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Does a seizure disorder = epilepsy?

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?

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*

Re: Does a seizure disorder = epilepsy?

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?

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?

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?

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?

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!

Re: Does a seizure disorder = epilepsy?

IT REALLY IS HARD TO SAY HOW LONG IT IS GOING TO BE TO CONTROL YOUR SEIZURES. EVERYONE IS DIFFERENT WHEN IT COMES TO FINDING THE RIGHT MED. ITS A CRAPSHOT (I THINK THAT THATS THE NAME OF THE GAME) THEY TRY MEDS UNTIL THEY FIND ONE OR COMBOS THAT WORK BEST FOR YOU. PLUS YOU HAVE TO ALSO REMEMBER NOT EVERYONE HAS THE SAME TYPE OF E.  YOURS THEY FOUND A SPOT ON YOUR MRI, MINE IS GENETIC WITH A CLEAR MRI, OTHERS HAD HEAD INJURIES, SOME FROM ILLNESSES THAT CAUSE E. THEN THERE ARE LOTS OF PEOPLE THAT THEY CANT FIND ANY REASON THAT THEY HAVE E.

AS FOR THE DOCTOR, LET HIM KNOW RIGHT UP FRONT YOU HAVE A LIST OF QUESTIONS FOR HIM.  MAYBE THEN HE WILL GO INTO IT FOR YOU THROUGHOUT THE CONVERSATION. GOOD LUCK FINDING A MEDICATION AS FAST AS POSSIBLE TO WORK FOR YOU!

 God Bless,

banffgirl

life is fragile, handle with prayer.

Re: Does a seizure disorder = epilepsy?

I believe a "seizure disorder" does equal epilepsy.  I have seizures weekly and the problem my Neurologist is having is the fact I have had 4 EEG's with 2 normal and 2 abnormal.  Because of this she has decided to conclude I have both epileptic and non-epileptic seizures.  This has made it difficult to find medication to control my seizures.  I was diagnosed about 14 months ago and I am on my 4th medication.  And of course because my EEG results are 50/50 so to speak, Social Security has denied my disability claim despite their Blue Book.

Re: Does a seizure disorder = epilepsy?

I totally understand this. I had my first seizure when I was 26 in 2002 and I have had MRIs, EEGs, CT scans and no one has found anything and until 2005 I had I think maybe 8 tonic clonic seizures, but the neuro never said epilepsy. I used to talk during some of these episodes and really freak my ex-boyfriend out. But I would also convulse and say I was dying and these never lasted never longs and sometimes I even remember shaking before I would blackout. She did put me on 2500 mgs of Depakote. I gained a lot of weight and nothing worked. Until I got out of a super stressful relationship. I have not had another seizure since and I thought it was done. Now it seems they have changed. In the past 2 weeks. I have had two episodes -- not tonic clonic. I don't know what these are. I have a new neuro. I haven't seen him since August. He changed me to Topamax which I am on 400 mgs. He thinks I should come off all seizure med. He doesn't seem to believe I need it. I'm terrified of having another seizure. And in the past two weeks. I have had episodes where I remember feeling sort of strange -- my friends say they are talking to me and then I sort of space out. I remember talking to them. I remember feeling strange and they say I look I am going to faint. And I'm totally unresponsive and staring for a few minutes. That part I don't remember at all. And then I come back and I remember everything okay. I don't know what this is. And I'm scared everything is coming back. I am super stressed out because now I'm close to another break-up and I am supposed to defend my dissertation soon. And I don't even want to admit I have a seizure disorder because I never had them before 2002.

Re: Does a seizure disorder = epilepsy?

I can relate. my husband is 34. never had a seizure in his life. Christmas Day 2007 he had a grand mal seizure and was taken by ambulance he spent 4 days in hospital while they did multiple tests. only one that came back abnormal was eeg showed abnormal brain waves.  The doctor he seen was really rude and insentive only would give him depokote and told him he had epilepsy.  We did multiple eeg and increased medicine everytime and no better eeg the next and he had very bad mood swings on medicine. so we went to another neurologist and they put him on keppra thought was working but he had another grand mal seizure on Halloween 2008 so doctor increased medincine he now talking 1000 mg tablets three times a day.  He had another seizure saturday.  We knew it was coming on he started twitching and shaking and he gets really bad indigestion right before. belchs really loud and deep.  he took another keppra like doc said it did not stop symptoms two hours later he had a seizure.  we see doctor on thursday.  hope he can switch his medicine to somthing that will work.  THis doctor said he had a seizure disorder but no reasoning on what causes it.  Thinks he was born with it . Why did it wait 33 years before a seizure. None of this makes any sense to me. my husband has always been so healthy.  He was in the military and he got routine checkups.  never was sick.  He is not overweight very active.  I feel like my life is falling apart my daughter has hearing aids at 8 yrs old, my son was born with problems and has had 5 surgeries and has to have daily eniemas he is three . and now this with my husband. why me.  i wish we could get this under control i have the image of the seizures all the time. its devasting for me to watch him suffering. and the kids get so upset also. 
Any advise or thoughts would be appreciated.

Re: Does a seizure disorder = epilepsy?

anytime your siezures are continous, the er is the place to go, next time dont wait 4 hrs though, anytime its 30 min and still going on go to the er. thats the medical point the doctors say to go. as for in the er, iv dilatin or there is a drug which is in the dilatin family actually for iv use to stop siezures in the er. but that is for emergency use. it will work short term. but if i take dilatin it doesnt do anything. klonopin is used for siezures and anxiety. i take a small dose of that for anxiety now but it searted out for siezures last fall.

i am in agreement with the poster above, forgot her name, terrible memory! epitologists who are neuros who specialize in epilepsy are the best docs to go too. also i stopped going to one because he was always in and out of the room so quick i had to rush thru my list and couldnt remember the answers. now i have a great doc who after 5 yrs i am finally getting more cntrol over my siezures, still not controled but much better!!!! i thank God for delivering me to this doc, he spends so much time with me at each office visit till he knows i am clear on everything. he doesnt book lots of patients over each other so he can. he also teaches about epilepsy at the main medical university here. as of your clear eeg, that 20 mins out of 24hrs thats why i called it a snapshot in what i wrote up ablove. 

 

God Bless,

banffgirl

life is fragile, handle with prayer.

Re: Does a seizure disorder = epilepsy?

hi my lil boy is 5 and he has some sort of seizure isssue thay cant seem to diagnos a whole year later but we finally got  a new doc who seems to be making progress  at our first appt he explained to us that changes in his everyday routine might trgger seizures even while he is medicated  meaning that if he gets 8 hours of sleep at night for three nights in a row and then only gets 4 hours of sleep his brain will feel deprived and the medicine will have less of an effect than if he ws fully rested so be very careful with you routine it really can effect your seizures i am still really learning about this whole seizure thing even though my husband has it my 7 year old daughter has it and now my baby has it too  just remember take the meds as directed and remember if the doctor isnt helping you then you can always find a new one its your choice so dont feel pressured good luck and i hope things change for you for the better

Re: Does a seizure disorder = epilepsy?

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?

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?

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

Re: Does a seizure disorder = epilepsy?

Yes it does but it not as bad as you would think.  And as for your doctor changing your meds and taking you off of Dilatin and putting you on Lamictal I think will be much better for you. I was on Dilatin and it did not help me out at all but now I am on Tegretol, Phenobarbital, and Lamictal and I am doing better now than I ever have.  I have been on so many different medications that finally there are 3 that work well for me.  I also had 2 brain operations, and I have what they call a Vagus Nerve Implant which has helped me out with the meds I am on more than anything.  I hope I have helped somewhat and wish you luck on your seizures.

 

 

Re: Does a seizure disorder = epilepsy?

The efficacy of the meds is all about the levels - not always the type.  Just FYI so you keep on top of your levels.  The theraputic range is a "range"  You have to discover the number that works for your body - not the general range.  Good to hear your seizures are under control.  Happy New Year!

Re: Does a seizure disorder = epilepsy?

Hi mom2su!  Yes, ideopathic seizure disorder = epilepsy.  :)  You're actually one of the fortunate ones, as you actually had some seizure activity during an EEG. :)  Not everyone does. Me being a prime example. :)  Sounds as though you may have several types of seizures, since you are showing simple and complex.  That's probably why you're on more than one med.  Now, please realize that it may take a while for you to find a med or combo of meds that work for you.  Also, meds only work for about 60-70% of people with epilepsy.  In the meantime, you might want to make certain that you are doing the following:

1. Get 7 hours of sleep each night.

2. Eat healthy.  (Don't skip meals, eat at least 3 times a day, and try to replace the starchy or sugary foods with healthy whole grain alternatives.)

3. If you drink alot of caffeine, stop.  (Seizure meds are designed to slow the brain's activity,and things like coffee or energy drinks are designed to speed them up.  The same goes for OTC antihistamines.)

4. Make sure you find healthy ways to deal with stress.  (yoga, meditation, exercise, prayer, etc... )

The reason I suggest those 4 lifestyle changes is because they directly relate to the 4 most common triggers for seizures.   So good luck, and make sure that you are honest with your doc.  

 

PS=OH!  I forgot....If you are of childbearing age, or just entering menopause, you might want to keep track of your time of the month.  Some women find that their seizures are triggered by hormone fluctuations.

And, if you haven't had kids yet, make sure you tell your doc whether you ever hope to.  That may effect the kind of meds they pick for you.

Re: Does a seizure disorder = epilepsy?

Yes it does epual epilepsy. Now I have had epilepsy for 9 years. I was first put on Tegretal it didn't work so they put me on both Tegretol and Depakote which didn't work either. So they said well let's try Lamictal 150 2x a day. And it has been working wonderfully. The only time I have an episode is if I don't have my medication for more than a day. Which rarely happens. But I would not switch to another medication. The only thing we can assume caused me to have seizures is when my family and I live in Aurora,Ill I had to go to the dentist to get a tooth pulled and something told me that something bad was going to happen. Well as my mom was writing out the check I passed out hitting the floor hard. My glasses flew to the other side of the room. They refused to let my mom use the phone to call 911, and my ex stepfather. It was the worse day ever. They didn't even apologize for their wrong doing. We think they gave me too much novacaine.I have learned to deal with what I have and accept it but I wish I didn't have it. Each seizure takes away my memory for a few days. I just hope none of my kids have to go through this. Just make sure you do your part in taking your meds when youre supposed to and do whatever the docs tell you to do. Eat healthy, eliminate caffiene, try not to get to stressed out and find a healthy way to deal with it. Its all easier said than done but it's the best thing to do to help control seizures. Also if you feel like you're going to have one lay down immediatley I made the mistake of walking to my friends car to lay down instead of laying down right where I was and I ended up falling to the floor face first and I ended up chipping my 2 front teeth. One if halfway gone the other is missing a corner. It's embarrassing to talk to people knowing theyre trying to figure out what happened to my teeth and then have to go and explain it to people is even worse.

Re: Does a seizure disorder = epilepsy?

I too expirience some temp. memory loss after a seizure for a day or two. It sucks. I have a very familiar story, and I have learned to lay down right away! Wher eyou were trying to get to the car, I was going upstairs to lay down on my bed...I didn't make it up the stairs :/. I didn't break anything that God, but I just was sore for a week. Eek!!

Re: Does a seizure disorder = epilepsy?

I have a seizure disorder, and I too was not given much information on the exact kind of seizures I have. I started with Topamx, which was horrible, and now I am on Tegretol and it seems to do the trick for me. I do know my seizures are mostly on the left side of my brain, thats it. If I tell someone, I say I have a seizure disorder, and I describe it as epilepsy.

Re: Does a seizure disorder = epilepsy?

Most of the time a seizure disorder = epilepsy. The left side of the brain sounds like Complex partial seizures...the most common type of seizure.

Non-epileptic seizures or "seudo seizures" do occur; although they are extremely rare. You had your EEG test; so your neurologist knows if they're epileptic seizures. Tell him you demand an answer. Chances are extremely high that you do have epilepsy.

The reason most neurologists don't like to use the word, epilepsy is because of the stigma associated with it. You do deserve to know the truth, and the treatments available to you.

You can find more information at the Epilpesy Foundation of America; www.EFA.org.

Re: Does a seizure disorder = epilepsy?

I never knew what to call my condition for 13 years but after reading the definition of what constitutes the title of epileptic I fit in there as I have had dozens of breakthroughs though I was heavily medicated on pheno and dilantin.

Re: Does a seizure disorder = epilepsy?

Hi...

I am brents gurl and I wanted to ask you some things about Brent.

Brent had a tonic clonic seizure one year and one month ago and then again 3 days ago, on wednesday. That is all of the seizures that he knows of. I have not heard about or read about someone that has seizures a year apart. Sometimes Brent gets real nervoius and sometimes over the top angry. When he had those seizures he wasnt either of those things but could they be related?

Any help would be appreciated.

 

Re: Does a seizure disorder = epilepsy?

Hi Brents Gurl. My daughter had her first seizure at 13 and went 4 years before having her second grand mal and has had as many as two in a months time. So, this is not at all unusual that he went an entire year seizure free. Is he on an AED? Was he sleep deprived when these seizures occured? Did he have an abnormal amount of stress prior to these seizures? Or was he overly anxious for some reason? There are many triggers but these are a few of my daughters. Emotions can most definitely be a factor for triggering a seizure in epileptics.

Good luck & take care, Karen

Re: Does a seizure disorder = epilepsy?

You are definitely a patient.  I had no idea what was going on.  I worked in the field of Neurology and when I had a sz.  People would look at me and then I realize I had one.  I was not aware of my simple partials,  I would look at a patients EEGs and see MRIs and CTs and see normal and abn  cases and hear awful things happening to patients but when I would go to my Epileptologist, I felt he wasn't listening.  I had an idea of e-mailing the Dr. the information prior to appt. and that did the trick.  He had a copy and I had a copy of what I wanted to relate.

My MRI was abnormal and I have had several done and this was done specifically fine slices of the brain and they found my abnormality.  My EEG is abnormal too.  I was astonished.  I do the same things as most people do except I do not drive.  I am raising 2 teenagers.  I work out 4 miles a day weather permiting.  I try to act and do things normally too.  Szs once in a while get in the way.  I have a VNS.  I have had 2 surgeries and recently while in the hospital while they were monitoring me via EEG they noted my unusual szs and abn MRI.  Life is a Festival!  The abn. was found below my surgical removals and was believed to have occured during Gestation! I didn't know I had seizures until I was in my teens.  When I was young I had no real health problems.  The neuro told me it can happen to anyone like that.  It can be detected by a special MRI. 

I wish you the best!

Re: Does a seizure disorder = epilepsy?

 

Yes seizure disorders are defined in general as epilepsy.   It took me about a year to acept the  fact.  Now I am ok with it.

 

Encf 

Re: Does a seizure disorder = epilepsy?

Idiopathic generalized epilepsy (IGE) is a group of epileptic disorders that are believed to have a strong underlying genetic basis. Patients with an IGE subtype are typically otherwise normal and have no anatomical brain abnormalities. Patients also often have a family history of epilepsy and seem to have a genetically predisposed risk of attack. IGE tends to manifest itself between early childhood and adolescence although it can be eventually diagnosed later. The genetic cause of some IGE types is known, though inheritance does not always follow a simple monogenic mechanism. That is something that i found on the net for u..

Re: Does a seizure disorder = epilepsy?

Im 16 and had my first seizure this past year. They told me that since i had had only one seizure then it was a seizure disorder but then i had another one and then it turned into epilepsy. One seizure it is a seizure disorder but two or more is epilespy (at least that was how it was explained to me). I was on lamictal xr as well and it took forever to increase and i was doing well on my dose until they thought i was having absent seizures. a week later after the increased my dose of lamictal i had another seizure. They dont really know what kind it was they think it was some kind of absent plus a little regular one. I hope they figure everything out for you and you dont have to have another one to know if it is epilepsy.

Re: Does a seizure disorder = epilepsy?

Yes, that is how it was explained to me too with my son. But they never tell you to look into why you are having the seizures in the first place. I would see if there is a reason you are suddenly having seizures.

Re: Does a seizure disorder = epilepsy?

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?

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?

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!

Re: Does a seizure disorder = epilepsy?

Maybe. There is so little they really know about the brain and how these drugs work, or what causes them in the first place. I also felt like a Lab Rat, but after 1 year on Lamictal I feel better, however there are a few break throughs which were minor compared to a few grand mals and simple complex variety.

I never lost my licence, but it came close. I live in NJ and the laws are TOUGH. My Doctor filled out the form to DMV before he took my co-pay. I feel I am stable so I sort of leave out every minute detail when I speak to my doctor. Not cool I know, but I am the bread winner and I must drive so I watch my triggers, sleep well, stay hydrated, excercise and all of it.

Like everything, this is a process. I had a PET which confirmed what everyone up to that point felt was so so. I also had one abnormal spike in my EEG, so that was enough for me. Ending up in the hospital was a real terror, so I would have to say anything more then two or so seizures indicated epilepsey. If you have two the chances are overwhelming you will have more. Trust me.

Whatever it's called just make sure you try to control it and be careful.  

Re: Does a seizure disorder = epilepsy?

good for you.  Keppra has been one of the best meds I have been on. I have a tollerance for many meds and I take more than is recomended but it does the job I need done. My seizures are shorter in length and focus in shorter. I have used the generics too and they work just as well as Keppra and the cost is less.

Re: Does a seizure disorder = epilepsy?

I was diagnosed with a SD when i was a senior in high school most likley attributted to misuse of alchol with other substances. Ater repated seizures over the years..i.e. on going for a period of time. My neru told me that after a period of time it is no longer considered a SD but E. I dont not know the basis for the time table and for all i know maybe thats just his personal interprtation of the matter. i never tried digging further to find any factual medical documentation to the matter. Thats my two cents hope it helps.

Re: Does a seizure disorder = epilepsy?

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?

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?

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. 

 

 

Re: Does a seizure disorder = epilepsy?

I began and went through the slow process of getting established on Lamictal. I have now been taking it for over a year (200mg twice per day) along with Topamax, and they control my seizures well. My only complaint is some short-term memory loss which I believe is related to the Lamictal. Also, I was told by both my internist and my neuro that if one has one seizure, it's called just that...a seizure. If there are more seizures, it's called epilepsy.

Re: Does a seizure disorder = epilepsy?

Your neuro may be telling you that because he wants more information. Which you can give him by using the diary at the top of this page. If you go to your internet explorer type in idiopathic seizure disorder and see what you get. That does come up as epilepsy.

Diabeties can also cause seizures in some cases.  But the EEG showing seizure activity may be epilepsy

Understand that a seizure is an electrical impulse entering the brain wrong. That impulse starts a domino effect and lasts until the dominos have fallen or the medication acting like you finger being put between the dominos which stops the donimos from falling.  As for being moved from one medication to another, That happens to lots of us and in most cases there are few if any problems. I know as the saying goes "been there done that". What your neuro may be doing is looking at the information he has and trying to find the meds that will work for you and stop your seizures.

One thing you might do is go to the top of this page and use the diary. In the diary you can set your med up. It has a place for side effects also. I use the notes section to note the seizures I have and what I think might have caused them. I had a cluster today at about 1:30 it was about 4 seizures which lasted about 30-45 seconds focus time was about the same. The keppra I take is the medication that has shortened the length on time in the seizure and focus time is also shortened. This set of seizures was probably due to heat and being out in the humidity. I wrote that down in the diary. It has where you took your meds or forgot to take them as well as taking additional medication. The other thing about it is it can be sent to your neuro or you can download it and take it to him yourself.