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?

[daisey_may]

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. :icon_hug:

Take care,

Daisey_May

[cuddlebug]

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/Psychiatry/narcolepsy/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.

[swee2000]

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.

[NYnewbieRN]

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!

[katie8]

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.

[IzzyKat23]

Oh wow! It is good to know that there are nurses out there who have narcolepsy:yawn: 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:D

[futurebsngrad2010]

WOW!! You all have no idea how good it is to finally find a forum for nurses/nursing students with narcolepsy. I am currently in my 4th Semester of 5 in a BSN program. I was admitted to the program in the Fall of 2006 and before nursing school I was able to do well in my classes by just learning as much as I could in class and "skimming" the material before tests. Well WOW was I in for a wake up call when I started my first semester of nursing school. I did fine in all courses except Patho! I was doing HORRIBLE, I would sit to study and fall asleep after reading a paragraph, I would try to make notecards and take notes in class and not be able to read them afterwards from dozing . My classmates and closest friends just deemed me the "sleepy one". They all just knew I was going to fall asleep in class and they would try their best to get me caught up with notes but it was just too much. I had to sit out a semester until Patho was offered again the next summer. I took courses to get a minor in Psychology in the mean time. In the summer of 2007 I retook Patho and BARELY passed but even then there were not enough spots in 2nd semester for me to continue. So there I was in limbo again, I was able to take Pharmacology and Nursing Research in the Fall of 07 and passed them both. I didn't do great in Pharmacology but I was just thankful to pass. All this time I was still struggling to get by in my courses. I knew I was capable of doing much better but I just did not have the energy or the ability in me to stay awake and do the necessary reading and studying that nursing courses demand. I was able to start my first clinical course in the Spring of 08 and I really struggled just to pass and ended up with a 74 and 75 is passing in nursing school :'(! My roommate at the time was in that group so it was even more devastating to see her go on without me. I just need to mention all this time my family had always just told me I was a very lazy person and just all I wanted to do was nap nap nap. After failing my first clinical course I came home to my family for the summer to wait until the fall of 08 to retake Fundamentals. I was devastated because I tried so hard and I knew in my heart that I was struggling for a reason that was beyond my control. My mother began to notice while riding long distances with me that I was dozing while driving and finally she said maybe we just need to go see our family physician and see what he thinks. I explained to the Dr. that I could not stay awake to read/study/sit in class and take notes etc. My mom explained how terrified she was to see me dozing off behind the wheel. I told him that I suspected that I may have narcolepsy, I also explained how I didnt sleep well at night AT ALL. I told him about how the second I fall asleep I am dreaming AND talking in my sleep, and kicking/punching/acting out my dreams lol. He said YES I definitely think you need a sleep study, he drew labs in the office to check my iron, thyroid levels, check for Lyme Disease, etc. He called then and there while I was in the office and made an appointment with a Neurologist-Sleep Specialist for that next morning. I went to the Neurologist and he scheduled me for a sleep study that afternoon! I had to stay all night to check for sleep apnea/etc, and then they woke me up very early to eat breakfast and then start taking the scheduled "naps". After going home I went back to see the Neurologist the next day and he was speechless. He said I am just baffled by your sleep study results. He said you definitely have full blown narcolepsy (and I have cataplexy), each time they came in the room to tell me to get in bed and go to sleep I was asleep within 2-2 1/2 mins each time and I had dreams in 3 out of 5 naps. I did not have sleep apnea but I have what they call REM-Behavioral Sleep Disorder. Instead of going to sleep and having several hours of non-REM sleep, I go directly into REM sleep. So not only am I excessively sleepy during the daytime but I don't rest well at night because I am dreaming vivid/wild/sad/crazy/scary dreams ALL NIGHT LONG. I disturb anyone that can hear me talking/yelling/cursing/kicking etc in my sleep haha! Its something EVERYONE thinks is hilarious and my boyfriend has taken a few fists to the jaw in the middle of the night lol! But anyway after getting the diagnosis my Dr. also said I probably have some ADHD but its hard to distinguish between the effects of the narcolepsy and ADHD. I first started Provigil which at first seemed to be the miracle medication! However I soon had migraine headaches constantly and became very irritable, emotional, depressed type mood swings. My Dr switched me to a lower dose of Provigil in combination with Ritalin which was "OK" for a month or so and I just didn't feel the provigil was helping at all, soon I realized the Ritalin was just not working either. Now I am on Adderall and nearly at the max dose and I really really STRUGGLE! my dr has mentioned several times trying the xyrem med but I have just been too scared/hesitant to try it. I mean I have a crazy schedule and I am just afraid that I wouldn't be able to get up and going on time in the mornings. ANYWAY after being diagnosed I successfully completed my 2nd semester of nursing in the fall of 08. In the spring of 09 I also successfully completed 3rd semester. This past summer I was to complete this crazy HESI review questions for every item missed on the HESI for adult health. I sat down many times to work on them and just could not stay awake to get anything done. So I decided to take off from work for 2weeks before school and do nothing else but get them done. Well I really really messed up and turned them in late :'(. Because they made us sign a "contract" I was removed from 4th semester classes and told that I would just have to sit out the semester and start in the spring. So here I am in 4th semester classes and doing decent so far but I know I am capable of really kicking butt on these classes because I enjoy them so much (Peds/Community/OB). I am considering going to see my Dr. and trying the xyrem. what do you all think about that? As far as acceptance with the diagnosis of Narcolepsy, the one person in the Faculty I have had to deal with most, she has not sympathized with me AT ALL!! Basically I am just a failure and I know better and she expected better out of me. I feel like I am just this annoying student that has lingered around the nursing program and just will not disappear! However, I refuse to give up. I have the rest of this semester and then we will have the summer off before our final semester this fall. I am soooooo ready to begin my nursing career and show all those ppl that have doubted me and made fun of me and told me that I was just lazy or faking being sleepy ALL THE TIME, I CAN'T WAIT TO SHOW THEM WHAT I AM CAPABLE OF!! I know it has taken my an unbelievably long time to get through nursing school but it will be worth it all in the end. I know i have just went on and on but I could type forever and ask questions from you all but my hands are falling off and I have to get ready for class tomorrow :'(. But if I can get through this nursing program with Narcolepsy then ANYONE CAN!! Any advice/suggestions/encouragement is greatly appreciated :-).

[heartinhospice]

If any of you are still around...I have a question about your right to privacy on this. I have been diagnosed with atypical narcolepsy, and have been on Provigil (only lasts for 5-6 hours vs 15 it should) and when that wears off, I take methylin. I'm a student, and in my 3rd clinical for the LPN program, I asked one of the nurses on the floor where I could store a personal medication, like where they would store imitrex, or insulin...to keep it safe while on the floor. The nurse proceeded to tell my instructor, and my instructor grilled me on what I was on, why I was on it, was my doctor reputable (he's the professor for the medical college of Wisconsin!) and whips out her iphone and demands I spell it out while she looks it up on her Davis Drug Guide. She THEN calls the director of my program at school to tell her all this, and I'm snowballing from there. She intimidated me into telling her, I'm a repeat dean's list student, president of my school's nurse association, tutor, and active volunteer. After that forced disclosure, she failed me on my care plan (I was asked by previous clinical instructor to help my classmates as mine was a perfect score), and failed me in my clinical. I'm devastated, and felt violated from the day she violated my privacy. I was wondering if anyone knows if I have any recourse? I need some advice.

[futurebsngrad2010]

hello! I am absolutely blown away by this! I have made it a point to tell my instructors both in lecture and in clinical, that I have narcolepsy. I want them to know when I begin to slow down or get quiet its because I am getting tired and sleepy. I usually get into slumps before my meds kick in, especially after lunch/supper break. My teachers have proceeded to say, wow what are they giving you to help with it. I just the other day told my clinical instructor about how I started on Provigil and that did nothing, then went to provigil with ritalin, but that didn't help long and then switched to adderrall which I am currently taking. I still am not getting what I need out of my meds and I am almost on the max dose. I guess for me it helps to just come right out and inform my teachers and fellow clinical students that I have narcolepsy so they don't think something wierd if they see me get super sleepy or doze off if I am sitting still. I feel like you need to contact the office of disabilty services at your school. I didn't know how much they could help me with different issues until I met with the director of the ODS office. They are amazing here at my school (I am in a BSN program, finally in my 4th of 5 semesters). Its a very big deal for them to respect your privacy and not punish you for something that is a medically diagnosed disorder and you can't help this!!! I would also speak to the previous clinical instructors that graded you in clinical and on your care plan. Do not give up, I have had the worlds longest experience in a nursing program and I have had to wait my turn and retake classes and butt heads with upper authorities and believe me I do not get any sympathy. Its so hard for me to understand how a nurse that has had so very many years experience and education can dismiss someone's medical diagnosis and make them feel like they are lazy or a failure. So take it from someone that has had many obstacles and road blocks in my coursework and since being diagnosed with Narcolepsy only 1 1/2 yrs ago! Please keep me updated on this and I hope it all works out for you, it may help to get a letter from your physician and actually you will need this for Disability Services if you haven't already signed up with them. I know it has helped me A LOT to have double time on my exams and a reduced distraction environment (since I do have ADHD). There is help out there you just need to do some searching and find out what all is available to you and don't give up!

[BaskiSai]

insomnia is a severe sleeping disorder. i suffered out of that problem very badly. i then heard about hynosis medication. it helped me out to get rid of that issue. now am perfectly alright and able to sleep peacefully.

[mintpal]

Hello fellow narcoleptic s :) hehe

I hope your awake atm, cause I'd like to share with you the medication I am taking. I have been dx with this sleepy condition for roughly 2 years. i went through about 10 years of my life tired and now I am awake! Over the past few years I have been taking the drug Modafinil. It is a drug that acts on blocking REM sleep during waking hours. Unlike ritalin, sorry it doesn't give you the 'high feeling'. Although I havn't tried taking more than the dose I require. I remember the first few months of taking it, I would still dream all night and wake up exhausted. I told my sleep dr this and she said the only way that can be fixed is to give me anti depressants. I said no thank you, and pursued with this meds and would be glad to tell you that on a normal nights sleep, I am no longer GI Jane, saving the planet 85% of the time.

Highly recommended med, with no obvious side effects physically noted... for now. I must warn you that the meds work at it's best when proper sleep hygiene is maintained as well as a few life style changes ( ie. no alcohol, exercise and no coffee after 2 pm :)

Re: my nursing ... also a little terrified as I am on my last year and will be looking for a grad position in a few months. Anyone with suggestions of what area in nursing to go into would be really good.

All the best xx:nurse: