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28 yr old woman: had my first seizure, please help.
Thu, 11/04/2004 - 04:59hello out there. it feels so wierd writing on a forum about this. adamantly against telling my closest friends, but instead announce it anonymously on a bulletin board. okay. well, i experienced my first seizure three nights ago when i was sleeping. i woke my boyfriend up when i was in the middle of it and i don't recall being in it at all, except for the cut on my tongue and the next morning with a purple lip. so from heresay, my arms were shaking. my mouth was bleeding and i was foaming at the mouth. the next day i was a little confused. dizzy and mild headache. day one, major denial. i just went about my business working on projects and so on just as if it didn't happen. i told my parents who drove down three hours to see me for a few hours. made an appointment with a doctor and will be going in on thursday to get set up with a neurologist. so day two, the reality that i had a seizure sort of sunk in a bit. i couldn't fall asleep last night and i was really scared. and day three, today, i've been a bit upset. rather down. i've only told two of my close friends and my boyfriend knows of course, but i'm sort of going through the whole stigma thing. i mean, i'm wondering how much people are going to look down on me, or feel that they need to baby me or feel sorry for me. and with my boyfriend, i'm really worried that this may affect the future of our relationship. like how is he taking this on a subconscious level. if this could be the reason why we may not get married one day. i'm not sure if that makes sense. but basically, if people somewhere buried in the cobwebs, has a partial bias to the person they're with because of something like this. and i know, if he truly does love me, it wouldn't matter. so, i guess i'm just going through the first swings with all of this. also, are seizures the only symptoms? any good meds or ones to stay away from? if there's anyone out there has any advice, suggestions or personal experience with any of this, please let out a shout. thanks for reading my post.
;)
anonymous
Comments
RE: RE: 28 yr old woman: had my first seizure, please help.
Submitted by rithra1213 on Wed, 2004-10-20 - 10:24
RE: RE: RE: 28 yr old woman: had my first seizure, please help.
Submitted by mexican_fire on Wed, 2004-10-20 - 14:25
No, it is not all true. People who waste their time saying all that stuff, aren't worth your time.
having epilepsy doesn't mean that people will autmatically think less of you.
You are still the same person you were before you were diagnosed, and that should be all that matters.
THe negative stigma has mostly gone away, because after the early 70s it stopped. What is going on these days is just people's ignorance about it, because they don't have an understanding of what it is. They are scared of the word seizure or epilepsy, becasue alot of them think that they can catch it from someone who has it, and they can't, so don't let their stupidity and lack of better judgement pull you down.
The fact that you have lost as many jobs as you have may not be entirely related to epilepsy, because you said one thing that really got me, and that " I am giving up". That is a sign of a depressed person, and you may have let your depression get the best of you without you even knowing it.
People CAN NOT, and I repeat CAN NOT fire you for having epilepsy. It is entirely against the law to do, so there had to have been other issues for having lost those jobs, unless you spent more time at home recovering from having seizures than you did at work,THEN they have the right to fire you.
I took several classes on medical ethics, which is how I can dish out this, trying to be helpful to you, so you can see that you are not alone.
I also minored in psychology, as well.
DON'T GIVE UP!!! You are a person with epilepsy, not a disease. Don't waste your time on those others whos cause you greif, stress, and depression they are NOT worth it. Focus on us here, and we will be your support system. I belong to the EFA and mentor two people with epilepsy, and if you want, I could be yoru mentor, and then you can talk to me whenver you want, and ske whatever you want about epilepsy, or just talk. my ears are open as long as it remains within reason.
I am 31 and just got diagnosed this May, even though they knew I had it in March in the VEEG. I have 5 types of seizures. 3 are due to the epileptic syndrome called TLE. The Absence is left from not being treated as a child, and the Myoclonic sometimes appears with another seizure type, adn that is what it did.
I take 2 AEDs, one at the max dose and one pushing max. I have failed 7 other drugs.
I will never be able to come off my drugs either, because it wasn't caught in time.
It took 26 years to get something done about it, between my dad's side of the family adn the abuse they put me through, the school system lalbeling me as ADHD and demanding I Take Ritalin for 4 years, and my dad never allowed me to go see a doc even when I had menigitis.
I can't begin to write on here allthe abuse he did , but it was way beyond what anyone can think of for abuse. My "favorite" thing and I don't meant that, I am jsut saying that, is when he would pick me up by the neck at my jaw angle and just bash the hell out of my head on a wall for all he was worth until I was KOd or he wore himself out. He also would take a 2x4 and hit my head like it was a ball on a tee. He also drug me outside and up the attic steps some cold winter night after Ihad gone to bed, and kicked me off the landing---ifell 20 feet to the ground. again no doc visit, same with the time he broke my jaw hitting my head witha 2x4. I had to walk around like that until it healed. IT healed wrong adn 14 years later in 1999 I developed TMJ, and in 2001, I had surgery for it. IT didn't hold, and now the joint has to be replaced.
I go to counseling, because they made me upon released from the EMU, it is a great help.
I don't drive, can't work, and collect SSI and food stamps. I don't let any of it get me down.
I went in for surgery and come out not being able to have it done due to the fact that they uncovered the Absence and Myoclonic and yuo can't operate on the temporal lobe to relief those seizures, bcause you would still have them from ither parts of the brain, so I was in there for 9 days had all the pre-testing, and seized 4 times.
At least they got the info they needed to get me on the right drugs.
Don't let all this get you down. Having epilepsy isn't the end of the world. It should just make youd stronger, by virtue that you want to fight it back and become seizure-free someday.
Don't get mad at me.
Nancy
No, it is not all true. People who waste their time saying all that stuff, aren't worth your time.
having epilepsy doesn't mean that people will autmatically think less of you.
You are still the same person you were before you were diagnosed, and that should be all that matters.
THe negative stigma has mostly gone away, because after the early 70s it stopped. What is going on these days is just people's ignorance about it, because they don't have an understanding of what it is. They are scared of the word seizure or epilepsy, becasue alot of them think that they can catch it from someone who has it, and they can't, so don't let their stupidity and lack of better judgement pull you down.
The fact that you have lost as many jobs as you have may not be entirely related to epilepsy, because you said one thing that really got me, and that " I am giving up". That is a sign of a depressed person, and you may have let your depression get the best of you without you even knowing it.
People CAN NOT, and I repeat CAN NOT fire you for having epilepsy. It is entirely against the law to do, so there had to have been other issues for having lost those jobs, unless you spent more time at home recovering from having seizures than you did at work,THEN they have the right to fire you.
I took several classes on medical ethics, which is how I can dish out this, trying to be helpful to you, so you can see that you are not alone.
I also minored in psychology, as well.
DON'T GIVE UP!!! You are a person with epilepsy, not a disease. Don't waste your time on those others whos cause you greif, stress, and depression they are NOT worth it. Focus on us here, and we will be your support system. I belong to the EFA and mentor two people with epilepsy, and if you want, I could be yoru mentor, and then you can talk to me whenver you want, and ske whatever you want about epilepsy, or just talk. my ears are open as long as it remains within reason.
I am 31 and just got diagnosed this May, even though they knew I had it in March in the VEEG. I have 5 types of seizures. 3 are due to the epileptic syndrome called TLE. The Absence is left from not being treated as a child, and the Myoclonic sometimes appears with another seizure type, adn that is what it did.
I take 2 AEDs, one at the max dose and one pushing max. I have failed 7 other drugs.
I will never be able to come off my drugs either, because it wasn't caught in time.
It took 26 years to get something done about it, between my dad's side of the family adn the abuse they put me through, the school system lalbeling me as ADHD and demanding I Take Ritalin for 4 years, and my dad never allowed me to go see a doc even when I had menigitis.
I can't begin to write on here allthe abuse he did , but it was way beyond what anyone can think of for abuse. My "favorite" thing and I don't meant that, I am jsut saying that, is when he would pick me up by the neck at my jaw angle and just bash the hell out of my head on a wall for all he was worth until I was KOd or he wore himself out. He also would take a 2x4 and hit my head like it was a ball on a tee. He also drug me outside and up the attic steps some cold winter night after Ihad gone to bed, and kicked me off the landing---ifell 20 feet to the ground. again no doc visit, same with the time he broke my jaw hitting my head witha 2x4. I had to walk around like that until it healed. IT healed wrong adn 14 years later in 1999 I developed TMJ, and in 2001, I had surgery for it. IT didn't hold, and now the joint has to be replaced.
I go to counseling, because they made me upon released from the EMU, it is a great help.
I don't drive, can't work, and collect SSI and food stamps. I don't let any of it get me down.
I went in for surgery and come out not being able to have it done due to the fact that they uncovered the Absence and Myoclonic and yuo can't operate on the temporal lobe to relief those seizures, bcause you would still have them from ither parts of the brain, so I was in there for 9 days had all the pre-testing, and seized 4 times.
At least they got the info they needed to get me on the right drugs.
Don't let all this get you down. Having epilepsy isn't the end of the world. It should just make youd stronger, by virtue that you want to fight it back and become seizure-free someday.
Don't get mad at me.
Nancy
RE: 28 yr old woman: had my first seizure, please help.
Submitted by mexican_fire on Mon, 2004-10-18 - 15:44
My name is Nancy, and I was diagnosed as having TLE with other seizure types this March.
It sounds like you had a grand mal seizure in your sleep.
THere are several theories that could explain this.
First, you may have had a partial seizure, that because yuo were asleep you weren't able to feel the sensations that occur right before it, and it could have spread from its original focus to a larger area and caused a Secondarily Generalized Tonic Clonic seizure.
Another possiblity could be that you had a nocturnal GM of the primary type. Different meds and treatment are used for these.
The final theory could be that you just have primary GMs that happen whever they want, day or night.
I was also diagnosed as having adult on-set epilepsy, but they are now figuring out the longer we talk about my past history that I have probably had it since I was born.
My mom told me and my epi that I woud stiffen up from my head to me toes and then just wail, it would always occur afterI Was awoken, either naturally or by her to feed me.
My dad also severely abused me by picking me up and smaxhing my head on a wall, or usuing 2x4s to hit it like it was a ball on a tee, etc, so that never helped, adn he wouldn't EVER let me go the doc to get checked for ANYTHING. In his family that was a sign of weakness, so with his controlling methods he wouldn't allow us 3 kids to.
He would always tell me that I we were hypochondriacs, and his parents always said to leave them alone, they'll grow out of it. Right.
THe school sytem ignored it saying that it was a behavior issue and labeled me saying I was ADHD and demanded that I take Ritalin or I couldn't go into the 4th grade, so they put me on Ritalin, and boy did that mess stuff up.
They never once bothered to check into what the initial cause of the goofy behavior was, so it was undiagnosed/misdiagnosed all my life.
I have all 3 seizure types that go with TLE ( Temporal Lobe Epilepsy) Simple Partial, COmplex Partial, and Secondarily Generalized Tonic Clonic. The TCs don't occur very often, but I do have them.
I also have Absence, because it was never diagnosed or treated as a child, so now, I have it as an adult. I also have Myoclonic seizures along with the rest of this mess.
The last two were found during the VEEG this March.
I failed 7 other drugs--Tegretol XR, Tegretol, Chewble Tegretol, Carbamazapine, Carbatrol, Ativan, and Topamax.
Most of them are related to Tegretol.
I can only suggest that Tegretol, Dilantin, and Depakote/Depakene are the best ones for GMs of the primary type.
Topamax, Lamictal, Keppra, Tiagabine, and Neurontin are among the best ones for Secondary TCs.
I take 3600 mgs of Neurontin for my partial seizures, and 1000 mgs of Depakote for the generalized seizures--Absence and Myoclonic.
All drugs have side effects until theyreach their level in your blood. SOme drugs cantake weeks, others only hours, and the side effects are time limited to 3-5 days.
Most of the AEDs will produce 1-3 side effects that ocur wiht everyone that don't go away. Depakote makes people lose hair and tremble in the hands.
Topamax causes speech impairments, memory deficits, and kidney stones.
Tegretol and Dilantin cause problems with the liver and pancreas.
The list could go on all day, but I am at the library and only have 12 more minutes on this computer.
Nancy
My name is Nancy, and I was diagnosed as having TLE with other seizure types this March.
It sounds like you had a grand mal seizure in your sleep.
THere are several theories that could explain this.
First, you may have had a partial seizure, that because yuo were asleep you weren't able to feel the sensations that occur right before it, and it could have spread from its original focus to a larger area and caused a Secondarily Generalized Tonic Clonic seizure.
Another possiblity could be that you had a nocturnal GM of the primary type. Different meds and treatment are used for these.
The final theory could be that you just have primary GMs that happen whever they want, day or night.
I was also diagnosed as having adult on-set epilepsy, but they are now figuring out the longer we talk about my past history that I have probably had it since I was born.
My mom told me and my epi that I woud stiffen up from my head to me toes and then just wail, it would always occur afterI Was awoken, either naturally or by her to feed me.
My dad also severely abused me by picking me up and smaxhing my head on a wall, or usuing 2x4s to hit it like it was a ball on a tee, etc, so that never helped, adn he wouldn't EVER let me go the doc to get checked for ANYTHING. In his family that was a sign of weakness, so with his controlling methods he wouldn't allow us 3 kids to.
He would always tell me that I we were hypochondriacs, and his parents always said to leave them alone, they'll grow out of it. Right.
THe school sytem ignored it saying that it was a behavior issue and labeled me saying I was ADHD and demanded that I take Ritalin or I couldn't go into the 4th grade, so they put me on Ritalin, and boy did that mess stuff up.
They never once bothered to check into what the initial cause of the goofy behavior was, so it was undiagnosed/misdiagnosed all my life.
I have all 3 seizure types that go with TLE ( Temporal Lobe Epilepsy) Simple Partial, COmplex Partial, and Secondarily Generalized Tonic Clonic. The TCs don't occur very often, but I do have them.
I also have Absence, because it was never diagnosed or treated as a child, so now, I have it as an adult. I also have Myoclonic seizures along with the rest of this mess.
The last two were found during the VEEG this March.
I failed 7 other drugs--Tegretol XR, Tegretol, Chewble Tegretol, Carbamazapine, Carbatrol, Ativan, and Topamax.
Most of them are related to Tegretol.
I can only suggest that Tegretol, Dilantin, and Depakote/Depakene are the best ones for GMs of the primary type.
Topamax, Lamictal, Keppra, Tiagabine, and Neurontin are among the best ones for Secondary TCs.
I take 3600 mgs of Neurontin for my partial seizures, and 1000 mgs of Depakote for the generalized seizures--Absence and Myoclonic.
All drugs have side effects until theyreach their level in your blood. SOme drugs cantake weeks, others only hours, and the side effects are time limited to 3-5 days.
Most of the AEDs will produce 1-3 side effects that ocur wiht everyone that don't go away. Depakote makes people lose hair and tremble in the hands.
Topamax causes speech impairments, memory deficits, and kidney stones.
Tegretol and Dilantin cause problems with the liver and pancreas.
The list could go on all day, but I am at the library and only have 12 more minutes on this computer.
Nancy