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/...ntid=100261632 http://www.sleepfoundation.org/artic...rder-and-sleep