Share Your Journey | I Will Not Go Gentle into That Night
At what moment does one admit to themselves, family, and the world that they have more than a passing penchant for sleep as well as have cognitive issues? To be sleepy or “getting caught” napping evokes societal stigmas, e.g., “lazy,” “unproductive,” “disinterested.” Impaired cognition attracts its own unique descriptors: “stupid” or “irresponsible.” These traits one does not fancy to be exposed to the fast paced, push through the sleepiness, less sleep/more productivity, make it or break-it world in which we live. Yet a desire to nap to the point that it aches, the struggle to drive safely in the afternoon, forgetting specific tasks, or befuddled by a sea of Post-It® notes that serve to remind oneself of a fading memory, there comes a moment when admitting that a problem exists becomes inevitable. The anxiety and energy expended to hide feelings of inadequacy and maintain a façade of normalcy are far too unproductive and exhausting.
A Physician’s Guidance
During my first appointment with a sleep specialist an interesting revelation, as it relates to several within my family, was brought to light. Given that my gene pool includes seven siblings, it is a data point that seems more than simply some outlier. My clan is, for the most part, driven, successful, and self-employed (ergo the ideal recipe for self-treatment by way of napping). The majority tends to the side of sleepy with some brain fog. Early bedtimes, nine or more hours of nocturnal slumber, and requisite 1-2 naps, are not out of the norm. It never registered that my excessive sleepiness and propensity towards making lists could be signs of an underlying, biologically, and potentially genetically based sleep disorder. Our family’s “sleepy gene” as it was jokingly referred to, coupled with twelve courses of general anesthesia, may have left me a sleepy, anxious, memory mess in need of sorting out. My sleep specialist ordered a sleep study (i.e., polysomnography) followed by a Multiple Sleep Latency Test (MSLT).
First let me declare, “Thank universal wisdom for modern medicine!” Having a bionic hip and foot, I am a believer in modern medicine, clinical research, dedicated clinicians, analgesics, and anesthesia. X-Rays and yearly follow-ups are the diagnostic tools necessitated by bone trauma and degeneration to which I had grown accustomed. But a sleep study is a horse of a different color. Dark rooms, goop, wires, computers, and people whispering in distant rooms were part of the diagnostic testing of consciousness that was all new to me.
In the sleep room I was wired up, given instructions, and reminded when the lights went out of those instructions. I slept in comfortable bliss until asked to roll over on my back for a bit or I needed to use the bathroom. Awakened at 7:00 AM for breakfast and given cognitive testing, I then advanced to the MSLT (5 opportunities to naps at 2 hour intervals). No problem in the nap department and tried my best on the PVT (Psychomotor Vigilance Test). Instructions for cognitive testing given on a computer (part of ongoing research separate from the sleep study) left me blinking like a deer in the headlights. I had no clear understanding of the directions before pressing start and was not given any option to go back and start over. I pretty much proceeded by guessing.
The results of the MSLT mean latency of naps was 7.6 minutes; median sleep latency was 6 minutes. No rapid eye movement (REM) sleep during any of my naps. More worrisome was that I couldn’t even recall sleeping during 2 naps in which my brain wave patterns argued otherwise. My PVT “grade” was below average. Without much fanfare a diagnosis of idiopathic hypersomnia (IH) was rendered, with a mild degree of leg kicking and while on my back, minimal apnea. Results of my cognitive function testing for research purposes were not divulged, but I reckon they are headed in a generally southerly direction. IH is a disorder of brain function that includes a spectrum of symptoms that reflect a waking brain locked in a state of slumber without the natural ability to free itself from the shackles of sleep. Idiopathic means that its cause is not known.
Regarding this diagnosis, at first I was in denial, rationalizing it away as something that really does not matter. I get angry and tell myself I can control it. But there comes a point when trying to hide it is no longer an option. When all else fails, surrender and acceptance are my choices. Modafinil (generic for Provigil®) was prescribed and this quickly helped my insatiable desire to sleep. In 2015, however, our insurance company denied payment for modafinil and its close cousin armodafinil (i.e., Nuvigil®). “Current plan approved criteria does not allow coverage (of these medications) if the patient does not have a diagnosis of narcolepsy…. Shift Work Disorder, or obstructive sleep apnea….” Paying $600 out-of-pocket for a 30 day prescription is not a viable option. There is currently no FDA-approved medication for IH. My only recourse was to appeal the insurance company’s decision with my sleep doctor. Subsequent to the third appeal, our insurance provider finally provided coverage.
The prescribed medication helps with the daytime sleepiness and improves cognition; not 100%, but I will take any improvement. Also, short naps are sometimes necessary for late afternoon/evening driving as well as social functions. A nap exceeding 20-30 minutes makes my symptoms much worse. I continue to discover effective coping strategies to further address my cognitive issues and the anxiety that they seem to fuel. A professional therapist has been very helpful in sorting out the stress and anxiety spawned from the associated cognitive dysfunction. Mindfulness training has helped to move from a place of self-judgment to non-judgment and acceptance. It is all a process.
Awareness, diagnosis and acceptance are just the beginning of my journey with this beast presently named “idiopathic hypersomnia.” Many questions arise that beg for answers. How do I explain this diagnosis to my family and friends? What is my prognosis? How do I assimilate this life changing information? Are there varying spectrums of disorders of hypersomnolence? How much of hypersomnia is explained by genetic factors, and how much by environmental causes? Did my anesthetic “load” play a role in my case? Are current diagnostic tools sensitive and specific enough to accurately identify sleep disorders within the hypersomnolence spectrum? Are there better treatments waiting to be discovered?
To paraphrase Dylan Thomas*, I will not go gentle into that night. I will strive for greater awareness, understanding, and research to improve diagnostic measures and treatments for this elusive sleep disorder currently labeled as “idiopathic hypersomnia.”