[Cedar]

I posted about a bad smell I had been smelling, that I related to my meds. My question is do certain meds. cause this? Does anyone know if it is coming from the chemicals or if somehow the brain is triggering this smell? I am badly bothered by it, none else smells it. No Dr. knows what to do.

Thoughts would be great or even links to sites on line.

Thanks, Cedar

[Porkette]

Hi Cedar,
Often when I have an aura sz. (simple partial sz.) I will smell a very odd smell like natural gas, deviled eggs, or a burnt odor. My epi told me this was all part of an aura sz. The foul smells only last a few seconds and they are gone. Could this be what's going on? Check out the following websites for more info. www.epilepsy.com and http://www.neuropat.dote.hu/neurology.htm click on epilepsy when main page comes up and look under simple partial sz. Here's wishing you well and May God Bless You!

Sue

[Cedar]

Hi I appreciate your thoughts on this. I have it for hours and I think it is something else. I have very sensitive smell senses. But I think it is something is triggering it or a brain/med chemistry is going on. Had it off an on for two months.
I just know it is foul and unpleasent. Never had this before in the 37 years I have had seizures. So it is odd and kinda unexplainable.
Will go to link you gave.

Thanks, Cedar

[Stocky]

Hi, I just "joined" . My daughter who is 7 was diagnosed with Epilepsy/generalized seizure disorder about 4 years ago. Her seizures are 99% under control, they are usually brought on by a fever and a quick spike in the fever.
She is on Lamictal twice a day 50mg each, Aderal 5mg once a day and Diazapam 2mg twice a day.She has sensory issues as well, hence the other meds.
Very recently she started complaing about an odor. Mind you she's 7 and she really can't describe it but she says " daddy it smells" . There have never been any seizures folowing the "odor" until yesterday.
Just after the smell she had what seemed like a seizure, and she was post-ictal for about 30 minutes .She slept in my wifes arms on the couch.
After she woke, somewhat groggy we went upstairs to take her temp. She was barely running anything, but we medicate with Tylenol and Motrin overlapping every three hours to keep the fever down. So as a precaution we were about to give her Tylenol when she seized again ,this time for 7 minutes ! She usually is 30 sec to 1 minute max. This was scary ,she turned blue and we called the ambulance.
Blah, Blah Blah.... The doctors know us in the ER and it was the usual routine etc.. to check her out.
She is 100% fine today. The odd thing was that the fever never registered above 100.0 . That's REALLY low to cause a siezure for her.

Do you guys think that the "smell or odor" is an aura that is preceding the seizure ?
Also, our neorologist at CHOP had not heard of the "odor" thing before.

[peppermint1]

Hi Stocky - Glad to mee you - I'm sorry about your daughter but I'm glad you found this board. I hope we can offer you assistance in some way.

For several years that foul imagined smell (usually BAD body odor , sometimes rotten food) hit me very, very hard for a day or two before a batch of partial complex seizures started.
My neuro told me that the bad smell auras are common.
I was sorry to see my auras go so seizures came without that precious warning.

[Porkette]

Hi Stocky,
Welcome to the forum! I'm sorry to hear your daughter had such a long lasting seizure. If your daughter has been sick with a virus or cold that can often cause a seizure just like a temperature can cause Febrile seizures (a seizure brought on by a fever.)
I've had absence (petit mal) , complex partial, and simple partial (aura sz.) for 35 yrs. I had surgery done twice to help reduce the sz.
My advice to you is to have your daughter see an Epileptologist (Dr. specializing in epilepsy) I've seen many different neuros over the yrs. and I found an Epileptologist is way ahead of all the neuros. I've ever seen and if you go to an Epilepsy Center usually at a University Hospital you will get the best help needed for your daughter.
If you haven't started keeping record of your daughters sz. get a calendar and write down what time the sz. happened along with a discription of the sz. by doing this often the Dr. can see a pattern as to what time of day/night or what days of the month a person is more likely to have any sz. Also take note of the weather and if there's a low pressure because some people with epilepsy have sz. when there's a low pressure. Keep your daughter away from anything with nutra sweet (aspartame) in it like diet soda. It's been proven that aspartame can cause more electrical activity in the brain and cause sz. for many people. You might want to have your daughter go on the ketogenic diet. This diet is to help control sz. The diet is high in fat but low in protein and carbs. It reduced a lot of my sz. and I take a lot less AED's (sz. meds) now that I'm on the diet. If your interested you can by the book titled: "The Epilepsy Diet Treatment" By Dr. John Freeman of Hopkins University. Here's wishing you and your family well. Check out these websites for more info.
www.epilepsy.com
http://www.neuropat.dote.hu/neurology.htm
When the main page comes up click on epilepsy.

May God Bless You,
Sue

[Ellie]

Originally Posted by Stocky

Hi, I just "joined" . My daughter who is 7 was diagnosed with Epilepsy/generalized seizure disorder about 4 years ago. Her seizures are 99% under control, they are usually brought on by a fever and a quick spike in the fever.
She is on Lamictal twice a day 50mg each, Aderal 5mg once a day and Diazapam 2mg twice a day.She has sensory issues as well, hence the other meds.
Very recently she started complaing about an odor. Mind you she's 7 and she really can't describe it but she says " daddy it smells" . There have never been any seizures folowing the "odor" until yesterday.
Just after the smell she had what seemed like a seizure, and she was post-ictal for about 30 minutes .She slept in my wifes arms on the couch.
After she woke, somewhat groggy we went upstairs to take her temp. She was barely running anything, but we medicate with Tylenol and Motrin overlapping every three hours to keep the fever down. So as a precaution we were about to give her Tylenol when she seized again ,this time for 7 minutes ! She usually is 30 sec to 1 minute max. This was scary ,she turned blue and we called the ambulance.
Blah, Blah Blah.... The doctors know us in the ER and it was the usual routine etc.. to check her out.
She is 100% fine today. The odd thing was that the fever never registered above 100.0 . That's REALLY low to cause a siezure for her.

Do you guys think that the "smell or odor" is an aura that is preceding the seizure ?
Also, our neorologist at CHOP had not heard of the "odor" thing before.

Stocky,

Hello and welcome!

I fully agree with Sue on going to an Epileptologist (moreso as the Neurologist isn't familiar with the odor thing). I was curious if they have done other testing on her? I'd suggest getting in to see a Cardiologist, Immunologist and Hematologist along with the Epileptologist. It may seem weird, but all 3 can do some extensive testing that could rule out or diagnose things that can be causing the fevers and/or seizures.

I'm curious as to how frequently she has high fevers. I also worry greatly about the duration of her seizures.

I would suggest going to an Epileptologist (with the epilepsy diagnosis, you wont even need a referral at most places). I think you'll find yourself pleased with their advanced knowledge when compared to a Neurologist. I'm willing to bet they will send you around to other 'ologists' for workups/tests to rule-out other things.

To clarify, I'm not questioning if she has Epilepsy, I'm thinking the fevers should be looked into as well. With her being so young, it's hard to have her explain things so she could potentially be having other seizures that aren't picked up on as easily (with or without a fever).

When I am upset, tired, stressed, etc. I will run a fever (can get as high as 103, and I'm 30). My son ran very high fevers (no seizures) and I ended up having to go to the above mentioned 'ologists' to have him tested, and later - myself. They told me frequent high fevers can cause scar tissue on the heart - and constant treatment of high fevers (tylenol and all of that stuff) can cause ascites(sp) on the liver (i think it was the liver, lol).

I've had lots of tests to see if my symptoms were a part of my epilepsy or enough to cause a bit of stress to trigger a seizure. I've got some mild heart problems, my immune system is kind of weak - but none of that is related to my epilepsy. However, they try to control it as it can trigger a seizure (stress, pain, colds and periods are my top triggers).

Hopefully that made sense, I'm sleep deprived and only had a cup of coffee so far so I'm still loopy.

Please, please keep us updated and stay in touch.

[Stocky]

Thanks for the feedback.
Her Neurologist from CHOP (Childrens Hospital of Philadelphia) specializes in Epilepsy. Actually he is now heading up a department at UCSF. We are probably going to continue under his care, even though we are in NJ.
She only gets the fevers when sick. They don't just appear out of nowhere. We are familiar with the ketogenic diet but have never seriously looked into it.
She has never been seen by aCardiologist, Immunologist and Hematologist .That may be something to look into.
Her most recent 20 min EEG was almost 99% clean. Just a few little blips lasting less than a fraction of a fraction of a second . That's how the doctor described it.
She's come along way since day one and after getting her off Depakote and onto Lamictal she's doing MUCH better.

thank you again for the insight and suggestions , I will look into everything you guys/ladies have suggested.