Did any of you ever go through Denial?

[Sandy]

I did. I was 17 when diagnosed and I have to say they handled me in the beginning terribly. They never educated me on epilepsy at all. They just stuck me on medication and that was it. I saw a neurologist in the beginning but hated him. He told me I never could have children. He also told me my weight was causing my seizures (I was always probably 20 lb overweight). So I believed him for 10 years of my life without question. My husband and I even tried to go the adoption route, no luck. I started to have seizures again when I was about 29 years old. The medication I was on (Depakote) wasn't working. I told myself it would get better if I just lost weight (per the initial neurologist I had). I talked my husband into not making me go to the doctor or tell anyone else because I could "fix" it myself (which you do in denial). After two years of having seizures, I realized it was affecting my husband. It spiraled him into a major depression and he suffered from PTSD. He started to push me away. We did survive our marriage, but seeing what it did to him, I finally faced my epilepsy for the first time in my life (at age 31). I went to a neurologist who basically saved my life. She put me on Tegretol (I am now on Carbatrol) and I have been seeing her every year now. I have not had a seizure in 9 years. I also had my son in 2001, who is now 6.

I just still wonder why I let myself go into denial. I am a self-educating person too. When my husband suffered from depression and when my stepdaughter was diagnosed with type 1 diabetes last month I research and read until I dropped and then researched some more. I want to know everything. But when it comes to myself and my own epilepsy...I have never done that. onder: I still haven't really ever done much research into it.

Anyway, has anyone else gone into denial?

 

[skillefer]

Hi Sandy! I never really could deny my epilepsy....but my hubby and I have come to the realization that I may have to go back onto Depakote. I had great seizure control for 9 years. Then, my neuro took me off the depakote. Since then I've had seizures. So...that makes me think that my petite mals may be cascading into grand mals. And it makes us realize that kids may not be an option for us.... *sigh* Ah well. Today is a visit with the neuro. We'll see...Right?

 

[Sandy]

Hi Sandy! I never really could deny my epilepsy....but my hubby and I have come to the realization that I may have to go back onto Depakote. I had great seizure control for 9 years. Then, my neuro took me off the depakote. Since then I've had seizures. So...that makes me think that my petite mals may be cascading into grand mals. And it makes us realize that kids may not be an option for us.... *sigh* Ah well. Today is a visit with the neuro. We'll see...Right?

So is it the Depakote that doesn't allow people to have children? I am really confused why my first neurologist told me about not having kids and then I found out 12 years later it was actually possible for me. I hope you are able to get your seizures under control again.

 

[skillefer]

Thanks. I'm just hoping I don't lose my drivers license. My family needs it. As for the depakote, you can get pregnant on it...but there is a risk of birth defects. My hubby says that if it's a matter of choosing my health versus having kids, my health wins. He's so sweet.

 

[Sandy]

Thanks. I'm just hoping I don't lose my drivers license. My family needs it. As for the depakote, you can get pregnant on it...but there is a risk of birth defects. My hubby says that if it's a matter of choosing my health versus having kids, my health wins. He's so sweet.

Yes, there was a risk of birth defects when I got pregnant on Tegretol too...cleft lip, etc. but I took the chance and my son was healthy. I didn't want to go through another pregnancy and all the worrying again, though. I was happy with just one child. I have a stepdaughter too who is 8, so we have 2. Your husband sounds like a gem!

 

[mamaruns]

I went through denial, mostly because the doctors didn't seem to believe me when I first started having seizures. Most of them made me feel like it was all psychological, so I went through almost five years of telling myself it was in my head. Even though I finally got a diagnosis last Nov, I still catch myself in denial at times.

Your first neuro sounds like a real jerk (just like my first neuro). I'm glad you have a good doc now!

:e:

 

[brain]

I went through denial, tried to sweep
it all under the carpet with hopes it
would all "go away".

I was actually ashamed and embarrassed
of it. And when I had the seizures or an
aura or auras - I actually would excuse
myself if I could: be in my office or in my
bedroom, with the door locked.

I was so scared and frightened of them,
for I knew one thing - they did strange
things to me and I wouldn't know what
I did; and those who had witnessed it,
made a sport of me (when I was young)
and I don't even want to even think
about it. Even when I grew older, they
used to frustrate me, making me mad,
because they would come out of the
blue - just without a warning (and I
would be "on a roll"). I needed to hide
to save my face. Many times I cried.

I knew of no one who had this, I mean
it - absolutely NO ONE! So isolated and
cut off from society, even though I was
in the professionalism realm, it wasn't
a problem - but I had no social life at
all: People were scared of me. It had
been like this in my entire life, but I'm
used to it, it's the only lifestyle I know.
But when I DO manage to get a friend
or two, it ends up being short - all
because of a *stupid* seizure that had
happened that freaked them out, and
they backed waaaaaaay offfffffff and
wanting nothing to do with me any-
more. It was fun, for a short time,
while it lasted.

Even neighbors for years, kept their
distance - as if I were Fidel Castro or
some KGB Spy or CIA or something
like that. They never wanted to be
friendly with me (but yet they were
friendly with everyone else). The only
neighbor I had that was friendly with
my little son and I was the time my
ex was being a jerk, where he and his
wife liked us and we watched each
other's properties. But once we moved,
that was the last people I ever had any
close rapport with.

Until recently, but even where I am at
now, residing almost 12 years now, the
neighbors still keeps their distance, like
I'm contagious - but since my mom's
become involved, she's caused a couple
of the neighbors to be a little more
'friendly' but they still keep their level
of distance.

Isolation and Frustration is a major
problem. It hurts - because I've helped
these neighbors out many times in the
past, but when I ask them; they make
excuses ...

I'm weak and tired now, it's a struggle
to move forward every day, but I try
to press on, move on, the best I can.

 

[Tillikumtrainer]

Sandy,

sweetie everyone at least once goes through denial. Its hard to accept that this problem is changing your life drastically. I've gone through it and I am pulling through it. I always remember that My life is important to everyone around me, I should focus on caring for myself, but also my dreams to. Sometimes denial and depression go hand in hand. You should alwaying think to yourself that you are a smart and strong person, you are not going to let this get you down.

Your different, everyone is, imagine if we were all the same. as for your doctor i think someone needs a talking to he was wrong for saying what he did. You need an understanding doctor who can sit down and talk to you, give you options as well as in any case help you find a support group if need be, my doc actually told me about this forum. Remind me to thank him. I've only been here for two days and yet i feel soo welcomed. always remember we're here for you.. and if you need to scream vent etc.. theres always the padded room..

 

[Sandy]

I went through denial, tried to sweep
it all under the carpet with hopes it
would all "go away".

I was actually ashamed and embarrassed
of it. And when I had the seizures or an
aura or auras - I actually would excuse
myself if I could: be in my office or in my
bedroom, with the door locked.

I was so scared and frightened of them,
for I knew one thing - they did strange
things to me and I wouldn't know what
I did; and those who had witnessed it,
made a sport of me (when I was young)
and I don't even want to even think
about it. Even when I grew older, they
used to frustrate me, making me mad,
because they would come out of the
blue - just without a warning (and I
would be "on a roll"). I needed to hide
to save my face. Many times I cried.

I knew of no one who had this, I mean
it - absolutely NO ONE! So isolated and
cut off from society, even though I was
in the professionalism realm, it wasn't
a problem - but I had no social life at
all: People were scared of me. It had
been like this in my entire life, but I'm
used to it, it's the only lifestyle I know.
But when I DO manage to get a friend
or two, it ends up being short - all
because of a *stupid* seizure that had
happened that freaked them out, and
they backed waaaaaaay offfffffff and
wanting nothing to do with me any-
more. It was fun, for a short time,
while it lasted.

Even neighbors for years, kept their
distance - as if I were Fidel Castro or
some KGB Spy or CIA or something
like that. They never wanted to be
friendly with me (but yet they were
friendly with everyone else). The only
neighbor I had that was friendly with
my little son and I was the time my
ex was being a jerk, where he and his
wife liked us and we watched each
other's properties. But once we moved,
that was the last people I ever had any
close rapport with.

Until recently, but even where I am at
now, residing almost 12 years now, the
neighbors still keeps their distance, like
I'm contagious - but since my mom's
become involved, she's caused a couple
of the neighbors to be a little more
'friendly' but they still keep their level
of distance.

Isolation and Frustration is a major
problem. It hurts - because I've helped
these neighbors out many times in the
past, but when I ask them; they make
excuses ...

I'm weak and tired now, it's a struggle
to move forward every day, but I try
to press on, move on, the best I can.

Oh, Sharon, your post made me want to cry. I have never had the problem of people treating me differently so I don't know how you feel. My family has been really supportive (except for the trouble once in my marriage because I refused help) and I have had the same bf since 1st grade, she never shunned me. But you are right, this disease really screws with your mind and you try to wish it away at times. I also went through a trial period when I was 19-20 where I partied a lot and just didn't care what happened to me. I look back on it all now and it is so sad we all have to go through this.

My stepdaughter was just diagnosed with type 1 diabetes last month and I cried for days hearing this. Then I looked at my life and thought what I went through and hurt because now she has a disease she has to deal with too. When we bought her an ID bracelet...I for the first time in my 23 years of being epileptic got my first one. How sad is that?

Thank you for telling me your story.

 

[Sandy]

Sandy,

sweetie everyone at least once goes through denial. Its hard to accept that this problem is changing your life drastically. I've gone through it and I am pulling through it. I always remember that My life is important to everyone around me, I should focus on caring for myself, but also my dreams to. Sometimes denial and depression go hand in hand. You should alwaying think to yourself that you are a smart and strong person, you are not going to let this get you down.

Your different, everyone is, imagine if we were all the same. as for your doctor i think someone needs a talking to he was wrong for saying what he did. You need an understanding doctor who can sit down and talk to you, give you options as well as in any case help you find a support group if need be, my doc actually told me about this forum. Remind me to thank him. I've only been here for two days and yet i feel soo welcomed. always remember we're here for you.. and if you need to scream vent etc.. theres always the padded room..

Thank you so much, I am glad I found this place. I agree my first doctor was wrong and probably responsible for a lot of my psychological problems in my life in the beginning. I am glad I found a wonderful neurologist now.

 

[Meetz1064]

hi!

you've found a wonderful home here!

yes, we've all gone thru denial at one time or another. I know I've gone thru it several times, and I've had this "blessing" since I was a year old.

I'm so very glad, though, that you found a good neuro. It makes all the difference in the world. It really does. And, it speaks volumes for the both of you, that you were able to work things out in your marriage. Congrats.

Stick around, you'll learn alot here.

Meetz