self.watch

Howdy folks. Today I'll be discussing my frustrating, convoluted experience attempting to find medical help for my illness up to the point where I filed for disability.

When my symptoms first began, I genuinely thought I had some weird form of head cold which would clear up within a week or so. I didn't seek out any kind of medical treatment for the first few days and I really regret it. When I realized I was dealing with something serious, I figured I'd go straight to neurology and called up a local hospital system. Unfortunately, self-referrals to neurology were booked up for several months. It wasn't until the second or third week after onset that I finally saw my GP and told him what I was going through. He luckily took my case extremely seriously and made urgent referrals to endocrinology and neurology, although these still came with month-minimum delays.

I did get a baseline set of labs done which didn't show anything out of the ordinary aside from a slightly elevated TSH of 6.3, which had increased from my two-months-prior TSH of 4.8. I have a history of thyroid issues and I'll provide additional context in a later post.

The first 'specialist' doctor I saw was an ordinary optometrist. My eye strain had gotten severe and was making my work extremely difficult, and I was hopeful there was some kind of underlying physical cause that could be remedied. My floaters also made me concerned I could have an eye-related issue like post-vitreous detachment. I was actually hopeful I would have an astigmatism which would explain my double vision and starbursts around lights. Unfortunately, the doctor found no such issues with my eyes. She in fact commented on the excellent health of my eyes, and attributed my symptoms to 'eye strain' (which to be fair, I definitely was experiencing). She prescribed me a nice set of blue-light blocking glasses which actually did end up making my work more tolerable, at least for a while.

With the help of my girlfriend I managed to be seen by a local private-practice neurologist roughly a month after my symptoms began. Again, I was lucky to immediately be taken seriously; I've since learned that there is a lot of sexism and condescention in the medical field in complex case presentations. I was referred for multiple inflammatory marker labs and an MRI + MRA, which I had done as soon as the referred hospital had an opening. I received my results a week later... all negative. The med-speak for my MRI was 'unremarkable,' essentially implying my brain was in pristine physical shape. At this point I was expecting evidence of a stroke, tumor, or MS, so I was relieved.

My neurologist had me complete a few additional labs to scan for markers of a few rare neurological diseases with similar symptomology, these came back negative as well. Around this time I also sat down with the neurologist my GP referred me to, but he completely dismissed my condition as 'complex migraines.'

The short period of dealing with my illness had given me a crash course in medical terminology and professions. I realized that I needed to see an opthalmologist to rule out any diseases of my eye, and also perhaps receive a diagosis of 'visual snow syndrome.' I managed to secure an appointment with a local opthalmologist with a short wait. The appointment went quite like my others, with no significant findings and a suggestion that I seek help from another specialist.

Endocrinology was up next. A new set of labs showed that my TSH was mostly unchanged at around 6.8, and also highlighted an abormally-high DHEA (an androgen which is a precursor to testosterone), although this was dismissed as inconsequential. I was put on 75 mcg of levothyroxine, the generic form of Synthroid (a T4 supplementing prescription). I'll fast-forward here and say this was a massive mistake. For the next month I began suffering from something I dubbed 'doom anxiety' which became nearly debilitating (and I'll touch on more in a future post). Cessation of the drug with my doctor's consent a month later eliminated the anxiety.

The next specialist I saw was an ENT. I had read about certain breathing disorders (specifically upper airway restriction syndrome, or UARS) causing similar symptoms to mine. My ENT was very knowledgeable and took my case seriously. Although he pushed back against the UARS hypothesis, he did note that I have a severely deviated septum and that I certainly could be having breathing troubles as a result. He recommended I return for a CT scan of my sinuses, which I am actually scheduled to receive next week.

When I wasn't getting immediate answers by the traditional medical establishment I began chasing down a few rabbit holes I found in my own research. A large online community staunchly believes many neurological issues are the result of a misaligned neck, perhaps due to an injury or simply bad posture. There's a specialized field of chiropractic therapy that focuses on the upper cervical spine, specifically the mystical 'atlas' vertebra. Supposedly the slighest correction of this bone can cure many undiagnosed neurological issues. Specialists in the 'NUCCA' or 'Blair' technique have established themselves as the wizards of this domain.

While I didn't pursue treatment from one of these 'atlas specialists,' I did seek out a chiropractic physician to evaluate my neck and ensure there weren't any red flags that could lead to my symptoms. I found an excellent chiropractor who ran a set of X-rays on day one and referred me to get a complete neck MRI. I was used to it at this point, but the results came back all clear, aside from some slight postural issues I probably developed from spending too many hours hunched over in front of a computer screen.

Lyme disease is a true enigma. This seemingly arbitrary disease carries a massive community of confimed and suspected sufferers. It has become something of a catch-all for unexplained chronic illnesses, especially with neurological symptoms. After reading some stories of Lyme victims that seemed similar to mine, I decided to dive in head first. Given the confusion surrounding the disease, the Lyme community suggests you see a 'Lyme-Literate Medical Doctor' or LLMD for a diagnosis, which is essentially a doctor who has been trained in all-things-Lyme and certified by ILADS.

I found a Lyme-literate naturopath who was able to see me next-day for a telehealth appointment. After walking her through my case she claimed I was a "textbook Lymie" and referred me to get a thorough set of labs done by LabCorp, and an additional set of specialized Lyme and general neuroinflammation labs by a provider called Vibrant Wellness (which were out of insurance and cost me a fortune). The LabCorp test was a negative for Lyme, showing only two out of the minimum five bands required for a clinical Lyme diagnosis according to the CDC. The Vibrant test results were a bit more interesting, showing enough bands to be considered a positive case by the so-called 'alternate' criteria.

These results were enough for my naturopath and she referred me to a physician experienced in antibiotic treatment for Lyme patients. I started on 200 mg of doxycycline daily for roughly a month. I can't say I saw any improvements, and during this time I grew rather disillusioned of the Lyme hypothesis. I may have had Lyme at some point and I can't prove it didn't somehow contribute to my symptom onset, but at this point I'm unconvinced.

I should also note the results of my 'neural zoomer' results I received from Vibrant Wellness. While most everything came back negative, there was a single marker which was off the charts; my anti-S100b antibodies. This is an ambiguous indicator and can't diagnois anything specific, but does tend to suggest a form of blood-brain barrier disruption and is commonly seen after head injury.

At this point my family and I began attempting to treat my illness as a form of brain injury. I was seen by a neurologist at a renowned concussion clinic who performed an abundance of tests, determining my visual and vestibular abilities. Most of the results came back clear, aside from deficient depth perception, and well above-average balance in the presence of visual distractions. This is classified as 'visual dependence' and is actually not entirely positive, it suggested that my brain was weighing my vision far too much to stable myself, rather than using my inner ear.

In my sit-down with my neurologist I did my best to walk him through my symptoms, but I had a hard time putting into words just how severe and debilitating my condition had become. The doctor gave me a diagnosis he claimed to see often in post-concussion patients, something called PPPD or Persistent Postural-Perceptual Dizziness. While I didn't see how this diagnosis could account for the bulk of my symptoms, it did explain my visual hypersensitivity and general dizziness. Having a diagnosis at all was also validating.

Following the PPPD diagnosis, I sought out a doctor experienced in these cases. I managed to find an otoneurologist located near me who had done extensive research in PPPD and its differential diagnoses. He performed an extensive set of vestibular tests and listened carefully to my story. Although he wasn't able to identify any specific indicators in his testing, he helped me narrow down my rather nonspecific PPPD diagnosis to 'visual vertigo,' and also noted 'suspected visual snow' in his report. He suggested I see a neuro-ophthalmologist for an official 'visual snow syndrome' diagnosis and neuro-optometry for rehabilitation therapies.

As someone with no prior history of serious health issues, being thrown in head-first and passed from specialist to specialist was nothing short of overwhelming. I had friends and family with complex illnesses, but you somehow never really picture yourself having to go through something similar until it happens to you. I found it takes a great deal of patience but also determination to keep up with your health and advocate for yourself in the faces of dismissive or unconvinced doctors.

This concludes today's post. Up next I'm planning on adding a little more color to my personal health background and my thoughts on the potential causes of my injury.

Until next time,

Hi readers. It's been a minute!

I've been meaning to make a post documenting my experience over the first few months as my symptoms developed. I considered combining this post with the medical treatments I sought, but in order to not complicate things too much I've decided to separate that out into a future article. This post will focus on my physical and cognitive issues as they developed. Get excited!

My first week after my symptoms developed I spent trying to live as normally as I could, while also attempting to determine what exactly had happened and what had changed in my brain. I was not dealing with a great deal of symptoms at this time, but there were several things I noticed:

• Everything seemed too bright. Not in a typical 'photophobia'-like eye pain way, more like my head just couldn't really process all the light correctly.
• My vision seemed blurry and faded. Kind of like the contrast had been muted.
• Although there wasn't anything actually wrong with my peripheral vision, it seemed like my brain could now only really process a small fraction of my field of view. I remember it being apparent when looking at someone's face or watching TV; it was like I no longer could 'take everything in' the same way.
• Icepick headaches. Never had any kind of headaches before, but these were brutal; whenever I was in front of a screen, I'd have sporadic 2-3 second headaches (usually on my temples) that felt like someone was taking a dagger to my head.
• Tinnitus. Constant slight ringing in both ears that luckily was only noticeable when my surroundings were quiet. I'd have random flare-ups when using screens, though, where one ear would begin ringing extremely loudly and then remain muted for a few hours afterwards.
• Ghosting. I didn't know the term at the time, but I noticed that lights over a dark background (i.e. dark mode text) seemed to be doubled, with a ghost image just over the original. Almost like an astigmatism.
• Screen intolerance. Screens had gone from being my best friends to my worst enemies overnight. All screens, but specifically my phone, seemed extremely uncomfortable to look at and made it hard to concentrate. This also affected my ability to read, which I will reserve an entire other blog post to discuss.

On top of all these physical symptoms, I also was left with a strange sensation in my head that I best describe as feeling 'feverish' without the fever. Kind of like the fogged, sickly haze you feel when you're in bed with a high fever.

Psychologically, there were a few things I noticed. I felt this great sense of 'overwhelm' at basically any task I performed. In the beginning I thought it must be that my cognitive abilities had somehow been compromised; I'm not sure that's the case, in retrospect I think my stress tolerance had just been cut down to a miniscule level. It was frustrating, but also strange and foreign, since I had always been laid-back and stoic during stressful times. I also noticed that dusk would consistently bring about strong feelings of doom and despair. I distinctively remember one night -- I believe it was the Tuesday of my first week of symptoms -- when it just felt like my world was somehow over. This was entirely illogical; it had been just four days. The feeling was overwhelming, though, and proved to be somewhat predictive.

Despite this mysterious sudden onslaught of symptoms, I was able to work a productive week in the office, proving to myself that whatever happened clearly hadn't seriously eroded my abilities, which was my initial concern. The work was certainly more difficult though, primarily due to my distracting symptoms and issues with screens (I had four 4K displays at my desk). I also noticed that I was completely mentally exhausted each day coming home from work. Every day that week I came home with terrible eye strain and tension headaches. In bed at 9 PM became my new normal.

I recall feeling a good bit better on Friday. The symptoms were still present, but I was able to tune them out quite effectively and felt motivated and focused at work. That night I went out with friends and explored some of the Chicago bars I had been meaning to see. Too many beers and mixed drinks later I woke up Saturday feeling absolutely terrible. This was the beginning of a pattern I noticed: alcohol seemed to make my symptoms a great deal worse, especially the next day. Regardless, I decided enough was enough and booked a flight back to my hometown to be with my girlfriend and family.

My symptoms took a turn for the worst this week. I'm not sure if it was the alcohol or just happenstance, but the change was drastic. I spent the week working from my girlfriend's apartment, fighting through my symptoms. Some of the new things I noticed:

• My vision had become a bit 'blurry' -- everything seemed a bit out of focus and slightly distorted.
• Everything seemed 'noisy' and fuzzy. I remember staring at the celiing and seeing this pulsating graininess. Everything seemed to be vibrating slightly.
• I began seeing random flashes of light in my central and peripheral vision. Little white and black sparks, as well as bigger blue flashes, without any clear cause.
• Started noticing halos and big colorful starbursts around lights. I always had perfect vision and excellent night vision, now it was difficult to walk outside in the evening due to the street lamps and car headlights.
• I had suddenly developed a massive cluster of floaters in my central vision. I had never experienced these before, and I was now easily seeing 100 or more when outside or looking at a bright background.

I recall visiting my family the following weekend and noticing how surreal and different it felt inside my childhood home. Everything seemed foreign; the colors were off, everything was grainy, the lights were too bright... in the moment it was rather terrifying. I remember my parents' faces being dark with this weird overlay, almost like light falling rain. This was the first of my experiences of familiar environments suddenly appearing different through my altered perception. Each time took a similarly depressing toll on my mental health.

I should also note a strange experience I had about two weeks into my symptoms while I was staying with my girlfriend. One morning at around 6 AM I awoke to severe abdominal pain localized in a specific spot on my left side, just beneath my ribcage. I wasn't a stranger to stomach issues, having many allergies as a child, but this by far the most intense pain I had felt, probably a 9/10 on the pain scale. For an hour and a half I was essentially curled into a fetal position hoping for it to pass, but it only seemed to worsen. I was getting ready to call an Uber to a local urgent care when I shifted my body and the pain entirely vanished within a few seconds. I'm still not sure what happened nor if it was related, but it was a scary experience nonetheless.

The following month I experienced an increase in severity of my symptoms, as well as a few new ones, while I continued to power through work. I tried my best to live my life like normal but it had become extremely difficult. Overstimulation made travel, exploring and socializing difficult. I recall waking up one morning and seeing an intense layer of static on the ceiling, like from an old TV set. After some research I realized I had developed the complete 'Visual Snow Syndrome' disease presentation. One other scary moment comes to mind; on a picnic with my girlfriend, I remember looking up to the sky and seeing it flickering between blue and bright pink. I rubbed my eyes and after reopening them this mass of bright sparkles spread across my visual field. It was surreal and pretty damn scary.

A quick summary of my symptom changes:

• My tinnitus had become louder and always noticeable. Rather than a typical ringing it sounded more like hissing or television static.
• Always-present overlay of static in my vision, especially noticeable at night time.
• Strange blue light patterns when in total darkness or with my eyes closed. Kind of like moving blobs of blue static. Not exactly a problematic symptom, but strange nonetheless.
• Severe difficulty reading. While at first this was only an issue with screens, I was now beginning to have trouble reading books, magazines, even billboards and food labels.

From July onwards I continued to deteriorate. My girlfriend and I planned a week-long vacation to Seattle to visit friends and escape to nature. The trip ended up being somewhat of a nightmare. Despite Seattle being one of my favorite places, my changed perception and overstimulation left me constantly feeling on edge. We booked a cabin in a beautiful forest a few hours out of the city, and I remember nearly going into a full panic after watching the trees sway in the wind. I recall this being a pivotal point where I recognized something was seriously wrong.

I somehow managed to continue contributing at work and delivering at a high level despite my condition. My photosensitivity had become rather severe and dealing with the bright fluorescent lights and my monitors was tortuous. I felt dizzy all the time; not off-balance per-se, but as if my eyes and brain weren't properly connected. It became difficult to walk at one point; my legs constantly felt off-balance and as if I were swaying on a boat. I began experiencing severe head pressure which would spike as soon as I'd wake up. My vision had become so blurred and distorted my dreams had become more realistic than real-life. My brain wasn't able to process peoples' faces properly; this was a strange, surreal pheonomenon, but my coworkers faces seemed distorted and artifically blurred when I'd look at them.

In October I went on a recruiting trip with my company back to my hometown. On paper the trip should have been great; five-star hotel, nice dinner, fancy drinks, get to catch up with friends. Despite only having a few drinks, the next morning I recall waking up and noticing my vision was literally dimmer; like everything was a solid 50% darker. I was anxious as hell going through the airport and hearly had a panic attack once I was on my flight.

I realized this wasn't going to get any better on its own, especially while I tried to balance work at the same time. I caved and filed for short-term disability in November.

There's a lot more to unpack here, including the psychological side of my downward spiral, the treatments I tried, and background on what could have caused my illness. I'll get to these in future posts, hopefully soon.

Hello again. I thought I'd write a little about the onset of my symptoms and how I navigated the day this all began. I'll dive into potential causes and treatments in future posts; this will read more as a narrative.

On May 13th, 2021, I had a very ordinary day. At the time I was living alone in my apartment and still getting warmed up to living in the city I'd moved to for work. The pandemic had made it difficult to explore and make friends, but I had developed a solid schedule and did my best to fend off loneliness by keeping up with my hobbies and engaging with coworkers.

Work was stressful, but exciting. I was new to my team and still learning a great deal every day. There wasn't much of a 'ramp-up' period; in the ~6 months leading up to the day I had already taken on what I'd consider significant responsibility. I was on a 'flex' schedule, working some days in the office and some days from home. There were pros and cons to each; I enjoyed spending face-to-face time with my colleagues, but I've always found it comforting to work from the quiet of my own space. This Thursday was one of my more productive days in the office. I was finally getting through the bulk of some difficult projects, and with it, getting a better picture of where I would fit on on my team. I must emphasize; I love my job.

Getting back to my place, I video chatted with my family and girlfriend (living in a different city at the time), had a solid workout, ordered Chipotle and started watched a few episodes of Suits, which I had just started. I've always had something of an obscure obsession with oldies jazz vocalists, and I went down a little rabbit hole looking to see if I could get in contact with one of my favorite crooners from the 50's who still happened to be active. To no avail, I got ready for bed and studied a bit from a textbook I was making my way through to learn more for my job. I passed out before I had a chance to close it.

Woke up needing to take a leak. As soon as I got out of bed I felt this massive head rush. Almost like water was rushing directly through my brain. A bit disoriented and dizzy, I went to the bathroom and went back to sleep, figuring it was nothing. I'm still not sure if this had anything to do with my symptom onset, but I wouldn't be surprised.

Another day another dollar! I was working from home on Fridays so no need to be up too early. Checked the news, texted my girlfriend, got dressed and freshened up. My apartment was a corner unit on a high floor with a gorgeous view of the city; the light in the morning was always a beautiful and motivating way to wake up.

Except today.

Something was wrong. Everything seemed too bright. It started off as an uneasy feeling, but soon cascaded into pure, absolute terror.

I had a panic attack once before; I was 17 and taking the SAT for the first time. I remembered the adrenaline rush and visual white-out I had experienced for a little less than a minute during the second math section, purely brought on by my self-pressure to get a perfect score. This was different.

The feeling of doom that washed over me was undescribable. It was all-consuming and surreal. I remember feeling the desperate need to escape, but from what? My own head? It didn't feel like I was causing these feelings myself, it felt like something terrible had taken hold of my brain and I was held captive. The feeling persisted for hours. I lied on the floor and tried to control my breathing, and while it soothed the physical response, my brain was still compromised. The feeling was so intense I nearly lunged for a window to make it stop. I lived 23 years anxiety and depression free. I was the biggest optimist I knew; I wanted to live forever. What was happening to me?

"Must be stress or something." Despite my head still spinning in a frenzy, with deadlines to meet, I powered through and made my routine cup of coffee. Powering on my computer, I knew something was wrong. Although nearly impossible to explain, the light from my monitor appeared 'different.' No longer easy to focus on, the familiar display seemed aggressive and uncomfortable. My focal point had narrowed to the point where I could only really see a single word at a time. Yeah - I was scared. I figured it was residual adrenaline from my previous 'experience' and brushed it off.

That evening I picked up my girlfriend from the train station and we grabbed dinner. Despite being eight hours since my symptoms began, I was living in a different world. Everything seemed way too bright and greyed out, but almost 'dim' at the same time. I wasn't able to process my girlfriend's face properly; she seemed shadowy and muted. Although not the best decision in retrospect, my intelligent, well-thought-out solution to this medical mystery was to drink a bit too much sangria. For reasons I don't quite understand, it worked. I felt better, and woke up feeling surprisingly normal.

I spent the next day exploring the city with some local friends. It wasn't until I returned home when the feelings returned. As if a switch had been flipped, the room started to shimmer and shake and I began to go faint. I felt a sharp shooting pain on my right temple and excused myself to the restroom. The rest of my evening I spent disoriented, overwhelmed, and scared. The next morning, it seemed the feelings had stuck. It was the beginning of my journey. I don't know why, but I had this deep gut sense that I was in for a rough time... that this wouldn't be an overnight recovery. I couldn't have been more right.

Hi! It's great to meet you.

During late spring of 2021 I suffered a neurological injury which has left me with a frustrating collection of cognitive, visual, and psychological issues which I have been battling ever since. At the time of writing (02/18/2022) it has been just over nine months post-injury, and I am still far from 'recovery' -- although it is hard to define exactly what that word means at this point.

Prior to my injury I was happy, healthy, and lived an incredibly fulfilling life. Although I have made great strides with time and treatment, my symptoms and triggers have taken a large toll on me, and at times the resulting limitations leave my world feeling suffocatingly small. You never think something like this would happen to you, and acceptance has been extremely difficult for me to process.

I intend for this blog to be many things: an creative and cathartic outlet, a personal safe space, and a way to document my progress. More than anything I hope it will help me reclaim my identity. What qualities and traits exactly that identity possesses are to be determined.

On future posts I will detail my current symptoms, treatments, and coping strategies. I'm planning on writing a brief history on my symptom onset and progression to-date. I'll likely also write a great deal of random, stream-of-consciousness posts as I deal with my day-to-day thoughts.

That's all for now, more to come soon. Signing off,