“My migraines went away, my sleep improved, I had fewer hypnagogic hallucinations, and my narcolepsy symptoms almost disappeared.”

This is a story about a passionate and driven individual.  A young lady with narcolepsy that has become a leader within the community of people with narcolepsy (PWN) that are bio-hacking their way OUT of narcolepsy and INTO life.

Christina is a doctoral candidate pursuing her degree in interdisciplinary biomedical sciences – her research focuses on the innate sensing mechanisms of intestinal epithelial cells and how this sensing may go awry in autoimmune disease.  In her free time (Uh oh…I can hear her saying “What free time?”) she created the blogs Autoimmune Patient and Gluten Free PWN.   Go to the online magazine Paleo Movement Magazine and you’ll find her contributions there, most notably to PWNs is the article called Paleo Narco: Applying Paleo Principles to Narcolepsy.  And as if that wasn’t enough, she was a presenter at the 2014 Narcolepsy Network Conference in Denver, Colorado where she shared her presentation titled Gluten Free PWN: Improving Narcolepsy Symptoms with Dietary Changes.

So what’s her story?  In her own words as originally posted on the site Gluten Free PWN:

CHRISTINA’S STORY

After what seems like a lifetime of sleepiness, I was formally diagnosed with narcolepsy in 2011 when I was 20 years old. I wrote in my journal the week before I was diagnosed:

I can’t go on like this. I am sick and tired of being sick and tired.

I suffered for a long time before I finally got a sleep study done. I had a therapist suggest that I might benefit from the drug “Xyrem.” I googled it and found message boards of people with narcolepsy and broke down in tears. I realized they were describing symptoms of a disease I had felt completely isolated and alone in – I didn’t know I had a disease, much less the name of it. I finally had a sleep study done in 2011.  Shortly after I was diagnosed, I started trying to find trends in my tiredness. I realized if I wasn’t eating, I could stay awake longer and be more alert. As soon as I would eat, I would fall asleep within about 30 minutes. I wondered if something that I was eating could be triggering my narcolepsy.

After doing some research on the internet and hearing stories of other people who had some symptom relief from a gluten free diet, I knew it was worth a shot. I was desperate to try anything. In addition to narcolepsy, I had terrible adult acne, mood and anxiety problems, joint pain, chronic migraines, IBS, Hashimoto’s Thyroiditis, and skin rashes. I felt like a train wreck. I suspected changing my diet would make me feel better overall, but I was astounded when it helped my narcolepsy.

If took me a few months of “practicing” a gluten free diet, but after I was able to finally make it three full weeks of being strictly gluten free, I woke up. My migraines went away, my sleep improved, I had fewer hypnagogic hallucinations, and my narcolepsy symptoms almost disappeared.

About six months later, after making no changes to my diet except that I was eating “gluten free” muffins instead of regular ones, my symptoms started creeping back. Since I had already seen drastic changes with diet changes in the past, I was encouraged that I could continue tweaking my diet and that I could bio-hack my way to reduced narcolepsy symptoms.

Again after doing a great deal of research and scouring the internet I adopted a stricter diet (that was inherently gluten free). The new diet was a very low-carb Paleo diet with some additional supplements including L-Tyrosine. I also started running and exercising more, which helped my symptoms a great deal.

Today, I manage my narcolepsy using a strict gluten free, low-carb, “Paleo” diet. I have had about 80% symptom relief, but I have to be very careful with stress, changes to my diet, and daily routine. I still get occasional flares, and I still cannot drive for more than about 45 minutes. Every day is a work in progress and I am constantly trying to use other bio-hacking techniques to improve my symptoms.

A powerful story isn’t it?  Are you curious to learn more about how food can help you manage your symptoms?  Check out my series on Diet for Narcolepsy:

Diet for Narcolepsy: A Science-y View from 30,000 Feet (Part 1 – Orexin)

Diet for Narcolepsy: A Science-y View from 30,000 Feet (Part 2 – Carbohydrate Control)

And stay tuned for Part 3 where I’ll dive into the gut…not literally, ew! We’ll just look at gut health and why I feel it is an integral part of this diet for narcolepsy.

See you soon!

Your Madcap Miss (a.k.a. Gina Dennis)

Madcap Disclaimer

BONUS:  Video of Christina’s presentation at the 2014 Narcolepsy Network Conference

Gluten Free PWN: Improving Narcolepsy Symptoms with Dietary Changes by Christina L. Graves, PhDc