I’m sharing my experience dealing with what might be the most underdiagnosed and under-treated health disorder today.
I recently read Susannah Cahalan’s Brain on Fire, an account of the young journalist’s descent into madness in mere weeks from a brain infection. I read about how hard it was to diagnose, her subsequent months-long hospital admission, and her eventual recovery.
It resonated with me. I had just spent the previous several years in progressively worse mental shape suffering from an unknown condition. My own experience shared with hers in the ambiguity of a diagnosis until I realized I had a sleep disorder called sleep apnea. And like Susannah’s story, there was a lot of suffering until I could go from diagnosis to recovery.
Sleep apnea came close to ruining my life and gave me endless trouble and pain. But, astonishingly, I learned that it’s one of the most common illnesses in the general population—up to 20% of US adults will eventually get it, and it is untreated or undiagnosed in up to 90% of cases. I also learned that it’s a syndrome-type illness with many causes that can be physiologically challenging to diagnose and treat. And I realized that if you have it, no sleep hygiene, cooling covers, optimized sunlight, or exercise will help until you deal with the root cause.
I want to talk about my own story and hope it provides insight to others about the nature of sleep-disordered breathing. And share tips on dealing with and diagnosing chronic illness, coping with a mental health crisis, and working within the US medical system.
I’ll start from the beginning.
In my early 20s, life was good. I had finished college and moved to downtown Toronto, surrounded by friends. I was making money. I was debt free. I didn’t have anything tying me down. And my goals in life were to live it to the fullest, accordingly to my early male brain. Go out every night. Go party. Do it for the story. Repeat.
When I was 25, I decided to move to the Bay Area. Toronto felt small in terms of the tech industry. Luckily, I knew people working on a high-growth, well-funded startup called Wish in downtown SF and decided to join and make a move. It was time to get serious, make something of myself, and step it up to the big leagues.
My time at Wish was intense and stressful. We under hired by several orders of magnitude. We generated billions in yearly sales with under 30 engineers on staff. It was firefighting daily.
I was holding in more and more stress. It felt natural. Startups were hard. To cope, I reduced my identity outside work. I stopped going out, quit drinking, and deleted social media. I embraced the grind and did not see failure as an option. Over time, I became a more aggravated version of myself. I absorbed more of the aggressive side of the culture at Wish.
Inwardly my emotions became numb. I was disconnected from others emotionally. Outwardly my entire vibe shifted from chill to aggressive. I became more argumentative at home. I was looking to dominate others in my interactions.
It was easy to blame my personality shift on work, and that’s what I did at the time. Years later, looking back, this was when my symptoms started. But for now, the story continues.
I left Wish two and a half years later, burnt out and ready for a break.
I took several months off to recover. I watched a lot of TV while resting on a couch. My visit home for a few months in the quiet suburbs of Victoria, Canada, added to the tranquility. With time, a significant amount of my previous anxiety dissipated. And I felt ready for my next adventure.
Unfortunately, work became a slow linear progression to disaster for the next few years. Within months of starting my next gig, I started feeling distracted and disconnected from the work. It took longer to get things done.
Then joining Pinterest, my distraction became even more pronounced. Although I joined a great team with glowing recommendations from my past colleagues, I soon wasn’t meeting my own or anyone else’s expectations. I found it hard to pay attention. I was a zombie in meetings. I also found it hard to think beyond the immediate present. The anxiety also returned and was getting worse by the day.
My brain got cloudy with persistent brain fog. The anxiety worsened until I felt I wasn’t even present in my body. I later learned this was called depersonalization, a severe form of anxiety where you begin to experience your existence like watching a movie–one where someone else is performing the actions.
At home, I was a tinderbox. I would shout with rage at the slightest provocation. I was looking to dominate. I had reached a stage of mental illness. One that is not aesthetic and talked about to spread awareness. But one where people would avert their eyes. This period was a dark era in my life.
I learned to cope.
I found that my behavior with anxiety was like a racehorse. Although it was easy for me to procrastinate, once I started working on something, I executed projects like I was in a race. I had blinders on and a goal. And I ran as fast as possible as if spurs jabbed me until I got to completion.
I was surviving. But the situation was bleak. How much longer can I keep this up? I asked myself if I would one day lose it and begin a life as a vagrant on the streets–wandering alone and shouting at random passersby.
I talked to doctors about my issues. All they did was give me blood tests, which showed I was healthy. I also worked with a therapist on my anger issues. She gave me tips on de-escalation and was an outlet to vent about what was going on.
But these were all bandaids. And I continued sinking.
I found my first bit of salvation through chance. I purchased air purifiers in preparation for the upcoming wildfire season. And strangely, after I turned one on, my body immediately felt like it was coming out of a deeply relaxing massage. Knots and tension that I didn’t even realize existed began to loosen. I sank into my couch with a feeling of euphoria.
I immediately remembered taking an allergy test a few years before, with positives on grass, trees, and dust mites. Of course, a dust mites allergy was the most likely explanation because I was indoors. I didn’t make the connection to my symptoms before because I had no idea that allergies were anything beyond seasonal sneezing.
I accepted the connection. Over the next few months, I made considerable changes to my environment to accommodate. I changed our carpeting to hardwood floors. I used allergy covers for bedding. I kept the house clean and sterile. And I started taking antihistamines daily.
Each change was a stepwise improvement in my symptoms. My anxiety subsided. I was physically more relaxed. I could concentrate better. But I never reached a full recovery. Ultimately, I still had some anxiety, and my brain was somewhat cloudy. But this was a steady state I could live with, and I declared victory.
As time went on, however, things were still getting worse. This time, however, it wasn’t anxiety but brain fog worsening. I became more zombie-like. Absent. I would lose things constantly. I lost track of everything except the immediate present. I could only focus on one thing at a time. I was experiencing cognitive decline.
Things were bad. I didn’t think I could hold down a job like this. So I was reconsidering my life path and plans for the future. But thankfully for me, I was not doomed and would soon figure out the root cause of all my issues.
For the final diagnosis, I thought I had some form of adult attention deficit disorder. I watched some TikTok shorts on ADD advocates discussing what it was like to have ADD, and many of the symptoms resonated with me. But when talking to a doctor about getting treated, she casually mentioned that poor sleep could also cause ADD symptoms—a phrase that stuck out to me and made more sense than having ADD. So I started researching sleep.
I learned about obstructive sleep apnea and its diagnosis and symptoms. Although I previously knew about it, I thought it was defined by obesity and snoring. I knew you could die from it, but I thought it mainly impacted the heart.
But sleep apnea is a far more complex disease with many symptoms and causes. For example, I didn’t realize that it also impacted the brain–enough to cause brain damage observable in an MRI. And it can occur in a subpopulation of people that don’t snore. And that chronic poor sleep due to airway issues seemed to be linked with countless problems within the body–mental, digestive, reflux, and cardiovascular.
As I did my research, I became convinced I had it. And when I did a take-home sleep test, I was not surprised by the positive result. The test showed I had positional sleep apnea. My apnea-hypopnea index was 19 when laying on my back, meaning I had an average of 19 wake-ups an hour due to lack of breathing, where my blood oxygen levels also dropped below a threshold.
I was beyond excited. The treatment for me was a CPAP machine, a device you use during sleep that blows continuous positive pressure into your nose and mouth. This positive pressure keeps your airway open between inhalation and exhalation, making sure you don’t have an airway collapse and stop breathing. It promised a cure.
But it didn’t work for me. I tried this device for several weeks but always took it off after sleeping with it for an hour or two. I tried on almost every mask available, but it didn’t make a difference.
But I wasn’t discouraged. I knew what was wrong, and there had to be a solution. So researching this further, I learned that there was a subpopulation of sleep apnea called Upper Airway Respiratory Syndrome (UARS). UARS used to be a separate disease but was similar enough to Obstructive Sleep Apnea that the American Academy of Sleep Medicine (AASM) merged the two illnesses under one name. UARS sufferers still have restricted breathing events during sleep that cause disruptions, but these events don’t cause blood oxygen levels to drop. The AASM considers UARS a milder form of sleep apnea, one that is harder to diagnose as it requires a lab sleep study that monitors brain waves with an ECG. But it describes UARS as correlated with younger, thinner patients and nasal congestion.
I was young, fit, and had nasal congestion. The symptoms seem to match. UARS symptoms correlate more with mental distress. Most importantly, UARS sufferers are likely to reject CPAP. The reason for this is unknown, but some specialists believe UARS causes an overactivation of the nervous system and that this overactivation makes UARS suffers likely to reject CPAP as they are too sensitive to the positive pressure.
Although my sleep study showed sleep apnea when lying on my back, I conjectured that I also had UARS while sleeping on my side. So I decided to follow standard UARS treatment guidelines, reduce nasal congestion, and see if things improved.
Just like before, when I learned my dust mite allergy was the cause of my symptoms, I made changes to try to improve my sleep.
I improved my nasal breathing using drugs, devices, and surgery. I used Flonase (Fluticasone), a corticosteroid that reduced inflammation inside the nose. I also used Astepro (Azelasine), a nasal spray antihistamine. On the surgical side, I worked with an otolaryngologist to do a turbinate reduction and septoplasty to surgery open the nasal airway. And I used nasal dilators to physically open the nasal passages.
I started practicing mouth taping during sleep. Mouth taping is controversial as scientific studies do not back it up. But anecdotally, people report a significant improvement in this practice which forces nasal breathing. My own experience reflects this.
I also started positional sleep therapy. I went to sleep wearing a bumper belt that prevented me from sleeping on my back, where my sleep apnea scores were the most severe.
I also explored the connection between sleep apnea and acid reflux. There is a hypothesis that nasal congestion and negative pressure in the breathing passages cause acid reflux from the esophagus. This reflux can come up into the nose and cause increased turbinate inflammation, and make sleep apnea worse. I started using Gaviscon Advance at night and kept my bed at a six-inch incline.
And finally, I started getting allergy shots. These were regular injections twice a week to hopefully desensitize me to my allergies and reduce my nasal congestion permanently.
These changes took place over months of trial and error. But the result was that they worked. My sleep improved, my brain fog miraculously disappeared, and I began functioning normally. My memory returned. And I am back to being curious, eager to learn more about the world and share my learnings with others.
One huge change was my memory. While suffering from sleep apnea, I had almost no long-term memory. I would lose track of relationships and people as quickly as they left the room. But after treatment, my memories returned, and it was almost as if I was reliving the best moment by moment as they resurfaced.
And while I began this story in my mid-20s, talking to sleep specialists, I believe sleep apnea has been a lifelong issue. I’ve had nasal congestion since childhood, and some previous periods of my life mirrored my symptoms–albeit with less intensity. Because of this, I often wonder which aspects of my personality and existence are rooted in this illness. I don’t see this as a purely bad thing–perhaps my latent anxiety gave me the drive to push new boundaries in my field, and being at ease with discomfort gave me countless opportunities both personally, both as a student and subsequently in my early career.
I also wonder if this had impacted the previous major health issue that I overcame in my life, my experience with wrist pain and repetitive strain injury. I had debilitating wrist pain when I was in my early 20s, and I cured it by treating it from a psychosomatic perspective, treating it believing stress to be the root cause. Did I have sleep apnea during this time? Did it contribute to increased stress, creating a physical issue I eventually had to resolve psychologically? I believe today that the answer is yes.
I will end this with some advice for those diagnosing complex chronic issues.
I will first discuss the issues diagnosing this illness and why it took so long to find the root cause. First, sleep apnea has no clear causal relationship with the symptoms that I experienced. Family doctors are limited in their knowledge of sleep apnea and either don’t know or won’t jump to the nuances of the mental symptoms associated with the illness.
General practitioners also are limited in their time with patients. Insurance companies dictate time constraints. In TV and movies, there is often the trope of the overeducated patient that knows “too much” about medicine and tries to overrule doctors. But the reality is that doctors do not have time to root cause you, and you must take ownership of your diagnosis and treatment.
Even specialists, whose time is even more constrained, need help fully educating you. This reality is especially true for a syndrome like illnesses like sleep apnea, which has multiple structural and physiological causes that vary between patients. The lesson is that patients must be highly educated about their issues and seek information from various sources. Patients must also be able to filter information critically, as only some things online are trustworthy and relevant.
One major mistake I made with treatment was using a different doctor every time I went to see one. I use One Medical, which provides higher-end concierge medical services on demand. I am lucky that I can usually see a doctor within a day or two if I want one. However, I typically pick different ones due to scheduling. However, seeing a different doctor every time is terrible for chronic conditions, where you need a relationship with the doctor built and the same person looking at you over time.
One thing I learned about modern medicine is that it mostly looks at groups and treatment in aggregate. Due to funding, most studies lack statistical power to drill down into each subpopulation and causal factors. Doctors use these studies as the source of truth, but these studies are incomplete. Specialists augment this with experience, and the consequence is that not all specialists are created equal and can properly diagnose and treat a patient.
One of the biggest challenges that make chronic illnesses hard to diagnose is that they progress over a long period of time. Because of this, many confounding factors can hide the real issue. In my story, job stress and environment were confounding factors. Leaving Wish, my situation improved, leading me to think my symptoms were purely related to job stress. However, things improved because I moved back home to my family home, which had hardwood floors and was a much better environment for my allergies.
Muscle tension was another confounding factor. I was tense all the time. Treating muscle tension improved my symptoms, but it was only a band-aid.
In addition, allergies were one root cause of my sleep apnea, but it was not the only one. Therefore, I was incorrect in believing that resolving my allergy issues would fully cure me. Ultimately, I needed stricter regimens, other treatments, and surgery.
Even my lifestyle in my early 20s was a confounding issue. Did I party too hard? Did that era of my life alter my brain chemistry in a way that made me irreparably damaged?
I have to root cause complex issues frequently in my work in tech. But root causing self issues requires a high level of disciplined self-analysis. The factors are slow changes over long periods that may interact with each other. It’s a challenging skill. One that I did not have at the beginning of this journey. But one that I developed over many years of trial and error.
Lastly, toughing it out has short-term limits. You can tough out a physical injury. But with chronic illnesses, no matter how much you believe you can hold things together, your emotions will leak and impact everyone around you. Unfortunately, people often tough it out rather than dedicate more time to finding treatment. I hope to advocate for more people to spend time experimenting and doing the difficult work of figuring things out.
Sleep apnea is an illness that massively altered my life. I was surprised to find many others like me online with similar stories, having spent years trying to figure out their issues. Its prevalence and under-diagnosis starkly contrast the gurus and products touted online about improving sleep. I hope to become an advocate for this illness, and thank you for reading my story.