Coping With Epilepsy Mindy Fox, Marriage and Family Therapist
10% off neurofeedback training for CWE members - Santa Monica and Torrance, CA
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen



Reply
 
LinkBack Thread Tools
  #1  
Old 11-29-2013, 09:36 PM
Joined the Party
 
Join Date: May 2013
Location: TX
Posts: 46
Thanks: 19
Thanked 11 Times in 9 Posts

Question Smelling Smoke


One of the symptoms right before or as my seizures start has always been smelling smoke. I've talked to a few doctors about this (psychiatrist & neurosurgeon & neurologist's assistant) and from what I understand this can be either some type of aura or actually part of the seizures? I've been on Oxcarbazepine 600mg twice a day for 6 months. It has helped control my seizures a lot. Everything is better except for deja vu and smoke smells. Sometimes it feels like a whole day of deja vu. The smoke smell is kind of scary though because I never know if its really a fire somewhere in the apartment complex at first. Do you think increasing the med would help these things go away?
Reply With Quote
  #2  
Old 11-30-2013, 01:32 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
When I first started having seizures I would drive myself crazy looking for the sources of the odors. Sometimes it would be a sickly sweet smell but most of the time it is some kind of burning odor. Contrary to what most info says about the auras only lasting a few seconds to a couple minutes, my auras can last for hours or a day or longer. They only suspected partial seizures after I finally mentioned the phantom odors. That along with all the other symptoms confirmed seizures especially since my symptoms started within 24 hours of having a stroke,
Reply With Quote
The Following User Says Thank You to MAB For This Useful Post:
tinyfrogs (11-30-2013)
  #3  
Old 11-30-2013, 01:37 AM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,466
Thanks: 821
Thanked 1,234 Times in 954 Posts
Send a message via AIM to Endless
Tinyfrogs,

An aura is a simple partial seizure that precedes a generalized seizure. Smells and Deja Vu are both types of simple partial seizures. Basically, you are still having seizures. Most of the time neurologists shoot for 100% seizure control but sometimes that's not possible due to resistance to meds, side effects of meds, etc. Did your neurologist talk about how he's going to get your seizures under control? If not, it may be a good idea to ask him, and if he doesn't plan on 100% control, what are his thoughts about why.

I also experience a burning smell. Mine's more like burning rubber.

Last edited by Endless; 11-30-2013 at 01:39 AM.
Reply With Quote
The Following 2 Users Say Thank You to Endless For This Useful Post:
CQ:) (11-30-2013), tinyfrogs (11-30-2013)
  #4  
Old 11-30-2013, 07:05 AM
Joined the Party
 
Join Date: May 2013
Location: TX
Posts: 46
Thanks: 19
Thanked 11 Times in 9 Posts
Endless,
Thanks for explaining this. I was under the wrong impression about the auras. I'm currently in between doctors again so dont know what anyone was planning to do at this point. There was no one in town for them to refer me to at the time, and since I still had an appointment for follow up with the neurologist-surgeon's assistant I wasn't too concerned about it. I'm trying to get in to see a new neurologist here. Saw her once but she wanted to send me to another city for several overnights of tests they cant do here. It really wasn't possible for me at the time but Im going to go see her again to get her opinions and try to trust her this time. Currently my gp and gi are prescribing all my meds until I find someone.
Reply With Quote
  #5  
Old 11-30-2013, 07:13 AM
Joined the Party
 
Join Date: May 2013
Location: TX
Posts: 46
Thanks: 19
Thanked 11 Times in 9 Posts
MAB,
That was why I got concerned yesterday. I've had that burning smell twice in the last week, and yesterday it lasted for several hours.
Reply With Quote
  #6  
Old 11-30-2013, 09:02 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
Originally Posted by tinyfrogs View Post:
MAB,
That was why I got concerned yesterday. I've had that burning smell twice in the last week, and yesterday it lasted for several hours.
I've learned so much from this web site. I think this is the first place I have heard others say their olfactory auras last much longer than a minute or two.
Mine will even change. They might start out as burning incense, then change to something that almost smells like cigarette/pipe smoke and then change to an ammonia odor.

Last edited by MAB; 11-30-2013 at 11:27 AM. Reason: Correct an error
Reply With Quote
  #7  
Old 11-30-2013, 11:26 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
My daughter in law had an EEG because they thought she might be having absent seizures. The EEG didn't show anything unusual, so there was no follow up. She frequently tries to describe an odor that she smells. She says it smells like water. I have never heard anyone say they smelled anything like that during an aura. Has anyone experienced anything like this?
Reply With Quote
  #8  
Old 12-01-2013, 12:17 AM
Weaving the Community Fabric
 
Join Date: Sep 2012
Posts: 158
Thanks: 86
Thanked 69 Times in 50 Posts
Gasoline (overwhelming) I got mid seizure or a split second before blacking out.

Burning... you guys are making me laugh. Right around the time I was finally referred to a Neurologist, I kept opening the front and back door and sniffing around and feeling walls and getting ready to call the fire department-- but I could never locate the fire. It hasn't happened since but I never thought that was related to any of this.

Does the person who said water mean rain, or a pipe smell when you turn on the faucet? If the latter, I get a metallic sensation (not sure if it's taste or smell) sometimes after the seizure.

Last edited by giveasmile; 12-01-2013 at 12:31 AM.
Reply With Quote
  #9  
Old 12-01-2013, 05:33 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
Originally Posted by giveasmile View Post:

Does the person who said water mean rain, or a pipe smell when you turn on the faucet? If the latter, I get a metallic sensation (not sure if it's taste or smell) sometimes after the seizure.
I mentioned the water smell. I will ask DIL to describe it in more detail but I'm not sure if she is able. She has terrible word loss after taking Topamax for 2 weeks for migraines. This was about 2 years ago and she has never recovered.

Maybe she means a steamy smell or the smell you get when you jump in a pool and water goes up your nose.

I manage an apartment complex and I also live here. When there is a vacant apartment next to or below my apartment I always try to rent to non-smokers. Before I knew what was going on with the auras I always thought it was my neighbors smoking. My policy for calling the fire department is unless I see smoke/flames or feel heat I won't call unless someone else can confirm they also smell something burning.
Reply With Quote
  #10  
Old 12-01-2013, 06:14 AM
Joined the Party
 
Join Date: May 2013
Location: TX
Posts: 46
Thanks: 19
Thanked 11 Times in 9 Posts
I don't know about the water smell, sorry. After I found out my "hallucinations" as they"d been labeled for years were really seizures, I was able to calm myself some about smelling things that nobody else smelled. One day I smelled something weird in my apartment & tried to ignore it. My cat started sniffing an outlet & had never done that before but it didnt cross my mind it could be related. After telling him for 3 days to leave it alone, I got it checked. Maintanence came to fix it and the plastic part of the plug had melted inside the outlet. The cat had warned me for 3 days. So now I check things if he is concerned too. He helps me tell the difference in what is real sometimes.
Reply With Quote
  #11  
Old 12-01-2013, 06:46 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
My partial seizures took so long to dx because I was afraid to tell the doctor about my "hallucinations". I would tell her about all the problems with my leg and arm becoming weak and the exhaustion for almost 3 1/2 years but once I mentioned the phantom odors she knew right away what was going on and referred me to a neurologist.
Reply With Quote
  #12  
Old 12-01-2013, 07:01 AM
Joined the Party
 
Join Date: May 2013
Location: TX
Posts: 46
Thanks: 19
Thanked 11 Times in 9 Posts
It has been hard for me because I had a psych history first with depression, among other things. So hallucinations were an easy thing for doctors to diagnose me with and just give me antipsychotic meds over & over even though they didnt work. Most actually made things worse but once you are..
psychologically unstable...to put it nicely, they dont always listen to you. I thought I was just on the wrong psych meds for a long time because I was convinced I was having psychotic hallucinations. That started in 2003. In 2012 the psychiatrist I had then really listened to me and something tipped her off. She suggested trileptal as a test, and that was how I found out what was really going on.
Reply With Quote
  #13  
Old 12-01-2013, 07:33 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
Originally Posted by tinyfrogs View Post:
It has been hard for me because I had a psych history first with depression, among other things. So hallucinations were an easy thing for doctors to diagnose me with and just give me antipsychotic meds over & over even though they didnt work. Most actually made things worse but once you are..
psychologically unstable...to put it nicely, they dont always listen to you. I thought I was just on the wrong psych meds for a long time because I was convinced I was having psychotic hallucinations. That started in 2003. In 2012 the psychiatrist I had then really listened to me and something tipped her off. She suggested trileptal as a test, and that was how I found out what was really going on.
I understand completely. I had a stroke 3 1/2 years ago and that's when all the symptoms stared.They stared the day after the stroke while I was still in the hospital. The neurologist I was seeing at that just thought I was having TIA's and put me on meds to prevent another stroke. It wasn't until I finally admitted to the phantom odors that everyone figured it out. I just assumed I was "crazy". Now although the odors are unpleasant (mine can last hours or days) they don't bother me as much. Also the Lamictial has cut down on the number and intensity of the seizures.
Reply With Quote
  #14  
Old 12-02-2013, 12:58 AM
Weaving the Community Fabric
 
Join Date: Sep 2012
Posts: 158
Thanks: 86
Thanked 69 Times in 50 Posts
You are not alone. I got stuck in that psych box and on all those drugs that made everything worse, too. I was stuck there at an early age, and for so long, that it damaged me on many levels. It's hard to talk about. I'm just grateful we are not there anymore.
Reply With Quote
  #15  
Old 12-02-2013, 07:06 AM
Joined the Party
 
Join Date: May 2013
Location: TX
Posts: 46
Thanks: 19
Thanked 11 Times in 9 Posts
I'm sorry you've all had to deal with the psych world too. My depression is chronic, and inherited from people throughout my family history on both sides. I take Wellbutrin XR because it really helps me the most out of everything I've tried. It lowers the seizure threshold though which is why I think they haven't totally gone away. I've called a couple people trying to get a new neurologist, and a new psychiatrist, but it probably won't happen until after the first of the year. I also have ulcerative colitis so have to take asacol five times a day for that.
Reply With Quote
  #16  
Old 12-02-2013, 09:48 AM
Weaving the Community Fabric
 
Join Date: Sep 2012
Posts: 158
Thanks: 86
Thanked 69 Times in 50 Posts
I understand that both seizures and depression can be go hand in hand as they can both happen with misfiring of neurotransmitters. I just think too many people with tumors, seizures and/or other brain injuries are being diagnosed with mental illness by general practitioners or psychiatrists who have not stayed current on brain study-- and heaven help you if you end up put into the psychosis box. Maybe things are better today than years ago.
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Smelling Ammonia after workout Dignan The Kitchen 4 01-23-2012 05:04 PM
Epilepsy, bipolar, smoke pot freak out vapour The Kitchen 4 01-05-2010 08:39 AM
Secondhand smoke as seizure trigger?? k2s4ever The Kitchen 5 10-24-2009 11:38 PM
Can nicotine from second hand smoke cause seizures? forward2007 The Kitchen 4 08-05-2009 11:10 PM


All times are GMT -5. The time now is 04:25 PM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.