Calling new members

If you are a new member, please sign in and say, “Hi,” introduce yourself, and share your story. We are a group of fellow narcolepsy sufferers, who are all in pursuit of improving our lives and better controlling our disease.

Start your forum experience here.

I’m not new, but I’ve been absent for a bit so I’ll give this a go…

I am Kristin and I am blessed enough to be one of the moderators here in the group (I cone and go sometimes due to other health complications). My experience with Narcolepsy has been anything but predictable. Lots of periods of relentless sleep attacks then periods where it’s not quite so severe. I differ from a lot of automatic behaviors (micro sleeps) though, which can make day to day life a little hard. I also have cataplexy, but it is not too bad right now.
I do occasionally have episodes of unctrolled sleep attacks where there is literally no warning. This paired with the mocrosleeps and my petite mal epilepsy has revoked my ability to drive indefinitely. I manage quite well though so its OK. Really, I fond having Marcolepsy to be kind of interesting and although of xam be frustrating; it is kind of nice to get out of thongs sometimes because I am “too tired”. Just saying :slight_smile:

Hi. I'm Kris, I'm 25, and this is my first time ever writing in a forum. I was hesitant to join because I haven't been diagnosed with narcolepsy and am only in the testing process. For as long as I can remember I've always been more tired than those around me. I can sleep for 12+ hours easily and still nap during the day. Unfortunately having a full time job doesn't allow for this and I've become increasing tired over the years. I went through a hard time and saw a psychiatrist a few years back. I was diagnosed with depression/mood disorder/adhd and put on a variety of medication cocktails. Over the past year, I've grown increasingly tired and went to my PCP to get his opinion. He recommended I get off my medications since it would be hard to find what was causing my fatigue when one of the medications could be to blame. I didn't like my psychiatrist at the time and felt like she was unnecessarily overmedicating me and chose to follow his advice and stop my medications and not go back to her. It was hard, but I did it. In the process, it was discovered that I was vitamin D deficient so I spent 3 months taking large weekly doses to get to a "functional" level. Once I achieved this level, nothing changed as far as my energy like my PCP thought it would. I saw an endocrinologist at his request and everything was fine, so I was then referred to a neurologist. I had an EEG come back fine and a sleep study come back negative for sleep apnea, but it showed that I slept the majority of the night but never went into stages 3/4 of NREM sleep (86% was spent in stage 2). (He didn't tell me how quickly i went into REM) He scheduled an MLST bc he thinks it might be narcolepsy/hypersomnolence of some sort. I do have sleep paralysis but have never had cataplexy. I'm having to delay my next sleep study bc I'm moving for a new job. If I had been with any other company for the past year, I would have gotten fired because of how many times I've missed work or left early because of how tired I've been. I'm really nervous to start a new job because of my inability to figure out exactly what is wrong as of yet. The past year has been miserable and I feel like I'm losing out on life. I'm so tired all the time and people just tell me I'm lazy/depressed. I truly do not believe I am tired because of depression. I am more so depressed because I am tired. Yes, there is a difference, I have been genuinely depressed before. When I am able to go to work, I feel like I can no longer mentally function. It's like my motivation just isn't here anymore because I'm so tired. Has anyone had signs of narcolepsy w/out cataplexy or had a sleep study come back with no delta sleep? I'm currently taking Provigil but it's proven to be pretty ineffective for me. It does prevent me from falling asleep, but I still just feel completely exhausted all day. I never sleep well at night and have done a lot of things to improve my sleep hygiene (set bed time, no tv/computer in bedroom, no alcohol/caffeine, etc) but nothing seems to help.