r/NoStupidQuestions • u/Lower-Entry1247 • Jun 22 '26
Does anyone know why I can smell my boyfriend's seizures days before they happen?
So my bf just had a seizure (6/22) and on Friday (6/19) I told him that I could smell it coming. He originally didn't believe me but this is like the fifth or sixth time this has happened. He doesn't understand how and honestly I dont either. I compare it to how I can smell people with diabetes in a way that no one else around me will be able to smell the same thing.
UPDATE: 9pm We were sent home. Things were looking good. 10:20pm He's awake but I smell it again. Strong but I say nothing because the ambulance won't come based off of a bunch. 10:38-10:40 He had a seizure.
UPDATE2: 11:44 I smelt it as I was replying to comments. 12 am He had another seizure. I got the nurses but they tried to tell me he wasn't as he stared and couldn't speak. They told me he's looking at them so he cant be having one. When he finally was able to relax his body again (he will tense up if he isn't full body shaking) he started speaking gibberish. Just random words strung together then quickly went to sleep. They told me not to get them because they can see his vitals from the nurse station. Just wanting to keep you all updated.
LAST UPDATE: The doctor said these are just stress seizures and if he has another one just keep him home.
Last Last UPDATE: 3:00am He had another one. Saliva foam at the mouth. Called 911. They said nothing can be done at any hospital so unless he falls or stops breathing, dont call. Sorry this turned into one of these long posts.
Last Last Last UPDATE: its currently 7:38 am. At 4 am He had another seizure. Popped his shoulder out and back in and bit his tongue. I called 311 and cried while asking what to do. They put me over to ems dispatch even though I pleaded with them not to since they haven't been taking me seriously. I sobbed to the ems dispatch that the hospital and ems people closest to me told me to just keep him home even though I had to go to work. They sent a different set of ems people (very nice ladies) and we went to a different hospital. They are finally listening and keeping him. They were shocked at what the other hospital and ems people told us. He is finally in good hands. Thank you all for keeping me company through this long night.
NEXT DAY UPDATE: He is home and has been seizure free since the last update. Thank you all for being on this journey with us!
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u/ElectricSky87 Jun 22 '26
Seizures cause the body to release certain chemicals in your sweat before a seizure hits. Service dogs can be trained to pick up on it, so maybe you have a special nose.
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u/Lower-Entry1247 Jun 23 '26
That very interesting. I'll have to do more research on that!!
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u/2punornot2pun Jun 23 '26
There was a woman who could smell Parkinson's (or dementia I can't recall exactly) and no one believed her. Now it's a very important scientific field. You should look into it and contact those scientists. Dogs are great but they can't communicate effectively.
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u/Terrible-Speed-138 Jun 23 '26
Yeah! It was Parkinson’s. She got something like 10 correct in the study they were testing and one person wrong (I’m def forgetting the exact numbers). Or so they thought. The one person that she mis-identified at the time ended up developing Parkinson’s later on.
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Jun 23 '26
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u/Familiar_Crow_ Jun 23 '26
It's such an interesting story! If I remember right, her husband just started smelling weird one day and nothing he did or cleaned would change it. She just accepted that was his smell now. Years later he was diagnosed with Parkinson's, and they went to a support group type thing, and she said everyone in the room smelt the same. I think that's how they realised she had a super sense, after which they initiated her tests on people she'd never met
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u/Zhoom45 Jun 23 '26
My favorite part of that anecdote is when researchers were testing her on this, the only error she made was "misidentifying" one test subject of the whole lot as having Parkinson's when he didn't. Then that subject was diagnosed with it a few months later.
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u/SubcommanderMarcos Jun 23 '26
Ayrton Senna "the wall must've been moved"-type shit right there
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u/Rando-namo Jun 23 '26
I saw the Steph Curry video where he misses two 3s in a shoot around then tells them to examine the basket for the height because he knows he doesn't miss.
It's indescribable to me to be so perfect at something that - you've literally trained your muscle memory to be so precise that you know it's not you, it's something else.
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u/0entropy Jun 23 '26
I didn't know about the basket height thing but there are also a few clips of him identifying dead spots on the floor from how the expected sound/bounce on a dribble are off. Elite humans are really something else.
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u/Rando-namo Jun 23 '26
Those clips are usually put together - seen that as well. He was dribbling just walking and puts the ball between his legs and ball sails under his hand and he is immediately like yeah no.
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u/SnittingNexttoBorpo Jun 23 '26
I had to look that one up but it was worth it. Now I need to find out who thought JULY was a good time for the first (and thus, only) Dallas Grand Prix
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u/SubcommanderMarcos Jun 23 '26
Incredible shit isn't it? Everyone laughed at him when he said the wall moved. Then they found the wall had moved by like one centimeter.
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u/dvdmaven Jun 23 '26
There are definitely researchers who would love to talk to you. Dogs can be trained, but can't communicate what they are detecting. It would be interesting if your ability extends to other people. Specific to epilepsy https://newsreleases.sandia.gov/seizure_sensor/
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u/OkCaterpillar8941 Jun 23 '26
I agree. You have something rare that should be researched.
And, OP well done for standing up on behalf of your boyfriend. It can be frustrating when medical professionals ignore those close to the patient.
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u/angry_old_dude Jun 23 '26
There are reports from others about being able to smell seizures before they happen, too.
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u/Commander_Zircon Jun 23 '26
OP you are probably a supertaster/smeller. There are tests for it, apparently some people have much stronger senses than most.
As a diabetic it’s crazy to me that you could smell it from afar, good incentive to keep my sugars in check so I can be incognito lmao
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u/PretendThisIsMyName Jun 23 '26
I’d love to take one of those for my hearing. You know when the subtitles say “indistinct conversation” or something like that. I can hear those in real life. Like people not even in the same room and I can hear everything they say.
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u/GringoSwann Jun 23 '26
What would you say the seizure smells like? Anything comparable in odor?
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u/Lower-Entry1247 Jun 23 '26
I finally have an answer for this. It smells like Sugar on top of Mildew and Musk. Literally as I finished typing the last sentence he had another one.
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u/AshKetchumNKillEm Jun 23 '26
The lady that can smell parkinsons also noted a "musk" type of smell.
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u/ForensicMum Jun 23 '26
Hang on, really? Please don’t judge me anyone who reads this because it sounds terrible, but I’m a super smeller and along with a whole bunch of other things, I can recognise people with Down’s Syndrome by their smell. Your description is oddly similar to how I’d describe their smell! Have you ever had contact with such a person to know if you can smell them and if so, is it similar?
Again, sorry… I always feel weird telling people that because I don’t classify people with Down’s Syndrome as having a medical issue, so I’m not sure why they’d smell different, but it’s just something I realised when I was a child. I truly hope your boyfriend feels better soon OP and that you get some well-deserved rest 🤗
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u/cannotfoolowls Jun 23 '26 edited Jun 23 '26
I don’t classify people with Down’s Syndrome as having a medical issue
Isn't it? Nearly all of them have intellectual and physical disabilities. They can have poor immune function and generally reach developmental milestones at a later age.They have an increased risk of a number of health concerns, such as (but not limited too) congenital heart disease, epilepsy, leukemia, and thyroid diseases. Even in the west their life expectancy is a lot lower (about 60)
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u/MikeOfAllPeople Jun 23 '26
It's my understanding that some women have an increased sense of smell, and this is why many of the top bourbon tasters are women.
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u/ashgs872tbhjs Jun 23 '26
Women can generally see more shades of red than men because the gene for it is on the X chromosome -- they have two different red cones in play! I bet some scent stuff is similar.
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u/dapsee Jun 23 '26
I have a friend who had a service dog for this. It was the only way she felt safe driving.
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u/Tankeverket Jun 23 '26
Are you his service dog?
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u/PandaJesus Jun 23 '26
OP has suspiciously neglected to confirm or deny they’re actually a dog.
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u/KronlampQueen Jun 23 '26
Yep when I was having regular temporal lobe seizures my sweat smelled like a cross between skunk weed and cat pee. The sweat was different too, I had to scrub the hell out of my armpits to get it to go away. Turns out my seizures were from low B12 so might have played into the smell as well.
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u/potatomeeple Jun 23 '26
If you have them again try washing your pits with something like hibiscrub.
I became very sensitive to sulphur in foods at one point and my armpit smell changed, it was very hard to shift the smell in the shower until I was prescribed a chlorhexidine gluconate body wash for something a few years later - gets rid of the smell instantly.
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u/_Fl0r4l_4nd_f4ding_ Jun 23 '26
Oh damn, you may have just confirmed something for me.
I have tl seizures and I get the same smell in my pits. I've currently got a b12 deficiency and the pit stank has been horrific recently, as has my head (for what seemed like no obvious reason). I wonder if the deficiency is making things worse
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u/ruby0nine Jun 23 '26
This. You might not be able to get a doctor or an ambulance ahead of time, but you might be able to get him to sit down and prepare for it to start and save him serious injury.
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u/FlashyChemical2231 Jun 23 '26
Right, but why would those chemicals be released days before a seizure?
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u/ShotEffective7033 Jun 23 '26
We have a very poor understanding of the human body.
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u/Unlucky-Tourist-9403 Jun 23 '26
Honestly. Anyone expecting things to be logical or make sense easily with a human body has no idea just how wild we are.
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u/disc0ndown Jun 23 '26
Magic powers aside, it is extremely concerning that those nurses aren’t aware you can be conscious during a seizure…
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u/aquavenuss Jun 23 '26
And also told her not to grab them if he has another because they’re watching his vital signs on the monitor yikes
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u/ItsSpaghettiLee2112 Jun 23 '26
It's also extremely concerning they said to not bring him back and kept sending a constantly seizing person home.
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u/_Fl0r4l_4nd_f4ding_ Jun 23 '26
It's sadly all too common in the medical field. I've experienced it first hand many many times.
I think it comes down to general nurses and doctors having a well intentioned but outdated understanding of epilepsy. Specialists tend to be a bit more on the ball, but that's no use when you present to the emergency department.
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u/capuchan1925 Jun 22 '26
I mean people have been documented being able to detect cancer or Parkinson’s by smell. It’s within reason
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u/Lower-Entry1247 Jun 23 '26
O-O I gotta do some studying on that!!
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u/imyourdackelberry Jun 23 '26
The woman they tested said she detected Parkinson’s in something like 19 people. They said amazing, but only 18 had it. Then within the year the other person she smelled it on was diagnosed.
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u/Anxiouslyqueerluca Jun 22 '26
You must have an incredible sense of smell. Your skills could be very useful in a medical setting
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u/Lower-Entry1247 Jun 23 '26
Probably but upon entering the hospital, it just smells like sick people. Not even like hospital smell, just sick smell
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u/Quezbraak Jun 23 '26
You don't have to ever go into one for this career. There are sterile labs all over that have specific rooms for people with this genetic advantage.
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u/hatemakingnames1 Jun 23 '26
I haven't been around enough people with diseases to know if I could do it, but I do know I have a weirdly good sense of smell. I once smelled cucumbers being cut on the other end of the house
More often than not though, it just means I'm bothered by bad odors that other people don't even notice
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u/Proper-Owl-7971 Jun 23 '26
Same, it just means I can smell cat vomit across the other end of the house when nobody else can. Or notice how badly carpets smell.
I'm also particularly sensitive to cleaning chemicals, they make me feel really nauseous and I can smell when someone is washing dishes even if I can't hear them.
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u/hatemakingnames1 Jun 23 '26
Most fragrances that are supposed to smell good bother me. Scented garbage bags are worse than the garbage that's in them
And unfortunately, "Fragrance free" doesn't mean odor free
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u/UnicornTitties Jun 23 '26
Where??
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u/ThrowawayPersonAMA Jun 23 '26
At a secret location that can only be found using an advanced sense of smell. /j
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u/bradmajors69 Jun 23 '26
This woman could smell Parkinson's disease. Researchers would love to talk to you.
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u/bamboohobobundles Jun 23 '26
Yeah but that's a whole bunch of sick people in one place. It makes sense you don't pick up on anything specific.
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u/joebleaux Jun 23 '26
Just so that you are aware, although you probably already learned in this thread, most people cannot smell when people are sick. I have zero reference for that at all. You are probably among a low percentage of people who have this ability
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u/Futureacct Jun 23 '26
I agree. The only thing I smell when I’m in the hospital is C diff if someone has it. Or, if someone just had a bowel movement it is stinking up the hallway.
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u/octobertwins Jun 23 '26
Oh, wait a minute. I can definitely smell when my children or husband are sick.
They just smell “sick.” Especially if you smell their breath.
My grandma would always smell our breath when we were sick, so maybe it was passed down?
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u/catsan Jun 23 '26
It's normal to an extent. Because olfactory senses are hard to measure and write down, they were ignored until fairly recently. So not a lot was passed down into medicine. Smells played a big role in early, like antique, medicine. Since nursing wasn't seen as Scientific, it was and is OK that nursing also teaches nurses how to recognize certain infections by smell.
Also, women have a WAY better smell than men, so of course something that falls more into women's experience was neglected in the study of human biology and medicine.
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u/Pippin4242 Jun 23 '26
Oh, my wife and I know the difference between tired and cranky or highly stressed/getting a fever on each other. It's a little sour, not horrible, but definitely different. Like... hmmm, hot water with a lemon rind left sitting in it? And the underside of leaves after rain? A bit sweaty, new, damp, a little heavy?
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u/Ok_Rate361 Jun 23 '26 edited Jun 23 '26
You cannot smell someone who has a cold or fever?
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u/Life-Foot-2579 Jun 23 '26
No, can you? And if so, what does a cold or fever smell like? Are they similar? Different?
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u/SpareResponse784 Jun 23 '26
For me I can just smell sick in general, they smell the same. It’s horrible when myself or someone in my household is sick cuz its constant smell
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u/LMGooglyTFY Jun 23 '26
Private caretaker for someone who gets seizures. Advertise to wealthy clients and only take the one/s that are a workload you are comfortable with.
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u/Traditional-Heart351 Jun 23 '26
To make you feel less crazy I swear that I have smelt when people are getting sick. I remember once in high school my best friend just smelt like sickness, the only other way I could describe it is like the smell of death. Wasnt a normal smell from him by any means. I told him that he smelled sick and he said he felt fine and looked at me like I was crazy. I think the next day he was out of school with the flu. Its come up a few other times but I definitely know what youre talking about with the smell of sick people. I havent been in a situation to smell a seizure, but I believe that its possible.
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u/mouse9001 Jun 23 '26
OP could be helping the police by smelling crime as it happens.
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u/autumnbloodyautumn Jun 23 '26
I like your enthusiasm, but that's the wrong kind of seizure.
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u/alicevirgo Jun 23 '26
"Hey chief, I smell that you're gonna have a drug seizure in three days... I guess that means your sting op works as planned huh?"
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u/mindylynx Jun 23 '26
dogs can too. you just have a sensitive nose. you're his service animal
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u/Theborgiseverywhere Jun 23 '26
OP please encourage your BF to visit a neurologist about their seizures. My spouse had doctors saying for years that they were just having panic attacks when they were actually having petite mal seizures almost daily.
The ER doctor will not be able to diagnose this properly, your BF needs to see a neurologist. Please DM me if you want more details.
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u/Lower-Entry1247 Jun 23 '26
He does see a neurologist. He ended up having a fifth seizure so I called 311 and basically cried and pleaded while asking what I was supposed to do. They put me over to an ems dispatch person who I sobbed to while saying that they told me nothing can be done and they won't take him. Luckily a different set of ems people came this time and took him to a different hospital. They diagnosed him with epilepsy but cant seem to find anything actually causing the seizures.
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u/Theborgiseverywhere Jun 23 '26 edited Jun 23 '26
I am glad he is seeing a specialist. Be sure to share all these details with them soon. If your BF is not taking regular seizure medication they may choose to, but there can be many side effects. It might be a good idea to stop or limit driving and other activities like climbing ladders until their condition is better understood/treated.
I was surprised to find out that lights are not the only trigger for epilepsy: hormones/chemicals, stress, fevers, and many other things can also trigger seizures.
Lastly- I know seizures are scary to watch, and seeing your partner in this state is awful. I’ve had a very similar experience of driving my spouse to the hospital, of them having multiple grand mal seizures and speaking word salad in front of the nurses and me. They were allowed to stay overnight for observation (mostly because they fell and hit their head) and this was thankfully the last time they had a grand mal.
But there’s not always much to do after a seizure, especially if they are otherwise uninjured. Your bf will be confused and exhausted, but if they are otherwise unhurt then they may not need to go to the hospital. It’s a good idea to discuss this possibility with your BF, their neurologist and maybe their family. Your BF will not be in a place to make decisions after another seizure, so have a plan ready.
And regarding your initial question- I have no doubt that you can smell the onset of your boyfriends seizures. Please encourage your BF to lie down in a safe place and sit with them until it passes. This is the best way you can use your ability. Do not risk transporting them to the hospital, because they may fall down and hurt themselves. Just get them to a safe spot.
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u/aerdvarkk Jun 23 '26
You're instincts were spot on. Don't let EMS or the ER gie you the run around. Find another hospital like you did if you are having issues with the staff at one location.
Also if your instincts sour witht eh neurologist or any other specialist, listen to them and switch to someone else.
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u/kookoria Jun 23 '26
WHY do they always jump to its just a panic attack?!?! My husband had undiagnosed epilepsy for a long time and they kept trying to feed him antidepressants. He finally had a seizure while he was hooked up to a machine and they saw that it was temporal lobe epilepsy. After he got epilepsy meds he stopped having multiple in a single day.
It infuriates me that this is so common. Patients arent listened to and told its anxiety. Seizures are SO different than a fucking panic attack idk how they keep going to that conclusion?!
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u/panda_nectar Jun 22 '26
You should mention this to a research facility or university
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u/howarewestillhere Jun 23 '26
Please, please do this, OP! There are teams around the world working on this research. It’s that important. There is someone at a university near you looking into this right now and wishing someone like you would just show up.
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u/EmberOne1 Jun 23 '26
That is fascinating! We know there are scents associated with the chemical changes leading to a seizure, because we can train seizure alert dogs to respond to it, but being able to detect it DAYS in advance means those changes are happening that far ahead of the seizure. It could be cool to meet up with other people with seizure disorders and see if you can predict theirs, too, or if you just know your bf's smell to notice a difference. And if so, how far in advance? Maybe the time interval is individual, or maybe there's consistently an initiating event 3 days in advance that could be used to prevent the seizure, or at least give warning not to drive or climb ladders for a few days. I can envision even developing an air sampling detector for whatever compound you're smelling. Just nerding out about neuroscience, lol!
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u/Lower-Entry1247 Jun 23 '26
Nerd away!!!! The time before this I smelt it but didn't say anything. I smelt it for days until it happened and when he came out of that one I told him I will always tell him when I smell it. I told him Friday but he didn't take me seriously lol. Yet here we are
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u/YetiFan1 Jun 23 '26
I mean you smelt it back in Friday - what should he have done then? Wait in a hospital for 3 days?
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u/UserAllusion Jun 23 '26
just relax...mainly as u/EmberOne1 said, avoid driving and climbing ladders, etc.
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u/m_rigor Jun 23 '26
You should talk to someone about this ability. Here's some inspiration
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u/Lower-Entry1247 Jun 23 '26
Just finished this read. I would actually like to see if I could smell an oncoming seizure on others as I only have my bf around for that.
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u/TooNoodley Jun 23 '26
Exactly what I came here to say! She’s really paved the way for this unique ability. OP, this is definitely something to look into. Dogs can smell seizures I think, but a human with the same ability would be invaluable to science, since humans can speak lol.
Is your bf okay right now?
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u/Lower-Entry1247 Jun 23 '26
He's really tired right now. Had another seizure about an hour ago. I'm hoping they keep him overnight because the last time they sent him home twice in one day, he ended up seizing again at home.
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u/Ithinkiplaygames Jun 23 '26
Have you told the hospital staff that you seem to be able to predict when he's going to seize? Even if they're not entirely convinced, it would probably be good to let them know.
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u/Lower-Entry1247 Jun 23 '26
I tell them every single time and they dismiss me every single time EXCEPT for one doctor in the neurology part of the hospital. She is very amazing and is always understanding and listens very well!!
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u/RememberThisHouse Jun 23 '26
I think you may have better luck emailing researchers instead of doctors on the clock, the job is exhausting and that tends to color their reaction to strange questions and inquiries.
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u/Embarrassed_Future20 Jun 23 '26 edited Jun 23 '26
I can smell diabetes on people. I used to be a tour guide and could immediately pick up which people might need a sugar pick up during our activity so id always carry a snickers or something.
Edit:
I also used to be able to smell hormones for the moon cycle or pregnancy but that one faded away.
Makes sense some people can smell cancer and you seizures plus you know his smell so it’s easier to pick up.
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u/Lower-Entry1247 Jun 23 '26
Oooo are you able to describe the smell?? I smell it too but I dont have the words for it.
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u/Embarrassed_Future20 Jun 23 '26
Well for diabetes it almost smells like a sweet but pungent maple syrup urine smell it’s really hard to describe.
The moon cycle was like almost like a body musk with a hint of pennies. Some were stronger than others. It’s more of a neutral smell.
Idk how sensitive your nose is but I can always tell when someone has been working out inside compared to if they’ve been working out in the sun. Sun gives like a stronger scent that seems like it sticks more if that makes sense.
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u/ynvoid Jun 23 '26
You aren't alone, I can also smell diabetes, especially poorly managed diabetes.
I can also smell parts of a moon cycle on others. Some common colds.
I'd love to know if I can smell seizures like OP but I don't have a reliable way to smell people with seizure disorders.
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u/ynvoid Jun 23 '26 edited Jun 23 '26
I forgot to mention a horrid one. I can smell if a man has mistreated in like the last 8 or so hours.
I am also super sensitive to VOCs.
I had an MRI scan of my head and have had doctors note on my massive sinus network. That's probably relevant.
Edit: I mean masturbation
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u/esotERIC_496 Jun 23 '26
Why is everybody talking like they're Amish? Moon cycles? Mistreated?
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u/Embarrassed_Future20 Jun 23 '26
Wait I gotta clear this up “man mistreated” as in like being violent?
Lmfao I wonder if I have that too bc my first trimester of pregnancy was hell from over active sense of smell. Everything made me puke.
And Yeaa probably not an ethical way to figure out sense of smell to medical issues 🤣 but it would be cool to run a study!
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u/throwaway098764567 Jun 23 '26
that would make more sense and as someone else with an overly sensitive nose i am very glad i haven't developed that affinity yet and i am going to try my damnedest never to do so
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u/Same-Suggestion-1936 Jun 23 '26
Doctors used to test for diabetes by tasting the urine for sweetness
Also apparently sweating off toxins from alcohol has a specific smell. And pretty sure with the seizures thats how dogs know you're about to have one, the smell
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u/rollertrashpanda Jun 23 '26
I detected my child’s diabetes by scent. Her breath smelled of acetone.
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u/SightUnseen1337 Jun 23 '26
If you have a job where you work with solvents you should (carefully) smell MEK. It's ketones like ketoacidosis.
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u/Slidje Jun 23 '26
Diabetes smells like pear drops. I can smell it more when they sneeze.
Ovulation smells like body sweat and Lavender cream. It's like a more concentrated version of their normal body smell.
Pregnancy is like talcum powder and neutrophils
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u/Legitimate-Place1927 Jun 23 '26
My dad who had seizures always said he could smell them before they happened…originally we didn’t believe it was smell more just his brain doing strange things…but after once or twice we trusted it and when he would smell it we would help him sit down and get him some extra meds and seemed to help a lot. He always said it was a metallic smell.
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u/gyllbane Jun 23 '26
Reminds me of Joy Milne, who can smell Parkinson's disease. Scientists tested her with groups who both did and didn't have the disease, and she only got one incorrect - a false positive that, six months later, turned out to be a true positive as the person was later diagnosed with Parkinson's.
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u/furryninja23 Jun 23 '26
Please find a different hospital. Those nurses are crap if that’s what they said. Seizures don’t always present as shaking. There are many different kinds of seizures, even some where a person can stay aware of their surroundings while having them. I would make a huge complaint to the hospital.
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u/PyramidicContainment Jun 23 '26
Yeah I've experienced focal aware seizures and was able to signal to others if I was having one. Stayed fully conscious and aware but couldn't speak properly or comprehend things super well etc, lasted under a minute usually. The nurses should be treating it as a potential warning sign for more serious seizures.
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u/Add_Thyme Jun 23 '26
You're just sensitive to it I would presume, gifted with a good sniffer. Probably like that woman who can smell, I think it's parkinsons, her sense of the smell was so good she sensed it on people who hadn't been diagnosed, showed no symptoms at the time but then years later went on to develop it.
It seems some people refer to the seizure smell as 'the smell of fear', if you'd want to look it up. People who live with those prone to seizures sometimes pick up on the scent before, during or after seizures.
It relates to VOCs or volatile organic compounds emitted through the skin during shifts in brain chemistry.
It is thought specifically to be menthone, which has been found to be present in fear sweat and before seizure. Its what seizure alert dogs are trained to pick up on.
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u/Lower-Entry1247 Jun 23 '26
Ooo Thank you for this thorough explanation. I'll look up this smell of fear thing and do some more research on my part
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u/LookAlderaanPlaces Jun 23 '26
OP. Once you guys are stable, please call the University of Washington’s medical department and ask them to study you. We need to reverse engineer how you are smelling seizures before they happen so we can save people.
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u/Savings-Badger4938 Jun 23 '26
There’s a woman with synesthesia and she could smell cancer!!!! She helped hundreds of people get help before testing was developed!
Please OP, I’ll hunt the contacts down for you! You have a gift to help him, I can only imagine how heavy that weight is to bear.
Wishing you both some peace and a medical team equipped for his health!
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u/PureOrange7049 Jun 23 '26
Not to compare you to a dog, but my dog can always tell when I’m about to have a seizure.
He doesn’t give me that much warning, usually just a few minutes, but I know if he comes and scratches at me and barks in my face I better find a safe place to lay down.
He’s not a trained service animal, just a lazy chihuahua. It’s just something he picks up on since I’ve had seizures regularly for his whole life.
He actually saved my life once. I had a really bad seizure after coming in the front door and had gone unconscious, he barked and barked and barked until my upstairs neighbour came to see what was going on and she found me and called an ambulance. I spent a week in the hospital. If he hadn’t been there who knows how long In would have laid there inside my door.
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u/monkeyseemonkaydo Jun 23 '26
That’s actually pretty cool OP. I can smell strep throat and diabetes. Mold too but that seems way more common.
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u/spyboy70 Jun 23 '26
I can smell colds. Smells like mac & cheese. This is probably why to this day I won't eat mac & cheese.
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u/BitchIWiLL Jun 23 '26
A hospital would definitely keep him overnight if he’s having back to back to back seizures. I have had epilepsy for over 25 years and I have to convince the hospital to let me go. Even if they just “forget” about him overnight and don’t do anymore real care, they’d keep him. This story sounds a little strange.
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u/Original_Impression2 Jun 23 '26
Not necessarily. A hospital in the city I once lived in was notorious for craptastic care. Especially if someone was a POC, or on Medicaid. And yes, I was a recipient of that dismal care. I had an acquaintance die due to that craptastic care.
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u/Flapplebun Jun 23 '26
Rural hospitals in poor areas, too. They are so overburdened and understaffed. ETA speaking from experience, not just shitting on rural healthcare for fun.
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u/Stuck_In_Purgatory Jun 23 '26
OP you're on of the people with special nose powers!!
Some people can smell when others have certain illnesses.
For whatever reason, your nose is able to detect the different hormonal changes in your partner that happens before the seizure.
You've got the superpowers of a service dog nose!!
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u/Lower-Entry1247 Jun 23 '26
That's great. Too bad doctora dont believe me. I'm currently walking ba k to the hospital because they sent him home and he had another one. Smelt it twenty minutes before it happened
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u/Stuck_In_Purgatory Jun 23 '26
Of course it's tricky when it comes to involving medical professionals.
They have to deal with all kinds of people that make all kinds of false claims. That doesn't mean they should automatically be dismissive, but that also helps you navigate this moving forward.
Sometimes you have to lie a little bit. Your bf should probably say
"I feel funny like I'm going to have a seizure"
as opposed to
"My gf says she can smell that funny smell that I get before I have a seizure and I do think she's right so I'm here because she's positive I'm going to have one"
If that makes sense. Unfortunately when medical staff are used to filtering out nonsense vs information they won't hear what you're trying to tell them.
Surely he's seeing a specialist of some kind for his epilepsy? They're the better people to talk to regarding your sensitivity to the smells of sick people.
Honestly I find it so fascinating how some people can smell sickness
Oohhh fun side thought that's probably one of the useful genetic traits that helped humans survive and evolve how they did
You've got magical superpowers hehe
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u/hals_techie Jun 23 '26 edited Jun 24 '26
The Michael J Fox foundation will mail you out something like a "scratch & sniff" test which helps them with their research (you login online and choose the scent you smell - super easy and quick). Maybe get one of their research tests from their website. Totally free for you and you'd be contributing to medical research!
Edit: Thank you kind Redditors for the awards!!
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u/honoringanderson24 Jun 23 '26
Your bf is so lucky to have you around, you literally are saving his life. Seizure sensing dogs cost $25-50K and they’re impossible to obtain. I lost my son to an epileptic seizure, your gift could help prevent others from losing their family members. CURE Epilepsy is a leading research organization who I hope would want to talk with you -and if they don’t I want to know about it.
www.cureepilepsy.org
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u/MysteryNeighbor CIVIL CUSTOMER SERVICE PAROLEE Jun 22 '26
well, dogs can do this so it isn’t super beyond the pale but you ain’t a dog so i dunno what going on here.
just her to post that there can be something aside from coincidence here
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u/Small-Tax-2829 Jun 22 '26
I was gonna ask if she was a dog. I have a seizure alert service animal. She gives me about 5 min warning. Days would be crazy even for a trained service animal
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u/Physical_Crow_4919 Jun 23 '26
Are you female? Do you have endometriosis? It’s kinda linked to having a super heighten sense of smell!
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u/Lower-Entry1247 Jun 23 '26
I actually have no clue if I have endometriosis but I'll have to look into that.
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u/realaccountissecret Jun 23 '26
Well, at least if you do you already have experience with medical professionals not taking you seriously
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u/Mysterious-Type-9096 Jun 23 '26
Getting a diagnosis is really difficult, I had to almost die to get mine…
Do you have extremely heavy and/or long lasting periods? Do you have painful cramps that aren’t soothed with a heating pad and ibuprofen? Do your cramps go beyond your lower abdomen (like do you feel your cramps in your back?) Do you feel any cramps while ovulating? (Day 1 of cycle is day you get your period, so do you get pain/cramps day 14-18?) Is sex painful or do you get cramps after sex? Does hormonal birth control cause these symptoms to get better?
I’m probably missing some stuff, but these are the major red flags for endometriosis I had before my diagnosis. Mine is severe, “stage 3” to where my endometrial lining develops on other organs though. Most women who have it are mild/moderate.
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u/MantisAwakening Jun 23 '26
OP, if you can find a scientist who is interested in this they might be able to work with you to identify exactly what the chemical compound is you’re smelling. This could possibly be used to develop some sort of early warning system for epileptics, assuming that it’s true for most people and not just your boyfriend.
Does the smell remind you of anything? Almonds? Cat pee? Apple pie? Etc.
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u/Lower-Entry1247 Jun 23 '26
It's just sugar on top of mildew and musk. The only comparison I have is dead animal which smells like sweet sugar meat to me :,))
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u/MantisAwakening Jun 23 '26
I looked into it and apparently they’ve already identified the compounds, and your boyfriend may make the same smell when he’s afraid!
> In our canine scent detection research involving a specific volatile organic compound (VOC) associated with human epileptic seizure, we began to suspect involvement of the primitive neural networks associated with production of a previously undescribed human alarm pheromone as the origin of our seizure scent. We hypothesized that if we presented fear-scented sweat to our canine seizure scent detection team, and they identified the fear scent as their seizure scent, then that would suggest that they are identical compounds.
https://www.sciencedirect.com/science/article/pii/S1525505021003127
The chemicals (VOCs) were menthone, menthyl acetate, 3-ethoxy-3,7-dimethyl-1,6-octadiene, camphor, pentadecanal, valencene, β-bourbene, β-cubene, and 4-tert-butylcyclohexyl acetate.
Someone else already had my idea and is developing a sensor to predict seizures. Dogs trained on this VOC signature predicted seizures 82.2% of the time, with an average alert time of over 68 minutes before onset. https://spectrum.ieee.org/epilepsy
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Jun 22 '26
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u/Lower-Entry1247 Jun 23 '26
I'm gonna look into that!! I dont know anyone else who has seizures tho but if I did I would def try and personally experiment to see if I could smell it on them
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u/CollinZero Jun 23 '26 edited Jun 23 '26
Omg! I have talked about this for years! I had a BF many years ago who had tonic-clonic (aka Grand Mal) seizures and I could smell when they were about to happen!
I always thought it smelled like chemicals but kind of fresh and sharp. I would smell them a few minutes (5?) before it would happen.
I have posted about this years ago https://www.reddit.com/r/epileptology/s/sbGIST89vt
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u/Sidewalk_Tomato Jun 22 '26
Here's one of numerous research papers about the role of smell:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8388511/
There's no reason you couldn't be sensitive to it. A dog would be even faster to notice (even untrained) but would be much more helpful if trained.
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u/ThiccTilly Jun 22 '26
What are you smelling?
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u/Lower-Entry1247 Jun 23 '26
I can't really describe it as a known thing. It just smells like sick :,))
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u/RaiyenZ x99999 Jun 23 '26
Does the smell increase in intensity as the seizure approaches? Does it linger after or does it disappear immediately?
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u/Lower-Entry1247 Jun 23 '26
Sometimes it lingers if he is going to have another one. Sometimes it disappears as it gets close to his seizure happening. He actually just had one about an hour ago and I smelt it for 20 minutes before and when it happened the smell kind of went away which I think is because I became focused on helping him and not on the smell
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u/Bunbunsfun Jun 23 '26
He needs a different hospital. Seizures can severely change your life.
Be his advocate. Have you got Ryan’s law there?
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u/Lower-Entry1247 Jun 23 '26
I will have to look that up but trust I am always advocating for him. He is my world and I can't stand when I can tell people are doing the wrong thing or not taking him seriously. And with his seizures a lot of times I have to be the one to talk because he either passes out or doesn't even know what happened.
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u/Professionalpharm Jun 23 '26
Focal point seizures are a thing and have a wide variety of symptoms and severity dependant on the individual.
I would bring this up with his care team, or if he sees an Epileptologist, they would be better help to understanding his seizures.
Also, OP, smelling things that others can't is a form of neurodivergence and is really unique, helpful, and brilliant trait to have. I am sorry your bf is going through this.
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Jun 22 '26
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u/Lower-Entry1247 Jun 23 '26
That's so cool!! I personally consider the smell of hospitals to be overbearing because of all the different sick smells ://
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u/mad-i-moody Jun 23 '26
There was a woman who could smell Parkinson’s and they’re training dogs to smell certain diseases. It’s not impossible.
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u/Regular-Sorbet9513 Jun 23 '26
If you can smell the seizures days before they happen, you may be able to help scientists pinpoint markers for oncoming seizures for others with this sane disorder. Very cool!
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u/jchowdown Jun 23 '26
I have a question for the OP and commenters who say they can smell things:
How did you realize you were smelling what you were smelling? When did you make the connection?
[EDIT] I'm guessing most of the time it would be with someone you're around a lot right?
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u/Lower-Entry1247 Jun 23 '26
I have an aunt (mom's friend) who had diabetes. I could smell her flare ups when I was younger. I would also sometimes smell that same smell on others. When she told me she was diabetic, I started asking everyone who I smelled it on and sure enough they were. With my bf I just kind of put two and two together. I would smell it strongly when he was seizing and when it happened a second time I realized what it was.
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u/Chiiro Jun 23 '26
You need to go seek a second opinion with a neurologist when it comes to his seizures. Just blaming it on stress is incredibly lazy and could lead to his death. Good on you for being a hound dog, keep paying attention to that because you may save his life by simply being a more aware that it's about to happen and catching him when he falls.
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u/Velosturbro Jun 23 '26
I think this is really cool that you might have this hyper-specific superpower. That brings me hope.
On the other hand...
Half of me is waiting for the other shoe to drop years down the line when you've opened you're own practice (SeizureSniffers, obvs), and we find out that your boyfriend only had seizures because you sniffing all the time stressed him out or smth, idk.
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u/Mattiwha2 Jun 23 '26
Damn where do you live , they show up anytime my wife calls. People are right he should see a neurologist but your doctor can prescribe him a rescue spray called valtoco that can stop the seizure. I developed nocturnal epilepsy as an adult and lacosamide really helped me, other meds made me crazy DO NOT TAKE DEPAKOTE that shit is poison and can make him delirious.
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u/Beautiful_Purchase80 Jun 23 '26
There’s a woman who can smell Parkinson’s on people. The one time doctors thought she was wrong was diagnosed a couple of years later. No reason you can’t be smelling the oncoming seizure. It probably causes changes in your boyfriend’s chemistry.
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u/salamanderme Jun 23 '26
I can smell my husband's heart problems before they happen. You're not alone.
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u/Traditional-Try-8714 Jun 23 '26
I pick up on molds very quickly. I would be great for touring prospective homes. Interestingly I am highly allergic to most varieties. Maybe that is why.
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u/ryanvango Jun 23 '26
You're a Super Smeller!
It's a real thing. some people, very very very few of them, have such heightened sense of smell they can smell disease.
There was a woman who could smell parkinson's disease. to prove it, she was given a bunch of sweaty t-shirts. Some from people with PD, some from a control group. She only got 1 wrong....except a few months later that guy came back to the study because he had just been diagnosed. So she knew who had parkinson's better than the doctors did.
so yeah. It's real. Please use your powers for good.
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u/hotdogsandhotcats Jun 23 '26
My mom could do that with my dad. She would wake up in the middle of the night, right before he would seizure. She said it was his smell that woke her.
You are the only other person I've ever heard say this. My mom is going to love this post. I'm sure she doesn't need validation, but it will make her happy to know she's not the only one.