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 Lisa in Missouri on Thu, 2010-12-16 - 00:48
It was explained to us that you can have a fever-induced seizure, or a seizure due to other issues; however, once you have multiple seizures (even small 5-second absence seizures), you are thought to have epilepsy. In terms of labeling, I think it's smart to remember you're not an epileptic. You're a PERSON with epilepsy. You are also a loving mother, a person with bills, or with a job to do, a woman who loves to cook, a friend, a daughter, etc. etc. This diagnosis doesn't have to define you. I hope you can remember that and not let it get you down. There are many people on here who are way more experienced than I am, but since I went through this process just about 3 years ago, I recall how confusing it all was in the beginning when you're looking for information. You'll often see terms related to seizures that are different from "grand mal" and "petite mal." If for nothing else, it removes the stigma somewhat, as the translation into French is (loosely) "big evil" and "little evil." Yes, just what you need - being thought of as a demon. NOT Doc said they're not really using those terms ("grand mal" and "petite mal") any more in the neurological circles. Some examples: There are "absence" seizures (staring spells lasting a few seconds). Absence is pronounced "AB-saunce." You'll read info about "tonic" seizures (stiff as a board, crash to the ground like a tree falling). There are "clonic" seizures (not a colonic referring to your buttocks and strange spa treatments - what I thought at first when I heard the term). A clonic seizue would involve intense shaking. Or... big drumroll... a "tonic/clonic" seizure. That's a combo move of stiffen up, fall to ground and shake like crazy. Scary stuff. And even if you're not suffering from all of those, it might help you sort through all of the many posts to find relevant info. Those are the seizures I'm familiar with. You'll see other terms which might need defining. Just ask. Lots of really sharp people on these boards. I've just been a reader and not a participant until this evening. Figured perhaps I could help in my own little way. Keep strong, and most importantly, always take your medicine! And always take it on time! GOOD LUCK!

Re: Does a seizure disorder = epilepsy?

Submitted by tbaldwin on Tue, 2010-12-28 - 20:34
Everyone, I had my first seizure when 17y.o. in '74,since then no medicine and a surgery to left temporal lobe was totally unsuccessful in reducing seizure frequency.I think my first two seizures were due to my time of smoking pot and PCP.The seizures since may've been caused by using anti-epileptic drugs. I had less seizures when I went from three AEDs to two medicines,I wonder if it'll ever be monotherapy & better again. Tim

Re: Does a seizure disorder = epilepsy?

Submitted by tcameron on Wed, 2010-12-29 - 18:39

I'm not a doctor, but the above info looks like epilepsy.  There are two types of seizure disorders:  epileptic and nonepileptic.  The epileptic seizure disorder shows seizure activity on the EEG.  Not always, but yours did.  Neurologists don't like to use the term "epilepsy" because of the stigma associated with it.  However, you have the legal right to know, and your doctor has to tell you if you demand an answer.  

I remember way back in the mid 1970's when I had my first convulsive seizure, I asked several neurologists, who would only tell me I had a "seizure disorder."  Finally, I called the EFA (800-332-1000).  They told me, "Yes, you have epielpsy."

Look at the first video on this website, it defines epilepsy.  Look at Dr. Fisher explain, "Johnny falling off his motorcycle."  Click on the Home button, just above Edit comment on this screen.  Scroll down to the middle of the next screen. Click on videos and podcasts.  That will lead you to the video.

There are several other medications to take besides Keppra.  Dilantin usually odesn't have side effects if taken at your dose.  One of these days, the magic pill will arrive.  Until then, you need to try different types of meds and let your neurologist know if you're experiencing side effects.  He might tell you to expect them for a couple weeks, but after that you should feel better.  Keep talking to your neurologist.   It's the only way he/she will know if the medication is/isn't working for you. 

 

 

I'm not a doctor, but the above info looks like epilepsy.  There are two types of seizure disorders:  epileptic and nonepileptic.  The epileptic seizure disorder shows seizure activity on the EEG.  Not always, but yours did.  Neurologists don't like to use the term "epilepsy" because of the stigma associated with it.  However, you have the legal right to know, and your doctor has to tell you if you demand an answer.  

I remember way back in the mid 1970's when I had my first convulsive seizure, I asked several neurologists, who would only tell me I had a "seizure disorder."  Finally, I called the EFA (800-332-1000).  They told me, "Yes, you have epielpsy."

Look at the first video on this website, it defines epilepsy.  Look at Dr. Fisher explain, "Johnny falling off his motorcycle."  Click on the Home button, just above Edit comment on this screen.  Scroll down to the middle of the next screen. Click on videos and podcasts.  That will lead you to the video.

There are several other medications to take besides Keppra.  Dilantin usually odesn't have side effects if taken at your dose.  One of these days, the magic pill will arrive.  Until then, you need to try different types of meds and let your neurologist know if you're experiencing side effects.  He might tell you to expect them for a couple weeks, but after that you should feel better.  Keep talking to your neurologist.   It's the only way he/she will know if the medication is/isn't working for you. 

 

 

Sign Up for Emails

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