Battling narcolepsy with nutrition


photo by Erin Shildmyer

Webster University student Charissa Martin considered herself the “always-sick, never-feels-good” girl who normally took around six medications at once.

Martin, 24, felt tired all the time. She was sleeping for up to 12 hours a day, yet she was still tired.

In August 2013, she had a sleep study and was diagnosed with narcolepsy. According to nonprofit medical research group Mayo Clinic, narcolepsy is a chronic sleep disorder associated with overwhelming daytime drowsiness and sudden sleep attacks.Screen Shot 2015-03-25 at 10.41.42 AM

“I didn’t think I had narcolepsy before I was diagnosed because I thought it was what you see in the movies where people just randomly fall asleep,” Martin said. “That didn’t happen to me.”

The beginning stages

Martin said her perpetual exhaustion goes back to her middle-school and high-school days. She was often sick with a cold or sinus infection and was always tired.

“I’d just be standing around my friends saying, ‘I’m tired,’ without thinking about it,” Martin said.

Things gradually worsened when she started college. Martin was a psychology student at University of Missouri-Columbia (Mizzou) before attending Webster. She battled depression in addition to having constant fatigue. She was facing financial aid problems as well, which resulted in her leaving Mizzou for Webster to major in audio production.

She thought her problems came just from being upset. She thought majoring in something she was passionate about would help.

“I didn’t realize at that time that I had undiagnosed health problems that were making me so fatigued all the time,” Martin said.

She eventually started seeing doctors and psychiatrists, who prescribed different medications. Those medications worked, and she felt better, but only for a couple of months.

The physicians kept giving her more medications or changing what she was taking. Finally, she took the sleep study.

“The diagnosis at least brought resolution to the fact that I wasn’t just lazy,” Martin said.

Nevertheless, the medications kept coming. She hated the fact that she was prescribed multiple medications and still did not feel better. She also felt a lack of support from family and faculty.

Martin felt there were “standards” she couldn’t reach or that others were not willing to accommodate for her.  She was sick of struggling.

“My parents are both in their early 50s and are already diabetics,” Martin said. “I just lost my 53-year-old uncle to pancreatic cancer two years after his dad passed away with Alzheimer’s disease.  I didn’t like that I was young and already consistently sick and watching people that are only about twice my age passing away from chronic illness.”

A new solution

Martin has joined a narcolepsy support group on Facebook. She started reading others’ stories about adopting a gluten-free diet and finding some relief from their narcolepsy, but she  didn’t think she could do it.

“I liked my pizza, I liked my cake,” Martin said. “I didn’t want to give those things up.”

She gave it a try and eliminated gluten from her diet. In the first week, she noticed a spike in energy. She was not as fatigued, needed less medication and her digestion problems were resolved. She did more research and eventually started to think her problem was more connected to food than she had thought.

“The general public thinks their problems are just bad genes, but it’s more complicated than that,” Martin said. “Our lifestyles, our diet, our activity level strongly affect our gene expression.”

Martin’s research led her to the conclusion that changing the factors affecting one’s gene expression can send diseases into remission. The more research she did, the more foods she eliminated and brought in.

Martin now eats foods that are not inflammatory. She avoids grains and eats fresh vegetables, with fruit on occasion. She eats fish and certain meats that are easily digestible. Today, she only takes one medication.

Changing directions

After making changes to her lifestyle, Martin decided to pursue helping others, as well.

If financial aid comes through, Martin wishes to stay at Webster one more year. She is now looking to double major in biological sciences, adding onto her audio production major. She wants to attend graduate school and apply to an immunology program. Martin wants others to know that taking pills isn’t the only way to achieve a healthier lifestyle.  She believes chronic illnesses, such as narcolepsy, are on the rise and wants to get the word out.

“When I started to tell people, they didn’t want to listen,” Martin said. “I don’t think I can change people’s minds, but that pushes me to do more.”

In January 2014, Martin convinced Victoria Brown-Kennerly, an assistant professor in Webster’s biological sciences department, to allow her to take her 3000-level genetics class without prerequisites.

For Brown-Kennerly, Martin’s passion compelled her to give Martin a chance.  Brown-Kennerly said Martin knew the “ins and outs” of research.

“It was that spark, that drive, the motivation and the sincerity,” Brown-Kennerly said.  “If a student is that well-spoken and can lay out a cogent argument for at least being given a chance, that means they really want it.” 

Brown-Kennerly was also impressed Martin knew what she wanted to do after graduation.  Martin knew what she wanted to do before mapping out how to get there.  She was not wishy-washy about her future.

“She had a goal,” Brown-Kennerly said.  “She knew where she wanted to go and why she wanted to go there.  I see a lot of students who do really well and graduate, and I’m so happy for them, but they don’t have a plan.”

Both came to an agreement and, through the Academic Resource Center, Martin was given that chance.  Although there was struggle in the beginning, Martin managed to pass both the lab and lecture with A’s.

At that point, Martin felt like a different person. That passion came from her taking control of the things over which she had power.  She still suffers from narcolepsy, but she feels stronger.

“I’m not failing to thrive,” Martin said. “I feel healthy, and I have a drive. I feel like I can succeed now.”

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