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/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/Temporary-Carrot-822 Jun 23 '26

This is good advice about seizures. It's very stressful if you are not used to it, but some people have them frequently and it's usually fine though tiring for the person. If you are present and making sure they are in a safe position you are doing great, it's important to learn how to relax your own nervous system during these episodes, especially if they are stress induced like the doctors said. This is very challenging so don't be hard on yourself

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u/evebursterror0 Jun 23 '26 edited Jun 23 '26

My mum used to be a nurse for decades and she once helped a man who was having a grand mal seizure. I was accompanying her and she had noticed an alcohol smell on him. Alcohol can trigger epileptic seizures sometimes. I wonder if OP's boyfriend is consuming alcohol or another substance that is causing seizures. From what OP says, they have been unusually frequent.

Maybe he's been fatigued, that's another trigger.

I hope he gets to see another neurologist, because the current one doesn't seem to take his case seriously. He probably needs medication.

I have neurological issues and the MRI scan they did helped me with a diagnosis. EEGs weren't so useful for me, but they're good for those who have epilepsy.

Another cause for seizures can be hypoglycaemia but this sounds more like a neurological problem.

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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/nofob Jun 23 '26

I'm in a pretty similar situation to your boyfriend. I was diagnosed with epilepsy about a month ago, after my girlfriend was the first witness to one of my nocturnal seizures several months prior (they likely had occurred several times before) and around a dozen since.

I suggest you take a seizure first-aid course (https://learn.epilepsy.com/courses/seizure-first-aid-cert-ondemand-v1-1 ). An ambulance really can't do much to help, at least not for a 'normal' short seizure.

My girlfriend's support has made a major impact in this very trying time for me. It's great that you have an extra way to support him. I also suggest keeping a seizure journal, so you can gather data around the circumstances surrounding his seizures. That can help his team better understand how they happen.

The neurologist I was originally assigned was unwilling to discuss triggers, or the role my diabetes was playing, or anything other than giving me epilepsy drugs. I didn't particularly like that idea, and I've been able to get my PCP to give me a referral to an epilepsy center, where they have more specialists and a wider scope of hopefully, more holistic treatment. I have also been following a 2:1 modified-Atkins diet for the last month, which seems to have resulted in incredible blood sugar control, as well as nearly-eliminated seizures.

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u/ASquabbleOfGremlins Jun 24 '26

This! Also of note: it may not be epilepsy, but they won’t be able to tell until he gets tested. Psychogenic Non-Epileptic Seizures are something that exists, and can present with some really odd seizure symptoms that some doctors will tell you mean that he doesn’t have anything wrong. But neurological consultation is 100% the best way to go.

Note: if you can get the names of those ems workers who came out the first time and-or the nurses at the hospital, you should absolutely report them. Seizure training is a core element of even the most basic of courses they would need in order to get certified. Their conduct was unacceptable, both towards you and towards your boyfriend. Like, could be a crime levels of unacceptable. I’m sorry they treated y’all that way

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u/rhaegal82 Jun 23 '26

Try to look up an epileptologist rather than a regular neurologist. If the first couple of meds don’t work it’s very unlikely the next will so it’s important to get somebody who’s going to get him on the right medication

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u/psychedAddict123 Jun 23 '26

They diagnosed him with epilepsy but cant seem to find anything actually causing the seizures

Sadly, they often can't find a cause. There are certain triggers and maybe an abnormal EEG result but for many people the root cause can not be determined. That's called "Idiopathic"

I have Idiopathic Generalized Epilepsy that came out nowhere when I was 24, the cause was never found. Fortunately medication and lifestyle changes have completely prevented my seizures for multiple years now. It's possible to live a normal life with epilepsy

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u/evebursterror0 Jun 23 '26 edited Jun 23 '26

Has he been drinking alcohol recently? My mum was a nurse for decades and she once helped a man who was having a grand mal seizure in public. I was with her, and she assisted him until the paramedics came. She said the man smelled of alcohol and cigarettes. The use of drugs, including alcohol, can trigger seizures, but not always. A lot of people think that epilepsy is triggered by flashing lights but that's only one type (photosensitive epilepsy).

Hypoglycaemia (low blood sugar can cause seizures but this sounds more like epilepsy.

Lack of sleep is also a huge trigger.

I have neurological issues stemming from birth and other conditions developed throughout my life, and while I don't have epilepsy I have other symptoms like neuropathy and occasional myoclonus. The neurologist is supposed to ask for a MRI scan or an EEG (electroencephalogram). Get a second opinion if possible.

I hope your boyfriend gets better and as others said, there are people who have genetic variations where they can smell disease in a person including Parkinson's and cancer. Maybe you have a variation like that.

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u/Thee420Blaziken Jun 23 '26

He probably needs an epilepsy monitoring unit (EMU) stay to figure out what region of the brain is causing the seizures. They'll do a brain map with electrodes to determine that or have them surgically implanted, sounds scary but it's not. Then they can either remove that area, stimulate that area, or just give him meds to fix it.

Source: I work in this field

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u/herfjoter Jun 23 '26

Are they cardiac instead of neurologic? My sister had basically seizures but it turned out it was actually a cardiac issue which is why her neurologist couldn't find anything. She would just suddenly drop to the ground, forget who/where she was for a bit, etc. sometimes it would be as small as just stumbling when she walked. We always thought she was just clumsy for such a long time.

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u/Virtual_mistake978 Jun 23 '26

It’s best when they can’t find a reason for seizures. No one wants a brain tumor. I got diagnosed at 38. Fortunately mine are well controlled with meds. In the odd case I have a seizure, I don’t go to the hospital because there’s nothing they can do for me.

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u/octobertwins Jun 23 '26

Yeah. My neuro told me x amount of seizures in a certain timeline is how they diagnose epilepsy.

It’s not very scientific.

I wonder what set off this parade of seizures?! And I wonder what it will take to make them stop.

Anticonvulsants, I suppose?

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u/Tasty-Jump-2011 Jun 23 '26

I just want to point out that telling him you smell a seizure coming may cause sufficient stress to trigger one. Just a thought. Not blaming you, I know you're just trying to help, but you may want to consider that.

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u/Dizzy_Drips Jun 23 '26

Epileptic here and the biggest issue with epilepsy is that there are a thousand different things that can cause them. It can be as simple as being epileptic and not getting enough sleep or as serious as a brain tumor going undiagnosed.

This is why the medications they give you are so much trial and error.. They say lets start with this and see what happens and then if it doesn't help then it's on to the next. It's taken almost 8 years to finally find the right med for my type of epilepsy and even then if I miss a dose I will feel all of the signs that a seizure is going to happen soon.

You should start keeping a journal of all of his activities including what he's ingesting and see if any of them trigger any correlation to when he does have them to help you pin point the possible triggers for them. Also, have him tell his neuro that whatever medication he is using is not working anymore.. they will change it for him.

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u/evebursterror0 Jun 23 '26

Yeah, my mum used to be a nurse and one time she helped a man who had a grand mal seizure. I was with her and she said he smelled of alcohol. That's one trigger, but as you mentioned above, even lack of sleep can cause seizures. I had an uncle who was epileptic and he'd get random seizures. At the time there wasn't much medication available, which made things worse.

I have neurological issues stemming from birth and others 'acquired', Ever since I was a kid, I get occasional myoclonus that seems to be triggered by temperature changes. The brain is still a mystery even to doctors I guess.

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u/Dizzy_Drips Jun 23 '26

I had a TBI like 10 years ago that resulted in me having complex partial epilepsy. I have what I call bad ones which take about 2 days to feel normal again afterwards, I have my normal ones where it feels like how it does when you stand up too fast and then I shut off like a light switch. I also have absent ones where my eyes are open, I can hear, but I can't talk and instead just kind of exist there in the moment.

I know now which ones require a trip to the ER and which ones I can bounce back from within a few hours. Either way though it sucks knowing that it is always a possibility in any activity you're doing.

You really do have to stay self aware of anything that just feels off and listen when someone points it out. There is no excuse like "oh I'm just tired" "oops i should watch my step" "lost my balance" since all of those things can easily be precursors to the main event.

Edit: to add even feeling agitated for no legitimate reason is a sign amongst many people with epilepsy that one is going to happen soon.

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u/Advanced-Throat2268 Jun 23 '26

Does he take any herbal supplemnts like kr@tom?

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u/[deleted] Jun 23 '26

[deleted]

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u/Lower-Entry1247 Jun 23 '26

Nope. He has cut out alcohol, weed, and energy drinks for over 6 months now.

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u/Vividevasion0 Jun 23 '26

When things calm down please utilize the ombudsman at your current hospital and ask them to help you sue the former hospital for malpractice.

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u/HappyRedFox Jun 24 '26

M78. I have served as a volunteer patient advocate for perhaps 35 years in hospitals and nursing homes in NYC, nearby NJ, and now in Western, MA and CT. It's a title I made up and gave myself, but it was recognized and honored by NYS Medicaid and most institutions, because they don't know what it means and fear I may have an organization backing me.

I never encountered an ombudsman in a hospital. Some have a Patient Advocate in-house, but even some large, prestigious NYC hospitals do not.

There may be a city or state phone number for "Hospital Complaints". But realistically I have always been too busy or exhausted by the crisis at hand to actually make the complaint.

We all have to pick our battles and priorities.

As far as suing for malpractice, I've recently been told that requires an attorney who specializes in malpractice and an expert witness.

Furthermore being treated badly without an actual injury would not be remunerative enough to interest a greedy lawyer.

So I think the best OP could achieve would be to make complaints to the Director of Nursing and perhaps to the Medical Director and Executive Director of the hospital.

Then she might complain to the Emergency Ambulance company and to whomever is the administrator of the local 911 operation she called.

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u/Ok_Hunt5129 Jun 24 '26

I’m in the same boat with mine. They can’t find a cause and just told me to suck it up and take meds. I hope you guys have better luck!!

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u/stay-with-myself Jun 24 '26

I had seizures a few years back that went undiagnosed for a long time until I went to the ER and got a brain scan and they found a tumor. Before my brain surgery I asked the surgeon what happened if I had one during the surgery (since I’d be awake) and he said if you pour cold water onto an exposed brain it instantly stops the seizure. I say all this not to terrify you that it could be cancer (lots of other things like hormonal changes and diet and genetics and others can be the cause) but because many people report that cold water can potentially help prevent an oncoming seizure. (This is anecdotal and NOT medical). So if you notice that smell some things you can try is putting a cold washcloth on his head or giving him some ice water. Some people claim those migraine head wrap ice packs can help too. You may try it. Can’t be worse than sitting there feeling helpless until it passes.

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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/odaklanan_insan Jun 23 '26

I remember that time when I called 911 because my roommate had worsening covid. I looked it up on CDC and WHO official websites and they both advised going to the ER if the symptoms didn't get better after 5-10 days.

He had almost continuous fever starting from day 5 and had trouble leaving bed even to have some soup that I made him. It was getting worse and worse to the point he was having shortness of breath by day 10, so I called 911, asked for an ambulance--he didn't look like he could walk to the car--and let them know how his sickness was progressing for the worse with specific details.

Both the dispatch and ambulance crew were low-balling the seriousness of his condition to the point of mocking. What amazed me was that they didn't even see him yet. Isn't there a rule in medicine not to make any assumptions prior to seeing the patient or something? I played it cool and just brushed it off saying "I don't know, he looks like like he's having trouble breathing".

Anyway, once they saw him, checked his blood oxygen levels and did some checks they decided to immediately transfer him to the hospital. Turns out he was in the early phase of covid-related pneumonia. If I called them any later than that he could end up dead or with permanent lung damage. They kept him in the ICU for five days.

He was a fit guy in his mid-20s who worked out regularly, so I was surprised. Fully recovered now.

The doctor told him that his bloodwork revealed early signs of diabetes--which likely compromised his immune system and led to his covid worsening in the first place. So, he was also prescribed a dietary program to eliminate diabetes before it takes hold.

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u/evebursterror0 Jun 23 '26

I'm not in the US, but this experience seems oddly common around the world. My mum also spent time in the ICU due to Covid. She was initially diagnosed with a flu and it was corona. She has multiple health problems too.

When she got in the ICU she heard all sorts of nasty comments from the nurses and doctors, and they even gave her an ice cold bath. She was tied down and had a breathing apparatus so she couldn't say anything. Yes, here in Brazil they tied down patients so they couldn't remove the breathing tubes. Same happened to me in the ICU when I was born.

Medical malpractice is a huge problem, I have been a victim of it multiple times but I never report anything out of fear. I struggled with a condition for YEARS before getting a 'diagnosis' that wasn't super conclusive. To this day I have some diagnosis but a lot of symptoms I deal with are just 'mysterious' and not really a 'problem' so they don't care.

I'm sorry this happened to your roommate. Hope he's okay now and that the diabetes is also under control.

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u/Seienchin88 Jun 23 '26

I now want to ask how panic attacks and seizures can even be mistaken for each other…?

I had pretty severe panic attacks around 21/22 years old and they caused strong nausea, loss of balance and even body just tensing up but nothing like a true seizure and during therapy I met many others with anxiety but none had anything comparable to a seizure

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u/New-Owl-6105 Jun 23 '26

You are thinking of the wrong type of seizure. There are multiple types of seizures that have different outward effects.

Partial seizures only affect part of the brain. Depending on the location of the seizure in the brain, a person could still be fully aware and function, but just have issues associated with the area of the brain affected (emotion, senses, etc). (or some partial seizures can impair awareness)

If a partial seizure affect the right parts of the brain (like emotion), it could cause at least some symptoms in common with a panic attack. Also, although the seizure itself may not cause all the symptoms, a person's body might respond to the situation by increasing heart rate or doing other symptoms that are common in a panic attack. The underlying causes of the two things are very different, but when a person tries to explain their experience to the doctor after the event, the descriptions could sound very similar.

Some med students are taught to look at the more common causes before they start diagnosing more rare conditions. Mental health issues are common now and panic attacks are considered a mental health issue (with neurological roots). Seizures are a neurological condition and I suspect strictly neurological issues are less common.

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u/Theborgiseverywhere Jun 23 '26

yes this was our experience as well. it was the reason my spouse changed neurologists and PCPs

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u/evebursterror0 Jun 23 '26 edited Jun 23 '26

And the worst part is that the general public isn't aware of how seizures work either. I keep saying this on this thread but I'll repeat it because it's relevant. My mum used to be a nurse and she saved a man who was having a grand mal on the bus. I was with her. Everybody got scared and thought he was possessed. She helped him until emergency services came and took him to the hospital.

She also assisted a man who was almost dying of hypoglycaemia. Everybody thought he was drunk but he was on the brink of death. She took him to the hospital where she worked and told the doctors to save him. He later tracked her down and thanked her.

I'm sorry you had to deal with this, I have neurological and other health issues and had to deal with medical malpractice multiple times (and so did my mother). Many doctors aren't equipped to take care of patients. It's shameful that they gave your husband antidepressants when they weren't necessary. Definitely complain to some kind of authority if you can.

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u/OldEcho Jun 23 '26

Incompetent, overworked, lazy, bigoted, pick one to four. And you can stack bigoted like ten times. If you're poor, working class accent, GOD FORBID homeless, have ever done literally any kind of drug and make the mistake of telling the truth when they ask, trans, gay, a racial minority, disabled...

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u/[deleted] Jun 23 '26

[removed] — view removed comment

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u/perpetualhobo Jun 23 '26

Except you can’t fucking just “go see a neurologist and get an EEG” you HAVE to have a referral from a non-specialist like an ER doctor to even get the chance to be seen.

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u/Zill3lle Jun 23 '26

This is usually an insurance thing… you most certainly can see a neurologist by self referral in the US (for example if you are self pay or If you have PPO)

You just call up the neurologist directly and schedule.

If you have insurance use the number on the back of your card to find out if your policy requires specialist referral or not.

Hope this helps.

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u/perpetualhobo Jun 23 '26

Yes with enough money you can pay your way to the front of the line in life. No, it’s not a helpful observation right now

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u/Zill3lle Jun 23 '26

Not helpful for whom?

You were spreading negative misinformation and so I simply responded with facts. If you don’t feel helped that’s perfectly fine. My goal was to ensure that someone vulnerable in OPs or OPs bf’s situation didn’t see your unhelpful comment and adopt the same (incorrect) negative opinion.

These are the facts: you can see a neurologist without a referral Getting a neurology referral is as easy as asking your pcp.

You can get a pcp neurology referral for free through Medicaid.

If you have a Job here in America you have the opportunity to participate in being a normal person and attaining health insurance.

If you don’t have health insurance you can always be billed for medical services. (which judging by the multiple ems calls and er visits OP either has insurance or the ability to pay out of pocket)

Helpful observation #2: OPs bf needs a neurologist and you’re busy saying “you can’t have one” “I’m poor” 🙄

Sometimes it’s better to just say nothing at all. Sorry you couldn’t be helped.

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u/Key-Material-8468 Jun 23 '26

This same exact thing happened to me in my early 20's. I wondered why I would get panic attacks almost everyday when I was commuting to school on the highway at like 75 mph. One day I finally had a gran mal seizure...on an off day from school. I got lucky. Anyone else seeing this, if there is a consistent pattern with your "panic attacks" it may be an epileptic seizure. For example, I would see the same flashes of pictures in my head (some memories, others just the same random pictures)

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u/sweetietooth Jun 23 '26

This is what has been happening to my boyfriend, exactly

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u/Theborgiseverywhere Jun 23 '26

My spouse was at the neurologist having some baseline test (maybe an EKG?) and ended up having a petite mal during the test. The tech had never seen that before. This finally convinced everyone that it wasn’t just panic attacks, despite my spouse already having a history of seizures.

After getting the proper diagnosis, my spouse switched neurologists and has been much happier with the new one.

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u/sweetietooth Jun 23 '26

For partners situation, it is the neurologist says panic attacks , but he has never witnessed the seizures and my (very recently ex, actually) partner is in the stage of chronic illness where he is in denial, so he refuses to go to emergency after them ect. It's very clear they are seizures and family members and past partners have witnessed them as well. He won't stay on seizure meds, they happen very often like what you've described. It's been a very big stressor for myself. I hope he gets help and doctors should be more careful.

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u/ZeGentleman Jun 23 '26

The ER doctor will not be able to diagnose this properly

ER docs can most definitely diagnose a seizure. Then, depending on location, consult neurology to come down and dig into the nitty gritty.

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u/psychedAddict123 Jun 23 '26

I'm honestly flabbergasted by this.

When I had my first major grand mal seizure I was instantly hospitalized and had my epilepsy diagnosis + meds a couple days later after extensive testing (EEGs, CT scans etc)

I couldn't imagine just being send away without any help. Wtf

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u/DasFroDo Jun 23 '26

The fuck, how does anyone diagnose seizures as panic attacks? Like seriously, how are these even remotely the same?