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Comment by RANDY SHERMAN on March 27, 2013 at 3:17am

Hi Anxst
I too have trouble w/ insomina . my reasons are different . I stopped fighting it and used it to my advantage. I have 2 kids who are gong to school. So , I just stay up until I get me kids up and off to school. Then I go to bed. I blame my insominia on the early versions of EEG's . Many times when I was an adolesant , my NEURO. order my mom to keep me up for 24 hrs. It' wasn't easy. A lot of times my mom wwould have to nudge me to keep me awake. We would meet a couple of families and friends to accompany us. We would go to out for breakfast , bowling and anything that would keep me up until it was time for my appoint. By the time of the appoint. I would fall asleep. in the Dr.'s office during the EEG. Now days I would always be up thru the early mornings before I go to bed.

Comment by Anxst on March 27, 2013 at 12:22am

Sleep has been an issue for me off and on for years. Most recently I have had long bouts of insomnia (not sleeping at all 2-3 nights/week) other times in the past I have had bouts of insomnia that I think were caused by my fear of sleeping. I often have horrible recurrent nightmares and occassional night terrors, and I think I was afraid to go to sleep and have these. Thankfully, my sleep has been better these past few weeks, and oh what a difference it makes. I hope you are sleeping well soon.

Comment by RANDY SHERMAN on March 25, 2013 at 3:50am

Hi everyone I just found out a disturbing tidbit .
The NIH (NATIONAL INSTITUTES OF HEALTH) RESEARCH FUNDING OF 2013 .

per patient estimated fundings

AIDS $3419.00
STD $1805.00
HEART ATTACK $1790.00
CANCER (all forms ) $671.00
SMOKER $150.OO
ALCOHOLIC $3.16
EPILEPSY $0.82
----------
It's very sad to see how much fund we get thru Epilepsy .
Grant it This is in the U.S. , but if it 's like this here , I wonder how bad the fundings are in other countries .

Comment by Filippo Biondo on March 24, 2013 at 4:42am

Hey Monsoon,

check it on out!

SLEEP PLAYS A BIG ROLE

• Posted by Filippo Biondo on March 10, 2013 at 9:54pm in Epilepsy - Lets Chat About It !

Take Care There Buddy

Get your sleep & try to let the least

bother, annoy or disturb ya, i know it's

darn well hard sometimes but ya gotta!

& sometimes it's best when ya gotta go

to bed & get that extra rest & sleep ya need!

Comment by Monsoon on March 3, 2013 at 6:43pm

Casey, we all hate the seizures - I can understand... I am beyond surgery . Just have to keep taking my meds . Tell me about it my friend - life is tough. Epilepsy is not always the same for everyone and sharing our different experiences helps so much.

Comment by Monsoon on March 3, 2013 at 6:35pm

ejl1558 I love your poem ...we all go through very low moments  as well. I hope you will also become a member of my group called EPILEPSY-LETS TALK ABOUT IT!!! Hope you like it. You have come very far so keep walking - the power lies within you !!!

Comment by ejl1558 on March 3, 2013 at 3:14pm

My best way to chat about this is from this poem:

This battle started long ago
It was 1961
Attacks were not as bad back then
But I wasn't having fun

There were times when I got scared
Why? I did not know
I'd need someone who I could ask
To hold me, don't let go

This happened way too often
And it lasted way too long
My parents had me see someone
To find out what was wrong

They checked me out the best they could
Then said, "Don't be alarmed
This could be epilepsy
But it's just a minor form"

Maybe it was minor at the start
But soon I went downhill
They started lasting twice as long
And getting stronger still

They sent me to neurologists
Because they had the skills
To run the tests I needed
And prescribe me different pills

My high school years I won't forget
It had good news and bad
I had no seizures those four years
But lost two treasures I had

In December of my junior year
My sister passed away
Then senior year was just as bad
Mom got her call one day

My attitude got really bad
The seizures then returned
Life can be heaven sometimes hell
Right now I'm getting burned

I'm starting over so it seems
When seizures start again
So now I'm looking twice as hard
How to put this to an end

There were times I asked myself
"Is life really worth living?
Suicide, now there's a thought
But would God be forgiving?"

A co-worker then gave me hope
The article she brought
Gave me the name of someone who
God sent...that's what I thought

I called him up and asked for help
He set me up for tests
We met, discussed the test results
He said what he suggests

He added pills I hadn't taken
Another thing I'd learn
He'd build up people's confidence
By showing his concern

It took a while but then I saw
I was on a streak again
No seizures for a long, long time
It looked real good but then

I questioned what God did to me
My father passed away
My seizures started up again
They could be back to stay

But then one night I got a call
It was my mother-in-law
She asked me if the TV's on
And told me what she saw

A woman's problem was the same
As the one that bothered me
She's tired of her seizures
So she's having surgery

I watched the test, the surgery
I was taking mental notes
I knew that it was what I want
I now need family votes

I won their votes...the doctor's too
And now the tests would come
To make me have some seizures
So they'd know where they came from

It took six days but finally
The testing was completed
So then I found that I could get
The surgery I needed

My first prayer answered...now let's try
To answer number two
I want a second chance at life
Let's see what we can do

My confidence would stay with me
As I had my operation
With all the prayers being said for me
I knew my destination

When I came to, I saw my wife
My mother-in-law, my son
My second prayer was answered
And the battle had been won

Recovery was half the time
They said that I would need
I was going home so I could start
The life I want to lead

As we drove home, I found I stared
At my son and at my wife
And then I realized what I got
A second chance at life

 

Epilepsy can make your life horrible for a long time but it's best to stay hopeful.

 

Ed

Comment by Monsoon on March 3, 2013 at 7:01am

All is not too well...had a full horrible seizure last night....my face, neck and head hurt - but somehow we get the strength to be alive. Welcome to the Group Filippo...write in whenever you want share your thoughts. We are all in the same situation here !!!

Comment by Filippo Biondo on March 1, 2013 at 2:59pm

Whats up all! just joined in & wanted to 

say hello & hope all is going well for you!

To begin with about my tale of epilepsy tales!

 grand mal seizures epilepsy started at 45, so

to so the least that's a little later in life, so?

I really feel for those who have had it most or all

of their lives since birth, childhood or teenage years!

I was lucky up until 45, so i at least was fortunate 

to taste what most of life is like, before the horrible

scourge of Grand mal seizure Epilepsy grabbed me &

my life by the throat in a death grip that still shadows

over me & you all out there too! Well again Hello & I Hope

"ALL STAYS WELL WITH ALL"!

Comment by Monsoon on January 25, 2013 at 7:16pm

Did you know the people that are the strongest are usually the most sensitive? Did you know the people who exhibit the most kindness are the first to get mistreated? Did you know the one who takes care of others all the time are usually the ones who need it the most? Did you know the 3 hardest things to say are I love you, I'm sorry, and Help me. Sometimes just because a person looks happy, you have to look past their smile and see how much pain they may be in.

    To all our friends who are going through some issues right now--Let's start an intention avalanche. We all need positive intentions right now. If we don't see your name, we'll understand. May we ask our friends wherever you might be, to kindly copy and paste this status for one hour to give a moment of support to all those who have family problems, health struggles, job issues, worries of any kind and just need to know that someone cares. Do it for all of us, for nobody is immune. We hope to see this on the walls of all my friends just for moral support. We know some will!! We did it for a friend and you can too. You have to copy & paste this one, no share button, because kindness is a effort given from your heart not the press of a button.   

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