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Smelling smells that are not there?

I have a question. I have not been on any meds for epilepsy for many years now. So I have never thought this might be connnected but have recently started wondering.I smell gasoline. It has happened probably 4 times in the last 6 months. One time I was in my classroom by myself, once I was in an assembly, another time my husband and I were getting my son in the car to leave and the other time just watching tv. It only lasts for a few seconds, but no one else smells it and they thing that I am all crazy!I do have a meningioma brain tumor that I am having removed in about a month. I have been under the care of a neurosurgeon for awhile but not a neurologist. I have never mentioned this to the NS. I see a N on Monday and will ask her this question, but wanted to see if anyone else has experienced this? Thanks!!

Comments

RE: Smelling smells that are not there?

I smell odors such as burning rubber, garlic, heat smells like an iron left face down or a blanket left too close to a heater, and also have a metallic taste in my mouth. I can have the smells with or without the taste or the taste with or without the smells. They are my warning to sit down and hopefully I have time to before a seizure hits. I have noticed the garlic smell and metallic taste mean a definite seizure where the burning or heat smells are more common on days that I'm jerking. They can be aggravating and even nauseating at times, but I am thankful for them. Beats the heck out of the times they weren't there. Let us know what you find out. Keep in touch! _Spiz

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What you're experiencing, fall under the simple partial seizures. Simple partial, because you know this is happening while you're conscious.More information details about Simple Partial Seizures is at www.epilepsy.com/epilepsy/seizure_simplepartial.htmlThese are then divided into 4 more categories, depending on the types of symptoms. Sensory seizures being for the senses, like smells.No need to worry about it much. It's just that when it happens, you're having a simple partial seizure.Bruce IJ 

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I love this topic! BECAUSE I am warned by overwhelmingly strong scents I'm about to have a sz worse than a partial, it is more of a warning or aura for me. I have asked people - do you smell burning chicken feathers? Actually I asked a group I was in with once before I had ever experienced "olfactory hallucinations", my doctor's terminology of this event, and after this group's response to that question? I am VERY careful who I ask if they smell an overwhelming smell of:--"basement" or musty mildew and dust--beer--burning chicken feathers (I was raised on a farm and during the time we slaughtered our chickens we dunked their bodies in hot vats of water to remove feathers, and it's a very strong smell)--and several other scents I've been assaulted with but can't remember them all now.For me? I'll have one of those for months. I'll always have just one of the above and am usually relieved when it changes to another. Usually for me? It portends a sz is coming on. Sometimes I'm just bedeviled by the other whelming smell that yes, can have a taste for me like my epileptologist said.What my epileptologist told me is this:--All five senses can have "hallucinations" or memories of past experiences - such as smelling burning chicken feathers which was my worst and lasted several years.--You will not smell, feel, touch, taste, hear anything you haven't before. The 5 senses. The reason for this is that the brain is malfunctioning and reviving the memory of these sensations. IOW if you have never smelled for instance "spring time in Paris"? You have no ability to do so in an alfactory hallucination.--I have other sense related hallucinations besides olfactory or smell. I will hear "I'm home" in a totally empty house, it's my husband's voice very clearly heard, and he is not home,he's at work. That's an aura of hearing and I personally find it extremely unnerving.--A very smart ER nurse with a lot of years of experience in treating sz'ing people in her ER once put a cotton ball with essence of violet on it, which in itself was strong but not as distasteful as "basement" and it did seem to dissipate that phenomena I was uncomfortably experiencing. She then suggested I try smelling coffee grounds. Why? Because if you go into a specialty store only smelling perfumes, after 2-3 perfumes our smell discrimination between one brand to another falls apart but if you smell coffee grounds? It tends to clean up all the other smells. So we keep coffee grounds, not beans because their smell we've found isn't heavy enough, i a tightly sealed cannister I can bury my nose into to relieve a smell aura. Usually it helps a lot, but sometimes is just doesn't. If I have an uncomfortable smell aura I now either get out my essence of violet or more usually smell coffee grounds. I don't know how this would abort a potentially worse sz coming on than a simple, but often it does.All I just typed? Is anecdotal information and should not ever be considered as the medical gospel but only experiences of my life. I personally could skip this aura and not miss it one bit.Gretchen

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Gretchen, I wasn't brave enough to list the voice thing, don't know why-I'm already considered crazy. Since you are the brave person that you are,I'm gonna ride on your coat-tails and ask if anyone hears radios that aren't on or people talking in the next room that aren't there? This doesn't happen all the time but it does happen. I can't ever make out what's being played or said when that happens but when I hear my name,it's always loud and clear. One of the taste and smells I didn't list was hairspray. I not only smell it I taste it! Yuch! That is definitely one I can do without.~Spiz

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Well Spiz you and I and Dayna seem to be traveling down the same path - a lot!YES I do hear my name when I'm totally alone in the house and it is heard slightly louder than normal, but very clear. When I ws pregnant ears ago and I was pregnant a LOT there for awhile, I had epilepsy but didn't know it? Many times just as I laid down I'd hear a very loud rifle shot go off. I'd jump up in bed sure someone was in the house and had discharged a gun. I'd tell my obstetrician about this, very unnerved, and he had no explanation. Acted like I had some lurking little mental problem but I knew - I heard a very loud rifle discharged. I think right there, that experience of mine, a doctor I trusted saying he had never heard of that, is one of the reasons a lot of epileptics including me, start questioning sanity.AND how very weird but also reassuring for me I DO hear music or more specifically if there is some kind of noise going on, for instance that constant patter that never lets up of a play by play broadcast of a football game on TV drives me nearly nuts. I'll go into another room and often that noise of the crowd, the constant announcing starts literally sounding like I'm hearing in the distance a song I know. Same for driving on the highway. The hum of the tires in our compact car is very noticeable and some times instead of the tire hum? I'll start hearing music. My current song is one a daughter just mentioned to me which is "Stand by Me". So, we rented that movie, where that song is played? Interesting how very accurately I had hallucinated the exact tempo, sound of the singer's voice, everything about that recorded song, I hear when it's not being playing.Hey Spitz let me reassure you of this: when I was a hospice nurse, another time a consultant in a sensitive area of another type of nursing, and when I had my standard rule out neuro psych eval testing when I was diagnosed with epilepsy, I had to go through extensive psych testing to make sure I wasn't dragging around all kinds of neuroses and my testing was A-ok. IOW I'm not crazy. And neither are you. We just FEEL crazy - at times. Gretchen

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Gretchen & Spiz,We are not crazy. And my fav radio station is called KGOD around my house. When I lay down it starts playing and helps me go to sleep. Hubby says is my Ex and my son serenading me from Heaven. OK,with me.But yes I hear them too...the voices, the music. Now I never said anything about the garlic...cause I am always cooking, so I figured must be stuck in me.Dayna

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Getchen, I've also been startled awake alot from hearing a loud noise. I've never been able to distinguish it-only that it's sudden and very loud.And now we know who to blame for the garlic.Dayna-if I'm gonna taste or smell the garlic, I wanna taste the manicotti that goes with it! :) - HHUUUGGGERS!!!! Seriously though, thank ya'll for coming back with your answers. You don't know what a load off my mind this is and how scared I was to post it. ~Smiles~ -Spiz

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for me, it's bleach. my mom has never had a seizure that anyone is aware of but she wakes up in the middle of the nite smelling smoke, thinking that the townhome is on fire. and it's still standing and not charred so it obviously isn't burning down...and i do get the metallic taste once and awhile and i don't eat metal, so who knows what's doing it.

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Hello everyone! I too am in the same catagory as you...I get the smells, tastes and tingling as well. The only thing that I can't relate too is the voices. My smells come and go and I will get a chemical smell and taste several times a month and they will happen anywhere from 6 to20 times in a couple of days and then they disappear for about 2 to 3 weeks and then they start again. (I am thinking that they may be brought on by hormones if you know what I mean). Then there are the days when I will smell something such as a lotion that I recently used and that will be all that I can smell for a couple of days then it goes away. Very frustrating!! I never have anything else happen such as losing time so my doctor took me off of medication about 6 weeks ago and I am still having them at the same rate as I was when I was on medication. The good news is that I am off the meds and feel like a new person. So far I am dealing with my episodes pretty well although when I have several or more in a day I am more tired than usual but you know it could be worse so I am counting my blessings!! The coffee grounds tip sounds like a good idea and I will try it the next time my smells start. I just got through with the lotion smell so it probably won't happen for a few weeks but I will let you know how it works! I am really glad that I found this website and it is nice to know there are people out there who know what you are going through. Take care and have a great day! Sailor

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Well, I went to the N yesterday and finally came clean with the gasoline smell and she immedialty started telling me about olofactory(sp?) hallucinations and that she does believe this is a simple seizure. I did finally also decide to mention that I hear things that are not there. I really thought she would think"Get the psych down here!!" but she did not and reassured me that this is very valid things in addition to other things I described. We were in her office for nearly 2 hours. She was amazed that I have gone so long with uncontrolled migraines and this. I am now taken zonagran(?sp), toradol injections for the migraines and a nasal spray for the migraines (migranal).I really hope that this is going to help me. Not too keen on the shot thing but I do know that this does help.THanks!!Kelli

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Kelli, I'm so happy you found meds that help and your Neuro sounds like a definite keeper! I know being able to talk to her and finding she listened took a load off right then. Keep us posted,ok?-Spiz

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Kelli, Please keep us posted. I am interested about those migraine meds. I take the Zonegran at night, I think it is working. I know about having to take shots, kind of a drag, but maybe you wont have to take them for too long.Dayna

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Gretchen, Was I supposed to put a filter over my nose before I put my nose in the coffee can and deeply inhaled? (Smiles!) Seriously though, I was smelling the burning rubber smell today and finally I remembered what you had said about the coffee grounds, tried it and the smell wasn't near as pronounced as it had been.Thanks for the info!!!-Spiz

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I don't necessarily smell things but after a seizure my senses do get crossed and things feel different.   I always pet the dog for an hour or so after because it feels different, my hair feels different, and (I smoke, and I know...not good) but that is another thing that I have a craving for after, not because Im having a nic fit or anything but because it FEELS different.  As for smells, no.  but I figured it was similar.Tiffany

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Hi KelliI nearly wept FOR you - I'm so glad someone has a responsive, informed,compassionate, patient advocate, appropriate, time giver, reassuring --- DOCTOR. Good grief where do you live? Any good rental possibilities close? I'm about to shove out of this place. It's like shoving cattle through a chute but I don't happen to want to go through some of the chutes. IOW One size (or treatment) fits all? I've lived here since July? I've been FIRED by 4 doctors - so far. Well darn't I just ASKED a question of one neuro? I was outta there. Whyz come? BECAUSE one ethic/treatment fits all. But Doctor - I don't know if that fits! FIRED!I ask where you live (now don't tell - I'm kidding really) because I have lived in Malpractriceville, Failed Doctor Depot, I Don't Give a Darn - USA. What happened to Mayberry RFD?In serious, but I WAS serious above, when I had meningitis years ago I had a headache of gigantic proportions and was discharged from the hospital STILL with this blasted headache and I did wonder - well, what ARE "we" going to do about this? I was positively amazed. I had been getting Toradol injections in the hospital every 8 hours and they were WONDERFUL! I swear -no side effects! I wasn't staggery, sleepy, memory loopy - as on narcotics AND they worked! I was a little afraid to go home and loose those precious injections. We had to discuss this "issue". I was prescribed ONE Toradol injection a day? I was very dubious about ONE when I'd been getting them every 8 hours. But? It lasted nearly 24 hours and significantly reduced the pain of that really bad headache about 20+ hours. Go figure. Note: Toradal also comes in pill form and it is a for definite stomach ripper/upchucker for most so if your doctor tries to "reduce" you to pills? I would still be in it for injections. Trade hips every other day if you're getting them daily - IOW rotate sites. Sometimes the injection can rip the stomach too, not often. An RN friend of mine taught my husband how to give me my nightly Toradol injections which I got for 30 days after I was discharged with meningitis and marked the triangle area on my hip in a water proof marker where he should inject. My husband said THE most quotable thing though about injecting me and none of us will ever let him live it down. My meningitis? Long forgotten. His remark made in nervousness? Shall always be remembered. He was nervous about injecting me. I was overweight then = I needed a long needle to get through the fat and to the muscle and he was a little freaked by it all plus he had two seasoned RN's watching his performance too, but to reassure me and my friend he was up for it, he said close to this:"I'm not that nervous because I've got experience giving shots. I used to give shots to all our hogs when we were running pigs!" EEEEKKKKSSS I later learned I was glad he had so much experience with his hogs because in fact, he was pretty smooth. But it was really hard with my fat butt sticking up in the air every night and this vision of - the hogs.SO glad you had such a good appointment! Your post was the shining moment for my day!GretchenPS So wish me well tomorrow. I'm going to a NEW doctor. Or? Firing No. 5. I think I'm having a failure of communication?

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OK talk about visual speakers. Putting pictures in our heads! LOLI will never feel the same about getting a shot in my hip again.Well at least you wern't called a lil Hefer.Guys, if you ever say that to a woman, putting cute in front of it doesn't help, you still deserve what you get in return.Dayna

RE: Smelling smells that are not there?

No, smells are normal for people who have TLE.  There are 4 or 5 kinds of auras, and they all present differently.I smell, too.  I smell rotten urine, or I get that metallic taste in my mouth.  I have been having that since 95 at least--the taste thing.  The smell thing has only been in the last 5 years.People can se things, hear things, feel things, etc.  They have deja vu, Jemais vu, entre vu, seeing things distort like move further wawy, or g et closer, or see a body part moprh right bfore your eyes.The things people can see are whole picutres taht aren;t there--scenes, groups of people.The things that they can hear include bells clanging and get louder, music that isn;t there, people talking or people's voices, buzing, humming, etc.things people smell are unpleasantries, different flowers, burnt things, gasoline, candy, baked goods, etc.  The list goes on. 

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Oh gosh Spitz - I'm so tickled I posted that about the coffee grounds then. You made my day! Thanks for letting me know that helped. Really made me feel happy.I forgo the filter - too desperate for relief to look for one! My current odiferous unpleasantry is a very strong smell of a root cellar but I call it "basement" but as a child I was frequently in and out of a root cellar that was damp and always had strong odors. It is a very odd world when you have to suddenly turn to your husband and say in fear - oh no, I'm smelling "basement", plus my dog alerts that aura of "basement" and it's meaning often is a drop sz might be coming on very quick or a t/c. When I wail that? Others look at us like.....oh to heck with "others" and "normals". I SMELL - basement and it has deep meaning for me because for some reason I can have a hearing hallucination and it's only that, stops there - but unnerving, but a smell hallucination? I'm very likely heading south very quickly. The most unpleasant olfactory hallucination I've had so far although burning chicken feathers runs a real close second. I have asthma? I always have this creepy feeling that the moldy, dusty smell is going to crank my asthma up. I'm suggestive I guess (I guess?). that's an example of something I'd post to "my own people" here, but NEVER tell my doctor my asthma is cranking up from smelling - basement.Gretchen

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Gretchen, I have asthma too. Don't ya just love the aura-seizure-come out of seizure-find your gasping for air cycle? Do you have a hand-held nebulizer? If not, please get one. It has been so much simpler grabbing it than having to get to my regular one. You know yourself, every step saved during an attack is important. You can also get the adaptor to hook it up in your vehicle. I don't know how I did without it. The one that seems to set off my asthma is the heat smell. I've always felt that it's because I worry myself silly that something is on fire. I drive everyone insane trying to find where the smell is coming from. I just know the first time I let it go as one of my smells-the house will burn down. Anyway, I end up wheezing and gasping. Oh-the hand held nebulizer has a battery pack you can get also.-Spiz

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I dont get the smells, but many people get smells before having a seizure. Many people have just auras like smells, feelings, lights, strange feelings......but dont have a seizure. http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa