A distinct odour associated with epilepsy?

demioyin · #1 12-23-2010, 03:33 AM

I have noticed that when my daughter has a series of seizures, her body brings out a distinct odour. Is this common, and what causes it? She had been on tegretol for years.

**Endless** · #2 12-23-2010, 06:53 AM

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/...-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.

**Bernard** · #3 12-23-2010, 01:10 PM

Check this out: Seizures due to Ammonia

Minkels · #4 12-23-2010, 05:24 PM

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?

The Following User Says Thank You to Endless For This Useful Post:
demioyin (12-25-2010)

The Following User Says Thank You to Minkels For This Useful Post:
demioyin (12-25-2010)