September 28, 2016

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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  • Kate

    Proud to know and be inspired by Charissa!

  • Moshe Turner

    It’s well known among narcoleptics that carbs make you sleepy. Also, many narcoleptics try various schemes of changing their diets in an attempt to feel better. Ultimately, however, it is what it is. I think you should know the following information about narcolepsy:

    In a small area in our brain there is a population of about 100,000 specialized cells called orexin neurons which produce several neurotransmitters. Due to their having been identified and named almost simultaneously by separate teams in the US and Japan they are also known as hypocretin neurons, as each team named their discovery independently. For simplicity we will call them orexin neurons, and the peptide they primarily produce, orexin.

    When these orexin neurons are either completely or partially killed off by a misdirected immune response, orexin becomes either mostly or completely unavailable and therefore the signaling it does becomes drastically limited or stops completely. This causes much dysfunction in the nervous system. The most visible and recognizable physical manifestation of this dysfunction is a cluster of symptoms collectively known for the last 100 years as narcolepsy. The signature feature of
    narcolepsy is the dysregulation of a person’s sleep/wake cycles, a neurological function normally modulated by orexin; nighttime sleep is repeatedly interrupted and daytime wakefulness is punctuated by bouts of Excessive Daytime Sleepiness (EDS). Other symptoms of narcolepsy include sleep paralysis (an inability to move or speak), hypnagogic and hypnopompic
    hallucinations (upon entering or leaving sleep, respectively) and cataplexy, a sudden loss of muscle tone that leads to a state of temporary paralysis.

    Narcolepsy used to be known as a sleep disorder of psychological origin as scientists had not been able to find a physiological cause. That changed with the discovery of orexin in 1998. In recent years narcolepsy has been reclassified as neurological disorder, with type 1 narcolepsy (with cataplexy) occurring in 65-70% of patients. Most of the remaining sufferers fall into the category of Type 2 narcolepsy (without cataplexy).

    Orexin is a central player in nervous system function. It regulates or is involved in the regulation
    of almost all of the other neurotransmitters, and plays such a prominent role that it has been called “the conductor of the neural symphony”. Apart from regulating the sleep/wake cycle, orexin functions as a sensor and integrator of the internal and external environment and in response to changing conditions such as hunger, fear, cold, etc., orexin regulates food seeking, homeostasis, sex drive, thermogenesis, respiration, executive function and cognition, motivation, mood, circulatory and cardiac function, intestinal motility, olfactory perception and a host of other processes. Also, because orexin directly regulates other neurotransmitters, when orexin is not available the result is a series of cascading failures of those other systems that can cause a host of other symptoms that appear to be unrelated.

    Very few clinicians are knowledgeable about narcolepsy and are not able to understand the connections between these apparently unrelated symptoms. They often dismiss their patients as having psychological problems or simply lump them all under the catch-all diagnosis of dysautonomia. Accordingly, patients are often denied treatment for the very real symptoms of what is essentially an invisible illness.

    Even fewer medical people have the knowledge and skills to accurately dianose narcolepsy. Although modern internet communication has gone a long way towards improving diagnosis
    times, it is still not unusual for a patient to go 2-6 years before getting a diagnosis. Older narcoleptics will often tell you that they went without diagnosis for as long 30 or 40 years.

    Undiagnosed, narcolepsy slowly destroys the lives of those who are afflicted with it. This stealthy
    and silent condition affects every aspect of living. Often, by the time a diagnosis is obtained it
    is too late to rescue what has been lost; marriages are ruined, careers lost, family becomes
    estranged, friendships ended. Further, it is so difficult for other people to understand what it’s like to be a narcoleptic that even after diagnosis the condition’s effects continue to wreak havoc in a person’s life. It is not unusual for narcoleptics to end up poor, divorced and unemployed.

    Ask any narcoleptic what they want most and almost every time the answer you’ll get is “I want other people to understand what it’s like to be me.”

    While narcolepsy is essentially a stable condition, over time due to the ongoing dysregulation of many physical processes and the effect of a lifetime without restful sleep eventually takes it’s toll on a body and symptoms will worsen and new ones may arise. In particular, while the arrival of middle age often signals a slowing down for most people, the effect is amplified many times over in narcoleptics, whose bodies’ ability to regulate homeostasis is already impaired.

    There is currently no cure for narcolepsy. Most narcoleptics are treated with stimulant medications for EDS, but due to poor understanding by physicians narcoleptics asking for increased doses are seen as drug seeking and denied the medicines they need. Some of those with type 1 narcolepsy make use of anti-depressants, especially SNRI’s to help with cataplexy. Those who can tolerate the often serious physical and psychological side effects use sodium oxybate, a sleep consolidator and anti-cataplexy drug. However, many narcoleptics are denied the medicines they need by their
    insurance carriers, some have bad reactions to various medications, and others are uninsured or otherwise can’t afford the staggering costs of some of these medicines, which can cost upwards
    of $10,000 per month.

    Despite its crippling effects, the invisible nature of narcolepsy and its rarity of occurrence (1 of 2000 persons in the US are affected) have kept narcolepsy from being listed by the Social Security
    Administration in its “Blue Book” of recognized disabling conditions. When applying for disability
    benefits from SSA, a person with narcolepsy will be denied coverage and must appeal at least twice, ending up in a hearing before an administrative law judge who will make a determination based upon the testimony the applicant provides at the hearing and on the advice of a vocational expert also in attendance. This process can take upwards of three years, whereas a person with a much less critically disabling condition can sometimes apply and be granted benefits in a matter of months.

    While Charissa Martin may for the moment have stabilised her narcolepsy and made it manageable through the various means she has employed, the bad news is that it isn’t always going to be that way. She should begin planning today for the inevitable….. she will eventually find the narcolepsy disabling, as does almost every other person with the disorder at some point.

    • Lily

      First of all, thank you for posting. It’s important information for those living with narcolepsy, as well as anyone who knows a person with narcolepsy. I had to deal with years of being shouted at, cold water thrown over me, etc. – by ‘well-meaning’ parents and teachers trying to wake me up. I went 24 years before I was finally diagnosed in med school by a teacher who couldn’t help but notice my sleepiness went beyond the usual uni lifestyle fatigue.

      Personally, I don’t consider it disabling. Yes, I’m drowsy a lot more than other people. I struggle with energy levels in general, but I get things done. I make my time count. We all face challenges.

      I’m lucky to have been born in Canada, where I don’t have to worry about crippling medical costs. My heart goes out to anyone with any medical condition who cannot afford treatment.

      • Dee Dee K Shannon

        As a mother of a narcoleptic child diagnosed at 12 yes old. She has severe narcolepsy and cateplexy. Its hard to see someone with narcolepsy say it’s not disabling. It is very much so disabling. There obviously are varying degrees of this and my daughter unfortunately is the extreme end. Without her xyrem at night and her stimulant and cateplexy meds during the day . She cant function at all. We she see’s articles were people play down the severity or say it can be changed with just food. It makes her feel like a failure. Please don’t make such a vague statement about a disabling disease like this can be for some. I pray they do come up with a cure for this . I know all these medications are affecting her body and she will have more problems with health as she gets older. I stress about it daily and cry for her often. She graduates this year from high school with hopes of being a nurse. Thanks,
        a concerned mother of a narcoleptic daughter

        • Lily

          I’m talking about myself, not your daughter.