mystery seizures

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!

Messages
2
Reaction score
0
Points
0
i just started this today because i thought itd help with finding new friends, helping me figure out just what kind of seizures im having but some info about me... i started to have benign rolandic seizures when i was 10 when i was sleeping but i guess that was just hormones out of whack. they stopped for a few years untill i turned 13 it started one night after i came home from a concert talking to my girlfriend on the phone and i guess i fell to the ground and started seizing rushed to the hospital and all that during that year alone i had roughly 300 seizures they did all sorts of tests and couldnt find anything wrong with me i stayed for a week long ekg test had 1 or two seizures there they thought i was as they put "faking it" all the neurologists ive been to have givin me so many diagnosis about them . a couple doctors that are family friends that have witnessed my grand maul seizures say they are the real deal "eyes dialated, contorted hands, shaking violently etc" and its not uncommon for me to have more than 1 seizure at a time either...But all in all im tired of having this mystery epilepsy that no one is trying to figure out it causes me problems and my medical bills are astronomical. So id like the community's input on this please and thank you :)

p.s. all the ekgs say that there isint any abnormal brain activity and i dont think anyone would "fake a seizure" just so they could be stuck with 12k in bills
 
Hi snake8mouse, welcome to CWE!

I think you mean EEG rather than EKG (which is for the heart). Anyway, you're right -- the lack of a positive EEG doesn't mean you're faking or that you don't have epilepsy. EEGs don't catch every kind of seizure every time. Some seizure activity is too transient or occurs too deep in the brain to register. Quite a few CWE members -- who definitely have epilepsy -- have never had a positive EEG.

So while the EEG can be a useful tool to back-up or confirm an epilepsy diagnosis, or to try and isolate the area of the brain that's affected (for treatment purposes), it's not the determinant of an epilepsy diagnosis. A good neurologist should be able to make an epilepsy diagnosis based on the clinical symptoms alone. (Not to mention your prior seizure history!) It sounds like you need to find that good neurologist. Even if the neurologist isn't 100% sure of the diagnosis, a sensible treatment option would be a low dose of anti-seizure medication to see if it brings you relief.

Hang in there. Be persistent. Consider asking the doctors who have witnessed your seizures to help you advocate for treatment the next time you see a neurologist.

Best,
Nakamova
 
thanks for the reply and yeah i always get EKG and EEG mixed up because i had a lot of both before but its hard to listen to a good answer when so many doctors/neurologists ive seen have givin me so many "answers" so its really hard to figure out to say the least
 
I am so sorry to hear all that you have been through. I hope you will find a helpful doctor, very soon.

I know that anyone having more than one seizure can be labled with epilepsy and that what Nakamova says is true about the EEG.

Hopefully, you will receive proper recommendations or treatment even if you never know exactly what type of seizures you are having.
 
Hi Snake.

I've had seizures without activity on an EEG. I have also had seizures WITH activity on the EEG. They are still a mystery being that no one knows why or how I have them. Everyone is different. I am controlled with Kepra and Vimpat.

Welcome, BTW.
 
Back
Top Bottom