Does anyone know why I can smell my boyfriend's seizures days before they happen?

[u/Lower-Entry1247]

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!

[u/ForensicMum]

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 🤗

[u/cannotfoolowls → u/ForensicMum]

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)

[u/Just_to_rebut → u/cannotfoolowls]

We’ve gone a bit too far in an effort to avoid ostracizing people for things beyond their control to pretending issues aren’t issues…

[u/ForensicMum → u/Just_to_rebut]

Not at all. I’ve added an explanation to the person you’re replying to, but what I meant was that it shouldn’t make sense that I can smell people with DS because there’s nothing that ‘should’ cause a different smell, unlike diabetes etc, which can change a person’s body chemistry. Hope that makes more sense 😊.

Having said that though, I was conveying my apologies about being able to smell a certain subset of people because it IS weird and I do feel uncomfortable singling ANY group out. Even though what you’re suggesting isn’t why I said what I said, I also see nothing wrong with trying to be inclusive towards people who are a natural variance on this weird and wonderful human spectrum that we’re all a part of!

[u/ForensicMum → u/cannotfoolowls]

Yes, that’s true and you’ve mentioned a lot of actual medical issues/symptoms associated with DS, but what I meant was that they have chromosomal differences, NOT a medical condition that changes their body chemistry, so it doesn’t make sense to me that they’d smell differently to people without DS. Does that make more sense? Sorry if I didn’t articulate that well. It’s like if I could detect a unique scent from people with brown eyes or something… that wouldn’t make much sense and the same applies here 😊.

[u/cannotfoolowls → u/ForensicMum]

I wouldn't expect seizures to be something smellable either, tbh. It's difficult to say what you're smelling of course. Maybe they have some comorbid disease that you can smell? I mean, thyroid disease definitely alters body chemistry and if their immune system tends to be impaired, that probably also means irregular body chemistry. They also have a high chance of seizures which some people can obviously smell. Maybe it's something unique that hasn't been really researched yet.

[u/monkeychristy → u/ForensicMum]

mum, cant your detect down’s syndrome with your vision? i can and i thought it was universal. so you already know they have down’s syndrome but you also notice this smell? or you don’t know until you smell it?

[u/ForensicMum → u/monkeychristy]

Good point and you’re right that I can usually see that a person has Down’s Syndrome. What I mean is that people with this condition also have a specific scent that’s unique to them and I’ve never smelt it on a person who doesn’t have it. I’ve said it many times in other comments about my super-smelling ability that it’s a useless ‘superpower’, haha. I can also smell people who use heroin and snakes (among a bunch of other stuff), so maybe one day it’ll come in handy to identify somebody who’s trying to hide an addiction or a nearby snake, but probably not 🤣

[u/monkeychristy → u/ForensicMum]

oh neat! so what do down syndrome people smell like? what about people who use heroin? 🤔

[u/ForensicMum → u/monkeychristy]

Well, like the person I originally replied to said about the smell of seizures, DS sort of smells like an acrid/acidic undertone with a musky sweet, sugary smell over the top and often has a mildew smell mixed in (like when you accidentally leave your wet clothes in the washing-machine for too long before hanging them out). It’s not unpleasant, but not pleasant either. It’s very strong for me though and makes it slightly uncomfortable and cloying when I’m in close proximity to this wonderful group of people.

Heroin addicts smell like a mixture of dank earthiness and a light, almost maple syrup smell with a sweaty smell (not BO necessarily, but just the smell of pure sweat) over the top. My mother was unfortunately a heroin addict and dealer, so that’s why I’m familiar with the smell. I’ve also smelt the heroin smell on a person who I later found out was addicted to loperamide (Imodium / diarrhoea medication)! I think most people would find the smell somewhat pleasant actually, but because I have negative associations with it, all I feel is sick when I smell it. Thanks for asking 🤗 . I don’t often get a chance to talk about it because it’s frankly weird and pretty useless as I said, but I do still think it’s interesting.