Nurses with Narcolepsy

mrsmac0710 · Jul 30, 2014

Real Narcolepsy symptoms are unknown to most people. Unless you have other effects along with your narcolepsy, such as cataplexy, you should be fine if you're rested and taking your medication. Which is what you would really say about any other health condition. I have narcolepsy and I have never needed naps throughout my 12 hour shift. I feel if you are receiving the correct treatment that is good for you, you wouldn't feel the need to, and I would get all of that sorted before I started working. To get the diagnosis of narcolepsy you simply had to have a complaint of sleepiness for a period of time, and do a sleep study that shows that you go into Rem sleep within a couple of minutes of falling to sleep. I have never disclosed my narcolepsy to my employer, but that's only because I have it under control. I also feel that if I was to disclose it that I could possibly not get hired. I work in a CVICU and I know if I'm sleepy and tired that I can't take care of my patients, so if I don't get a good night's sleep I'm calling in.

My advice is to stay in control of your health, it's no different than a diabetic nurse, or a nurse with heart issues, or depression, any one with a medical issue can have it fog judgment and impair your thinking. So take care of yourself, take your medications and be responsible for your patients. I would not recommend night shifts. I do better staying engaged with my patients and stay moving, than if I were to have a lot of down time. Staying busy will keep you alert. Hope this helps!

1KoolRN · Oct 11, 2014

Thank you mrsmac0710 ~

Sorry it's been a while since you posted this and responding. Your advice is very much cherished and I couldn't agree with you more.

I was released by my sleep doc to return to work about 2 months ago, and finally feel I'm able to confidently and safely care for myself and my patients (YaY). It's been a long journey (to say the least), but I have learned more about this condition, sleep hygiene, and so many other aspects that are connected to sleep and overall health ~ and there are A LOT of vital elements that plays a role in order to efficiently get an adequate amount of quality sleep!

I've been working with my neurologist to get my Vit. D level up (has been super low throughout my life...) in combination with my Vit. B levels. She's based her practice on having the right amount of all 8 B's and D3 in order to function at best ~ and not just for those with sleep disorders, but for ALL kinds of medical conditions the majority of the population deals with every day!

I'm fascinated with the connection these levels have on feeling good (like we should, naturally) and our health ~ it has shined a whole new light on how I will care for not only myself, but for my patients, my family and my belief in obtaining optimal health and healing! What a blessing this whole experience has been and that I'm able to share this knowledge with the world!

Thank you so much, again, for your insights and wisdom :)

ccobye · Mar 15, 2015

I realize it's been a year since your post, but I wanted to make a few comments and share my story.

First, I want to refer you to the National Narcolepsy Foundation (Google it), they are an excellent source for articles, advice, research.

It has been my experience that you need to be careful who you tell. Some understand and some do not. Personally, I would not tell an employer or anyone else unless it became necessary to do so.

My story....

I was diagnosed with narcolepsy in 1990 at the age of 15. I exhibited all 5 symptoms of narcolepsy. The cataplexy was particularly bad during puberty. I took Vivactil for the cataplexy and it helped greatly. Those symptoms have diminished through the years. I now mainly struggle with the daytime sleepiness. I take Provigil and I'm closer to the pre-narcolepsy me than ever (it's what I consider normal).

Currently, I'm 40 yrs old and in my last semester of nursing school. I'm having trouble in my clinicals because the days are so long. I don't dare sit down or eat a big lunch for fear of falling asleep. Don't know how to handle working as a floor nurse.

erinj823 · Oct 19, 2015

Im so glad I found a forum for nurses like me with narcolepsy. :laugh: I have had excessive daytime sleepiness my whole life. I would constantly be late to school because I sleep through my alarm, fall alseep in class etc. during high school. In nursing school, I would fall asleep studying and have to read the same paragraph over and over again. I found it easier to pay attention by engaging my brain with highlighting, recopying notes, making powerpoints and note cards, and attending studdy groups. I managed to graduate with all As and Bs and get my ADN and RN in 08. I lost a desk job before for falling asleep at my desk. Ive been in a minor fender bender bc i had a microsleep at the wheel. After that, I worked as a nursery nurse for 5 years, 8 hr shifts, then 12s. I did nights which weren't bad till I had my daughter. Then I was so exhausted when I feel asleep that I didn't even hear her crying in the next room. So I went to days which was fine. I would drink 3 or 4 cups of coffee a day to stay awake while charting. I also have type 1 diabetes so whenever I would complain about excessive sleepiness my drs would just say it's the diabetes or hypothyroid or vitamin D deficiency or just being a working mother. My diabetes is under control and even treating with synthroid and vit D there was no change and my lab work is fine. So I told my psychiatrist I thought I had innatentive ADD and she recommended a sleep study to rule out sleep apnea. Of course, it wasn't apnea so the neurologist reccommended MSLT and it turned out I have narcolepsy. That was 10 months ago. Around the same time I started a demanding NICU job. I started Xyrem but because of my unpredictable work schedule and hours, I couldn't get on a consistent work routine. I am aslo taking Vyvanse and provigil during the day to stay alert. I asked my boss if I could just work weekends for a few weeks to help develop a better sleep routine. Even doing this, one sunday I had a horrible nights sleep bc my daughter woke up crying (teething) and only got 6 hrs broken up. I felt fine, but apparently had an episode of "brain fog" where I had a lapse in judgement that COULD have caused a patient harm, but didn't. My boss said they have to investigate and will let me know what happens. I am scared to death of making a mistake that will harm someone, so I don't trust myself anymore. I don't want to loose my job because I enjoy working there. I am working really hard to get the narcolepsy under control. I exercise, set alarms to go to bed and take the xyrem and there has been noticeable improvement. I now get 8 hrs 6/7 days a week, but life happens and there's always those days that are beyond your control. I'm wondering if I need to step away from critical care all together? I can't afford to not work. Can they legally discipline me for mistakes if it is a medical issue? I have been very open with my boss about my condition. I can't get FMLA yet because I've only been working there 10 months. Even with a good nights sleep and medications I don't feel like I react as quickly as I should. Not sure what to do at this point. Any advice would be appreciated.

AnnieBopannie · Jan 12, 2016

I know I'm posting a bit late, but I am a new nurse (started 10 months ago) and have recently discovered that I might have narcolepsy. My main system is cataplexy and looking back, I probably had it a few years ago---neck giving out and buckling of the knees--after telling a funny joke, but had no idea that was a system of something until my friend, who is a PA, told me the official medical term for that a few months ago. Working at a hospital, I have researched narcolepsy a lot and finally saw a general neurologist, who confirmed my suspicions. I am now waiting to seeing a sleep neurologist and to do my sleep study, but I wasn't able to get an appointment until april (4 months away!). I am currently a new nurse and we do rotating am/pm 12-hour shifts. I worry that I won't be able to wait to tell my employer before I have an official diagnosis, so I recently disclosed it to her. I am starting to realize the lifestyle changes that I will need to make and therefore have asked to go down to 36 hours (from 40) and to be permanent AM shift. So far, I haven't been able to talk to anyone who has narcolepsy (let along fellow RNs!). I would appreciate any advice/suggestions you have going forward. Thank so much!

heyarnold · Mar 14, 2018

I have been a nurse for 22 years and have had narcolepsy my whole life. It was officially diagnosed 5 years ago, along with severe obstructed sleep apnea. I take my meds, follow a strict sleeping and napping schedule, eat healthy and still have my down days. I will have to argue with one of the statements from before, it will not always be controlled just by taking your meds correctly or following any one strict plan. Narcolepsy like any other chronic condition, is unpredictable in it's characteristics. You have an idea of what your body and mind will do in certain circumstances, but there are no promises. Everyone reacts differently and has varying stages of the condition that may not work with just taking meds and being rested. Some days I would be able to make it through a 12 hour shift, some days I would need 1 nap, and other days I wouldn't be able to drag my body out of bed even if it was on fire. Your best bet is to disclose your condition to your managers and co-workers. Narcolepsy is more than just sleep. Lack of sleep causes all kinds of other issues that you and they need to be aware of, brain fog, loss of memory, slow response, grouchiness, depression, poor judgement, fine motor skills, gross motor skills, etc... There are so many variables. I know that if I have a very busy weekend or am around a lot of people that I will have a down day to make up for it. And some days, I can be the most rested person and still have that really fatigued feeling like my body and arms are trapped in heavy water. Understand your body, how it responds to Narcolepsy, and be truthful with those around you.

soon_to_graduate · Mar 30, 2019

Does narcolepsy have to be reported to the BON?

Im about to graduate and worry it will affect my job opportunities. I don’t plan on disclosing with my employer but I recently decided I wanted to come out about my narcolepsy. Majority of my friends and family don’t know. I let it majorly affect my self esteem and I’m now proud to be at this point in my career despite my obstacles.

Ive worked in another field of medicine for many years and I quickly made it to the top at my hospital. The doctors assured me it didn’t hold me back and in fact, I was one of the best, something I never believed. There were several very rare days I didn’t go into work bc I didn’t feel safe putting a life in my hands. I would never allow that to happen. I worked very well in emergent situations and serious cases but worry as a nurse this would be looked down upon. Let’s be real, most do not understand narcolepsy and would t want one as their nurse