My Story

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Hi. I'm 43, and had a series of grand mal seizures 8 months ago out of the blue. Epilepitic scream, threw myself on the pround, bashed my head, total loss of consciousness for about 4 hours. Had a few of these seizures, not sure how many, could have been 8 or 10. No regaining of consciouness between. I was alone and it progressed into status epilepticus. When the EMT got me to the hospital I had multiple head contussions and had nearly bitten my tongue off. They induced a coma to get me out. While I was out I had an EEG, lumbar, MRI, x-rays, bloodwork, all that stuff. No cancer, meningitis, no tumors, no AIDS, no anything. They shove a breathing tuibe down my throat, catheterize my johnson and I deal with my mangled tongue. The catheter tube got flung out into the hallway. I was swallowing vaseline for 6 days from the breathing tube it was disgusting. The tongue hurt like shheeeeit and I was lisping (who put an "S" in that word?). Drama, drama, drama. So I get out after two days, check myself directly out of the ICU, the hell with hthis I'm going home. They have me on Dilantin, won't let me drive, feeling goopy. Dropping words (couldn't remember the words "epilepsy" or "seizure", isn't that weird?) lousy short term memory, sleepy a lot. Doc says that is due to Dilantin. After 30 days he gives me limited driving and starts weaning me to Lamictal. They should put Lamictal in the water supply, it solved my 20 year back problem and acted as an anti-anxiety med. My doc says these are both side effects of Lamictal. So what caused it? I was under tremendous work stress at the time, was abusing alcohol, was being auditted by the IRS, and coming off prescription Vicodin AND xanax. Also ignoring diet, frequently not eating. The trifecta of seizure causes. So fast forward to today. I'm on Lamictal, 200 mg day, 200 night. I had a 24 hour ambulatory EEG and the doc sees a one second "flicker" in my upper left lobe. What does that mean? He shrugs, might have been there all your life, might have been from banging your head during seizures, might get worse, might stay the same, might go away. We'll do it again in a few months. So I'm allowed to drive 30 miles around hy house (everything is 31 miles away.) Now I'm noticing something (it could have been there all along, but now I'm sensitive to it). When I'm alone, if I have a negative thought or experience anxiety, I get what I think is a myoclonic jerk. Usually my left arm shivers or jerks. It almost seems to relieve the stress or pressure. It never happens when I am focused on something or with someone, just when I am alone with my brain pondering my problems. So, I read up on status epilepticus and see that I am very lucky to be alive. (and may not be so in ten years). Thought? Feedback? Questions?

Comments

Re: My Story

Submitted by caradee on Fri, 2006-11-03 - 09:15

Mike, welcome! Wow, you have been hit pretty hard with alot of information. I do hope that you have seen the worst of your seizures, but like the rest of us, you just never know, so you may want to re-think your driving priv. If you can cause multiple contussions just from falling down, can you imagine what can happen when you have a 3000 pound car wrapped around you? I'm just concerned for your saftey, and of those driving near you. May I ask? For how long have you been abusing alcohol? I used to work in a nursing home, and I have taken care of people with seizures caused by alcoholism. I don't beleive that is diagnosed enough. Probably because people aren't as honest with the docs as they should be. Really, I was just wondering, and not trying to pry. It is something to think about personally, though. Seizures caused by alcoholism are treated differently. I have probably crossed the line, havn't I? My seizures are 'most likely' caused by deformed neurons, but no one can say for sure until I'm dead and they take a closer look. I have been on seven different AEDs, currently Lamictol and Lyrica, but nothing has even slowed them down. The older I get, the more I have. I started with tonic clonic every month or so, and now the occur every day, anywhere from 2 to 10 times. I AM SO TIRED OF BEING TIRED! Anyway, welcome. I hope to here from you again. Cara

Re: Re: My Story

Submitted by mikec2 on Fri, 2006-11-03 - 11:57

Thanks for your reply. Please be honest. Hell, my names not Mike so what do I care! I'm Irish so alcohol abuse started about 1100 years ago. My alcohol abuse was wine, at night at home, a bottle or so some nights. The night before I had the seizure I had pounded too many for sure, but the doctor didn't think withdrawal caused the SE because it was only like 12 hours, but the hangover may have been a factor in triggering it. Also, I had been on a cocktail of anti-anxiety, anti-depressants AND pain meds (my primary doc is *way* too quick with the script pad I see now), got tired of them, and perhaps had suddenly stopped them too quick, especially Xanax and Vicodin. This flicker think in my left frontal lobe really has me freaking, although I have also heard from people with seizures that it is better to at least have something to point to. What I'm trying to figure out is this flicker thingie. Was I born with it? Was it caused by substance abuse? Was it caused by the head bops during the SE? did it trigger the SE separate from the other factors? Did the other factors trigger the SE separate from the flicker? Why does it burn when I pee? The last was a joke. My neuro is very nice and pleasant but is extremely comfortable looking me in the eye and saying "We don't know" to all these questions. He doesn't seem to worry much about the flicker, it was like .5 seconds in a 24 hour period. He wants to do another 24 hour ambulatory eventually. His attitude is mild amusement at my concerns and then saying "it doesn't really matter what caused it. We just don't want it to happen again." He said if there are 8 triggers for a seizure I was doing 6 of them. If I never do 4 again I'll never have a problem (rough analogy) Re: driving. They waited 30 days and put me to ten miles, then a few months to 20 miles, now to 30 miles. He said don't drive tired, or obviously after any drinking etc. I'm off all those and the scripts now (except Lamictal). PS: doc says drinking is okay, which I thought was weird. I have a social drink on the weekends, but never more than two. I love good wines :-) If the myoclonic jerks happened continually I'd be more concerned about driving of course, but they seem to only be in the evenings when I'm alone and my mind gets anxious. If I'm doing anything at all physical or concentrating on anything (like driving) I have no signs of them at all. Really, the thing that bothers me now is the dropping of words and the short term memory. the dropping of words is troubling because it is like once I can't remember a word I can't ever remember it. It is like I can't mentally file it. My neuro laughed and said welcome to middle age, and he also said it was a side effect of Dilantin. But I've been off that for 2 months -- thank god, it made me feel like Eeyore. I'm concerned the word dropping is damage from the SE or this flicker thing (there must be a name for that). I watch House (does everyone here? :-) ) and I guess my symptoms are extremely minor compared to all their neuro patients, but its troublesome in my line of work (writer and consultant).