I believe in what you express
 

Dear Sammy

Just spoke with Saraeve my eldest child
She is 35
This I mentioned already to you
I want you to know something very important

When my child Saraeve had her first seizure
I cannot begin to tell you what the next ten years had in store for us
I went through the entire process including all test and the brain surgeries
She was in her very early twenties
Her first doctor
neurologist Dr. Rosenbaum of Teaneck NJ
NEVER
I MEAN NEVER dismissed what she would express to him
how her out of body experience felt like
For her she said it was like déjávu
She still to this day has many moments feeling that out of body experience
Surgeries did not help
And she lost vision in right eyepermanently
Blind in right eye
She has learned to live with it
However my point I want to make
This doctor never NEVER gave up on my daughter
Most every test and I mean sooooo many tests
and then the meds
It was very frustrating for her doctor knowing what she was going through
and it was real
NOT IN HER HEAD
WHAT AN OXYMORON
In the end while hooked up in the hospital and I mean hooked up
wires and leads all over the place and then it happened as the doctor was trying to provoke a seizure
she had one alright
had a grand one passing out
Her entire brain seized
She was passed out for a short period of time
As each time one suffers a seizure brain cells die on a much quicker scale
Again my point
YOU STICK WITH WHAT "YOU KNOW" "YOUR OWN BODY AND MIND"
Don't let anybody tell you what you are feeling
Unless they have the same issues as you and my child have gone through
She never allowed the few doctors who told her there wasn't any thing wrong
Guess what
She was diagnosed with "occipital lobe epilepsy"
In your faces to the doctors who tried to make her believe there wasn't anything wrong
I believe you 110%
I'm going off subject for a moment
BECAUSE
You are such a smart young articulate human being
You have much to offer with this horrible feeling it causes you to feel
And you help others by expressing your story
The reason I changed subject
You again are so aware of your own body
I so impressed
Recognized when missing your dose how your body and mind behaved
Chances are you are 100% correct that it is from the missed dose

Just to help you understand I get you
I want to share something personal

I had a double radical mastectomy 1/9/2012
After finding my cancer lump in my right breast
Know this as a FYI
Men too are to check their breasts as they to are equally susceptible to the same disease as women BREAST CANCER
Statistically neck and neck with women
I was floored to hear the statistics

We hear you loud and clear
And I hope and pray there be a better understanding of how it affects our brain and body
I speak of medicines

I began taking the medicine called tamoxifen
This drug shut down my estrogen out put
Shut my estrogen down
Because my breast cancer is estrogen driven
CAN YOU IMAGINE
IT HAD TO BE THE FEEL GOOD HORMONE MY BODY PRODUCES
NEEDED TO BE SHUT DOWN
And what followed wasn't fun
My feel good hormone gone
Causing me to feel unnatural thoughts and physical changes
This just a small example
The facial hair much thicker on my face
I can still get away with a decent look
You know what mean
Like under my nose
A slight mustache
I never liked waxing or any kind of hair removal
So I bleach it
Like I said
I can still get away with it
But it's there
And it's not my imagination what I feel
Depression of another kind added to the other stuff
And this new kind of depression that began as a result of my estrogen depletion being on tamoxifen
Went through menapause quicker
I know my body like nobody else
As do you know yours
I know my brain and what it feels and thinks
And I so understand your frustration
If and until this all works itself out with your doctors
you MAKE them listen
I have such HOPE for you
And no fault of your own
And certainly not something to be embarrassed about
Stand firm Sammy
But in the meantime
If you can remember
You are responsible for your happiness
With what you let in and out of YOUR LIFE
You matter
You are a strong individual who has a good grip on what's happening
Making friends isn't easy
But you keep fighting this fight
Don't let it consume you
Make time to give yourself HAPPINESS
HOWEVER you may
Just get that belly laugh in a day would be an awesome thing
Wouldn't you agree
Who doesn't like to laugh

Glad I dropped bye
I will do so every once in a while

You matter
And so many care about you
Have a wonderful day
Know you are thought about
Enjoy all you can
Life goes on by just so quickly
Make it count for you
Love
Me

I'm sorry you still feel like ****, and you continue to feel frustrated and discouraged Sam :hug::hug::hug:

The truth is that you do have diagnoses. You do have epilepsy, anxiety, and depression...

Since your neuro has found that your epilepsy is under control, it seems to me that it's time to take another look at how your anxiety and depression are being treated. I think you could benefit from some med adjustments or changes in that area, and/or therapy (if that is something you're comfortable with).

You can allow your pdoc to contact your neuro regarding possible med changes if you are worried about potential effects on your epilepsy. Your pdoc will be aware of any interactions with the Trileptal and Lexapro.

I hope things start to go your way soon :hug:
Keep writing. We're all pulling for you :hug::hug::hug:

Kay

Hi Sam!

Thank you for updating everyone here. You have so many members here that definitely do care about you, are constant wondering how you are doing, and are on your side knowing that better days will one day come to you.

Many caring hugs to you Sam.:hug::hug::hug:

Dear Sam,

You don't know me, and you may never hear from me again, but I just want you to know, that there is someone out there that knows how you feel. That another male has the same emotions as you do.

I hope you believe me when I say that, once the drama of school is over, once all of the pettiness of that world is left behind, you will be able to find someone that loves how sensitive you are, somebody that can see the strength behind your pain, and love you all the more for it.

I used to live on this forum, too broken to change, and too hurt to want to, but time makes it easier, and eventually it starts to hurt less and less, until the things that you used to be ashamed of (all of those feelings and emotions that men aren't "supposed" to have) you'll become proud of; like you can experience a level of feeling that other men only dream of. Like you can love a person more than they ever believed possible, and they will love you all the more for it.

I know it feels like a burden, but once you can fully understand the depths of your emotion, you will be able to put that emotion into someone that matters to you, and they will think that you are perfect, no matter how broken you feel, and you will revel in every second of what you used to think was misery.

You and I, we feel what other people can't, and we can spread more happiness and love than any "normal" person could dream of...... you just need to be patient... and I know it's not easy... but when your peers finally catch up to your mental maturity, they will think that you are amazing, and you will be able to care for them in a way they couldn't have previously imagined, and they will love you for it.

We just need to survive long enough for that to happen. I know you can do it, because I have lived it, and I think you are just like me.

You are so much stronger than most people ever need to be. I hope one day you understand that.

You do know
 

As it is our travels and our passage in life
You have hit the nail on the head
Sammy
thelonely1 has lived it
Listen to what the message is
Your intellect is keen
You are just as he said
And like I may have mentioned
Once you find not just one but an array of persons
that they will be the "lucky" ones to know you
As I am honored to have met a very beautiful human being such as yourself
The message is so on the money
You will as time goes on and you begin to understand your emotions and find the ways to understand them for you
And you will spread all that love into your moment in life
It is a difficult time when in school
As I also felt no one got me
You are not alone
We are your family your village
You have a home with us
Lonely1 thank you for your graciousness
It has gone through my veins
Thank you for your honesty of your own personal
experience strength and HOPE
God bless
May your life be filled with happiness
as the words of a wise man yourself who had the heart to share
and touch others in more ways than you will ever know
To you both
Live life to the fullest
Love
Me

Hello everyone,

It has been a while, but I wanted to update those who care.. (If Anyone)


Basically, nothing has changed. Im still on lexapro (Anxiety?) and still on trileptal (TLE). I'm also now on some acne meds because my acne is so bad. I still feel just OK not 100% but just OK, but everyone says I'm fine, so I guess I'm fine.

Today marks my 16th birthday. And I have no idea why, but today I have had extreme anxiety and depression. No clue why, I've been pretty decent recently in terms of anxiety, and felt no sadness. But all the sudden, today I just feel sad. Every time someone wishes me happy birthday I just get more sad. I feel like my brain has sub consciously made a connection between anxiety and this time of year.

I just don't feel like I deserve all the gifts and birthday wishes. I just want to curl up in a ball and hide.

Happy birthday Sam! You do deserve it and so much more. Many hugs to you to let you know that I care, and I am sure that may others here do as well. :hug::hug::hug::hug:

Happy happy birthday sam.
Happy sweet 16!
sorry about your acne, I am 53 and still deal with it.
use acne free like proactive but thru target and half the cost.
bizi

Dear Sam,

You may be feeling sadness and anxiety because your birthday is a reminder that another year has passed without the improvement you want and need so badly :hug:

Other people may think you are "fine" because our outsides don't always match our insides. Over time I've learned how to hide what's going on internally very well (most of the time) so I don't upset other people and I can fit in better. I hope you have someone you can talk to so that you have an outlet, and are not always keeping your feelings inside.

I'm so sorry that you are feeling more sadness and anxiety lately :hug:

We are always happy to hear from you Sam, and look forward to hearing updates. Please don't doubt that we care because we do :hug::hug::hug:

In addition to the people who reply to you, there are many people who read on the forum, but don't post. Many are likely following your thread with interest even though they don't reply.

Take care Sam, and let us know how you are doing :hug:
Kay

Hi Sam, I am 33. I've had PCS since my rollover car accident 5 years ago. I know your struggles and dark thoughts. I'd be happy to talk with you. Feel free to private message me and can discuss treatments/general ways to cope.