Okay, so back in February, after blacking out on the bus, (the third time I had passed out in a few months), I was diagnosed with epilepsy. Looking back, I had realized that I was having small focal seizures for two years.
Since then, I’ll have a few every couple of weeks, (usually in one day, during a very stressful period or what have you), but no more big ones.
Anyways, I just wondered what other Dopers have experienced with this disorder, just for discussions’ sake.
Strictly for discussion’s sake:
– AFAIK, I’ve only ever had grand mal seizures. The cynic in me says, if you’re going to have a malfunctioning brain, might as well go whole hog.
– Dilantin worked for me as soon as I settled into a regular course of it. It is the default medication for seizures; I’m glad I didn’t have to switch from this to that. It has no unpleasant side effects, at least for me. I take 200mg a day.
– They don’t seem to know what caused this to spring up abruptly when I was 29.
– I lost varying amounts of memory before and after each seizure. Once I lost a whole day.
– And once I didn’t come out of it for almost 24 hours. Mr. Rilch finally put Piglet next to me, and I squeezed him and curled up. (Piglet, I mean.)
– Another time, I had what I’m pretty sure was an aura. Felt like the most glorious high combined with the most earth-shattering orgasm. As I said to a friend in San Fran afterwards, “If I could find a way to synthesize that, I would own the Haight.”
– Do not try to “hold their tongue down” when someone is having a seizure. A co-worker came very close to losing a finger. Turn their head to the side, but do not otherwise get near their mouth. Just trust me on this.
– Did they do a CAT scan and all that other stuff?
– One thing that almost drove me to distraction. The morning after the worst seizure, I was trying to reach the Neurology department at the hospital where I’d had my EEG, so I could demand to know why they hadn’t told me it was abnormal weeks earlier. Except, my tongue was shredded. (So imagine what a finger would look like, eh? And speak not of pencils. Shudder.) I don’t know how many times I slurred, “No, EEG! Electroencephalagraph! No, I DON’T want cardiology!” Finally gave up and had Mr. Rilch call when he got home. And they said “But it wasn’t abnormal.” (True, and still is.) Still, no matter how bad your speech, “electroencephalagraph” does not sound like “electrocardiogram.”
I had a horrible scare recently, not for myself, but for my baby boy.
He’s 18 months, and had, according to my mom and my brother, what looked like a seizure.
He’s always done this thing where he shakes when really excited about something - like seeing a train. However, this time he shook for longer - 30 seconds - and appeared to collapse. Afterwards, he played happily as if nothing had happened.
We took him at once to his pediatrician (a very experienced doctor) who said it probably was not epilepsy, and hopefully nothing at all; but we could do a screening EEG to be sure. That is still pending.
Malthus,
Was he running a fever?
My son was prone to febrile seizures as a small kid - something like 3-5% of babies have them (more if you are Asian). They are brought on by fever and are very frightening to watch but “nothing to worry about.” However, if they have more than one with a fever, call your peditrician. And talk to your peditrician about fever management. Most kids will only have one, the kids who have repeated seizures usually outgrow them by five or six. Repeated seizures have a slight statistical link to a future epilepsy diagnosis.
My daughter just turned 6 and has been having Absence Siezures for about 6 months now. She sort of gaps out for about 5-10 seconds and then snaps out of it and continues what she was doing. They don’t seem to bother her too much, although occasionally it takes her a couple of moments and a couple of hugs to get back to normal. We started noticing when they were 1-2 a day. Now that they are 10-20 per day, they are more noticeable.
It seems to affect others around her, who are concerned about her, than it affects her. We’ll see how it affects her when we start bike riding again…
We have had an EEG to confirm the diagnosis, but have to wait until August for the appointment at the Epilepsy clinic at the hospital.
No fever, he was perfectly well before & after.
According to the doctor, most actual seizures of the epileptic type leave the child sleepy after. This was not the case in this instance - he was up & about happily playing right afterwards.
It thus doesn’t resemble either absence seizures or “grand mal” type seizures. Don’t know what it is, and hopefully it isn’t anything to worry about - which is of course why we’ve been worried sick.
One of my ex-gfs had epilepsy. She had grand mal seizures but was able to control them most of the time with a combination of medication and meditation. She was more prone to siezures when she was tired. She did have some severe personality disorders, however. Part of it was the control freak nature some epiletics get, and other parts of it was that she was just nucking futs.
I had an MRI and an EEG. (I don’t remember much of the former, since I was still so groggy and out of it).
I lost quite a few hours. The first time, my mother told me she found me passed out at the computer, and had to pour water on my face to get me to wake up-and the next morning, I had no memory. I was eating breakfast and she told me about it.
Second time, it happened when I had a fever, and all I remember was my mother shoving me into the bathroom so I could take a shower and then puking my guts up.
The last time, though, I was on the bus to work. The last thing I remember was waiting at the bus stop, then the next thing, I woke up in the hospital. Apparently, I was able to call my father, and I told the paramedics I was allergic to penicillan. I have no memory of this whatsoever. None. Oh, and I too bit the HELL out of my tongue. In fact, I still have a scar there.
(Where DID the old yarn about swallowing your tongue come from?)
The focal seizures are pretty scary. It’s like, my brain just all of a sudden goes into this “search” mode, and my thoughts become scrambled. There are weird smells, sort of a feeling of deja vu, and it feels like my brain was put in a blender. And I usually have them in fours-not all at once, just four that day. And afterwards, I feel really panicky. Then I’ll feel like one’s coming on-and it doesn’t.
And even knowing what they are-they’re still damned scary.
I’m currently on Lamictal.
My grandfather has epilepsy, but has never been able to except it. For years, he’s been harping about MRIs and tumors and now he wants to have that operation where they remove part of your brain or whatever.
Heh…The one I had at work, I went from replacing a file in the cabinet to sitting on my couch at home looking like this :eek: while my co-worker asked if I wanted anything to drink. I must have been responsive in the hospital or they wouldn’t have released me. I must have been able to give directions, or my co-worker would probably not have been able to find my building. I too have no memory of this.
Sometimes, when the epileptic goes completely limp after a seizure, the tongue can fall back and block the airway. You do want to avoid that, which is why you turn the head to the side. But you’re not going to be able to “hold the tongue down” once the epileptic starts going Pentecostal. Still, a lot of people like to feel useful in a situation like that.
I’m reading this thread with interest, and suddenly realize that I have no idea how to react in the presence of someone having a grand mal seizure.
To show how far behind the times I am, “grand mal” is a term no longer used.
I think the term now is 'tonic-clonic",and everything I was taught when I was younger seems to be incorrect.
Articles recently read seem to indicate that no action should be taken unless the seizure lasts for more than 5 minutes. No action?
I don’t think so.
4:45, OK. 5:00, 911 emergency. That’s what it says.
I hope this doesn’t constitute a hi-jack, I know you were asking about actual experiences, but since we are on the subject, would those who are familiar with this tell me what I should do?
My wife (girlfriend at the time) would look at me strangely during her seizures, as if she was trying to figure out who I was.
One time, she reached over to turn the air conditioner off in the car, and her hand didn’t quite make it. She sat there for several moments looking confused at the air vent while traffic whizzed by us and our car went where it pleased (she was driving).
Later, she told me that she had an odd sensation of surrealism at the time, like her brain was denying that air was coming from the vent, and her body was rebelling at the notion because it could FEEL the air.
She snapped out of it in the middle of my frantic yelling to pull the car over and stop in the emergency lane, and we sat there and cried on the freeway until she got her composure back and we could change seats. It was probably the most scared I’ve been in my life, watching her completely ignoring the operation of the vehicle like a child in front of a TV with local news.
I’m not allowed to drive for six months from February as a result of seizures. I’m surprised your wife was, Mosier.
I’m probably not going to drive after that, either. Hell, with gas prices being what they are, I’m better off taking the bus, anyways.
Zambini57, I’m aware that the terms grand/petit mal are no longer used, but I do use them informally, for people who might not recognize the term “simple or complex partial”. 
My cousin’s been diagnosed with epilepsy, and one of the most frightening things in my life was being there with him when he had a major seizure. We were playing on the computer, me standing behind him. He’d turned his head to look up at me and say something when he just froze. Then his eyes started tracking something behind me, as if he could see something there, and he got this look of utter horror. Then he seized. Scariest thing I’d ever seen - simply eerie.
I got him off the chair onto the floor and turned his head (banging his knee something awful in the process, but although he’s not a huge guy he still weighs more than me, was heavier than I expected, and obviously was in no position to help). And then I waited - he wasn’t wearing any constrictive clothing, so there was nothing to loosen, and nothing else for me to do but wait until he came out of it. That sucked something royally - that feeling that although you’ve done all you can, you can’t do anything else to help, no matter how much you want to.
I was diagnosed with a seizure disorder while I was living in South America. I had never had a problem prior, so it was assumed that perhaps I had gotten a parasite or something. But, no dice. They never figured out what brought them on. For a while, it seemed like my trigger was sleep deprivation. Then it was hormonal. Then when I started taking Depo Provera, they went away. Throughout, I had been on Depakote, but that made me throw up for about 2-3 hours several times a week, so I started on Lamictal. I hadn’t had a seizure for about 5 years until I gave birth. Since I was already prone to seizures, having ecclampsia after birth wasn’t much of a surprise (I had a 32 hour labor and hadn’t slept for at least 40 hours, and the typical hormonal surges associated with giving birth).
Anyway, they seem to be controlled again - I haven’t had one for at least 12 months since my son was born.
Regardless, before I get one, with the exception of the ecclampsia, I get tunnel vision, a metallic taste in my mouth and hear this song in my head repeated over and over. I can never remember what the song is, either. When I come out of it, I’m usually groggy, sometimes have a migraine, can’t remember anything including the names of people around me (after the ecclampsia, I couldn’t remember having a baby or being pregnant and thought it was 2004 when it was 2006). Things come back to me after a while, though, and longer-term things I forget, which are very minor like movies I saw but don’t remember later, come back to me when I’m reminded of them.
Anyway, it’s tough to deal with when it happens. I often feel betrayed by my own body. But, what can you do? Hopefully one day the seizures will go away for long enough I’ll be able to go off my meds. Though I tried that once and had a seizure about a month or two after, so I’m not sure if that’d work or not.
By the way, my seizures have almost always been petit mal - my muscles convulse and I bite my tongue and lose consciousness, but that’s it.
In my case, it seems like stress brings them on, as well as migraines and my time of the month.
But the other say, none of those things were present. Huh.
She wasn’t diagnosed at the time. We didn’t know anything about seizures, but that incident is what prompted us to get to the doctor and figure out what the heck was going on.
Ah, I see.
Yes, in my case, it really was a blessing I don’t drive, as I don’t even want to think of what would have happened.
(Although it’s a good thing I don’t remember the last one-I was on the bus, for crissakes! How embarassing!)
Well, my grandfather just found out. He was ranting to my dad, about how it was caused by being spanked as a child, or from pollution or his meds or whatever the fuck he came up with this time. He was adament that it wasn’t hereditary.
Dad: It’s hereditary, Dad.
Pappap: Variousa raving about how it wasn’t and blah blah blah…
Dad: Oh yes it is-your granddaughter has it.
Wow. Didn’t know there were so many dopers in the E club. I’ve been seizure free on Zonegran for about 4 years now. I still have occasional complex partial seizures. I used to describe them as ‘Deja Vu with razor blades’. Everything is perfectly normal, but not right somehow. I don’t get smells with these auras. In Arizona, I have to be seizure free 60 days before I drive again. It’s pretty much an honor system. My license has never been formally suspended. My first grand mal was in 92 or 93, I had a brain tumor removed in 96, was seizure free for a few years, until I quit smoking pot, then had to go back on anti-seizure medication. Took quite a while to find one that suited. Dilantin zombifies, Tegretol gives me a rash. For quite some time, I used Phenobarbitol and nothing else (cheap and effective when you have no health insurance).
Zambini57, It’s Okay with me if you call 911 as soon as I hit the carpet. I’m probably going to the ER for a dilantin drip, anyway.
No diagnosis or anything, and an EEG after the fact was normal, but my husband once had a seizure at Thanksgiving dinner. Luckily, I suppose, we were among his family, where his dad and dad’s GF were both psychiatrists (and therefore also doctors) and recognised it for what it was. It was really freaky… my husband just turned very very pale, said he didn’t feel well, then fell back in his chair and convulsed twice. He came to, and we moved him to the couch, and about 20 minutes later he was feeling fine. Both my FIL and his GF basically said that anyone can have an event like that, it doesn’t necessarily mean there is some chronic disorder or disease… they figured the fact that he had been VERY stressed with school exams, very tired (we had driven through the night and hit traffic/construction, resulting in an 11 hour drive to get home for thanksgiving when it should have taken 6-7), and the food and alcohol probably just screwed things up in his brain a little.
He has never had anything like that since, though I worry whenever he says he isn’t feeling well all of a sudden. That was 6 years ago, so hopefully it will remain the one and only time something like that happens! I don’t think I’ve ever been so scared as watching him in those 5-10 seconds!