New member Kris666 is looking for advice

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.

Hi Kris. I have narcolepsy without cataplexy and it took 10 years for me to be diagnosed. You are describing the exact same symptoms as me. My sleep studies showed that I never reached remember sleep. I think I only reached stage 2 as well. But I did have sleep apnea which seemed to me to delay my narcolepsy diagnosis. I thought I was going to get some relief and restful sleep when I got the cpap machine but nope. I complained on and off for years and the 2nd MSLT test I took showed 1 incident of falling into REM sleep within minutes. 2 incidents is a definite narcolepsy diagnosis, but with my symptoms over the years and the 1 incident I was said to have narcolepsy. So I believe you can still have it without the MSLT showing it…because I had the same extreme sleepiness throughout the years. I too seen a psych dr. And was put on depression meds, one that put 70 lbs on me in 1 year. It felt like a zombie and had bad anxiety and depression from lack of sleep everyday. At diagnosis, I was put on nuvigil and it kept my eyes open but did not relieve the exhaustion. After 1 year I was more depressed and switched to adderrall. It seemed like the best thing but after time the side effects were bothersome. After 2nd year I’m now on vyvanse and it was working good but now had to up my dose. But it does sound like you may have narcolepsy. I hope you find out what it is:)

I also struggled to stay awake at work. The constant fatigue and sleep attacks feel as if a person was to take a sleeping pill or NY Quill and told that they are not allowed to fall asleep. The constant struggle to stay awake is torture. And now I have the hardest time waking up and getting to work on time. I am on fmla now so I can’t lose my job.

I also have some memory issues and get tongue tied when speaking, especially when trying to tell a story or explain something. It’s frustrating but I just try to deal the best I can.

I can definitely relate to not being able to wake up. I haven’t gotten to work on time since literally September. Today was my last full day at my current job and I’m supposed to get there at 8am and didn’t even get there until 3pm. Thank you for sharing your story, it’s nice to see other people who are experiencing the same thing as me. I’ve taken adderall in the past for about a year before it became ineffective. When it worked, it was good though. Have you ever tried xyrem or is there a reason you haven’t? Specifically since you don’t get into deep sleep?

Hi! My narcolepsy is atypical, meaning my sleep study did not show me going into rem sleep but I have all the symptoms of narcolepsy. I’m constantly fatigued, before I got put on the right meds I use to have hallucinations, I still have the brain fog when I’m fatigued my memory is horrible but you have to fight through it because you can’t let it control your life and yes it’s easier said then done, I have good days and bad days but I have to keep fighting
for my husband and my kids so I just want u to know that once you get your diagnosis and they find the meds that are right for you it does get a little better. Keep your head up.

What a great bit of writing Ashley; gave me goose bumps in fact as well as smiles. I am learning so much from you lovely people.
With best wishes for a happy and healthy New Year

My best Christmas present was the half hour my daughter spent showing me what Pinterest is and how it works (I’m in my 70s so this stuff has to be explained to me). It’s huge fun and I wish I had more time to play with it. I love your board and I’ll be looking there when I’m stuck for what to post on our LWN FB page;)
Nel. Off to bed in London UK.

Hi Kris. You sound a lot like me. It took years for me to believe I had narcolepsy because my coping mechanisms had become so engrained, but now I know that all the struggle to stay awake isn't normal. Yes, it feels like you're missing out on life and that's a feeling I hate. I have depression too, and must be medicated for it because it recurs and can be severe. Yes, narcolepsy and the struggles that come along with it can become depressing, but my sleep doctor said depression doesn't necessarily occur with narcolepsy. I have depression, period, independent of the narcolepsy. It's okay to be medicated for that, too, if you need to be.

Sure you can have narcolepsy without cataplexy. I thought I had narcolepsy w/o cataplexy, but my knees can slightly buckle if I'm standing during a sleep attack, and when I laugh while standing I stop, bend over, and slap my hands right above both my knees. So my chart says I "admit" to this. :) Some people have severe cataplexy.

Your long history of symptoms sounds like narcolepsy, but I'm so glad you're doing a good job investigating all possibilities. I still wonder why I'm so tired. Narcoleptics can have endocrine trouble, too, or depression. You're gathering very important information and I hope treatment is right around the corner for you! We'll support you.

Hi Kris, and Ashley, too, Happy New Year!

Kris, have you settled in after moving? It takes awhile! Good luck with everything you are doing right now :), keep in touch and let us know how the sleep test turns out. Thinking about you!