How do you all deal with the Sudden Unexplained Death in E? I have nocturnal seizures and I've had them for years. Prior to surgery I had never heard about it and then I watched the show Dr. G (she diagnoses the cause of death) a while back and one episode was due to SUDEP and I remember saying to my husband, "Thank G-d I didn't know that when I had seizures" and now I have seizures again and I know it. Because I'm not on my meds I'm having a lot of seizures in my sleep (not status and I never went status). I'm assuming they're Complex Partials since that fits the description and thankfully I'm not having TC's this time around. If one isn't having TC's does the SUDEP still apply? I've read some info. on here and some of the suggestions, but I was under the impression from the threads that all the suggestions (ex: safety pillow) are irrelevant. I also read an article about it (off the web) that those that are high risk are those: don't take to meds, candidate for surgery, those that had surgery and it failed. Well, I fit the bill for all that and now I'm a little concerned. (Although perhaps meds would work for me this time around and I'm considering them, but then I hear about those that have passed even on meds). I know I shouldn't think about it and normally I don't, but lately it's been on my mind and I guess I just wanted to know if you would still be subject to it if you're not getting TC's. I have a feeling I know the answer to this question, but maybe I'm just hoping to hear that I'm wrong. I seize approx. 4 nights a week but for me they're mild since they're not the TC's that I used to get.
A little anxiety
- Thread starter KelVarQ
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Hmmmmmmm, well
you do seem to fit the higher risk category fairly well. Why not try to reduce that risk by changing things, suchs as your diet, to try to increase your seizure threshold? You may very well need to add meds back in, but changing your nutrition quite often helps, too.......
you do seem to fit the higher risk category fairly well. Why not try to reduce that risk by changing things, suchs as your diet, to try to increase your seizure threshold? You may very well need to add meds back in, but changing your nutrition quite often helps, too.......
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epileric
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Also you should research the statistics of SUDEP. I dont' know what they are but I'm pretty sure that they've only happened to a small percentage of epileptics which lowers the probability of you going that way.
Also remember that stress is a major trigger for seizures so the more worried you are about it the more likely you are to have a seizure. How's that for getting caught in a cycle?
Also remember that stress is a major trigger for seizures so the more worried you are about it the more likely you are to have a seizure. How's that for getting caught in a cycle?
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Kelvar,
I never went status or had nocturnal seizures until after my LTL. After the surgery, the seizures went from CP to TC any time of day or night. Plus, as stated before, stress is a HUGE factor, and in my case, the marriage was a disaster. I'm on my own now, the stress level is way down, thus so are the seizures.
And since I live by myself now, I can't let this factor that I may fall into the high risk category of SUDEP worry me. There have been times I could have been in the grave by now, due to other circumstances.
If your seizures are increasing over time, you may need to start meds again, just to be safe.
I never went status or had nocturnal seizures until after my LTL. After the surgery, the seizures went from CP to TC any time of day or night. Plus, as stated before, stress is a HUGE factor, and in my case, the marriage was a disaster. I'm on my own now, the stress level is way down, thus so are the seizures.
And since I live by myself now, I can't let this factor that I may fall into the high risk category of SUDEP worry me. There have been times I could have been in the grave by now, due to other circumstances.
If your seizures are increasing over time, you may need to start meds again, just to be safe.
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I think they are still learning about SUDEP, so the statistics are loose at this point. more info here though:
http://www.epilepsy.uhhs.com/sudep.htm
http://www.epilepsy.uhhs.com/sudep.htm
skillefer
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Hi Kel! I have tonic clonics. I have always just kinda shrugged at the SUDEP. I mean let's face it...stressing about it won't keep it away. In fact, the stressing can trigger seizures. I always guessed that SUDEP was a possibility after my 8-9 grade science teacher was found dead by her 4 year old daughter. The teacher had had diabetes. She had a reaction in her sleep and was found face down. she had smothered herself. Not a comforting thought when your 15. I had learned to deal with it as a possibility, when my neuro told my hubby about it, when we had just got married. He freaked for a little while. I'd wake up and find him watching me. I snore and am pretty sure I have sleep apnea. He'd jostle me if I quit breathing....Eventually he learned to deal with the possibility. But he's still very protective. 
moonchild1970
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Personally I try not to think about it. But I guess, if it were to happen to me, well, I guess I wouldnt feel it? Thankfully you don't feel much of anything during Grand Mals.
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Hi Kel! I have tonic clonics. I have always just kinda shrugged at the SUDEP. I mean let's face it...stressing about it won't keep it away. In fact, the stressing can trigger seizures. I always guessed that SUDEP was a possibility after my 8-9 grade science teacher was found dead by her 4 year old daughter. The teacher had had diabetes. She had a reaction in her sleep and was found face down. she had smothered herself. Not a comforting thought when your 15. I had learned to deal with it as a possibility, when my neuro told my hubby about it, when we had just got married. He freaked for a little while. I'd wake up and find him watching me. I snore and am pretty sure I have sleep apnea. He'd jostle me if I quit breathing....Eventually he learned to deal with the possibility. But he's still very protective.
Wow, see there..... that's what I'm up against. I also have diabetes, so I have to take insulin shots and check my glucose numerous times a day. Along with epilepsy and the depression that goes with it. So there are numerous possibilities of things that could happen and if I were to worry, I wouldn't be living!