A Letter – Fragrance Can be Dangerous for Migraine Patients

Dear fragrance-lover,

You are receiving this note because someone you know, thinks you’re important enough that they want you to understand the potential health implications of personal and environmental fragrance.

Most people don’t know that Migraine is the seventh leading cause of disability throughout the world. In fact, approximately 12% of the general population has Migraine, and a large portion of them have attacks that are triggered by fragrance. Most people also don’t understand that many patients spend thousands of dollars preventing and treating their Migraines each year, and that Migraine can sometimes even be fatal when those powerful medications fail.

Fragrance feels personal because it is something you specially choose and put on your body, or spread throughout your personal areas including your workspace. However, fragrance, like cigarette smoke, becomes a part of the environment we all share.

Migraine patients who are triggered by fragrance are frequently misunderstood and stigmatized by what the outside world sees as a frivolous or even silly problem – the need for clean air. As a patient educator and advocate, this is a top public and workplace problem that is mentioned nearly every day by someone I’m in touch with. I want patients who have suffered in silence, and those who have tried in vain to get their bosses, workplace companions and others, to take the problem seriously. Patients often need to have a new, unique way to be understood. So…

I want to tell you a short story that was in the Express news this week:

Once upon a time, there was a young boy named Glynn who, at the age of 14 began to suffer Migraine attacks. Eventually his attacks began to include some scary symptoms including the loss of the ability to communicate, as well as paralysis of arms and legs. He knows his attacks could cause permanent damage, including stroke and death. This 36 year old father of three has removed the triggers over which he has control, however there is another – his most serious trigger – that he can’t control. Fragrance. In fact, his wife’s Chanel No.5 triggers attacks that now literally drop him to the ground, unable to move. His wife no longer wears fragrance nor does she use obviously scented shampoo and personal care products. This makes life at home easier for Glynn, but because of his inability to stay away from fragrances when he’s away from home, he is now unable to work. Glynn’s attacks leave him unable to remember how to use everyday tools like a spoon, and may have caused brain changes that are irreparable.1

We all love things that smell good, but is a few moments of pleasurable scent for you really worth the damage that happens to others?

This isn’t a problem with just a single person. Migraines triggered by fragrance are so common, the American Headache and Migraine Association has created a fragrance free area for their national conference this November. This move was inspired by an experience at another conference in June in which all the board members present were triggered by the smell of a single woman mingling about, who no doubt thought her fragrance was lovely. Two miserable days later, it was clear Migraineurs needed a safe haven at their meeting.

I wanted to be the one to tell you about Migraine and fragrance, and the person who has given you this note is very sensitive to your feelings. They may not have even mentioned this serious problem to you in the past. Please understand our intent is not to hurt anyone’s feelings, but simply to be able to be a present and productive member of society without putting ourselves in danger of a disabling, or possibly life-changing Migraine attack.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
Disley, Jan."'I'm left senseless by my wife's scent': The man floored by strong smells". Express. Published November 5, 2013. Available at: http://www.express.co.uk/news/health/441151/I-m-left-senseless-by-my-wife-s-scent-The-man-floored-by-strong-smells

Comments

View Comments (31)
  • Luna
    5 years ago

    Scents, odors, smells, chemical odors, rubber, plastic, traffic fumes, any and all smells except most food bothers me. It gets to my brain as long as I am in the same air. If it doesn’t cause the painful migraine it causes muddled brain, light sensitivity, and other silent symptoms. When I get home from anywhere the clothes I had on go outdoors to air out. Have to wash my face and often my hair and rinse with acv. Quit going to church because of new carpet. Very few people understand how little it takes to be toxic air to me.

  • onehsancare
    5 years ago

    Perfume is my worst trigger. I’ll save the story for my so far unsuccessful battle for a fragrance-free office for another time.

    I started wearing a mask to fly about four years ago, and now it’s gotten so I wear it any time I’m out in public. It’s certainly not flattering, but I’m frequently asked about it, often by people who need it as much as I do. When it’s just someone being curious, I feel like I’m doing my part to educate the rest of the world about the effect of the neurotoxins they wear so blithely! I will squat down and take it off to show children what it is before they ask if they appear to be put off by it–it’s really not chic at all!

    The mask is black neoprene with “Dynamic ACC (Activated Charcoal Cloth) filter and HEPA filtration”. If you google that phrase, you can find the mask and where I buy it. It’s not cheap, but it keeps out ALL perfume. Cigarette smoke still gets through, but flower scents and diesel don’t.

    YMMV, but the masks are worth every penny to me. I’m afraid I’d almost be house-bound without them.

  • Jan Piller
    5 years ago

    Not just fragrance,but many seasonal aerosols as well… insect repellent is a huge one for me, spray-on sun block and the lawn and garden herbicides and pesticides people spray on their lawns – it all wafts over to me. It singles me out like tiny little molecules with brains!Even my husband has to be very careful using his spicy peanut sauce. If he’s using it on his food, I have to leave the room. I tried just moving to the end of the dining table but even that wasn’t good enough.

  • Hope
    5 years ago

    I also am very smell sensitive. When I walk into work there are two ladies who I try to scoot by because of their scent. Sadly it is enough to make me instantly nauseous. I have spoken to another woman who I know is refreshing her scent, Eternity, mid day, but it does not seem to matter. My head pulses and I have to medicate and attempt to survive through my work day, then get in the car when my husband picks me up and sob. I will say my boss has removed several light bulbs so my desk area is darker. I think people think it is just drama, but it is so real. It was good to read the article.

  • Beverly Militello
    5 years ago

    I can’t go down the detergent aisle’s at the grocery stores or near the fragrance’s in any stores. It took me years to convince my family and friends to not wear any form of fragrances. I still have trouble convincing my family to not use scented laundry detergent or fabric softener. I’m a practicing Catholic but can no longer go to Mass because of all the perfume and I never know when my Priest is going to us Incense 🙁
    I wish they understood how bad fragrances affect Migraine suffer’s.

  • 5 years ago

    When I could work, hairspray used by someone passing in the aisle outside my cubicle was enough. Now a trip to my Doctor’s office at the hospital and the corresponding perfumes and smokers ratchets my headache. Christmas, candle, and detergent aisles are places I send others. New asphalt and paint are agony.
    I have found however that by sending an email to the management of a restaurant and making them aware of the problem in their staff, it gets corrected. The same cannot be said for stores.

  • TheKimberly75
    5 years ago

    Ellen, I wanted to say that I loved your post as fragrance is my number one trigger – and the fastest! You acknowledge being chronic since the mid ’90’s; does anything work for you? I have virtually tried Everything, in every dose, at least twice!! That goes for treatments also. I’m going on my third decade as chronic and am on my last nerve! Coupled with depression, I am not a very happy camper these days!

  • Jan Piller
    5 years ago

    Kimberly, I’m also in my 3rd decade. The depression is horrid – I’m in my 2nd bout now. Meditation is the only thing that works for my depression. I took Cipralex for that but I think the meditation was more effective. It takes a lot of practice and commitment but it’s soooo worth it.

  • TheKimberly75
    5 years ago

    My worst story was when I started with a group therapy session already in progress (I’d had to register with intake I was a bit late to my first session). Someone was speaking when I entered and as they didn’t pause to introduce me, I settled in quietly when I was suddenly struck in the face by several scents contained in a basket of perfumed lotions sitting in the very center of the group; apparently an attempt at aromatherapy. As I already had a migraine I was really worried it would escalate quickly if I couldn’t get rid of the offending odors! The speaker went on for some time but I felt as a newcomer it would be rude of me to interrupt so I waited as long as I possibly could and when they were done I jumped right in to introduce myself and state my case – as politely and contritely as possible – for removing the lotions from the small room. Much to my surprise the therapist found me rude and thought I did not have the right to deny the others their moment of joy with the lotions as it made them feel good. I did my best to explain that this was not a matter of preference but one of medical necessity but I received a very cold reception, to say the least. I ended up stuffing my nose with Kleenex (lovely!) and staying behind when the session was over to have words with the therapist and try again to get her to understand my predicament. She didn’t. I left the group.
    I still have a hard time believing not one of those people could extend themselves to try and understand! Not one!

  • Jan Piller
    5 years ago

    People are callous. I’ve met them myself. And usually they’re your own family. I find strangers to be kinder.

  • Ellen Schnakenberg author
    5 years ago

    TheKimberly75 – Wow. I’m so sorry that happened to you. This shows how important it is for us to help educate the public about these problems. We had some similar issues with my son’s allergies as well. People are very attached to their smelly stuff!

    ~Ellen

  • Randy Sarah
    5 years ago

    I looked at the AHMA conference flier, and it very specifically asks people not to use any fragrance.

  • tucker
    5 years ago

    AXE for men. Now THAT should be banned also. Honestly, I hardly ever find that women are “stinky” so to speak these days. It’s men that don’t know when to stop. I have 2 boys in middle school begging me to buy Axe. They’ll have to move to the other side of the country before I’ll let them get that stuff! And I used to think Old Spice was bad when I was a kid. You just don’t see anyone “trying” out Old Spice in the deodorant aisle.

    The worst thing is that there is a new manager at the grocery store where I always shop and he reeks of cologne/aftershave/whatever men wear. And he always seems to be helping someone, working a register, putting up stock – very admirable that he’s out and about – but goodness, you have to hold your nose when he’s in the vicinity.

  • Ellen Schnakenberg author
    5 years ago

    tucker,

    Oh my, I’m sure some guys need the AXE odors, but I agree… this stuff is air pollution to most of us. Hang in there with the stealth shopping!

    ~Ellen

  • Randy Sarah
    5 years ago

    The AHMA conference, of all places, should be completely fragrance-free (not just have a fragrance free area). I am registered to attend, but I am now having second thoughts. I don’t know the set-up of the conference, but surely there will be times when people intermingle, or have to walk by each other.

  • Randy Sarah
    5 years ago

    Thanks. I did see that. I don’t know why the article said that it was just going to be one area that was fragrance free. And I am going to start carrying around my unscented wet wipes for people who don’t get it. Often when I mention something, people tell me that they are only wearing deodorant. At first I didn’t believe them, but I have discovered that many deodorants are full of fragrance. I even asked a workman coming to my house not to wear that deodorant if that was the fragrance. He continued using it, and I will never use him again.

  • Teri-Robert
    5 years ago

    You’re welcome, Randy. See you there!

  • Ellen Schnakenberg author
    5 years ago

    Hi Randy,

    Yes, the entire conference area is fragrance free, however the rest of the hotel is not. I’m sorry if I wasn’t clear in my meaning in the post. 🙂

    There are some really smelly deodorants and hair products that have hit me really hard too. I don’t know who invented Axe (REALLY sets me off!), but they were obviously NOT Migraine patients! We are hoping that by letting everyone know ahead of time, this will be eliminated.

    Thanks for bringing this up!

    ~Ellen

  • Teri-Robert
    5 years ago

    Randy,

    The AHMA conference has been declared fragrance-free. Since this is the first one, and it’s relatively small, all of the sessions and events of the conference will be in the same two or three rooms. There will be signs on the doors reminding people that the conference is fragrance-free and instructing people to see a conference staff member if they’ve forgotten and worn any type of fragrance. Staffers will have unscented wet wipes for sensitive skin in our pockets. Anyone wearing fragrance will be given those wipes and asked to go outside and remove as much of the fragrance as possible. We’ve been promoting the conference as fragrance-free, and we’ll do all we can to ensure that it is.

    Teri

  • Janet
    5 years ago

    Thank you for this Ellen…when I am blessed with a migraine free day…and they come less and less it seems….I run into that issue whenever I go out. Church…my local Starbucks…it doesn’t matter where…but my husband is used to my sensitive nose and super powers of hearing and smelling ..and we’ve left restaurants..movies…church…because of perfume….it’s so bad sometimes I can’t get it out of my nose…does that sound odd?? I feel like it clings to me. I appreciate this terrific article and will pass it along to those in my family that can “take it”…

    Blessings
    Janet

  • not so joy
    5 years ago

    I have found that the way to clear the lingering effect is to lightly sniff some sea salt.
    It clears the scent palette and if you don’t take too big a sniff or if you waft the scent from the container to your nose it won’t stay with you.
    Good luck!

  • Ellen Schnakenberg author
    5 years ago

    Thank you Janet!

    ~Ellen

  • Louis
    5 years ago

    Daisy,
    In keeping with proper posting etiquette, there is a store on Nantucket that sells natural oils that are alcohol free. One is called Head Ease. It is an aromatherapy that contains peppermint, lavender and chamomile extracts. I have no ties with the store and receive no benefit from this reply other than to help others who suffer with migraine headaches.

  • Luna
    5 years ago

    Aromatherapy is scented. Triggers me just as bad as any other smell/odor.

  • muschampd
    5 years ago

    This is a great letter. I wish that more people knew about how their fragrances affect other people. When I’m around people that are wearing perfume/cologne in a situation that’s unavoidable, like class, I put a little bit of Vicks under my nose to mask the perfume. But, like the peppermint oil mentioned below, this only works for a short period of time. Otherwise, I’ve gotten really good at only breathing through my mouth at the first sniff of perfume.

  • Ellen Schnakenberg author
    5 years ago

    muschampd – I’m really glad that works for you!

    ~Ellen

  • sheepwriter
    5 years ago

    Thanks for this, Ellen….many people don’t have any idea that their use of fragrance is causing serious problems for many of us. For me, there are several few trigger fragrances, and thank goodness I can smell them from quite a distance and remove myself from the situation.

  • Tim Banish
    5 years ago

    Great story Ellen! I wish this letter could be posted anywhere and everywhere! I am one who has to dodge the other way when out in public if I come upon a person who has bathed in their cologne or perfume. Fortunately it doesn’t affect me anything like Glynn. My wife has also had to stop using perfumes and eliminate smells in the products we use.

  • BethBlue
    5 years ago

    Thank you, Ellen! I can’t even walk through the “beauty” (!) section of a department store anymore, and I feel foolish holding my breath. One person standing near me in a crowd can undo my entire day. With the holidays approaching, I wonder how we can resolve this issue with relatives (who practically bathe themselves in fragrance) when they don’t understand Chronic Migraine? 🙁

  • Daisy
    5 years ago

    Ellen, where did you get the pendant of peppermint oil? I would like one of those and would like to give them as gifts to other family members who suffer with fragrance-triggered migraines.

  • Ellen Schnakenberg author
    5 years ago

    BethBlue, Maybe it’s time for a letter? Feel free to print this one, or better yet, use it to inspire your own version for friends and family.

    Personally, I just avoid those beauty sections. That was easier in the day before theylaced them in the entrance to a department store. Now it is so much more difficult to avoid those smells and the odors on the people who have visited that particular section.

    Now I carry around a pretty little glass pendant that contains some peppermint oil which can be temporarily helpful. It will get me through a store, but not longer than a few minutes unfortunately.

    ~Ellen

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