Story/Vent - Feedback Appreciated
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Story/Vent - Feedback Appreciated

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Posted by yurgh on October 31, 2009 at 04:07:16:

Hey, I'm a 33y old man and I've been struggling a with keeping awake, loss of muscle control when agitated or happy and recently some strange sensations before falling asleep.

I've been to three doctors (general practicians) starting at age 26-27, after failure to stay awake at work. I would often struggle to stay awake - not being able to focus on anything but staying awake at all. I would have trouble focusing my eyes, getting worse and worse until just falling asleep. After sleeping for anywhere from 5 min to an hour I would be perfectly clear again. When sleeping I would wake very easily, and when I woke my mouth was very dry and my eyes had some very red areas (looked like a roadmap :P). Often I would have cravings for food/cola/coffe etc.

This would happen irregulary at first, but have graduly increased to a couple of times a day.

Caffein, btw, doesn't do anything for me.

I told my doctor this and did a lot of bloodtests, all being ok - so he decided my problems were weight-related. I'm a bit chubby, but not obese. I lost a lot of weight but it didnt help, so he ordered more tests. Oxygen, heartrhythm etc (EKG) - but all were dandy.

I had hear of narcolepsy but as another poster here mentioned, I thought that meant instantly falling asleep with no warning etc (cut and clean), and I don't have that problem.

The problems didn't go away. I developed a kind of depression, feeling guilty because I couldn't pull my weight. I could lie awake for an hour before managing to get up because I was afraid of how it would go today.

I started to play WoW a LOT, but had the same problems there - falling asleep while playing but at least noone would see me. Eventually quit that job - thinking maybe a fresh start would help.

But it didn't help.
I went to the doctor again, and told about the insane need for sleep during the day. He did some more tests (all fine, surprise surprise) and concluded that I needed to excercise and sleep more.

Having gained a lot of weight from the previous depressing year, I got on top of the excercise and dieting to get down to a more acceptable level.
Due to the cravings I thought that kinda made sense (hindsight: however I was getting heavier DUE to the problems I had!) I thought I had diabetes or insuline resistance (?) or food allergies. All tested and negative.

My symptoms didn't change at all, in fact at that time (around 28-29) I started getting paralysis when I experienced something real funny, surprising or was angry. (hightned emotions, not like just a bit funny etc). I told the doc that, and asked if this could be Multipple Sklerosis or something nerve-related. He poked me with a needle around parts of my face and said it wasn't. He hinted to me being a hypocondriac, and told me to stop reading about symptoms on the internet because I would feel I got everything I read.

The rag-doll feeling got worse in the following years. It started out by limp knee/arms, but now I get a full facial-paralysis (jaw dropping, eyes skewing (? cross-eyed), ears moving (yes, that looks odd...), can't speak (if i try to it's mostly gibberish). I feel all of it in details because my "input" senses are fine. I also get this when I'm tired but to a lesser degree, mostly just arms falling down for a second or less.

So I switched doctors. I told him about my symptoms and said I was worried, especially for the daytime sleepyness and paralysis, and I worried I might have MS/Diabetes/Food-allergies. I spent a lot of money on removing amalgam from my teeth, fearing metal poisoning (mercury). Doesn't seem to help.

My new (and current) doctor did the same needle poke test to my face, which of course did show nothing abnormal. He said I shouldn't worry about the paralysis (which I obviously didn't have at that exact time). However he was interested in my sleepyness. Did a lot of blood tests, and tadaa: I have high colesterol (5.5) Back to the diet and excercise...

Btw; it's not just on work I can't manage to stay awake. When boarding a plane or a bus, I fall asleep almost instantly. My girlfriend hates travelling with me because she get no company during the trip. (She said it's because of eating flour btw, so I had to stop that too). When driving a car, I often have to stop and sleep because I sense I can't focus on the driving. I've fell asleep in meetings, at the movies, during visit to friends and family. While entertaining visitors. I fell asleep in the dentist chair while she was drilling (Impressive huh?! I bit the drill too.) - three or four times on different visits.

In the last months I've been getting sick emotions just before sleeping. I feel people looking at me, scary/evil presence of something, hearing strange sounds or incoherent talking. I know this isn't real, and it stops once I tell myself there is noone around and then I sleep. (Never told anyone about that because "it feels crazy")

I usually sleep around 7-8 hours and don't feel exhausted in the morning, altough sometimes I'm unable to get up. (Don't know if it's from depression or not, but my body won't do what I want it to) The sleepyness sets in usually at around 10-12pm and varies after that. Sometimes I'm able to postpone it by doing pushups, going to the bathroom(!) or running up and down 8 flights of stairs etc. But it don't go away until i doze off.

After discussing on a weight-loss forum, someone sent me a link to a video showing people having cataplexy seizures on youtube - and I cried. It was almost like seeing myself, or rather how I thought I might look when I got those paralysis :\ I dug abit on google and wikipedia and found that cataplexy was often found in people with narcolepsy.

I know I can't diagnose myself, but I have never seen a medical description that fit me so perfectly as Narcolepsy.

I'm afraid to take my new findings to my doctor because I fear he will think it's weight related, I'm being hypocondric or that I'm just plain lying. What can I do? I'm thinking of focusing on how I feel rather than present him with what I think is the solution (feedback very appreciated!!!), so he might think it's narcolepsy on his own, but I fear he don't know. I think I need neurology/sleep-testing.

(Also I realize a forum can't give me a diagnose too, ofc!)

I am sorry this was really long, but I had to vent it. And as I said, feedback is appreciated - just be as frank and direct as you can. I'm norwegian and medical english is a bit hard, so I might spell a bit bad...

Btw; I also read there was some special blood test that could yield positive/negative on narcolepsy? Which one?

Best regards to you all! -Y

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