losing faith in life

[petero]

lost faith in the medical community since my last seizure
I would guess it was my fifth or sixth major seizure event
I'm 41 and was diagnosed in 2008
I don't know if I've had epilepsy my whole life
I'm not even sure I have epilepsy at all
all I know is that days disappear and that people enter into my dreams
the last time I was at the ER in December it was awful
I was in extreme pain- I couldn't stand erect so bad
the ER experience still feels like it will haunt me for the rest of my life
I never saw the movie "Inception" but the invasive nature of this ER trip is probably similar in terms of invasiveness into my subconscious, or consciousness, I'm not sure which is which anymore at times
it feels like I've been under some hypnotic state since then
maybe it has to do with the morphine they gave me
the interactions with people I recall as a tattoo on my dreams
these events have been like an evil ghost that is right around the corner at all times now
I may be having a good day and suddenly it is as though someone who had assaulted me at the hospital during my seizure is lurking to abuse me or to manipulate me again in some way using some sort of implanted hypnotic suggestions
I do not agree to these things and it feels as though they're going to manipulate me to do things that are wrong
I feel like I need to file a lawsuit against the hospital for malpractice, but the only witness is in my head, and there is no way anyone could concur with what I would need addressed as being of issue
this has made my faith slip
faith is all I have left
everything was fine prior to this seizure event
they said I had psychotic seizures
I don't have any idea what that means, what that means in terms of what I did
no one has been able to explain to me what that meant, or what I did
I'm a private person and these things just have invaded so into my private mind I don't know what to do
imagine someone who randomly emerges from under your bed-covers at any given moment, you don't know this person
now imagine 50 people
limbo
I'm stuck in limbo
I feel like I should move
but I doubt that would change anything
it's a conspiracy now between everyone in the world and myself
someone needs to pay for this injustice
epilepsy is constant injustice that destroys ones sense of being and self?
was that because of a psychotic seizure?
there is something people aren't telling me
is this what epilepsy IS?
as a recent diagnosis I'm still not even sure what this is all about
either this is epilepsy or that hospital broke something and needs to feel the wrath of vengeance

 

[petero]

I can add that my mom urged my trip to the ER
she was with me at the hospital
since then I've wavered in faith in her and my family
I deflect blame for the pain onto them
I don't know what to do anymore
I try to just move on and let it slide
but it doesn't work out that way
the ER changed my being
there is a gap in my life
transplanted into a different animal
it doesn't just slide

 

[Nakamova]

Hi petox1970, I'm a gonna say this again: Find someone to talk to. You can't shoulder the confusion and the depression and the fear and the anxiety all by yourself. There are people who are trained to get you through this, to give you perspective on what's happened and the tools to move forward.

I know a big part of you doesn't trust the medical establishment now, but there are therapists and counselors out there who will have your best interests at heart. You just need to take the first step.

 

[Bernard]

lost faith in the medical community since my last seizure

No one is perfect. Lots of people complain about poor experiences with bad doctors / medical care. Many also extol the virtues of good doctors / medical care. Sometimes people have to go through a number of bad apples before they find a good one.

That said, maybe there are some things you can do on your own to lessen your dependence upon the medical community.

I would guess it was my fifth or sixth major seizure event
I'm 41 and was diagnosed in 2008

If it makes you feel any better, my wife has had over 100 major seizure events in the last two decades - including a period of time when she was practically a vegetable (not even capable of remembering the names of our children) - but has since stabilized and managed to get her seizures pretty much under control. It is possible.

... the ER experience still feels like it will haunt me for the rest of my life ...

FYI: http://www.coping-with-epilepsy.com/forums/f22/emotional-trauma-stored-body-520/

Also, I'm not clear on exactly what happened at the ER, but hallucinations can be associated with some types of seizures (especially complex partials and temporal lobe seizures) and sleep paralysis.

 

[petero]

Hi petox1970, I'm a gonna say this again: Find someone to talk to. .... There are people who are trained to get you through this, to give you perspective on what's happened and the tools to move forward... but there are therapists and counselors out there who will have your best interests at heart. You just need to take the first step.

psychiatrists I guess? are there specialists in epilepsy?
another issue is that I don't have insurance so the primary immediate option is to go back to the hospital system with which I have these issues!
I'll look into another option I know in town...

 

[grateful7677]

I can agree with a lot of what you just said, and it is extrremely easy to get in that head space of negativity, in fact I was almost there when I logged on, it is why I logged on.

The best thing to do is try to turn it around and look at as a positive experience, it is what it is.

You are here for a reason with this condition whatever it is, whatever it may be...the doctors can classify it with whatever terms they consider...its all semantics, I see the so called psychochotic symptoms <some may say I rationalize> (whether they be from the meds or from my TBI) as more of part of my spiritual journey try to view all of it as lessons that I need to learn along my journey.

I constantly try to ask myself, what can I learn from this experience, what will make me a better person?

Sometimes I feel down in the dumps and I feel I have been dealt a poor hand, but then I remember it could always be worse, and would I want to walk in anyone elses shoes, NO WAY! This ride has been shaky for sure, but good times I have had, and for those I am grateful

Try to make the best of the times when you are lucid!

I hope this helped, I know that you helped me


PLHeleven SF~~~~

 

[hootie]

It may be helpful to try to find a homeopath (one with counseling abilities might be most appropriate) to help you overcome the violation/confusion/disgust you are feeling.

HUGS!

 

[knothing]

Epilepsy is an oddity that takes many forms.
Epilepsy is a life changing event.
Epilepsy is path to treatments and/or medications that you have never met before.
Epilepsy is 8 letters.

Really it is a personal journey for all afflicted and for their family and friends. With an infection you get prescription, follow a treatment plan and get cured. Why? Because medical professionals understand an infection. Less understand Epilepsy. For Epilepsy it takes a journey for many to find a medical professional to effectively help.
Find people to talk to. You found this site which a good place to start and where I started talking and listening to others. It helped me gain knowledge, understanding, and hope. At the end of my day it is always 8 letters on the sole of my left shoe while I walk on my journey.

 

[Flex Herns]

Epilepsy is tough to get through. When I was diagnosed at the age of 19, I thought my life was over. I realized two years after that (2001) that there are specialists in epilepsy, not just neurologists. Here in New York, I visit epilepsy specialists and they've managed to control my seizures to a point that I've gone years without one.

One quote that rang in my mind is "Epilepsy doesn't stop your life; it shows you a new way through it." You've been detoured from your normal way of life, but that doesn't mean you won't get where you want to go.

 

[petero]

One quote that rang in my mind is "Epilepsy doesn't stop your life; it shows you a new way through it." You've been detoured from your normal way of life, but that doesn't mean you won't get where you want to go.

well I'd like to go see some medical professionals about it
but I can't bring myself to really trust hospitals anymore
something about my last postictal trip to the ER has destroyed trust
it is very difficult if not impossible
this is something I've never had to comprehend before

 

[C0urt]

left foot, right foot, left foot, left foot ( for some of us)
You learn after a bit, you have to try your best to keep going.
And lots of sitting in waiting rooms.

 

[Cint]

well I'd like to go see some medical professionals about it
but I can't bring myself to really trust hospitals anymore
something about my last postictal trip to the ER has destroyed trust
it is very difficult if not impossible
this is something I've never had to comprehend before

I, too, have had my share of seizures, medications, surgeries, and depression and often times felt like there was no light at the end of the tunnel. And as Bernard said of his wife, there were times I was having so many seizures and was so medicated, I could not remember my kids names. Sometimes the meds didn't control the seizures and 911 was called, therefore made the depression worse--- to the point of me being suicidal. My epileptologist directed me to a neuropsychiatrist and I was also seeing a psychologist at the time to talk about the problems epilepsy brings into ones life.
If you don't have insurance can you see a social worker or counselor in your area? Or call the epilepsy foundation and ask for assistance.

http://www.epilepsyfoundation.org/about/takingstock/team.cfm#swcounselor