Narcolepsy: A Comorbidity Magnet?

Recently I have been unable to get one question out of my mind: Is narcolepsy a magnet for other illnesses, disorders, and diseases? It has led to me to trying to answer another question: Why do the people I have met with narcolepsy tend to develop comorbidities? Is it just a coincidence or is there something to it?

What is a comorbidity?

The Oxford English Dictionary defines "comorbidity" as "the coexistence of two or more diseases, disorders, or pathological processes in one individual, esp. as a complicating factor affecting the prognosis or treatment of a patient."¹

Before I was diagnosed with type 1 narcolepsy, I was healthy, fit, and happy. Now, I have several sleep disorders and other chronic illnesses as well.

My question is why, after the diagnosis of narcolepsy, did my body get so weak that it would not fight these new illnesses and diseases? It is as if having narcolepsy opened Pandora's box to a lifetime of both unique and common illnesses.

Common comorbidities in people with narcolepsy

One must ask oneself: Can this really be a coincidence? Surely there must be a reason, something that explains how someone can go from healthy — and maybe with only narcolepsy symptoms at first — to a whole host of other problems. I have met many people from all over the world of different ethnic, social, and economic backgrounds, yet so many of them have the same or similar comorbidities.

A few of the most common illnesses I have heard other narcoleptics say they have had throughout the years are back and body pain, fibromyalgia, sleep apnea (and other sleep disorders like restless legs syndrome), and diabetes. I have also heard others say they have mental health comorbidities. Research suggests that people with narcolepsy have high rates of anxiety, depression, and attention deficit hyperactivity disorder (ADHD).

With so many people also developing other conditions in addition to their narcolepsy, why are so many doctors not discussing this with us at diagnosis? Clinicians seem to be becoming more aware of how caring for narcolepsy patients can involve caring for many other body systems, like our immune system, mental health, and metabolic systems.^2,3

How do we keep pushing forward through new diagnoses?

If doctors are aware that certain medications or lifestyle changes that will have to be made due to narcolepsy will affect other areas of our life and health, should they not share that information? I had to find out by surprise as I gained a new sleep disorder every 5 years or so.

Then, last year, the nail in the coffin was being diagnosed with hypertension and type 2 diabetes. It felt like I had been walking slowly up a mountain, slowly managing and adapting to each new disorder or illness, only to see a mudslide speeding down toward me. How do you avoid it, and how do you keep getting back up and pushing forward?

Working with an interconnected healthcare team

I speak with my neurologist monthly. My neurology team not only looks to help manage my narcolepsy and cataplexy symptoms, but also works hand in hand with managing all my other diseases or disorders. They manage my medicines so that I am not put on any medicine for one disease or disorder that will have a negative interaction with another medication I am already on. They keep my GP updated with any changes that need to be made. When the stimulants I was on to keep me awake in the day were causing me to have tachycardia and hypertension, the neurologist worked with the cardiology department in making the decision to remove me from those medications.

Whilst this form of interdepartmental communication is good when it comes to treating the symptoms of each comorbidity concurrently, I think a more intentional look at why these comorbidities develop and communicating with other departments to prevent it from occurring would be a much better solution.

How do you manage multiple conditions with narcolepsy?

I hope that it is obvious that I am grateful for my doctors and for the doctors out there working hard to find solutions that will better treat or improve my quality of life. I do think, though, that those in powerful and influential positions need to do some research to find better solutions for us. This illness is no joke! When you start to realize that narcolepsy can be a catalyst for a whole host of health issues, it can really put the illness in a whole new category of its own.

Do you have any comorbidities? How do you manage new diseases or disorders when already living with narcolepsy?