Narcolepsy Support Group

Generally speaking, I think my symptoms are mild. I don't think I've ever experienced cataplexy or hallucinations (although I do experience sleep paralysis once every couple months). The daytime sleepiness is bad, but I've never actually fallen asleep at an inappropriate time (even when I want to fall asleep, I often can't). Usually, from the time I wake up I feel like I have a "cloud" in my head, like there's something pressing down on my brain and from behind my eyes, but not in a painful way (I know this is a weird way to describe my symptoms, but it's the first description that always comes to mind). I can usually will my way through it, but it's exhausting and emotionally draining. In situations where I know I need to assert myself (which, as a young professional, are numerous), I usually elect to give up and seek excuses instead. Typically, I will begin to feel more awake at night, and if I ever have anything important or even different to do the following day, I inevitably get little to no sleep the night before (I haven't asked my doctor about this, but I don't quite understand this apparent contradiction in my symptoms (can insomnia and narcolepsy occur simultaneously?)).

I encourage you to check out my profile for a detailed overview of my experience with narcolepsy so far and the various remedies I've tried and am currently trying (from Nuvigil to natural remedies to the Zeo). I hope that I can be a benefit to you all by providing detailed descriptions of what does and doesn't work for me. I encourage questions and comments, both positive and negative. I think a respectful, free flow of information will ultimately be what is most beneficial for all of us.

Thanks for your time,

Frank

Diagnosis would only be able to come from a blood test, sleep study and MSLT. The blood test alone is not accurate enough, there are times they have come up negative when the person has actually been positive for Narcolepsy so you wouldnt want to go by that alone. A dr would never give you a diagnosis on symptoms alone because the symptoms can mimic so many other illnesses.

Missa, I do hope your new dr will refer you to a Neuro or sleep spec who will order a Sleep Study and MSLT so you can at least get some answers.

My Narcolepsy is severe, I have days where I fall asleep all throughout the day at random times talking, eating, cooking or cleaning. I can be sitting or standing it doesnt matter there is no warning. I have been hurt many times due to this crappy disorder, thankfully the Nuvigil has been controlling it for the most part but I have days where its out of control. I have not driven since Jan 08. You will meet alot of wonderful people here that truly understand, keep posting. Stacey

No I cant say I have ever tried that one, I will have to look it up I have never heard of it. Do you take it?