Sudep

[msuder0583]

Does the thought of SUDEP ever worry anyone? Because of course our seizures are spontaneous, so we really can't plan them, plus most can't be stopped. And if SUDEP were to occur, we would never know.....

 

[epileric]

It has never bothered me, probably because I've lived with my epilepsy all my life.

Roughly 1 in 100 sufferers of severe epilepsy die of SUDEP every year[3]. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year.

When you consider that people with epilepsy only constitute 1% of the population that makes the amount of people appear exponentially smaller. That alone takes away the scare for me.

 

[Endless]

I think about SUDEP once in awhile, but I don't worry.

Some recent research says that a proportion of people who die of SUDEP, the cause could be a heart abnormality/heart arrhythmia that causes a problem during or after a seizure.

http://www.cureepilepsy.org/news/research/sudep.asp

To make me feel like I had some control over the situation, I had my heart checked out up, down, and sideways. It's fine. Better than fine. I don't know how much of a difference that makes but it makes me feel better.

There are a lot of different reasons for death. Most aren't exclusive to epilepsy. Other people die from them, too, not just us. Here's a quote from another post that I made:
http://www.coping-with-epilepsy.com/forums/f20/new-member-question-i-can-never-get-answer-9864/

I'll skip the usual "welcome to CWE" and "You'll love the people here" and get right down to brass tacks.

In your lifetime, you have a .0001 chance of dyeing from Sudden Unexplained Death in Epilepsy. But the vast majority of these had sub-clinical levels of their anti-seizure meds in their bodies (In other words, you can control this)*
You have a ,00000003 chance of dying from a car crash while you are having a seizure**
You have a .004 chance of dying as a car occupant***
You have a .000077 chance of dying from a fire ***
You have a .30 chance of dying from an accidental fall or other injury ***

I don't know about you, but I'm concentrating on taking the proper dose of meds on time, getting my blood levels checked when my doctor tells me to, and watching where I put my feet, how I step into the bathtub, or how I stand on the ladder. Much more important to staying alive than worrying about dying from epilepsy-related causes.

*Sudden Unexplained Death in Epilepsy is around 1 in 1000 for people with epilepsy, but the majority had a subclinical level of their meds in their bloodstream. http://www.epilepsyontario.org/clien...atients+(Sudden Unexplained Death in Epilepsy)

**44,000 fatalities from car crashes in the US per year, .2% listed seizure as a contribuing cause, 307.006,000 US population. http://www.neurology.org/cgi/content/full/63/6/E12

***http://danger.mongabay.com/injury_death.htm

 

[msuder0583]

well those numbers are definitely reassuring, however when you're a "glass is half empty" type of person, you see yourself in that percentage. of course the seizure meds don't necessarily help with your self esteem. i don't let epilepsy control my life what-so-ever and i don't broadcast it to anyone except on here, or to people who know me, but it seems those who aren't knowledgeable don't seem to understand that it is quite possible to die from E if not properly treated or maintained. cardiac arrested, heart attack, sudep, falling off the empire state building =p, car accident, etc. in fact just recently a little 11 year old girl died from having a seizure in the bathtub. very tragic. and it makes it very difficult to live by yourself.

 

[kostareyna]

It's not that im suicidal but I actually don't really care.

My epilepsy is really mild compared to some stories i read,i only have myoclonic jerks,curenntly don't have anything while on keppra.But sometimes i think that being treated as disabled or feeling like one because doctors think you can't do stuff even when it comes to sports its kindda sucks and annoying.

So i think that if i would die from a seizure where i would probebly won't feel a thing it won't bother me and i finnaly will be relived.

Again im not suicidel and don't think about killing my self but if it will happen by itself than so be it.

 

[mel239]

I did the whole heart moniter thing for 2 months calling in every few days and had tests in hospital in 2008 when I had the TIA at work which led to getting help for this whole seizure thing so i feel pretty confident.But being a single mother of young kids,I did worry since I have nothing to offer anyone anymore so for a long time I was afraid to sleep but i got over it.It was just part of accepting all this in the beginning for me

 

[Cint]

well those numbers are definitely reassuring, however when you're a "glass is half empty" type of person, you see yourself in that percentage. of course the seizure meds don't necessarily help with your self esteem. i don't let epilepsy control my life what-so-ever and i don't broadcast it to anyone except on here, or to people who know me, but it seems those who aren't knowledgeable don't seem to understand that it is quite possible to die from E if not properly treated or maintained. cardiac arrested, heart attack, sudep, falling off the empire state building =p, car accident, etc. in fact just recently a little 11 year old girl died from having a seizure in the bathtub. very tragic. and it makes it very difficult to live by yourself.

My 1st TC seizure happened years ago when I was stepping out of the shower. When I fell, I hit the hot water and lay in the tub, seizing, long enough to endure 1st and 2nd degree burns on my back and arm. If I had not been at my parent's home that Easter morning, I would not be here today. I had been to a dr. for the beginning of SP's, but the fool said it was something else, so I wasn't on any meds at the time. I have refractory epilepsy (difficult to control) and have tried 11 meds, had a LTL and the VNS and now am divorced and live by myself, so I don't let epilepsy control me. I do know the consequences, but I could also have a stroke, heart attack, be struck by lightning, be shot, be in a fatal car accident, etc.

Here in CO, a young lady passed away in 2009 from SUDEP. And recently, another woman is on trial for killing a family of 5 while seizing while driving.

If you know your limits, then take precautions.