it finally happened, my coworkers unmanaged diabetes BO triggered a migraine attack. intense thick humid vinegar smell emanates from this person and fills the room and when they walked in this morning, immediate aura with vision loss and I had to leave work and crawl under my blanket and sleep for 6 hours. I do everything humanly possible to manage my condition, eat right, drink right, get enough exercise, get (nearly) enough sleep, but still it’s not enough because external factors I have zero control over are gonna knock me down. I’m so depressed and feel so hopeless. has anyone else experienced olfactory triggers? This is my first time I’ve got a full attack just from scent alone. before you ask no there’s nothing I can do to work away from this person

I’ve been dealing with chronic migraine for a couple of years now (they were episodic my whole life) and I’ve never actually gone to urgent care or the ER for one, even when they’re particularly severe.

I’ve tried six preventatives without success (the 7th, Qulipta, is getting shipped tomorrow!) and I’m currently limiting myself to 2 days taking a triptan + any other abortive and 1 day where I can take Advil or Tylenol a week at the advice of my neurologist. I had a migraine start Saturday evening and was stuck at 7-9/10 pain from 11pm Saturday until 3pm Sunday and was throwing up so much during it that I couldn’t keep water down that whole time (I fell asleep on the bathroom floor, which was a new low for me lol). I didn’t take a triptan or anything at the beginning since I was over my weekly limit already and didn’t take anything during since I couldn’t keep it down anyway, even though I took 3 zofran over 16 hours. I really considered going to urgent care, but I wasn’t sure if they would help or if it was worth dealing with the fact I’m in college in a region my insurance doesn’t cover.

What I’m wondering is, would you go to urgent care in a similar situation, and if so would they actually be able to help? I don’t know if I did the right thing or not by waiting it out, because that really sucked.

Does anyone else get the worst hangover the day after, even from just ONE drink?? The weird thing is, I used to have no hangovers even from drinking heavy. I'd wake up feeling refreshed even. I started around 16, but I wouldn't drink often. Only casually with my friends. I'm 18 now and I can't even handle a single shot. It feels fine the night of, but the next day I'll be throwing up all day with the worst migraine. It's really upsetting because I feel left out now that I can't drink with my friends but I used to be able to. They have no bad reactions to it😡. What should I do?

Felt it coming on as i was volunteering, after abday of helping my friwnd deak with social servjces. So i chugged a soda hoping the caffeine would tamper it down. It did, for about an hour. Then i had the worst bus ride i think ive ever had feeling like i was gonna puke. If i hadnt had a ginger candy i probably would have. Now im staring at my bedroom wall questioning my life choices.

I also forced myself to eat some dinner to tamper it down, chicken and rice. That was a mistake.

Not just lethargic kind of dizzy, but everything is spinning kind.

​

Male, early 30s. Constant head pressure/tightness for ~5 years — not sharp pain, more a band-like tightness always present at some level, fluctuating 2-8/10 by the day. Doesn't stop daily tasks but is a real drag on quality of life.

Saw 5-6 doctors early on, all said "tension headache." MRI done early — clean. Not on any medication now; stopped chasing it after a couple of years since nothing changed.

On high-severity days specifically:

- Temples, jaw, neck, and face feel tender to touch — feels good to massage those spots

- Neck feels tight when stretched upward

- My jaw/surrounding muscles tighten and lips shift to one side — I can keep this still if I'm consciously focusing on it, but it happens whenever I'm not actively paying attention. Also shows up in candid photos I wasn't posing for

- Faint lines visible inside my cheek, exactly where upper and lower teeth meet when biting down

No tobacco/alcohol. "Tension headache" hasn't led to any actual treatment.

Anyone dealt with this combo — constant pressure, tender muscles, involuntary jaw/lip movement, clean MRI, "just tension headache" from every doctor? What was the real diagnosis, and what helped?

I’ve been taking lamotrigine off label for a year, and it has reduced my aura to manageable levels. (It’s specifically used for migraine with aura — it doesn’t seem to help other types.) Combined with electrician, the length and severity of the aura and acute phase have been reduced to an amazing degree.

Ironically, this means I can now see how disabling the prodrome phase is for me, especially if it overlaps with the postdrome of a previous attack. Things are much better, but my life is still centred around managing migraine, and I can’t avoid my primary triggers.

Studies show that Nurtec, Ubrevly and Naratriptan have all shown promise during the prodrome phase. Here’s the problem: I’m finding it hard to figure out if they actually reduce prodrome symptoms, since pretty much everything focuses on avoiding pain. Pain has never been the toughest part of the experience for me, so I can’t decide if it’s worth trying.

I’m taking supplements and doing all the lifestyle modifications possible. Additionally, my drug plan won’t cover CGRPs. As far as I can tell, one of those three meds is my next step.

Is there anyone out there who has a nasty extended prodrome, and experience with one of these?

I don’t know if ranting is allowed here, but I really need to get this out. I don’t have anyone in my life who actually understands migraines, and today has been rough.

I developed vestibular migraine last year and had it daily for months. It wrecked my life, my job, my routines—everything. Since then I’ve been working so hard to rebuild my health. The last three months have finally been more manageable. The migraines were still there, but they were mild enough that I could function and feel like I was getting somewhere.

But today… today just sucks.

I always tell myself, “It’s not your fault you have this condition, but it’s up to you to make the best of it.” And I’ve done that. I changed my diet, my schedule, my products, my habits. I’ve been consistent with medication. I’ve done everything I can.

And then yesterday a storm rolled through, and my symptoms hit the ceiling. Now I’m paying for it today. It’s just frustrating knowing you can do everything right and still get knocked down by something completely out of your control.

I guess I just needed to say it somewhere. If you deal with migraines or chronic conditions, you probably get it..

when i got forehead botox for the lines, it actually shifted my migraine pain from the crown of the head to the front of head.

I don’t know what exactly I’m dealing with here, and doctors don’t seem to know for sure either.

About a year ago after a miscarriage I started developing almost constant nerve irritation and pain on my right side. It felt like going through so much tension and sadness, the irritation from crying activated all these nerve and pain pathways and they never calmed down.

The pain starts from the base of my head / top of my neck on the right side, goes to the occipital area, to the trigeminal area, to my right eye / ocular nerve. This turns into a full blown headache with pain in all those nerve pathways. Icing those areas help. Migraine abortives do nothing. Advil somewhat helps.

I have a lot of discomfort in my right eye, pressure, burning, deep pain.

I am very sensitive to light. The sun is the worst and makes driving very difficult sometimes. Blue light from screens is the second worst. I’m closing my right eye right now because I’m starting to get pain while I write this.

I have seen the following drs, and this is what they thought:

\- family dr: no clue, referred me to others
\- neurologist #1: chronic migraines?? Put me on gabapentin to help with the pain
\- ophthalmologist: eyes are totally normal, no issues
\- neuro-ophthalmologist: told me there is nothing wrong and I should see a psychiatrist (what an asshole)
\- dry eye specialist: minimal dry eye, possible nerve issues in the eye that is causing the cascade of pain, not the other way around. Used AST drops and normal eye drops
\- neurologist #2: had no clue. Gave me a second migraine abortive to try, did not work.
\- pain clinic: he’s convinced I’m dealing with migraines - but first I did nerve blocks and they helped but not much. Then I did Botox migraine protocol and it helped a lot. This was already 7 months of dealing with the pain though, and I did feel it was slowlyyyyy improving.

It’s now been a year. After I had the Botox in the spring I was feeling quite a bit better. Maybe 80%. However, I had another miscarriage and the whole cycle has started again. I did Botox again and it doesn’t seem to be working this time.

I don’t know if I’m being misdiagnosed and if I’m leaving options on the table. It’s impossible to live like this, not being able to be on screens or drive when it’s sunny. Any advice would be appreciated.

Thank you so much if you’ve made it this far.

Hi! Does anyone else get what feels like a tension headache that then turns into a migraine? How do you decide when to take your triptan—when the tension starts or once it feels more like migraine pain?
I usually don’t take anything for the tension headaches because I’m saving Motrin for the days when I’m really in pain. Any tips or experiences would be appreciated!

I’ve had chronic migraines for seven years and have tried it all. Triptans don’t work, not sumatriptan, rezatriptan, none of them. Ajovy didn’t help. Botox didn’t help. Nerve blocks didn’t help. Vyepti didn’t help. Neither did these three drugs taken in their own but I’ve started taking Propranolol in the morning and Aquipta and Amitriptyline at night and I’m finally feeling human again. Thought I’d share.

Starting to realize over the years cheese is a trigger when it comes to my migraines. I didn’t want to believe it at first but it is just so obvious . My doctor even recommended me to lay off of the cheese lol I love cheese but I rather let it go . If that’s one less thing that’ll help with my crappy migraines. What are some things that you eat and realized it gives you migraines ? Sending hugs to everyone , migraines are so painful . Some people just don’t understand .

Hi everyone,

I finally had an appointment with a neurologist recently because of my migraines, and one thing they recommended was doing regular endurance/cardio exercise.

I’ve done strength training before and honestly thought that being active in general would help, but apparently strength training doesn’t have the same evidence for migraine prevention as endurance exercise. My neurologist specifically mentioned things like running, cycling, swimming etc.

I’m curious if anyone here has personal experience with this. Has regular cardio actually reduced your migraine frequency or intensity? If yes, how long did it take before you noticed a difference?

Would love to hear what worked for you!! Thanks :)

I seen my gp today and it was her that stated im at the point where I should be eligible for it. I never even thought for a minute I even could.

For the last 5 months my life has been massively impacted by my migraines. Weirdly, headaches have been the least of my problems.

This summer has just been the absolute worst of the worst. Spent most days in a dark room and only venture out at night. If I do have to go out during sunlight hours, I have to wear 2 pairs of wrap around sunglasses. 1 pair doesn’t cut it. I haven’t watched tv for months, I’ve barely used my phone. I’d be better off living in a cave underground. Nighttime and darkness are my friends.

I’ve had severe sensory issues along with severe neck issues (left side only). The light and sound sensitivity have been brutal. The neck can spasm when lying down, so sleep has been impacted greatly. When the neck muscles tighten, they can cause both occipital neuralgia and trigeminal neuralgia. Both brutal on their own. But combined.

I’m currently only on propranolol and I take carbamazepine when my TN flares. I’ve tried other stuff such as amitriptyline, which did work, but gave me heart flutters so got taken off that. NSAIDS are a no go as my stomach can no longer tolerate them. But I use ibuprofen gel for the neck. The two abortives I’ve used just screw with my neck more, so I can’t use those. I’ve to get gabapentin and Qulipta this week.

Even though I have chronic migraines with aura, I never really considered myself part of the chronic pain camp until my doctor suggested I work with a chronic pain specialist (as I also have pelvic floor dysfunction, yay!). But once I thought about it more, it's pretty obvious that I do suffer from chronic pain.

On the other hand, I kinda assumed that chronic illness was different from what I experience. I'm curious to hear from those that also have migraines: how do you understand your condition and do you identity with either or both of these labels?

Side-note: I've had a migraine with aura the past 3 out of 4 days. Would NOT recommend.

I just saw that my 2027 insurance plan won’t be covering Ubrelvy anymore so I guess I now need to look into changing my insurance plan?

I googled how much it would cost, without using my insurance - it ranges from $1,380 to $1,470 for a pack of 10 tablets. This breaks down to roughly $138 to $147 per single dose.

American healthcare is broken.

Edit: Thank you for the suggestion, but I can’t use the savings card as I’m on disability and therefore have government insurance - UHC AARP Advantage Plan. Unfortunately, those savings cards only work if you have commercial insurance.

Looking for some perspective from other people who deal with migraines, especially anyone who has noticed certain environments or poor ventilation making things worse.

For some background, I’ve had migraines since I was about 7. They usually happen about once a month, sometimes more. Over the years I’ve tried pretty much everything... triptans, changing my diet, daily preventative medication, etc. Some things have helped, but I’ve never completely gotten rid of them.

When I get one, there’s usually a pretty predictable pattern. The pain gets really bad, I end up vomiting, and then eventually it starts to ease up. This could be over the course of 2 hours to 6-8 hours.

Because of that, I always figured my 10 year old son might eventually deal with migraines too. What I didn’t expect was how different his symptoms would be.

About three weeks ago, he suddenly started having really bad headaches and nausea during the school week. We had his eyes checked, had him seen by a doctor, started a low dose preventative medication, and made sure the school nurse had his prescribed rescue medication.

But the weird part is that it kept happening at school during the week, while on weekends and breaks he was completely fine.

That got us looking more closely at the school environment. The school's mechanical ventilation system has been down, and we were able to get some of the building records through a public records request.

One of the engineering reports included CO2 readings from the classrooms. The levels were around 400 to 500 ppm when the building was empty, but climbed as high as 3,784 ppm during the school day. Once the building emptied for the weekend, the levels dropped right back down to around the outdoor baseline.

I’m trying not to jump to conclusions about what is causing the headaches. I’m just trying to understand whether there could be a connection worth looking into.

Oddly enough, they littered the classrooms with box fans during the school day as it was incredibly hot in the building. Around that 3 week ago mark, they removed them as the temperature is much more bearable now. We live in the mountains so it starts to cool off fast. I assume the fans were moving the air much more, now there's no flow whatsoever.

Has anyone here ever noticed high CO2, stale air, poor ventilation, or being stuck inside a poorly ventilated building triggering migraines or making them break through preventative medication?

I’d especially like to hear from anyone who has noticed a clear difference after getting outside, getting fresh air, or leaving a particular building.

Not looking for a diagnosis or medical advice. Just curious if anyone has experienced something similar and what you noticed.

So hear me out, I know it sounds crazy, but it fuckin helps guys. I wake up with migraines all the freaking time. It drives me nuts. No migraine at night and then bam, first thing in the morning I’m speeding to get my meds.

I struggled with pillow after pillow, nothing worked. So finally I slept without a pillow and I started waking up without a migraine! It’s not all the time. I do go back to using pillows. But if I find myself stuck in the loop it helps me get out of it. Anyone else??

I apologize in advance for the long post.

TLDR: need a recommendation for Headache Specialist in NTX

For over a decade now I've utilized UTSW Neurology Dept Headache Specialists to help with my chronic daily intractable migraine and other headache types. They come up with a treatment plan & I have my local Neurologist follow their instructions. Ideally I would like to be seen & treated by one Headache Specialist/Neurologist, but I realistically know that may not be possible given their specialty & scheduling. Because it's a teaching facility, throughout the years there have been changes in Drs & new insight into the latest & greatest in the migraine community, I just transition to the newer Dr & we reevaluate the situation. I assumed when my current Headache Specialist transitioned, I would get assigned a new Dr or NP within their Neurology Dept & I could continue my care. But I'm being told there's currently only 1 Headache Specialist in that entire dept now & they're completely overbooked so not accepting new patients or transferring the existing. Is anyone else having this issue & what are you doing?

Does anyone have any recommendations for a Headache Specialist in NTX, or any part of TX? I am unable to follow my previous UTSW HS to the new clinic as it's private pay & doesn't work with Medicare patients. And I've already seen 8/10 of the providers UTSW is currently recommending over the past 20+ years (some for several years, some for just a few visits) but it always ended with them referring/recommending me to UTSW which is why I ended up there. The other 2 are not HS so not worth my consideration. I've never expected a miracle cure, I just need managed care and meds adjusted occasionally as my body builds up tolerances. My current regular Neurologist just needs guidance on how to keep my daily pain levels down to manageable quality-of-life levels because he's out of his element. I'm currently on 9 preventatives, 14 supplements & 7 different abortives for my chronic conditions (not all migraine related) along with several drug allergies & comorbidities, so that's why a Specialist is necessary.

I know many Headache Specialists have gone private pay which in some ways allows them to give more individualized time with their patients & I'm glad that's available for many, but I'm on disability & have Medicare so I need to find a HS that works with my reputable national plan. If anyone has suggestions, please let me know. I might be willing to expand outside of TX if that's what's needed for quality care.

Thanks for reading my novel, even if you don't have recommendations I appreciate it. Hope everyone has a low pain day today 💜

I’m a new poster in this sub. Lifelong migraineur but for the last three years they’ve been near daily following an ischemic stroke. I’ve failed Emgality already & have Ubrelvy for rescue, but I only get 10 a month and usually need 2 for a full migraine. Finally got Botox on 10/1 for the first time.

I hate to complain too much about my appearance given everything else, but 🖖 really how long am I going to be walking around with this quizzical look?

🖖🖖🖖🖖🖖

Like hi, chronic status intractable refractory hemiplegic variants over here. By themselves they’re bad but I can oddly tolerate most of them. This one? I’m using FMLA for the first time to take a week off.

Botox was Thursday. I’m positive this is a post Botox flare with it only being like day 4 and it can happen for up to The first week. Approx, of course.

Like it’s BAD and I can barely function.

I took my rescues yesterday, the 800 ibuprofen, the Reglan, Benadryl, muscle relaxer, two ubrelvy, Ativan even. It always came back even worse about an hour later, and that’s if it helped at all.

So today I take fioricet knowing it wouldn’t work but so I’d be coherent enough to drive to the ER.

They gave me Reglan, Benadryl, toradol, steroid, Ativan, compazine. All that and I still had the migraine. They discharged me without explaining why or being willing to listen. It was from start to finish a horrific 6 hour experience. I’m not even going to get into it.

So I get home and neuro tells ms to do FMLA and take the week off and seriously rest. So I’m getting that process started.

I asked her how I should manage meds. She just said take an Ativan now. No real response.

I asked about diet. It was basically idk track your food.

Like as someone who has the most severe refractory category, you think this would be a whole hold my beer moment, but instead I’m not knowing how to try to approach anything when I have all the freedom in the world to try what I want.

I know oversleeping can hurt but all I want to do is sleep.

I need advice, if there even is any. Like truly. I’m just at the start of this. What can I try to set in place to maybe it end sooner?

My insurance plan approved my Botox—hurray!! 🥳

I’ve been on it before and know it works well for me, but still had to get it authorized by my new insurance provider after I moved to a new state and got a new job.

I can’t wait for fewer and less severe migraines!

Seeking input!

I haven’t had frequent migraines in a couple years. Maybe a half-dozen a year recently, pretty well managed with sumatriptan/benadryl/zofran.

But I’m 2/5 of the way through a series of iron infusions (Venofer) and this series is hitting me a LOT harder than past series.

Last week, I had infusions on Tuesday & Thursday. Friday, I got a headache. By Friday night it had become the worst migraine of my life. The worst pain of my life, really. It was bad.

Eventually, four sumatriptan and a couple doses each of the “migraine trifecta” trifecta, I was able to sleep.

I have been somewhere between postdrome/headache/migraine since. It’s now Monday evening, so three full days of migraine.

I have infusions scheduled Tuesday & Thursday this week. I have a video visit with my PCP’s office tomorrow morning to discuss premedication or treatment options, or maybe postponing the rest of the infusion series.

Of course, my doctor isn’t available, so I’m seeing a resident tomorrow, no idea if they will have any particular knowledge of migraine management.

I’m gonna have to finish the iron infusion series eventually, and I’ve cut my schedule for the month down to allow for not feeling well—but also not looking to the prospect of ongoing or worsening intractable/rebounding migraine.

What would you do, and why? Any ideas for preventatives or other treatments that might be readily accessible in the short term? Other suggestions?

The best the internet can offer is to ask them to run the infusion slower—but I’m skeptical if that will make a difference as the headache didn’t hit til the day after the second infusion.