Hi Deb,
I have been seeing your posts and can empathise. I live in the uk and go to
National hospital for neurology and neuro surgery queens square which is THE
place to go for treatment in the UK!!!
I have been ep for 25 years and as a nurse it was very hard to get a grip
with.
I have found that the only way to do it is to study the subject, learn as
much as you can and regain control. Knowledge is control!
Drs are the experts but you know how you feel. You know how the drugs make
you feel and you know how you are after a sz. Work with them, tell them how
it is good bad and awful. Ask the facts about VNS - magnet they should have
access to the video which explains the principles of it and the drawbacks.
It works because at the first sign of a seizure, you or those with you can
pass the magnet over you and it will in most cases stop them.
Drawbacks should and will be discussed, not everyone is appropriate for it.
Make a list of what you need to know when you see the Drs and then you can
get answers to the priority ones. Work with them and use them as a
resource. Avoid triggers such as tiredness, alcohol, stress, excitement!!
What ever yours is.
You will get there, but don't ever lose sight of the main aim which is
control and freedom from sz. I have them every 6-8 weeks and have done for
the last 15 years. Refused surgery, pills make me feel spaced out and like
a zombie, but I still want to feel well and carry on and on and on just in
case the next new pill will work.
Take care and good luck!
M
_____
From: epilepsy@yahoogroup
Of Kelly Porter
Sent: 05 May 2010 19:15
To: epilepsy@yahoogroup
Subject: Re: [epilepsy] eliminating no possibility
Deb,
Don't give up. One of the things that you need to do is go prepared,
ask all the questions you have, and you will find a doctor who will
listen. You will find that doc. Don't ever feel like you are "tired of
them" because you need them more then they need you right now. So many
times I hear people say "I feel like they are using me" when in reality
we NEED THEM. What other alternative do we have? To give up and do
nothing. What we need to do though is use them for everything they are
worth and that means trying to know more about this disease then they
do, going prepared for every appointment, and asking every question you
need answered. Use them for what they are intended for fully, make sure
you are satisfied with the information you have gotten before you
leave. Don't ever feel like you are leaving questioning what is
happening next--that means you are not controlling your disease or your
care. You need to feel in control. keep asking until you are satisfied
and make sure you have all the information you need so YOU can make the
decisions in your care--never let them make you feel like they are
telling you what to do because you feel uninformed.
kelly
Deb few wrote:
> I wouldnt want the magnet either, because I wouldnt know when my seizures
are coming. I did however have all my levels checked, including my
magnesium, I will know sometime today or tomorrow.
> They did more at the Er last night. Im spacing out though today and I have
never done that. It is a weird feeling.
> I go to my Doctor today at 3, so I will see what he says. Im tired of
these DOCTOS!
> Deb from texas
>
>
>
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