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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 mom2superkid on Sun, 2008-03-30 - 19:42

Thanks!  I started with the Keppra when I was first diagnosed.  My seizure activity seemed to increase or at least change.  4 weeks into the Keppra I had non-stop seizures for 4 hours and chose to go to the ER because I was beyond scared and exhausted.  In the ER I received a mego dose of Dilantin and so my neuro felt it would be best for my system to continue the Dilantin until he saw me two weeks later.

At my appointment he discussed with me why he did not like Dilantin and would like to wean me off.  Knowing that my seizures were not controlled by Keppra alone he suggested Lamictal because it is a cousin of Dilantin with fewer side effects.  The Dilantin and Keppra combo did take my seizures from 30 a day to 5-6 a day.  A marked improvement for me.  The fourth med (Klonopin) is to help me sleep.  Through my seizure journals I noticed a pattern of insomnia and then a marked increase of seizures.  

My neuro has explained many things (concerning meds mostly) but I have yet to receive an answer as to my types of seizures.  

I think I will take your advice and start a new thread.  Those of us forced to advocate for our health tend to be knowledgable way beyond the average public... even beyond many in the medical community.  When my son was diagnosed with Autism I also found this to be the case.

Thanks again!

Thanks!  I started with the Keppra when I was first diagnosed.  My seizure activity seemed to increase or at least change.  4 weeks into the Keppra I had non-stop seizures for 4 hours and chose to go to the ER because I was beyond scared and exhausted.  In the ER I received a mego dose of Dilantin and so my neuro felt it would be best for my system to continue the Dilantin until he saw me two weeks later.

At my appointment he discussed with me why he did not like Dilantin and would like to wean me off.  Knowing that my seizures were not controlled by Keppra alone he suggested Lamictal because it is a cousin of Dilantin with fewer side effects.  The Dilantin and Keppra combo did take my seizures from 30 a day to 5-6 a day.  A marked improvement for me.  The fourth med (Klonopin) is to help me sleep.  Through my seizure journals I noticed a pattern of insomnia and then a marked increase of seizures.  

My neuro has explained many things (concerning meds mostly) but I have yet to receive an answer as to my types of seizures.  

I think I will take your advice and start a new thread.  Those of us forced to advocate for our health tend to be knowledgable way beyond the average public... even beyond many in the medical community.  When my son was diagnosed with Autism I also found this to be the case.

Thanks again!

Re: Does a seizure disorder = epilepsy?

Submitted by mom2superkid on Sun, 2008-03-30 - 19:45
Oh, and my neuro is supposed to be the best in the state.  Five different doctors recommended him to me.  The only negative thing I've heard is that his pratice (with 5 docs) tend to rush people in and out.  This last appointment I came in armed with a written list of all my questions.  He answered every one except the types of seizures.

Re: Does a seizure disorder = epilepsy?

Submitted by angelicadawn on Wed, 2008-04-09 - 17:48

Hey all!

I am recently diagnosed with a "seizure disorder".  After about 5 years of having strange symptoms and not having any explaination for them I finally had an actual seizure.  I didn't loose consciousness during the first one and it happend on Christmas eve 2007 so they diagnosed it as a panic attack in the ER and sent me home.  I had to fight my way into my Dr.s office to get a referral to see a neuro - again- I had been to have an EEG, CAT scan, and MRI in 2006 which only turned up a spot on the brain that could cause seizures.  The first neuro that I saw said that my symptoms and the spot on my brain had nothing to do with each other yet he prescribed me Topamax which wasn't covered by my insurance and cost like $250 so I never filled the script and never went back to see that Dr. again.  Then after the seizure on Christmas eve I saw a different neuro and he said the exact opposite of the first Dr. that the symptoms that I was having were probably "mini seizures" and that the spot on my brain called a migrational abnormality was probably causing my symptoms indeed.  In between EEG's and neuro visits I had a Grand Mal seizure that I totally lost consciousness for more than a few minuets, however long it took for them to call the ambulance and for the ambulance to arrive, was how long I was out, I chewed my tounge and lip all up and must have hit my face on the table at the restaurant that we were at.  Thank God I wasn't behind the wheel with my two little ones in the car!  They got me to the ER and I immediately started having another seizure.  My short term memory was not working at all whatsoever and the side affects of the Dilantin they have me on 300mg are real fun!  I still feel like I could have had another seizure at any point especially if I wasn't on any medication.  I feel weird all the time and I'm not sure if its from the drugs or from the fact that my brain may be trying to seize again.  I am almost 30 and have probably had this spot on my brain my whole life and until now never really had any problems.  I haven't even been on Dilantin for two weeks yet and I have a laundry list of questions for my dr. and I hope that he has the time to spend with me to answer them.  After everything I have read here, I'm not too optimistic at this point, especially after hearing that it was so hard for them to get it under control for some of you.  I would just die if I had one at work, which I am still able to go.  I can't drive anymore which was hard enough news to swallow, and I have to be on medication for the rest of my life?!  I'm not real happy about it all.  So finding you all here was great!  Someone else who can relate.   I thank all of you for being here and I hope to talk with you again soon!

Hey all!

I am recently diagnosed with a "seizure disorder".  After about 5 years of having strange symptoms and not having any explaination for them I finally had an actual seizure.  I didn't loose consciousness during the first one and it happend on Christmas eve 2007 so they diagnosed it as a panic attack in the ER and sent me home.  I had to fight my way into my Dr.s office to get a referral to see a neuro - again- I had been to have an EEG, CAT scan, and MRI in 2006 which only turned up a spot on the brain that could cause seizures.  The first neuro that I saw said that my symptoms and the spot on my brain had nothing to do with each other yet he prescribed me Topamax which wasn't covered by my insurance and cost like $250 so I never filled the script and never went back to see that Dr. again.  Then after the seizure on Christmas eve I saw a different neuro and he said the exact opposite of the first Dr. that the symptoms that I was having were probably "mini seizures" and that the spot on my brain called a migrational abnormality was probably causing my symptoms indeed.  In between EEG's and neuro visits I had a Grand Mal seizure that I totally lost consciousness for more than a few minuets, however long it took for them to call the ambulance and for the ambulance to arrive, was how long I was out, I chewed my tounge and lip all up and must have hit my face on the table at the restaurant that we were at.  Thank God I wasn't behind the wheel with my two little ones in the car!  They got me to the ER and I immediately started having another seizure.  My short term memory was not working at all whatsoever and the side affects of the Dilantin they have me on 300mg are real fun!  I still feel like I could have had another seizure at any point especially if I wasn't on any medication.  I feel weird all the time and I'm not sure if its from the drugs or from the fact that my brain may be trying to seize again.  I am almost 30 and have probably had this spot on my brain my whole life and until now never really had any problems.  I haven't even been on Dilantin for two weeks yet and I have a laundry list of questions for my dr. and I hope that he has the time to spend with me to answer them.  After everything I have read here, I'm not too optimistic at this point, especially after hearing that it was so hard for them to get it under control for some of you.  I would just die if I had one at work, which I am still able to go.  I can't drive anymore which was hard enough news to swallow, and I have to be on medication for the rest of my life?!  I'm not real happy about it all.  So finding you all here was great!  Someone else who can relate.   I thank all of you for being here and I hope to talk with you again soon!

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