Just curious.
I had a bad seizure this morning. I have generalized seizures. The falling, twitching, spasming kind. I had fallen asleep on the couch. When I awoke, I was across the room, with my head under the coffee table and my feet against the entertainment center. I had scratched myself VERY badly. Seriously, right now, I look like I lost a fight with a panther.
My seizures are related to my hormones. The epilepsy/hormone connection is only very recently being acknowledged by doctors, although women have been insisting on it for years now. I knew mine were hormone-related (which now even has a name–catamenial epilepsy) after charting them for a couple of years. I don’t have them very frequently (I average maybe one a year, but I have gone up to four years seizure-free). But after a few seizures, I noticed a pattern. They would occur 3-4 days before my period, or 1-2 days after it started. My first neurologist acknowledged that there was indeed a pattern, but at the time (this was about 13-14 years ago), no research had been done.
My current neurologist (I moved to a different city & had to get a new one) dismissed the connection out of hand, for several years. Then one day, I’d just had enough. I demanded tests to see if there was a connection. He finally relented, and said yes, there’s probably a connection.
I just got done doing some investigation at the Epilepsy Foundation of America website (www.efa.org), for a friend of mine, who is currently being tested for epilepsy. Quite by accident, I ran across some articles about catamenial epilepsy. My Goddess, I thought I’d cry. I felt so totally validated. Finally, after 18 years of dealing with this, there is good, solid information about my type of epilepsy. What I (and many, many other women) knew all along has finally been proven.
Any other Dopers dealing with epilepsy, either your own or a loved ones? Share with me, folks. 
Pers, no epilepsy here, just glad to hear you’re okay and that you found that site. That’s got to be a relief!
((Pers))
Spouse has psychomotor seizures occasionally. Rather scary to watch but I’ve gotten used to them. He’s on new medication, the name of which escapes me, and he’s doing well – seizures are not nearly as frequent or as intense.
The hardest thing is when he has one in public, having to explain to everyone what’s going on and that it isn’t anything to worry about. People tend to panic if they haven’t seen one before.
Thanks, Bunny!
caircair: I know what you mean. I’ve had seizures in public: two at work, in fact. But for all the seizures I’ve had, I’ve never actually seen one. In some types of seizures, the person is aware of what is going on, or at least aware of their surroundings, but they just can’t do anything. Mine aren’t like that. I have no warning, no aura, no nothing. I just wake up afterwards, feeling like I’ve been hit by a truck. That’s how I know I’ve had one.
People sometimes ask me what a seizure is like. Truth is, I personally do not know. As I said, I am not aware. I black out. I hate that. While epilepsy doesn’t control my life, the one thing that I really, really hate is the blackout. Losing a minute or so of my life is really upsetting. :mad:
Hey Persephone, sorry to hear you had another seizure. I’m one of the other dopers with epilepsy. I had my latest seizure in May. It was one of those ones like you describe where I just sort of blacked out. I actually just remember getting dizzy, but according to my dad’s friend who was standing next to me, I had a seizure. I’ve only had one other like that though. The others have been the full blown typical seizure that I’m fully conscious throughout. Now I’m taking Topamax instead of tegretol. It makes me much less drowsy and also doesn’t increase appetites like tegretol does.
-Lil
I do hope you are okay. I have epileptic seizures(don’t know exactly what kind), but I take Depakote to curb them. I haven’t had a seizure in a couple years. The med dosage is so low that it is usually reserved for migraine sufferers. I think that is pretty good for me. If I had a higher dosage (I have had it) then I would be so slow and groggy that there is no way that i would be able to function properly. I blame my meds for not being able to properly express myself through talking(although that is most likely not the problem). I just have trouble finding the right words. I am slow in that department for some reason. Only when I talk though. Hmmm…
I went to one neurologist and he said that he couldn’t find anything wrong with any of my brain wave patterns (before meds). So I don’t know what is happening. I now just go to my family doctor and he makes sure everything is running fine.
I don’t really have an aura to warn me. I think the only aura that I have is the fact that I feel like I am in a dream for the whole day, then BAM! I am having a seizure. Oh, and then the wonderful feeling of being so tired that you don’t want to go anywhere the rest of the day. The last one I had I was sitting at my computer, blacked out for a few seconds (I think), and bit my tongue. That was the only thing that smarted. I had a nice swollen black and blue tongue for about a week. That is the only breakthrough that I have had, thank God(and I truly mean that). And all my seizures are quite different from each other. I have had some like the above, or where I am hitting my head on something or where I am thrashing about.
I’ve said a lot but I know that there is more. I will just have to figure out what it is.
My ex had seizures, never full-on thrashing, but she would blank out and sort of twitch with varying degrees of force all over. I don’t know that auras were anything specific, but I did get pretty sensitive to when one was coming down the road. Definitely scary to watch; I would just lay down with her and hold her until they passed, and talked to her all the while in the hopes that some part of her consciousness was hearing even if she wouldn’t remember afterwards.
It’s plain ridiculous that no research had been done about connections to hormone cycles. I’m not arguing it, because I do believe it, just noting that it’s ridiculous that it hadn’t.
Percypercy: I’m currently taking a time-release form of carbamazepine (Tegretol) called Carbatrol. I took Tegretol for a long time, but got sick & tired of the crashing (not seizures, but the irritability and sleepiness) when the meds move out of your system. With regular tegretol, it only stays in your system 4-6 hours before it starts to come down. Carbatrol stays in for over 12 hours. And no appetite increase at all. I used to take Depakote, a freaking monstrous dosage. Of all the meds I’ve taken, Depakote worked the best at controlling my seizures. Unfortunately, it also increased my appetite, made me gain around 70 pounds, and killed my sex drive. After fours years of that, I’d finally had enough.
Drastic: You’re right–it was ridiculous. I was floored when my current neurologist didn’t believe that mine were related. I mean, it was just so obvious to me, and pretty much everyone else that knew me. The timing alone should have been enough. I’m going to talk to him about the progesterone therapy at my next appointment. I really don’t know much about hormone therapy at all, so I’m going to be doing some research to find out what the possible side effects are.
Apologies in advance for any mistakes; this is my first post
My sister (15 years old) started suffering from seizures this spring. I wasn’t there, but apparently it was completely terrifying. Her aura is screaming (scary in itself) and then she goes into a grand mal seizure, stops breathing, turns blue, etc. No one in my family had every had epilepsy-- so no one knew what was going on. I think they assumed it was a brain tumor. Anyway, by the time all the tests were finished, (yep, almost exactly one month later) my sister had her second seizure. Her neurologist told her that everything was normal and he suspected her seizures were related to hormonal fluxes. After reading the posts here, I’m glad the guy is so enlightened! Anyway, she’s on medication now and hasn’t had a seizure since April. It’s been hard on her, since her favorite activities are bicycling and horse-riding, neither of which she is allowed to do for a few more months.
Welcome, maryliza!
I was 16 when I was diagnosed, after a full-blown grand mal, like your sister had. Tell your sister to pay attention to when they occur. My mother was the first one that suggested hormones, after my very first one. The women in my family get migraines–that is, all the women except me. I’m the only one in my family with epilepsy. My mom was wondering (at the time) if maybe there was a migraine/epilepsy connection. The doctor said “possibly.” That particular doctor was much more open to a hormonal connection, but at the time, no real research had been done.
Your sister is lucky, in that now they actually have pegged hormones as a cause in some female epileptics. At least they can say for sure now, instead of like with me, for eighteen years having seizures that were technically “of unknown origin.”
I was on Tegretol XR so I was already only taking it only every 12 hours, but the thing that disturbed me about tegretol is that since it’s metabolized by the liver, I kept having to increase my dose. By the time I stopped I was taking 1500 mg a day. (Obviously my liver is no slouch.) Topamax has one set dose for pretty much everyone so no more blood tests every month and no more threat of seizure because of a low level. I started having my seizures when I was 16 too, but they don’t seem to be related to hormones especially. I also have hydrocephalus so I’ve had several brain surgeries. My neurosurgeon suspects that my seizures may be related to scar tissue from surgeries.
-Lil
Hiya,
I have mild epilepsy which was diagnosed when I was about 10. I have a feeling it’s related to a fall I had when I was a kid during which I whacked my head.
I was on medication for a while (epilim), which I took myself off when I was about 15. The stuff made me horribly dopey, cut my attention span to about zero… essentially made me feel like a zombie. I hate doctors in general, so I never went back to my neurologist as an adult.
My seizures consist mostly of funny blinking and split-second loss of awareness. Seizures are generally brought on by bright/glary light, tiredness and stress. Occasionally I’ll be walking along and have a momentary loss of consciousness - I’ll fall over, but be conscious again by the time I’m halfway to the ground… so fortunately no injuries. This has only happened twice. I’m told I twitch a lot during my sleep - maybe these are seizures, maybe I’m just a twitchy sleeper… who can say 
I must say I hadn’t noticed any connection between my seizures and my cycle - I’m inclined to say in my case they’re not connected, but wouldn’t be surprised at all that a connection has been made in some other women.
So anyway… there’s my 2c worth
Maxxxie