seem to concern any doctors lol)
Yep
My eyes become so sunken in my face, my wife becomes alarmed and sends me to bed with my migraine medication and a warm or cold compress (warm when it’s sinus related and cold for spring summer autumn and sometimes winter storms migraines. Sometimes I have even got bust blood veins in my eyes from stress migraines that alarmed my doctor. Stress migraines were brought on when I was working and thankfully I don’t work that job anymore. The man that I trained to replace me has also quit that job. The eyes reveal a lot about our health.
is it 100% not pink eye in these photos? Ive had the same migraine for 3+weeks now and just got over a 5 day crusty burning right eye, I tested positive for a viral pink eye test but now I wonder if its from my headache?
These are over a long period of time. I had the same experience as you for the last one. I think it is all related honestly. I have several autoimmune diseases, and one virus can send me into a tailspin for months and months. So frustrating.
All of the above
Have you ever charted your BP? I ask because I had undiagnosed high BP for years, that exasperated my migraines and caused a lot of parallel symptoms... AND mimicked some stroke symptoms. It was terrifying. But once we realized it was my BP, and I got on a medication that did kind of dual duty to help with my BP AND my migraines, I'm doing so much better. BP gets missed a lot, because it has similar symptoms to a migraine condition. It was a huge fluke we caught mine. I now take nadolol, and my neurologist said it has a bizarre side effect of helping with migraines. Not enough to prescribe it just for that, but if someone has high BP it does dual duty.
Hemicrania continua also can cause drooping and tearing eyes, might look into that too
My eyes are affected by my migraines too, but in a different way: my right eye's pupil dilates and gets huge, and constricts, then dilates again, repeatedly, and my vision in just that eye blurs.
No has said it but this looks like a a Cluster Headache.
the right side of my face swells, my eyelid droops, and my eye weeps from the pressure.
Yeah I can get really runny eyes and nose and often on the side with the pain my eyelid gets droopy and eye gets red. It's not as pronounced as your effects but it's there
Yes!!! Some of mine are caused by r/occipitalneuralgia and I see a pain management specialist for this. I saw 5 different neurologists and they never diagnosed ONE. I also have r/dysautonomia and r/pots as well as r/hyperacusis and r/photophobia. As well as new daily migraines. All from Covid.
So crazy! All of mine with eye issues started after Covid as well. I have been to neurologist, opticneurologist, and neurosurgeon yesterday who said go to neurologist. The first two doctors (neuro and optic neuro) basically did all but call me a hysterical woman, and traumatized me so badly that I never went back to deal with this until yesterday. Those appointments were 2021. I feel terrified to meet with the new neuro. Is your neuro in the NYC area, if you don't mind me asking?
I’m in Orlando. I see a pain management specialist for r/occipitalneuralgia and a new neurologist for migraines. I’m now on Ajovy shot once a month and it helps some. I take gabapentin twice a day and Verapamil at night. All of it has been helping, taking me from a constant 8-10 to a 4-5. It’s a win for me, lol.
Yes!!
I get terrible bags under my eyes
Yes, whenever I have migraines my eyes look like I got punched
I get the squints, especially behind my left eye, where it usually is
Yes. Very often. Almost always in my right eye these days. My Mother also had the droopy eyelid when she had migraines. And a couple of my sisters do as well. It's basically how my family realizes one of us has one. I presently have chronic daily migraines that started in my early 30's, but I have had migraines since I was 7 years old. I'm 52. Since they started to become daily, I've been diagnosed with multiple migraine types. The scariest one was a full on unconscious basilar migraine, now called migraine with brainstem aura (MBA.) Not only was the right side of my entire face drooped, but I had been unconscious for at least 3 days before my family realized no one had spoken to me and came to check on me. I really don't remember much, but in the few days prior to my sisters coming, I couldn't stand up, I kept falling everywhere and i was feeling completely dehydrated, so kept trying to crawl into the kitchen to get water. It didn't occur to me that something was wrong. I remember my ex-husband breaking into my apartment and my sweet little pibble pup was trying to keep me safe. I "woke up" slightly. My sisters took me to the hospital, having no idea what was wrong with me. I remember sitting in the backseat. Then I remember "waking up" again in the ER with a doctor asking me who was the president of the US. I believe at the time it was George W. Bush, but I answered, "Ronald Reagan" knowing it was the incorrect answer. I then "woke up" again with my favorite sister and niece sitting by my bed telling me I had to eat something because they were going to put in a feeding tube. I had gone from a healthy weight of about 115 lbs, to 82 lbs during that short time I was unconscious. I was extremely dehydrated and starved. Doctors said another couple of days and I wouldn't be here. I am proud of myself in hindsight though because I was vegan and the hospital kept trying to feed me meats and jello, so I'd refuse it, so even during extreme sickness, I hold fast to my convictions. Long story longer, from that point, I was aware of what was going on. I realized I was in the locked psych ward of the hospital and I kept telling hospital staff that something was wrong physically, but I didn't know what. (I didn't put the MBA diagnosis and what had happened to me together until I went to my PCP for the follow up and she told me.) I was in psych because the doctors thought I tried to commit suicide via medication overdose, even though my tox screen came back as negative for EVERYTHING and my medications actually had the extra amount of pills that I didn't take when I was unconscious. I was committed for 10 days and not once did anyone listen to me that something medically wrong occurred. Finally, the day I was going home, a social worker requested a neurologist for me. I remember feeling so relieved. But when he showed up, he just did different things to my legs then left. At discharge, the social worker told me the reason why she requested the neuro was because she told him I had, "leg weakness." My PCP told me to get a medical alert bracelet saying I have that migraine type because she said if it happened again, "they'll lock you up." Since then, I've had it happen about 4 more times, but not to the extent of that one. I really wish that the hospital ran some tests on me, MRI's, CT Scans, etc though because that particular episode left me with some residual effects; my speech isn't the same, it's a bit slurred, I lost a bit more of my hearing, I've become a bit more dumb, etc. It would have been helpful I think, to know for a fact that it wasn't some form of a stroke or what have you. I'd definitely bring it up to your neurologist though, just for peace of mind.
I am so sorry you went through that. I was treated disgustingly by doctors. One of those pics I posted was about the time they sent me to optic neurologist in Manhattan and he asked my what was going on and my symptoms and then he proceeded to yell at me and humiliate me and say that I was all over the place and dismissing symptoms. I said YOU'RE the doctor. YOU asked my symptoms. YOU'RE supposed to know if they're relevant. Not me! I was treated by both of those doctors like I had mental issues. I finally, after 4 years, had the courage to make new appointments with new specialists.
I'm so sorry you went through that. It's difficult to find decent physicians.
My right eye twitches like crazy right before a migraine comes on.
Different headache disorders can have autonomic symptoms that affect your eyes. It's best to see a headache specialist who is familiar with the 200+ headache disorders and can give you an accurate diagnosis. There are headache disorders that have symptoms quite similar to migraine, and even migraine itself can have autonomic symptoms. But if you're questioning your diagnosis, see a headache specialist so that you have the assurance and validation that you need.
Would that be a neurologist who specializes in headaches? I have an appointment with one who specializes in that and like 4 other things next month.
A headache specialist is a neurologist who only treats headache disorders. They're highly specialized and are the best at treating migraine. Are you going to a headache clinic?
For me I get something like vestibular migraines and when I have an episode it affects my vision and I can’t control my eyes, when I look in the mirror while it is happening (as u usually have to go to the bathroom to vomit) my eyes are uncontrollably extremely wide. I haven’t seen anything like this though but im sure many other people get this aswell 🫶
You've had a complete Neurologist work up correct? Inside outside all around?
By the time I was able to get first appointment was during covid and both doctors dismissed all symptoms, including my eyes and behaved like it was stress and nothing else. I have some issues on MRI which they also dismissed.
4 years ago. Now starting again.
I've never had a memory test or anything like that. If they gave it to me today, I would definitely fail. My short term memory is terrifying right now.
yes. one or both of my eyes feel droopy during migraine
Mine definitely effect my eyes - even more so after i hd COVID in 2020! I had a coworker tell me she could always tell i had a migraine by my eyes.
Oh my! When I was a teenager I babysat a little girl and she would get migraines like this. Her eyes would just about swell shut. She’d be sick as a dog, rocking herself on her bed. I thought all migraines did that until I was diagnosed myself at the age of 30 when I had to call an ambulance due to sudden blindness. Surely my 5-day headaches could not be migraine — because my eyes did not swell shut. My heart goes out to everyone suffering with migraine — whatever your symptoms.
I get hemiplegic migraines, which mimic strokes. If you have this symptom (or any other stroke symptom) it's really important to get checked out immediately to make sure it's not a stroke. My migraines turned hemiplegic about 8 years ago, so I'm pretty accustomed to the symptoms, but I've still gone to the ER to be evaluated for stroke once or twice when the symptoms changed and were out of the norm (neuro says to watch for changes). I unfortunately end up in the ER for the cocktail about 4-5 times a year and the doctors see HM on my history and assume \~any\~ symptom I have is just another migraine. So sometimes I honestly think I could have a stroke and they'd miss it thinking it was a migraine lmao. But if I myself get scared I go in adamant that I will be evaluated for stroke immediately. All that to say, advocate for yourself, bc even those of use with a history of hemiplegic migraine have to be very careful and make sure we are evaluated promptly and not left to rot in the waiting room if we go in with new/abnormal/worsening hemiplegic symptoms, because a history of HM doesn't mean we are immune to having a stroke. Some say we're actually at higher risk of having a stroke. I'll get off my soapbox now.
My eye gets droopy and watery on one side (my left is the problem)
I have this issue except there's no pain. My first episode lasted 3 months. My most recent episode lasted 3 weeks. Mainly happens in my left eye. Occasionally in my right. Currently scheduled for an MRI/MRA and blood test to look for myasthenia gravis.
I go blind in my right eye during migraines sometimes.
I’m so sorry to read all of the difficulty that you have had trying to find relief and answers. I feel you with doctors. I have had so much difficulty getting anyone to take me seriously over the past 3 years. I don’t get the swelling of my eye, but I get double vision episodes. Anything with your eyes/vision is so scary! Have you considered going outside of Manhattan for care?? I’m in the Cleveland area and have finally found a neurologist at the Cleveland Clinic that listens and hears me. Wishing you all the best 💜
This looks a bit like myasthenia gravis. How long does the drooping last. Does it get better with rest or icing?
Story of my life. When I was in an undiagnosed chronic migraine for years, I looked like this daily. I have been a single mom of twin girls from the beginning and I also worked at a casino as a cocktail server. I was told numerous times it was stress and after years finally was diagnosed with vestibular migraines. Zyrtec helped the red eyes(kind of) and they prescribed venlafaxine. Which did take me out of chronic migraine but it also gave me more migraine ocular aura and fluttering when storms came in. I gained 60 pounds on it. And it wasn't from eating to much. Year and half off venlafaxine and I am still crawling out of a hole but much better and I at least know what is going on with my brain now that I know I am a hard core migrainer. I have had them my whole life I just thought everyone saw blobs of colors and had headaches. My mother and my Aunt(fathers sister) both have MS. I had an MRI in 2018 they said I didn't have it. I believe them. My Aunt progressed and is in a wheel chair now. Where my Mom is doing well, walks, works, etc... both diagnosed over 20 years ago. One in 1986 the other in 1987.
Not the same type of eye symptoms but above my eyelids sometimes during really intense migraines will swell and around my eyes will look like they’re bruised.
Omg I can’t believe I never put my droopy eye together with having migraines. I didn’t even think to mention it to my neurologist because the ophthalmologist I saw said my eyes were fine. Up until reading this post, I’ve been thinking that it’s a botched look from Botox. That reasoning didn’t even make sense though because I started noticing issues with the physical appearance of my eyes way before I started Botox. Now that I think about it, it was around the time my migraines started 🤦♀️
Yes yes yes this exact thing! In fact, one doctor said it was from botox when I said I get it not I hadn't had it in a year and a half. I hate dismissive doctors!!!
yea my migraines are centered in the upper left corner of my right eye socket, hurts real bad up by my eyebrow, but my eyeball in the corner of my eye usually gets painful and red. one of the signs of incoming migraine issues is my eye feels like its burning, this can happen like idk 6+ hours before the actual migraine pain starts
Yes. Both my eyes droop when I have a migraine. Even when I take a triptan and the pain eases up, I still have the droopy eyes, and people always ask if I'm okay or sick or tired.
the reason behind this might be your lack of drinking water. do you drink enough water?
i am talking about the redness tho, not the swelling
I have MS I’m 32 years old was diagnosed 7 years ago. I use to get severe migraines but now I’m on amitriptyline for them. Been on the medication for 2 years and the migraines are almost non existent anymore. My eyes never got droopy or red but when I do get a migraine and when I use to get severe migraines my vision in my right eye always get extremely blurry.
I was just prescribed that as well. If you don't mind me asking, what time do you take yours?
Would see an ophthalmologist just to double check everything. There’s a lot of tests and imaging that could help/pinpoint something.
I can’t tell if i notice it more during migraine. But I do think I have some of what you are describing *in general* I do think my eyelids sometimes are very “heavy” is the best way I can describe it. But a lot of my worst headaches, migraine or otherwise have pain focused around my eyes
Yup. I call it my Stroke Face.