Can certain smells affect your threshold with epilepsy?

[Edward183]

Hello, long time registered member here though I haven't been on the forum in months.

First just a paragraph or so on my story. I have partial seizures, so I am fully aware when are coming on and I am conscious throughout.

I started having seizures in October 06 and it was a regular thing until December 07 when I started taking 3 epilem pills a day. I had one seizure after that since last night in August 2008.

So I was extremely happy as to how my progress was going, and as it was over a year I thought I had it firmly under control.

Now onto my question. I tried a new aftershave wednesday and the smell really got to me. From about 7pm to 2am I had these auras and tremors of the muscle when I had my seizure at 2am. I firmly believe it was this smell that brought it on and was wondering if this can be accurate or not.

Also another question. It is quite complex describing what auras mean to people, they don't really understand in the sense of my feelings. But I know that I am lucky in the sense I have this warning and others don't.

Thanks
Edward

 

[Nakamova]

Absolutely -- smells can definitely be a trigger, just like lights or sounds can be.

 

[Edward183]

Thanks. I got that as a christmas gift as well! but I will throw it away.

I am still taking 3 tablets a day as I have had no seizures for over a year now until last night.

Sometimes I get auras but I take an extra tablet (my doc said I could take up to 4 in certain circumstances but no more) and it stops.

The tablets must be working as when I do get these auras they don't go on to become seizures.

I definitely know I am one of the lucky ones around here, and I am thankful for that. But at the same time annoyed that after a year-18 months with no seizure I have one.

 

[Nakamova]

Well the good thing is that you have a pretty good idea of what caused it! And as you say, aftershave is pretty easy to get rid of. Fluorescent lights are a bit trickier.

Take care,
Nakamova

 

[Edward183]

True flickering lights can also cause problems as well.

Just damn annoying it happened after 18 months.

 

[boolscott]

Smells never triggered my seizures, but I often had an extremely strong smell as an aura.

 

[k2s4ever]

My SPS is olfactory auras only. I smell a burning odor all the live long day. It turns on abruptly but then persists. I have however, on some occasions, seen certain smells bring it on, such as cigarette smoke, or smoke from something be fried on a pan or skillet. These external smells do not trigger the olfactory aura 100% of the time, but they have some of the time. I used to get the burn smell and it would subside within an hour or two. Not anymore-now it persists all day, only being gone when I wake up, to then start all over again within a few hours of waking.

 

[Ness]

I also have the burning smell which can last for hours. It can be brought on by the smell of cigarette smoke, sometimes by the smell of burnt microwave popcorn and sometimes it just occurs. When it happens at work, I know I need to go home and take a long nap.

 

[flinnigan]

I used to get them all the time when I went into my lower level living-room. I had one of those plug in air fresheners. It had a lavender odor I get dizzy and nauseous just thinking about it. I thought it was just a coincidence until reading this. We no longer live in that house so goodbye to that trigger.

 

[k2s4ever]

I also have the burning smell which can last for hours. It can be brought on by the smell of cigarette smoke, sometimes by the smell of burnt microwave popcorn and sometimes it just occurs. When it happens at work, I know I need to go home and take a long nap.

Actually, one of my main descriptors of my olfactory aura smell is that it is like smelling burnt microwave popcorn all day! And at work, there was a fairly recent rash of people burning their popcorn, but all those times, I had already had the olfactory aura anyway, and lately, not a day goes by without the aura, so it's like, what's the worry-already have the aura! But occasionally, the aura does its abrupt kick-in in the afternoon. And with my luck, it will be a day that the popcorn really does get burnt, and then I will get the double dose effect. That happens too, it's burnt popcorn on top of burnt popcorn for me!
Migraine people have the smell sensitivity too, so I am exploring if I also have migraines, but gosh, my E kin here seem to show the same type of olfactory stuff, so I am thinking I can't escape that I do have E! I am trying to learn more about differential diagnosis, but as I have mentioned in another thread, I have an EEG that does have sharp waves and left temporal lobe dysrhythmia, so I am thinking SPS continues to be the deal for me.

 

[Brent]

As several people have mentioned, yup, smells can trigger. For me, it is the smell of coffee, especially mocha. It has never triggered a SZ directly for me because I find the smell so objectionable that I avoid it immediately. It definitely puts me in a state wherein I am more likely to have a SZ. I can't describe it, it is kind of a low-level pre-seizure that I get sometimes that can last for hours. The smell of coffee (and a number of other things) can get me in that state. It usually precedes a major seizure.

For me the combination of bad florescent lighting and the oscillating hum of a grocery store's frozen food section is pretty much an instant trigger.

-B

 

[k2s4ever]

well-here I am a year later. on Depakote ER along with Keppra to treat the ongoing olfactory aura battle. Depakote has done awesome getting me down to as little as 2-4 or so auras for a couple months...
...but, it's on the rise again. December 2010 I had 9. Depakote was added last March or so in the hopes that if this was migraine related, it would address both possibilities. Still really not sure, but still suspect this is more SPS than migraine.
but the reference to grocery store freezer fans is interesting: my auras occur abruptly and randomly much of the time, but smell does seem to be some factor, and now, I have had the aura at least three times at my local grocery store. Twice, in the same exact location in the store. Today, different part, but same store. And I was afraid to go today but needed something. I've been avoiding the store when I saw I had the aura three separate times. I thought I was being superstitious, but now today, I was okay, aura free, and POOF, got it at the store. Coincidence?? I wasn't right near a refrigerator section, although one was about 20-30 feet away, just I wasn't standing literally in front of it when the aura occurred, but wonder if it could be the overall scent in the store? Very annoying, and now I definitely don't want to go in there unless the aura has already occurred, which I then have the persisting burn smell that my aura produces anyway. This is too weird.

 

[Endless]

Smelling weird stuff is a seizure all on its own. "Auras" are seizures. I have olafactory seizures about once a week or so. They are when I smell something awful when there is nothing to smell. All of the smells seem to have something in common - an acrid undertone. You know, those smells that are a little bitter and stick in the back of your throat (when they are real), like burning rubber or an electrical fire.

I don't know if this next thing is a seizure or not. For the last few months my sense of smell has been off. It's not like there isn't anything to smell and a smell pops up. It's my brain not smelling things right. Auto exhaust smells like chlorine. A prefectly yummy italian dinner smells like old cigarette butts. Etc. I have no idea what to think about that.

 

[flinnigan]

I spent a year with Big Red gum or cinnamon Altoids in my pocket they were the only thing that over powered the bad taste.

 

[Brent]

[...] but the reference to grocery store freezer fans is interesting: my auras occur abruptly and randomly much of the time, but smell does seem to be some factor, and now, I have had the aura at least three times at my local grocery store. Twice, in the same exact location in the store. [...]

Has it really been a year? Wow.

I don't know if your experiences in the grocery store are coincidences or what the trigger might be, but I know that for me it is most definitely the oscillation of low-frequency humming and bad fluorescent lighting. There is a particular frequency that some refrigeration units make and also the occasional idling truck or something similar.

I have a SZ alert dog who is so keyed in to this that she will steer me away from areas with these sounds and/or lighting long before I detect them. Occasionally a delivery truck idles outside my office that has triggered a couple of seizures. Anymore, when she hears that truck coming (about 5 minutes away), she will get antsy and prod me to leave.

Here's the funny thing about stores though. For me, I don't have to necessarily be in any proximity to the source (i.e. the refrigerated section). There seem to be acoustic avenues that will carry the sound across the store. Some aisles (or combination of aisles) will do this efficiently, and some won't. My dog will actually direct me to the nearest "safe" aisle. To my ear, I can't really detect the difference but moving to a better place in the store has stopped more than one SZ onset for me.

Of course, bad fluorescent lighting is another story, but I've found that the natural light at the front of the store improves this.

-B

 

[sbncmo]

I get that burning smell or a vinegar smell a couple of times a week. My seizures are still very active, so I don't know if they are related to my other seizures or not. But they are nasty.

Shelia

 

[k2s4ever]

To address several of the replies in one:
It's been a year yes, since the possibility of migraine was introduced-just like wow. and when an AED that is also aimed at migraines shows better results, how do you really know. And I never was diagnosed with migraine-have history of occasional disabling headaches, but with NSAIDS I take for back trouble, I rarely get even the common headache most people get. But with the aura I get, the fact that the smell persists all day, I personally think THAT causes a vague headache. It's fatiguing to have that smell in your nose all day with no reprieve!
Now today-I took a chance, and went to the grocery store before work: whew-no aura. Which yes, assuming I have SPS, I do know the aura is a seizure. I just say aura, because I still hold out my own jury on the fact that PERHAPS my olfactory auras are migraine based and not epilepsy. If they were due to migraines, then they of course would not be seizures. Nothing has been made definitive in my case, though when push comes to shove, it looks more like SPS.
sbncmo: when your smells come on, how long do they last? Once mine "turns on", I'm done, it last all day and only is gone when I awaken the next morning.
Also, my taste is affected too, so it ends up really being gustatory auras as well.

 

[sbncmo]

Hi K2,

Yes, the smells I experience will last off & on most of the day - just brief spells of relief & I do usually have other seizures on those days. The next day I'm fine too. I know it's me because when I ask my husband if he smells something hot or buning or like vinegar, he doesn't smell any of it.

 

[ColmanMac]

Don't know 'bout affecting threshold but pre GM tremor I always get a smell akin to burning garden rubbish

 

[k2s4ever]

Hi K2,

Yes, the smells I experience will last off & on most of the day - just brief spells of relief & I do usually have other seizures on those days. The next day I'm fine too. I know it's me because when I ask my husband if he smells something hot or buning or like vinegar, he doesn't smell any of it.

Thanks. I'm sorry to hear that. But you're someone then who knows how annoying it is to have it persist. Hmmm, vinegar, I've often stated that my smell sometimes morphs to a chemical type quality, and actually, vinegar is not too far off.
And I am, and have always been well aware my smell is not in the environment. I knew it from the first moment. My default assumption the first time I had it (when it would only last an hour or two then disappear), was that it was a sinus infection. I knew all along it is something physiological which is why I first saw my primary who sent me for a sinus CT scan, then to ENT who cleared me of nasal/sinus issues and figured neurological should be looked into. So that's where I remain. My auras have never progressed to a loss of awareness.