My Health Journey with Narcolepsy and Using Personalized Nutrition to Heal
Last week, I shared a few seconds of my health journey on Dr. Hyman’s Broken Brain 2 Docuseries. Afterwards, I received many emails which have prompted me to share my full story of being diagnosed with a neurological disease called narcolepsy and my journey navigating between the worlds of conventional and functional medicine. I’ve shared my story on a few podcasts but never before on my own website. It still makes me nervous to share. There’s a few voices in my head that say: who would be interested in reading about your own health journey? Or another voice that says: some things are meant to be private OR another voice: you haven’t fully healed; your health is not perfect. Today, I’m choosing to ignore all three voices in hopes that my story may help you fully understand the importance of functional medicine and to know that if you are going through your own health struggles, you are not alone. If you read all the way to the end you will also get my seven takeaways for anyone that is on a journey of optimizing your health and wellness.
My Experience with Narcolepsy
In 2004, I was a freshman in high school, constantly exhausted and falling asleep during every class, every car ride, movie, football game, or social event. I would sleep when I was eating, having conversations, and sometimes while kissing my high school boyfriend. Let’s just say, that relationship didn’t last! I even remember during track and cross country practices, we would have three minute rests in between 1,200-meter interval repeats. In those three minutes, I would lay in the grass and fall asleep while everyone else drank water and socialized. When it was time to run again, my friend’s older sister would wake me up and I would run the next interval. This also happened when my friend, Ashley and I spontaneously decided to bike 150 miles across Ohio in two days in order to raise money for MS patients, with no previous bike training. Let’s just say it was brutal but also highly entertaining—we decided to do ride on mountain bikes which added a lot of misery. Every 10-15 miles there was a rest stop and I would get off of my bike and fall asleep in the grass. Ashley would go grab some orange slices at the snack table, use the restroom and then wake me up for more biking. And we would continue.
Living with Narcolepsy is the Equivalent of 32 Hours of Sleep Deprivation
For those that don’t know what narcolepsy is, it’s a neurological disease characterized by issues regulating the sleep-wake cycle. Approximately one in every 2,000 people in the United States suffers with narcolepsy. Symptoms include inability to control when you fall asleep, like the guy in Rat Race that falls asleep standing up; sleep attacks; cataplexies; sleep paralysis; and hallucinations. To most, it not only doesn’t seem like a serious disease, many find it comical. It makes for funny stories when you fall asleep next to a dumpster, on a ski lift, during a test, or at the dentist. But for people facing narcolepsy, it’s an everyday struggle to find the energy to live life. It’s estimated in research that being narcoleptic is equivalent to a 32-hour sleep deprivation for a normal person.
It Came On So Gradually that it was Hard to Think of it as Abnormal
In seventh grade, I started napping a lot more, my face blew up with acne and I had horrible GI symptoms. My parents thought maybe I had mono because I was always tired. But it was slowly getting worse in time. By ninth grade, my teachers continuously told my parents that I couldn’t have cared less about school because I was either sleeping or socializing, my grades hit rock bottom, my friends complained that I would fall asleep during every movie and my family got fed up with me being non-stop moody. It came on so gradually that it was hard to think of it as abnormal. I rarely even complained about being tired because I was just busy sleeping through everything.
In addition to sleeping all the time, I also developed cataplexies. These are essentially mini seizures that occur in people with type 1 narcolepsy. My eyes would roll to the back of my head and each episode would last for 5-10 seconds. I experienced about 20 per day. They were always triggered by laughter and for anyone that knows me, I am always laughing. So, I was basically either sleeping or laughing and having these mini seizures. Sometimes I would lose my balance or fall because my knees would give in during the episodes. It became a concern after I almost drowned in my friend’s pool while having a cataplexy episode. Her parents then required me to wear a lifejacket at all times around water and at their lake house—not very glamorous!
“There is No Research”
These instances were gradually becoming more noticeably concerning so my parents took me to the Cleveland Clinic Sleep Disorder Center where we saw a neurologist. After an overnight polysomnogram test and a Multiple Sleep Latency Test, I was diagnosed with a severe stage of narcolepsy and cataplexies. The doctor, let’s call him Dr. K, told my parents that it was a genetic condition and that I would be dependent on prescription stimulants for the rest of my life. He said that it often gets worse with age and that in that case, we could increase the dose of my medication. My parents felt unsettled by this information because we had no known family history of this supposed genetic condition and they felt uncomfortable putting me on medications that were new to the market and had many potential side effects. As many parents reading this can probably relate to. My neurologist adamantly disagreed saying that the drugs were my only choice and that there was no point in seeking alternative forms of medicine because “there is no research to show that diet and lifestyle are associated with your disease”. I’ve never seen someone be so convinced of something.
Incorporating Functional Medicine into my Treatment
Let it be known that my parents are not doctors—my dad works passionately in the construction industry and my mom is an amazing secretary—but they are super smart and have a lot of common sense. Enough common sense to know that medication should not be the first line of intervention. A few months after I was diagnosed, my parents dragged me to a functional medicine doctor. She asked a lot of questions and ran a lot blood work to test for leaky gut, food sensitivities, nutrient deficiencies etc. I hated every second of it. Especially when she told me that I could never eat my favorite food again: a blue raspberry slushy float from Dairy Queen.
I hated it even more when I had to collect my urine for 24 hours. My parents forced me to do it on a weekend that I was going to my friend’s lake house with her family and older siblings. I showed up for the lake weekend with a cooler and a jug to hold my pee. And it of course, needed to be refrigerated. I was so nervous the whole weekend that someone would mistakenly drink my urine out of the back refrigerator! I never wanted functional medicine or collecting my urine in jugs or the weird Larabars that my mom forced me to try in the office. I wanted the quick fix because I didn’t believe food and functional medicine BS would be enough. I had a real disease with a real diagnosis. Fortunately, my parents didn’t listen to what I wanted. They gave me what I needed.
After the results came back, I was diagnosed with a leaky gut, a number of food sensitivities and nutrient imbalances. I was put on a strict elimination diet of no gluten, corn, soy, dairy, peanuts, and basically every food that I ate. My mom, God Bless her soul, went to three or four different grocery stores every week. She prepared homemade buffalo burgers, veggies and gluten-free pasta dishes, in addition to cooking dinner for the rest of my family. At the time, there were no more than five gluten-free pastas in the health food grocery store and zero in traditional grocery stores. All five tasted like cardboard and I would sit at the kitchen table crying because I couldn’t eat the same pasta as my brother and sister. I threw a huge party for myself that centered around pity. The party ended about three weeks into the elimination diet torture. I started to notice a very real shift in my energy levels. I was not cured but I was sleeping less often and experiencing less frequent cataplexies.
My parents and I were so excited to tell Dr. K about my improvements. During the follow up, we told him about the diet and supplements and my improvements. During the story, he turned his back to our excitement and started typing on the computer. He could not look us in the eye but argued that food could not have helped me. He ended up refusing to continue seeing me as a patient. At the time, he was the only pediatric neurologist in the department so I was forced to start seeing an adult neurologist. I eventually did start taking a small dose of medicine some days before I got my driver’s license. My parents were never opposed to the medicine but they were opposed to the idea of not doing everything in our power to check off all other boxes to optimize my health and well-being.
“You’re So Suprisingly Functional”
I eventually reintroduced foods back into my diet and was continually crippled each time that I introduced gluten. Gluten makes my brain shut down almost immediately. I can feel a loss of control in my eyes, similar to the initial signs of a cataplexy and I feel uncontrollably tired. Over the years, what has worked well for me is remaining gluten-free, eating low carbohydrate, establishing regular sleep patterns, doing yoga, meditating, fixing my gut, and optimizing my detox pathways. I’ve done tons of additional tests to better understand root causes. I take an expensive long list of supplements and a small dose of medication on weekdays. Years later my new neurologists tell me: “you’re so surprisingly functional. It’s lucky that your body is so receptive to such a low dose of medication”. I was lucky in the sense that I was diagnosed by my conventional medicine doctors within a few years of my symptoms and my parents took me to see functional medicine. But other than that, IT WAS NOT LUCK. It was years of hard work and not taking the easy road of suppressing my symptoms with medication and hoping that it masked my food reactions and lifestyle choices that were not personalized to my unique needs. My health also is by no means perfect—but considerably better than where I started.
In the beginning, my parents were faced with so much opposition from me, from the doctor and even from the Cleveland Clinic. My heart fills with gratitude every time I think about the sacrifices that my parents made. Their unwavering support and the precedence that they placed on health and well-being are some of the greatest gifts that I’ve received in my lifetime. Unlike my initial neurologist, they were my truest health advocates. They didn’t go to medical school but they fought harder than any doctor fought for me. And this is natural given that they are my parents but I believe it should also come naturally for people that dedicate their lives to healthcare to fight for better answers for their patients.
True Universal Alignment
This was obviously the reason that I knew at 16 years old, that I was going to become a dietitian. The universe really aligned when in 2014, I was part of a small team that opened the Cleveland Clinic Center for Functional Medicine. Ten years after being denied coverage for functional medicine by the exact same hospital, I was a small part of the mission to bring functional medicine to people in the first hospital-based setting in the entire world. I barely even applied for the job—it was true divine intervention. I quickly went from patient to practitioner—thrown into learning functional medicine quickly. I didn’t always have all the answers in the beginning—Dr. Hyman likes to joke that I didn’t even know what an elimination diet was but I still took my role as a dietitian very seriously. I really cared about making every patient feel heard and helping them understand the value of their diet and their mind-body-spirit connection.
In the last 15 years of transitioning from patient to dietitian, I have taken away a number of valuable lessons that I want to share with you:
1. When given the right ingredients, the body has an amazing ability to help heal itself.
This has everything to do with optimizing the roots. If a tree isn’t given water or sunlight then it’s branches will die off. No tree treatment can mask the lack of sunlight and water. The same is true for the human body. It needs the proper ingredients.
2. The energy that you put into your body influences the energy that you have to give to the world more than anything else.
That’s everything from food to the energy from relationships, your thoughts and feelings—all of it is energy that we have the ability to filter. Even though I don’t randomly fall asleep anymore, my energy reserve is still much lower than most people. I require lots of sleep, naps, and rest. But as someone that has battled an energy-depriving disease for half of my life, it’s forced me to be hyper-aware of my own energy and the energy exchanges that are around me. When you see everything as energy you understand that the value of food is so much greater than a number of calories; that life is too short to waste on fake relationships and that one of the greatest powers anyone can ever have is a high vibe energy that is immediately felt when they walk into a room. Your wellness is centered in energy.
3. As parents, one of the most significant responsibilities that exist is modeling health behaviors.
My parents have always led by example. By always cooking dinner for our family, working out together, not allowing screens at dinner or in the bedrooms, going to church together, and expressing love. It makes living a nourished life the default for your kids. Not by preaching but by modeling.
4. You are not a victim.
Your illnesses or life circumstances are not happening to you, they are working in your favor. At the time that I was on the elimination diet and feeling so tired, my dad said to me: “it’s fine to feel sorry for yourself for a little while but you eventually need to figure out a way to pull yourself back on the horse and take control of your life”. He was right. I made myself out to be a victim which did not allow me to take control.
5. The idea of ‘everything in moderation’ doesn’t work for a lot of people.
It’s a lie from the food industry and a cop out for healthcare practitioners who don’t really know how much of something you should be eating. This is especially true if you have health issues. If you want to feel great then sometimes you can’t have certain foods. They need to become your non-negotiables.
6. Nutrition is a practice—it doesn’t happen overnight so be patient with yourself.
The longer that you practice, the easier that it becomes. Changing your diet can be stressful so it’s important to be kind and compassionate towards yourself. Create a sense of well-being from the inside out to prevent you from reaching for things outside of you like sugar, gluten, etc.
7. If you believe in functional medicine, it is worth continuing to fight for a better way.
While changes have been slow, there has been significant moment for functional medicine, dietitians, and better quality food products since I started this journey almost 15 years ago. We need to keep fighting the good fight!
Finally, I’d love to hear from you and learn more about your story. Send me an email at firstname.lastname@example.org or write a comment below and let me know about your own experience in conventional or functional medicine. This is definitely a conversation that is just getting started.