by PNP2004

I am curious if there is anyone else like me out there. As some background: I was diagnosed with Narcolepsy in 2003. At the time I had been an RN for 4 years and a PNP for 2 years. Looking back it's so easy to see that I was suffering from this disease but at the time there was always some other reason that I thought I was tired. When my job as a PNP went from working day shift to 24 hour shifts... well, all hell broke loose. Some of my co-workers had a hard time with those kind of hours. I on the other hand completely deconstructed - every symptoms I had got magnified about 10 times. It was pretty obvious to me and everyone around me that something was very wrong. I had a sit down with my boss to discuss things and we agreed something was wrong, I needed to get checked out by a doctor and I needed off 24 hour shifts until we could figure out what was wrong and then see what we needed to do from there.

Long story short - I got diagnosed and my doctor explained that he could help me - this was the best news I had had in ages. I was obviously shaken and scared to have a diagnosis of narcolepsy/cataplexy which I knew couldn't be cured. At the time though I was very focused on "he can help me" part and so I went back to my boss and gave her the news. I was so naive in believeing that she really just wanted to help me. 6 months later - after enduring the most humiliating, demeaning and nasty treatment she could manage - I was put out.

I won't go into all the details here. I mostly wanted to know how other people have managed and in what jobs. Has anyone successfully fought off a hostile administrator? What was your experience like with co-workers? (in my case - it was a mixed bag and most people, even when they were nice to my face - I found out later on that they believed I was faking or that I was unfit to do my job). What ideas do you have for being successful in the long run?

Re: Sleep Disorder/Narcolepsy

I know it's been a month since you had originally posted.

I am so sorry that you are going through this. It is hard enough to be newly diagnosed with something that has affected you so much at work! And then to go back and not even receive the support you thought you would have makes it even harder.

I hope that you are doing well and something has been worked out between you, the hospital administration and your co-workers. What added stress that you do not need on top of everything else!

I hope you hang in there and keep us posted about what is happening.

Take care,
Daisey_May

Re: Sleep Disorder/Narcolepsy

It is disappointing to me how people in the medical profession can be so unsympathetic. Especially to another nurse who has a problem like narcolepsy. For those who do not know what narcolepsy is please visit http://med.stanford.edu/school/Psych.../symptoms.html
This disorder can be treated with medication to prevent sleepiness such as Provigil. It is not easy to obtain a diagnosis of narcolepsy only because they don't know exactly what causes it. Most of the dx is based on the symptoms along with a comprehensive sleep test that lasts for about 16+hours. There is now an identifiable gene and if the patient has the narcolepsy gene along with abnormal sleep study they are dx with narcolepsy. As you can see the pt. goes through a lot of testing. I say that if this woman has been dx with narcolepsy than she has narcolepsy.
I support you PNP2004 and so glad that you have found out what is going on with you. Now that you know what is wrong you can be tx with medication to help you have a life without falling asleep all the time. What I can say is this...Keep your head up high, know that people are judgmental and possibly uneducated about the disorder. Remain confident and in control. Possibly seek legal advice about your situation. Always have something to look forward to and just move forward. Draw out the positive of this traumatizing experience. Don't let others drag you down and forget about what everyone else may say/think.

Re: Sleep Disorder/Narcolepsy

Hi, PNP2004. I came across your post and couldn't believe what I was reading. You and I are like clones of each other!!! I am also a nurse with narcolepsy. I didn't find out until the summer of 2005...and that's after 9 years of being my own patient advocate & trying to convince the doctors something was truly wrong. All my problems started after I got sick with mono in July, '96. Since then, I have never been the same. Constantly tired, wanting to sleep all the time, memory issues.

During the 9 years I sought answers, I went to 3 different family physicians and a neurologist. The physicians all did the same thing every time I complained: they ordered lab tests to check my thyroid & iron levels. Guess what? The results always came back WNL!!! Each time they ordered those tests, I had to remind the docs that those levels had already been tested and ruled out as the cause. But who was I? One doctor even checked for Lyme disease, rheumatoid arthritis, lupus, MS, etc. Everything was WNL. So then they said it was depression. Yeah, maybe I was depressed....because no one would listen to me or believe that something else could be going on!!! I agreed to try Prozac, thinking maybe they're right even though, in my heart-of-hearts, I knew they weren't. And guess what? The Prozac did nothing. Finally I saw a neurologist who ordered a sleep study. This was back in 2002 or 2003. Unfortunately my insurance at the time wouldn't pay for the study (because they did not feel there was enough medical necessity) and I couldn't afford the out-of-pocket cost. So I continued on struggling. It wasn't until after I got married in 2005 and switched insurances that I finally got the answer I knew was out there. Instead of going back to the family physicians or neurologist, I went to a sleep disorder specialist who also ordered for me to have the sleep studies. Man, what a relief when the insurance company approved them this time! I believe this doctor was thinking sleep apnea or RLS. But when we read the results of the studies, he was just as shocked & surprised as me when it said I had full-blown narcolepsy. Finally, after 9 years of knowing something was wrong but not having the answers or people who believed me, the weight was lifted off my shoulders. I was put on stimulant medication right away, but have not had much luck thus far. Provigil did nothing and Ritalin had min-mod, inconsistent results. Some days it worked well, other days you couldn’t even tell I had taken it. So now I’m trying med #3 and crossing my fingers this one will work.

One of the worst parts of this ordeal: I actually had to drop out of nursing school in 2004 when I was in the middle of 2nd semester of the RN program. I was falling asleep during lectures, falling asleep at home trying to study, my grades took a dive, and I struggled to retain anything I read, heard, did, etc. It was very hard. But even now with the diagnosis and being on medication, I still haven't been able to finish an RN program yet. On the flip side, I did go back to school in January 2006 and successfully completed the LPN program, as well as passed my Board exam. But, as much as I love being an LPN, it wasn’t my dream. And because of my narcolepsy and how bad it can get, I have had to accept that I may never be an RN.

Anyways, thanks for letting me share my story. Good luck to you and remember: there are others who understand and relate to what you're going thru. I wouldn't wish narcolepsy on anybody. And, as much as people can say "How can you be so tired?" or "You're just being lazy"...if only they could spend a day in our shoes. Then they might think twice before making another comment. Heck, what I would give just to feel "normal" again.

Re: Sleep Disorder/Narcolepsy

Hello all,

I know that it's been almost a year and a half since this thread was started but I was wondering how my fellow narcoleptics are doing. I am a new graduate, nursing being my second career. My story is very similar to swee2000's in that I searched for an answer for years and was consistently dismissed. In my case, I actually WAS hypothyroid and chronically anemic (related to celiac disease that was also undiagnosed until adulthood), but treating these conditions did nothing noticeable to alleviate the devastating exhaustion and dysfunction. And several of my doctors and I chased the depression demons for years as well, even after I became convinced that narcolepsy was the real beast that was making my every living moment excruciating. I was again dismissed and told that this was impossible, as this was "something that overweight middle aged men get" (HELLO?? Sleep apnea??). Not only was I dismissed by every healthcare provider I spoke to, but I was always being blamed for my own problems by people around me trying to dispense well-meaning advice ("you eat too many carbs", "you should exercise more", "maybe you should take easier classes, or maybe college isn't for you", etc, etc). I was also accused of being held back by anxiety issues, no matter how much I insisted that my academic difficulties were a more direct result of my inability to stay fully awake for more than a minute at a time, ever... Anyway, I was finally evaluated and diagnosed at the age of 27, fifteen years after the onset of my miseries. I began treatment with Xyrem in July of 2004 and quite suddenly I was no longer the exhausted, chronically ill, struggling train wreck that I'd been since puberty. By the way, my depression ("depression"?) went away within a few days! So I ran down to my community college and signed up to start taking my prerequisite courses for nursing and well.... here I am. Not that it was easy. But it was simply downright impossible prior to my treatment. So for those of you who are still struggling and who have not tried Xyrem, I seriously recommend giving it a try. It makes so much more sense to help your body and mind heal by enabling more restful sleep than it does to just throw stimulants at the symptoms, at least that's what has worked best for me. However, I don't mean to preach, as I know that there is no-size-fits-all approach to managing narcolepsy. Anyway, for those of you who have been in nursing for a few years, I would love to hear back from you if you have any suggestions or warnings about what has or has not worked, or any other advice you might have, especially in terms of what types of nursing positions I should perhaps try to avoid. (Aside from the obvious problem of the near-impossibility of finding a day shift right out of school...) I know that I need to be prepared for an especially brutal reality shock. So anything you care to share, no matter how potentially discouraging is welcome. Thank you!

Re: Sleep Disorder/Narcolepsy

holy crap now I am super nervous. I just graduated nursing school this past May (2009) and just passed my state boards in July. After no one could figure out what was wrong with me this past January I went to a sleep Dr and was diagnosed with sleep apnea and narcolepsy, which is weird considering I'm a young (24), skinny, female, who doesn't snore. And I never just "fall" asleep, I'm just always tired. Anyways, I'm on stimulants and a CPAP. I was about to join the Air Force as a nurse but they permenanty disqualified me because of these sleep disorders eventhough I had Dr notes saying I am completely controlled with meds and CPAP. I was so upset because this is what I wanted to do. Finally I realized that I can't fight the government and I might as well start applying. Not only am I having a problem finding jobs because I am a new grad, now I'm worried that no one will hire me because of my sleep disorders. Do I have to tell them on my interview? I know I have to tell them I will fail the urine test for amphetamines but when they ask why I will have to tell them I have a Dr excuse b/c I have narcolepsy. aaaaahhhh! I feel like I have no chance. I don't know what to say about that during an interview. I also am not the biggest fan of amphetamines and my Dr wants to try zyrem which I am very hesitant about. Also if I have to work night shift and alternating shifts I know its gonna screw up my schedule with meds (and zyrem if I choose to try it) but there is no way I am going to say that I can't work night shifts. omg I am never gonna get a job. Someone please give me some good encouragement.

Re: Sleep Disorder/Narcolepsy

Oh wow! It is good to know that there are nurses out there who have narcolepsy I was dx a few years ago and when I was going through chronic migraine issues that could not be controlled. Finally after my neurologist had a sleep study done (day and night) he told me I had narcolepsy. He put me on Xyrem and I thought it was a miracle until I lost a year of my life to depression and almost ended it all (I am not nor have I ever been a depressed person, I am the happiest, most positive, upbeat person I or my family knows!!!) Luckily my family and Mister noticed my distinct behavior change and drastic weight loss (100lbs) and I switched neurologists and medications. My new neurologist confirmed I have narcolepsy. I must admit I now no longer sleep like I did with the Xyrem but I am back to my old self (Happy and tired!) I have a great doc now who has me on Ritalin (not a fan of it but ya gotta do what ya gotta do) and tries to get me to have proper sleep hygiene...lol, good luck to that w/full time school and elder care! My primary care physcian told me I am on a very low dose so far so that made me feel better. But since I only get REM sleep anyway I usually just forgo sleep and live off of my medication, caffeine and sheer determination, until I collapse. I have learned to time my medications to every morning when I wake up (I try to get at least 3-4hrs of "sleep" every 24) and when I really need it, right before lectures and such which are late in the afternoon but this changes each semester. I assume I will have to do this with my shifts once I graduate and get a job. Hardly anyone knows I have narcolepsy because I am so scared of what people will say. I am so lucky that I do not have cataplexy! I have had classes where people who do not know I have this will go off about it and say the most absurd things about it and I just roll my eyes. I would still never mention it because I did not want it to hurt my chances of getting into nursing school and I am sure I would be discriminated against at work someday. Even though I have this, I manage to stomp circles around my friends who have nothing wrong with them...other than lazy I guess. Maybe this is because I have the right meds now (which I know I will have to change eventually, nature of the disorder) or it could be I am just that obstinate and I refuse to lie down, literally. It gives me great hope to know there are other narco-nurses out there though It also good to know to keep my trap shut on the job in the future
@ Katie8
I am not sure but you should not have to disclose why you are on what meds you are on...Yes you will have to tell the lab tech, but you should not have to tell the interview person, that you will pop for amphetamines, and bring a note from your doc, that says he/she prescribe it and that's all or the bottle and that should be good. You do not need to tell them why you take what. As long as they know you did not buy it off some guys jacket on the corner So many people take so many different things now, sky's the limit really with prescribing and off label usages...If you deal directly with the lab it should not even have anything to do with the person you are interviewing with. If you have further questions you may want to ask your doctor or pharmacist. Good luck to you