Hey, I'm just wondering if anyone out there has seizures like me. I haven't been diagnosed as Epileptic. When I had my first one back in 2002, they ran all the tests (MRI, CTscan, and the one with the electrodes they place on your head and put you in a dark room, sorry I can't remember the name of it now). They couldn't find anything unusual so they told me sometimes people just have seizures and there is no particular reason.
I have been on medication since 2002. They put me on Tegretol. I believe it is one of the weaker anti-convulsants, compared to Dylantin (I could be completely wrong here...) I have had a few seizures in these past 5 years but, not that many. Most of them have been when I am asleep at night.
I personally think my seizures are caused by stress. To be honest, they scare the he!! out of me. They are gran maul (sp) seizures, and I usually don't feel very good after. When I am seizing I always bite tongue and it is usually pretty sore for a few days, and my muscles usually hurt, and I am pretty out of it for a little while.
I was just hoping for some advice, or info, or personal experiences.
In my own opinion, there is a reason for every seizure.
Stress is just one of the many triggers for seizures. Others include recent surgery, head injuries, new or changes in medications, infections, flashing or strobe lights, computer monitors, seeing, smelling or hearing something that reminds you of something in your past (deja-vu), sleep apnea or trouble breathing, alcohol or drug abuse, and even women's monthly periods....etc etc.
You're describing my seizures almost exactly. I've only had 8 gran mal seizures since they started in Oct. 2001. In my opinion, I have 2 major triggers for my gran mal seizures. Stress and lack of oxygen. I have trouble breathing while on my back (awake or asleep). For the 1st seizure, I was sleeping face down on a pillow. The rest I woke up (after a seizure) on my back making funny noises while trying to breathe easier... I snore too. After waking up, I ached head to toe... especially upper arms, and thighs. I always bite my tongue until it bleeds. Sometimes wet the bed.
I never remember any of what happened. My short and long term memory is a little fuzzy for a while.
Seizure 2 thru 6 happened when reducing and stopping my dilantin. Not sure if it was lack of dilantin or lack of oxygen. I went back on normal amount of dilantin and they stopped. The only reason I can think of that #7 and #8 happened was stress and lack of oxygen.
I'm on a very low dose of dilantin. Theraputic level is 10-20 in a blood test. I'm at only 4.8... and it works unless I don't get enough oxygen.
Dilantin and tegretol are 2 of the older meds.
I also have sensory partial seizures (auras) while awake that never lead to Gran mal seizures. Thanks to dilantin and/or ativan, I have very few of these. I feel that the 2 types of seizures I have are not related at all.
Read some of the other threads in the epilepsy section of healthboards... you'll learn a lot.
I have been on Tegretol for just over four years now and I think it works. That is crazy how a seizure can be brought on by deja vu and sleep apnea. I get deja vu sometimes and I think I could possibly have sleep apnea. I snore a lot (I think, from what I hear), and to be honest I am about 50lbs overweight, so I wonder if sleep apnea could be a factor for me and my nocturnal seizures. I also get vertigo pretty easily if I sleep on my back and I don't have my head up high enough, I get dizzy and sometimes get sick if I end up sleeping like that. I think stress is the major part though. I carry so much of it with me. I really need to work on it, and quit just internalizing it, because it turns into a seizure. Last time I went to the doctor, which was last June I believe, he put me on tegretol one pill 3 times per day. I don't see my neurologist very often, only about once a year, for an evaluation to see how I am doing.
I also have heard a lot about the 'aura' feeling that can go along with the seizure. I believe I have those too. It was so strange. I had all of these fragmented thoughts of things I hadn't thought about or remembered in years. I thought I had forgotten them, and now that the aura is over, I have no recollection of them at all, I just remember it happened in about a 10 second period right before my seizure.
I am hoping if I just start taking my medication religiously and take better care of myself (sleep, eating, exercise, meds, no alcohol/drugs for awhile) that I can manage these things. I have to be able to drive, there is no way around it, and I hadn't had a seizure while I was awake in almost 4-5 years. I just had a nocturnal one last year though, about a year ago.... It happened after I had gotten in an argument with my step mother. I am pretty sure that set it off. She has a way of doing that with me. I might have to just cut her out of my life for good, no tears here though
The deja-vu is how you can feel during an aura... it doesn't trigger the seizures, it's just part of the aura... which can come before a regular seizure. Auras are simple partial seizures all by themselves.
Snoring is one of the signs of having sleep apnea, especially if you're overweight. Being overweight can contribute to sleep apnea, especially if you sleep on your back. Funny thing is, I was normal weight when I had my first seizure. Then, because of the medicines I was given, I started to gain weight without eating more... and it's all in my stomach area... the hardest place to lose it.