A distinct odour associated with epilepsy?
- Thread starter demioyin
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Endless
Even Keel
- Messages
- 4,466
- Reaction score
- 3
- Points
- 0
Demioyin,
Welcome to the forum! There are lots of parents of children with seizures in here, so you have lots of company and support.
Interesting you should mention odor. It's thought that when a seizure is near or happening, their is a change in scent that dogs can detect. The theory is that it's how seizure alert dogs can do their job. I don't know what causes it, but increased sweat, changes in metabolism, body sweating out the meds, etc. might be a couple of possibilities.
There are a bunch of posts online about tegretol and and an unusual body odor. Google "Tegretol odor" or "Carbamazepine odor"
Here's one of them:
http://www.medkb.com/Uwe/Forum.aspx/epilepsy/900/bad-skin-smell-from-medicin-oxcarbazepine
A good resource is www.askapatient.com. It has side effects, shared directly by patients. It's not filtered by doctors or the FDA. Look up Tegretol. Then use your page search function for "smell," or "odor." (Edit, Find on this page....) It mentions an unsusal smell, but I think they are talking about the patient smelling something. Could be smelling themselves, who knows.
Welcome to the forum! There are lots of parents of children with seizures in here, so you have lots of company and support.
Interesting you should mention odor. It's thought that when a seizure is near or happening, their is a change in scent that dogs can detect. The theory is that it's how seizure alert dogs can do their job. I don't know what causes it, but increased sweat, changes in metabolism, body sweating out the meds, etc. might be a couple of possibilities.
There are a bunch of posts online about tegretol and and an unusual body odor. Google "Tegretol odor" or "Carbamazepine odor"
Here's one of them:
http://www.medkb.com/Uwe/Forum.aspx/epilepsy/900/bad-skin-smell-from-medicin-oxcarbazepine
A good resource is www.askapatient.com. It has side effects, shared directly by patients. It's not filtered by doctors or the FDA. Look up Tegretol. Then use your page search function for "smell," or "odor." (Edit, Find on this page....) It mentions an unsusal smell, but I think they are talking about the patient smelling something. Could be smelling themselves, who knows.
- Messages
- 7,648
- Reaction score
- 997
- Points
- 278
Interesting you mention this...my husband has noticed that after a tonic clonic, I have a strange odor (he hasn't come up with a good description of what it smells like) that is definitely different than regular sweat. And this is coming from a man that can't smell a pile of dog sh*t from 3 feet away...lol
I'm not on Tegretol...I take Lamictal XR, Topamax, and Keppra.
After I've recovered, I also notice the smell...kind of strange, but I'm glad that I'm not the only one who has noticed this. Endless has an interesting point...maybe the seizure alert dogs can smell this long before we can and that is how they can tell one is coming on before people who use them even know it's coming?
I'm not on Tegretol...I take Lamictal XR, Topamax, and Keppra.
After I've recovered, I also notice the smell...kind of strange, but I'm glad that I'm not the only one who has noticed this. Endless has an interesting point...maybe the seizure alert dogs can smell this long before we can and that is how they can tell one is coming on before people who use them even know it's coming?
Epilepsy and body odor
I have noticed that my teenage son has a distinct body odor a day or so before a seizure hits. I noticed that some have mentioned tegratol as a possibility of the cause of the odor. My son had been on this medicine at one point, but for a very short time about 2 years ago. He still smells of a distinct odor before the seizure(s) hit. I believe this to be that when his brain is going through some severe changes, that the hormones that are put off create this odor. The stronger the odor the harder the seizure.
I have noticed that my teenage son has a distinct body odor a day or so before a seizure hits. I noticed that some have mentioned tegratol as a possibility of the cause of the odor. My son had been on this medicine at one point, but for a very short time about 2 years ago. He still smells of a distinct odor before the seizure(s) hit. I believe this to be that when his brain is going through some severe changes, that the hormones that are put off create this odor. The stronger the odor the harder the seizure.
I do have smell can go on for few days same time I get live flesh you can see the nerves twitching that go on for hours aswel..I not had the smell aura for sometime now but the smell not nice,I can only describe it as similar to cheap perfume not plesent
I always smell a bad odor on my husbands breath after he has had a seizure. And the one time our son had a seizure as a baby I smelled the same smell on his breath too. The best way I can describe the smell is its similar to the smell of hand tools when the plastic starts to go bad. Is that anything like your husband smells?