Olfactory auras: How long do your bad smells last per episode??

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k2s4ever

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This has been an ongoing issue for me and I can't get a handle on it. I have probable SPS. I only have SPS. Never have lost awareness. Sole symptom is the onset of a burn smell. What is bothersome is that once the smell starts, it does not stop for quite some time. It persists for anywhere from 12-15 hours or longer. If the aura occurred in the morning, I will have the burn smell all day, go to bed, and when I awaken the next morning, the smell is gone. But if I get the aura late in the day. like 6 pm or later, I am looking at a 24 hour or longer occurrence of the smell. I am in an episode right now. Aura occurred at 6:15 yesterday evening and a night's sleep did not relieve it-I woke up with it persisting, so I am now looking at almost 28 straight hours. asleep or night, if I wake with it still there, it's as good as it never having left, and I know it didn't as I had awakened briefly middle of night with it still there. I can't possibly think I am having hours and hours of an ongoing seizure, but I assume the after effect of one. It just seems abnormal. I don't get the idea that other SPS people with olfactory auras have the burn smell persist for HOURS upon hours like this when they get it. On the bright side, I am having far less of these with a med change to Topamax (along with Keppra). Due to see neuro this week and hoping for an increase as I was just put on the Topamax 6 weeks ago. The auras are hugely reduced overall. The duration of the smell makes me think migraine which does get entertained too, but the abrupt onset of the aura leads my neuro to still speculate that E is in the mix and I could have both. The burn smell does get totally wearing of course.
 
IMHO, this is one for the neurologist to figure out - pretty complex. The smells are probably not pure seizure if they are lasting for a day. My icky smells that come out of nowhere usually last anywhere from 10 seconds to 3 minutes or so. Mine are usually chemical with an acrid undertone - kind of burnt or bitter but that's not really it. Sort of like burning rubber feels in the back of your throat.

It's entirely possible for you to have two things going on at the same time - a migraine aura and a seizure. (Seizure auras are seizures - just smaller ones.)

Here's some info on Migraine Auras: http://en.wikipedia.org/wiki/Aura_(symptom)

I have something related that does last for hours, days, weeks.... I smell something that is actually there, but it smells wrong. Like coffee smells like tuna, car exhaust smells like chlorine, my dog smells like flowers. (That last one is a good thing!) This isn't due to seizures, it's due to something else entirely, but I thought I'd mention it.
 
When I get a smell its normally like garlic, you know like when you can't wash the smell off your hands and it goes stale? That's the closest I can get to describing it. It normally lasts anything between 10 and 30 secs, and occasionally has been nearly a minute.
 
Thanks. Yeah, it occurs to me that it is both, but it is still very weird. The burn smell goes on very abruptly most of the time, often randomly, though sometimes it is precipitated by some nasal congestion, and sometimes after, I have some nasal congestion, but in the past, also could be triggered by an actual fried food smell, which has gotten better. But why the smell persists is what is weird. If it is then a migraine, it makes me wonder, is it a migraine brought on first by a seizure ,the aura then morphed into a migraine? So I have this combination thing going? The abrupt onset of the smell is what makes SPS be suspect, but this still is not a 100% given, and while I would like answers, mostly I just want no more of these auras. I could do without the formal label of E too, which as of yet I do not have, though as time goes by, I begin to figure who am I kidding, though, it could still maybe be a weird migraine deal, and I don't have a firm EEG saying E, just suggestive studies and symptoms, but bizarre too.
 
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For the record, my smell is a burn smell, like burnt popcorn, burnt wires, sometimes like chlorine, and sometimes like the seasoning packet from those Ramen soups. None of them are pleasant at all!
 
Ive mentioned that things smell different to me too-they arent related to an actual seizure,but I always thought they had something to do with my screwed up head-kind of like the quick visual hallucinations-all my weird stuff is so quick,I cant believe I actually remember it-What are yours from?
 
Mel, are you asking me? lol...

My sense of smell being constantly off is due to IIH - Idiopathic Intracranial Hypertension. In other words, the fluid pressure in my head is too high and it presses in on my brain. Don't think it's the same cause as you guys' smell problems because it's a rare disease - labeled one of those "orphan diseases."

The most common symptoms are severe headaches, papilledema (swelling of the optic nerve which causes blurry vision and greyed or blacked out vision around the edges), neck and back stiffness and pain, pulsitile tinnitus (whooshing in time to your heartbeat)...

But if you think your symptoms match IIH and it IS the problem, a lumbar puncture (spinal tap) measuring the opening pressure would find out. To learn more: http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension

If there is someone else in here with IIH, it would be an unlucky miracle. But would be nice for me to have some company with it.

Anyway, the IIH is causing lots of short-circuits in my brain. Smell being one of them.
 
And if you're asking me, my smells, well, the idea is that we're not really sure, but my neuro thinks they are due to SPS. I know that I am definitely not smelling anything in the environment. When this started on me 4 years ago. I knew it was physiological. I just thought maybe it was something in my sinuses, and then when cleared there, was referred to neurology. I do have issues in the left temporal lobe area; 72 hr EEG was abnormal. It didn't show epileptic waves, but did show spikes and such and left temporal lobe slowing.
 
Mel, are you asking me? lol...

My sense of smell being constantly off is due to IIH - Idiopathic Intracranial Hypertension. In other words, the fluid pressure in my head is too high and it presses in on my brain. Don't think it's the same cause as you guys' smell problems because it's a rare disease - labeled one of those "orphan diseases."

The most common symptoms are severe headaches, papilledema (swelling of the optic nerve which causes blurry vision and greyed or blacked out vision around the edges), neck and back stiffness and pain, pulsitile tinnitus (whooshing in time to your heartbeat)...

But if you think your symptoms match IIH and it IS the problem, a lumbar puncture (spinal tap) measuring the opening pressure would find out. To learn more: http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension

If there is someone else in here with IIH, it would be an unlucky miracle. But would be nice for me to have some company with it.

Anyway, the IIH is causing lots of short-circuits in my brain. Smell being one of them.

Wow-that is something. New one to me. Don't think that fits me. My sense of smell is fine. It only gets distorted when the aura kicks in, which also distorts my taste. But I will mention this to my neuro for the heck of it. Some of that whooshing sound I do get, but I also have arrhythmia issues as well, so hard to say.
 
I often wondered if my smells were from migraine also.They flip on and off so suddenly though.Anybody out there with migraine smells?Do they last as long as you have the migraine or is it abrupt and at what point do they happen?When you get smell does it mean you are going to have a migraine or are you already in it and the migraine is causing tricks-how about visual hallucinations with migraine?Im not talking about light patterns but actual formed items like someones arm,worms crawling out of a vase and a personappearing?
 
I get a chemical 'taste', as opposed to a smell, and it usually only lasts for maybe 15-30 seconds, though a chemical 'aftertaste' might seem to linger longer, especially if more seizures are in the offing. I'd describe it as tasting sort of chalky...like calcium? or like the coating of an antibiotic? or maybe even Comet cleanser?

To be totally honest, in some strange way I LIKE the taste?

I also often sleep better the night following my seizures (the last couple anyway) and feel wonderful the day following the seizures? And I think I read somewhere that seizures are the body's way of trying to correct something metabolically wrong in the brain? Could this be why?
 
Every 4-5 months it seems the meds start to wear off.Whereas my prior smell issues seem to emanate from somewhere I could never find even though I would crawl around the house smelling eery inch of the carpet[now theres a cute picture!]the incident yesterday and the day before was walking into a wall of smell that not only stopped me in my tracks,made my head spin,I turned and walked 2 steps and vomited in the sink.This lasted less than 10 seconds.But for a week prior,things arent smelling like they should.IMHO,I think they are like little blips in your brain.Just like not everybody gets the same symptoms with an illness or when they are pregnant.My hallucinations are different than anothers but that doesnt invalidate either of our seizures whether they are epileptic or psychogenic.I think docs try to categorize us if we dont fit into the prescribed norms of what they were taught.WOW-just realized Im rambling in a different direction!That is a BIG personality problem for me-SORRY
 
I wonder whether I will ever get full suppression of the aura. I keep a seizure diary. Even though I don't have the formal "E" diagnosis, it's more than likely SPS. So every time I get the aura, I log it, which includes the time and any possible trigger or anything I notice. It's good because it does show whether the medications are reducing the auras. Like so far in March I have had four occurrences of the aura. I see my neuro this week and will give him the report. He will see how many I have had since my medication was changed to Topamax. The fact that I am still having any occurrences tells me I will have a dosage increase. The last run of medication I was on, I was on the same dose for a while even with breakthrough auras the whole time. But since the Topamax is new in the last 7 weeks, I am thinking I will see an increase.
Today I am fine-yesterday I had an early morning, 7 am onset. I had been seeing a greater break of time in between the auras, so I was pretty annoyed, but it still as of the 27th, was about my 4th one of the month, which is better than some months, although in January I only had three and I was on Depakote ER!
 
Besides the wall of horrible smell,which I figure is an aura or simple partial,the past week as Ive said smells are so distorted and strong its hard to cook and eat -everything smells so bad-but ive noticed the tastes have become so nasty-too much nasty saliva and then the food itself is disgusting-no matter what it is
 
I read somewhere that a woman who had olfactory auras was able to stop her seizures by keeping a cloth or rag dipped in jasmine.

Since you also get olfactory auras, it possible that there is a scent that might interrupt your seizures as well?
 
Thanks epileric. Matter of fact, I have a little jar of jasmine oil as I had read about that. I've tried it to no avail. Got it 1 1/2 years ago. I still try it anyway.
I just saw my neuro for a check up and my Topamax has been increased and in 2 weeks, the Keppra will be reduced. However, one thing of note is that since the Topamax was introduced, I have noticed that fried foods are not setting off the aura, so this is setting the stage again more toward the arena AWAY from this being SPS. Which is making me wonder again, am I in fact, dealing with a migraine aura? But pretty much a migraine without headache? (although I have had killer intermittent headache episodes in the past, but hardly on an ongoing basis). The main puzzling thing is that the aura very often occurs quite randomly with absolutely NO trigger, and abrupt onset, which is what made the neuro suspect SPS in the first place. But then when I started to sometimes be triggered by fried foods (like if something is being fried on a skillet-french toast, oven baked pizza, anything baked in an oven, but anything in enough of an enclosed environment where the odor travels toward me), I was seeing a correlation. Hence, an actual environmental odor trigger is leaning toward meaning possible migraine, coupled with the fact that when I get these auras, I do get vague headaches with them. In November I had one killer episode where I had the aura for over 24 hours, ended up with a severe headache so bad that I had several vomiting episodes. (I know, gross). So again, sounding like there is possible migraine issue there too, hence neuro was thinking I just might have both, but now I am getting the idea he is moving away from E and more migraine, and Topamax covers both bases. ( I hope anyway he is thinking it is migraine!! ). I go back in 8 weeks. The one thing that does not add up too with E is that the bad smell after I get the aura lasts WAY too long. That's what makes me wonder.
 
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"My Smell"

I always described "My Smell" as when you smell ammonia and you tried to pull away from it.
I kept a diary when not on medicine and they would start either right before I fell asleep at night or right when I woke up in am and I would get like 6 -10 in that days time (they would last a couple of minutes each )and then 1/2 of the next day I might get 1 or 2, and about noon the fog would clear and I always said " I'm Back" because for that day and a half I could function but I was in a fog.
Most of the time nobody would be aware that I was having (what I always said "The Smell") because I was not engaged in conversion I would just kinda put my head down and stop what I was doing. Only one time was I in conversation with someone and they said I was in the middle of talking I stopped and put my finger up like wait a minute until it passed. I'm not really aware of myself but as soon as it's over I know that I just had "The Smell". I kept track of them for about 8 years and they started at about 38 days apart and 10 in 1 year and by the 8th year they were about 65 days apart and 6 in 1 year. They were pretty consistent about how many days apart they were, that by the 8th year I could almost know about when I would get the next day and 1/2 episode. What kept me going was they slowly were getting farther apart. I had not had a grand mal seizure in 15 years then a week after I had my son they started again, but I would always get "the Smell" at some point before them. So I have to be aware I might have a grand mal seizure any time I do get "the Smell"
That's "My Smell" story, it's cool to hear others talk about their "smell" because I am the only one in my family that get's it which is a good thing, because the others in my family with epilepsy don't know they're going to have a seizure where I do.
 
This has been an ongoing issue for me and I can't get a handle on it. I have probable SPS. I only have SPS. Never have lost awareness. Sole symptom is the onset of a burn smell. What is bothersome is that once the smell starts, it does not stop for quite some time. It persists for anywhere from 12-15 hours or longer. If the aura occurred in the morning, I will have the burn smell all day, go to bed, and when I awaken the next morning, the smell is gone. But if I get the aura late in the day. like 6 pm or later, I am looking at a 24 hour or longer occurrence of the smell. I am in an episode right now. Aura occurred at 6:15 yesterday evening and a night's sleep did not relieve it-I woke up with it persisting, so I am now looking at almost 28 straight hours. asleep or night, if I wake with it still there, it's as good as it never having left, and I know it didn't as I had awakened briefly middle of night with it still there. I can't possibly think I am having hours and hours of an ongoing seizure, but I assume the after effect of one. It just seems abnormal. I don't get the idea that other SPS people with olfactory auras have the burn smell persist for HOURS upon hours like this when they get it. On the bright side, I am having far less of these with a med change to Topamax (along with Keppra). Due to see neuro this week and hoping for an increase as I was just put on the Topamax 6 weeks ago. The auras are hugely reduced overall. The duration of the smell makes me think migraine which does get entertained too, but the abrupt onset of the aura leads my neuro to still speculate that E is in the mix and I could have both. The burn smell does get totally wearing of course.

That's the way mine are, the smells just go on and on and on. They might change, start out like the smell of incense, then can change to cigarette odor, then maybe an ammonia smell.

This last week I have been smelling this sickly, sweet smell and then it will change to a winter green smell. Sometimes it's strong, sometimes more mild but always annoying. The first time it happened I was tearing the house apart trying to figure out what it was but no one could ever smell it but me. I finally realized the odors were not real because they followed me everywhere I went. I then thought they were tied to sinus infection because they are much worse if I am sick but I now think any kind of illness increases my chances of having these seizures that present as auras.

I really thought my doctor would think I was nuts when I told her about the odors. She didn't, she said she thought they were all related to a stroke I had 3 1/2 years ago. She referred me to a neurologist. I saw the neuro last Thursday and she says they are most likely partial seizures.
 
Hi , I have complex partials and one of my auras is olfactory hallucination. Mine can come and go all day and can last for days on end which drives me crazy. Mine is like a sweet sickly chemical smell but when I was first getting it it was like the smell of rotting flowers. Stress triggers it and so does heat and temperature changes which is really annoying because It gets worse after a hot shower. Epileric dipping a cloth in jasmine is an interesting thought but it would be hopeless for me because jasmine triggers my asthma (Ha). Good luck K2s4ever. I hope you can get it regulated. I know how frustrating it is. I am still messing around with meds for mine but I have a huge stress load at the moment.
 
I sometimes think the strange smells are brought on by strong odors. It seems like my sense of smell is hyper-sensitive at times.
 
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