This has been one of the most frustrating things about my neurological dilemma. I've mentioned this before, but I am in a spot of whether do I have migraine, SPS, or both. I do get occasional brilliant white tiny sparklers in my visual field that are very brief and occur very randomly out of the blue, and I don't have any ill effects from them. Aside from that isolated visual issue, in the neurological arena, my huge, very PRIMARY issue is that I get an extremely unpleasant (burnt wire, icky chemical, burnt whatever olfactory and gustatory aura (the two co-occur, never apart, always together). In the beginning, NOTHING seemed to be a trigger. I just got them abruptly, and once the burn smell and bad taste "switch on" they don't go away-they last until I wake up the next morning (unless my sleep is poor-then I wake up still with the distorted smell and taste). Hours of this tends to give me a vague, but "can live with it, although fatiguing" headache. Is it a migraine headache or a post ictal headache? WHO KNOWS!!! But then I would notice sometimes nasal congestion preceded the aura onset, and then and now it's very RELIABLE, actual smells in the environment trigger the auras. But it is very specific: food being fried on a frying pan/skillet, or food being baked in the oven. Well, as I'm part of a family that well, geez, needs to eat, I now get the aura anytime something is made like that. My hope is that the right medication will make me non reactive to it. I refuse to not cook because of this-how stupid! I don't know if it's the isolated charred residue that adds to it, but it's stupid. A diner where the skillet is right near by will trigger it. Cigarette smoke near me does NOT do a thing. This kind of sensitivity to a particular smell really makes me think migraine variant and not epilepsy, but heck if I know. and my current medications are Keppra and Lamictal. Depakote ER and Topamax added to the Keppra both tried. Keppra alone does nothing. Depakote ER markedly reduced but still did not eliminate the auras, and I had wicked side effect to Topamax so it had to be stopped. But after 4 months, it too had not totally stopped the auras-was as successful as the Depakote ER. (both of those are AEDs as well as migraine). So now Lamictal is the new one, and I am on the starter dose with an increase due this week. It shows too because in June I had ten aura days which is the WORST I've been in a long time. I sure hope an upped dose will help, but geez, will it if this is really migraine??? SO...anyone here have seizures that are directly triggered by actual external smells, or ever heard of this??? Thanks.
Do smells trigger SPS olfactor/gustatory auras?
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I know it must be frustrating not to know for sure, but at some point I don't think it matters whether it's migraine or epilepsy -- they are on a spectrum, and when it's hard to distinguish the two, you might as well focus on finding a treatment (as you are).
Smells are a known seizure trigger. What can also happen is that what might start out as a reaction to an actual smell becomes a sort of well-worn neural path, so that your brain says the smell is there even when it isn't actually occurring in your environment.
Smells are a known seizure trigger. What can also happen is that what might start out as a reaction to an actual smell becomes a sort of well-worn neural path, so that your brain says the smell is there even when it isn't actually occurring in your environment.
"What can also happen is that what might start out as a reaction to an actual smell becomes a sort of well-worn neural path, so that your brain says the smell is there even when it isn't actually occurring in your environment."
Now that right there is something to ponder. My issue is that regardless of whether it's one of the just as equal times that there is no discernible external smell, it's the same difference-the unpleasant burn smell & taste still persist. Only when I wake up after a reasonable night's sleep do they stop, just like when I take a couple hour nap following one of my occasional really severe headaches of the variety where I get nauseous and even at times, actually vomiting. (I wonder if those killer headaches I get every so often are migraines-but who knows) I agree, I don't care what the diagnosis-just stop the symptoms! Thanks Nakamova-you always rock!
Now that right there is something to ponder. My issue is that regardless of whether it's one of the just as equal times that there is no discernible external smell, it's the same difference-the unpleasant burn smell & taste still persist. Only when I wake up after a reasonable night's sleep do they stop, just like when I take a couple hour nap following one of my occasional really severe headaches of the variety where I get nauseous and even at times, actually vomiting. (I wonder if those killer headaches I get every so often are migraines-but who knows) I agree, I don't care what the diagnosis-just stop the symptoms! Thanks Nakamova-you always rock!
Thanks bazpa! If I do have E, then maybe in my case its just not yet the right medication/med combination. Lamictal is the newest game in town and the starter dose is not therapeutic anyway, and I'm due for my increase this week.
My other thing is that IF, and it's to me a BIG if, my auras are due to migraine-what in heavens would be the next medication to try? Many migraine meds are abortive types for the headache which is not my issue-I would need a prophylactic type, two of which have been tried and did not rid me totally of the auras. But TLE/SPS is known to be retractable too. and EEG shows my left-mid temporal lobe to be slow. and olfactory stuff I *think* is related to the temporal lobe when it's auras that are proven to be due to E.
My other thing is that IF, and it's to me a BIG if, my auras are due to migraine-what in heavens would be the next medication to try? Many migraine meds are abortive types for the headache which is not my issue-I would need a prophylactic type, two of which have been tried and did not rid me totally of the auras. But TLE/SPS is known to be retractable too. and EEG shows my left-mid temporal lobe to be slow. and olfactory stuff I *think* is related to the temporal lobe when it's auras that are proven to be due to E.
One thing is for sure, I have learned more from this site than from any doctor, or any place else in books or the internet. I am so thankful to everyone here who has been willing to honestly answer all my questions, no matter how silly they must seem, and how supportive they are. I like most otheres have had migraines since I was a child. They are no fun either. I feel for you, as it took over 3 years to even get a doctor to listen to me, and not just try to give me a anti-depressant or hormones! I really started to think I was losing my mind! It actually took me driving 25 minutes in my car, that I have no memory of with people calling 911, and the police after me to get diagnosed. Even though all the meds, and side effects have been hard, at least I know what I am dealing with-and that I am not crazy. Best of luck.
epileric
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Where did you find that quote?
I'd always thought the opposite occurred in the way we get used to smells or the way older people who've worn the same perfume or cologne for years wear too much because the olfactory receptors specific to that smell get worn down & dulled.
Hey there! I quoted it from post #2, Nakamova.
I can see both sides-desensitization, but also what Nakamova said.
I have no idea what the case is with me, but an actual food burning smell for sure fires off the aura I get, and it's an aura of some variant, whether migraine or E, as I don't know of any others, and brain lesions are not the case either, as I had an MRI and no lesions, tumors, etc.
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Hi eric --
Yes, normally we get desensitized to smells or sounds, but with epilepsy (or other brain disorders), the neurons can get sidetracked onto the wrong path. The more times this happens, the more likely that circuit will get traveled inappropriately, and we end up with a phantom burnt toast smell, or with earworms.
Yes, normally we get desensitized to smells or sounds, but with epilepsy (or other brain disorders), the neurons can get sidetracked onto the wrong path. The more times this happens, the more likely that circuit will get traveled inappropriately, and we end up with a phantom burnt toast smell, or with earworms.
I can see that making sense. I wonder because it's a similar enough smell to the (possible) E based aura, is that then tricking out my system now-throwing off the circuits, which due to E, are already misfiring. I just wish I knew why the burn smell & taste don't CEASE once triggered off. And then I still have the random onset where there is no identifiable trigger. It's Lamictal update visit tomorrow with the neuro so next dosage increase is on its way.
Earworms-is that the thing when a tune gets stuck in someone's head and keeps playing over and over?
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My sister once had her arm dangling in a lake when lightning struck the water (fairly far away fortunately). For the next few weeks, she had a tingling sensation starting at the top of her arm and running down. It happened over and over (before eventually fading). I suspect that this is sort of what happens with the smell aura -- it's as if the "burnt toast" track is being played over and over, so it feels continuous. The trick is finding how to re-set the machine so it's not stuck on PLAY.
Sometimes triggers can work through proximity, too -- when nerves near the abnormal ones are triggered that can set off the aura. A version of this happens when I look at the sun and sneeze -- the nerve that controls squinting and the nerve that controls sneezing are right next to each other, so they get their signals crossed.
Yup! You can read more about them in Oliver Sacks' book "Musicophilia: Tales of Music and the Brain".
Yup-thought so. Every so often I think we all can't some silly song out of our head, but that earworm thing is a totally different arena. I hate the burn smell and taste all day, but if it was that versus a tune in my head all day, talk about distraction!
success so far
Well, whether I have these auras due to E or migraine, I am now on 100 mg of Lamotrigine with no rash side effects. And to boot, this week, with direct exposure to the very specific external smell trigger that has reliably set off the aura, it's now three times that the aura DID NOT occur! So, I am starting to see obvious improvement. The only minor side effect I notice which was the same with Topirimate, and maybe is not connected to either, I have a slight sinus-type smell sort of like mildewy, but believe me, it's of no big deal and I'll take it 5000 times over the horrible burn smell and taste distortion of the aura!! I continue on Levitarectam 1500 mg daily too. That medication alone does nothing for the auras, but who knows if in concert with the generic Lamictal, it may work, so far as I'm concerned-leave me on it!!
Well, whether I have these auras due to E or migraine, I am now on 100 mg of Lamotrigine with no rash side effects. And to boot, this week, with direct exposure to the very specific external smell trigger that has reliably set off the aura, it's now three times that the aura DID NOT occur! So, I am starting to see obvious improvement. The only minor side effect I notice which was the same with Topirimate, and maybe is not connected to either, I have a slight sinus-type smell sort of like mildewy, but believe me, it's of no big deal and I'll take it 5000 times over the horrible burn smell and taste distortion of the aura!! I continue on Levitarectam 1500 mg daily too. That medication alone does nothing for the auras, but who knows if in concert with the generic Lamictal, it may work, so far as I'm concerned-leave me on it!!
success spell broken today
Well, today it ended. And it was the usual fried food that did it again. Last week, under same or similar circumstances, I was FINE. So what gives TODAY, I have no idea, but while it's not the end of the world as it never progresses past this, it still is annoying and now will come the vague headache with it, and the smell in my nose all day, distorting my taste. The taste, while irritating, is not the worst-it's the smell of burnt popcorn and burnt wires (and all the burn type disgusting iterations) incessantly up my nose all the live long day that drives me crazy-though I do just settle down and deal with it.
Well, today it ended. And it was the usual fried food that did it again. Last week, under same or similar circumstances, I was FINE. So what gives TODAY, I have no idea, but while it's not the end of the world as it never progresses past this, it still is annoying and now will come the vague headache with it, and the smell in my nose all day, distorting my taste. The taste, while irritating, is not the worst-it's the smell of burnt popcorn and burnt wires (and all the burn type disgusting iterations) incessantly up my nose all the live long day that drives me crazy-though I do just settle down and deal with it.