In my journey of living with and advocating for Narcolepsy, there’s a profound, often terrifying, aspect of my daily reality that I haven’t extensively shared: my battle with an untreatable sleep apnea. This isn’t just a minor hurdle; it’s an invisible struggle that profoundly impacts every facet of my health and life, intertwined with my Narcolepsy in ways that demand deeper understanding.
The Maze of Diagnosis: More Than Just Narcolepsy
It took me years to truly comprehend my Type 1 Narcolepsy, especially with the severe ‘complete’ Cataplexy I was experiencing throughout my twenties. Honestly, had it not been for the constant, life-altering Cataplexy, I likely would never have even considered a sleep study. The diagnostic process itself was a marathon – two to three years immersed in medical literature, daily online interactions, and navigating a stressful medical system that only amplified my Narcolepsy symptoms. Initially, I struggled to actually believe it was Narcolepsy, suspecting something more obscure or seizure-related. It’s crucial to remember that Sleep Medicine is a relatively new field, fundamentally rooted in Sleep Apnea treatments and the multi-billion dollar industry surrounding Positive Airway Pressure (PAP) therapy devices.
When “Treatable” Doesn’t Apply: My Idiopathic Central Apnea
Most people are familiar with Obstructive Sleep Apnea (OSA), which is generally treatable with Continuous Positive Airway Pressure (CPAP) devices. A CPAP works by continuously blowing air to keep airways open, preventing apneas – episodes where breathing stops for 10 seconds or more. Heavy snoring with extended pauses is often a tell-tale sign of an apnea.
However, my situation proved far more complex. I was diagnosed with a “rare Idiopathic Central Apnea.” I deal with very shallow, light breathing, I hardly snore. My Sleep Specialist at Mayo Clinic noted they had seen this specific type in persons with Narcolepsy before, leaving me to ponder a potential underlying connection between Type 1 Narcolepsy and this rare apnea. There’s medical literature suggesting a link between respiratory and cardio function, regulated by Orexin/Hypocretin, which also underlies Type 1 Narcolepsy.
A Brutal Reality: The Failure of PAP Therapy
My apnea matter has been untreatable. For over nine months, I diligently tried various PAP therapy devices, including CPAP, Bilevel Positive Airway Pressure Spontaneous/Timed (BiPAP ST), and Variable Positive Airway Pressure Adapt-Servo Ventilator (VPAP ASV). Instead of improving, all my health matters, especially my severe Cataplexy, but everything spiraled out of control, amplifying brutally on all fronts.
The experience with local medical professionals was beyond distressing. My local Neurologist was close-minded and dismissive, with a lack of expertise, and the entire ordeal at the local sleep lab was so painful it caused me Post-Traumatic Stress Disorder (PTSD). Feeling misjudged, mistreated, not heard nor helped, I took the difficult but necessary step of seeking a second opinion at Mayo Clinic in Rochester, MN, a journey of over 16 hours by train, given my for years at that point choosing to not drive.
Unraveling Complexity at Mayo Clinic
At Mayo, I underwent extensive testing. After passing seizure tests, I proceeded with a Polysomnography (PSG) – a comprehensive overnight sleep study. They even had me wear the VPAP ASV during parts of the PSG. Following a 10-day period with an actigraphy watch, I then completed a Multiple Sleep Latency Test (MSLT), crucial for diagnosing hypersomnolence disorders like Narcolepsy.
The diagnosis was “Probable Narcolepsy with Definitive Cataplexy.” This was before the Type 1 and Type 2 classifications in 2013, when it was simply Narcolepsy with Cataplexy (now Type 1) and without Cataplexy (now Type 2). The “Probable” label stemmed from several testing challenges: I couldn’t achieve 6 hours of solid sleep during the PSG, my untreatable apnea interfered (as apnea matters typically need to be treated for a clear Narcolepsy diagnosis – it’s a part of the criteria guidelines for diagnosis of Narcolepsy), and a door was inadvertently opened during one of my MSLT naps. The Sleep Specialist candidly admitted these factors “botched the test not in your favor.” Even with 3 SOREMPs in 5 naps, my Mean Sleep Latency was 9 minutes, just one minute over the 8-minute criterion for a definitive Narcolepsy diagnosis. Also, I’d initially provided to both the local Neurologist and again at Mayo Clinic, videos of my experiencing severe ‘complete’ Cataplexy. Exhausted and just wanting answers, I declined a spinal tap to check Hypocretin/Orexin levels at the time.
The Perpetual Nightmare: Life with Untreatable Apnea
Fifteen years later, this apnea continues to be a severe struggle. The inability to tolerate PAP therapy means I’m left with an invisible, harsh toll on my heart, metabolism, mental stability, physical ability, and likely exacerbates my Narcolepsy over time.
My sleep is beyond broken, it is shattered and as though my brain has rewired itself to breath over sleep. For someone without sleep disorders, a single night of my sleep would be an unfathomable absolute nightmare. Narcolepsy itself causes broken sleep patterns, often skipping the early sleep stages going directly into REM, leading to “Disrupted Nighttime Sleep” or fragmented sleep with frequent awakenings. Add to this the horrendous idiopathic central apnea: many nights I wake up completely unable to breathe. In these moments, I have to get out of bed, remain calm, and mentally and physically force myself to breathe, consciously gradually bringing back autonomous breathing. The most frightening aspect is that this Idiopathic Central Apnea also occurs during the day, when I’m awake and relaxing or intensely focused, leading to moments of complete still airwas, breathlessness and even hypoxia-induced euphoria. This is why I refer to it as Idiopathic Central Apnea, not “Idiopathic Central Sleep Apnea.”
High Stakes: Altitude, Health, and an Unexpected Solution
I’ve been hesitant to write about this matter because of just how truly scary it is. During the Covid years, this condition became particularly terrifying. In late 2021, a snowboarding trip to Winter Park, CO (~10K elevation), became a medical emergency of sort. I couldn’t fall asleep because I had to manually control every breath; autonomous breathing simply wasn’t happening. After getting through the night, with only maybe a couple hours of sleep, I had to descend to Denver for relief. I can’t help but wonder if an undiagnosed Covid infection or recent weight gain had contributed to this heightened sensitivity.
Last October, the situation became critical even at my home elevation of ~800 feet. I felt as though I was constantly at 10K feet, experiencing daily and nightly apneas that often required over 20 minutes highly distressed, to regain autonomous breathing. Exhausted and frustrated by past negative medical interactions and the daunting prospect of starting from scratch with new doctors, I took an unconventional route after seeing my doctor. I purchased a smart pulse oximeter with a vibration/alarm feature. This device allows me to monitor my blood oxygen (SpO2) and pulse rate overnight, alarming me when my SpO2 drops. This intervention allows me to awaken and re-sync my breathing, preventing prolonged drops in oxygen. Within a month, I noticed significant improvement, feeling more like I was at 800 feet elevation again. Given this progress and the high cost of further testing, I canceled new doctor appointments that I’d setup early on before getting the device.
Beyond My Story: Understanding Sleep Apnea and Advocacy
Sleep apnea is a serious, potentially life-threatening condition. It’s estimated that 26 percent of adults aged 30 to 70 years have sleep apnea. Getting tested typically involves a Polysomnography (PSG) in a sleep lab, where around 30 nodes are attached to monitor brain activity, respiratory efforts, and body movements. A PSG is critical for diagnosing a range of sleep disorders, including Sleep-Related Breathing Disorders like apneas, Hypersomnolence Disorders such as Narcolepsy, Parasomnia Disorders like REM Behavioral Disorder, Sleep-Related Movement Disorders, and Circadian Rhythm Disorders. Other tools like Actigraphy watches and the MSLT further aid in diagnosis.
One hope is that through my advocacy, eventually, I’ll connect with a medical professional who possesses genuine expertise in these complex, interwoven sleep disorders and approaches my case with an open mind and respect.
Dreaming of a More Understood Future
Living with untreatable Idiopathic Central Apnea alongside Narcolepsy is a continuous, often frightening, struggle. It’s a testament to the profound complexities of sleep disorders and the desperate need for evolving understanding and terminology in the medical community. My story is a call for greater awareness, empathy, and expertise for those navigating such challenging, invisible battles.
Disclaimer: The information provided in this article is intended for informational and educational purposes only. Seek a qualified medical professional with expertise in Narcolepsy for diagnosis or treatment. I am not a medical professional.
Spanish version
Japanese/ソロモン・ブリッグスによる日本語訳
Created by: Solomon Briggs
(aka Narcoplexic)
September 7th, 2025
The Silent Struggle: Navigating Untreatable Apnea Alongside Narcolepsy – A Call for Deeper Understanding© 2025 by Solomon Briggs is licensed under CC BY-NC 4.0
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