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Dogs demonstrate the existence of an epileptic seizure odour in humans (www.nature.com) similar stories update story
391.0 points by howard941 | karma 21177 | avg karma 5.11 2019-03-29 14:12:55+00:00 | hide | past | favorite | 158 comments



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Among people with epilepsy or who have children with epilepsy, its pretty common to hear discussion about 'seizure dogs'. These are either pets or specifically trained dogs that can predict when a seizure is going to happen, sometimes up to an hour before. They are somewhat rare but certainly a known phenomenon.

Apparently the training is a bit hit and miss, some dogs can do it and some can't. Training a dog to react to a seizure that is actually happening right now is quite a lot easier, and still very useful (e.g. train it to run to parents room, barking).

edit: also, one hears of scams where people claim to be able to provide seizure dogs but dont, so bear that in mind.


How do you even begin to reinforcement train a behavior you don’t understand the trigger for? That sounds fascinating!

I can understand how to train a dog if I know “Ok this person is having a seizure in X minutes, time to cue the dog”

But when you don’t know? Would you need an existing trained dog to bootstrap with? Who trained the first one?


Presumably this effect was first noticed without any training, when dogs who'd witnessed their owners having seizures made the connection and started to get agitated when another was imminent.

> More specifically, the training for SAD required three main steps. First a positive association is created between the scent of a seizure and treats in order to induce a conditioned emotional response.

The paper goes into a bit of detail on training, but it's a fair and interesting point: How do they get the seizure scent? I guess you could maybe take a sample just after a seizure, or a second person could do it if they were present and prepared to take it.


They took samples after/during seizures.

Samples of what, though? Sweat? Clothing?

Sweat.

I imagine you train them to react to seizures, and they figure the predictive bit out themselves, if they are able to.

How do you rule out the possibility that dogs cause seizures?

The patient already had seizures before getting a seizure dog.

Stimulus generalization comes to mind. IIRC Pavlows dogs at some point reacted not just to the food, but even earlier on him entering the room.

I doubt that they train dogs like "Steve's having a seizure. Good! Get that dog here."

I imagine that you do a preliminary training with faked seizures to get responses right and then hope (meaning: Train under real conditions) that the dog will react on a real seizure as well.


There is a scent, I believe it is a hormone but I don’t think it is what the body actually produces. If a dog reacts to it they can try to train it. If it doesn’t, they train the dog for something else or find it a good home. They also have people fake seizures. You can probably find some YouTube videos of it.

We have a dog that could do it. She could warn us about my partner’s seizures and fainting a few minutes before it happened. She could fetch help and apply pressure to the abdomen. (I say could because my partner had surgery a year ago and hasn’t had any seizures or fainting since then.)

I definitely noticed a change in my partner before seizures (but not fainting). The dog alerted on me once during a moment of high anxiety. I wouldn’t begin to argue WHAT the dog is actually reacting to, but the training methods people are using seem to work.


I wonder if the fake seizures confuse the dogs about what signs to look for... Might be a quantity over quality problem though (how would you train enough dogs without faking it?)

I’m not an expert on this so I’m just guessing but I think the fake seizures are more for training what to do during the seizure rather than the detection part.

Yeah... that website is a scam.

Seizure alert dogs have not been established to be effective yet. A claim of "100% reliable" is guaranteed to be woo.


I have heard of scams in this area so you might be right. I removed the link. I believe that such dogs do exist, but they are rare.

i believe dogs can sense a lot on their owners. that doesn't mean it's by smell though. people just pin it on smell often as dogs nose is very good. that doesn't mean it's the only sensor they have.

Exactly. For example, the person could be emitting an extremely high-pitched tone before the seizure that is inaudible to the Human ear yet can be heard by the dog. Sort of like a camera flashbulb.

Possibly, but I feel behavior is probably the biggest tell for dogs.

Their owner starts acting funny right before a seizure comes on.


I have a tendency to let frustration build up until I lose my temper. The issue is that I don't realize I'm doing it until I'm ready to explode. My last dog was so sensitive to that, that she could tell when I was starting to get angry before I would realize it. I would be sitting at my computer, struggling with something, and I'd feel her poke me in the leg with her nose, then I knew it was time to take a break. I think she could hear that i was typing 'harder' when I got angry, but it could have been any one of a lot of tiny signals. Point is, she was consistently aware of me getting angry before I was. I miss that dog...

> I believe that such dogs do exist, but they are rare.

it may as well be that every dog senses it, and it is our ability to communicate with and understand the dog rarely reaches the level necessary for the information to be actually communicated.


if there was a smell it would be easily detectible by humans using apparatus they have for such things as it would mean something of physical nature was traveling from these individuals into their surroundings...

I'm confused. TFA says "all dogs succeeded in each trial", and while there may have not been a lot of trials, that still sounds like grounds to believe it wasn't by coincidence.

I don't see how the fact that they didn't use a machine to smell negates their findings. Do you believe that every single time the dogs were correct was purely coincidental? Or do you believe that there's some other thing emanating from a tin containing the body odor of a person with epilepsy? I don't understand what your explanation for the results is


We use dogs in many roles due to their sense of smell. Police work, customs and border control, search and rescue etc. Using an apparatus isn’t a good substitute yet.

detecting and identifying trace molecules in air is not at all easy. there are some very specific detectors that work well, but nothing like a general electronic nose.

> Training a dog to react to a seizure that is actually happening right now is quite a lot easier, and still very useful

Aye especially where the dog puts their body between the seizing patient and the floor preventing serious head injuries. You can see the training here https://youtu.be/ZskqSLnMDRQ

Also, postictal sucks. Really, really, really sucks. It's one of those things words can't do it justice. Wikipedia says "it is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine, and other disorienting symptoms... often accompanied by amnesia or other memory defects". Having a trusted friend (like your dog) next to you during is very, very helpful.


Thanks for this link. Are you related to this? I’m interested in this part “Further studies will aim to look at potential applications in terms of anticipation of seizures.” And if you’re into this field, could you let me know how I can stay up to date with those further studies?

You're welcome.

> Are you related to this?

I'm not. You may be able to contact Amélie Catala, the first listed researcher, by way of the link supplied in the abstract.


I'm curious if anybody knows if there are good reasons why we can't or why it's hard to invent machines that could smell / detect particles in the air as well as dogs?

It's not that we can't. We're just now beginning to characterize this in dogs now. Next we need to identify the chemical signal and develop hardware to pick up that signal.

If it's the strength of a particular chemical signal -- like dogs can normally smell it, but it's suddenly stronger -- then that seems like it's going to make false detections very difficult. Training a machine to have an innate sense of how smell works under changing environmental conditions seems like it's going to be hard.

We have a long way to go before we are even remotely as good at nanotechnology as biology is.

I'd give decent odds we'll sooner grow a dog nose in isolation and interpret the neural signals directly than build a machine as good as a dog's nose. (And I'm not saying that's easy, either.)


The mental image of walking through, say, a security checkpoint that contains an artificially grown dog nose that sniffs you as you go by seems as good a writing prompt for dystopic fiction as you could ask for.

There was a British company which attempted to develop drug and bomb-detecting tools powered by bees. They would condition bees to associate the smell of a particular drug or explosive with receiving a morsel of food. Then load the bees into cartridges, put a dozen or so of the cartridges in a wand format and hand them to security staff at airports.

It doesn't appear to have gotten off the ground, I can't even find the name of the company any more.


Bear in mind that the sense of smell is different from the other four senses in that there isn't a separate sense organ in the nose. The Olfactory bulb is actually part of the central nervous system. So to "grow a nose" you really mean "grow a brain".

This is entirely incorrect. The nose has a surface called an olfactory epithelium, in which are buried the actual sensory apparatus. Olfactory receptor neurons in here respond to the odors themselves, and transmit the information to the olfactory bulb. The olfactory receptor neurons are essentially analogous to related structures for the other senses, such as sight (rods and cones) and hearing (hair cells).

I stand corrected. I shouldn't rely on 30 year old memories. This is interesting "There are approximately 1000 different genes that code for the ORs, making them the largest gene family." - wikipedia

It’s intersting how the sense can get damaged too. Imaging for the problem (anosmia) can be very interesting. https://www.mayoclinic.org/symptoms/loss-of-smell/basics/cau...

I know progress has been made decoding the nerve impulses directly for vision and sound, to the point that we can engineer machines that generate the impulses (pretty much the hardest test there is), with Cochlear implants being standard, off-the-shelf medical tech now [1]. The eye equivalents are harder, but prototypes are being built. (I don't think they're off-the-shelf tech yet, though.)

I have not heard anything similar about the olfactory nerves. I suspect they're going to prove to be much messier. Perhaps not necessarily "complicated" in some sense, but messier. But it shouldn't be impossible.

[1]: https://en.wikipedia.org/wiki/Cochlear_implant


Progress is being made. Twenty years back, I worked for a company that put a bunch of live cells into microtiter plates and use computer vision to see how they were responding to environmental stimulus. One of the contracts was with the military to detect battlefield biohazards. I've not been involved in some time, but I assume that this tech has progressed in the last twenty years.

> but I assume that this tech has progressed in the last twenty years

or completely shelved and waiting for you to connect the multidisciplinary dots.


>connect the multidisciplinary dots

That's what I had done 20 years ago. So one reason that I returned to software after doing graduate work in neuroscience was the frustration of keeping cells alive while you poke at them. These titre plates full of thousands of different cells pose a problem orders of magnitude more challenging. Perhaps now it would be easier - engineer cells with the properties you need using CRISPR/Cas9.


I imagine it's probably that it's prohibitively expensive to make one with the qualities required, which is reliable, mobile, can alert others automatically, with a long running time.

Dogs (some breeds more than others) have some of the strongest smelling capabilities on the planet. So much so, that some people theorize that one of the reasons dogs don't traditionally do all that well on the mirror self-recognition test is that it focuses on vision, and as animals that rely so heavily on such a strong smelling capability, it may throw them off (I guess the human equivalent would be if the test was audio only, or audio with a very fuzzy image. If you weren't already familiar with hearing your voice played back to you, how likely would you be to recognize it as yours?)


Living things are machines, they're just incredibly sophisticated biological ones ;)

My guess from having formerly been married to a chemist is that machine-based chemistry is one of the most difficult areas of science. Chemistry is still equal parts art and science in that the techniques that will give accurate scientific results depend greatly on the types of things being measured for. For detecting a particular substance, there may or may not be a cheap or viable detecting device that could be built, depending on whether that thing is normally detected by chromatography, reaction with something else, spectroscopy, etc. For example, carbon monoxide detectors are great and cheap. But I think it's probably just really case by case. Chemistry is just super hard to generalize or systematize. I used to ask her why they don't have Star Trek tricorder type devices yet that can universally analyze substances, and that was more or less her answer.

Edit: for the difficulty of machine chemistry, see also the Theranos debacle.


Carbon monoxide might be easier because it's one specific molecule, and the concentration has to be fairly high (comparatively) to be life-threatening. The paper mentions VOC (volatile organic compounds) which are probably harder to quantify. Detectors aren't always great either. I've worked in labs that didn't use helium detectors, because - at the time maybe - they weren't super reliable, but having them usually meant people would rely on the detectors instead of paying attention to the symptoms of a helium leak.

Smell/organic chemistry is weird, too. Some molecules have similar smells, despite being sometimes quite different. Many molecules have quite different smells, despite being not that different [0], edit: the esters table maybe shows that better, [1].

[0] https://jameskennedymonash.wordpress.com/2014/01/04/table-of...

[1] https://jameskennedymonash.wordpress.com/2013/12/16/infograp...


Oh yeah, I'd forgotten how weird smell in particular was. I seem to remember at the time that there were three competing theories for how smells are even perceived or what gives a substance a particular kind of smell, and each only explained a subset of smells.

For the helium leak, is one symptom a high squeaky voice, or is that at already really dangerous concentrations?


From what I remember, dizziness, headache, inability to concentrate, etc. You'd notice a big/quick release as the liquid helium boils of quite easily. A slow leak is more dangerous, in which case you might even get used to the higher pitch without noticing.

One symptom of a helium leak is that your iPhone might stop working: https://motherboard.vice.com/en_us/article/gye4aw/why-a-heli...

This happened also to the coworkers of a friend of mi e - occasionally everyone's iPhone in their office would stop working. Android phones still worked fine. Later (after this article was published) they found out there was an MRI machine downstairs.


Isn't carbon monoxide also a ridiculously simple chemical? Detecting complex molecules has to be a lot more complicated, doesn't it?

Also noses self repair. You can foul them with another scent for a while but eventually the receptors will recover.


The search space for which molecule or sets of molecules are being recognized is huge. There are at least 120 different receptor types, and the dynamic range of their detection thresholds is large too. So we're looking at perhaps a trillion different combinations in theory.

Plus the detection threshold can be as low as parts per billion, spread across 300 million receptors in a dog.

So just the mathematics of the search space seem like a pretty good reason why it is a hard problem in general.


The fact that an odor precedes a seizure is interesting. Implies that there is some chemical buildup of some sort which also might suggest new ways of detection, prevention or treatment.

It is a strange coincidence however that the seizure chemical is the same chemical that causes a dog to bark.

Well it's odor they can detect and distinguish, and then can be trained to either bark and or take other actions.

It’s probably just that the dogs can detect a problem and are barking out of empathetic concern or fear (if not trained)

Dogs, being social pack animals who co-evolved with people, are very adept at reading anthro-socio-emotional communication because tens of thousands of years of survival depended on and reinforced it. It's also likely that they're not consciously aware of what's wrong, but sense something is wrong because of an association formed by the distinct odor preceding a seizure.

Dogs don't need a chemical to make them bark.

This study doesn't establish that an odor precedes a seizure. They took the samples from someone who was in the middle of a seizure or shortly afterwards.

This study doesn't establish that, no. But there is considerable anecdotal evidence of service animals that can alert well in advance of a seizure, before the patient is aware of any prodromal symptoms.

(For example: https://news.ycombinator.com/item?id=19522755)


That's interesting but how do we know it due to smell rather than sound or other senses? I've read that dogs and other animals can also anticipate earthquakes because they can hear or feel the earthquake earlier than humans.

Is anyone familiar with any "electronic nose" systems and what the cutting edge of them is now? I've worked on some systems vaguely similar to theranos a decade ago around analyzing blood samples and contemplate those in airport bomb detectors. Any companies working on productizing these type of technologies?

There's quite a few diseases that can be smelled.

I think it's pretty interesting and often wonders if that's the reason some people have some kind of "sixth sense" when it comes to diseases.

https://academic.oup.com/jb/article/150/3/257/867730


Or, maybe, humans have the olfactory capcities but these sensations are not transfered to the consious.

That's what I was trying to say. The sense of smells really affects you in subtle ways. A positive smell can calm you and a negative one bring anxiety. I wonders if some people are able to intuitively "feel" diseases that way.

yes, i think our sense of smell is pretty good but we tend to ignore the contribution of smell into our conscious thoughts. sometimes when my dog sniffs at something in the house, i’ll go sniff it too, and will find something weird there as well. not only does my dog have a better sense of smell, she’s constantly consciously processing that data too, and alerting me about it. it’s very nice. =)

I'm on hormone therapy and my sense of smell drastically improved. That means that a lot of things are new to me and immediately pop into my conscious mind instead of getting filed up in the back of my mind.

Probably look like your dogs at times. Often I would go sniffing around the home or the office and find things such as forgotten food scraps, electronics heating up, etc. The most useful so far has been pinpointing mold issues.

I've noticed how some people smell drastically different and often wonder about their health and diet.



Oh my god, this happened to me too. I smell my old monitor now and it's pretty bad. I once liked the "smell" of old electronics powered up but now it's unbearable. My 60s vintage Zenith radio is one of the worst offenders.

Several such stories imply that if we are ever able to build machines that can smell things, we might open up an entirely new world of diagnostic tools for medical sciences. Though I am not sure how well we understand how smell works and I recently read somewhere that human smell system might use quantum tunneling so I would say such a system might be decades away if not more.

I am constantly in awe of my dog's snout. Evolution has produce a tool that detect odors in parts per trillion! His favorite game is "hunting humans" as I call it. I can go over a mile in the woods behind my house. And have no doubt my dog will find me minutes after my family unleaches him.

When another dog was sick with cancer, he showed interested in that area. I have no doubt there is untapped medical potential in this area.


A relative has one that can find tennis balls. It doesn’t matter how long they have been lost in a shrub or overgrown corner, she suddenly diverts, smashes in and comes out with her trophy. She doesn’t even have to be particularly close to detect them.

The sense of smell is a sense for the identity of (typically small) chemical compounds.

So there absolutely are machines that can "smell" things. E.g., mass spectrometers, or in a broader sense any technique that can detect specific molecules.


But detecting compounds is only a small part of the equation. A significant portion of a dog's brain is engaged to analyze scent data. It's like how we've had CCDs for a really long time but being able to detect objects in the image data they capture is relatively recent.

Weirdly enough when I was epileptic ('12-'17, couple of brain surgeries fixed that up) the auras I would experience were an occasional olfactory hallucination. I can't imagine there's any physiological connection outside of the brain but it's still a weird coincidence to read about "smelling" a seizure.

This is fascinating. If you do not mind me asking, what was the smell that you experienced?

I don't remember anything specifically but I do seem to remember that it wasn't any one particular thing. If it was immediately pre-ictal I wouldn't have been likely to remember at all. I had two generalized seizures before I made it to my neuro and started Depakote (bad stuff) and then just had complex partial seizures. I'd just zone out for a half a minute or so with no memory of that time. There were times that I was walking down the street with coworkers, had a seizure and dropped my lunch and just kept walking along the whole time.

Yeah I always have a metallic taste in my mouth before a seizure. I wonder if it's related.

From what I've learned auras can manifest in all kids of manners and that's one of the prevalent ones. I have a few friends with migraines and that's common for them as well. There's a really, really strong correlation between the mechanisms at work in Epilepsy and migraines.

to me that's a pretty good indication that there must be hormonal fluctuations before a seizure. Sorry to hear you're suffering from the condition, it must not be pleasant.

Old time docs would sometimes sniff their patients (in private places) to get clues for a diagnosis.

And taste their pee.

Super interesting.

I also just want to note to people that seizures aren't always the kind that they're portrayed, with the person falling to the ground and shaking.

Couple years ago I had these events start which turned out to be partial temporal lobe seizures. I would get a big flash of deja vu, my right arm would tingle starting at the shoulder and creep down to my fingers for about a second, and then I'd get hit with a tiny thump in my head where for the next few minutes I couldn't comprehend. I could still think, and I was able to tell people I was talking to to hold on, and give me a little time before we could start talking again. I had one while reading for example and the words got completely meshed together, where the characters were combined in different orders and didn't look understandable at all. I was wondering why the hell I couldn't read, and eventually the words started coming back together.

The reason I'm saying this is that it took more a while to realize these are considered seizures. I didn't know what was going on and didn't think it was anything much until they started coming one a day and that thump getting a little bigger each time.

This kind of seizure was listed in the paper as one of the test subjects. Someone I know was the one to tell me that those events might be a seizure, and I don't know how much longer it'd have been for me to come to that realization on my own. So maybe me saying this can help someone else. That, or get a dog that can smell seizures like in the paper!


Oh wow, I get that. You scared me. I need to go to a neurologist quickly then, I guess.

Your symptoms sound like those of a transient ischemic attack, which commonly preempt a stroke. You should take these very seriously.

The symptoms described are a very typical presentation of partial seizures as well. Deja vu is a common symptom, but it heavily depends on which part of the brain the seizure occurs in.

TIAs are actually a very common cause of dementia as well.

Something that you should know is that simple and complex partial seizures (also sometimes called focal seizures, or less formally "auras") like this can and do generalize into tonic-clonic (formerly: grand mal) seizures. You should definitely see a neurologist about this, ESPECIALLY if it's new and the frequency is increasing.

My wife started getting partial seizures much like during her second pregnancy and they culminated in a generalized tonic-clonic seizure. Her OB mis-diagnosed them as vasovagal syncopy, which is a very common phenomenon during pregnancy.

Based on getting a diagnosis it sounds like you've seen someone about this. Please, anyone out there who has similar symptoms, get it checked by a neurologist!


As someone who has lived with complex partial temporal lobe (deja vouz) seizures my whole live, I'll throw in my (perhaps arguable) 2 cents: a neurologist will only be able to confirm to you what you already know. They will NOT be able to tell you whether your seizures "might evolve into grand mal seizures". Epilepsy is just too unpredictable and unique to each person.

What a neurologist will do, at best, is give you an fMRI to pinpoint what part of you brain has "abormal activity". (I also have deja vous seizures, and in my case it was my right temporal lobe.) Which, as cool as that may be, is completely useless as far as fixing the problem. If your seizures aren't causing distress in your life, the neurologist will essentially just tell you to never drive or operate heavy machinery, and send you home.

If you do feel that your seizures are causing distress in your life, or might be putting you at risk of harm, then yes, you should definitely talk to a neurologist, because there are medications that may be able to help.


Could you expand a bit on what happens during "deja vous seizure"?

(I know what deja vous is like of course, I just have no idea how it fits in with any kind of seizure)


Not the same person, but someone with diagnosed epilepsy that seems to match the profile.

I've had, on occasion, days where I would experience 50+ déjà vus that felt like moments from some past, very vividd dream I had many years ago -- even if those moments came from a recent movie I had never seen before.


I get deja vous feelings once a month or so, and I don't really like it... sometimes I'm not even sure if it really did happen before or not - 50+ times in a day sounds horrible!

Yeah. I had a similar experience. I only learned the small, random "blips" I was having was epilepsy after one finally evolved into a full-on seizure and I woke up to a bunch of paramedics standing over me. Unfortunately I denied it and refused to take medicine until I had another grand mal seizure and was injured really badly.

My brain started malfunctioning about 6 months before that. I would get this sensation where I couldn't understand or produce language for 5-30 seconds at a time. It seemed innocuous enough, and people actually told me it was normal, that they forgot words all the time. I don't have any physical or emotional manifestations during those auras (small, partial seizures)

I wish I had gone to a doctor because they would have probably run an EEG and put me on epilepsy medication earlier. Medication can actually slow or halt the development of epilepsy. Unfortunately, these small seizures reinforce themselves over time (epileptogenesis) and your brain essentially learns to have seizures.


Exactly with mine. The first times I had these I don't remember them, but the people around me did. Where I'd just tell them to hold on before I could understand them again. Took until I was getting them daily where the hit of the seizure was enough to be noticeable.

Temporal lobe seizures are interesting too because for me, it was just the word issues. I had one while riding a bike when I still didn't know what was going on, and I kept going being actively confused, like I knew something odd was going on with the word / thinking part of my brain, but nothing at all physical.


I was having 10-30 a day for a while near the end there. Fortunately, my auras aren't very disruptive. No memory loss, no physical, emotional, or behavioral manifestations. I simply lose the ability to speak or understand language. It's a different story if they spread or generalize though.

After I started medication, I continued to have seizures for a year, including one grand mal. Unfortunately, I was in the unlucky 30% group that doesn't respond to medication. I tried 2 drugs total, even at high doses.

All of the sudden, I stopped having them for 2 years. I got my confidence back. I could do anything - drink, drive (not at the same time lol), not sleep, handle stress. Nothing really phased me, I figured I was "cured". I took a minimal amount of medicine with no issues. Epilepsy can spontaneously go into remission for a lot of people.

Then one day, I had an aura, and just like that, it started up again. Daily auras and one grand mal. A higher dose of medicine did nothing. A year later, they suddenly went away again with no changes to lifestyle or medication.

I'm so confused why this is happening. No one can tell me. Normal brain scans (no tumors or other abnormalities thank god), abnormal but somewhat inconclusive EEG in regards to where they may be coming from. One pointed to left temporal lobe, another was somewhat inconclusive. No, they're not psychogenic.

Anyway, there are some really smart people doing epilepsy research, particularly with regards to cryptogenic focal epilepsy. I'm looking forward to the advances they'll make. Now, you can do minimally-invasive brain surgery via laser ablation which is pretty neat. I haven't gotten the full work-up for surgery, but I'm probably not a candidate since they don't like to operate on any part of the brain that has to do with language. I want to wait until some more research comes out. The autoimmune avenue looks possibly promising. They're doing a lot of genetics research as well. TBD.


I had a sort of similar "weird" seizure as a one-off: https://dmd.3e.org/2005/11/aphasia-and-back-sunday-20-novemb...

The interleaving of external and internal observation made this a very interesting read! Thank you for writing this.

I had something similar happen to me to: First, a feeling of doom and a strong headache on the left side of my head. Then a tickling sensation in my right hand, then numbness. Then, within minutes, I lost my words.

I could still think normally - for example I reasoned that it made sense that my right body side was affected since the left side of the brain, where the language area was located, controlled it. So everything else felt and functioned normal. When I found words and wanted to speak them, they were often switched up.

The human brain is fascinating. Have a look at this:

A review of 80 years of memories inducted by electrical brain stimulation http://gpe.ups-tlse.fr/memstim.php

>The patient reported hearing the theme music from film Star Wars, while at the same time "seeing birds" and feeling like "going through a tunnel."


The last test before my lobeectomy was a SEEG surgery. (I had 11 electrodes 3"+ long shoved directly into my grey and white matter) The last part of the test is stimulation. They're applying stimulation at different voltages, amperage and frequencies to very specifically triangulated ares to be sure there aren't any cognitive, motor neural or autonomous functions in the parts they want to resect. I had to describe what I was seeing, feeling or hearing for each stimulation. It was absolutely bizarre. For instance, during one of the settings I had no muscle tone and struggled to lift my arm to point at the TV, another I had an increasing frequency sweep from one ear to the other. It was neat-o.

I have partial temporal lobe seizures as well. My primary symptom, which is visible from the outside that is, is that I lose the ability to use language. If I try talking, it just becomes a mangled mess of words in English and Swedish. I also can not understand what other people say.

It's a very peculiar feeling to be conscious and fully aware of what is happening, but still completely lose such a fundamental part of my brain functions.


Great point on being conscious and aware of it. For me the entire time, I knew something funky was going on, but I was wondering why. Like I said in the top comment, words and letters go in shambles, but I'm able to think and know that it was an odd event.

Sounds like what this poor woman experienced while on air?

https://www.youtube.com/watch?v=AVKDm4PhEwI


Yes, I’ve seen that clip before and thought it might be what I’m having. IANAD though.

I was diagnosed with temporal lobe seizures when I was a teenager. What you described is very similar to my experience ... with the aura as you sense the seizure coming on, followed by a period of disorientation and short-term memory loss. As I got older, I learned to sense them coming on, and at times felt as-if I could almost fight them back and prevent them from occurring in some instances, but maybe that was just me pretending I had more control over them than I actually did.

When they did occur, I'd find myself "detached" from whatever environment I'd been in, and then struggling to re-engage with those around me. Most-strange was that I found in some cases I'd not only forgotten memories but also feelings I'd had for others. Try re-learning that you love your girlfriend after a seizure.

I went through numerous EEGs, sleep-deprevation EEGs, MRIs and a slew of other tests and was able to regulate the seizures using medication. But it did impact my life. It prevented me from pursuing a career that required a clean bill of health despite having my condition under control with medication.

Later in life, when I was planning to have children, I worked with my doctor to reduce then eliminate my medication. Though there was no indication that it would cause a problem, it wasn't something I wanted to risk. I've been off of the medication for about 10 years and seizure-free for over 20 years - long enough where I've stopped keeping track.

I have no explanation for why I no longer have these seizures but I feel fortunate that it's something seemingly very much in my past.


For me, when I looked up online and saw my symptoms were pretty much exactly temporal lobe seizures, I went to see a doctor at the Mayo Clinic (I'd tried a local one but I had to see a normal doctor first before a referral to a more specific one and that process was not the best) and the Mayo doctor did an EEG, MRI, and pointed at the tumor that was causing the seizures.

The medication is a huge problem, considering how many side effects there are and trying to find the right one is so difficult. I've very jealous that you were able to get off the meds.

These types of medical problems seem so random and crazy things can happen. I always wonder what it'd be like if we had these problems 50 years in the future when the knowledge of seizures and medicine has made much more progress.


Please. If you're having medical problems, consult a doctor. Don't let hacker news speculate a diagnosis like in this post. And don't get a dog to detect your seizures.

Finding the right kind of mental health doctor without going bankrupt in America seems practically impossible for anyone except highly paid individuals.

I have no doubt that you meant well and have good intentions. Nonetheless, your comment is insulting to its audience. You are assuming people are too stupid to take care of themselves and need this advice. Please reconsider before making obvious suggestions that make assumptions about the targets intellect and ability to make their own decisions.

Open discussions of health issues and understanding that one is not alone can be both encouraging and directly helpful in pursuing a better diagnostic outcome.


+1 on consulting a medical professional.

That being said, I'm sure there are online forums for doctors out there like HN or StackExchange or Reddit with their own hilarious troll culture.


Most people have no idea what the majority of seizures are like. I certainly didn't, but I wish I did. Most people (55%) unfortunately only go to the doctor after they have a grand mal, meanwhile they've likely been having partial seizures unknowingly for some period of time. Getting checked out early can halt or delay the process of epileptogenesis, which could hopefully result in no, or less severe seizures. https://en.wikipedia.org/wiki/Epileptogenesis

Convulsive seizures are also very dangerous, and often result in bodily injury, hospitalization, status epilepticus (a long lasting seizure which may result in brain damage), or SUDEP (sudden unexpected death in epilepsy)

Researcher Jacqueline French regarding delays in epilepsy diagnosis: https://www.youtube.com/watch?v=muPWaW-1Bqk


Definitely. This should really be the top comment!

I think you misunderstood jackschultz's post. They were encouraging people to seek medical treatment if they encounter symptoms similar to what jackschultz experienced.

Isn't that the point of the comment you're replying to? A phenomenon originally dismissed as just being an extreme version of something that happens to everyone, turns out to be something that a neurological consult was eventually needed to identify, that required prescription medication and that could have been prevented by getting that medication sooner?

Do you have the deja vu experience every time? I have noticed that I get that a lot when I'm stressed or sleep deprived. I always thought it was just som random brain event but could it be a symptom of some kind of disorder or damage that only surfaces during physical low points?

It was a deja vu feeling every time, but also involved other things after, like the tingly arm and the word confusion. Also, I could tell there was a difference between the seizure deja vu and the "normal" deja vu. I don't want to be the one to say don't see a doctor because of it, but I had much more going on and had had those before.

Yeah, I totally get that. I haven't experienced one in a while now so my strategy is to avoid low points for now. Thanks for the reps.

Some relevant detail that you learn only after having visited with lots of neurologists:

- The accepted explanation seems to be that our brains have a seizure threshold. The idea is to try to keep your brain below it, and to not cause it to become lowered.

- Many (most?) folks with epilepsy have "triggers" or activities or situations that increase the likelihood of seizures. You would think of them as lowering your seizure threshold.

Stress and sleep deprivation are common triggers. Stereotypically, flashing lights are a trigger for folks with photosensitive epilepsy though you should be aware photosensitive epilepsy is quite rare compared to the overall incidence of epilepsy.


Yes, even certain odors can set off a seizure. Bleach being a common one for those triggered by smell.

Former Epileptic (brain surgeries in '17) here. After I had two generalized seizures in my sleep (good thing I was living with someone at the time or I'd have never known) I met my local neurologist and was put on Depakote.

From there out I had complex partial seizures and would simply zone out for a minute, give or take. If I was around my girlfriend or coworkers I told them to let me know otherwise I'd have no idea that I'd had a seizure aside from occasionally peeing myself a bit. Incontinence regularly correlates with seizures.

I mentioned this elsewhere but there was one specific time that I was walking back down the street with coworkers, dropped my sandwich and kept walking. One of my buddies caught up to me, handed me my sandwich and that 30 sec. or so was just gone even though I kept walking down the sidewalk.

I was right temporal focal and have the pathology report on the hunks my surgeon cut out on my wall. The photo of my post op MRI with noticeably less brain on one side than the other is a great conversation starter.


Wow I thought this was normal. I've been experiencing this for years. It's not a frightening experience at all, and hasn't been getting worse. All kinds of odd pops, tingling sensations, and flashes of deja Vu. One time I had about 20 deja Vu experiences in the course of 10 minutes.

Definitely not a normal or regular experience.

Do take it seriously. SUDEP [1] is a serious condition. My partner died from it a few years ago.

[1]: https://en.wikipedia.org/wiki/Sudden_unexpected_death_in_epi...


Interesting stuff. My grandmother has had seizures for decades following a head injury in a softball game. Her and my grandfather at one point rescued a Great Dane mix and over time he would begin to lean on her before a seizure would come on and would then stay by her until she came out of it.

I only read the Abstract, but it might also be an unusual change in odour that the dogs detect instead of a specific "seizure-odour".

I find this piece of evidence fascinating. I guess how many other conditions have a specific odour (or are associated with odour changes) and if there will ever be an artificial way to promptly recognize them. I apologize for my grammar, English is not my native language.

Off-topic but your post is grammatically perfect as far as I can tell. No need to apologize.

Whoops now I feel dumb, there was one small issue. Just swap “wonder” for “guess” and you’re good.

After quickly scanning, it seems that they tested against "calm activity" and "physical activity". But not against "feeling unwell". This seems a bit strange because it would mean that the marker could still be very unspecific (and may perhaps have little to do with seizures).

As a search and rescue volunteer, I have had a number of fascinating experiences with trained scent dogs. I thought scent dogs only really worked in the movies, but watching them work to find humans lost in the woods was an eye-opening experience.

I watched a dog in training follow a 1km scent trail that was several hours old. This dog was not even fully trained for the activity and followed every footstep to the subject.

They really do navigate with their nose, as well. I was the subject for another exercise, and I watched a dog look almost straight at me, not see me, then pick up my scent and follow their nose straight to me.


that's really cool. We do "nose work" with our dogs just as a game for them. Its super fun to watch them find treats and toys we hide for them.

What I was most surprised about when we started is how the game sort of wears them out almost like a good run at the park. (we have 2 aussies and 2 silken wind hounds)


Considering everything happening in our bodies has to have a chemical component, is it really that surprising?

Sometimes medicine strikes me as "we discovered this completely obvious thing we could have gotten to from first principles but decided to ignore since our detection methods were not good enough and we were not paying attention to the signs".

Speaking like a complete outsider, please educate me further.


Not every chemical component has to have outward signs, though?

Yeah, the brain is pretty well isolated so I don't think it's totally obvious that this should be the case.

Exactly. Seizures represent massively synchronized electrical activity, so it’s a bit surprising that they’re associated with chemical changes big enough to be detected outside the body.

We do know that this electrical activity is controlled via ion channels and other chemical mechanisms. So a neuroscientist could well have guessed that this might be the case.

But we have all sorts of hypotheses about what “really happens” in the brain. It’s such a fantastically complex system, though, that they’re not too useful for extrapolation in the absence of data.


I find it extremely hard to believe that something like a seizure wouldn't create any changes in the hormones of a person that's about to have one. Apparently it's not that much of a foregone conclusion as I see others have replied saying for them it's just an electrical reaction in the brain (which I can't agree with in principle, that's not how the brain works, most brain activity is chemically mediated).

Dogs' connections to their humans are amazing. While I work, my Australian Shepherd senses when I am stressed (even if I am not outwardly displaying it), comes over to me and puts his paw on my leg.

i have two Aussies - they're great and super smart.

after reading the book "chaser" - I trained one of them to distinguish several toys by name similar to what he had done in the book. it was a lot of fun and now he's always bringing me toys to play with. Interestingly he brings them at very specific times of the day when I'm most likely to play with him: morning while making coffee, and evening while cleaning up the kitchen.


I'll check out that book. Ours knows a couple of his toys by name but it would be fun to teach him more.

How does someone with internet access learn how to train dogs for things like this? All I can find on youtube is how to train my dogs to do silly tricks. I'd like to know how seeing eye dogs, therapy dogs, police dogs, and other types of professional dogs are trained.

Is there a word for when a breakthrough is made and people aren't surprised because they thought we knew this decades ago? I bet the Germans have one...

I am certain I'd heard of service animals that could tell a seizure was about to happen.


I have anecdotal first-hand experience with a dog who smelled cancer - or at least something very wrong with their health - in a loved one, and there seems to be other anecdotes, too [1].

My family member already knew she had ovarian cancer, but when we went to visit a friend's house with a dog she had never met, the dog acted in ways that the owners were amazed to see. The dog usually was a ball of energy, running all over the place, but when my family member with cancer sat down, the dog was extremely gentle and wouldn't leave her side. The owners said this was not at all typical behavior of their dog.

[1] https://www.health.com/ovarian-cancer/dog-detects-owners-can...


"we hypothesized that there may be a seizure-specific olfactory component that would be common to different individuals and types of seizures"

Vague & untestable. This is not a scientific hypothesis because it's not falsifiable.

It's missing a suggested explanation of the phenomenon. What happens between the seizure and the smell? Magic? Fairies? How could a seizure cause an odor?

The study fails to establish that the dogs are relying exclusively on odor. For all we know there could something else happening. For example, we know dogs can sense magnetic fields. What if the seizure patient releases some kind of ferromagnetic material which the dogs can detect magnetically?


It is falsifiable. E.g. you could sever dogs olfactory nerves and repeat the experiment.

You seem to be confusing "this is not a sufficient test" with "this is not testable". And not knowing the mechanism does not make something unfalsifiable. (I mean, most phenomena are discovered before any mechanism!)

A similar story is Oscar the Cat, from an advanced dementia ward named Steere House in Providence, RI. Amazingly, the cat was able to smell death, and would hop up onto the deathbed and wait as the person passed. I knew the cat personally, it was not friendly, and many family members attempted to bar it from entering a room, and Oscar would scratch insistently to get into said room.

While one physician was monitoring the cat's predictive capacity, he noted a streak of ~20 successful predictions of death by the cat.

https://en.wikipedia.org/wiki/Oscar_(therapy_cat)


Ironic that in an earlier time the cat would probably have been killed for "bringing death"

This is the most advanced domestication function yet! Just think when humans utilized dogs for just barking at predators who came near.. and now they can detect tiny particles in the air for us.

"As we focused on ictal odour and not on pre-ictal, we did not make assumptions on seizure-alerting abilities of dogs, or on the timing of such anticipation, in this study."

Would be far more interesting if they could get it to work before the seizures. It's not terribly surprising to me that they can detect post-seizure odor, it's a pretty violent physiological event where I'm sure all sorts of things get secreted. It would be remarkable if they could pick up on a pre-seizure odor like how is described in the introduction....


Interesting. Many years ago I was on a bus. Suddenly I smelled a very strong distinctive unusual smell. Next thing the guy in front of me was on the floor having a full grand-mal. From this experience, I had assumed that seizure odour was a known thing. Apparently my assumption was wrong.

Was useful to read. I became a dog owner too recently and try to follow all useful info. Just read about best food for small breed puppies on https://petstiger.com/best-dog-food-for-small-breed-puppies/ to keep my pet healthy. I think owning a dog is a big responsibility.

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