difficulty accepting epilepsy - diagnosis later in life

[petero]

I was diagnosed later in life, when I was 38, I'm 41 now
and since then I'd had a hard time accepting that the epilepsy was real, like the TC seizures didn't exist
I had another TC type seizure tonight in a restaurant (note to self: lights crowd and noise perhaps trigger?) and at periods tonight now, about 5 hours later, I've been having memory blips, recollections of my last major seizure - and also it has been easier to believe
it's like levels of acceptance - and the levels of recollection kindof affirm this acceptance
I had been experiencing a sort of paranoia that people didn't believe I had epilepsy - maybe externalizing my own disbelief onto others, assuming people had the same disbelief
but this seizure tonight seemed in a way beneficial, ironically, to really open my acceptance

has anyone experienced similar sort of things?
being diagnosed of any disease I guess would bring a period of disbelief
I shouldn't imagine myself as being so unique I guess
millions and millions have epilepsy - as well as all diseases...

I guess in a way it's egotism - thinking I'm better than this sort of thing - or don't deserve it. But it's just a part of life.
Perhaps God sees us as individuals strong enough to tolerate a disease that has to have a place in humanity.

Thanks to you all in this forum - this has been really beneficial to me!

 

[s10sleeper]

Although I was not diagnosed late in life, actually diagnosed 17 years ago at age 14, it has taken alot to come to terms with my epilepsy, especially after I had them under control for a few years and then they came back even worse.

I was so used to being able to drive, having a full time job as a mechanic earning good wages, and being able to go somewhere if I chose to. When my seizures came back I also came down with chronic depression, although i had depression through alot of my life, the epilepsy made it worse.

During the post ictal phase of my seizures I do get into a period of denial that it happened, however, when I have tried to go to work after a seizure I have always been sent home as i am unable to think clearly and am in severe pain. But during that time I am extremely stubborn.

I can understand it is hard to come to terms with, I tell myself the same thing that others have it and some worse than me. I always get depressed though when I look around and realize how much of a limitation it has put on me. I have been single the whole time since my seizures came back, have become reclusive and my ADHD has gotten real bad, to the point that I have had to start on medication for it.

On the days that I haven't had seizures though anymore I forget about it alot of times except when I have to go somewhere. I am so used to walking though that it doesn't bother me.

Anyways, best of luck, keep your head up, things may still turn around.

 

[Blue Cat]

I was in complete denial until the third sz, and that's when it was real, I do have epilepsy, and that's why I joined this forum, this is the only place I know where people understand, no matter if it's just a few sz in your life, or frequent, it's still different, a little unnerving and sort of not real but too real. After a sz I'm calm and serene, what I imagine it is after electroshock therapy as described in the Bell Jar. And I remember the aftermath of every one in perfect graphic detail, from my husband telling me I had one, to going to the hospital, and the doc telling me I had a second one (apparently I always have two at a time, two hours apart. I think about it all too much, and it's not egotistical, it's a way to cope and to live knowing what you are and who you are. Good luck to you.

 

[BlueSkies2220]

Knowledge is the anathema to fear!
Perhaps in a way, denial of your situation involving epilepsy is based in part about the fear and stigma that surrounds this condition. You can find a lot of support here and guidance too..and it's ok to be in denial for a while, but at some point you may find that if you don't change your lifestyle or don't take your medicine or don't do as the drs. suggest - you could end up in a sticky situation. If you don't want to know what epilepsy looks like then don't surf youtube where you can see actual seizures.. and if youre really brave, record yourself having one. it may show you the actual processes that your body goes through while you are unconscious.

I surfed youtube and looked at tonic-clonic sz. I felt better afterwards knowing that at least i'm not as bad off as some, and i felt worse for some that i watched knowing how difficult and life changing this condition really is.

 

[RobinN]

petox - what helped me to understand my daughters situation when she began to have seizures at the age of 14 is...

I learned that Epilepsy is only a label
Seizures are a symptom
Doctors treat the symptoms and not the cause
I considered that for 14 yrs my daughter was seizure free. You have been seizure free for 38 yrs.
I worked to be proactive to find ways to raise my daughters seizure threshold. Nutrition has been our answer.
My daughter has been seizure free for 9+ months, and she remains med free.

 

[Cint]

I guess in a way it's egotism - thinking I'm better than this sort of thing - or don't deserve it. But it's just a part of life.

I started having seizures when I was 23 years old, just starting my new career in the airlines thinking I was going to fly and see the world. Mine initially started as CP seizures but over the months they intensified into TC seizures. I had one in the shower and suffered burns, so was in the hospital for 2 months. Since then, I have tried 10 medications, had brain surgery, and now the VNS and still take meds to control seizures. So for me, epilepsy has been part of life now for 31 years and yes, it is a part of life now for many of us. And when I see or hear someone complain about minor issues or asking "why me", I feel like asking, "why not? Why should the rest of us suffer and not you? What makes you better?" And what really breaks my heart is when I go to some of the epilepsy fundraisers and see children with epilepsy so bad that they have to wear helmets. Why them? Is it fair for them?

 

[petero]

...And what really breaks my heart is when I go to some of the epilepsy fundraisers and see children with epilepsy so bad that they have to wear helmets. Why them? Is it fair for them?

Well anything I could say regarding your sufferings seem already trite in formulation.

One thing about your quote (as harsh as my response might sound) is that: at least they're growing up with seizures as "normal".
I was seizure free for 38 years, which also means I was accustomed to "reality" for 38-years until that came to an abrupt halt.
At once, my life goes from chugging right along, to blackouts waking up with paramedics screaming in my face, and my having no idea where/who/what I am.
Besides, it's probably not a great idea to talk to children about complex emotional issues and about what life was like before/after seizures.
So, I come on this website to see if people can help convey to me some personal experiences I can relate to.

During/after my latest seizure it started to clarify that I/my brain may have been (and that in fact there is not some grand conspiracy against me) trying to rationalize injury, for which my mind has no relation.

learning works thusly:
fire : touch fire : touching fire = pain
therefore
the brain learns that to touch fire = pain

well for me, I think my brain has been trying to piece this logic-step process together... so it thinks... (considering these are the things I was doing immediately prior to TC seizures)
making potroast at the farm = extreme pain
sleeping = extreme pain
being at the office = extreme pain
at a burger joint = extreme pain
sleeping = extreme pain

the only common denominator to these events is that strange paramedics who appear from nowhere seem to cause this pain

but that ain't the case

but my brain has been trying to rationalize this type of logic-process regarding these seizure periods to see how to AVOID PAIN

I could have sworn that there was some type of conspiracy against me for a while.
Learning recently the link between epilepsy and schizophrenia came to me as no surprise whatsoever. And that scares the sh*t out of me. I don't want to lose my mind.
I've had maybe 6-7 seizures tops over a couple years.
I don't have seizures every day (that I know of). But as such, it is very difficult for me to grasp.
Studying the moon is easier than studying a comet that comes by every 10,000 years. So to speak.

I have made an appointment to speak with a counsellor for tomorrow. I'm staying open-minded but he wasn't sure what a tonic-clonic seizure was. But it goes beyond terminologies. It's more about modalities I guess.

Oh well. I need to check my head boo-boo to see why my skull is moving 3 inches from where I banged my head. It's creepy.
Peter

 

[petero]

I worked to be proactive to find ways to raise my daughters seizure threshold. Nutrition has been our answer.
My daughter has been seizure free for 9+ months, and she remains med free.

hiya RobinN
I am so glad for your progress!
I have been altering my diet. But if anything I need to eat more, so convincing myself of a more restrictive diet is tricky. Especially when I'm still not even myself convinced I have seizures. I'm sure several family members, coworkers, doctors and paramedics would disagree with my viewpoint on that subject though. thank you for your support and dietary encouragement

 

[gigi]

acceptance

petox1970:
This condition has plagued me for over 40 years now. Acceptance comes and goes, and so does the denial - depending on severity or types of seizures as well as how often they occur. Also, who we are as individuals.

I spent lots of years in denial - in my 20's tried to be superwoman, and quit my medicine (bad experiment); lying about it to people. Since the inception of the internet, I have learned lots!!! My family had to take me behind the barn and have a come to Jesus meeting. That was all I talked about! Since then I have calmed down, so I do not drive everyone crazy.

The regret is monumental looking back to realize all that has been lost from ignorance and denial. (In 1987; my second child was stillborn due to tonic clonic seizure). In 2003, I went status and almost croaked, then came the alarm and panic of almost buying the farm. I have to some degree come to terms with this. Now, I focus on prevention, which gives me some control and power. THAT is my saving grace. Now I deal with long term side affects of my medicine. I know what my triggers are (at this writing) and try not to stress over what is my criptonite. Stress! That is all the wisdom I can impart at this time. Keep coming back to CWE, it will be somewhat of a salvation for you in the bad and good times. {{hugs}}

 

[petero]

I know what my triggers are (at this writing) and try not to stress over what is my criptonite. Stress! That is all the wisdom I can impart at this time. Keep coming back to CWE, it will be somewhat of a salvation for you in the bad and good times. {{hugs}}

when I found CWE it was a saving grace. I'm too strong of a guy to have to admit to any frailties or have the time to do so to a doctor face to face. :sad: sure sure sure
besides, medical care can get expensive, and it can also lack the first-person relation of issues
"the other day ____ happened to me..." can mean a lot more than "I've seen many patients who have expressed that ____ happens to them"
and many {hugs hugs hugs} in return
Peter

 

[Cint]

One thing about your quote (as harsh as my response might sound) is that: at least they're growing up with seizures as "normal".
I was seizure free for 38 years, which also means I was accustomed to "reality" for 38-years until that came to an abrupt halt.
At once, my life goes from chugging right along, to blackouts waking up with paramedics screaming in my face, and my having no idea where/who/what I am.

So, I come on this website to see if people can help convey to me some personal experiences I can relate to.

I only said that about children is that when I have my "pity parties", I think of how it could be a hell of a lot worse. I was seizure free for 22 years and was accustomed to "reality". My life as I knew it came to an abrupt halt, too, and people still don't 'get it'. The questions I still get: "Why don't you have a job?" What do you do all day?" Don't you get bored?" on and on it goes..........

And I also have had my share of depression and counseling, so I think seeing a counselor will do everyone with epilepsy a world of good. I don't think you're schizophrenic, tho.

 

[BlueSkies2220]

Meditation can do a lot of good. It can enable you to calm down, to face inner fears, to see yourself in a new light, and to sort things out in a way that you can handle it. It also offers an escape when life gets to be too much. Meditation is easy, it just takes practice. It can be a profound experience, too.

 

[petero]

I only said that about children is that when I have my "pity parties", I think of how it could be a hell of a lot worse. I was seizure free for 22 years and was accustomed to "reality". My life as I knew it came to an abrupt halt, too, and people still don't 'get it'. The questions I still get: "Why don't you have a job?" What do you do all day?" Don't you get bored?" on and on it goes..........

And I also have had my share of depression and counseling, so I think seeing a counselor will do everyone with epilepsy a world of good. I don't think you're schizophrenic, tho.

well hang in there
I'm glad you're around on this site so newbies like me can lamprey off of your sharkdom

 

[petero]

Meditation can do a lot of good. It can enable you to calm down, to face inner fears, to see yourself in a new light, and to sort things out in a way that you can handle it. It also offers an escape when life gets to be too much. Meditation is easy, it just takes practice. It can be a profound experience, too.

thank you

 

[knothing]

Welcome to 41 which I am as well. I was diagnosed at 37. I spent plenty of time learning all I could about treatments and learn about my condition of TLE. I spent many hours reading about so many people worse off than I am and knowing that others have had it worse and others have had it better.

I accept that I have Epilepsy and I accept that I am following the best course of action for me. I accept that I will face whatever each day brings with all that I have. I am not frail by any means and to be honest really being strong requires acceptance of who you are. The hardest part are the people who don't have seizures because they don't get it no matter how close that person is. It is hard to explain what my seizures are and are like to recover from but like many others we just do it. Even my wife of 17yrs does not fully get it and she admits that she would have to have one to fully understand how you get back up and move on.

As author Paul Tournier said - Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices.

 

[RobinN]

hiya RobinN
I am so glad for your progress!
I have been altering my diet. But if anything I need to eat more, so convincing myself of a more restrictive diet is tricky. Especially when I'm still not even myself convinced I have seizures. I'm sure several family members, coworkers, doctors and paramedics would disagree with my viewpoint on that subject though. thank you for your support and dietary encouragement

Sorry if I made you think that one would have to consume less. That simply isn't the case. It is just replacing that which is not healthy, for an abundance of what is.

 

[petero]

Sorry if I made you think that one would have to consume less. That simply isn't the case. It is just replacing that which is not healthy, for an abundance of what is.

no don't worry - it wasn't interpreted in that way
it's just that I've been allowing myself to not worry as much about diet lately due to fear of having too restrictive a diet, or dietary concerns, that can often lead to my not eating at all

 

[RobinN]

From my experience, it is the quality not the quantity one needs to be concerned with.

 

[petero]

hi Robin - very true
I hope I haven't come across as weird through this thread - I've had a bad few days
Thanks
Peter

 

[BlueSkies2220]

No its not weird. when i have come out of a major seizure, it makes me feel dopey for a few days.. its almost a high for me! I know that sounds strange but when my dopeyness leaves, its another high feeling to get my memory back and to feel like everything is all right again.

The thing about this condition is that it is neurological, so it affects the mind as well as the body. It changes your life in a profound way. You realise your mortality at times. You are thankful to be alive as well, when you come out of it.

But, you are not alone in this journey. Many of us have been there and done that, and we have survived. We are tough. We get knocked down and rise again, stronger than before. We find ways to work around what we don't have any more. We make use of ourselves in creative ways because we see life from a different perspective..when you embrace it as a beautiful thing, and as a part of your life, your perspective changes.

in times past, epilepsy was known as the 'Divine Sickness' - it was a sign of divinity, knowing, knowledge, that those who had this divine sickness were connected with that divine presence. It has been revered, feared, misunderstood, and at the same time it is an enigma for those that experience it, time and time again.