new member with a question that I can never get an answer for

[Paul66]

What is the average life span of a life long epileptic? If your answer is a bunch of variables I would claim that that is a cop out. Epileptics have a 28X greater risk of sudden death than of your average Joe.
The reason I ask is one that makes sense to me. If my life expectancy is short, I want to file for disability and enjoy life with charitable works and random acts of kindness, rather than hoping I live to a ripe old age. I turned 44 last month and am in good physical condition,(excluding the seizure activity), and have tried repeatedly to get into this conversation with other epileptics. With not much success. I'm not a dooms dayer, I'm into honesty and facing reality.

[Nakamova]

From a UK Study:

"Reduction in life expectancy can be up to 2 years for people with a diagnosis of idiopathic/cryptogenic epilepsy, and the reduction can be up to 10 years in people with symptomatic epilepsy. Reductions in life expectancy are highest at the time of diagnosis and diminish with time. The model provides broad estimates, but it appears that the higher mortality rates in people with newly diagnosed epilepsy translate into decreased life expectancy."

HOWEVER, it's important to note that it's very difficult to rule out other health and lifestyle factors, as well as age at time of diagnosis. This isn't a cop-out, just a matter of statistical caveats. As for me, I'm planning on enjoying life, doing charitable works and random acts of kindness, AND living to a ripe old age. I don't see them as mutually exclusive.

[Endless]

Okay, Paul.

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+(SUDEP)

**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

By the way... welcome to CWE, and I AM glad you found us!

[RobinN]

I have improved my daughters seizure activity by making nutritional changes. I think that improves the quality of her life tremendously. It also will most likely prevent other illnesses, if she follows the advice over her lifetime.

Do what you can to improve your overall health, and enjoy life.

[douglas]

I wouldn't sweat it or spend all my savings just yet. There is a much, much higher possiblity that one might die in a car crash or crossing a road than from Sudden Unexplained Death in Epilepsy or epilepsy.

Yes, obviously having a condition like that has an affect on expectancy. And so does getting wasted at football games and smoking a pack a day.

Personally, I am much less worried about death from epilepsy and more worried about not being able too look after myself at some point and becoming a burden to my wife, children and family and needing them to look after me for a very very long time.

[Bernard]

Hi Paul66, welcome to the forum.

What is the average life span of a life long epileptic? ...

I'm guessing you failed to get a satisfactory answer because there isn't one. I don't believe there is an "average life span" any more than there is an "average epilepsy".

There are some forms of epilepsy that are progressively degeneratating and a prognosis for short term life expectency is known (empirically from history). Other than those examples, I think you face the same uncertainties about your future that the rest of us live with.

Life is precious and short - even if you live to be 110 years old. Many people lose perspective on this and that's why books and movies that remind people of this are popular IMO.

[dfwtexas]

I have read that death rate for people with E is four times greater than someone the same age without E. It took account the risks of falls, car accidents, likelihood of drowning, etc as well as small chance of Sudden Unexplained Death in Epilepsy.
I don't think it is productive or healthy to focus on this...just to be aware we are higher risks. I know a lot of people on here, like myself, have other medical conditions, but we continue with our lives...including working and being productive member of society.
I know some of my friends have told me that they know people with far less medical issues that have been approved for disability and think I should consider it. Getting disability is not easy and personally I want to work.
How long have you had E...are you on medication, how is your seizure control. Have you had this discussion with your neurologist?

[douglas]

I have read that death rate for people with E is four times greater than someone the same age without E. It took account the risks of falls, car accidents, likelihood of drowning, etc as well as small chance of Sudden Unexplained Death in Epilepsy.

true. and thats exactly why we are on meds and the docs are trying to control the seizures.

[lureswinger]

Endless just what sort of computer do you own to work things like that out lol

[Endless]

Hey, Lureswinger,

it took me FOREVER. in the old days i could have done it in 20 minutes. i'd write "lol," but it isn't funny.

But oddly enough, seizures have made me better at left-brain activities, I think. If only I could think faster. Also, I cheated! All those websites I referenced had the odds worked out!

[Zoofemme]

This is the way I look at it based on statistics and my family history:

The women in my family live into their late 80's-90's...my grandmother and 2 of her sisters are still going strong and they are all in their 90's. My father's grandmother is still going and she is the same age as above. Given that and the E statistics that means I have a pretty good shot of making it to my 80's at least and that is fine by me. I'll probably be worn out enough by then that I won't care anymore, lol.

[sandi]

I feel like you do at 51, I have been robbed somewhat and now want to enjoy life.I have missed so much. There are no guarantees.
I'm told I'm healthy, but I am not treated for Epilepsy and so as I've often felt I will probably be at high risk for sudden death.
Managing it all these yrs as I have makes you get a little complacent .One day I fear I'm going to do my normal procedure and it's not gonna work.

[Paul66]

sorry for not getting back sooner, it's been a long week. I got the 28x's number from a news week article a couple years back. It was a very interesting read. I also want to apologize for the cop out comment. I have to admit I wasnt ready for much of a reply at all. Like I said, in the past I met a lot of resistance to even get a standardized answer. I disagree with some of the statistics mentioned above though. I guess because it's been such a struggle to make to 44. Working and being productive has been my greatest attribute in life. Even with epilepsy I have managed to send a kid to college and another on the way there.
Common sense tells me to stop driving. I have sleep threshold seizures and because of this am constantly fatigued.

[sandi]

Stop and Take Care of yourself. You should be very proud of yourself-
It's a struggle and it takes it's toll.

[KARDSHARQUE]

I don't know if the there's a difference with those that have Epilepsy and those that don't. However I do know that my mothers aunt who's seizures were under control lived to be in her early eighties.

[Crystal11]

Well from what I have heard is that most people with Epilepsy live as long as those without it. Sometimes the risks are higher with uncontrolled seizures or in dangerous situations but most people live just as long.
Unless there are more than one condition or other health problem, the lifespan is usually the same.
I've never been told my lifetime is shorter just for having E.

Crystal