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My Narcolepsy Story

Before I dive into my narcolepsy story I just wanted to thank you from the bottom of my heart for taking the time to read this website. I’ve devoted a massive amount of time and research into it and it means the world to me that you’re reading this.

Without further adieu,

My Story.

First noticing it in college

The first time I asked myself if I had narcolepsy I was a sophomore in college. I was finding myself always needing to take naps in-between classes and couldn’t remember the last time I felt fully rested. It struck me as peculiar that a 20-year-old-year healthy student that exercised at least 3 times a week was constantly tired.

I mentioned this to my mom and she suggested that I have a sleep study conducted to make sure that I didn’t have any major issues. Seeing that my dad had sleep apnea I thought this was a good idea.

In late 2010 I chose to see a sleep specialist.

I jumped through all the hoops; they checked my thyroid, I was asked about my lifestyle, was asked how rested I was feeling on a daily basis, took a sleep study, etc. After all the poking and prodding my first sleep study at the end of 2010 finally confirmed that I did indeed have a sleeping problem.

Original diagnosis of sleep apnea

In the Fall of 2011, my sleep doctor in Buffalo, New York came to the conclusion that I had sleep apnea, which he believed was largely caused by the structure of my nose canals. In January of 2012, I underwent a tonsillectomy and partial uvulectomy to clear up my airways to ensure that I was breathing properly while I slept. Two weeks passed and the swelling of my removed tonsils finally calmed down. I was on my way to a full recovery but there was one problem.

My sleep was still awful.

So after a total of 18 months in and out of the sleep specialist, 3 overnight sleep studies, and one major surgery, I found myself at square one again.

Narcolepsy Diagnosis

During my last semester of college, In the spring of 2012, I underwent two more sleep studies with a narcolepsy specialist to determine what the true issue was. Finally, after my 5th sleep study, it was concluded that I did, in fact, have narcolepsy. This conclusion was reached because I hit R.E.M. during all 5 of my daytime naps during the Multiple Sleep Latency Test (MSLT). So at the age of 22 years old, only weeks after having graduated college I was diagnosed with this chronic sleeping disorder known as narcolepsy.

*Throughout all of this I have shown no signs of cataplexy.*

Work experience

Around three months after the diagnosis, I began working at my family business in September. The family business is a medical testing laboratory that processes urine samples for rehab centers all across New York State. Seeing that the company is a fairly lean and small operation (under 15 employees at the time) there were no positions within it, besides sales.

As a result of being a salesman for a lab that processes samples all across the state, I had to spend a disproportionate amount of time on the road dealing with clients. A normal day for me could be 6.5+ hours on the road driving.

Now some of you may see where this is going…

Driving with narcolepsy is bad but it’s entirely manageable when you have a regimented schedule and when you don’t have to spend a substantial amount of your day behind the wheel. Having narcolepsy while driving being a cornerstone of your daily tasks for work is a disastrous combination.

Something had to give.

I can look back on those first four weeks of the job and see how in denial I was. I would pound red bulls, drink 3 cups of coffee in-between meetings, and even at one point tried to do jumping jacks in any bathroom that was near me all in an attempt to stay alert enough to drive.

But deep down I knew that this job and this disease could never co-exist. So I quit. It’s clear to note that up until this point I’ve been looking forward to working for the family business since I was a teenager. Ever since I was 17 I had my goals set on eventually running the company my father built. Now, at age 22, this dream was impossible because of a disease I never saw coming.

The stress of losing my job only worsened the symptoms. Actually, any sort of stress worsens the symptoms and makes it harder to manage. Having to quit my first professional position only 4 months after graduating college led to one of the lowest points of my life.

Quitting work and depression

Around October 2012 I fell into a deep depression because of this disease. I felt as though my ability to earn any kind of income was taken from me in one fell swoop. I felt like I let my entire family down because of my inability to work in the business and because I had no idea how I was going to make a living for myself. Anything requiring driving was eliminated and anything that required long hours at a desk with the little movement was not viable.

Things finally turned around when I left for Maryland to take a job with AmeriCorps NCCC. I was able to climb out of the rut by throwing myself into work and by staying busy.

Finding employment

After quitting the family business I jumped around from job to job. My work varied from the retail industry, working in restaurants, and all the way to working in AmeriCorps.

Eventually, I was able to pick up work at a mall with the retailer American Eagle as a first job post-MedLab (the laboratory). I decided that in the immediate future I should be finding work that kept me on my feet because those were the only jobs that seemed possible with this sleeping disorder.

After this experience, I began to seek out jobs that were physical and required little time spent being idle. I also made sure that I wasn’t operating any equipment (like a car) because I wanted to make sure that I didn’t jeopardize my own safety and the safety of those around me.

However, I knew that these kind of positions weren’t a long-term solution. I wanted a higher income than all of these positions could provide. I also wanted to be able to put my degree in Business Administration to work.

Digital Marketing

Eventually, I stumbled into the world of digital marketing. I had the idea that self-employment would be the best option. Being able to make my own schedule, work from home, with the ability to dictate my own hours has lifted a heavy burden from my shoulders. I’m no longer dependent on making a living from a schedule I have no control over. Self-employment has led to me being able to have a strict sleeping schedule and the freedom to live in any city.

Moving to Portland, Oregon

In October 2014 I decided it would be wise to live in a city that was possible to navigate car-less. Being that Buffalo, NY’s public transportation isn’t that developed it would be highly “unrealistic” to dwell in that city without owning a vehicle.

I finally became committed to crafting a life in an accordance with my narcolepsy instead of forcing one that wasn't

I thought it would be best if I settled in a city where not driving was possible. That’s how I ended up living in Portland, Oregon. I looked at my limitations with narcolepsy and decided it was best to craft a life around not being dependent on a car. I’ve been here since October 1st, 2014 and couldn’t be happier with the decision.

Going to unleash the power within

Fast forward 18 months to March 2016. I went to a behavior change seminar run by Tony Robbins called Unleash the Power Within. It was a 4-day event totaling 50 hours that taught you how to manage your emotional states better, how to break habits quicker and educate you on nutrition.

During this seminar, there was an exercise regarding physiology or the way we move. For about 60 minutes we had us alternate between “alert states” such as smiling with an arched back, broad shoulders while standing tall and “depressing states” or being hunched over, with shallow breathing, and poor posture. We would make these changes between postures as quick as possible for an entire hour. At first, I felt like it was a ridiculous exercise. But around 10 minutes in I noticed that my narcolepsy was being directly affected by the switches in body movement. After 30 minutes in I noticed the change to be overwhelmingly drastic.

The moment I arched my back, forced a smile and stood tall with heavy breathing the narcolepsy would fade away. of course, it simply didn’t go away but these movements and this exercise had a direct impact on my quality of alertness and fatigue.

The biggest breakthrough moment I had was realizing that body movement (less than intense exercise) had a direct effect on this disease. Call it my “AHA moment” if you will. It was after returning home from that seminar that I realized that I was sending my body all these signals without even realizing it.

From the way, I moved, to what I ate, to when I exposed my eyes to artificial sunlight — All of these things were telling my body when to be alert and when to be tired.

All these things mattered, and they had a much more positive effect on me than Provigil ever did (medications affect everyone differently, I am in no way belittling it’s the positive effect it can have on others).

In a nutshell that’s what led me to create this blog and to share my story.

The reason I created this blog

So here we are. It’s June 2016, as I’m writing this, and I couldn’t be happier to provide you with my story, tips, and resources on how to manage your narcolepsy to the best possible level.

By altering some aspects of your daily behavior, keeping a positive outlook, and being disciplined with your diet you can have a positive impact on your quality of life.

Please, Please, Please interact on this website by leaving suggestions/critiques/comments on my pages and posts or follow my Facebook group: https://www.facebook.com/NarcolepsInsight/ . I’m trying to provide this community with the best content possible and I need your help to make that happen.

Once again,

Thank you for spending your time to read this site.

-Peter