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stargazer
05-13-2005, 03:36 PM
I'm going to apply for a job at an epilepsy foundation, and I don't know a whole lot about the disease. I know that it's basically a disruption in the electrical impulses in the brain, which can then cause motor and verbal lapses, but I don't know how this can manifest itself*, or what treatment is available. How common is it? Can it have adult onset? What are some other issues that surround the disease?

*I do know that there are grand mal and petit mal seizures, and I have a Hollywood-idea of what the former are like; what are the latter like? Do they vary from person to person?

Thanks!

friedo
05-13-2005, 04:04 PM
Wikipedia has a pretty good overview here (http://en.wikipedia.org/wiki/Epilepsy).

Gaius.Cornelius
05-13-2005, 04:17 PM
Having suffered from epilepsy myself, I can certainly tell you that it can come on as an adult.

I was about 27 when I started having grand mal seizures and they continued for some 2 years with a frequency of every couple of weeks or so. After that time, it seems that I was put on the right combination of drugs. Since then, the drugs have slowly been reduced and I now take no medication and have suffered no seizures since. I am told that it is quite common for epilepsy to come and go quite mysteriously.

As I understand it, epilepsy covers a wide variety of symptoms many of which might not be recognised as a seizure.

The explanatoin I was given was that epilepsy is usually caused by an inbalance in brain chemistry. The neurons are on a chemical hair trigger - they need to be to work properly. But, an adverse inbalance makes a brain vulnerable to a runaway electro-chemical chain reaction that will only stop when the fuel runs out.

Don't rely on Holywood for information about anything. I find that "flashing lights" crap particularly anoying. A reaction to flashing lights is very rare and warnings before movies etc may be well intentioned but actually just misinform and stereotype.

As to what a seizures were like: you will have to ask somebody else, I wasn't there. For a long time I was about the only person I knew who had not witnessed a grand mal seizure.

Pullet
05-13-2005, 05:05 PM
I can add my two bits about what a grand mal seizure looks like -- in cats and dogs.

The animals I've seen do this weren't exactly feeling well at the time, so they were laying down already. They would go all stiff and then start twitching all over. The amount of twitching differed by animal. They would be completely unresponsive to anything outside themselves. They can bite without realizing it and not let go. Seizures damned scary.

Petit mal seizures are harder to identify. I've heard it described (in animals again) as a small, repetitive motion that the animal does while seeming barely aware of their environment. You know how a drowsy person will nod their head if they are falling asleep sitting up? Like that, but it's hard to wake them. Something.

When I was at the ER once in a human hospital, the man in the next room started having a grand mal. One of the nurses started shouting at him in soothing words. She had to shout because he was wailing. It was awful to listen to. I'm curious now if the nurse was shouting for his benefit or for the benefit of everyone else.

percypercy
05-13-2005, 05:28 PM
Gaius.Cornelius gave you a good overview so I'll just tell you what I've experienced. I've had seizures since I was sixteen. Most of them have been Grand Mal.
Some people describe having an aura just prior to a seizure beginning. Aura is a term used to describe symptoms that generally precede a seizure. This may be bright lights, a strange odor, distortions in visions. I've never noticed anything like this, although I am generally more lethargic just prior to a seizure.

A seizure, for me, begins with one of my limbs, usually my left leg twitching. The rest of my body follows quickly. Whether I lose consciousness or not seems to be a random factor. I end up with a massive headache and a desire to sleep until the next day.

In my case, though my neurologist refused to confirm it, I believe my seizures are caused by scar tissue left from surgery I had to correct my hydrocephalus.

Gaius.Cornelius
05-13-2005, 05:52 PM
A couple of small things to add regarding my personal experience. After a seizure I would mainly feel very tired and just want to go home and sleep after which I would feel fine. I have only very hazy memories of what happened immediatley before a seizure, evidently I often did have a premonition, but the aura was nothing specific, just a sort of sixth sense.

One time I hit my head hard and had amnesia. That got me a night in hospital. Very strange experience - not being able to remember your own name! After a good nights sleep I was fine.

Epilepsy is more common than you may imagine. I would think that almost everybody knows somebody who does or has suffered with epilepsy although they may not know who. At the time when I was having seizures, I worked for a small company with about 40 employees: one I already knew had epilepsy but was 100% controlled but I was rather suprised when another collegue told me that she too had had seizures but she asked me to keep this strictly confidential. Even in these more enlightened times, epilepsy is still stigmatised.

ZombiesAteMyBrain
05-14-2005, 10:09 PM
I have both types of epileptic seizures ever since I was hit by a car and went head first through the windscreen when I was 13. I don't know what a grand mal seizure looks like, but mine start with suddenly feeling overheated, and then zap, it happens. I sleep for a couple of hours afterwards, but have a migraine-like hangover for a couple of days. Petit mal seizures are sort of like zoning out of a conversation - I look as if I'm conscious but I'm not hearing what's going on.......zombies ate my brain, perhaps??? ;-)

As Gaius said, there is still a stigma with this illness - when I first had a fit, my father told me that I was a disgrace to the family and was possessed by devils [as in the bible]. It took years before I had the courage to admit to this illness to anybody at all - and even today people sometimes shock me with their reactions when I tell them - some people react as if it was a mental illness.

inkleberry
05-15-2005, 12:07 AM
I'd get a couple of books from your local shop and read up. Or even go on line and google epilepsy.

I have temporal lobe epilepsy myself. I also had 8 exciting months of gran mal seizures after being given Paxil and later, Effexor. SSRIs and the Inkleberry do not mix.

I don't remember my gran mals- I can only remember before and after some of them. I had the most in my sleep. They leave you very sore and disoriented, and after a sezuire I would always burst into tears, even though I wasn't feeling sad or anything.

The temporal lobes are just *weird*. I smell things before they start. Sometimes that's the extent of it. But often I have sensory disturbances- such as my head feeling too big for my body, or ants crawling beneath my skin, or a sense of floating, or the world looking like I am under water. Sometimes I can act really weird too, cry for no reason, get angry for no reason, that sort of thing. Sometimes I have trouble speaking during them- rather, I know what I want to say, but the wrong words come out of my mouth.

Certain things trigger seizures for different people. These triggers can be things like stress, sleep dep, drugs, menstrual cycles, strobe lights, illness, etc. Mine are strobe lights, sleep dep (very sensitive to this), and certain sound frequencies like bass, or in one odd case, an air conditioner that was on the fritz.

Diagnosis involves many things including MRIs, EEGs (sometimes with bonus nasal lead!), neurological evaluations, and other fun things. YMMV.

Many people take meds to control their seizures. I do not. The meds I was given only made life much worse for me. I spent 18 months on the Ketogenic diet, which, while exceptionally nasty, did help. Think Atkins, but much more vile, and a lot of heavy whipping cream. Oh, and a computer tells you what to eat. But worth it, at least for me. Otherwise, I can keep everything in check with a balanced diet, regular sleep, avoiding triggers, etc.

I can and do drive, although I almost lost my license when I had the gran mals. I haven't had one in 10 years and they were medication induced, which is a bit different. The complication with me is that I also have MS and RSI nerve problems, and so sometimes it's hard to tell what is causing what. Did I just jerk from something Jacksonian, or something MS-related? Is that tremor from the RSI, MS, or something else?

It's good times. Between everything, I keep the porcelin manufacturers in good business. ;)

inkleberry
05-15-2005, 12:12 AM
Don't rely on Holywood for information about anything. I find that "flashing lights" crap particularly anoying. A reaction to flashing lights is very rare and warnings before movies etc may be well intentioned but actually just misinform and stereotype.

You lucky bum. :p I have to be very scrupulous about the clubs and events I attend, lest I scream and begin doing things which are not exactly dance moves.

However, the infamous "Pokemon" scene just gave me a headache and annoyed me.

Strobes have to be at a specific frequency to set people off (of the people who are reactive, obviously). This magic frequency is variable. A bad flourescent tube can ruin my entire day. YMMV.

BobT
05-15-2005, 01:29 PM
I'm down to just getting an occasional seizure when I'm already asleep. I never saw a seizure until I was at work. I thought to myself, "Wow, no wonder people freak out."

I date a woman who has epilepsy. When we first met, her hands shook a lot. I didn't ask why, but she volunteered that her epilepsy medication caused it (Depakote). Then I told her about my drug (Phenobarbital, I'm an old school guy).

We have other things in common, but that was pretty weird. We both have a lot of respect for getting some sleep.

Khampelf
05-15-2005, 03:44 PM
I had my first grand mal at age 26, sitting in a restaurant with my fiancee. Came to with everyone hovering around me, wondering whether to call an ambulance. It wasn't until I was 31 and about to have a brain tumor removed that anyone said "you have epilepsy" to me. That was 6 years ago, and I've had seizures since the surgery, and I'm still on meds. I'm currently using a combination of Zonegran and Phenobarbitol. Seems to work. I've been seizure free two years.

I definately experience the Aura spoken of. For me it's a feeling of extreme Deja Vu, or like a complete alienation of Biography, everything stops while I have to puzzle out why I am the person in the place I am, and how I came to be there, and why. Like I'm suddenly recovering from amnesia, and just have to 'locate the records' so to speak.

One big pain is giving up driving priviledges for 90 days after a seizure. (AZ law YMMV)

I'm pretty lucky, I've found a combination that works well, so I function, work, and don't let the condition get in my way, much.

KRC
05-15-2005, 04:17 PM
Here is a site on Temporal lobe epilepsy, with a quote by Dostoevesky.

http://www.epilepsy.com/epilepsy/epilepsy_temporallobe.html

Johnny Rotten claims to have epilepsy caused by an episode of meningitis when he was a kid. He says his seizures are set off by certain types of lights.

"Sometimes certain kinds of lighting can make me forget where I am and trigger a memory seizure. I always keep my lyric book on stage on the floor if the lighting does weird things in the middle of the song."

I was working at a parking ticket office when a man had a seizure there. Basically he roared like a werewolf while waving his arms about--and no, he wasn't staging a temper fit because he was mad about a ticket.. His daughter grabbed one arm and begged someone to grab the other, all the while yelling "Don't bite me, Daddy!" A co-worker called the cops. By the time they arrived the man was in a daze but the cops got very nasty with a couple bystanders who wouldn't get out of their way. The man was taken to the hospital (he probably didn't need to be, as the seizure was over) and another one of my co-workers was so shaken by the incident she quit the job.

stargazer
05-15-2005, 09:37 PM
Thanks very much, everyone. The wikipedia link was very helpful to get a big picture definition, but I like the first-hand accounts as well -- they put a face on the disease. It is interesting to see the different experiences you all have had, and to see some of the similarities (fatigue and migraine after a grand mal seizure -- just what you need after that, a killer headache!).

I'm sorry to hear that there is still such a stigma attached, especially when it sounds like much of the scary part (the grand mal seizures) can be largely controlled with medicine. Zombies -- I can't believe your father would say that! I can't believe anyone would say that, these days. Wow.

Does the medicine have major side effects? I mean, aside from the suckiness of the epilepsy, are the drugs a pain?

I appreciate all your responses! Even if I don't get this job, I've learned a lot. Thank you.

BobT
05-15-2005, 09:47 PM
The drugs can have side effects. Depends upon the drug. Most will make you sleepy. My friend's makes her hands shake. They also caused her to lose some hair. Others can upset your stomach. I'm sure there are others.

Calliope
05-15-2005, 11:50 PM
My daughter has what I believe are called partial seizures, probably originating in the temporal lobe. She will get a sudden feeling of nausea, then she will get a giant shiver through her body and then her leg will start to twitch and will twitch non-stop for quite a long time. She is perfectly conscious, aware of what is happeneing, and she can have a conversation, but she cannot stop her leg from twitching and kicking until it is over.

Khampelf
05-16-2005, 11:18 AM
Does the medicine have major side effects? I mean, aside from the suckiness of the epilepsy, are the drugs a pain?




Being dependent on a medication is a pain, period. I'm naturally absentminded, so every weekend day, I'm wondering if I remembered to take the zonegran or not. (Weekdays, I take it when I shave). I've been having some temper issues that I've blamed on the medication, but I'm not really sure it's to blame. Makes a damn fine scapegoat, though. I'll have a chance to talk it over with a neurologist soon. The Zonegran is the first one that didn't have the 'zombification' effect for me. I'd hate to give it up, just cuz I occasionally kill and eat someone at work.


I had depression issues when I was using Phenobarbitol alone.

Dilantin is a chemical lobotoby, turns the Beverly Hillbillies into a fascinating southern Drama.

Tegretol gave me skin rashes.

Finding the right meds is quite a process, and never perfect.

ZombiesAteMyBrain
05-16-2005, 11:32 AM
Zombies -- I can't believe your father would say that! I can't believe anyone would say that, these days. Wow.

Well, it wasn't exactly 'these days' - it was 42 years ago when the car hit me. It left me with a mega-inferiority complex though which I still have problems with. But I've come across lots of other discrimination even in recent years - I think epilepsy is just one of those illnesses that frighten people who don't understand what it is and how to cope with it. But I'll spare you the horror stories.

Does the medicine have major side effects? I mean, aside from the suckiness of the epilepsy, are the drugs a pain?

Well the first side effect that really bothered me was when I got pregnant, even though I was on the 'pill'. The doctor insisted I musn't have taken them right - then when my baby was about a year old I read a report in a newspaper that those drugs for epilepsy counteracted the 'pill'. I thought 'NOW they tell me!!' The doctor did apologise though.

I also had really bad side effects with anti-depressants due to the epilepsy drugs - one of which left me with liver damage - so I absolutely refuse to take antidepressants.
On the other hand, my epilepsy is pretty well under control now - with a year or more between episodes.

percypercy
05-16-2005, 11:52 AM
I'm on Dilantin and Topamax right now. When I first started the Topamax, I had this fascinating condition where my hands and feet and cheeks tingled. It was distracting, but it's mostly gone away now. I often feel sedated, but that's normal for epilepsy meds.

I haven't really suffered much discrimation from my condition, but I come from a family of doctors. We find medical conditions fascinating, not frightening.

One of the favorite family stories comes from my last neurologist. I went into the hospital for a weeklong EEG seizure study which, by the way, is the most boring way to spend a week I've found yet. So anyway, Dr. Biton comes in the room the morning I'm finally going to be discharged. He apparently finds it amazing that I can function in normal society with the EEG my brain produces. Or, as I translated for my mother, he thinks I have the EEG of an imbecile.
-Lil

singersargent
05-16-2005, 11:59 AM
My sister had her first grand-mal seizure in her sleep when she was 32. She was taken to the emergency room & referred to a neurologist. One thing that surprised me was that her driver's license was taken away for six months after it, since she did not go on medication & waited to see if her brain waves became normal again. They didn't, so she started taking Lamictal & was given her driver's license back. But in the meantime, she had no way of getting anywhere, as her husband was at work all day & they had just moved to a new town. I couldn't find any driving services for people with epilepsy or others unable to drive, other than taxis & mass transit in the center of town.

No one has any idea what caused her seizures to start. She just had a baby & was on Lamictal throughout her pregnancy on the advice of her doctor.

stargazer
05-16-2005, 01:42 PM
singersargent, I loooove your username. He's my favorite artist. :)

inkleberry and Zombies (and others to whom this applies), how did pregnancy affect your epilepsy? And how are you dealing with (or did you deal with) having an infant, what with the sleep interruptions and all? Did you have to change your medicine during pregnancy and/or breastfeeding, if you breastfed?

Also: if I'm around when someone has a seizure, what should I do? I know that the whole putting something in the mouth so they don't swallow their tongue thing is actually dangerous, but is there something a bystander could do to help? I'm thinking make sure the person seizing isn't going to hit their head on anything, etc. And if the seizure lasts more than about 5 minutes, to call 911. Is there anything else?

BobT
05-16-2005, 01:59 PM
If you see someone having a seizure, make sure there's nothing for them to hit their head on. Then just let it go.

The only time you are supposed to put your hands on someone having a seizure is if they are in water, like a pool or lake. Then you want to hold on to them so they won't drown.

Don't steal the person's wallet when they are unconscious. While the seizure will stop, the person will still be out of it for a while.

Then you jump up and yell, "UNCLEAN! UNCLEAN! DEMONS, I CAST THEE OUT!".
So far, no one has yelled that at me.

singersargent
05-16-2005, 02:21 PM
inkleberry and Zombies (and others to whom this applies), how did pregnancy affect your epilepsy? And how are you dealing with (or did you deal with) having an infant, what with the sleep interruptions and all? Did you have to change your medicine during pregnancy and/or breastfeeding, if you breastfed?

My sister was told she couldn't breastfeed because of her medication, so this baby is being bottle-fed.

And I like your username, too.

My_Dog_Klaus
05-16-2005, 03:35 PM
When I was 15 I rolled out of bed in the middle of the night, hit my head and had a seizure. Luckily, my cousin was in the room. I was taken to the hospital in the morning and after a ton of tests they said I had a seizure disorder. They put me on Dilantin. They said I would have to take it for at least 2 years, possibly for life.

I only ever had seizures if I didnít take my full dose of meds for 2 or 3 days in a row. I donít have any memory of the actual seizures, but Iíll never forget the mornings after. It was like the pain you get from working out too hard Ė times 10, and in every muscle in my body. I could barely lift my head.

When I was 32, I went to my doctor and told him that I hadnít had a seizure in 6 or 7 years, could I possibly be done with Dilantin? He said to stop taking it and see what happens. Nothing did. I had a headache for a couple days but that was it.

According to my wife, whom I met when I was 28, my personality is much different without the Dilantin.

ZombiesAteMyBrain
05-16-2005, 08:41 PM
inkleberry and Zombies (and others to whom this applies), how did pregnancy affect your epilepsy? And how are you dealing with (or did you deal with) having an infant, what with the sleep interruptions and all? Did you have to change your medicine during pregnancy and/or breastfeeding, if you breastfed?


Pregnancy didn't affect my epilepsy at all - though I was warned not to try breastfeeding because of the levels of drugs in my system. The biggest pain was self-righteous people telling me that I was irresponsible to have a baby - they seemed to think that she'd be mentally handicapped, somehow.
I had talked about this BS with my doctor, who said that, since my epilepsy was caused by severe head trauma, my daughter was no more likely to have epilepsy than the rest of the population, but, partly due to this sort of bigotry, my first marriage only lasted another 8 months after the baby was born. She was perfectly OK, by the way.

ZombiesAteMyBrain
05-16-2005, 08:46 PM
Don't steal the person's wallet when they are unconscious. While the seizure will stop, the person will still be out of it for a while.

This has actually happened to me a couple of times. I have also been sexually assaulted when I was unconscious. Peopl who take advantage like this are the dregs of humanity, IMO.

BobT
05-16-2005, 10:12 PM
This has actually happened to me a couple of times. I have also been sexually assaulted when I was unconscious. Peopl who take advantage like this are the dregs of humanity, IMO.
That is pretty low and I'm sorry I was making a joke about something that actually happened to you. I am stunned that human beings can be that awful.

JillGat
05-16-2005, 11:15 PM
My son had febrile seizures (grand mal seizures whenever he had a fever from an illness) from age 9 months - 5 years old, which he seemed to outgrow. Until last year at age 13 when he had a seizure in his sleep (and no accompanying fever). I have heard that sometimes there is onset of a seizure disorder at adolescence. I do wonder if he's had other seizures at night that we don't know about. Is it common for some people with epilepsy to mostly have seizures at night while they're asleep?

JillGat
05-16-2005, 11:16 PM
My son had febrile seizures (grand mal seizures whenever he had a fever from an illness) from age 9 months - 5 years old, which he seemed to outgrow. Until last year at age 13 when he had a seizure in his sleep (and no accompanying fever). I have heard that sometimes there is onset of a seizure disorder at adolescence. I do wonder if he's had other seizures at night that we don't know about. Is it common for some people with epilepsy to mostly have seizures at night while they're asleep?

BobT
05-16-2005, 11:49 PM
My seizures only happen at night now. Not too frequently. If the child wakes up with unexplained bites on the tongue that would be a tipoff.

JillGat
05-16-2005, 11:53 PM
My seizures only happen at night now. Not too frequently. If the child wakes up with unexplained bites on the tongue that would be a tipoff.

I worry about him suffocating with his face in his pillow after a seizure, because he really passes out. I also worry a little about him sleeping on the top bunk when he's at camp.

BobT
05-17-2005, 12:31 AM
There are safety pillows you can buy if you're worried. I'm not sure what the deal with them is.

My nocturnal seizures are pretty mild I think. I've never really hurt myself except for a tongue bite. I think I hit my head getting out of bed when I was somewhat out of it. I usually wake up feeling very sick to my stomach. That goes away in an hour or two and then I'm more or less back to normal. Mine tend to be connected to poor sleep habits.

My latest bump in medication has stopped them so far.

percypercy
05-17-2005, 05:20 PM
I'm definitely more likely to have a seizure if I haven't slept properly. Strobe lights don't seem to trigger them, though they drive me nuts. I did use that as an excuse to skip the trip to the disco in Florence when I went to Europe with my class in high school so I have found at least a few benefits to having epilepsy.
-Lil