Posted by Tony Greenwood on April 22, 1999 at 02:26:32:

In Reply to: Re: Have I or havn't I? posted by Mary on April 21, 1999 at 16:54:36:

Hi:)

>Tony,
> I can relate to some of your experience, as a person with
>diagnosed narcolepsy. I have incredible weakness in grocery
>and other stores--to the point of being incredibly spaced out.

I have to get out as quick as I can.. now stopped going in them alltogether.. As I don't like the weekly shopping trips anyway then no real problem :)

>Occasionally, at night, there is the experience of feeling as though
>there is an electrical shock running through my head,

I can say in all honesty in all these years you are the first person I have found with the same thing.. One doctor told me it was just normal spasm that everyone gets, I couldn't convince him of the terror and the fact that it was a lot bigger than he thought. you can feel them coming but can't stop them.. 2 or 3 together are the worst.

>and my fingers will tingle. It's also impossible to move. My
>husband says he sees or hears nothing. And it feels too real to be a dream.

I am sorry to say this.. But this is the best thing I have heard in year :) This is exactly what I get.. but the tingling can sometimes carry on through to my body... and I think the convulsions are extremities of the tingling.. but like you say.. the person next to me feels or detects absoloutly nothing :(
I can feel myself shaking and trying to make it stop.. but I must not be?

> Have you had a sleep study? They can be helpful, but of course,
>are a synapse of whatever happens only on that particular night, and
>can exclude the entire realm of experiences you have.

I don't wish to sound like a baby here.. But honestly it has taken me over half my life to convince people there was something wrong.. it is difficult sitting in a doctors room in 100% fitness telling him you are ill. I saw speacialist and had scans.. I actualy had one speacialist shout at me and say there was nothing wrong and to go home :( The best I have had is tablets.. but I found the first lot to be worse than the problem.. this has seriously put me off tablets:(

>to accomplishment, but are also ambiguous. This leaves the experience
>open to judgement from well-meaning people who observe little about
>what is really happening to me. Then I have doubts about whether
>any of this really exists. I can fully empathise with your sense of

Exactly my point.. I just about gave up trying to explain my problems as no one seemed able to understand.. and I fully admit that it is difficult for me to explain/describe some of the things that happen and that makes it more iffy I suppose..

Again..you really are the first person I have spoken to that knows. You would not believe the immense feeling of relief..

>doubt. And don't forget how many "variations on a theme" exist
>within the realm of body and brain illnesses. Good luck and respond, if you like.

It then looks like I do have a form of narcolepsy.. On this site there are symptoms of which I have half.. But on the "Do you have it" test I could not answer yes to any question... maybe the test on this site is missleading..I say that in a constructive way and not complaining..

Many many thanks for your response.. for one reason and another I really mean that :))

Cheers..Tony Greenwood
Family Album http://web.ukonline.co.uk/accrington/family/index.html

Follow Ups:

• Re: Have I or havn't I? Mary 4/24/99 (7)
  • Re: Have I or havn't I? Dawn 4/28/99 (0)
  • Re: Have I or havn't I? Tony Greenwood 4/24/99 (5)
    • Re: Have I or havn't I? Emma 4/26/99 (4)
      • Re: Have I or havn't I? Tony Greenwood 4/27/99 (3)
        • Re: Have I or havn't I? Elizabeth 4/27/99 (2)
          • Re: Have I or havn't I? Mary 4/28/99 (1)
            • Re: Have I or havn't I? Elizabeth 4/28/99 (0)

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