--- In epilepsy@yahoogroup
>
> 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
> >
> >
> >
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
No comments:
Post a Comment