A Sleep Disorder Changed Everything, “I Had Actual Proof Right in Front of My Face That I Was Functioning While Sleeping”
August 13, 2015
As long as I can remember I’ve had some awkward sleeping habits. By the age of 6 or 7 I began sleepwalking/eating and snoring loud enough to wake up the whole house. Episodes always consisted of me going into my kitchen, either eating something or making some weird concoction and making a mess of the kitchen sometime between 1 and 4 in the morning.
If my parents tried to speak to me I would yell and scream at them but have no recollection of it in the morning. I may have fallen asleep a couple times in elementary school but not enough to cause concern. Other than my weird sleep walking episodes I seemed like a normal child… Until about age 12. The daytime problems were present by middle school. The first class I remember falling asleep in was my 6th grade math class and from there I began to sleep through almost every class, every day. My teachers complained to the principle but they were all aware of the fact that my parents were going through a rough divorce and I guess they assumed my lack of effort in school stemmed from the problems at home. I started acting out in the 6th grade and I was a troubled teen but I was still attending school daily until the 9th grade. I honestly don’t know how but I managed to just barely pass each year. (I still think the principle had a thing for my mom!)
I complained about being tired all the time and not being able to focus but after I tested negative for ADHD, everyone continued to assume that I was just being lazy. I had given up attempting to pay attention in class. I would come to school and sleep through every class, often times falling into such a deep sleep that my snoring could be heard in the classrooms across the hall. Teachers attempted to wake me up sometimes, but I think it was just because I was loud enough that the whole class knew I was sleeping. I did this every day until the end of the day no matter how much I slept the night before. A new principle took over when I was in the 8th grade and he made summer school a requirement in order to move on to the 9th grade. I slept through summer school as well but still got enough work done to pass.
As soon as I went into high school I began skipping almost all of the time. I failed 9th grade and dropped out of high school my 2nd year of it. I always knew how important it was to get a diploma, however I was just not motivated to attend school . I began attending GED classes for awhile but I slept through those as well and eventually gave up. At that point I was frustrated because earning my GED was something I wanted for myself and no matter how hard I tried, I could not stay awake when I tried to focus on a textbook or worksheet.
I was determined to find out why I was so tired all the time and I knew that my father had recently been diagnosed with Obstructive Sleep Apnea. Once it was apparent that some of my family members have sleeping disorders, I asked my doctor if I could possibly have OSA and she agreed that I should have an overnight sleep study done. I thought I had finally made sense of what was wrong with me when I was diagnosed with OSA. I had a rough time getting to sleep and they were only able to run the test for 4 hours, however that was plenty of time.
In those 4 hours, I woke up unconsciously 133 times and stopped breathing 199 times for an average of 15 seconds. The amount of sleep I was getting throughout the night was equivalent to about half the time I was in bed due to my OSA. I had a tonsillectomy and uvulectomy when I was 17. Some of my symptoms were relieved like the loud snoring and my sleepwalking episodes seemed to be less frequent but I never scheduled another sleep study to see if the surgery completely alleviated the problem.
If it didn’t, my next option would be having to wear a mask to bed, which at age 17, of course I was completely against that idea, or a more gruesome surgery like having part of my tongue cut off, obviously I wasn’t too fond of that option either. I never took the time to re-attempt GED classes after my surgery. I became pregnant with my daughter almost immediately afterwards and I was just worried about working at my crappy serving job and taking care of her. I was always working in a restaurant like setting where I was constantly moving from the time I left high school. I worked mostly overnights so I slept during the day but whenever I did try to stay awake during the daytime, it was nearly impossible for me to do.
I was extremely tired, I could drink a full pot of coffee and go right to sleep for hours, energy drinks and pills were a waste of money because they had no effect on me whatsoever. Even when I didn’t work the night before and was able to sleep all night, I still felt like a zombie until about 6-7pm when I would finally wake up a little bit. I think I just accepted that this was normal and I was going to live my life in a constantly exhausted state. I was raising a baby and working a full time job, being tired all the time comes with the territory.After spending 6 years serving the drunk crowd overnights, I landed what I considered a dream job in February 2011. Working 9am-5pm, Monday through Friday in an office setting. Being able to spend the nights and weekends with my 3 year old was all I could hope for and I had found a job where that was possible. It was a small company with a very family feel to it. I was responsible for handling all of the administrative duties for the company. As soon as the new job excitement wore off it felt like I was in school all over again. I started zoning out and falling asleep while I was typing on the computer.
It was un-noticed for awhile because I was good at my job and I had my own office so I would normally snap out of it before anyone saw me. If one of my co-workers did see me sleeping they would wake me up, no one ever really paid too much attention to it because sometimes it can be difficult for anyone who is tired to stay awake in that type of setting. Sitting at a desk, staring at a computer for 8 hours a day can take a toll on you. I loved my job and I was trying my hardest to fight off the sleepiness but over time my symptoms just seemed to get worse.
Often times I would type things into the computer that didn’t make sense or unknowingly change the status of accounts in the system. A few times I fell asleep on the phone with a customer for a minute or two right when I was accessing their account information and when I woke up I could not remember what exactly I was looking for or what the reason for the customers call was. I fell asleep at a red light on my way to work at least two times and never could drive more than a half hour without feeling extremely tired.
The day that I realized something was wrong came when I was writing down invoice numbers and balances for an account with several hundred invoices, I had an episode and began scribbling things out and writing words that had nothing to do with what I was doing in completely different handwriting. When I came to and looked at the paper, I was instantly in tears, I had ruined half the work I’d done and saw on paper that I was capable of writing full words with no recollection of doing it. When I showed some of the girls what I had done they began to cry with me. I didn’t fall asleep with my hand on the keyboard and accidentally type numbers or click on the mouse. I had actual proof right in front of my face that I was functioning while sleeping. I couldn’t deny that there was something seriously wrong with me, this wasn’t something a normal person does when they‘re tired.Once I looked up automatic behaviors and saw that it was associated with narcolepsy, I realized that I was dealing with every symptom of narcolepsy, the only thing I hadn’t experienced was sleep paralysis. After contacting a specialist, I had another overnight sleep study in January of 2012. The results determined that my sleep apnea was mild and couldn’t be the cause for my behavior. The study continued into the morning and that determined that I have severe narcolepsy. Everything that I had dealt with my entire life finally made sense. I figured I would be put on a treatment and everything would get better but I could not have been more wrong.
Finding an effective treatment for me felt like a roller coaster ride. First we tried Nuvigil which caused a severe allergic reaction that very well could’ve taken my life. I woke up one morning with my body covered in hives and I couldn’t breath, I spent the day in the emergency room hooked up to an IV. Despite taking the antibiotics and steroids the doctor prescribed me, I was back in the hospital within 24 hours of being released because I couldn’t breathe, I broke out in hives again, and my hands and feet were so swollen I couldn’t walk or bend my fingers.
I spent the night hooked up to the IV and an oxygen mask, left the next day with stronger prescriptions and an Epi Pen for emergencies. The next 2 weeks I was in and out of the ER several times battling the reaction and I ended up being admitted for a week. It took a few months and several doctors visits before I fully recovered from it because it messed me up so bad. I was retaining water and was barely able to walk, I became allergic to certain antibiotics that I had taken all my life and never had a reaction to. My immune system was just completely defenseless for quite awhile. When it was time to try another treatment plan doctor prescribed Zyrem.
I found out the hard way that its not recommended to give patients with parasomnias a sleep aid. Even on the maximum dose I was still sleep walking and eating, only the episodes were much more dangerous because I was so out of it. My sleep eating habits have always been the same since I was a kid, I mostly ate bread or cereal and at times I would do weird things like pour cereal and water into the sugar canister or put a scoop of butter in a bowl and pour milk on it then I would go back to bed after I made a mess of the kitchen.
I never really did anything dangerous like turning on the stove…until I was on Zyrem. After walking outside in the middle of the night and putting laundry detergent in my mouth, that was the end of that.
That’s when thinking about what the future held got scary for me. The doctor I was seeing told me I was what the FDA considered untreatable. The provigil caused such a severe reaction that attempting to take any other medicine used for treating Narcolepsy could be potentially life threatening. This doctor had no solution for me. I left that office feeling like my world was about to fall apart.If I couldn’t be treated my life would change forever. How was I going to ever further my education or maintain any type of decent job if I couldn’t stay awake? Despite my clean driving record, my license would be revoked for the rest of my life because I have an uncontrolled neurological disorder that there is no cure for and causes me to randomly have sleep attacks. I was going to be a person that had to live off of disability and catch the bus to run my errands. I know so many people have it way worse than me but at that point I didn’t want to hear anyone say that to me because that didn’t make my situation any better. I had so many plans for my life and I’m a single mother with a little girl that I am responsible for providing for.
She deserves a chance at a normal childhood where I’m able to take her to dance lessons and enroll her in extra-curricular activities, go to places we never been and make memories with her. How was I going to do all of those things? The future was terrifying. The only advantage I had at that time was that Maryland is not a doctor reporting state so the DMV couldn’t find out about my disorder unless I reported it. That wouldn’t help me forever though, unless I wanted stay in Maryland for the rest of my life, which I didn’t. I kept my diagnosis under wraps for awhile, only the people in my day to day life knew I had Narcolepsy.
Things were getting harder, I was having more and more sleep attacks. Luckily, I can feel them coming on when I’m driving…it’s hard to explain but I feel a different type of tired. I feel a different sensation that normally begins in my legs. I start to zone out and I also noticed that I never yawn when they are coming on, I cant…even when I try to force one. A yawn is supposed to refresh you and maybe I cant because you cant fight a sleep attack. It doesn’t matter if I roll down all the windows, blast the music, it doesn’t help. The one thing that has stopped the onset of an attack is when I got scared which happened a few times after I hallucinated a bush in the middle of the road or a set of brake lights in front of me even though I was on an empty road. I knew it was dangerous, but once I was diagnosed I understood that I could not fight sleepiness like a normal person and the onset of a sleep attack meant that I had to pull over and get out of my car or take a 15 minute nap before getting back on the road.
I was late for work a few times because I had to do that. My problems were getting worse there too, my desk was moved to next to one of my managers so that he could make sure I wasn’t sleeping. We had a huge argument after I had a sleep attack and he told me that he “had insomnia and got over it and I need to get it together.” I told him that insomnia was just one of my symptoms and he needed to get educated before he spoke to me because this is something that I will never get over, if anything my daytime symptoms will only get worse as I get older.
We had it out in the owners office. The only reason I was able to keep my job was because I was still productive. If I wasn’t a good employee, I would’ve lost my job. I made my incentive every month, handled almost all of the company’s administrative duties and I was one of the only people in the office that knew how to do everything. Working for a small company was a blessing because any where else I would have been jobless. My boss knew that I was sick, he stood by me when I was out of work for weeks because of this. He knew of Narcolepsy but both him and my manager didn’t really know what it was. I had his support but even so, I knew it wasn’t ok and as long as I was battling these symptoms my job was not secure and my life could be flipped upside down at any time. It was time to figure out another way to deal with this. I was very discouraged going into it but I needed a second opinion.
In November 2012 I began seeing a neurologist at University of Maryland Medical. After reviewing my sleep studies the first thing she said was “Wow!” Apparently I’m an interesting case so that made me a little nervous but I was already prepared to leave there with no solution. Then within 15 minutes of talking with her, she restored my hope that something could be done. She cross referenced the chemical components in the medicine that caused my reaction with other medications and researched known reactions. She told me that we would have to start on a very low dose with any type of medicine to make sure I could tolerate it and just like that she had a new treatment plan for me. I began taking 10mg of Adderall once in the morning and in the afternoon and when I didn’t have a reaction we continued increasing my dosage until my Narcolepsy was under control.
I rarely suffer from sleep attacks anymore but if I do it is most likely while I’m sitting at a desk, in a very hot room while reading. We tried Topamax to help with my sleep walking and NSRED but I was at the maximum dose before it would affect my birth control and it wasn’t doing anything for me so I stopped taking it. I’ve been dealing with my parasomnias for the last 20+ years and like I said my routine is pretty predictable, and now that I’m being treated for my daytime symptoms, I don’t sleepwalk as much, maybe once or twice a month. I just have insomnia more often. Still I feel like my disorder is well controlled, I can deal with waking up at 4am and not being able to go back to bed, it just means an early start on my day!I moved to Delaware last year, which is a doctor reporting state. Standing in the DMV while the guy was on the phone with the medical department and faxing over my medical report, trying to find out if he could approve my license was torture but I got through it. I have to submit a report every year from my neurologist certifying that I’m capable of driving but that’s not a big deal, I think people should have to do that every few years after a certain age anyway!
My disorder is listed in government databases now. I have no reason to keep quiet about it anymore. I may run into some problems over the years but I’ve got it under control right now and I’m not absolutely terrified that living with this disorder is going to ruin my life anymore! I finally feel like I can open up and share my story with anyone that wants to listen. Putting my story out there is just one way to connect with other people who go through the same struggles that I do. When I was first diagnosed, I thought about my teachers and about that 2 year period between when I started falling asleep in class and when I actually stopped making an effort in school. I wondered if just one of those teachers would have been a little more concerned with why this girl was falling asleep so much instead of, just viewing me as a lazy kid maybe I would have had a different outcome in school but I know there’s no point in thinking like that. The fact is that educators were uneducated about narcolepsy, they still are! Wondering “what if” wont change the past. The best thing I can do for myself is focus on my future and that is exactly what I‘m doing!
A few months ago when the company I was working at for the last 4 years shut down I saw it as a blessing in disguise. I’m grateful for my time there and the knowledge I left with. Having a little bit of time off gave me the chance to refocus my attention to the things that have always been important to me but never seemed possible. This time around, studying for my GED isn’t so hard because I’m being properly treated. As of right now I have passed 3 subjects and I will be taking my final subject in a few weeks! I will finally have my GED, I can continue my education, advance in an administrative career, work my way up the corporate ladder if I chose to but most importantly, I can set a good example for my daughter. The possibilities are endless!
The last time I truly put thought into what I wanted to do with my life I was about 13 years old, dreaming of being a cosmetologist and opening a salon one day. I knew I wasn’t as passionate about cosmetology as I used to be so what was I going to do? Honestly, I was drawing a blank for quite awhile and the fact that I had no idea what I wanted to do with my life worried me. My thought process was that everyone has an idea of what they want to be by the time they leave high school. Sure, they may change their minds as the years go on but they still have some type of plan for their lives. It seemed crazy to me that I had no idea what I wanted to do with my life. Then I remembered that I’m not like everyone else, I have been going through life as a zombie and I am finally waking up!! I have a fresh start and now that I am finally getting my life back on track, my dreams don’t seem so impossible!
After putting a lot of thought into figuring out what career field I wanted to purse, one day everything became crystal clear! Obviously nothing will happen over night, I know this is a life-long journey but I have to believe that God put me on this path for a reason! I don’t want to spend my life just dealing with living with Narcolepsy, I want to get involved in the fight against Narcolepsy and help spread awareness! So many people still don’t understand narcolepsy and I know first hand how this disorder can derail someone‘s life! My first step is going to be focusing on the ways that I can get involved in my area. I have also been looking into continuing my education and pursing my degree in journalism and mass communication.
I think that will give me the opportunity to get in to a field where I can have a career that I’m truly passionate about one day! I don’t know what exactly the future holds but what I do know is that I am excited to see what’s in store for me and what I can achieve now that I have finally woken up!
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