Olfactory hallucinations?

Ravensong

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I haven't been around here for awhile. I'm mostly controlled on Topamax at 500mg/day, but to be truthful, I have a few other conditions and sometimes I'm not sure what is the epilepsy and what's not, so sometimes I just deal with the symptoms and am thankful when they go away.

As a history, I have DID (dissociative identity disorder), PTSD, and major depressive disorder. I also have simple and complex partial seizures. Those, as I said, have been largely under control for awhile. When I have breakthrough seizures of late, they are usually in the form of visual "hallucinations," large dark forms that dart across my field of vision and that I also see in its periphery.

In 2006, I had brain surgery for a Chiari I Malformation. I was also evaluated, many years ago for surgery for my seizures, but did not qualify (I was having hundreds a day at the time.)

So, within the last couple of weeks, I've started getting this odor that smells like burning electrical wiring. It's been mostly in one part of my house, but it's where I spend most of my time. Driving me crazy, to the point where I have started unplugging everything when I leave. Now, I'm worried it's my furnace.

Well, I went to my mom's the other day, and I smelled it there. And then, in my car.

Uh oh. :ponder:

Wondering if anybody has experienced this before? I do have an appointment on the 27th with my neurologist, but I wanted to get some input with folks here in the meantime.
 

Frink

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Olfactory seizures are part of my TLE so it could be seizure related.

One other reason an unusual odor can "follow" us from place to place is a sinus infection.
 

Ravensong

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Olfactory seizures are part of my TLE so it could be seizure related.

One other reason an unusual odor can "follow" us from place to place is a sinus infection.
Ah, thanks Frink. No signs of the latter, but previous MRIs have shown chronic sinusitis, so...? I will continue to monitor.
 

Cint

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This sounds like it could be part of your SP or CP seizure, since they do include one's senses, either hearing things not there or something tastes weird.

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

Sensory seizures:

These cause changes in any one of the senses.
People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound;
 

Ravensong

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This sounds like it could be part of your SP or CP seizure, since they do include one's senses, either hearing things not there or something tastes weird.
Thanks, Cint. That's what I'm thinking, too, but I"m taking other precautions around the house, just in case.

Driving me sufficiently crazy, in either case.
 

seagull

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I do at times have olfactory aura but smell like cheap perfume going off but there all the time if you only smelling burning wire in certain parts of the house I get house checked out aswel
 

seagull

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Well I get that looked at asap.olfactory hallucination will not kill you but bad wiring just may
 

Ravensong

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I do at times have olfactory aura but smell like cheap perfume going off but there all the time if you only smelling burning wire in certain parts of the house I get house checked out aswel
Thanks! Yes, I'm being extra-cautious about the house and have someone coming to check the furnace next week. I'm still smelling it in other places, though, so...I don't know?
 

Nakamova

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Some olfactory auras can be migraine-related rather than seizure-related.See:
http://www.coping-with-epilepsy.com/forums/f23/migraines-aura-mimic-temporal-lobe-epilepsy-13286/

And this NYT article talks about about phantom smells that are related to nerve damage, rather than epilepsy: http://www.nytimes.com/1999/04/13/s...d-phantoms-may-be-at-work.html?pagewanted=all

Still, given your seizure history, it's a good idea to make a note of when and where the smell occurs, and if it changes in duration or intensity.

You might be interested in these other threads from the CWE archives:
http://www.coping-with-epilepsy.com...ng-do-your-bad-smells-last-per-episode-11943/
http://www.coping-with-epilepsy.com...t-hours-olfactory-aura-cant-really-sps-12224/
http://www.coping-with-epilepsy.com/forums/f20/olfactory-hallucinations-eeg-question-25135/
http://www.coping-with-epilepsy.com/forums/f23/sneezing-triggers-sps-olfactory-aura-9285/
 

Ravensong

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Wow, thank you!

I was having "kaleidoscopic" migraines about 5 months ago - no headache, but intense, visual patterns I would get on waking that would last for a long time. My neurologist gave me gabapentin at the time, because I was having regular migraines as well, and it broke the cycle, as well as stopped those. I recall that a long time ago, I also had a frequent, random smell that my then-neurologist told me was likely a partial seizure. It was a pungent musk odor - smelled like the carnivore (cat) house at our zoo. Haven't had that one in a long time.

Guess I may never really know what is causing this one. Will continue to explore it, though, and talk to my neurologist when I see him next week.

Thanks again for all the great info!
 

seagull

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Also have awful migraines and now head ache in my eyes seeing colours I site changing I kept going to optician he could find nothing but hospital did test I got glaucoma the rarer type but I certainly have hallucinations but I think due to eyes. Rather than e
 

Porkette

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Hi Ravensong,

I've had complex partial and absence seizures for over 40 yrs. and often before I have a complex partial seizure I will smell odd odors like natural gas, deviled eggs or a burnt odor. My Epileptologist told me this is a aura (simple partial) seizure which in turn leads to the complex partial seizures. I also see different colors of the rainbow in a zig zag pattern that flash back and forth from one eye to the other. I've been told that is happening because the neurons in my optical lobe are firing up which causing the hallucination (Colors). The next time this happens and you start smell an odd odor tighten up all the muscles in your body and make your hands into tight fists for a few seconds, by doing this it will often stop the seizure, my Dr. told me about this back in the 1970's and it has stopped many seizures over the yrs. I wish you the best of luck and May God Bless You!

Sue
 

Ravensong

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So let's see. I saw my neurologist today and he said that, since I've had olfactory hallucinations before (although they were different) and because of my long seizure history, he is inclined to think that these are seizures. Could be migraine or sinus infection, but he's leaning toward seizures. Suggested I have one of a couple of things: 3 day ambulatory EEG, in-patient EEG monitoring or, after I balked at both of those due to the expense coupled with the concern that my seizures have always only been captured using NP electrodes, which he said they don't use anymore, possibly starting a trial of Keppra.

So...I guess I'll be doing lots more research on this, but I'm just gonna throw this out there - anybody have "auras" or partial seizures that don't show up on EEG? And your thoughts on the benefits of having an EEG over a trial of meds?
 

Porkette

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Hi Ravensong,

I've had many e.e.g. and video e.e.g.'s that haven't shown all of the damage they found before brain surgery. According to both my Epileptologist and neurosurgeon the damage was to deep in my brain to show any of the problems. When I had the video e.e.g. the drilled 7 holes in my head and put the electrodes directly on my brain but still no show of damage. My advice to you is to have your Dr. do a Spect Scan, Pet scan or wada test this will show much more detail than the e.e.g.
In regards to finding the correct med tell your Dr. to do a DNA test on you. All they have to do is take a few tubes of blood and then get some salavia from the inside of your mouth. All of this is sent to the lab and they can see the amount of enzymes in your liver along with your body chemistry and match all of that up the best seizure med with the least side effect. My Dr, did this on me after trying over 10 different seizure meds and seeing none of them work, through the test he found out I was drug resistant to all seizure meds out on the market today. I wish you the bests of luck and May God Bless You!

Sue
 

seagull

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Do you have other things like the terror or de JA vu nerve tic in tissues.because they all different auras I have them all.burning wire I think I cope. With but the others are not so nice.Like you when it the smell one it can go on for days.This just personnel thought but sinus there a link brain and sinus play on each other.This my personal thoughts and I applied it to me.I only get smell aura about once a year it the other ones I get...I have taken cloberzam when got the smell and it do not work yet on other aura it mostly do work.Have you tried inhalator with strong oil say frankingsense cos have be carefully with oils.Always look for simple things first
 

Ravensong

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I have jamais vu quite frequently, sometimes deja vu. The olfactory thing I get several times a day. I have not tried the oils, but this seems to be a sensation that occurs "in my head," if that makes sense, so I'm not sure the oils would work. I'll try, though! I have some here. Thanks! I agree; simple things first!
 

Ravensong

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Yes, this was my experience. Seizures did not show up on the standard or scalp EEGs. My neurologist doesn't seem up on the latest in the literature. Either that, or he is just married to his own particular way of thinking. I'm pretty sure he wouldn't go for anything having to do with DNA testing. And it sounds expensive. I'm trying to keep expenses down as much as I can. It sounds interesting, though. I will do some research on it. Thanks!
 

Howll

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I get both olfactory and visual hallucinations. I once thought that they may be migraine related but then found out that some of the damage on my brain is in the occipital lobe, which would account for the visual hallucinations. The smell, I guess that's the TLE.

The smell I get only when having a known seizure, never had it alone, it sometimes turns into a taste. I describe it as like spraying hair lacquer into my mouth, it's vile.
The visual disturbances I have daily and usually are brief, a flashing annoying light in my field of vision. I sometimes get a blurry spot that lasts longer and moves slowly through my field of vision until it goes. I guess it's seizure related unless I'm having countless ocular migraines every day, but either way they don't really bother me or affect me.
 

Ravensong

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I occasionally get visual hallucinations, too. They seem to occur if I miss medication or am very tired.

All this used to bother me and, on occasion it continues to (mostly when I'm trying to figure out if it's something to worry about or not, like is it the furnace or my stupid brain), but generally now I just don't care anymore. About anything. So tired of dealing with all of it.
 

seagull

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my glaucoma see raindow sort of thing when look at lights.
I heard of something called robbet burnets syndrome I know it visual hallunsiation but may cover the other senses
 
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