Burn smell aura PERSISTS ALL DAY!! How many with SPS have same??

[k2s4ever]

I have simple partial seizures, and the only discernible feature is the olfactory aura of a burning smell. It "clicks" on suddenly and abruptly. Once the smell happens, it persists ALL DAY LONG. I have been on Keppra for 10 months now and though I thought initially it might be helping, I'm getting worse again. I have an simple partial seizures event almost every day now, currently 13 days in a row. I average 20 seizures in a month now. My taste gets distorted too. The smell sometimes is chemical like as well, but on my current round, I am getting headaches by late evening and more fatigued. See neurologist next week and wondering if med change or addition will be in order. I have simple partial seizures only. Anyone else with the olfactory aura have the smell that stays all day like that? I can't get rid of it, have tried pro-active measures like jasmine oil under my nose-nothing stops it. No pattern. Some triggers like smoke and when something is being fried, but most of the time, nothing triggers the seizure-it just happens. Feedback anyone?

 

[Nakamova]

Maybe your olfactory nerves have gotten stuck in some kind of feedback loop. It sounds like the Keppra isn't doing the trick, so it may be worth trying a different AED.

Does anything seem to help get rid of the smell? I've read of people crying, or gagging, and having some success. Also using nasal irrigation (like a neti pot).

The article at the link below talks about people suffering from phantom smells and tastes. Among other things it mentions clonazepam as a potential treatment, also surgery.

http://www.nytimes.com/1999/04/13/s...d-phantoms-may-be-at-work.html?pagewanted=all

 

[Rhea]

I always smell wires burning. Don't know why it's wires. Like an electric wire smoldering. When we were kids we used to burn the rubber off of wire to collect copper and alum.

Makes it hazardous sometimes. I smelled it this summer for a long time. My husband just thought it was another episode. Turns out our foster child had turned her heater on in the summer thinking it was A/C. She has learning limitations. So, it took a while to catch on that it WAS really something burning.

 

[k2s4ever]

Maybe your olfactory nerves have gotten stuck in some kind of feedback loop. It sounds like the Keppra isn't doing the trick, so it may be worth trying a different AED.

Does anything seem to help get rid of the smell? I've read of people crying, or gagging, and having some success. Also using nasal irrigation (like a neti pot).

The article at the link below talks about people suffering from phantom smells and tastes. Among other things it mentions clonazepam as a potential treatment, also surgery.

http://www.nytimes.com/1999/04/13/s...d-phantoms-may-be-at-work.html?pagewanted=all

Very interesting that you brought that up about the neti pot. Yes, I have done that before and it has provided temporary relief-the smell will usually come back a few hours later. Same with crying. But not 100% of the time. In fact often times the neti pot does not do the trick. and crying-well, can't make myself cry anyway-only random.
I agree-Keppra is obviously not helping at this point. Will see what the neuro says next week. Could be worse, but it's not fun and getting some headaches with it. I also don't want this to get worse and progress to secondary generalized or something-no thank you!
will read the link and thanks!

Rhea yikes-that's dangerous! I've managed to discern the difference between my bad burn smell and actual ones. When someone burns popcorn in the microwave at work for example, I can detect that even when my own built in version of the odor is front and center. Burnt popcorn smell is a very good description of my aura smell. But I can still discern another external burn smell somehow. I know the difference. Is your taste affected? Mine is.

 

[k2s4ever]

Nakamova:

I did read the article on phantom smells. Not surprised to find that there was no reference to the fact that E can sometimes be cause. Makes me think that there is still a real disconnect in the medical community. When more than a year had gone by and I was still having the burn smell except with even more frequency, I went to my primary care physician who ordered a sinus CAT scan and said to bring the results to an ENT. (had a past history of sinus infections).
The first ENT totally blew me off, said it was nothing sinus/nasal, etc and to just go to a Taste & Smell Center if it persisted and actually seemed annoyed that I was even there. (and he was voted as one of those top physician type ratings-yeah, really showed in my case) The smell persisted of course, so I decided to get a second opinion by another ENT. This ENT was then the one who suggested it could be something neurological and referred me to the neurologist I have now been seeing for a year who had from day one suspected SPS, started me on Keppra after the second visit, and then after ambulatory EEG results, finally said it definitively.
anyway-interesting though that with the phantom smell treatment, Clonazepam is used, and that of course is used an AED at times too. But since it's a benzodiazepene, I think there are issues with a tolerance being developed, so long term use would seem an issue.
Well, my next appointment is this week. In the meantime, day 16 in a row for me, so I am not in a good spot with my SPS right now!

 

[Nakamova]

Yeah, the article didn't mention epilepsy, but it did talk about numbing the nerves or doing surgery on them -- which seems to me to indicate a misfiring nerve problem. From what they described, whether the cause is epilepsy or some other nerve damage, it's still a bit of mystery in terms of treatment. I read one piece that said that cocaine can help to get rid of the burning smell (probably by numbing the nasal nerves)! Except of course cocaine's not a real option for anyone.