Narcolepsy Support Group

I am currently seeing a sleep doctor for Narcolepsy. Based on my sleep study results, the fact that I sleep so much and have sleep paralysis, the doctor feels that I most likely have it.

I feel like the sleep problem is a symptom of a bigger problem. I feel exhausted, not sleepy. I don't fall asleep during meetings, while driving, etc. I am just plain exhausted and can barely function. It seems to be worse after I eat. I have an appointment with a gastroenterologist in a few weeks, but I wanted to see if anyone has any insight. I have already gotten the basic blood work panel (blood sugar, rbc, etc.); it came back normal. My Van Willebrand factor is abnormal but I don't think that would pertain to the problem. I was also tested for Celiac, but that surprisingly came back normal.

Any help anyone can provide would be appreciated.

If you have something else, than I should get checked also. I am the exact same way. I am always exhausted, but not sleepy. I don't fall asleep at work or driving and I do not fall asleep easily at night, but I am always tired. Some people call me lazy, but I just don't have the energy I used to. I have had every test ran on me from Neuro to Gastro and beyond. Everything comes back normal. Even after 12 hours of sleep I am still exhausted and could sleep more. I also become moody at times. I have not found the cause so I just assume that it is part of the problem of Narcolepsy. I also have cataplexy which tends to make me collapse in very stressful and intense situations. However, they are few and far between and I know ahead of time that they will occur.

If you find out something else, please let me know as I too suffer with exhaustion.

have you been tested for something as simple as MONO?

Post edited by: sleepySheri, at: 03/10/2009 20:52

I am curious what your MSLT sleep test said. Did you enter REM sleep in any of your naps during this MSLT study? [img]

Singer - I will definately let you know. Like you, I can be moody. I have characteristics of Bipolar II. Have you had an MRI of the brain? I have a small cyst in my brain so a Neuro is next on my list after the Gastro.

Sheri - I had mono 6 or 7 years ago. Although I had fatigue problems before that point, after mono my energy levels sunk even further. I don't think I have been tested lately unless that shows up on a cbc.

golfnawake -My doctor was "weird" about giving me detailed results from the sleep study. I expected a full print-off. I think he didn't want me to analyze it because he knows how I like to research. I was just told that I did drop on to REM sleep quickly. I remember dreaming in all 5 naps. I typically do fall right into a dream. I'm not sure if you can only dream in REM? I think it's a difference of opinion.

Thanks for the responses.

My daughter has narcolepsy (she is 26). We didn't find out until after she had 2 car wrecks. Her neurologist explained to us that because of the interruption in normal sleep patterns the body is unable to rejuvinate itself, including muscle tissue, nerve tissue, etc. This can lead to Chronic Fatigue Syndrome, Acute Chronic Depression, Fibromyalgia, etc. Please whatever you do don't let your Dr.s just blow you off. If you don't understand what they are telling you or you need more information demand that they answer your questions or find another Dr. that will. You are not "crazy, lazy", or any of the many things that ignorant people like to label others that have a debilitating, misunderstood disease. This disease is what you have not who you are. Keep your head held high and call on me when ever you want.

Auriel

Float25: I have had two or three MRIs done. I had a closed head injury when I was 18. I had a 2x4 fall on my head and knock me out. I had a CT and they said I was fine. Then several years later when these symptoms were not going away, my doctor sent me to get a MRI. The test showed a small atrophy that in intense situations could block blood flow to my brain causing me to collapse. Two years later I had sleep studies to determine narcolepsy.

Auriel, your post caught my eye because I have everything you listed amongst other things am also now being tested for Narcolepsy. I just cannot keep my eyes open during the day and at times just drop out cold on the floor. It has been happeneing for some time now. I am going for a sleep study on the 28th.

FLoat25---the things u have listed have been everyday things i have experienced with narcolepsy. i used to fall asleep driving and i fall asleep at school. after i eat i always fall asleep. it is normal for everybody to experience some amount of tiredness after eating because ur body uses its energy to digest the food we eat. so, i really think what u are experiencing is just narcolepsy.