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Does a seizure disorder = epilepsy?
Sat, 03/29/2008 - 00:15Greetings, 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 mom2superkid on Sat, 2008-03-29 - 15:06
Thanks! I was diagnosed 6 weeks ago. I got really sick around Thanksgiving and I never got better. They couldn't figure it out since I didn't have obvious seizures. My 1st EEG showed nothing. My 2nd EEG (one week later) showed almost non-stop activity. Strange, huh? They found my activity in the left mid and posterotemporal lobe(s).
I am just guessing that my seizures are simple partial. My doc hasn't named them as of yet. Some of them involve convulsions of my upper body. Sometimes I "wake up" and realize that my eyes are closed and I am doing something strange (twirling my wedding ring, chewing my lips, etc.). During those I am aware of things around me but I don't realize what my body is doing. My other seizures effect my speech and I get very disoriented. Sometimes I am not aware of space or time.
I've had minor incontience issues during my really bad days. When I have them back to back they get progressively worse. Some days I wonder if I am having something like grand mals, (major convulsion) but I have not every completely passed out. I am not always responsive, but I can hear what is going on around me.
Thanks for your insights!!!
~christy
Thanks! I was diagnosed 6 weeks ago. I got really sick around Thanksgiving and I never got better. They couldn't figure it out since I didn't have obvious seizures. My 1st EEG showed nothing. My 2nd EEG (one week later) showed almost non-stop activity. Strange, huh? They found my activity in the left mid and posterotemporal lobe(s).
I am just guessing that my seizures are simple partial. My doc hasn't named them as of yet. Some of them involve convulsions of my upper body. Sometimes I "wake up" and realize that my eyes are closed and I am doing something strange (twirling my wedding ring, chewing my lips, etc.). During those I am aware of things around me but I don't realize what my body is doing. My other seizures effect my speech and I get very disoriented. Sometimes I am not aware of space or time.
I've had minor incontience issues during my really bad days. When I have them back to back they get progressively worse. Some days I wonder if I am having something like grand mals, (major convulsion) but I have not every completely passed out. I am not always responsive, but I can hear what is going on around me.
Thanks for your insights!!!
~christy
Re: Does a seizure disorder = epilepsy?
Submitted by mommy2kyra on Sun, 2008-03-30 - 18:10
Hello again Christy,
You are certainly a newbie to diagnosis! Are you working with a neurologist recommended by others? So many doctors don't seem to take the time to explain: diagnosis (what it means) or medications (why try, increase, add another, or switch). Research shows that most of us w/ E are just as smart as "normal people", and a lot of us are very involved in our treatment plan. So, there's no reason not to explain their reasoning. IMO, when a doctor makes treatment decisions without explaining rationale, maybe we ought to look for another doctor.
You are just beginning this road. It's only been 6 weeks on these meds (not long at all!). I would want the doc to tell me his reasoning for switching medication already. I would also want to know why I'm starting out on 2 medications. The dilantin treats generalized sz's as well as partial- have you had any generalized sz's? Is the neuro planning to put you onto lamictal, wean you off dilantin, & then keppra? What's he/she thinking? That's something I'd really like to know. Despite the keppra & dilantin, you're still having sz's, and that does stink. ((hugs)) to you! While you are new, I think an epileptologist (Dr. specialized in epilepsy) is best. They know all about sz's and treatment choices. It was a huge difference for me.
Okay..now that I've bored you w/ my opinions: You may want to begin a new thread asking what others do during their sz. Many people are always eager to share their typical sz experience. It is interesting that the 1st EEG didn't pick anything up, while it was busy just a just one week later. Not uncommon with women though. Many women have seizure activity impacted by the menstrual cycle. I, for instance, am vulnerable to seizures right before and through menses. Several other variables may have impacted your 2nd EEG- physical & emotional stress, as well as sleep deprivation are my personal biggies. I can't recall the other triggers- but do check them out.
Take care,
Heather :)
*refractory seizure surgery on left temporal lobe 03/06*
Hello again Christy,
You are certainly a newbie to diagnosis! Are you working with a neurologist recommended by others? So many doctors don't seem to take the time to explain: diagnosis (what it means) or medications (why try, increase, add another, or switch). Research shows that most of us w/ E are just as smart as "normal people", and a lot of us are very involved in our treatment plan. So, there's no reason not to explain their reasoning. IMO, when a doctor makes treatment decisions without explaining rationale, maybe we ought to look for another doctor.
You are just beginning this road. It's only been 6 weeks on these meds (not long at all!). I would want the doc to tell me his reasoning for switching medication already. I would also want to know why I'm starting out on 2 medications. The dilantin treats generalized sz's as well as partial- have you had any generalized sz's? Is the neuro planning to put you onto lamictal, wean you off dilantin, & then keppra? What's he/she thinking? That's something I'd really like to know. Despite the keppra & dilantin, you're still having sz's, and that does stink. ((hugs)) to you! While you are new, I think an epileptologist (Dr. specialized in epilepsy) is best. They know all about sz's and treatment choices. It was a huge difference for me.
Okay..now that I've bored you w/ my opinions: You may want to begin a new thread asking what others do during their sz. Many people are always eager to share their typical sz experience. It is interesting that the 1st EEG didn't pick anything up, while it was busy just a just one week later. Not uncommon with women though. Many women have seizure activity impacted by the menstrual cycle. I, for instance, am vulnerable to seizures right before and through menses. Several other variables may have impacted your 2nd EEG- physical & emotional stress, as well as sleep deprivation are my personal biggies. I can't recall the other triggers- but do check them out.
Take care,
Heather :)
*refractory seizure surgery on left temporal lobe 03/06*
Re: Does a seizure disorder = epilepsy?
Submitted by mommy2kyra on Sat, 2008-03-29 - 14:48
Hi Christy,
Yes, a seizure disorder is today's term for epilepsy. Idiopathic means that they don't know the cause of your E. While your doctor hasn't found the exact focal point (or areas), they have found sz's to be in one hemishpere.
My E was located on the outer portion of my hippocampus, and moved outward. Also within a small area of the left frontal lobe. I haven't had much luck with medications-changed meds many times, increased dosages-and still had seizures regularly. At that point, my seizures were diagnosed as "refractory", meaning that they could not be controlled medicinally. I then went into the hospital, to determine if I was a candidate for surgery. Getting to that diagnosis took a long time though.
When were you diagnosed with E? Neither keppra nor dilantin worked for me, btw. My best med (for sz control & general happiness) was depakote. Had a bad medical reaction after a couple of years--and was put on it's polar opposite, phenobarbital. Haven't gotten off since. It can be a bumpy road with these meds, effects, and breakthrough sz's.
Oh... and your sz's are primarily simple partial. Often, they automatically move to the complex partial level. Either way- partial- only involving one area of the brain (and not generalized). Partial seizures can secondarily generalize, and become "grand mals", especially when sz's are uncontrolled.
I hope that helps explain & makes you feel better. Almost all of us here do have sz disorders, and/or care for others who do.
Heather
*refractory seizure surgery on left temporal lobe 03/06*
Hi Christy,
Yes, a seizure disorder is today's term for epilepsy. Idiopathic means that they don't know the cause of your E. While your doctor hasn't found the exact focal point (or areas), they have found sz's to be in one hemishpere.
My E was located on the outer portion of my hippocampus, and moved outward. Also within a small area of the left frontal lobe. I haven't had much luck with medications-changed meds many times, increased dosages-and still had seizures regularly. At that point, my seizures were diagnosed as "refractory", meaning that they could not be controlled medicinally. I then went into the hospital, to determine if I was a candidate for surgery. Getting to that diagnosis took a long time though.
When were you diagnosed with E? Neither keppra nor dilantin worked for me, btw. My best med (for sz control & general happiness) was depakote. Had a bad medical reaction after a couple of years--and was put on it's polar opposite, phenobarbital. Haven't gotten off since. It can be a bumpy road with these meds, effects, and breakthrough sz's.
Oh... and your sz's are primarily simple partial. Often, they automatically move to the complex partial level. Either way- partial- only involving one area of the brain (and not generalized). Partial seizures can secondarily generalize, and become "grand mals", especially when sz's are uncontrolled.
I hope that helps explain & makes you feel better. Almost all of us here do have sz disorders, and/or care for others who do.
Heather
*refractory seizure surgery on left temporal lobe 03/06*