Hey! I just found you guys, and my migraines are literally ruining my life. Most people think migraines are just pains. Those that do have them can actually function relatively well. I DEPEND on my medication to get out of bed pretty much as they become more frequent. Needless to say, I need all of the help I can get.
One trigger I have always noticed and pinned down is smells. Just smells in general, but especially stuff like perfume, body spray, air freshers, cleaning chemicals, and anything that has a strong artificial scent. I know what scents don’t trigger migraines and latch onto these as if my life depended on it for things like body wash, soap, laundry detergent, dish soap, and everything else.
Strong smells trigger migraines, but it’s an instant trigger. It’s not like I can walk into a store with the smell, say, “Shit, I gotta avoid this.” Get out and be okay. Recently I walked into a hall where someone must have sprayed perfume. I knew immediately to GTFO, and so I did. I covered my nose and ran out. The thing is, it still triggered a migraine. One wiff. One smell. One second.
This is BEYOND frustrating. I take my medicine often. It’s usually how I get through the day. However, I can only take it every 6 hours. So if I take it, it works, and two hours later I walk into that room with the smell unknowingly, only to smell it and a migraine comes on, I’m SOL for a few more hours.
Any migraine sufferers that can help? Any advice? You can’t avoid unapologetic people that wear far too much perfume or spray perfume in common areas where other people have to walk through. It just happens. It’ll come on no matter how fast I get out. Does anyone else have this problem?
Oh, thank you so much DonnaFA! I recently kinda got fed up with my migraines, searched this site for migraine specialists, and found the best one possible to call and schedule an appointment. Bad news it’s in 5 months. Good news and they are semi-local and GOOD! So it’s nice to have a preventive strategy for the one known trigger that I can’t avoid.
Also, thank you Lisa Robin for your concern. I understand there is a lot of concern within the migraine community. There’s a lot of risks for migraine sufferers. I have only really visited my primary care for my migraines thus far. As I’ve said, I’ve had them since I was ten, but in a weird cycle. Had them for a few years, they went away for a few years, back a few years, gone again a few more years, and now they’re back again. Like the friend that keeps nagging you even though you don’t really want to talk to them.
My primary issue with getting help this far is circumstance, honestly. First time I was taking regular pain medication as I was wearing braces, and that dulled a lot of the migraines for me, so I wasn’t aware of how bad they were. Second time around the doctors tried almost everything and just said there’s no known cause or cure for migraines. I literally had two baskets full of medication that didn’t work around this time. Even went to a few psychologists as one doctor said it could be cause by depression? I was going to a few doctors, one that worked at the nearby ER/Urgent Care that I frequented when I lost days of sleep from pain. The others my primary care and his PAs. They all just threw their hands up in the air said they tried everything, and the ER doctor said, “It’s a long shot, but here’s a plan.” It was ultimately taking Fish Oil and Lutein. Hey, I don’t question things that work.
But this time around I’m back on the vitamins (plus one because Fish Oil keeps Magnesium in the system, and I know my magnesium gets low often so I was hoping that would help). Thankfully now there’s a lot more information out there on migraines than there were years ago, but I never really went to a specialist about my issue. My primary care only offered seizure medicines (a common preventative), but I can’t take it because the side effects make it impossible for me to function. I know they wear off in a few days, but I don’t have a few days at this point in my life. In a few months I plan to make time, but right now, I just can’t.
Trust me, I hate taking my medicine this often as much as anyone. Health risks aside, I can’t function any better on this pain medication than I could with a migraine. The only difference is I’m not functioning out in public rather than in bed crying puking whatever I ate. Not a pretty picture, but before I got this abortive medication I was actually losing weight because I couldn’t hold down food for 48 hours while I had the migraine. Back then they were only once a month, but they got worst far too quickly, and now are several times a week. The only preventative I have is a chiropractor to adjust my neck, which gives me relief for like 3 days.
Ultimately, I’m screwed. Which is why I’m going to pretty much the best specialist I could find on my insurance plan. Gotta wait it out for a few months or hope I jump to the front of the waiting list to get in early! Fingers crossed! Until then, I really wish that I could take a preventative. However, as I’ve said. With past experience, I just cling to the first thing that works. I’m sure your understand better than the migraine sufferers I’ve met. Most people that have migraines get them every once in a while, so people aren’t quite so understanding of me having to miss large amounts of time for anything because of migraines. Frankly speaking, as uncommon as migraines are, chronic ones are even less common.
Thank you both! You were both a huge help! Hopefully this doctor can help me get this sorted out. While I wait, I’ll just stick with what I have.
Sorry to hear you are going through this! I, too, fall victim to the scent-triggered migraine, though I am usually okay with perfumes and have more problems with cleaning products, which makes things a bit easier. I have experienced that smell triggers can often be quite instant as well.
In addition to the article DonnaFA posted above, I wanted to bring up another point, which is medication. I am assuming the medication you are taking every day is some type of abortive medication. That is, you take it to STOP an attack. Types of abortive medications include triptans (like imitrex, maxalt, etc), NSAIDS (advil, aleve…) and others.
These are meant to be taken on occasion and not every day as there is a risk for rebound medication overuse headache.
Have you talked to your doctor and have tried or are currently trying a preventive medication for your migraine? It can take trial and error to find something that helps, but if you do you can often be less sensitive to triggers than you once were, and can reduce the frequency of your migraine attacks. If you are having migraines frequently I definitely would bring this up with your doctor if you haven’t already.
Thanks for sharing some more of your story. It’s always helpful to know more of the context. I think it’s great that you’ve sought out some alternative therapies, like the vitamins and chiro, even if the relief is only temporary. I also understand needing the medicine to function, and not wanting to lose time due to the side effects of trying a new medicine. When I was finishing grad school I was facing similar issues with chronic migraine (and since it was an art school there was no end to noises, smells, and other triggers around me every day!). Under the supervision of my doctor as I was lucky enough to have lived in an urban area with a choice of headache specialists, I was able to temporarily take my abortive more often than normal to help me get through school while trying to find a preventive to work, which as you know can be trial and error (and often more error than trial!). I also at one point asked him, please no more med changes until I graduate, because as you mentioned I would lose precious days I did not have to adjusting to the side effects.
I hope you are able to see the specialist soon and that he/she is of help. Just a note, often they are able to fit you in when there is a cancellation so I hope you can see the specialist sooner. But know we are hear for support and information while you are waiting.
One last thing I wanted to mention is that migraines often come in cycles, like you’ve experienced. I speak to many people who hit a rough patch, then get better, and hit a rough patch again. The hope is, once you establish treatment that is effective for you, that you will have options for the next rough patch if it ever were to occur again. For example, I received Botox for a few years and stopped last year, but that is something I could try again if I became chronic again.
Feel free to reach out any time, and we certainly understand.
Oh, so cycles are normal? Well, that’s something to look forward to, I suppose. Kind of difficult to justify the need for disability (which I am considering) when you may have years with nothing wrong, but what can we do? I’d love to never have a migraine if I could.
Also, update in the smell triggers. So I’m taking college classes, and I’ve had a good thing happen. I was a leader in my group and one of my friends was concerned. They took on the leadership role because she found out I have stress triggered migraines (darn you FB). But I’ve felt much better today since that happened.
Now really onto stress triggers. One of my classes next semester is in a wing that does wood and metal work. If I know one thing, the preservatives or whatever that they use on metals is a migraine trigger. So, you can see where this is going. Going to a classroom twice a week that is a migraine trigger. That takes guts, man. So I’m looking into some of the solutions for scent triggered migraines. That charcoal mask idea seems the most promising considering the potency of the scent. I’ll consult the doctor if I get in before next semester. Otherwise I’ll consult family and see what they think of the idea.
Though everyone is different and our migraine patterns can change, it definitely isn’t unusual for migraines to come in cycles. It can be weeks, months or years, depending on the person. This article explains it a little more: https://migraine.com/blog/migraine-roller-coaster/ That being said, migraine is a chronic disease and if it is interfering with your ability to function to a certain extent, it is completely reasonable to consider disability. If that is something you are looking into, we can help provide some resources on that.
It’s great to hear about your friend’s support. And you’re right, it takes guts to go into a situation regularly that you know is a trigger! I personally haven’t tried the charcoal mask, maybe some other members of the community will weigh in, but basically no matter what others say, it comes down to what helps you, so I always say pretty much anything is worth a try.
I think you may suffer from this part of migraine worse than me, but I have it too. Yes, people with too much cologne or perfume on is horrible & a sure migraine starter. What is wrong with these people?! I mean, a little of that stuff goes a LONG way! I swear, some people seem to leave a vapor trail behind them, they have it on so strong that, even after they have left the immediate vicinity, you can still smell them for ages! UGH!!
Other things that will trigger me, that are more “natural”, but no less pungent, are smoke & skunk. I have found that peppermint, if taken quickly enough, MAY help to distract my olfactory perception enough to avoid or reduce the severity of headache. Notice the capital letters in MAY. It’s not perfect, but sometimes it helps. So I keep hard peppermint candy in my purse at all times, just in case.
I know this thread is old but smells and especially cigarette smoke are triggers for my migraines as well. My husband also has a sensitivity to cigarette smoke, which gives him a headache. We love to travel and we discovered after arriving that one of the destinations we were going to had a lot of smokers. I ended up catching a cold from the plane ride and to this day am thankful for that cold. It stuffed my nose up and I couldn’t smell a thing, while my husband was trying to get my cold so he wouldn’t have to suffer the constant headaches. We laugh at the idea that we are probably the only two people wishing to catch colds on the way to certain travel destinations.
Just be careful where you travel. Japan has been the worst so far for cigarette smoke. It seemed like the vast majority of people smoked and most did it in restaurants and on the streets as well. Luckily, masks are pretty popular there so I never felt out of place wearing them. My favorite were not the popular rectangular one but the one that is more fitted. They were tight to your cheeks and had metal wire on the nose portion so you could sculpt it to your nose. Otherwise, smells got in from around your nose and certain parts of the face. And beware, some are scented with a chemical smelling under-scent. I wouldn’t say the masks were fool-proof but they let you get a little closer to your trigger smell without a migraine. Also in Japan, search hotel reviews for smoke. Many hotels will say they are smoke free but the rooms will still smell of smoke.
This is exactly me. ONE whiff… instant migraine. It’s perfumes, air freshners, cleaning products particularly bleach… and recently a certain soup being cooked. It’s so limiting my life right now it’s ridiculous.
I have this too and am beyond frustrated that no one takes it seriously. It is so hard and it really highlights how selfish people can be when they know about it and continue to wear the offending – chemicals – yes chemicals. Not healthy for them either.
I saw someone saw they carry peppermint candy with them. I carry peppermint essential oil with me. As soon as I hit a cloud of “deadly scent” I open the bottle and put it right under my nose, because it is strong it usually over powers the offensive scent. I will also dab some on my wrists and temples to keep the peppermint with me. It’s a life saver!
I carry a high quality cotton surgical face mask that is impregnated with silver on me. I wear it frequently. It is washable and durable. If people question me I say I have asthma and the mask helps. I do have asthma and reducing dust,,chemicals etc does reduce attacks. But I also wear the mask because strong synthentic odors are a migraine trigger and the mask helps reduce exposure to these triggers. The asthma excuse is more quickly understood and accepted by the public who just want to be assured I am not contagious. I also have cute and fun masks, but have less occassions for wearing these. I also almost always wear a scarf and can quickly cover my mouth and nose if needed. Both masks and scarves can be dabbed with essential oils that I find theraputic. Japanese retailers are expexpensive sources for high quality and fashionable (for all genders) masks.
Faeriefate described my triggers exactly. I work for a governmental agency, and after NINE years, an ADA request with letters from my doctors, etc., I was able to get a “Scent-Related Workplace Guidelines” issued, that urges us to have a “scent-sensitive” workplace. There are no teeth to it.
There is one particular co-worker who has not changed her behavior (perfume bomb) at all. I usually hold my breath when I walk down the hallway where her office is located, but I got distracted on Tuesday by what I was reading and forgot. BOOM! Immediate migraine requiring dark room and lying down on floor. Five hours later, my husband drove 1.5 hours to pick me up. Luckily, I didn’t vomit until we got home 1.5 hours later. Yesterday, still had migraine, but could semi-work. Today, same thing.
I’m ready to sue or at the least get my lawyer involved. I’ve been a good sport too long.
Is it possible to talk politely and privately with the heavily perfumed person? Or with a third party mediator (a supervisor, someone from HR?)
It may be this individual either does not realize the perfume is in violation of the guidelines (some people are “nose blind” and what smells heavy to us smells faint to them), somehow the guidelines did not get to her, or does not understand the importance of the guidelines.
If you cannot (because of the scent) or do not want (for any reason) to talk directly with the befumed, do ask HR to speak to her and impress the importance of the scent guidelines.
Another diplomatic step before consulting a lawyer is to speak with someone at a regional legal aid office. At no charge, they can help you draft a letter requesting adherance to the guidelines and stating that continued failed compliance will lead to mediation or litigation.
This enables you to say “I have consulted legal council” (when often motivates compliance) while avoiding the leap to litigation.
Document enlverything! Keep a small notebook in your pocket. Datesof encountering hazardous perfume, effect on your health, steps taken by you to allieviate the situation, your requests for accommodation, steps taken by or failed to be taken by the individual and company, etc.
After 9 yrs, you likely know this drill. I’ve typed it up as a potential help for others also.
Should a polite meeting or formal letter fail, do file formal complaints with HR, should you pursue litigation or be forced to take medical leave or resign, you will have a well-documented trail to protect your medical and or financial claims.
There is a fine line being a “good sport” and perpetuating harm to oneself.
I have multiple “invisible” disabilities. The years I spent being a good sport, minimizing or hiding my needs only lead to exaccerbating and worsening of my conditions. Besides that I lacked integrity, saying “I’m fine” when I was ill. People could often tell and would “fill in the blank” with misinformation: deciding I was a narcissit, snob, angry, a misanthrope, anti-social, or worse.
This continual masking also robbed kind people of the opportunity to help me and me of that help.
And the masking further isolates all of us with hidden disabilities from one another. Robbing us of comraderie and strength of numbers.
Everyone suffers in someway even if it is outside the realm of ADA protection.
I have found that when I am honest, yet polite and as graceful as possible, about my conditions and the accommodations that I need, the world rises to the occassion.
Sure some people stay rude, mean, and uncompassionate.
Yet, most people rise. Most people say “Oh, I did not know. I care. How can I help?” And just that helps my mood and spirit even as I remain disabled.
In being my own best advocate, I find people become my allies, both the able bodied, kind people happy to and glad of the opportunity to help (just as I find joy when I can help another) and my fellow Invisibles.
It’s our super power. Making our invisibility visible.
I encourage us all to always speak up for ourselves. And solicite at least one trusted person to speak for you when the migraine (or whatever) keeps you from being able to speak for yourself.
You, too, may find this first step, speaking up, seeds the field for a vast forrest of allies to sprout.