New here to the forum but not to epilepsy

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!

E

empath06

New
Messages
10
Reaction score
0
Points
0
I have had seizures since I was 17 and I am 54. I have had every type of seizure imaginable. I have had staring spells, grand mal, petit mal, jackson,, (I think that is the right term but not sure, and others that I cannot remember due to the dosage of medicine I am on. I have something called a vagus nerve stimulator which helps me counteract the auras and together with the meds it works good but the sleepiness from the meds drives me nuts. I don't know if I should ask to go off some of my meds and take a chance at a seizure or not. So far I have not had one in 3 months but I need to take a nap every day or I get huge headaches. I have hydrocephalus which in lay terms is water on the brain. This is where my seizures came from. I am just glad that I found this place where I can vent emotions. I guess I lucked out. Whomever brought me here..thanks. Oops now I remember...it was a therapist. Anyway I am glad to be here. I am Tom
 
Glad you're here too. When I got my surgery for the Responsive Neurostimulator I thought I was going to be able to stop taking medication completely and just rely on the device but I was wrong. The surgeon said to just look at this as trying to gain more seizure control. That was a bummer. But he did tell me that if I went 6 months seizure free he would think about slowly reducing my medication dosages. I hope you have that chance. I still have a long ways to go. I know how icky those medicines are. Best wishes.
 
Glad to have here at CWE. The people here are great in sharing there experience and I have learned so much from them.
Feel free to ask any questions, vent when you feel like it.

You are not alone.
 
Welcome, and I hope to read more of your posts! Everyone here is awesome and it really does help to vent.
 
Hi empath06, welcome to CWE!

And hello from a fellow Mass resident!

Best,
Nakamova
 
Welcome I hope to get my seizures well under control. Mine just started in October shortly after my 19th birthday and just now actually starting to be tooken seriously.
 
Welcome to CWE

Hello and welcome!

You will find warm and knowledgeable members who do not judge. You are among friends, so feel free to ask questions and state your opinions.

Tom
 
is this true story or something that told to everyone with epilepsey...
this top eye surgon abot once or twice a year his little finger would go into spasm would last few seconds..so he had tests and it was epilepsy,so mild as to not need treatment and hardly even notice he had it,but because he was a surgon he had to give up years of training and job he loved and people dependent on him...
is this true story...but just go to show even mild form can be devastating
 
I hadn't heard the story about the surgeon. But I suppose if his hand movement was unpredictable and uncontrollable, then the risk would be too great for his patients (especially in something as delicate as eye surgery) and the liability would make him uninsurable.
 
You must log in or register to reply here.
Back
Top Bottom