Narcolepsy Forum Posting

Posted by narcmare on November 22, 2004 at 06:10:56:

Sorry this will be long. After struggling with narcolepsy for several years, and not realizing I had it longer then I first new, I have discovered that many ailments that I had attributed to other conditions that may well be due to narcolepsy. I want to know what all the symptoms and side affects of narcolepsy and our drugs truly are. I am going to list all the ailments I have or had to see if any of you have the same symptoms. I have found that many illnesses I either thought were unrelated or I ignored are actually due to narcolepsy itself. I am going to list the symptoms I had before I stared any drugs and then the symptoms of each drug I took. I would appreciate it if everyone who has the same symptoms, or especially if they have others, would please list them here.

Before drugs: Some are obvious some are not so much.
Day time sleepiness
Falling asleep in class and during studying
Hallucinations when falling asleep (more like dreaming as I fall asleep)
Constant dreams
Broken sleep, always waking up in the middle of the night
Hard as hell to get up in the morning.
Difficulty concentrating (diagnosed as having ADD without the hyperactive part so I feel it is the narcolepsy not ADD) I just can’t think clearly. I can only retain so much information when someone talks to me or I read before I feel information overload.
Poor memory: forget to do things, trouble memorizing math formulas, spelling and foreign languages. I am a very poor speller. Thank God for spell check.
My brain feels as if it is in a fog all the time.
When tired my eyes burn terribly. It seems they burn all the time now and I have circles under my eyes.
Depression and mood swings: When I was younger people thought I was depressed all the time. I wasn’t. I was simple tired, and when I wasn’t tired I was fine and happy. Latter on in life I started getting mood swings. I am a very ambitious and positive person but I soon began to be negative and irritable. Some days I was great and positive other days I was irritable and moody. I now find myself being depressed. I don’t know if the narcolepsy caused the depression or if the depression makes the narcolepsy worse or both.

The following may not be attributed to narcolepsy but make it much worse and I am listing everything:

Stomach problems: Hard time eating a lot in one sitting. I get nauseous if I eat too fast or if I eat fatty or processed foods. I would often have to stop eating even though I was still hungry. I am always hungry and eat often yet I am under weight. If I don’t weightlifting I lose weight. I have literally 1% body fat (not fun). I eat very healthy foods
Shakiness: I now think I am developing blood glucose problems and I feel shaky if I don’t eat often.
Sweaty palms with the back of my hand being dry.
Ringing in the ears when everything is silent.

While on Provigil: When I started it was great with no known side affects.
After 3 years I developed:
More irritability
Muscle weakness and shaky hands
Constant urgent need to urinate
Sexual dysfunction: less drive and impotency.
More Nausea and difficult eating then before.
When I stopped taking it the symptoms either disappeared or lessoned greatly

I am now on Xyrum with no known side affects so far other then:
a sour stomach when I wake up and difficulty eating breakfast
The ringing in the ears is now louder and one ear is worse then the other. I don’t know if it is due to xyrum or not.
The Xyrum helps greatly with sleep at night but I still am very sleepy during the day.

If you have any of these symptoms or more that you feel may or may not be associate with narcolepsy please state them hear. The human body is very complicated and I feel this disease has more symptoms then just the obvious daytime sleepiness that have been overlooked.
Thank you for taking the time to read and to post your side affects.

Follow Ups:

Copyright ©1995-2005 Sleepnet.com., All rights reserved