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Anyone know anything???

Posted by Sleepy-head on November 22, 2002 at 08:22:53:

It seems a bit unfair to mention that I do try to pass on as much help as I can to you all, especially as I can't be certain if you find it a lot of garbage, or whatever...
I try to help
I have a big problem and hope you'll make a big effort to read this and see if you can help me
PLEEEZZzzze

I’ve been in treated at a specialised sleep clinic for the past 3 years, and not only am I getting desperate that I seem to be getting worse. I guess I could cope with that, but all along the Doctors never really seem to understand what I’m saying. I had one of my C attacks in the waiting area of the clinic a couple of weeks ago. I wanted to ask your advice at the time, but the whole thing upset me so much that I haven’t been able to write about it.

It was really awful, I noticed it coming, and there was a really aggressive glass table in front of me, I was desperate to avoid crashing onto it, so I ended up flopped over the armrests of the chair. Everyone came running, and they decided they better put me to bed.

I was already really distressed because of the table and I hate being moved at the best of times, so I was getting more and more frantic, as I tried to make them understand that they should leave me alone, but I couldn’t talk.
Once I was in bed, Three Doctors, were standing around, asking my Psychologist and each other what it could be. Once I could talk, I told them they better “study me” whilst they had the chance.
The Sleep Neurologist would have loved to put me on an EEG, but it would have taken over ½ hour to prepare. This state can last up to 3 hours if no-ones around to massage me awake, but it seemed unlikely that it would last under those circumstances, so he checked out all my reflexes etc, I did jerk a little when he hammered my knees, but when I scratched the soles of my feet, I told him it hurt, but couldn’t move away.

I had an appointment with him the next week, and he told me he had seen similar (wow) but he didn’t think it was Cataplexy, and didn’t know how to treat it. This is why I’m finally going to another Clinic.

I’m wondering if someone out there knows anything about this or any of the following symptoms.

CATAPLEXY, SLEEP PARALYSIS??
An emotion is supposed to trigger a loss of muscle control for a brief while. I do flop when I get mad, but mostly there isn’t an apparent reason.
As to the time, anything under 20 mins, is an exception, it can last for a few hours.
It seems like whenever I relax, the parts of my body that aren’t in use, just go to sleep
So whilst I write this, my legs are sleeping away happily on the desk. I know my feet are cold, but with a lot of concentration and effort, I can just twitch the toe on one foot!
Ok the way out might be to never sit down and relax, but that doesn’t work for a whole lot of reasons. Mainly I have back ache if I stand too long, and if I don’t let my body drift off to sleep comfortably, I fall over anyhow.

AUTOMATIC BEHAVIOUR
Is supposed to mean one does familiar or boring tasks, without realising one is doing them.
You may remember I didn’t realise I’d sold my house and bought various household appliances. Does anyone else do really unusual things without knowing what they’re doing???

I haven’t found a description of how long these Blackouts normally last for, but mine can be well over an hour, and I know I attended a 2 day course with a Danish Rider, I just wish I knew what happened after the first morning!
Does anyone lose a couple of hours or even days occasionally?


You might have noticed I tend to read up a lot, so
The first thing I learnt about N, were the typical symptoms.
The second thing was that PWN hardly ever have typical symptoms
OK great

Information on N is pretty limited, so if one has a symptom, one automatically assumes that that is what was meant in the scanty description. Logically I figured that all my symptoms were normal. Now I’ve realised that they certainly don’t seem to be.

Over the past year, I assumed that my lack of luck in turning up closer descriptions of my symptoms was due to my incompetence on the Internet, but even I won’t buy that excuse any longer.

I’m going to the new Clinic early next year, I’m optimistic that they’ll know more.
In the mean time, any input you all have will be much appreciated.

Thanx

Sleepy-head

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