My Current Health and How I'm Dealing With It

I long hesitated to write this blog post, just because there are so many things I want to touch on. But I realised that this post is never going to be perfect and get every nuance across just as it lives in my head. So I'll write it anyway, because else I'll might never write it.

This post is about the hardest challenge happening in my life and how I deal with it. I'm mainly creating this post for myself, to get all those thoughts sorted. But maybe this helps someone else, I don't know.

The Beginning

Where to start... Since having access to a computer, I spend a lot of time in front of it. I started programming probably around 15 years old (I have terrible memory) and soon got into ethical hacking. I remember sitting in high school class, scribbling in my notebook about some projects I made up in my head: New programming languages, small self made ciphers, parts of a never realised hacking themed puzzle game (that I still think about today), network proxy programs (I was really into that) and other CS things but not listening to the actual class. As soon as I got home, I turned on my computer, put on some music and started programming. Those were wonderful days. I was really caught up in my own world. At 16 years, I also really got into running and Taekwondo. I trained twice a week and mostly did running on the other days. In my prime time, I ran about 10km to 40km per week on average. I still vividly remember the first runners high I got. I remember the bridge I crossed over when it kicked in, running above many cars being stuck in traffic, listening to my favourite music on max volume and feeling like I can go on forever. Then I discovered techno, which introduced me to 'serious' music listening. I started to follow artists, dipped into subgenres, and my musical 'personality' really started to take shape and get mature from there on (you'll know what I mean when you experienced it yourself). Not Long after, I shakingly went to my first rave, my whole body being tense in anticipation of how it would all go down: Parking my car in front of the gigantic industrial complex of the Mischanlage (what an unknowingly wonderful first pick), stepping out of my car, wearing my scorpion shirt (I still own that, now the black has turned brown because of the sweat and washing), queuing with all those cool looking, black dressed strangers that were almost exclusively older than me, and finally getting inside. I remember VNNN starting the night, filling this giant concrete room with sounds. Amazing. I danced the whole night. In the morning, I saw the sunrise in the rear mirror of my car. Everything was quiet and I felt amazing. This was my world, spending a lot of time in front of my computer, daydreaming about my little projects and doing a lot of sport (and dancing!) to let out the energy that I naturally carried throughout the day.

I really like to remember this time. It just feels warm and comfortable.

The Pandemic

The final years of high school rolled around for me and my friends. During that time, I began to struggle more and more with headaches. I finished my A Levels during Covid, sadly without prom, because of the lockdown. Eventually, my headaches worsened more and I went to see a doctor. Turns out I had problems with polyps in my paranasal sinuses. I got a nose surgery to to remove the polyps and to straighten my nasal septum. Unfortunately, some germs seemed to have infected my nose after returning from the surgery, so I spend another few days in the hospital, receiving antibiotics. I remember watching the welcoming ceremony of my university from my laptop in the hospital bed.

University!

I always knew I would study cyber security and was finally living the dream. Although I imagined the start to be a lot smoother. Because of the lockdown, I didn't visit the university often in my first two semesters. Finding new friends (I did eventually find some very friendly people) was just as hard as sitting in your room all day. Basically all our lectures were held in a remote fashion. At that time, I wanted to make some money and took a Job in an IT consultant firm. Time really flew during that period of my life. There wasn't really that much besides university (which also included practicing CTF at the online meetings of the local CTF team of my university) and work.

It was at this time, where I started to sleep worse. Nothing serious, but some days were just off and I frequently had thoughts in my head when going to bed. Thoughts about hopefully getting that refreshing sleep so that tomorrow will be better. When the Covid lockdown rules were loosened up, I could visit university more often, which was great. Around that time, Covid hit me the first time. I didn't suffer any severe symptoms, stayed at home for two weeks and was fine afterwards. I got on with my life until almost exactly 6 months later, when it hit me for a second time. Same procedure, I was basically fine after a little over a week.

The fourth semester rolled around and I noticed my sleep problems getting worse. I experienced slight sleep depravation over a longer period for the firs time: Frustration over lack of energy at the daytime and nights filled with thought spirals about finally getting some rest. This felt terrible, but surely it was just a phase. After all, university was getting harder and I set my mind to finishing my bachelor in 6 semesters. In that time, I had way less energy throughout the days, not only mentally, but also physically. Exercise was getting harder, sometimes yawning during training sessions, which just fueled my anger even more. At that time, I could transform this constant anger into movement. Running was still an option, although being a little less fun than it used to be. And then a major turning point happened: I badly wanted to go out and rave on my own to alleviate some of the stress that had build up in the last weeks. Arriving at the location, I noticed being a bit tired, even struggling to dance all the time. After a while, I gave up, sat down on the concrete floor and watched at the clock: 2 AM. Pure Frustration. At that point it became clear to me, that I had to solve this problem.

And so the spiral continued: Getting to and returning from university was getting more and more exhausting, I found it harder and harder to focus on my private projects. Soon, my sleep quality became a hot topic in my family and I recall arguing (sometimes quite harshly) over the volume levels in our house, when trying to sleep (I am naturally a light sleeper and easily irritated by noises when trying to sleep. It was at this time, that it became natural for my family to be louder in the late evening).

Moving

So I decided to move out (volume levels were not the only reason). My two best friends and me rented a shared apartment close to the heart of the city. In that time period, the stress really got me. I was excited but really burnt out at that time and it didn't help that the apartment had really thin walls, with the kids room of our neighbours being directly above me. At least I thought, I am away from home, with some amount of controllable volume levels. I did not know about my worst enemy yet: My own mind.

My days started to change. My head was more occupied with thoughts about getting better sleep, so much so, that I experienced weird, hot flashes. They feel like a really strong, specifically localized, adrenaline rush running from your head all the way to the center of your body. They last about 2 to 5 seconds but sometimes occur in quick succession, especially when being mentally "triggered" (e.g thinking about sleep).

Out of this constant (what I believe to be) adrenaline and cortisol rush, something new developed: Brainfog (for a lack of a better word). Brainfog is a term for a feeling which I'm sure many other people experience but is hard to describe (and sometimes thought to be just being tired, which it is not). It's like your brain runs at a slower rate and does not fully process all of the surrounding stimuli. For me, it feels like a mixture of being sedated and (mentally) hyperactive at the same time, ultimately leading to more confusion, clumsiness and disorientation. The hot flashes where happening more often during daytime but later on also when trying to sleep, which did not help with calming down, as you can imagine. At my worst, I was preparing to sleep with melatonin supplements, teas, breathing excercise, calming room scents and other weird techniques, but as soon as I layed down, the stress and the thoughts came back and the hot flashes began, often keeping me awake until the early morning, leaving my pillow sweaty and my body weak.

I eventually decided that I had to go out of town for a bit and decided to go to Berlin for new years eve.

Berlin

Arriving at my Airbnb, I took a nap and was greeted with a very cute cat :)

Over the next week, I would change my sleep rhythm so that I wake up at aprox. 4 to 7 pm and sleep at 6 to 8 am. The Airbnb turned out to be very quiet and my plan worked much better than I expected, giving me the opportunity to experience the clubs I always wanted to visit in Berlin. By chance, I also met some really nice people which invited me to a new years eve party so I wouldn't spend half of the night queuing in front of Berghain (of course I got bounced when trying to get in after the party on Sunday morning :P)[UPDATE 2024: My dream came true: I got in and it was awesome! :D]. From seeing Cleric live to dancing in RSO until 8:30, many happy memories reside there. In that time, I was able to forget my problems. I recall experiencing way less hot flashes. Maybe this sleep rhythm was the key to my problems? Was I designed to be night active? Looking back, I don't think so. I spent the majority of the day sleeping and regenerating just to have enough energy for the night, which was very fun for a week but not sustainable in the long run (sadly :3).

But eventually, I had to get back home. I was actually afraid to return, even considering to steal the pillow of the Airbnb (I didn't) because another theory I had involved my head position during sleep. Generally, I had many theories regarding my sleep issues that were constantly in my head.

When having problems with something for so long, it becomes your normal modus operandi to drift away and loose yourself in possible explanations for your suffering.

The Trimipramine Saga

As expected after returning home, things did not get better, so I decided to see a Neurologist. At that time, I was convinced that the problem is just inside my head - that I'm trapped in a temporary, albeit pretty long, phase of stress induced insomnia. At the first meeting, he suggested I do behavioral therapy, which I rejected. He then offered me to try a low dosed antidepressant - Trimipramine.

Trimipramine is not your typical SSRI and is actually not widely used to treat depression anymore (afaik). In contrast to SSRI's, Trimipramine is a tricyclic antidepressant, which works by blocking the reuptake of neurotransmitters such as serotonin and norepinephrine (weird!) so they stay active longer. It also blocks histamine receptors, resulting in a sedative effect, without causing any dependence - even after longer periods of use. Holding this tiny bottle in my hands made me absolutely ecstatic. I finally found a weapon against my greatest enemy. This was by far the happiest day in a very long time. Waking up the next morning felt amazing. This high went on for 2 or 3 days until the hot flashes suddenly came back. Was it all placebo?

Maybe I'm going through an adjustment period. I upped the dose and continued to use it. What followed was a time full of uncertainty: Trying out different dosages and developing new theories why the Trimipramine wasn't helping as much as I wanted it to help. Dosing turned out to be an act of walking the fine line between being sedated enough to sleep but not taking too much to affect the next morning. This lead to some weird situations. For example one evening I took my normal dose but just couldn't sleep and decided to go out clubbing. What once gave me joy and stress relief was now a weird experience: Trying to put out some energy but being unable to follow the music because of the sedation. Perception of time also felt very weird and in the blink of an eye, it was 5 AM and I left the club without having really danced.

This situation is a nice analogy for what I'd call the core of my problems: Not being able to physically and mentally work on the things you love, which in turn leads to more stress and mental discomfort.

Constant Positive Airway Pressure

Life went on for a long time like this. In that time, my mental health slowly started to really take a hit, as I stopped doing sport and also gained a bit of weight. The first was due to the increasing fatigue and the second due to stress-eating. There were few days where I would not google my symptoms, trying to find some magic cure that could end my suffering. Thinking back to this time feels unpleasant and makes me sad.

But all the internet research eventually gave me a new lead: Sleep apnea. Sleep apnea is a disease where patients stop breathing at night and wake up. This leads to unrefreshing sleep. The symptoms described by patients were exactly matching mine. I immediately went to a doctor to get my sleep checked. At first, I had a check at home where I wore a sleep tracking device over night. The results were not concerning. However I pressed further and soon got an appointment at a local sleep laboratory. They found that my AHI (Apnea-Hypopnea-Index) was 9.5. This index represents how often breathing stops or is non optimal per hour on average. A value of 9.5 lies within the range for light Sleep apnea which is 5 to 15.

I thought I had finally found a cure. The doctors proceeded to describe me a CPAP device. This device is essentially a mask with an airpump, which you wear at night that supplies a constant pressure of air so your airways don't collapse and your breathing doesn't stop. There are many different type of masks and I was described a full-face one:

Long story short: I tried it 9 months, it was agonizing. I had my usual ups and downs: Times where I thought I was finally cured and times where I couldn't sleep for more than 2 hours at night.

I just couldn't get used to the mask, bought a new model for about 100 EUR, which also didn't help. The mask kept me from turning as freely as I wanted because of the tube going from the mask to the air pump. My skin often itched badly under the rubber material and the amplified breathing noises through the machine were sometimes distracting me. I did keep taking Trimipramine to aid in getting used to the mask but overall, this was horrible. Even when getting 6 or even 8 hours of sleep, I didn't feel refreshed most of the time and after a final call with my doctor, we concluded that Sleep apnea may just not be the cause, because the treatment was not showing results and an AHI of 9.5 is not that unusual. Also, I had my sleep checked a second time and the results came back with an AHI of 2.5. I remember crying after that final call.

Playing Detective

Some rough times passed but of course I did not give up. I vividly remember my doctor telling me: I don't know how to help you anymore. This was the point where I took things into my own hands. The thought that kept me motivated was: There has to be a cause, and even if it is a pure psychological one: There is a logical explanation for my symptoms.

At that time, I discovered obsidian.md, which is a popular, plain-text, cross-platform note taking app, which I still use to this day extensively. I began taking daily notes and started tracking when I go to sleep, when I wake up, how severe my symptoms (brainfog and fatigue) were and I created an overview off all possible diseases that could cause my symptoms, along with evidence in favor and against each one.

As you can imagine, this tracking and researching was quite a time intensive task. The extra work I put into researching, tracking, and constantly thinking about different theories that could explain what I was going through didn't necessarily improve my symptoms (quite the opposite, I think.). Currently, my overview page looks like this:

During this intensive phase, I started to distrust doctors and do research on my own, only consulting a professional when I needed to do a specific test (blood tests, intolerance tests etc.). After a time, all this tracking led me to a new path, but not through analyzing the already tracked data.

The Missing Puzzle Piece

One evening at the time I usually fill out my tracking template, I thought about what else would be worth tracking. In this moment, I probably had to fart, because I just realised I've been ignoring a very present symptom: My excessive bloating and gassing.

I was so obsessed with the whole sleep thing that I completely ignored the problems I had with digestion. I always viewed the sleep and the digestion problems as symptoms of separate causes, but what if they were in fact cause by the same thing? This led me into a completely new rabbit hole: The gut micro biome and how it greatly impacts our health (a quick video about it). I could write a whole blog post about this topic but I'll cut it short: In your gut, there are many different strains of fungi and bacteria that you absolutely need to survive. They thrive on the food you consume and in in turn for living off a portion of your calories, they supply you with the ability to synthesize important molecules, repair your gut inner workings and other fascinating capabilities. The micro biome is far from being fully understood and is one of the bleeding edge research areas in biology and medicine as time of writing. So far, it has even been shown that every persons micro biome may be unique. In addition, certain levels of bacteria strains may be linked to certain diseases. Even further, there is the just as fascinating gut-brain-connection - a bidirectional communication pathway that may greatly impact your mood, appetite, concentration and overall well being.

So, an unbalanced micro biome can have tremendous health impacts. In my case, I first looked at the possibility of a candida fungi overgrowth. This was the first time I decided to change my diet. The candida fungi primarily feeds on sugars, grains, alcohol and dairy. I avoided those foods and noticed a slight improvement in the number of farts per day (Yes, I do track them...). I was very sure I had just found the cure so I took some money into my hands and did a candida test at a commercial testing facility for 50 EUR. The result came back negative. I tried the diet for a few additional weeks anyways, but my symptoms stayed. This was hard to swallow but when doing research yourself, you really have to watch your personal bias. In this case, I was strongly biased towards believing that candida was the cause and it took me (too much) time to realize that I had practically already disproven this thesis (with as much precision as I could of course). So the search went on. After a few other failed attempts like a fructose test and a gastrointestinal endoscopy I discovered the leaky gut syndrome.

Raw Data

Put shortly, leaky gut disorder or leaky gut syndrome describes a range of symptoms like fatigue, brainfog, depression, gastrointestinal issues like constipation etc, and others, believed to be caused by an increased permeability of the gut barrier. The gut has a natural barrier which can open and close dynamically. This barrier is a protective wall between your insides and external compounds floating around in your digestive system. If this barrier is too open for too long, many things bad things (in general called pathogens (anything that makes you sick)) have the chance to enter through the gut barrier into your bloodstream. This causes all kind of bad things like inflammation, induced by your immune system reacting to the unknown. Constant inflammation, especially in combination with stress can in turn influence the gut microbiome to go out of balance (dysbiosis) and cause other unwanted symptoms. One of the gut microbiomes "good bacteria's" tasks is to repair the gut barrier. You see where this vicious cycle leads.

After some time, I did a test for leaky gut. In this test, two proteins are measured. Zonulin, which is the protein that opens the gut barrier and Alpha 1-Antitrypsin (AAT) which in higher levels is an indication for inflammation.

Well, here are the results:

FINALLY! Something that's actually significant! As one can see, both levels exceed the 'normal' levels (those are just set by the testing laboratory. What 'normal' levels mean is a hot topic of debate, but my levels also exceed more strict limits set by other institutions). With this, I was and am quite sure that I do suffer from leaky gut.

Symptom Cause Relationship

I have leaky gut. What do I do now? There are different ways to treat the leaky gut and close the gut barrier again. The best thing one can do currently is to do a diet change to alter the gut microbiome so that more healthy bacteria can grow. The saying "You are what you eat" does carry more truth than you might think. For example, by ingesting lots of added sugars (fructose without appropriate levels of glucose), you are actively feeding the strains of bacteria that love to feed on sugars. To boost the bacteria that are beneficial for my health, I'm now doing a low-FODMAP diet. FODMAP stands for fermentable oligosacharides, disacherides, monosacharides, and polyols. Those are short-chained carbohydrates (sugars) that are not easily digested by your small intestine but rather by certain bacteria strains that produce a lot of gas in the process (hence the excessive farting). As important as the stuff I'm avoiding is the food I try to eat a lot of, because I also try to feed the good bacteria so they may thrive more and repair my gut barrier. This mainly includes lots of fiber and fermented foods that contain a lot of healthy bacteria.

After two weeks, I actually started to see very slight improvements. The ammount of gassing did go down and I generally could concentrate a bit longer and wasn't super tired all the time.

The next question is, why did my microbiome go out of balance? If you google and skim a few publications, the main driving factors are: Stress, Antibiotics, and infection. On top of this, Covid has been shown to cause chaos in the gut [1,2,3]. All of those triggers were very present at once for an extended ammount of time, which I think says enough. You don't get leaky gut just by chance, it's not a dissease in itself but rather a symptom of something being wrong with your overall mental and physical health.

I could go on and talk about the things I've learned about the brain and the gut, like how 70 % of your immune system lives in your small intestine or that research suggests that gut bacteria influence our food cravings and even social behavior, but I'll leave it at that.

How I'm Doing Now

Okay so just follow the diet and get better? Well, sadly, it isn't that easy. I'm now on week 9 on the diet and feel like I've reached a plateau level where my symptoms have improved a bit but I'm still far from healed. The diet can at times be a bit exhausting because it is quite restrictive, which in turn leads to me sometimes having cheat days, especially when I'm mentally unwell. Or I accidentally consume something that I shouldn't have. But even apart from breaking the diet sometimes, I am very strict with it and had long streaks of succeeding (I do additionally consume probiotics to help to introduce more good bacteria btw).

Yet, I feel there is a part in me that won't get fully healed by just the diet. And this leads me to my current thesis about what is going on with me. After excluding many theories through tests, reading research articles on the latest post covid news and tracking my symptoms, my theory is the following:

Antibiotics and Stress laid the foundation for a weak gut and Covid finally brought the system to collapse. After that came a long period of more stress and sleep depravation, induced by the symptoms I developed. This vicious cycle continued for such a long time, that I'm now at this place.

Have I reached a point of no return? I don't think so. I still believe that I'll be fully healed some day.

But of course I'll always work on getting well again, no matter what it takes. My plan for the future is to either count on post covid medications [1,2] or maybe it'll be enough to try to change my gut microbiome throgh Rifaximin and a fecal transplant, if the diet really turns out to not fully cure me. Currently, I'm taking part in a study called 'EXTINCT POST COVID', led by the MHH (Medizinische Hochschule Hanover). I don't know yet if the researchers will choose me as one of 60 subjects but I hope so. If I can participate, I will have the possibility of undergoing a really costly apheresis treatment that is not yet covered by statutory health insurance. Only downside is, that the treatment takes a really long time per session and I have a 50 % chance for being in a placebo group. But I'm definitely gonna take my chances. Also, I've just started taking therapy, which does help on the mental side.

Philosophy and Mindset

Although I went (and still somewhat go) through by far the toughest time of my life, I'd say that I'm mentally at a much better place now than I was when this started. Writing this post was on my mind for a very long time but I always imagined this magical day where I finally get a diagnosis, heal in a month or two and the last thing I'll ever have to do with this is telling my story and then get on with my life and return to my old self.

But I realised that this day may never come or at least lies far in the future. This mindset change was actually a positive one - I've gone from fighting myself to accepting the state that I'm in. I have accepted my health and try to change my life so that it gets easier for me to deal with my symptoms. For example, I've decided to greatly stretch my masters degree to 3 instead of 2 years to chill more and focus on my overall health :) One thing I've learned is: Don't wait for the right moment. Just like waiting for the day I'm cured, postponing living your dream life because you wait for the right moment is a huge waste of time, since this moment might never occur. Sometimes, you have to life more in the moment and not think too much about the future - be thankful for all the great stuff you experience right now.

Very fittingly, Brianna Wiest writes about this in her Book 101 Essays That Will Change The Way You Think in essay 39: You have convinced yourself that life begins as soon as all the conditions are created, but in reality life consists of creating these conditions! (translated by me from German)

Sometimes, hard days still roll around. Days in which I'm so dazed and tired that leaving the house, knowing I have to take the stairs back up when I return, is a real challenge. But on the other hand, there are days where I am better and even able to do sport and meet people. I'm thankful for every single day that goes like this.

For the bad days, I've developed coping strategies that help me deal with the symptoms. As I've mentioned, in the beginning, I was fighting the symptoms. But now, instead of fighting against myself, I try to work in tandem with my body and only do as much as I can, take naps, and plan for pauses.

This was very hard for me at first, as I am a person with many interests but I realised that I can get more done if I focus my energy on single tasks instead of trying to focus on multiple things. Recently, I watched a very good YouTube video called How to Manage Multiple Interests that also touches on this point and I recommend you to watch it if you struggle with the same problem. For me, writing down all my interests, assigning priorities to them, and focusing on getting things done before jumping to the next shiny new thing works well. I can tell you, finally getting things done feels amazing, even more so when done with less energy. But before I drift off (the topic of how to mange your interests and time could be a whole blog post on its own), I'll end it here.

But even with the perfect mindset, life is still shit sometimes, as for everyone. If you are going through a rough time period currently, I want to encourage you to not give up. Listen to your body and your mind and work with them - Not against. I'm trying to get healthy for 2 years now and also haven't given up, and so shouldn't you! Oh and talk to your friends :)