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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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dontknowy

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hello, new here and I have lots of questions that I know will never get answered so angery
 
Hi dny, welcome to the forum. :hello:

If you don't ask the questions, they for sure won't get answered. No harm in trying. :)
 
Welcome dontknowy

Ask away! There are lots of well informed folks here just wanting to help out.

Why not start by telling us a little about yourself?
 
Hello Dontknowy- Hit bottom have you?
Really tough place to be, but you are among some very nice folks here.
How can we help?
 
Go for it!.....

Lay it on 'em!.....lots of experience in many different areas here! When you're ready...go for it!
:rock:
 
:hello: DK!

Welcome to CWE!

How are you today?

How's the weather?

Are you looking forward to eating that big
bird? (Thanksgiving Turkey)


:)

 
Ask questions, please. There are others out here (me for example!) who also need answers. With me it isn't so much that I don't want to ask the questions as I just don't know which questions to ask.

So you ask the questions and we will both watch for the answers that the people here will share gleaned from their own personal experience.

Welcome
 
Ask questions, please. There are others out here (me for example!) who also need answers. With me it isn't so much that I don't want to ask the questions as I just don't know which questions to ask.

So you ask the questions and we will both watch for the answers that the people here will share gleaned from their own personal experience.

Welcome

Yeah, Yeah !! As above ^^^ .....there are loads off things I've found out on here cuz other's have asked questions about 'em (and my li'l brain didn't think to ask 'em)

Welcome to the site as well bud.....there are loads off helpful nice people on here. Just talk away :tup:
 
Dontknowy,
Please ask any questions that you may have. No need to be shy, that's why we're here.. to support one another.
Marian
 
:tup:Go ahead and ask away. I've only been here a few days and they all have helped me so much trying to understand what is going on with me. And they WILL make you feel better!!!
 
hey there,

there is no WRONG question here...............so ASK AWAY!!!! we'll answer anything you ask, we promise!!!
 
my ?

my ? is why does everyone keep sudep hush hush even the doctors its ones given right to know right?
 
It is our right to know. But unfortunately for what ever reason they don't tell us the whole story. The EMT's that come to help my daughter at school make me sign a release when I take her into my care that says there are risks if I do that, even death. I sign it knowing that is a risk.

Are there organizations that you have learned about that help in this way? Maybe when the time is right, you can be involved to get the word out. I only learned about it through either a forum or on an epilepsy site. There are risks to so many things. Doctors are only human though. Some have been trained rather well and others obviously not well enough.

How is his wife doing?
 
There isn't any conspiracy to avoid discussing SUDEP IMO. It's somewhat of a catch-22 though - talking about SUDEP is likely to cause stress and anxiety in a patient (or their family), which is likely to increase seizure activity (stress is the #1 trigger for most people).

BTW, the epilepsy resources page lists several non-profit groups who mission is to raise awareness of epilepsy (and SUDEP specifically in some cases).
 
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