What do you think?

[morgan381]

After meeting all of you here, I've gained a different perspective on epilepsy. For so long, I was only able to see how E has affected me--not my family, not those who have had it since birth, etc. Sort of self-centered I guess.

For the past couple days, I've been wondering if it is 'easier' (for lack of a better word) to have epilepsy since birth or to develop it later in life. (I know it's not easy for anyone) What do you think?

I was diagnosed in early adulthood. I felt like my body had been working just fine for years, and all the sudden, out of the blue, for no good reason my body betrayed me. Does a person who has had it from birth just come to think of it as 'normal'? Does a person who develops it later in life, have the advantage of a more 'normal' childhood? Does it make a difference at all? (I know it just sucks for all of us)

Please don't be offended by this...I was just wondering what you all thought.

[RobinN]

Morgan, I have to ask you, why do you think you were healthy for so long and now you are hit with this disorder? In my opinion, you have the opportunity to work very hard to get back to a place of health. With no known malformations, without head trauma, you have been give a few symptoms that are finally making you aware that something is internally wrong and you need to figure out what that is. You can turn this around....

As for easier... if it is not one thing it is another. We have been handed these challenges for a reason and making positive changes in our lives and putting a hand out to our neighbor is what is expected. Climbing out of ourselves, and ridding our minds of the poor me mentality, moving forward and honoring all the gifts that we were blessed with. That is what it means to truly live in the present.

[Crazy Monkey]

I have been epileptic since the age of 10, coz it was such a young age I do not really remember my life before seizures, it seems like I have been on medication forever.

I think that if you gain Epilepsy later in life it will affect you in a different way as firstly you will lose your driving license which also means a large part of your independence, so you will need to make some adjustments, such as using public transport, getting lifts, walking etc, whereas I am use to not having one and have had years to get my head around the idea (but it doesn't stop me from desperately wanting it), I have already learnt my restrictions and what I am capable of and know the activities that could be dangerous to me, I am used to thinking before I do things, whereas you have got to start from scratch and learn a whole new way of living, things that you use to do naturally as part of your daily routine have to be rethought and this probably turns your world upside down as they can be the simplest of tasks, like climbing step ladders to clean your windows, ironing, pouring hot water from a kettle.

I think there is a difference it is harder to adjust once you are an adult you get more set in your ways and suddenly your life changes drastically, but at the end of the day, we both have E and we now share the same restrictions, best thing to do is to get into a positive state of mind and do you best not to let E get the better of you...

[skillefer]

Hmmm....good question. I don't know that it's easier for someone who has had E since childhood...but it's probably different. After all, every one of us is different, and we all react differently. I've had E since I was 3 years old. But I went 9 years without it, and not being on meds. Then I started seizing when I was 13 and was put on 2 different meds, which worked fine. Went another nine years, went off one of the meds (depakote) and started seizing again. Now, I've gone 2 months without. My experiences are going to be different than some others. But I do know the embarrassment, and reaction of the kids after I seized as a child. I remember the teasing, or just being ignored and only having one or two real friends till I went to college. But then again, I also gained alot of strength from going through what I did. So I don't know if either way is "better". I think it just depends on what you learn from it.

[morgan381]

Morgan, I have to ask you, why do you think you were healthy for so long and now you are hit with this disorder? In my opinion, you have the opportunity to work very hard to get back to a place of health. With no known malformations, without head trauma, you have been give a few symptoms that are finally making you aware that something is internally wrong and you need to figure out what that is. You can turn this around....

Well, I can't say 'perfectly healthy'...it's possible I had a few c/p's in high school... Left temporal lobe slightly enlarged (doc's don't seem to think it's the cause), EEGs show no focal point... I know that nutrition plays a role in every aspect of our health, as does physical and emotional stress.

I was pregnant, running a business in my boss' absence, only planning a 1 week maternity leave, didn't have the best eating habits... Baby was born on Friday and I was back at work (part time) the following Monday (3 days). I lasted about 2 weeks, before I decided I just wanted to be a mommy for a while. When the baby was about 5 months old, I found another, much lower stress job, but ended up leaving it to devote more time to the business my hubby and I had started. This resulted working longer hours, more fast food, less "me time". I went almost 2 years without seizures from the time my son was born...

After the 2nd seizue, I made some long-term changes. Strictly limited fast foods, no artificial sweeteners, vitamins, organic produce, etc, but I continued to have seizures, so I started taking meds. That worked well for a while...

Now, I'm just confused. I haven't been able to find the right combo, but I'm still working on it. I saw some questions you posted to ask the ins company about NFB. I'm going to check into that again, now that I know what questions to ask...

As for easier... if it is not one thing it is another. We have been handed these challenges for a reason and making positive changes in our lives and putting a hand out to our neighbor is what is expected. Climbing out of ourselves, and ridding our minds of the poor me mentality, moving forward and honoring all the gifts that we were blessed with. That is what it means to truly live in the present.

I have no regrets in life, just lessons learned...usually the hard way. Same applies to the challenges we have to overcome--they make us stronger and more determined. In my efforts to gain a wider perspective on this E business, I just wondered what others have felt...I realized that for years, I had been very self absorbed in the poor me mentality.

[Meetz1064]

it's easier having it from birth, or near birth, like I have. I've had it since the age of 13 mos., and I don't remember what it's like NOT to have it. Or not to be on meds, or anything. The one time I DID try to go off meds, WELL, that was a MISTAKE. Won't do it ever again. Nope. No sirree Bob.

I grew up with a stigma around me, that much is true. But, my E was well-hidden. Not many people knew. I was fairly healthy, and only a few of my friends knew. I didn't have many seizures growing up, so I didn't have the stress about the drivers license, but mine DID go out of control for a while once I hit college. For a variety of reasons.

Just my thoughts........

Meetz

[brain]

For the past couple days, I've been wondering if it is 'easier' (for lack of a better word) to have epilepsy since birth or to develop it later in life. (I know it's not easy for anyone) What do you think?

I was born with it - it is DIFFICULT when you're born with
it considering this fact:

To you ~ having experienced normalcy and I have not, so
when a Neurologist or Epileptologist asks you this question
of "What is abnormal to you?"

YOU can answer that question, however I cannot, for to me,
everything is normal.

See the picture?

Is it "easier"? No, 1000 times No! It's HARDER! I cannot stress
nor express all that I've had to undergo since being a wee-one
all the way up to the present state - all the complications,
confusions, misunderstandings, dilemmas, and so much more;
because I do not understand what they want nor what they
are looking for because I have never experienced normalcy.

But as my learning in Neuroscience & Neurology has increased
dramatically; I'm able to understand to a level and degree - but
I do have a lot of problems with their conclusions, findings, data,
et cetera ~ partially because of "I've lived with it all in my life and
I know what it is like" - but then again, what pertains to me may
not necessarily apply to others who were born with it, since I've
also have other multiple birth defects as well.

Am I being very clarified in a simple sense?

[Birdbomb]

Sudden unexpected changes in lifestyle are hard at any point in time. I was 46 when I was knocked down. My kids were grown and I went back to school. I was 2/3 of the way thru, also learning to play piano, something I had always dreamed of.

Highly independant, I was suddenly not allowed to be left alone, could no longer drive, taking handfuls of medications that made me into a zombie.

Lost my ALL my algrbraic formulas, all my math skills, map reading skills, the ability to get around my city, have memory problems, can't spell for $hit. I felt like I had lost my life and in a way I did.

I had to grieve for who I could no longer be and for the so many things taken from me, my school, education, dreams, relationships. Never to be back to those things dear to me.

To have and to lose is harder than to never have and not know what's it like to lose.

But this is MY preceptions. As each case of epilepsy is different, so is the reality and experiances.

I still miss my colllege and remember it fondly. I had a 3.4 GPA but in High School I failed. College was very special. It STILL hurts as does not playing piano.

[morgan381]

I guess 'normal' is relative...I can see both points of view.

I know what it was like to be made fun of as a kid for something I had no control over (red hair and freckles, but not E) Kids can be so cruel.

I was able to get my license, but had to give up driving privilidges several times. It's hard to give up independence once you have it, but I can't imagine what it's like never to have it... Let me tell you, it's hard when you live in the boonies...10+ miles from teh nearest gas station, grocery store, etc

I guess we've all experienced the stares, prejudice, and hurtful comments--that's never easy to deal with.

I guess the official answer to my question is it sucks period and it's never easy.

[Birdbomb]

I guess the official answer to my question is it sucks period and it's never easy.

Quoted for Truth!

[TeeTees]

I'm enjoying this - good thread

I've had it since birth, and in one way I'd say it's better for ME as I haven't experienced a non-seizure life.

However, would I feel crappier about it if I was to have 'developed' it at a later stage, meaning I have to give up things such as driving/careers etc. ?....I don't know.

I've often asked this question regarding blind/deaf people. Is it easier to be blind from birth not knowing what you're looking at, or is better to have an understanding on what people are describing ?.....swings and roundabouts.

All in all, I don't think there's gonna be a true straight answer to this one - each person learns how to 'cope to the best of their abilities' with the problem.

Me ?....I still get p!ssed about having E, and ask the why me questions...and that's for 39 years.....you think I'd kinda be used to it by now, but that's another thing I have to try and explain to others....you get 'used to it', but still don't accept it

[wonderdogs]

One thing that has been difficult for me, having be diagnosed when I was 28, is being unable to pin-point the CAUSE of the sudden onset.

[epileric]

When I really young I never knew I was any different. I do appreciate growing up & knowing my limitations & not feeling as though they're imposed on me.

I do have to admit that occasionally when I'm late I do wish I could drive or that I had better concentration but other than that it's just all part of me.

[homemom360]

(FROM BIRDBOMB)
Lost my ALL my algrbraic formulas, all my math skills, map reading skills, the ability to get around my city, have memory problems, can't spell for $hit. I felt like I had lost my life and in a way I did.

I had to grieve for who I could no longer be and for the so many things taken from me, my school, education, dreams, relationships. Never to be back to those things dear to me.

To have and to lose is harder than to never have and not know what's it like to lose.

But this is MY preceptions. As each case of epilepsy is different, so is the reality and experiances.

This is the same kind of situation i come from. i was 20 when i started having seizures. i was in school for a degree, was recently finally living on my own, had things going very well and was on my way to my future. then in one quick step that was all gone. i went from being able to do everything on my own, working two jobs and being independent. to not even being able to do anything right the first time, being able to go nowhere with out notes as to why i was going there and what i needed. on top of all that i had to deal with the depressing fact that i could clearly remember the person i use to be...but was no longer and never would be again...when you're born with it or have it happen as a very young person, the question of "what is normal" is answered by what has been experienced for as long as you can remember. then the abnormal is what has recently changed. every bodies "normal" is different, that's why the doctor asks that question rather that handing you a questionnaire and having you mark yes or no, because there is no universal "normal". having E is no different than any other disability. look at people who are paralyzed, those who have been that way since birth, that is their "normal", they have no experience with the use of those limbs, and the things that allows them to do, but those who for some reason are left that way latter in life have a different "normal" because they have experience to draw on as to what is different in their life. in the decade that i have had this condition my "normal" has changed from the one it was when this started, because my life has changed, so when the doctor asks i draw on recent relevant events not things that are over ten yrs old.
(as dennis miller use to say, "that's just my opinion though, i could be wrong.")

[Belinda5000]

Morgan,
I was was was 2 when docs said I had epilepsy but I've learned from older sister that I was having seizures long since before I was dx'd.
I don't think it's easier at any age for anyone.

I finished H.school my sisters didn't they had know health problems.
I was a very determined person and still am.
Belinda

[tinasmom]

Morgan -

I think that you have asked a very good question. Both my daughter and granddaughter were diagnosed at the age of 6. My daughter struggled with wanting to be like all the other kids and even faked taking her meds, which of course triggered seizures. I think it is a hard struggle no matter what age you are diagnosed at.