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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 Anonymous on Sat, 2008-03-29 - 20:26

Sorry to hear of your difficulties but glad you found your way here to get some answer. While this site can give general info, start of list of questions for your doctor! Here's a few sections that may help as you browse around and you'll find plenty of support and info from people in the forums and chats!

http://my.epilepsy.com/epilepsy/understanding_seizures

http://my.epilepsy.com/101/101_epilepsy

http://my.epilepsy.com/epilepsy/medicine_use

See you around the site!

Epi_help

Resource Specialist

Sorry to hear of your difficulties but glad you found your way here to get some answer. While this site can give general info, start of list of questions for your doctor! Here's a few sections that may help as you browse around and you'll find plenty of support and info from people in the forums and chats!

http://my.epilepsy.com/epilepsy/understanding_seizures

http://my.epilepsy.com/101/101_epilepsy

http://my.epilepsy.com/epilepsy/medicine_use

See you around the site!

Epi_help

Resource Specialist

Re: Does a seizure disorder = epilepsy?

Submitted by banffgirl on Mon, 2008-03-31 - 01:06

hi christy,

idiopathic siezures are either genetic or of unknown origin. a lot of people who have siezures dont have toncic clonic seizures. the definition of epilepsy is having more than 2 siezures. below is straight from this website onwhatis epilepsy? 

Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.

The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. The word "epilepsy" does not indicate anything about the cause of the person's seizures, what type they are, or how severe they are.

i know its really hard at first to except the idea of having epilepsy if you havent had it all your life. it was hard at first for me just going from abscence as a child to grande mal as they were called at 25yrs old. but then once they were controled i was ok though i didnt talk about it much. back in the 80s it was harder than now.

my eegs have always showed some siezure activity, even when i was completely controled. now i have constant siezure activity.actual siezures can change over time. i started having complex,  partials  and abscense again at 45. then the complex and partials changed to tonic clonic. now that i am on new meds and have a vns, it has now been over a week since i had a tonic clonic and my complexes and partials are back.

i started lamictal in dec took 2 months to switch from zonegran and i can finally think clearly again. keppra is a good drug for some but i was moody on it, right now i am getting weaned off of it to get on topamax since it will take care of my migraines as well.

dilantin didnt do well with me. finding the right drug for you is trial and error. the whole problem is different meds work differently for everyone. at one point if your doctor needs more info on where your siezures start and end, he will do a veeg, which is a video eeg in the hospital that monitors you over numerous days instead of a quick snapshot of the beain wave in a regular eeg.

you might not find yourself in a textbook, but probably very few of us are. epilepsy is unique to everyone because our brains are unique. we all have our own set of brainwave patterns that show whats going on in our brains. as you think of questions write them down, then next time you see the neuro, take it with you. also if you have any major concerns between appts, call the neuros office. my epitologist will call me back to address concerns.  

 God Bless,

banffgirl

life is fragile, handle with prayer.

hi christy,

idiopathic siezures are either genetic or of unknown origin. a lot of people who have siezures dont have toncic clonic seizures. the definition of epilepsy is having more than 2 siezures. below is straight from this website onwhatis epilepsy? 

Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.

The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. The word "epilepsy" does not indicate anything about the cause of the person's seizures, what type they are, or how severe they are.

i know its really hard at first to except the idea of having epilepsy if you havent had it all your life. it was hard at first for me just going from abscence as a child to grande mal as they were called at 25yrs old. but then once they were controled i was ok though i didnt talk about it much. back in the 80s it was harder than now.

my eegs have always showed some siezure activity, even when i was completely controled. now i have constant siezure activity.actual siezures can change over time. i started having complex,  partials  and abscense again at 45. then the complex and partials changed to tonic clonic. now that i am on new meds and have a vns, it has now been over a week since i had a tonic clonic and my complexes and partials are back.

i started lamictal in dec took 2 months to switch from zonegran and i can finally think clearly again. keppra is a good drug for some but i was moody on it, right now i am getting weaned off of it to get on topamax since it will take care of my migraines as well.

dilantin didnt do well with me. finding the right drug for you is trial and error. the whole problem is different meds work differently for everyone. at one point if your doctor needs more info on where your siezures start and end, he will do a veeg, which is a video eeg in the hospital that monitors you over numerous days instead of a quick snapshot of the beain wave in a regular eeg.

you might not find yourself in a textbook, but probably very few of us are. epilepsy is unique to everyone because our brains are unique. we all have our own set of brainwave patterns that show whats going on in our brains. as you think of questions write them down, then next time you see the neuro, take it with you. also if you have any major concerns between appts, call the neuros office. my epitologist will call me back to address concerns.  

 God Bless,

banffgirl

life is fragile, handle with prayer.

Re: Does a seizure disorder = epilepsy?

Submitted by freedom_now on Tue, 2008-10-21 - 02:08

hi christy 

 

yes it dose but it's not so bad.... i know what you are going through with trying new meds. i started having sizures when i was 8 years old the doctor i had at the time put me on phenobarbital i was stoned out of my mind at 8 i have a lot of blank spots in my child hood then when that didn't work he sent me to another doc. and  they put me on tegratol but i had to do the whole weaning process to the doctor told my mom if they took me off my phenobarbital to fast it could kill me. they put me on lamitcal later as an add on but they tried putting me on topamax first that drug drove me crazy the worst my fingers ,toes,nose and even my lips went numb and it messes with your vision.  but now after 26 years i am only on 600mg of lamitcal a day :) but that was a very very very slow and hard process at times i was on 1100mgs a day of tegratol and 900mgs of lamitcal a day  youw will survive with your sanity in tact i promise

the reason i have sizures is because i had a stroke as i was being born there is a little bit of brain damage but i am a very lucky person i only have sizures learning disabiltys and slight nerve damage on the right side of my body.

i know it dosen't seem like it right now but with the right medicane it dose get better sizures can make life harder  but grand mal sizures make it worse  oh i forgot to tell you what i have

 i have a complex partial seizure disorder

sorry about the spelling that;s part of the learning disabiltys

good luck

hi christy 

 

yes it dose but it's not so bad.... i know what you are going through with trying new meds. i started having sizures when i was 8 years old the doctor i had at the time put me on phenobarbital i was stoned out of my mind at 8 i have a lot of blank spots in my child hood then when that didn't work he sent me to another doc. and  they put me on tegratol but i had to do the whole weaning process to the doctor told my mom if they took me off my phenobarbital to fast it could kill me. they put me on lamitcal later as an add on but they tried putting me on topamax first that drug drove me crazy the worst my fingers ,toes,nose and even my lips went numb and it messes with your vision.  but now after 26 years i am only on 600mg of lamitcal a day :) but that was a very very very slow and hard process at times i was on 1100mgs a day of tegratol and 900mgs of lamitcal a day  youw will survive with your sanity in tact i promise

the reason i have sizures is because i had a stroke as i was being born there is a little bit of brain damage but i am a very lucky person i only have sizures learning disabiltys and slight nerve damage on the right side of my body.

i know it dosen't seem like it right now but with the right medicane it dose get better sizures can make life harder  but grand mal sizures make it worse  oh i forgot to tell you what i have

 i have a complex partial seizure disorder

sorry about the spelling that;s part of the learning disabiltys

good luck

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