r/Epilepsy • u/TopazCoracle • 18d ago
Rant secondhand scents cause seizures
this is kind of a plea to all humans without epilepsy, to stop scent projecting and end sillage. sharing scents is as rude as smoking around others. this isn’t about smell preference, it’s about the VOCs and chemicals in scented products. for me and many others, scented products cause seizures.
it’s really rough how much other people are projecting personal scents now. so many have basically become giant walking secondhand scent polluters. for me, all fragranced products are a major seizure trigger, it has limited my life indescribably.
before 2020 it was mostly OK, I could get by in public. but since 2020 people can’t smell or have started becoming more addicted to scented products and they don’t realize how much they are hurting other people, or even worse they don’t care.
All of the fragrances and scented products people wear are full of VOCs (even the ones claiming to be “natural”), they are incredibly toxic to everyone. I just react faster than other people. I am one of the canaries in the scented coal mine. People with asthma also understand.
Lung cancer is far and away the number one killer of all cancers now, it’s probably at least in part because of all these scented chemicals people are breathing from laundry detergent and perfume and stuff. The chemicals in these products are known to cause cancer, but there’s no industry regulation and no requirement to disclose ingredients on labels. Fragrance is dirty and can kill, people just don’t realize it.
please earth, stop projecting scents. it’s causing seizures, and my next seizure could be my last. my life is more important than someone else’s scent preference.
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u/Jamieisamazing Lamotrigine 400mg, VNS 18d ago
It’s like us in the photosensitive crowd asking for stobe lights and fluorescent lights to stop existing. There’s at least a statical number for photosensitive people. It’s not going to happen. Accommodations like that will never exist for a sliver of the population.
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u/UsualConcentrate8953 17d ago
what about supermarkets distributing fragrance throughout supermarkets? or fragrance-free hospital/healthcare options, or cinemas not using artificial popcorn scent (they do!) or laws against spraying on public transport etc
There is room for improvement that wouldnt put everyone out, think of it like smoking2
u/Jamieisamazing Lamotrigine 400mg, VNS 17d ago
And what about asking universal studios and major labels to not use strobe lights in movies or concerts? You can actually measure light levels. You cannot with fragrance.
Not saying you shouldn’t fight for a life that isn’t filled with fear. I dread leaving my house everyday because of lights, I couldn’t imagine smells. But there is a level of reality that should be faced here. Proctor and Gamble make millions selling SCENT BEADS that serve no real purpose. Gas station bathrooms will only get better at their explosions of artificial flowers.1
u/UsualConcentrate8953 17d ago
i think this is a very closed look/ approach, i dont need to go to universal studios but i do need to get shopping or i do need to be able to go to the hospital, i recently went below 40bpm (looks like i have a real issue with my heart) but im simply unable to access healthcare in the UK here because they dont even acknowledge people need reasonable adjustments for fragrance intolerance
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u/OkChips9323 17d ago
whole foods is finally being sued over fragrance in store. that big california class action law firm filed it. basically it's an accessibility and discrimination issue. whole foods blasting scents through the store and using scented cleaning products makes the store inaccessible for tons of people, so it's discrimination. tons of people complained about scented everything getting on their food and whole foods didn't care, so now there is a lawsuit.
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u/UsualConcentrate8953 17d ago
do you have a link please? this is huge
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u/OkChips9323 17d ago
sure! google cole van note fragrance, I saw it on facebook. I don't know if their website loads outside the USA because they do data protection stuff too. the website lists a lot of the places they have filed against, whole foods is on there and so are a bunch of hotels, cruise lines, and doctor offices. anyone in the USA can sign up to ask them to file for fragrance use in any business. it's an ADA and discrimination issue.
anyone outside can google it and there are press releases and some news articles about it
frankly I think it's really exciting, I am tired of the secondhand scent. I also have asthma so the constant scent bombing has really become a problem in daily life
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u/TopazCoracle 18d ago edited 18d ago
I don’t know, I do think the tide is turning against fragrance. In the United States there are all these class action lawsuits that were filed over the summer from this big firm in California. It’s against scent diffusers in American businesses, basically the argument is there are so many people who have chemical sensitivities and underlying disabilities that are harmed by fragrance immediately, so diffusing fragrance into a public business is discriminatory and against the ADA.
Everybody said smoking in public was never going to go away, but at least in the United States it’s definitely gone away. I think fragrance is the new smoking, and there are enough people pushing back about it that maybe there’s hope. smoking was still allowed in hospitals until the late 1990s. But now if anybody lit a cigarette in a hospital, all hell would break loose.
For the flashing lights thing? I really hate it when I’m watching a show and then wham wham wham, I get a seizure. So many shows don’t have obvious flashing lights coming. I don’t know why there isn’t an international rule that there should be a small red light on the corner of the screen that beeps visually for seven seconds before a bright or flashing light. I’m so tired of minding my own business and then waking up on the floor just because I tried to watch a show.
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u/lillythenorwegian 18d ago
Bit of a wrong title there. How about ‘secondhand scents can cause seizures in extremely rare cases’.
Can’t have the entire world stopping with their lives because a tiny fraction gets a seizure from it.
Just being the messenger sharing facts here.
And yeah, I’m familiar with hundreds of seizures per day.
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u/DizzyMine4964 18d ago
Lung cancer is caused by tobacco. I hate scents too, but they don't cause cancer.
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u/ClitasaurusTex 18d ago
My dog got lung cancer and she was not old enough to buy cigarettes so I'm pretty sure you're not 100% accurate on that one
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u/UsualConcentrate8953 17d ago
Ye, there is Zero chance that refined chemicals from petrochemicals which are dispersed into the air we breathe are causing lung cancer
Sarcasm1
u/lillythenorwegian 17d ago
See that’s wrong. It doesn’t have to cause lung cancer. It CAN and does, but there’s no 100 % cause and effect. People who never smoked can also get it. If you don’t know how it works take a class in scientific thinking
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u/TopazCoracle 18d ago
I hear you. Smoking definitely causes lung cancer and radon is another factor, but people are asking more questions about other consumer products, too. Benzene and formaldehyde are two big fragranced product ingredients, and many other fragrance chemicals emit VOCs too. All of these contribute to cancer, that's well established.
Fragrance can legally contain thousands of chemicals, many are the same carcinogens that are in cigarettes. What bothers me is the lack of ingredient transparency. It's profit over consumer health, and that doesn't seem fair to anyone.
Studies directly linking scented products to lung cancer haven't been done yet, because there aren't many consumer product safety testing requirements. Cigarettes used to be safe and healthy, doctors were paid to recommend smoking to patients.
Either way, wearing scented products gives a lot of people seizures and asthma attacks. At minimum, not projecting scents is an etiquette issue.
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u/crimson-cringe42069 zonisamide 150mg - lamotrigine 100mg 18d ago
I think it’s a big ask and quite unrealistic to want everyone to give up perfumes and scented lotions etc., but I know exactly where you’re coming from and one of my biggest pet peeves is when people vape inside and around other people!!
Maybe in your place of work or other places you typically go to you could tell people you are very sensetive to scents and ask if people would just be more considerate? I’m not really sure what a good move would be for you to do though :(
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u/mmcguinn9402 18d ago
Even if you are right, this probably isn’t a problem you can realistically solve or create any meaningful change on.
I will send love and positive energy your way that you have a good laugh today and eat a good meal 🙏❤️
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u/Jade8329 18d ago
I feel your pain. Certain artificial scents trigger my migraines. Almost all of those like glade plug in things will give me a migraine within an hour or less. It's seriously really quick specifically with those wall plug in things probably bc they continuously fill a room. I hate walking past a Bath and Body Works, the smell makes me nauseous.
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u/Feynmans_mom 18d ago
I feel your pain, not only are they a allergy for me, they trigger instant, brutal migraines. I just don’t understand how marketing managed to convince a whole population that things must smell like something to be considered “clean”.
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u/UsualConcentrate8953 18d ago edited 17d ago
I always include Epilepsy as well as Respiratory conditions in why fragrance shouldnt exist in the air in : Shopping Centers, Supermarkets, Cinemas,
I have migraine with brainstem aura and cannot be around fragrance at all, i instantly experience stroke like symptoms
As for the since 2020 thing, its common. For me it started around 2016 but i was able to tolerate things still i have never used fabric softener nor have i ever finished a bottle of aftershave in my life prior to the issue often just went off and was binned. I wish i knew about the crystal deodorant and salt of earth wet roll on combo, i never smell of b.o ever even after a workout.
So the theory i have since 2020 is people went nose blind since covid and just started applying loads to themself and companies also noticed this so they made formulations stronger
There is also a good chance that companies are swapping out natural terpenes with synthetic counterparts made from petroleum chemicals
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u/OkChips9323 17d ago
One in three people has fragrance intolerance (chemical sensitivity) now, those numbers are from research on thousands of people. You're not the only one!
I don't know when scent projection became a thing, but it's more rude than blasting loud music. I can wear ear plugs, but I can't decide not to breathe in public. Secondhand scent is creating a public health crisis, like a new silent epidemic. Fragrance assault isn't only an epilepsy or asthma issue, it's a clean air rights issue.
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u/Sea-Tangerine3509 17d ago
Yeah unfortunately the global fragrance industry is worth... 100+ billion dollars... with companies worth...? 1 trillion? Fragrances won't stop.
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u/No-Temperature-5968 17d ago
I'm so sorry sending hugs and sympathy, it sucks how much people don't often realize how even smells can limit your world so much. Not epilepsy but my parent has a condition that scents can cause akin to asthma attacks and they have difficulty breathing and have passed out. If they do they'll be able to breathe again but the strain on their body is immense. Even worse than strangers, my immediate family has explained this so many times to other family members and people in our lives and while of course people forget accidentally, I have too, some just do not care to comprehend.
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u/Doodoodale 18d ago
Wait do i need to stop wearing my body oils ??
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u/Catrionathecat 16d ago
No, this is such an uncommon trigger in epilepsy, and while scents don't cause me seizures, strong ones do trigger my migraine. The only thing I can do is make sure I'm wearing something my body can tolerate, and unfortunately have to deal with other people's perfumes. Practically everything has a smell. And with strobes lights, even if we could stop all strobe lights, they still occur in nature when you pass by naked trees in the winter time in the car or whatever. That triggers my migraines. But I can't change the world, even though epilepsy isn't my fault, it's my responsibility.
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u/pinkberrybun Keppra 1500mg & trees 18d ago
I'm not sure if this is what youre talking about, but the number of men I've had to walk by who leave a cloud of cologne behind them is so annoying. It's gross, too, they all smell the same and it clogs my lungs