Anyone who has epilepsy knows that seizures themselves, as well as the side effects of the medications that are used to treat them, make life, some extent, miserable.

First there are the seizures.
Then there is the depression.
There is the 'pain in the butt',
of having to swallow pills.
There is the social deficeit.
For many, you cannot drive.
There is, for some, a problem with, or a lack thereof,
employment.
It diminishes your sex life.
It makes you tired, or with some drugs 'hopped up'.
It gives you 'mind goo', smudging that which you are.
It affects your memory.
For some, headaches, or other discomfort.
For women, concerns of childbirth, for others contaceptive failure.

Suppose you had a chice of taking one of 2 drugs, either a drug that would totally control your seizures, but leave you with a lesser quality of life from the epilepsy, and the worse quality of life from the side effects of that drug. Or, you could take the other drug. It would lower the duration, severity, and the number of your seizures, but not fully control your seizures, but it, drug 'B', would vastly improve the quality of your life.

Which would you pick? Which life would you choose?
I wonder. Is it really all about seizures? Or is it about life? Would it be better, perhaps, if we did not
consider epilepsy as seizures, but instead should we concerned about living? I doubt that epilepsy is the only condition, or in some cases, diseases that people may have, which diminish their quality of life (from whatever medical reason it may be). On this, I doubt that we are alone.
Perchance, is this an epilepsy board, or is it really a BBS about living?

Interesting that you wrote about these topics. I have been thinking so much about the same questions in the last few weeks:
I kind of want to just go off of meds all together and live a higher quality, happier, though perhaps more dangerous, life.
It makes sense to me. I like to live and feel things strongly; at this point life feels all numb.
The problem: Grand mal seizures burn brain cells, correct?? Since I have grand mals would I be harming myself??

[This message has been edited by cbb (edited 06-30-2003).]

The line is too fine to ballance, there for, almost a trick question. You could not have seizures and a good QOL...they CAN'T go hand and hand. No matter how many you take away and how much you diminish them you will still have them. Right there means less to your QOL!

It is a trick question that could never be answered and if it was answered, would be impossible to have fulfilled.

Just a thought....

KittyMom

This sounds like a better deal.
If given the option of living 5 years w/ no seizures & drugs & being able to drive & live "normally", but that last day of the 5th year being the day of your death, or continue as is for 50+ more years I'd take the 5 year deal & enjoy every day. I never wanted to get too old anyway.

i agree, curse!!

Hi All,

Since I'm not faced with szs of my own it's hard for me to tell for myself. But speaking from a Mothers perspective, I want my son to live 50+. We have lost a son and the devastation involved when you lose a child is unreal, there are no real words that adequately express.

For Jake, I would choose B. Fewer seizures or higher quality of life; hmmm. We have in fact been on the same path for the past couple of months. This or that -

The Dr had his Dilantin levels so high, yet there was no control... There was no quality, only a fear that my baby was forever impaired passed the point of recovery. I can deal with a few seizures, but to see him so drugged broke my heart. Yet when we were having gms daily there was no quality either and no learning going on...

This is something he will have to face for himself as he grows older I'm sure!

A trick question indeed! http://www.healthboards.com/ubb/wink.gif

Take care

Lisa and Jake

That is terrible!! I don't think I can think that way. I want to see as much of my kids lives as I can. I want to see weddings, proms, births, careers, etc. I would rather endure the pain than have that taken from me. Life is about the journey! I belive...

"That which does not kill you only makes you stronger."

I firmly believe that!! What you suggest with this "5 YEAR" deal sounds morbid to me. Are you suggesting that life is all about the good and not the bad? That your life is meaningless unless you have good MOST of the time? (HEAVY SIGH) Sorry to hear that!

thank you first for such a thought provacing quesion. I apologize for my spelling in advance : ) becasue I know what life was like prior to seizures, I know what if feels like not to have to worry about having seizures, or being on meds. I remember being a busy bee and having lots of energy, and being able to drive- i miss that freedom. but that is not my life anymore. so I accecpt that this is what is. I would choose to stay on meds. it gives me more freedom living life. I can go hang out now with my friends and not worry that i am going to have a grandmal/ I can go on little adventures with my girls and not worry that an ambulace will come and take mommy away. When I have grand mals its like 2 steps back. i get horrible headaches, and i am super tired and weak/ I would never accecpt the choice of living 5 free years of this. the irony of life is that the next time you turn around you could be facing cancer. I mean who knows. life is for living, good or bad

I would go for QOL, but I agree there is a careful balance because too many seizures ruins your QOL. Not being able to drive and subsequently becoming very dependent on other people comes to mind first.

At the same time, there is the "forced normalization" theory stating that the better you are able to control some individuals' seizures, the more neurotic and even psychotic features can show. That theory states that it is actually best (in many people) to NOT totally control the seizures. As Robin said, the side affects can be as bad as the seizures as well. (Depending on the severity of the side affects and seizures, ofcourse).

My meds make me a bit confused and the thought right now is to get me OFF OF Dilantin for just that reason. Because of the problems I have with confusion and the ADHD-like affects of many of these meds, I am not working. I've failed terribly in the work force. Atleast if my seizures were occurring regularly, I could get SSI. Confusion has gotten me diddly with SSI. I know. I've tried. I take IQ tests and score high, but my working memory stinks. (Executive functioning part of the brain).

If lowering my meds means I have a seizure once in a while, then so be it (if the seizures don't kill off all my brain cells, that is). I hate being confused.

Sandy

I believe in a combination of both. Whatever medication regimen that works to semi-control the seizures that gives you the best possible quality of life. I work for Easter Seals with people with developmental disabilities and QOL is very important. There are always choices to be made regarding med-free or medicated, but whatever balance that can meet both needs seems to be best. I have only had one seizure, however, I work with individuals who have many seizures daily. QOL is very important. Medication depends on the severity of your seizures. I, myself, will be choosing to go off the medication, even if that means I will not be able to drive. I would rather have a random seizure (like I said, I have only had one so my case is very different) while off medication, then take medication to prevent one from happening.

We deal with that question every day - very clear to us that quality would be our choice. That is what this journey has taught us.......Paula

I believe that if you look at it as QOL, and not as seizure control, you may be able to achieve a better goal (assuming that you could choose). Many people who do not have seizures are unhappy. For one or another reason they have a lesser QOL. I suppose that it depends on how you look at things. IMHO, seizure control does not mean a high QOL. Whatever it may be, those many things in life that makes a good QOL, or a poor one, seizures, IMHO, are only one element in a hugh equation.

Hi -so true that if you look at it as QOL and not seizure control, it may be better managed. The constant question in our minds is - Medication vs. seizures vs. quality of life. Qality of life means getting the best seizure control with the minimum of drugs. In our case, meds don't seem to work, so why use them. Who are we satisfying? It is so very difficult though, since we are making all the decisions for Rebecca. Just my thoughts to all of you. I think of you often and always.........Paula