Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Does a seizure disorder = epilepsy?

Sat, 03/29/2008 - 00:15

Greetings, all!

Six weeks ago I was diagnosed with "idiopathic seizure disorder." At my follow up appointment today I asked my neuro for my diagonsis and he said the same thing. He doesn't seem to know what kind of seizures I am having. The EEG showed seizure activity in various parts of the brain. The only thing we seem to know for sure is that I am NOT having grand mal seizures.

So, does having a seizure disorder = epilepsy? Is there a magic moment when a seizure disorder converts to epilepsy? I am not eager for a label, but I just would like to know what to call the stuff happening to me. My seizures change and seem to cover both the complex and simple partial seizure arena.

I am currently on Keppra 3000 mg and Dilantin 300 mg a day and I still have seizures. I have started the long process of starting Lamictal and in 8 weeks he will start weaning me off the Dilantin.

Anyone else have a seizure disorder? Any advice to long and slow process of starting and weaning meds. The side effects of my Keppra/Dilantin cocktail is driving me crazy. I can't tell you how excited I am to add another med to the mix. (Can you hear my cyber-voice dripping with sarcasm?)

Any advice or comments welcome. I've been reading everything I can about seizures, but I can't seem to find myself in any article or textbook. If my EEG wasn't abnormal I would think it was all in my head. (pun intended)

Thanks in advance!!

~christy

 

 

 

 

 

 

Comments

Re: Does a seizure disorder = epilepsy?

Submitted by Addibaby on Wed, 2010-09-08 - 18:59
Yes, that is how it was explained to me too with my son.  They are giving some really good advice down below here.  This is a really good site to find answers.

Re: Does a seizure disorder = epilepsy?

Submitted by brainpower on Tue, 2010-12-28 - 12:09
I was about your age when I had my first one.  I'm now 46.  I am also a rare find.  I've been on Dilantin for over 30 years.  There is a big hurry to take people off Dilantin and switch them to a new drug so be careful with your doctor playing or testing drugs on you for efficacy!  Do what works for you not the doctor!  And, in terms of having a seizure disorder vs. epilepsy, well, I was told I had a seizure disorder that appeared suddenly as a teenager and the label sticks.  Frankly, as long as you keep it in control, it doesn't matter what you call it.  Best of luck to all and don't forget that food acids and alcohol will affect your levels.  Since you are a teenager, I'd like to offer advise...don't let this rule your life!  Have fun, enjoy, and contribute to success.  I have seen too many people allow it to define them rather than you defining it. 

Re: Does a seizure disorder = epilepsy?

Submitted by cmunley86 on Fri, 2010-08-20 - 23:35
I think it does mean epilepsy. I guess I could have something like that, except my EEGs have came up normal, but they don't know what the cause of my seizures are. I guess I"m one of the luckier ones, so far I'm only on 2000mg of Keppra a day. The side affects aren't as bad now. So far I've been seizure-free for 6 months, and I will be getting my license back soon! Good luck with everything!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.