Are Strange Smells associated with Simple Partial Seizures?

[momof3boys]

I ask this because last night I was laying in bed, it was almost midnight, and I was just watching tv, when all of a sudden I got this awful smell. It was a weird strong odor, and I would smell it, and then a few seconds would go by and I would smell it again. Its hard to describe how it exacly smelled. It just wasnt a good smell. My right leg started to twitch on and off a couple of times, but then quit.

Should I bring this up to the psych dr that I will be seeing tomorrow? Ive just never experienced this before. Since returning home from the hospital doing my VEEG, every night at around 3am, Ive experienced this funny arua feeling, which at times comes with my legs or hands wanting to twitch. I try to stop it and turn on my back or reposition my myself in bed. My head wants to turn to the right side when I get that feeling. I try to stop it before it does though.

 

[Eve]

Definitely bring this up with your Dr.


I have simple partials seizures that always come in the middle of the night otherwise referred to as nocturnal seizures.every now and then I get this awful like chemical like smell followed by a seizure or a migraine. What are taking for it? I used to take Cabatrol and now I take Keppra. I also take Zoloft to get over the side effects of Keppra.

I sympathize with you.:e:

Are you seeing a neurologist?? You should be.

 

[momof3boys]

Definitely bring this up with your Dr.


I have simple partials seizures that always come in the middle of the night otherwise referred to as nocturnal seizures.every now and then I get this awful like chemical like smell followed by a seizure or a migraine. What are taking for it? I used to take Cabatrol and now I take Keppra. I also take Zoloft to get over the side effects of Keppra.

I sympathize with you.:e:

Are you seeing a neurologist?? You should be.

Yes, Im seeing a Neurologist. I just got done having a VEEG last week. He wanted me to have a grand mal seizure, but said after reading the results, it looks like I outgrew those, and what I was experiencing were non epileptic seizures. He said they were stress related seizures becuase they were not showing up on the VEEG. I was always use to having complex partial seizures, and this time I was concious through out the entire seizure. So I was confused as to what these new seizures were. I was on Carbotral ER and Keppra XR before I went in for my VEEG. That was on Monday, March 7th. I was taken off all medications while I was there, had seizures tuesday, wednesday and thursday. Thursday evening I was put back on Keppra XR, my regular amount I was on before. I was taken off of Carbotral. I no longer take that now. But since being back on the Keppra XR, I had no seizures last friday, and then saturday I had like 6 within an hour's time. But none since then. each night around 2am or so, I get the funny feeling of a aura trying to come on, and my leg or hand want to twitch. Last night I experienced that strange smell and had the aura.

Tomorrow I see the psych dr which my neuro referred me to. He thinks those seizures that I had are stress related. But I dont think they are. Being put back on the Keppra XR, I no longer have them during the days like I did when I was off the medications and having them very often during the days I was in the hospital.

Im going to be bringing alot of stuff up tomorrow when I see this dr.

I go for a follow up appointment with my neurologist May 25th

 

[Endless]

Oh, yeah.....

I ask this because last night I was laying in bed, it was almost midnight, and I was just watching tv, when all of a sudden I got this awful smell. It was a weird strong odor, and I would smell it, and then a few seconds would go by and I would smell it again. Its hard to describe how it exacly smelled.

Oh, yes. This can definitely be a seizure - a type of simple partial seizure from the temporal lobe. The smells are usually bad (don't know why), and can often have a chemical or bitter nature to them. They come out of nowhere when there is really nothing real to smell. They start suddenly, and disappear suddenly. They last the same amount of time as other partial seizures - usually under 5 minutes.

http://www.mayoclinic.com/health/temporal-lobe-seizure/DS00266
http://www.epilepsy.com/wiki/973090/Simple+Partial+Seizures

Your doc is a nut to think that they are due to stress. He's not an epi, is he. An epi would know.

I smell all kinds of weird stuff, but it doesn't happen often. The smells are really hard to describe but I'll try my best. Mine usually smells bitter or burned. Bitter chlorine smell is the closest I can come to describing the last one. Ick. Once I smelled fishy formaldehyde with a bitter undertone in it. Double Ick.

I also have a weird smell thing where everyday normal/real things don't smell right. Car exhaust smells like chlorine, my dog smells like flowers, the air after a rain smells like cow poop. But that's another problem caused by another source (IIH - fluid pressure that's too high on my brain)

I've found psychologists to be almost totally uneducated about seizures - all the different kinds, and their effects on the human brain. If you tell yours about the smells, you may want to print out the above articles, and maybe some more for good measure (from reputable souces). Take them along, with the applicable parts highlighted. Same for your neuro. Or get a new one that has a clue.

 

[momof3boys]

Oh, yes. This can definitely be a seizure - a type of simple partial seizure from the temporal lobe. The smells are usually bad (don't know why), and can often have a chemical or bitter nature to them. They come out of nowhere when there is really nothing real to smell. They start suddenly, and disappear suddenly. They last the same amount of time as other partial seizures - usually under 5 minutes.

http://www.mayoclinic.com/health/temporal-lobe-seizure/DS00266
http://www.epilepsy.com/wiki/973090/Simple+Partial+Seizures

Your doc is a nut to think that they are due to stress. He's not an epi, is he. An epi would know.

I smell all kinds of weird stuff, but it doesn't happen often. The smells are really hard to describe but I'll try my best. Mine usually smells bitter or burned. Bitter chlorine smell is the closest I can come to describing the last one. Ick. Once I smelled fishy formaldehyde with a bitter undertone in it. Double Ick.

I also have a weird smell thing where everyday normal/real things don't smell right. Car exhaust smells like chlorine, my dog smells like flowers, the air after a rain smells like cow poop. But that's another problem caused by another source (IIH - fluid pressure that's too high on my brain)

I've found psychologists to be almost totally uneducated about seizures - all the different kinds, and their effects on the human brain. If you tell yours about the smells, you may want to print out the above articles, and maybe some more for good measure (from reputable souces). Take them along, with the applicable parts highlighted. Same for your neuro. Or get a new one that has a clue.

The dr I am seeing is the following: Dr. Deepak Madhaven
It says he is the associate director of the epilepsy center at the University of Nebraska Medical Center.

http://www.unmc.edu/neurologicalsciences/index.cfm?L2_ID=20&L1_ID=2&CONREF=64

I printed out alot of different information on simple partial seizures that Im taking with me tomorrow to the psych dr. I want her to see exacly what kind of seizures that occured during the time I had my VEEG, and they they took place the day after I came home, and since then Ive been having these experiences at night where they want to start, with the strange smell, the weird arua feeling, and then at times would lead to a twitch of my leg/foot or hand. Always on my right side of my body.

I will for sure print those articles out and take them with me.

 

[fluffance]

This forum has been so helpful to me. According to my consulting physician, Ive been having simple and complex partials for 6 weeks now (Yet to see the neuro for diagnosis, still haven't received an appointment date yet) So all very new stiil.
I've been experiencing funny smells. I keep saying to people "Cant you smell that??" Now I think I realise its me. I experience 2 different smells. Hard to describe, 1 is the smell of my old dog. Just before he passed, when ever I visited my mums house, he had a distinct smell. Not a doggy smell, very strange. The 2nd smell is like the dentist gas mask I got as a kid (YUK)
Last night before I fell asleep, I smelt both these smells. This morning I woke up with a massive headache.

Good Luck with your next appointment momof3boys, let us know how you go

 

[Endless]

If your doc is saying that it was stress related because it didn't show up on the eeg... we have a gazillion posts on here about that. Simple Partial Temporal lobe and Frontal lobe seizures may or may not show up on an eeg, because:

1) It was happening too deep in the brain or be too small to be caught by the electrodes. https://www.epilepsy.com/EPILEPSY/eeg_read
2) Inbetween seizures it didn't show up because you haven't been having seizures long enough or hard enough to make discernible changes to the brain. So there was nothing to detect when you aren't actually in the middle of a seizure.

Don't be surprised if your psychologist is resistant to the information you bring. If you ask a surgeon, he says you need surgery. If you ask a naturopath, they say you need herbs. If you ask a dietician, they say you need a change in diet. If you ask a psychologist or psychiatrist, they'll say it is stress or another related problem. It's hard for them to step out of their point of view and look at it any other way. There are a few exceptions out there and you may get lucky and find one. but just don't be surprised.

 

[momof3boys]

This forum has been so helpful to me. According to my consulting physician, Ive been having simple and complex partials for 6 weeks now (Yet to see the neuro for diagnosis, still haven't received an appointment date yet) So all very new stiil.
I've been experiencing funny smells. I keep saying to people "Cant you smell that??" Now I think I realise its me. I experience 2 different smells. Hard to describe, 1 is the smell of my old dog. Just before he passed, when ever I visited my mums house, he had a distinct smell. Not a doggy smell, very strange. The 2nd smell is like the dentist gas mask I got as a kid (YUK)
Last night before I fell asleep, I smelt both these smells. This morning I woke up with a massive headache.

Good Luck with your next appointment momof3boys, let us know how you go

Thanks! I will update you all when I get home from the appointment tomorrow.

If your doc is saying that it was stress related because it didn't show up on the eeg... we have a gazillion posts on here about that. Simple Partial Temporal lobe and Frontal lobe seizures may or may not show up on an eeg, because:

1) It was happening too deep in the brain or be too small to be caught by the electrodes. https://www.epilepsy.com/EPILEPSY/eeg_read
2) Inbetween seizures it didn't show up because you haven't been having seizures long enough or hard enough to make discernible changes to the brain. So there was nothing to detect when you aren't actually in the middle of a seizure.

Don't be surprised if your psychologist is resistant to the information you bring. If you ask a surgeon, he says you need surgery. If you ask a naturopath, they say you need herbs. If you ask a dietician, they say you need a change in diet. If you ask a psychologist or psychiatrist, they'll say it is stress or another related problem. It's hard for them to step out of their point of view and look at it any other way. There are a few exceptions out there and you may get lucky and find one. but just don't be surprised.

Im not holding out any hope. I can totally see this dr saying its all stress related. Im just not buying that due to the fact that these seizures occured after I was taken cold turkey off all my medications, and I was only off my medications for 3 1/2 days. During that time period, this neurologist Im seeing said he wanted me to have a grand mal. When he didnt see me having that kind of seizure, he then comes in and tells us that these seizures Im having are non epileptic. I went from having the complex partial seizures, not even remembering anything at all during the seizure, to totally knowing whats going on while my body is jerking all over the place! He says these are stress related... then why the heck havnt I had these before? He told my mom on saturday when I had the 6 seizures within half an hour, that he still thinks these are stress related and since he pulled me off the carbotral, he didnt feel comfortable putting me back on that. He thinks the Keppra XR will hold my areas he saw on the video eeg that still indicates I have epilepsy, but to him, I didnt have any epileptic seizures during my veeg. My mom does recall him saying that its possible I am having seizures that are too deep within the brain for the veeg to pick up, but he kept focusing on them being non epileptic. He says one thing, then goes back to the other. its so screwed up!

 

[Endless]

Mom,

How frustrating. Well if some of it's stress your doc is making it even worse!

From what I've heard, many people have a mix of epileptic and non-epileptic seizures. It's pretty common. I think by keeping you on the keppra what your neuro is really saying is that you may have a mix - you have epileptic seizures, and some stress-related ones. He'll treat the epileptic ones, and send you to a specialist to treat the others. He's looking at you as a whole person. If he thought they were all stress-related he wouldn't have kept you on the Keppra.

He may be totally wrong about the non-epileptic seiz. But just as long as he keeps treating you with Keppra, and the Keppra is helping, then who cares what he thinks?

Another option... go to another epi. A second opinion is always a good idea. Try to just take the test results and not the chart notes with you to the 2nd. It'll be hard to shake a dept. head's opinion if you see another doc.

Yes, please do let us know how your appointment goes. Here's positive thoughts for you. You are going to be okay. <<<<hugs>>>>>

 

[Endless]

Ha! just found this for you.

http://www.ncbi.nlm.nih.gov/pubmed/20537596

Supplementary motor area seizures may present with bilateral tonic-clonic movements with no loss of consciousness and no postictal confusion, and patients may be erroneously thought to have psychogenic nonepileptic seizures. We describe the rapid emergence of alpha activity in the immediate postictal period in patients with supplementary motor area seizures as an additional confounding factor that may lead to the erroneous diagnosis of nonepileptic seizures in these patients. We present two cases of patients with intractable supplementary motor area seizures investigated with video/EEG monitoring. Their postictal EEG records revealed an immediate postictal recovery of alpha activity, mimicking the pattern seen with psychogenic nonepileptic seizures. Prolonged video/EEG monitoring is mandatory in establishing the diagnosis of supplementary motor area seizures and in distinguishing this condition from nonepileptic seizures.

 

[momof3boys]

Yeah, I pretty much agree with like half of what he is saying. He says Ive outgrown the grand mal seizures, but I can totally see being true. But the seizures he claims I had at the hospital being non epileptic seizures, I dont they are non epileptic seizures.

I think what happened, is that I experienced simple partial seizures, which didnt show up on the VEEG due to them being too deep within the brain to detect.

He said the same thing to my mom on saturday when my husband and mom both got scared at seeing me have back to back seizures within a small amount of time.

I was suprised that after have seizures for a day and a half, he put me back on the Keppra XR and said the seizures were non epileptic. I dont recall him coming in thursday morning, that was the morning I had the big seizure where I blacked out for a few seconds and dont recall the nurse telling me to remember the few words they want you to remember. They gave me adivan after that seizure occured. My mom said there were alot of people in that room that morning. It was the biggest seizure I had while being there.

It was just a couple hours after that took place that the dr came in and said they were not being recorded as epileptic seizures. I dont even remember him being in the room, due to being on the adivan.

I will see how tomorrow's appointment goes. I told my mom it would be nice to request the VEEG and send it to my neurologist here in town to see what his thoughts are on it. He's just a neurologist I have here incase something were to happen, I have a dr close by.

 

[momof3boys]

Ha! just found this for you.

http://www.ncbi.nlm.nih.gov/pubmed/20537596

Thank you so much! That I will be printing for sure!

 

[Endless]

It would be interesting to get his notes on his interpretation of the video EEG. It's in doctor-speak, but you may be able to figure out if the brain waves mentioned in the article are one of the reasons he diagnosed you with non-epileptic seizures.

 

[momof3boys]

Yeah it would be interesting to see what he put down in his notes.
I was telling my mom the same thing just the other day. She and I were talking about requesting the EEG and possibly taking it to my local neurologist or any other one we may find. I just would love to get a second opinion on it. I think since he didnt see the grand mal seizure come about, he pretty much summed it up to me outgrowing them and these not being a big enough one to put as a epileptic seizure. Then again he made the comment himself that these could be epileptic seizures, just not showing up on the veeg. I just wish he would focus on one reason and not put another reason out there too....

 

[Endless]

I'm willing to bet he's in the "mix of both" opinion, and that's why he's waffling and treating from two directions. But no telling until you get those chart notes.

Will you let us know what you find out?

 

[momof3boys]

I'm willing to bet he's in the "mix of both" opinion, and that's why he's waffling and treating from two directions. But no telling until you get those chart notes.

Will you let us know what you find out?

Yeah I will let you know what I find out. Thanks for all your help!

 

[Eve]

Good luck to you.

When I was in my early 30s' I started having weird smells very chemical almost chlorine like smell followed by weird feelings in my legs and sometimes arms I kept telling these Doctors that I felt like I was being electrocuted. It would always happen in the middle of the night. The doctor thought I needed to see a psychiatrist. I did go to a psychiatrist and she knew Nothing about seizures or epilepsy! I was so humiliated!

For the next few years I continued to get sicker and sicker and then the migraines started so I called a doctor from my hometown and he ordered a local neurologist to give me a sleep EEG. The local Doctor gave me a regular EEG instead so it didn't show my seizures.

Finally I was frustrated and flew back home and saw a doctor at the State University medical center. He had me stay up all night, go off all my meds , and then take a sleep EEG at 9 am after being awake all night and that is when they found out I had the nocturnal simple partial seizures.

I hope you get the answers you need and hang in there and remember you're not alone!


And Endless thanks for the link to the articles I will read them first thing tomorrow morning.:e:

 

[mel239]

I go through cans of spray, candles , and Ive even poured bottles of lestoil{ i like the smell} directly on my furniture and carpet-in my house it became a joke-well know the smells have decreased and been replaced by things that dont smell like they should-I think thats even worse-makes you feel crazy when things dont give off the odour they should-also makes you feel helpless-you cant dump lestoil over a pan of burgers and still eat them-I just wish things would quit changing-Im tired of putting my focus and energy on one thing and having it change-I never know quite what im looking for and its been over 2 years

 

[elizzza811]

I'm being evaluated for simple and complex partial seizures, and what I seem to get just prior is a funny taste in my mouth...chemical? bitter?...I'm not sure...it's not gross or anything, just sort of strange-tasting. The taste is what I recall, but for all I know I'm smelling weird things, too?

I also lose complete or partial consciousness, even though my eyes remain open and sometimes I am able to follow simple instructions. I do not believe in psychogenic seizures...you don't crash your car, zone and drop phones, and burn your fingers with a cigarette having non-epileptic seizures.

 

[mel239]

Why is it they put stress related seizures as psychogenic but then turn around and say lack of sleep and stress can contribute to an epileptic seizure? Docs are like the weather no matter how smart or what their title,opinions change like the weather