Sleep Disorder/Narcolepsy

[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?

[firewater]

Hi,I can relate to all your posts: I am an RN who was diagnosed with Narcolepsy and RLS 9 yrs ago. I am 54 yrs old and fortunately,even though I was tired a lot and slept more than others most of my adult life,it did not interfere with my life or work until the last 7+ yrs. By then I already had a fair amount of work experience under my belt so it was not hard to get a job as a case manager in a hospital (no longer do hands on nursing). The meds have been a mixed bag: sometimes they work.sometimes they don't.I spend a lot of time off sleeping and have had to change meds/doses thru the years. Because I am run down my immune system has suffered and I get sick if I don't get enough rest.

I just want to let others know that with the right meds you CAN work as a nurse in most fields you want...as long as you stay away from long hours and switching shifts. Even though I no longer do hands on nursing (a choice,didn't have to stop) I find it more and more difficult to work full time. My current job doesn't offer part time so I work 5 days/wk. Plus I can't afford to cut back anyway right now. Here's what's helped me:

1) I don't do mornings well so swing shift always worked better for me.

2) Never tell your supervisor you have narcolepsy. It will affect how you are treated and if you get certain jobs.

If you need a UA to get hired just bring your Rx bottles with you...if it's legal it should not even get into your record (we have HIPAA rights too!)

3) Work part time if you CAN afford it.

4) Don't get exhausted,you'll get sick.

5) Keep your appt's with your Sleep Specialist (or whoever) because you may need a track record someday if it gets bad enough that you can't work and need SSI or a note saying you can't work full time,etc.

I finally got called in over my use of sick time 6 months ago because I've learned that when I'm really exhausted I need to call in for a day here and there.I certainly can't blame the hospital,it's their policy.I'm in a Union Shop fortunately. I filed for FMLA and had my doctor fill out the forms saying that I have narcolepsy and may need to take time off from time to time (I don't abuse it). This went to the HR dept. and my boss never saw it...all she knows is that it was approved so my job is protected.

Good luck to you and let's hope for a cure one of these days!!!!!!

[futurebsngrad2010]

I came across two articles this morning and thought you might find my story interesting! I have attached the links to the two articles and I emailed the National Sleep Foundation telling my story in hopes it may help someone else someday, I am also pasting it here so maybe it will help someone else! I have already posted on this thread several months ago but a lot has changed since then so sorry for the long post .

I am a 23 year old female, currently a senior nursing student, diagnosed with Narcolepsy w/Cataplexy and REM behavioral sleep disorder in May 2008. Since I was little I have had crazy, wild, scary, vivid dreams. There was definitely one episode of sleep walking that I am sure of, I walked from my bedroom on one end of the house to the other end into my parents room, looked into their bathroom and walked back to my room to go to bed. My parents saw the entire thing. I frequently woke up as a child screaming because I "saw a spider on my bed", but now that I have learned more about sleep disorders I truly think there was never a spider it was just a hallucination because my parents would always come in and never could find whatever it was I thought I saw. For as long as I can remember I have talked in my sleep, cried, yelled, kicked, punched, etc. For the past 5-6 years the sleep talking and violence in my sleep has worsened and especially the hallucinating as I am falling asleep (which happens soon after my head hits the pillow. For my sleep study for narcolepsy my Neurologist/sleep specialist was dumbfounded as he went over my sleep study results with me. During the night study I moved around, talked, sat up in bed and yelled out, and the confusing part was my pattern of sleep cycles. I go straight into REM sleep as soon as I go to bed. Literally my boyfriend can tell when I have fallen asleep (I jerk pretty hard the moment I fall asleep) then moments later I begin to talk, depending on the dream I have cried my eyes out dreaming of something really sad, screamed/cursed/woke up angry and mad at my boyfriend and accused him in the middle of the night for whatever i thought he had done to make me mad. I have nearly broken several of my friends and my mom's noses, punched my poor dog in my sleep, texted my roommate in my sleep swearing up and down that someone was beating on our front door, I could go on and on with the craziness of my nighttime sleep. On to the daytime...for many many years I was deamed to be "just another Lazy (last name) Kid" (everyone jokes that our family is sleepy ppl, just couldnt put my last name on here lol) or just a lazy person, or the "napper". I never thought I could have narcolepsy. It took me going off to college, starting the nursing program, doing so horrible in the first class that actually REQUIRES tons and tons of reading and studying to pass (pathophysiology), having to withdraw from the class and sit out the next semester of nursing to wait until patho was offered again in the summer, then I BARELY passed the 2nd time but they didn't have enough spots for me to continue with my class, I was allowed to take pharmocology that fall and FINALLY I was able to start 2nd semester (first semester with clinicals) in the spring and struggled through and failed with a 74 (75 is passing), next I came home for the summer and it didn't take long for my mom to realize something else was going on that was really causing me to struggle with school, it wasnt until we were driving to the nearest mall (an hour drive) and my mom screamed out "(MYNAME)!! you have been driving for the past few miles ASLEEP! We went to the family Dr the next day and he referred me to a neurologist/sleep specialist, i had an appt the next day. I saw the specialist and scheduled a sleep study for that night. Sure enough I have narcolepsy w/cataplexy (dreamed in 3 out of 5 naps, and was asleep in 1-2 mins. each time) and REM behavioral sleep disorder. I have tried provigil/provigil & ritalin/ritalin LA and IR/adderall XR and IR/back to provigil and ritalin/back to adderall XR and IR/adderall IR twice a day/and now I am on adderrall IR twice a day plus I just started Xyrem two weeks ago. FINALLY I am starting to see amazing improvements. Since being diagnosed with narcolepsy the nighttime behaviors have only gotten worse. With Xyrem I do not move a muscle, I sleep FINALLY and my body rests! I woke up after the first night and the first thing I couldn't wait to tell my mom was I DON'T REMEMBER A SINGLE DREAM! She slept with me the first two nights to make sure I did ok and she said once she meds kicked in I didnt move or say a word! After 9 days on xyrem treatment my epworth score went from a 16 before starting xyrem, to 9 on the 9th day! Back to my nursing progress, sorry this is so long, after being diagnosed in May 2008 I started back to nursing school and had to retake the 2nd semester (its a 5 semester program), It was amazing the information that I would have sworn they didn't cover in class the first time but I heard it the 2nd time because I was AWAKE! I improved quite a bit but still struggled to sit and read to study etc. I was just happy to be able to learn in the classroom and be more* awake during exams. In the spring of 2009 I was in the 3rd semester of nursing and did ok but because the meds really weren't doing much for me anymore I struggled. Finally someone told me at the end of the semester that I was eligible for testing accomodations and I had double time to take the final exams for that semester. That helped a lot because I had time to get sleepy but recover from it and continue with my exam instead of dozing then waking up with 10 mins left and 30 questions left to answer!! At this point our school decided to implement a new policy, at the end of each semester we take a HESI exam for each clinical course we have that semester. Because so many seniors weren't passing the FINAL HESI exit exam after 3 trys they had to take action and figure out a way to fix the problem. Well they decided to require us to answer 14steps/questions on each topic for each question we missed (so I missed 23 questions on my MedSurg HESI therefore I had to answer 14 questions on the topic for every missed question, all written BY HAND). You can begin to see the struggle a person with narcolepsy might have doing this. Granted I tried to work on it at the beginning of the summer but quit because I was falling asleep EVERYTIME I sat down to work on it. I took off work two weeks before school started back (I have worked every semester since being in college) and I ended up not being finished in time and turned it in one day late. I was removed from my registered courses the day before the semester started because in the contract/policy we signed it states zero tolerance policy it must be turned in two days before class starts. Anyways...I had to take classes to finish my minor and be full time. I started back in nursing for 4th semester in the Spring of 2010. I was so excited because it was finally the classes I was interested in (Peds, OB), I did ok but I am pretty upset because I know that I could have done excellent if I didn't have NARCOLEPSY :'(. I was finally able to get my request for retro-active medical withdrawal approved from the Spring 08 semester that I failed by 1 point and was diagnosed to narcolepsy, so at least that isn't on my transcript and I got my tuition back. Anyway, so this summer I have had 51 questions missed total from all 3 classes and 14questions to answer for each. I had planned to try xyrem this summer and hopefully get my sleep improved and be ready to start the fall semester as awake as possible . My Dr didn't get the xyrem set up until July so for the entire month of June my narcolepsy daytime sleepiness and nighttime crazy dreams/hallucinations upon falling asleep and waking all seemed to spiral out of control. I couldn't stay awake for anything. I would get up take my dog out, eat breakfast, go back to bed and sleep til 12 or 1 and get up eat lunch, stay awake for a few hrs, take a nap for a few hours, then awake for a few, then back to sleep for the night. I got in this awful cycle and couldn't break it. Obviously I coudn't get any work done, worked for 3 weeks on one topic (1 set of 14steps/questions)! I ended up going to the Dr with my mom and was put on antidepressant because I was very emotional and really didn't have any desire to get out of the house all I wanted to do was sleep. I was ill with everyone because all I heard when I was awake was "this is rediculous, you know what happened last time, you have got to do your 14 steps, etc etc", I had all I could handle (my family doesn't really fully understand the sleep disorders or wanna listen to me explain them) so I finally just broke down and had a melt down. I started the antidepressants and he adjusted my adderall to 30mg IR twice a day and made sure the xyrem was being set up. I started xyrem July 19th and in 9 days I did 8 sets of 14 steps! As the daytime sleepiness is improving I am picking up the pace, I am able to sit and work on this for 10+ straight hours at a time. I am still pretty sleepy the first couple hours I am awake but nothing like before, and my parents sure do appreciate the added effect of xyrem making me stop talking/hallucinating/screaming/crying during the night :). I read this article relating REM behavioral disorder (my nighttime sleep disorder) to the later development of Parkinson's disease or possibly Alzheimer's/dementia etc. I also read where most of the patients with REM behavioral disorder are men in their 40s and 50s, I remember my Dr. saying something about my sleep study when he was explaining how stunned he was after looking at the results because I have the problems that usually only 40-50 yr old men have not to mention the crazy backwards odd patterns of my sleep cycles. Also, I feel confident, and my mom agrees, that my paternal grandfather has narcolepsy and pretty extreme cataplexy. He takes naps all day and talks in his sleep during his naps, and anytime he is upset/sad/something makes him angry/if you say something that he absolutely doesn't agree with, he has a cataplexy attack. I didn't realize it until I was diagnosed and realized that my symptoms were actually cataplexy then I realized that my papaw has done this for as long as I can remember. Also on my fathers side, my dad's sister most likely has narcolepsy and sleep apnea, her doctor thinks so and wanted to schedule a sleep study but she put it off til' who knows when. Also, my maternal grandmother is the most classic case of narcolepsy EVER, she won't go do the sleep study until she has her bladder surgery because she is afraid she will be up going to the bathroom all night haha! I wish so bad that she would have the study done, but without a doubt she has narcolepsy and possibly sleep apnea. I say all this to show I likely have family history of sleep disorders on both sides of my family. No one that I know of has Parkinson's but we do have a history of Alzheimer's. My mom's grandfather had alzheimer's and dementia, and my mom's dad is in the early stages of alzheimer's but wouldn't take his medicine :'(. I tell you my whole life story in hopes that it may help someone else. I am interested in the research being done on REM behavioral sleep disorder and hope that more will be done for narcolepsy. I know from personal experiences/trials/struggles that even the most educated medical professionals and nursing leaders/educators do not know much at all about sleep disorders nor do they sympathize with students who deal with them. I hope to finish my 5th and final semester of nursing school in December 10' and plan to get involved in promoting research and attention for narcolepsy and other sleep disorders. I know that the study of sleep is very new and I hope and pray that more will be discovered to help people suffering from these disorders. My hope is to educate others, especially school teachers about narcolepsy and sleep disorders and what signs to look for because if my teachers had been aware and instead of scolding me and embarrassing me for sleeping in class, they could have recommended help for me long before I graduated and started this 6 year long struggle to graduate college. I refuse to give up though! I have read on many sleep forums on narcolepsy and I have seen the really sad stories from people that really live miserable lives. These people can't even function, can't work, can't get out of the house, lose relationships, etc. I think of all that and I feel very proud to have overcome everything I have been through so far. I have come to far to give up now. I hope someone sees this, actually reads it, and maybe it will inspire new studies or help someone else that is dealing with the same problems, especially someone who hasn't found the Dr. willing to take them seriously. Narcolepsy is just as devastating and miserable as any other chronic medical diagnosis and medical professionals, especially nurses/educators, need to be better educated on sleep disorders. I know for nursing students in my program we had one lecture on sleep and comfort and maybe spent 2-3 minutes on Narcolepsy! Everytime I had to sit down with the Director and ball my eyes out because I had hit another "roadblock" in the program, she made me feel like the biggest failure, like I was such a disappointment and especially after being diagnosed with narcolepsy she for sure rolled her eyes and dismissed me. She does not remotely understand what I have dealt with, I think she is just sick of dealing with me. I can not wait until the day I walk across that stage and graduate. I will prove to her (and everyone else) that I do deserve to be a nurse despite her lack support and confidence in me. Thank you all for reading my story and sharing yours because I think it really helps to hear from other nurses/nursing students/ppl with narcolepsy and know that I am not alone. Together we can help each other and those struggling to make it through school or their own daily lives dealing with these horrible sleep disorders!

Here are the links to the two articles I read this morning! :)

http://health.msn.com/health-topics/alzheimers-disease/articlepage.aspx?cp-documentid=100261632

http://www.sleepfoundation.org/article/sleep-related-problems/rem-behavior-disorder-and-sleep

[Little Sleeper]

Hi ladies,

It is nice to see that so many others have had the same struggles and yet still chose nursing.

I am a Canadian RN and was fortunate to go to a school where they were more than accommodating. I began work last spring and after a brief doctors note my schedule was arranged from day/night 12hr rotations to all days.

I have recently accepted a job up north - and did not inform my manager until i'd arrived. The questions she asked were vague in the interview and I responded yes when asked... "can you work 12 hr shifts?" because I have been working 12hr shifts for over the past year. I know she was most likely referring to day/night shifts but I did not divulge any medical information up front (because I do not think it is required).

When I arrived this woman was less than pleased - and in her defense I can completely understand how this may have taken her off guard. After reviewing the schedule and taking into consideration the incredibly different hours of day light up north I am thinking taking on this new schedule and working day/and nights with space in between is manageable. It is only one year and I really want this job (it is an amazing experience).

Do any of you work day/night 12's and how does it work for you?!

I just want some thoughts on shift work. Thanks!

[Little Sleeper]

i meant to write choose, but I am not sure how to edit after posting...

[FLnurseLCJ]

It always nice to hear that you are not alone. I was diagnosed with narcolepsy/cataplexy in 2001 at 17, and i have been a bsn since 2006. My mother (who also has narcolepsy) said that she knew by age 3 i had it too, as i would wake up and begin to tell her elaborate stories of things i had done while i was asleep. My sleeping was a running a joke in high school, i actually caried a blanket around with me. As most others have said-laziness was a word that popped up often, as did jokes of narcolepsy. However after several cataplexy episodes, a diagnosis was clear. My biggest issue then and still is to this day is not the EDS (they have meds for that) but the miseable nights. Dreaming non stop. Vivid, scare, constant. I know im falling asleep because i start dreaming. i also have sleep paralysis at time which is terrifying itself. As far as nursing school, it was hard, but i managed. I did fall asleep a times in class. I have tried many different meds of the years. I never disclosed it to anyone. I began working at a hospital, 12 hour shifts, after graduation. at the time i was taking provigil, i have since switched to nuvigil. I again did not tell anyone, however within a few months, after being free of cataplexy for many years, while in a pts room with another nurse, i fell right over. And this was no casual colapse, oh no, It was a production (forchuntely i can laugh about this now). I cracked my forhead right open. blood on the floor. rushed down to ER for catscan and stitches. A total mess. At this point a confession was in order, and i told the managers. And they we honestly very ok with it, but wanted to make sure i was on the correct medication. Several years later a night time nurse manager position came open and i applied. They money was great and i really thought i could do it. I thought all had been forgotten oof my incident years earlier, but it hadnt. They managers were very hesitant to give it to me-all because of narcolepsy. However after lots of persistance, i was awarded the position. And they were right-i could not do it. I couldnt stay awake at work, i slept through days at home. I was depressed because my entire life seemed to revolve around sleep....a problem that i thought i had done my best to overcome! No money was worth my misery and after a year i steped down and went back to working 3 12 hour days. I take nuvigil in the day, and i find that i stay so busy at work, i dont haev a lot of time to think about being tired. Sleep is still a struggle for me. im afraid it always will be. On the nights before i go to work i take restoril, and simply deal with the other nights. i have tried every sleep medication there is, and this one does best for me. I wish the best to everyother nurse who is dealing with these problems....nursing hours are extremly difficult for those dealing with narcolepsy but i have found my way to adapt and hope that all of you can too:)

[Lilu26]

To Swee2000 -

(I thought I could reply to just you, but I'm new to this site and still trying to figure out how it works.) I saw what you wrote in response to the originial post, that was almost 5 years ago so I don't know if you ever come to this website anymore to read new messages, but, I thought I'd give it a shot in case you do.

I was very stuck by your post as I have had a similar experience in my life. I got Mono back in 2004 and have never been the same person since - constantly tired & wanting to sleep all the time. I've also had my thyroid levels and blood checked, and everything came back wnl. Finally I went to have a sleep study done and the Dr. Diagnosed me with idiopathic hypersomnia...??? Which basically means - I don't know why, but you need a lot of sleep. After my diagnosis he prescribed Provigil, which I tried and it did not seem to help. Then he offerred me Adderall, which as you know as it is a stimulant and could probably help, but I don't really like thinking about the long term side effects, nor do I want to get hooked on it, so I refused it.

While this mysterious diagnosis of Idiopathic hypersomnia is not exactly the same thing as being diagnosed with narcolepsy, after reading about yours and other peoples stories about narcolepsy I'm beginning to wonder if that is what I actually have!?? I go in and out of periods of complete exhaustion where I feel like I just want to sleep ALL THE TIME, its hard to function on less than 9-10 hours of sleep. On days when I don't get my 9- 10 hours of sleep I feel like I could fall asleep standing/driving, etc. There are some sporadic days when I feel just fine, but those are rare. Majority of days I am tired. Many people, including family, think I am just lazy. But I know that it is more than just that. I'm not sure what to do about my chronic fatigue/hypersomnia/whatever you want to call it. I just graduated & got my bachelors in nursing and need to start looking for a job, but I'm scared. Do I tell my new boss about my possible sleep disorder? I don't want to be scheduled to work 12 hours because I fear that I cannot handle it with my condition.

Anyway, I’m interested in hearing how your nursing career is going, and if you have any suggestions as to what might be a good nursingfield to look into for someone who is experiencing similar life difficulties. Thanks!