The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 2

This is part two of the story, click here to read part one

 

After searching for a new neurologist, we found one only 30 mins away that was willing to accept me as a new patient. The first prescription I was given resulted in an allergic reaction. I was unable to keep food down for over 4 weeks. I felt weak, fatigued, light headed, and was experiencing occasional blood in my vomit. In the midst of this, some of my family was facing their own personal battles which flooded into mine, increasing the stress levels that were already insanely high.

I fell back into another depression. With my dad out of work and our house receiving no income, I let myself wallow in my sorrows. I was locked up in my room day after day, too sick to leave. None of my old friends came to visit, nor did I want them to. Instead I slept my life away, over analyzing and worrying about things I could not control. I tried reaching out to support groups for narcoleptics, unfortunately everyone utilizing the support page were also in their feelings. 

I stopped caring, and took it out on the people who loved and cared about me most. I wasn’t being understanding, I didn’t consider that this is something new to them and that people handle their feelings/actions differently because they didn’t want to say or do the wrong thing. But their quietness and fear is what ate away at me. When the silence was broken, the topic of discussion was always the same, revolving around me.

I was finally able to get an appointment at the Mayo Clinic in Jacksonville, where I met a fantastic medical staff that were eager to help me. Slowly I was able to pull myself out of my slump; each day seemed a little more hopeful and the light started shining brighter. After a few long drives up there for tests and studies, the specialist discussed the treatment plan he thought was most appropriate for me, which included a prescription that was my worst nightmare.

I was prescribed and am currently on Concerta (extended release stimulant, once a day), Ritalin (break-through stimulant, taken 3-4 times a day), and Xyrem (narcotic sedative better known as GHB or date rape drug of the 90s era, taken once in bed and again 4 hours into your sleep). Xyrem was an option that I was not wanting to consider and when I read the side effects I became more resistant in wanting to take it. The realist in me didn’t really see myself having a choice at this point if I wanted to continue to live a somewhat normal and productive life. 

1 in 200,000 people are diagnosed with narcolepsy, and it is not a curable disorder. Narcolepsy is an autoimmune sleep disorder that is caused by the lack of production of hypocretin chemicals in your brain. These chemicals control your arousal, wakefulness, and metabolism. Due to this shortage, one will experience some common symptoms (It’s not common to experience more than one or two of these, but I experience all of them);

  • Excessive Daytime Sleepiness (EDS) – An overwhelming sense of tiredness and fatigue throughout the day
  •  Cataplexy – Events during which a person has no reflex or voluntary muscle control. For example knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise, anger or heads drop or jaws go slack from the same kind of stimuli
  • Sleep paralysis – A limpness in the body associated with REM sleep resulting in temporary paralysis when the individual is falling asleep, or awakening. Episodes can last from a brief moment to several minutes even though the individual is conscious or on the borderline between sleep and consciousness (The best way I can explain this is to describe it as feeling like your paralyzed in a straitjacket, unable to move or speak. You feel and see demonic figures but you can only slur out some unrecognizable sounds. It feels like your soul is being sucked out of your body and you are unable to do anything except watch it happen).
  • Hypnagogic hallucinations – Vivid audio and visual events that a person with narcolepsy experiences while falling asleep, or while awakening.
  • Disrupted Nighttime Sleep (DNS) – The inability to maintain sleep for more than a few hours at a time.
  • Automatic Behavior (AB) – The performance of tasks that are often routine, dull or repetitive without conscious effort or memory.
  • Memory Lapses – Difficulty in remembering recent events, actions or words.

 As a narcoleptic your sleep patterns differ from someone who does not suffer from this disorder. Sleep latency is crucial in determining this diagnoses. There are multiple stages in the sleep cycle that are extremely important and affect how well your body recovers. Narcoleptics skip those stages and fall almost immediately into rapid eye movement (REM) sleep (it takes me an average of one minute to reach REM sleep, from the moment I close my eyes). Since I am unable to reach the other stages of sleep, it causes me to experience EDS. Without receiving the proper type of sleep, it affects almost all areas of my life including relationships with family and friends, education and employment, driving and public outgoings. While I crave for those things, I cannot commit to anything or anyone since I am unable to evaluate the level of EDS I will be experiencing in an hour, the next day, or next week.

The only medication that is capable of  helping me achieve a deep enough sleep is Xyrem.  My doctor started me on a normal low dose, twice a night taken at a consistent time. I am still undergoing changes in my doses as I’ve been experiencing some unpleasant results but I feel like there is still hope that this may work and I’ll be able to return to a somewhat normal lifestyle. This leads me to where I am today.

 This week I was informed that my car will be taken from me for good. It is nobody’s fault. It’s a part of life and growing up and at the end of the day it is a materialistic object that everyone takes for granted, but to me my car represented a lot more. It was the last possession I had that embodied the hope of my future and normality. It gave me hope that I will never be labeled by my disability, that I will overcome this battle and show the world that I’m much more than “that girl who falls asleep when she laughs”. It hurts to know that I will never have the luxury to hop in my car, Shmeebly, and go for a ride to the beach to hang out with my friends. I won’t be able to rush over to save my friend from making a poor decision of drinking and driving. I won’t be able to run errands without asking my parents for a ride.

It reminds me of everything I had worked so hard for. That I was so close to becoming the first person to graduate college on my mother’s side of the family, or all the goals and aspirations I have set and accomplished throughout my years on this earth. Not having my car reminds me that I’m now ‘Nikki the Narcoleptic’ and that’s who I will always be. Although those are all things that hit home for me, I also realized that it’s another challenge for me to overcome. I will not be a victim of my illness; it’s a part of me but it’s not who I am.

I can still do all the things that I have set out to do, I just have to remind myself that It’s going to take a little more time, a little more patience, more work, and a lot more love for myself. I will be driving again, whether that’s next year or five years down the road. I will value my future more than I can explain. I am grateful for the life I have been blessed to live, and I am starting to accept the hand of cards I’ve been dealt. The only obstacle I have to face is myself, and although I can be relentless, I am stronger than the person I see when I look in the mirror.

Looking back at my sophomore year of college, I would drink Red Bull or pre-workout every day, but nothing kept the sleepiness at bay. I would oversleep my alarm almost every morning, struggled getting to my lectures in time if I hadn’t already missed it. In class I would endlessly fight to stay awake, most lectures I could no longer fight the heaviness that was overcoming my head. My dreams would overlap my consciousness, and my hand would keep taking notes, which were impossible to decipher when trying to study for upcoming exams. I would go home and sleep for 16 hrs to wake up feeling like I’ve gone days without sleep. I would begin hallucinating as my brain uncontrollably transitioned into REM sleep, but my body remained awake. What followed was an irresistible sleep that went as deep as the unexplored ocean trenches- lasting 20 minutes. If someone tried to wake me, I would become very disoriented. I’d wake groggily unaware of my location and at times unable to recall my name.

When the Mayo Clinic doctors confirmed that I had type 1 narcolepsy, a sense of relief surged through my sleepy bones. By age 20, I had spent years looking for an answer with doctors telling me I’m just “lazy” or that I’m going through “hormonal changes”.

Unfortunately there is no cure, and it will be an ongoing struggle that I will deal with for the rest of my life. I am no longer allowed to legally drive and I have been put on medication that is required to be taken every day when I wake up and as needed throughout the day—but sadly that isn’t enough. I will continue to experience excess daytime sleepiness, sleep paralysis, cataplectic attacks, and night terrors. Some days (like today) are more frustrating than others and the battle becomes harder to fight. But I haven’t lost hope.

My name is Nicole Kenyon, I’m 21 years old. I live in Safety Harbor, Florida, and I have narcolepsy. I am one in 200,000 and I can finally say that I’m not alone.

 


Nicole Kenyon

Nicole Kenyon

Diagnosed with Type 1 Narcolepsy back in 2014, I had unknowingly been fighting the never-ending battle that is Narcolepsy dating as far back as 1999. Throughout the duration of my diagnosis I endured unruly mistreatment by medical professionals and helplessly watched others rob me of the option to pursue opportunities every person deserves to experience. In spite of all the setbacks, I have and continue to defy the stigma that comes with living with Narcolepsy and will not stop until there is a change in the status quo. As someone who has unknowingly experienced the disadvantages as a young adult living with Type 1 Narcolepsy, I strive to advocate for those who are also battling a disadvantage that makes living a life of independence next to impossible. To decrease diagnosis time it is crucial to spread awareness to those who are accountable for shaping future generations. In efforts to do so, I have made it my mission to work with congress as well as school district officials as an advocate for children and young adults living with Narcolepsy. I strive to work towards implementing legislation that will accommodate needs that are failing to be met when receiving a promised education. As of January 2020, diagnosed with Multiple Sclerosis. Advocacy Work Narcolepsy Network Patient Advocate for Rare Disease Week on Capitol Hill 2020                                                                                                                                                    Patient Advisory Panelist for Harmony Biosciences Child Advocate and Coach at Brain Balance, a learning center that offers a holistic approach to treating children with developmental and learning disabilities. Personal Narcolepsy Advocacy Platform via Instagram @fitniknarcoleptic

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