On 20 Years of Poor Sleep

By Kevin, November 22nd, 2021

20 years is a long time.

It's a long time to wait for your favorite band to do a reunion tour, or for a movie you've been waiting to be done properly. For some it can be the length of time completing various educational pursuits, the time it takes to grow a successful business. To see your child go from newborn to college grad.

For me, 20 years was roughly the length of time I had to endure going day to day on very little restful sleep.

It sounds far fetched. Especially if you have no sleep related issues - it can be difficult to understand or empathize with those who do. Yet, I lived with this for two decades. If you have ever gone a day or two on little to no sleep, you probably felt awful. Lethargic. Difficulty in concentration, unable to focus, erratic thoughts and similar issues. Emotional detachment. For people who have sleeping issues, this is a daily struggle for us. I felt this way all the time.

First, please understand that I am not unique in this regard. The CDC estimates that over 70 million Americans are affected by sleep related issues. That is roughly 21% of the population of the United States. Think about that for a second. The population of the state of California is about 40 million - it is a lot of people.

There is a good chance that you could be one of them and don't know it. I didn't know it for over half of my life.

Second, the road that it took me to get answers on this took the better part of 15 years. It isn't something I read an article about one weekend and felt like a subject matter expert on. Far from it. Sleep science is one of the least understood areas of medicine to date. Many experts will agree on some aspects of sleep, but disagree on several more. Meanwhile a large population of the planet suffers from a silent, debilitating and sometimes deadly ailment. The average person is not educated on sleep hygiene at all.

Third - consider this not just a cautionary tale but one of self empowerment. It may have taken me a lifetime to reach this point - I want to save you the time. If you feel tired a lot, that no amount of sleep makes a difference, that you never feel refreshed when waking up - talk to your doctor. If you don't like their assessment (general physicians / family doctors are generally not trained in this), seek referrals to a specialist or another doctor. Be your own advocate. A lot of doctors will misdiagnose or tell you absolutely nothing is wrong. I figured it out - you can too.

Fourth - don't give up the fight. If you are affected by sleep related conditions whether you are aware of it or not, there are no fast answers or simple prescription to make it go away. It will be easy to want to give up and 'deal with it'. Take it from me and anyone else who has been there and back, keep going until you find relief. You will get there.

Lastly and most importantly, have empathy for those who have to deal with it. It's hard enough and they need the same support as you do for the issues you may be going through. This isn't a basic matter of "have some more coffee", "watch less tv", or "just go to bed early". If it were that simple, 70 million people would not be affected. So please, unless you have solid medical advice for someone, don't tell them things like that. It will be a waste of their time.

You may be similar to me. Maybe not. I hope my account helps others find answers, solutions or understanding and that it doesn't take you as many years as it took me to get to this point.

This is the first time I have ever spoken about this in public.

In the Beginning

When I was growing up, I was a firecracker. Whip smart, funny, full of seemingly boundless energy. Voracious reader. I could absorb, understand and retain information with little difficulty. Facts, figures, people, places, faces. I was generally well liked, but no fun to play Trivial Pursuit against if you catch my drift. I kept a catalog of moments, phrases, inside jokes and other details about individuals in my head and could recall them whenever I chose to, even years later, in an effort to make that individual laugh. Making friends laugh came naturally to me as a result.

I could articulate ideas and learn new concepts as needed, even for subjects I had zero interest in. I coasted through math related classes by programming my TI-83 calculator in a dual ability to understand different disciplines of math to a degree in which I could program new applications on my calculator to do the work for me.

It was not uncommon to find me sitting around a bookstore reading various technical materials on programming languages, theory, or certification prep like the old A+ Certifications. These books were huge. Several hundreds of pages. You could ask me anything in these books, chances were I would know the answer or articulate concepts or knowledge I had learned. I just knew things, my mind was a steel trap and technology just came naturally to me. This wasn't the only topic I read. I also would fly through several books on comedy, autobiographies, books on music/albums/musicians. I even read my grandmothers encyclopedias. Yes, the old World Book Encyclopedias. I read them, and I remembered just about everything I read.

This would give me ideas on what I wanted to do in life. Programming is a means of problem solving by applying code to solve tasks. What I do today is no different than what I did way back then - only now my talents solve problems for everyone else instead of for myself. Few get to fall into their career as easy as I did. It didn't really seem like work to me which made it very appealing. I set off down this path.

Changes Appear (2000-2005)

When I got to college, things began to change as a nature of the college lifestyle. It was common to stay up until 3:00 in the morning with class at 8:30 AM. I focused on video games (where I initially thought programming would lead me), going to concerts and generally just enjoying a college-slacker life. I assume most people that age do.

I started to notice I was having a harder time making it through the day and had less energy than I was used to. I chalked this up to just how I was living and figured I would make up for it "tomorrow" by going to bed earlier (than 3 AM). Despite whatever time I chose to go to bed, the result was the same.

Trying to get through the day like this is rough and began impacting every facet of my life. My concentration and focus became very limited. Reading, studying, committing new information to memory became hard. I would forget basic things and have to take more notes. I started losing interest in hobbies like playing guitar. Not only was I lacking the energy to feel like going through with it most times, the impact to my concentration made it so I felt "locked in a box" so to speak. I knew what I knew, and that was all that I knew. Progression ceased. This only accelerated the lack of interest in such hobbies.

It also greatly affected my mood. Sometimes I would be fine, affable. Other times disengaged, dour, aloof. I could have trouble following small talk beyond a few sentences or even care to carry it on. I didn't have the energy. I couldn't think straight. Not much excited me. This would often lead to being misread or judged by others beyond my control. Most things seemed to irritate me. I had trouble remembering birthdays, names, and other information. Sometimes, I couldn't remember what I had eaten for lunch the day before.

I had no control over this. The depth of exhaustion is hard to describe. It makes you not yourself.

At first, I wasn't really sure what was happening. Is this a part of getting older? Did staying up late in college mess up my sleeping patterns? Have I developed a neurological condition that is inhibiting restful sleep? Is it my diet? Am I not getting enough vitamins? Little did I know that this was the start of a journey that would last over the next several years.

Adapting (2005-2014)

Over time, my body learned to compensate for the lack of energy. The human body is remarkably flexible. I would learn to compartmentalize and timebox tasks and activities to how many 'good' hours I knew I had in the day. Usually by 1PM, I would be spent mentally. Some days earlier than that. If I had somewhere to be later that night, I almost certainly needed a nap to 'recharge' - although the effect was marginal at best.

I was starting each day at a disadvantage. Think of it as having to drive 1000 miles every day but starting out with 20 miles worth of gas - and every time you stop to fill up you only put in 5 more. It takes forever to get to where you are going, and when you get there you wake up in the morning to have to start the trip all over again.

There would be dozens of visits and consultations to doctors trying to get to the bottom of this during this period. I also did a handful of overnight sleep studies. These are a real pain in the ass and take a lot of time to complete. Blood tests. Nothing ever turned up. We did just about everything under the sun. MRIs, x-rays, EKGs, anything we could think of to run tests around for any abnormality that could be tied to daily fatigue.

Half of the battle was trying to convince a general physician that it was not depression. I can't fault them, the symptoms are very similar and its just easy for them to tag it with that without further assessment. Second, third, fourth opinions and so on, the assessment was always the same. I refused to believe this. Nine times out of ten they are probably right. I knew that I was the one exception. So I pressed on.

I am a programmer by trade. Occasionally the code that we write will not work the way it was intended to work. We then have to go in, try to reproduce the issue that was reported, recreate the conditions of the bug, then narrow in on the cause and implement a fix. This process is called debugging. It can also be viewed as a systematic review and process of elimination to determine a cause and/or effect.

Doctors and medical professionals often have the same approach diagnosing people. Our bodies are organic computers. The various organs are our sub-systems and programs, the brain our central network, hard drive, and CPU. Humans are also modern miracles of evolution, and like code, not everything or everyone is the same even if reported issues sound the same. So if they were not going to put in the greater effort of figuring out the problem, then I was going to have to.

I began to investigate on my own, the best that I could, the causes of why I felt tired and lethargic most of the time. As one can imagine, this was a slow process to do by myself. I changed my diet several times. I cut sugars, alcohol, caffeine, junk foods. I adjusted sleeping routines. Took all kinds of supplements and vitamins. I read every possible article, comment, or medical study I could get my hands on on the internet in a search for answers. All these roads were a dead end. Nothing helped.

Everything seemed to just slow way down. Reading was very difficult - I could do 5 to 10 pages before nodding off. It wouldn't matter, because committing what I was reading to memory or knowledge wasn't happening for the most part. I would buy books and they would stack up and never get read. Conflict with friends was a near constant occurrence. Working out or running was a start/stop process, I'd be winded in no time. I was simply exhausted. I would yawn a hundred times a day or more, sometimes several in a row.

Headaches were frequent. I would often fall asleep during movies, shows, playing games, at my desk or even during meetings. There were even a few scary instances of falling asleep while driving. I'd even fallen asleep standing up sometimes, or in the garage after parking. I started scaling back any travel, concerts, late nights. I mean, what more could be done?

These years were tough. It was hard to see everyone around me progress at their pursuits and personal lives while I remained stuck in first gear. It was not for lack of drive or lack of trying, lack of goals or effort. The frustration of getting nowhere while others succeeded was clearly visible as I wore that on my sleeve, it was impossible to conceal. Everyone around me simply passed judgement on it being "oh thats just how he is" instead of what I was going through, dismissive of a notion that there was an internal struggle.

Maintaining relationships was not possible. Whether I divulged this info or not did not matter, no one wants to be around someone who is tired and out of it most of the time. I learned to keep this a secret. How does one even explain this anyway? When it is it appropriate to discuss it? Each attempt seemed to coincidentally end each relationship, so I kept it to myself. Not that I can blame them, but it did pile on to the stress of coping with this.

A diagnosis?

The final blow came after having another sleep study performed (you have to do several of these to generate good data over time) where the specialist deemed it inconclusive again and simply diagnosing me with "ideopathic hypersomnia". In laymans terms, it means having excessive daytime fatigue with no identifiable cause. That means they don't know what it is. And if you don't know, you can't treat or cure it.

The thought that I would have to live the next several decades of my life this way was devastating to say the least. I literally slumped in my chair at the news. Several friendships and relationships fell apart that year as I became a walking zombie. At this point I didn't have the energy to care - it took every ounce I had to stay awake and get through the day.

Tired as I was, I was undeterred and would not accept that I am some medical anomaly. I decided some radical changes were necessary. I needed access to better care, better pay, better insurance and better support. Otherwise I would be a prisoner of this for the rest of my life. I needed to get out of Delaware for this.

I quit my job, packed everything up and moved to Boston.

Managing (2015-2020)

I had never lived in a city prior to this. The euphoria of being in a new place at a new job making friends fast definitely helped. I was in a non-toxic work environment with positive support, good colleagues, great pay and mentorship. I had a lot of sights to see, places to eat, and things to do. I didn't have to drive a lot, so I didn't have to worry about that so much - I could go to concerts, events and such that I had previously given up out of fear of nodding off.

I got better at managing around daily fatigue this during this period. There was no choice but to double down and deal with it because this wasn't going away and no specialist date could figure out what was going on. I still had hope that either a detail was overlooked or some new developments or studies would come along to solve it. In the meantime, I was going to have to learn to live with it.

I started back at the beginning and worked through all the same battery of tests that we could do to narrow in on what is causing such extreme fatigue. I spoke with every doctor or specialist willing to listen. I managed a life the best that I could and figured ways of getting myself through to the afternoon - as long as I could do that and then get home I would be okay most days. But it never subsided.

We never found anything new that we didn't already know.

I held most of it at bay the best that I could. But in 2019 a list of stressors and life issues sent me into a downward spiral, unable to deal with all of those things and manage daily exhaustion to boot. This free-fall caused me to lose the progress I made, I was now feeling far worse than I ever had before.

It is impossible to deal with anything in that state. The depths of exhaustion you reach is difficult to explain in words. The desire to sleep is exceptionally strong. You will forego and avoid anything that gets in the way of getting sleep, hoping for moments of rest. It consumes all your thoughts. Combined with constant feeling of brain fog, it seems that it is all you can really think about. Essentially, you don't want to deal with anything - it just becomes too much to bear. Your brains fight or flight response will always choose flight simply because its the "way out" of virtually anything and you don't have the energy anyway otherwise.

I needed immediate relief from everything that was going on. I completely folded and retreated back to Delaware near the end of 2019. This was one of the lowest points of my life - I had to walk away from the most important person I ever met who meant everything to me. The struggle of chronic fatigue and lack of energy or desire to deal with anything caused irreparable collateral damage I never intended. I'll never get over that.

I unpacked and slept through the entire winter.

2020 would be rather unremarkable and honestly I don't remember much of it. I suppose because there wasn't anything to do or anywhere you could go. I think most people would agree that it was not worth remembering with Covid going on. It is mostly a blur. I maintained and focused on my health and rest the best that I could, still pursuing any sort of answer or treatment. I was seriously tired of being tired and losing out on life.

At the end of December it looked like yet another year would come and go. I was on the verge of giving up searching for answers, accepting that the earlier diagnosis may unfortunately be correct - and that there would be no fix or relief to get back to normal.

Its funny how you can chase something for so long that avenues you haven't looked into simply do not occur to you. I was so focused on the same set of symptoms (fatigue, lack of concentration, difficulty focusing, never feeling any energy, etc) that it never once occurred to me to ask my dentist about any of this. So I did.

He informed me that there were minor signs that I grind my teeth. I've don't do this while awake, so I assume this happens in my sleep. From this, I formed a possible hypothesis - could grinding your teeth in your sleep, even in mild cases, cause restless sleep? What if the movements and muscle activity was sending signals to the brain and preventing me from reaching deep sleep?

I would soon have the answer.

Finally Awake (2021)

The proposed solution was to wear a protector while I sleep to prevent the damage grinding your teeth can cause. The cost of it would be around $800. Before I committed to this, I wanted to first just try out the idea without spending so much money. It would be a shame to drop that cash and have no effect at all. I wasn't so much concerned with the grinding (since it was purportedly mild) - I wanted to validate my theory above.

These days you can find several of such devices available as over-the-counter home remedies on places like Amazon. The difference is it is not an exact custom fit so results can vary, but for $20 I thought it would be worth giving it a shot just to see what happens before going all in on a custom made one. However, due to a simple miscommunication with my dentist, I wound up buying the wrong thing.

This would turn out to be one of those "happy little accidents", as the venerable Bob Ross would say.

I bought something more akin to a retainer. The key difference from the suggested protector was this fit both rows of teeth and moved the jaw forward by 2 millimeters while I sleep. 2 millimeters is very small, about the width of the point of a crayon. My original hypothesis was not correct but indeed in the right ballpark, because this changed my entire life overnight.

I'll spare you the technical medical details about how the human jaw has been devolving over the last 15,000 years, how jaw shrinkage contributors to numerous health ailments and how that causes people (like myself) to unwittingly have smaller airways and breathe through their mouth. I will share plenty of reading material at the end of this post - most of this information I just learned this year.

Check out this clip of James Nestor (author of the book "Breath") summarizing the above and what it causes to a person:

To explain it at a very high level, my airway is too small because my jaw is underdeveloped. This means I was not getting enough oxygen during sleep, preventing any deep restful sleep and caused all the aforementioned issues as a result. A normal persons oxygen saturation level should be 96% or higher - mine was around 85% which is extremely dangerous. Any lower than that would most certainly be fatal. I only wish I was aware of it a lot sooner.

Now after 20 years... I can finally rest at night.

I no longer have the stress of daily exhaustion and all the negative effects that causes. Since this summer I have been working with proper specialist upstate who affirmed the root cause and my beliefs. We are working on a permanent fix so that this cannot happen to me again.

A colossal weight is finally lifted - I am back.

A Return

To give you an idea of just how much of a transformation this was for me, here are just some of the things that have changed:

I don't need multiple cups of coffee to make it through the day.
I can run and workout without getting as winded and exhausted.
I'm not mentally spent by noon.
I can read without nodding off after a few pages - I can read whole books now in a day or two.
My ability to speed read has returned.
I don't nod off anymore.
I no longer feel any need to nap at all.
I've dreamed every night (deepest stage of REM) - something I hadn't done for years.
I can drive all day long and not feel tired.
I no longer yawn 100 times a day. 2 to 3 at most.
I no longer get headaches.
I have total concentration and focus in anything I do.
I wake up ready to go every morning. No grogginess or fatigue.
I am far more articulate and conversational, my written and verbal communication is a world beyond what it used to be.
I feel zero stress and can calmly handle just about anything without losing my cool.
I am more engaged, present, and energetic. Apathy has been replaced with empathy.
I've resumed passions, like playing guitar again. I can now follow the lesson books that I could not do before.
I can read, understand and process information an order of magnitude faster.
No more anxiety about anything.
Dark circles under my eyes have basically vanished.
I am fearless and have complete confidence.

I could go on and on and on honestly. Since the full sleep cycle is now able to complete and go undisturbed, my memory is a lot better. I am able to learn quickly and commit knowledge because of the benefits of deep sleep. New traits present themselves all the time. For example, I can sing and play guitar at the same time now out of the blue. I can't carry a tune at all but the fact I can do those two activities together is something I simply could not do before no matter how hard I tried. My brain no longer gets stuck or blocked - I can do several tasks simultaneously without hitting a mental wall.

Final Thoughts

I am 1 in 70 million. I'm also lucky. Physically, I've come out of this on the other side intact. It could have been much worse. I could have chose to ignore this like so many and been a miserable zombie forever. There is triumph here in my stubbornness and relentless pursuit of an answer.

Don't get me wrong - I've had a good life, been a party to several unique experiences and opportunities, built a solid career and met a lot of great people. I've even escaped death on a few occasions.

I can't ignore the totality of the damage this has done though - the lost friends, missed/botched opportunities, the ruined relationships. All outside of my control yet unfortunately a witness to, as odd as that sounds. I wasn't myself. It's also hard to ignore the futures or life that could have been, if only this never happened. It would be easy to spend all my time looking back and calculating every possible outcome and result that could have been, where I'd be now. Would I be successful? Who would I be? Where would I be? I unfortunately will never know. I can't change the past. It's unfair, yet happened all the same.

Regardless, I am in the drivers seat now. The future is mine to make it exactly what I want it to be.