Hi everyone! I thought I'd use today's post to document the treatments I'm currently pursuing and which accomodations I've found to be the most effective. If you're suffering from a condition similar to mine, hopefully you'll find this post useful.
Past Treatments
I've tried way too many treatments to list here. I mentioned many of them in the posts discussing my story. I can't say I saw many significant successes. Visual therapy improved my depth perception (which was pretty terrible before this began, to be fair) and CognitiveFX slightly helped my concentration.
I do think that some of the medications I was taking (specifically Emoxypine and Bacopa Monnieri) might have been part of the reason why my visual acuity increased and the dissociative blurriness faded. Lamictal helped with my anxiety but left me feeling dull and depressed, and might have worsened my visual snow. I tried many other supplements as well and didn't see any noticeable results.
Current Treatments
When I first went on medical leave, I overwhelmed myself and my calendar with medical treatments and specialist appointments. While finding a good team was important, I realized that traveling every week to seek therapies from multiple specialists was not sustainable. I've narrowed down my treatment regimen and I'm undergoing just a few forms of therapy, all local to me.
Firstly, I'm under the wing of an experienced neuro-optometrist who has prescibed me a pair of lenses which are specialized to manipulate my peripheral vision in a way that leaves me feeling less overwhelmed. Over time, the goal is to keep adjusting the lenses in order to nudge the way my brain percieves the world back to 'normal.' I was skeptical at first, but I've found that I can't go without my glasses anymore, and they made navigating indoors (and even outdoors) far more easy.
Secondly, I see a local functional neurologist three times a week who has me cycling a set of therapies geared at TBI recovery. The doctor's treatments cover a wide range of issues, including vision and vestibular deficits, sympathetic nervous system hyperactivity, and concussion-related focus and concentration issues. Below are some of the central therapies I'm undergoing:
- TMS. Transcranial magnetic stimulation involves projecting an electromagnetic field at a certain frequency on a specific part of the brain. This is still a relatively new practice and research is rapidly expanding, but recent studies have shown its potential in treatment of depression, anxiety, and even more nuanced psychological conditions such as OCD or dissociative disorders.
- Neurofeedback. This involves the use of an EEG to quantify the 'efficiency' of certain neural pathways, and an activity which uses this information to help guide the brain towards optimal behavior. In my case, the EEG is read by a computer program which 'scores' my neural activity while I watch TV, and the screen will become dimmer or brighter based on it. From what I understand, the brain is incentivized to keep the screen bright as blue light releases dopamine, so without any conscious effort I'm essentially retraining my brain.
- Sensory integration. This involves performing certain activities or movements to the beat of a metronome. While it might sound simple, I found this therapy to be very challenging at first. I've also seen consistent improvement in my abilities overtime.
- Vestibular training. My doctor owns an advanced piece of equipment featuring a chair that can rotate freely on any axis. We use this to train my vestibular ocular reflex (VOR) through a set of exercises.
This wasn't something I documented on my blog previously, but I had a great deal of trouble sleeping after my injury; although I could fall alseep fine, I'd have a lot of trouble staying asleep and would end up waking up many times during the night. I'm now mostly back to my old healthy sleeping habits, and I attribute this to my functional neurologist's therapies.
On another note, I'm currently taking the following medications:
- Klonopin (0.5 mg). I can't recommend taking benzodiazepines regularly to everyone, but the small dose I'm taking has helped my anxiety and physical symptoms a great deal. It doesn't have an effect on the cognitive or visual symptoms, but does help overstimulation and feelings of overwhelm enough to make it worth it to me.
- Fluoxetine (1 mg). I had bad experiences trying Lexapro and Zoloft at fully prescribed doses, but after some research I found that fluoxetine (Prozac) has a potent calming effect even at small fractions of normally prescribed doses. I take roughly 1 mg per day and I've definitely noticed small improvements in my mood and stress tolerance.
- Omega-3 Fish Oil. This should be in your supplement stack no matter your health. I haven't felt benefits I can attribute directly to this but plentiful research points to the benefits of omega-3s for your brain and body.
- Magnesium. I mix a powder of magnesium citrate into a glass of lemon water every morning. It seems to lessen the feelings of head pressure I get from visual oversimulation.
- Melatonin. I take 3-6 mg every night before bed. Melatonin has done a wonderful job getting my sleep schedule back on track.
Aside from the therapies and medications, here are some activities I recommend that have helped me:
- Exercise. Whether it be walking, running, lifting, or yoga, exercise is essential to maintaining a positive attitude and to avoid falling into a slump. It's also perhaps the most effective tool in treating brain injuries. I make an effort to exercise every day, no matter the medium, and always notice a drop-off in my mood on days where I skip my workout.
- Meditation. Don't get the wrong idea, meditation will not miraculously cure a neurological disorder or injury, especially of my severity. Meditation also doesn't need to be sitting with your legs crossed and hands curled upwards, reaching some kind of enlightenment. I found that simply finding an activity that serves as a quick 'reset' and grounds me is an essential tool in coping with my symptoms. For me, I like to lie down or sit against a wall and close my eyes, focusing on my breathing or the noises around me. If I make it just five minutes I always feel refreshed and a drop-off in physical symptoms related to overstimulation.
- Intermittent fasting. I'm not sure what the science is behind this, but I consistently feel best when I'm in a routine of eating a single meal a day. I've never been a big eater to begin with and have followed this 'diet' incidentally for most of my adult life, but I've found it to have a positive effect on my symptoms and mood.
- Support group. You don't need a ton of people for this one -- even one person will suffice -- but having someone to vent to who geuinely understands how hard it is to face these symptoms is essential. Therapy can be useful and effective to control and prevent negative thought patterns, but nothing combats the loneliness and isolation this injury has caused like talking to someone else going through something similar. I can't recommend this enough.
- Sleep. This should be a given, but getting good sleep is a must. I feel terrible on days when I fail to sleep well.
Effective Accomodations
FL-41 glasses have been a lifesaver for me. It can be counterproductive to consistently wear sunglasses as it can further sensitize your cortex to light. These glasses block the most irritating and uncomfortable wavelengths of light without outright dimming the world around you, avoiding this dillema. I wear them indoors whenever it's extra bright, I need to use a screen, or I'm focusing on a visually intensive task. They're also helpful at night in dealing with the glare from streetlights and headlights.
Polarized sunglasses are another necessity for spending any time outdoors. I have an extremely difficult time in broad daylight without my sunglasses; I'm bombarded with visual stimuli and my brain struggles to focus on anything. This actually results in dizziness and physical sickness that can take hours to resolve. The same goes for bright supermarkets or big-box stores. The sunglasses aren't perfect but definitely make these activities a good bit more tolerable.
Dark mode / accessibility settings. This one should be obvious. While I try to avoid screens in general, when I do use them, I make sure to take advantage of visual accessibility options (such as blue-light-blocking night mode or similar color filters), dark mode on all apps, and maintain low brightness. Finding the right backlighting is also important. Using a screen in pitch black is uncomfortable due to the contrast.
Flicker-free lighting. It took a lot of trial and error to discover that I tend to feel the most uncomfortable under lighting that flickers or uses pulse-wave modulation to control brightness. I've replaced most of my home's lights with incandescent bulbs or flicker-free LEDs which have made evening lighting much more comfortable.
E-ink monitors. This is a relatively new (and expensive) technology, but I have portable and desktop e-ink monitors which are far less straining and fatiguing than back-lit monitors. I'm able to use these for an extended period of time without too much discomfort. I'm hopeful that these will allow me to return to my career if my symptoms don't worsen.
'Return to Baseline' Toolbox
During a normal day there's many times when my symptoms will flare and I'll feel overstimulated, uncomfortable and fatigued, despite all the above treatments and accomodations. For these times I have a small list of go-to remedies which help alleviate my symptoms and bring me back to a more comfortable baseline.
- Lemon-infused water is a simple drink which proves to be very soothing. This is great when paired with one of the below physical activities.
- Ibuprofen. Not wise to abuse this OTC pain medication due to its kidney-harming potential, but ibuprofen does an excellent job to numb my headaches and head pressure I get from too much visual or cognitive stimulation.
- Music. While it's hard to find comfort and pleasure in visual things, I'm luckily able to appreciate music just as much as I was before my injury. I've invested a great deal in high-quality speakers and have put together some well-curated playlists of my favorite artists and genres. Music is an amazing and effective distraction from the frustration and suffering I face.
- Mindful showers. This has become a go-to of mine: a nice shower in total darkness brings me as close as I can get to my previous clear-headed self.
- Short naps are helpful when fatigue is prominent and I need a 'hard reset.' Sleeping too long can make me feel worse, however, so I try to keep these around 30 to 45 minutes.
- Crying. Maybe this one is a little depressing, but hear me out. I hadn't cried for over a decade before my injury, but I've found that letting out my frustration and sadness this way is extremely cathartic and usually leaves me feeling better. I don't hesitate to let out my emotions anymore.
On another note, I've recently received notice that I've been admitted to Mayo Clinic through their general medicine pipeline. I'll be flying to Rochester, MN in mid-May and working with specialists to hopefully find a more specific cause and effective treatment for my symptoms. I'll be sure to document my experience on this blog.
To whoever is reading this - have a wonderful Easter holiday!
-A
Hello readers! To conclude the dramatic story of my disability's origin and development, alongside my experience and treatments, I figured I'd spend some time detailing where exactly I'm at now. I hope to detail what symptoms I'm facing today, what my limitations are, and what my day-to-day looks like. This should establish a concrete baseline I can compare against in future posts. Let's begin!
Symptoms
I had a running list of my symptoms when all this first started, but there's simply too many to count now. I've separated the most frustrating symptoms I'm dealing with now into four different categories: visual, cognitive, physical, and psychological.
Visual Symptoms
To start, I've listed all the symptoms I experience that are included under the 'visual snow syndrome' diagnosis. None of these are too distressing aside from the trailing.
Static. During the day, everything looks fuzzy. Certain lighting conditions make it less apparent. The static is much more intense in darker lighting and it can be hard to see very far in front of me.
In pitch black, pulsating bright blue static also appears. It forms 'clouds' that move across my visual field, emerging and disappearing.
The static is always very bad when I first wake up. Interestingly, I can see the 'refresh rate' of the static speed up as I'm waking up. Usually I feel pretty terrible until the static is moving quickly.
- Ghosting. Lights, screens, and bright objects typically have a translucent 'ghost' image just above the actual object. It can be distracting to read white text on a dark background as I essentially see the text doubled.
- Starbursts. Light sources, especially street lights and car headlights, have wide, spiky starbursts that are sometimes colorful. Apparently this is common in individuals with astigmatism, which I do not have.
- Halos. All light sources have a 'halo' of light around them.
- Flashes. I see white, black, blue, and sometimes red flashes in my central and peripheral vision.
- Positive afterimages. In moderately lit to dark environments, any light sources will leave positive afterimages in my visual field after looking away. These are replaced by negative afterimages after a few seconds.
- Negative afterimages. After seeing a light, even if just for a few seconds, a negative afterimage will be ingrained in my vision -- sometimes for several minutes. The same is true for seeing dark objects; if I look away, I'll see a light afterimage.
- Streaking. Bright lights tend to have linear 'streaks' that stretch vertically or horizontally across my visual field.
- Trailing. Anything in motion tends to have a 'motion blur' effect. This can be disorienting and frustraing as it makes it hard to make out fine details and focus on things that are moving.
There's other symptoms I face outside the typical visual snow syndrome realm that are just as distressing or worse. A lot of this has to do with the fact that my vision seems to be "intense." It's as if the signals coming from my visual cortex are amplified, overloading my frontal cortex and making it hard to process it all. Without any specialized glasses or sunglasses, trying to look around and primitively interact with the world is extremely difficult.
- Visual stress. This is also known as pattern glare. Patterns of alternating color, especially black and white, are difficult to look at, as if they're too 'bright'. This makes it hard for me to look at white screens with bold, black text, or even written text on white paper. In fact, text with intense contrast can sometimes appear distorted, with colored blobs covering each word.
- Heightened contrast. All colors seem way too vivid; reds are way too red, blues are way too blue. This would be a positive if it weren't for the fact that my brain is overwhelmed by it all. Grocery stores with ailes full of brightly colored objects are a nightmare.
- Dimmed vision. It seems like as a result of being overloaded, my brain attempts to compensate by 'dimming' everything I look at. By 'dim' I don't mean darker, it rather feels like I'm not able to take full advantage of the visual signal coming from my visual cortex, as if there's a throughput capacity. This is very noticeable after I'm in a visually stimulating environment.
- Visual lag. There is a noticeable delay in my visual processing that can range from a couple hundred milliseconds to whole second or longer. This is extremely disorienting and makes any form of head motion difficult.
- Flickering. When I'm tired or just waking up, my vision will typically flicker (like a strobe light) for several minutes. If I turn on the light in the middle of the night, the flickering can be nauseating. My peripheral vision also tends to flicker when I'm looking at a screen in a dark evironment.
- Distortions. This has improved to a certain degree, but my vision often processes things in a way that makes them appear fake. Peoples' faces often appear plastic or as if they were wax caricatures. I have to emphasize that this isn't a 'feeling' -- it is actually the way things and people physically look. This one is pretty damn scary.
- Light sensitivity. I'm certainly more sensitive to lights than I was before. I used to be an excellent night driver, but that seems unthinkable now with bright headlights, streetlights and stoplights. My 'light sensitivity' has a cognitive dimension to it as well, however. It seems that looking at lit objects (especially screens) scrambles my brain and makes it difficult to concentrate. This is my most disabling symptom.
- Tunnel vision. This isn't as if I'm looking through a funnel, but rather a loss in my 'functional' central vision. I can only focus on a small point in front of me, which makes reading, looking at someone, or even trying to take in a piece of artwork difficult.
Physical Symptoms
- Tinnitus. A high pitched ringing and hissing in both ears that's always present, but especially noticeable in quiet environments and when first waking up. It can sometimes flare in a single ear, especially when using screens or seeing bright lights.
- Nerve pain. Random, pulsating nerve pain in my extremities. This has luckily almost entirely ceased since beginning a low-dose prescription of Klonopin.
- Numbness and tingling. I'll often feel numb in my hands, feet and legs. This interestingly seems tied to how 'overstimulated' I feel.
- Facial pressure. I frequently feel strange, pressure-like sensations on my face, and sometimes in my mouth and jaw. This again seems tied to my level of visual stimulation.
- Headaches. I used to have frequent icepick headaches in my temples and other parts of my head, though these have mostly ceased with time. I still tend to have intense pressure headaches towards the end of the day if I overextend myself visually and/or cognitively.
- Head pressure. Another one of my most disabling symptoms. Cognitively or visually intensive stimulation will quickly create a feeling of discomfort and pressure in my head. This is another one of my most disabling symptoms as it prevents me from focusing for extended periods of time. The only way to avoid this is to take frequent breaks where I close my eyes in a quiet environment. If I try to push through the discomfort I'm left with a painful tension headache. Ibuprofen is the most effective OTC medication I've found to relieve my head pressure, and magnesium citrate can somewhat alleviate the intensity.
- Trouble focusing eyes. I have a very hard time keeping my eyes focused on something, especially when it's visually stimulating (like a window or a screen) or a noise is sounding simultaneously. My eyes will physically unfocus from what I'm looking at leaving everything looking blurry, and I have to consciously try and refocus my eyes. Another extremely frustrating symptom.
- Visual zone-out. This is a scary symptom that I haven't seen commonly discussed. When I'm not consciously trying to focus on something, me eyes will unfocus (as discussed above) and my vision will begin to degrade into a strange, high-contrast, low-definition rendering of my environment. The resulting image is scary and how I imagine the world would look on psychadelic drugs. Note that this isn't something I attempt to do, it seems to be the 'resting state' of my brain when I'm not putting effort into visually focusing on something.
Cognitive Symptoms
- Visual overstimulation. Reiterating the above, too much visual stimuli can somehow stall my cognitive processing. It's nearly impossible for me to concentrate on screens that aren't brightly lit, and even at minimum brightness I develop eye strain and tension headaches within minutes. In general, I find it very hard to concentrate on anything at all when I'm overloaded.
- Trouble reading. This is a serious, systemic issue that likely has both physical and psychological attributes. I find it very difficult to process and understand written text. I will write more about this in the future, but this is one of my most frustrating symptoms and prevents me from feeling like I can freely interact with the world. When reading small-text, single-font passages I don't have a lot of trouble, but I struggle to read billboards, article/email titles or advertisements and understand the meaning. I can easily read aloud the words, but somehow the context and meaning is lost. It's as though the semantic 'yes, I get this' feeling is missing, leaving me wondering if I have actually absorbed the words I am looking at. There are times I'll stare at a sentence or even a single word for an extended amount of time until I'm confident I've processed and understand it.
- Trouble listening. This seems related to reading and is likely more of a psychological issue than a cognitive issue. I often find it difficult to follow conversations or switch my focus when multiple people are talking. It feels like this is an automatic task that has become manual. I never used to 'think' about listening, but now I find it difficult to not do so. It seems like the harder I try to pay attention, the less I'm able to understand.
- Processing delay/dysfunction. It often takes me a few seconds to comprehend words or things I'm looking at. This is unpredictable which makes it all the more frustrating. There are times when I'll be looking at something and it's as if I'm totally blind, like my brain is totally ignoring the world around me.
- Cognitive fatigue. Doing any kind of cognitive task is difficult and can lead to head pressure rather quickly.
Psychological Symptoms
- Loss of meaning. It seems that a lot of everyday concepts have lost their mental 'meaning' in my brain. This symptom is related to my reading troubles in some ways. I believe this is a common dissociative symptom, but it is extremely frustrating. Sometimes I will stare at the current temperature, date, or time for dozens of seconds wondering why it's not 'clicking' in my head. It takes a while for me to build a reference point so I can comprehend what I'm looking at and move on.
- Sense of overwhelm. Pretty much everything feels overwhelming. Just existing can sometimes feel like it requires too much cognitive effort. This was interestingly an issue even before I became as sensitive to the environment as I am today, but there's a genuine reason now for me to feel this way, as most activities leave me feeling overstimulated and drained.
- Anhedonia. I have a hard time distinguishing any of my emotions as I'm in a constant state of discomfort. I really have three distinct emotions: less discomfort, which I equate to happiness, more discomfort, and sadness. I never was a crier, but I find myself crying a lot these days. I actually see crying as a blessing. It carries a real, raw emotion I can feel, and typically relieves some of my tension afterwards.
- Derealization. This seems to have a physical origin, but at times of high stimulation and stress, I begin to struggle to see the world as real and a subtle feeling of panic emerges. Sometimes this is triggered when I think about my current condition and how much I suffer on a day to day basis. I believe it serves as a defense mechanism from my readings but it is scary nonetheless.
- OCD. When my symptoms first began I became hyperfocused on everything that was changing. While I've come to accept my physical and visual symptoms at this point, I've developed a compulsion to always try and read text around me to 'check' if I understand it. Usually I don't, which perpetuates the habit. It's very frustrating, and has to do with my reading troubles.
- Anxiety. Sometimes my more frustrating symptoms (reading troubles, overstimulation, visual lag) can invoke an anxiety response. This was a big issue last fall when my symptoms were quickly becoming severe, but a mix of mindfulness and Klonopin have largely alleviated this issue.
- Depression. This is without a doubt the result of dealing with my symptoms for the past 11 months and watching my life and career implode in front of me. For what I've dealt with and lost, this is actually not as severe as it could be.
- Lighting sensitivity. Note the distinction between this and light sensitivity. I've noticed that certain lighting conditions, especially outdoors around dusk, bring out noticable negative cognitive and psychological reactions. I end up feeling depressed, fatigued, or disoriented. As such, I'm careful to avoid these conditions and stay in lighting that feels comfortable.
- Manual-ization of everything. As my condition has progressed, I've noticed that it feels like the way I interact with the world is more and more manual. I'm not sure what the cause for this is exactly, but I find myself aware of and controlling actions as granular as eye movements or head turning. This can be worse at some times than others, and when it is especally bad I have a hard time concentrating on anything at all.
Limitations
This is a hard section to write as there's nothing that I objectively can't do. Everything just now has a certain level of discomfort and difficulty that makes some tasks unfeasible. Those unfeasible tasks are listed below.
- Not use sunglasses outside. You'll never spot me without sunglasses when I'm outside, especially when it's sunny. I'm quickly overwhelmed by my visual field and it leaves me feeling dizzy, disoriented and sick. Sunglasses (category 3 or 4) make the outdoors tolerable.
- Not use specialized glasses inside. Even normal indoor lighting is too much for me to handle. Without my specialized glasses or FL-41 tints I'm too disoriented and dizzy to navigate my home.
- Watch TV. The light, flickering and motion of TV shows and movies make them intolerable for my current condition. I'm quickly overwhelmed and struggle to follow the plot and keep up with dialogues due to the visuals.
- Play video games. This used to be a big hobby of mine, but playing any kind of game on a screen will quickly lead to debilitating head pressure and tension.
- Go to shows/concerts/clubs. The lights and sound make these activities completely impossible at the moment.
- Alcohol. This leaves me with terrible brain fog and head pressure, even after just a single drink. Far from the heavyweight I used to be in college. I don't drink at all anymore.
This doesn't paint the full picture of my disability. Just going out to eat at a restaurant is a very difficult task for me at the moment. The lights and sound leave me in a constant state of discomfort and I have a lot of difficulty reading menus. I try my best to fight through as restaurant hunting used to be one of my favorite activities, but it's often simply not worth it. Shopping is extremely uncomfortable and I avoid it as much as I can. Socializing is essential to remain connected to society but it's hard to do so in a comfortable way.
A Day in the Life
Waking up is by far the hardest part of my day. My symptoms are at their very worst when I'm first opening my eyes, and I have to deal with a solid 15 minutes of flickering, static, tinnitus and head pressure before my brain is 'warmed up.' A morning shower usually helps kick-start this process.
I take my morning medication and supplements and make myself a glass of lemon water and often add some magnesium citrate powder. I receive a print copy of my favorite newspaper and try my best to read it after grabbing a coffee at my neighborhood coffee shop. Reading is difficult, and I keep a pen or highlighter handy to 'consciously' read and ensure I'm internalizing the articles I pick. On good days I like to go for long walks or runs around the city, always with my best sunglasses.
I'll write a future post on my current treatments and accomodations, but I've purchased a portable and desktop e-ink monitor which make computer work more tolerable for extended periods of time. When I need a break I typically go on a quick walk, rinse off in a hot shower, or take a few minutes to relax with my eyes closed.
I try my best to keep up with my friends. I call my out-of-state friends as much as I can and get together with my in-person friends with dinners or get togethers at relaxed restaurants or lounge bars near my condo. Lighting is always a concern and I bring along my specialized glasses to prevent too much discomfort.
I see my functional neurologist three days a week for TMS, neurofeedback, vestibular therapy and cognitive exercises. I try to get massages every other week to relieve tension and relax. I often have phone calls with my long term disability insurance provider and my workplace discussing my return to work plans and potential accomodations.
Ultimately I stay as busy as I can, socializing, going to my appointments, reading the news, or working on small home improvement projects to stay productive. Whether or not I've had a long day, I'm always exhausted come evening and typically am in bed by 10. I religiously take melatonin and usually am out within a few minutes of my head hitting the pillow. Since this all started, I've been having extremely realistic dreams that almost seem more real than real life. This makes sleeping fun in the moment, but I'm always left depressed in the morning. In my dreams I'm my past self -- my real self -- living the life I used to live. When I wake up, I'm really just re-entering the nightmare that is currently my real life.
It's crazy to think about, but a year ago I wasn't facing a single one of these symptoms. I had no idea what a neuro-optometrist was, nor did I own a single supplement bottle. I had never given a second thought to my vision or cognitive ability. It's baffling, frustrating, and surreal how quickly and severely my condition has deteriorated. My only option is to take this one day at a time. I'll do so as long as I can.
-A
Hi everyone. Wherever you are I hope you're starting to see some remnants of spring weather. It's damn cold here, but I'm looking forward to enjoying being outside again. With category 3 polarized sunglasses of course.
For this post, we're going to rewind back to my initial symptom onset -- May 14th, in case your memory is worse than mine -- and take a more personal, introspective look into my illness. While the physical symptoms and resulting limitations were certainly frustrating, disheartening and scary, I have also faced a great deal of psychological turmoil that has arguably been harder to bear. This will likely be a more dramatic and intense post than my previous few. Consider yourself warned!
Initial Onset
My intense episode of panic I experienced on May 14th was by far the most psychologically distressing event of my life. I went into detail on this in an earlier post, but the feelings of doom, despair, terror and pain were beyond what I can convey in words. Having nothing to attribute it to but my own head made it magnitudes harder for me to process.
It genuinely felt like I underwent a complete cognitive shift; like my brain suddenly no longer worked the way it had my entire life. This is extraordinarily hard to explain, but it's almost as if overnight the entire way I interacted with and perceived the world had been fundamentally altered. Nothing felt natural anymore. I consistently felt 'uncomfortable' no matter what I did. I couldn't seem to relax or feel at peace the way I did before; I couldn't reach my baseline sense of consciousness that I used to fall back on. Instead, it was like there was something in my head that was making me feel constantly tense and distressed. It didn't feel like a part of me -- it felt like my mind had somehow been compromised. When I'd frame it this way I'd feel a great deal of distress.
I hoped that what I was experiencing was some kind of 'head cold' that was making me feel different than normal, and figured the best recourse would be to ignore the strange, uncomfortable feelings. When off work I attempted to live life the way I always did. I quickly found that watching TV and using a computer were uncomfortable and unsustainable hobbies. I did find some solace in working out. However, I noticed that everything I did was beginning to feel manual, almost artificial rather than natural. I wasn't really doing anything because I wanted to, but because it was what I had always done. I kind of fell into an autopilot that felt driven by my past life's momentum.
As the symptoms progressed and I saw no signs of improvements, I began to worry a greater deal. The light sensitivity progressed, I began seeing static and floaters and light flashes, and I had a harder and harder time concentrating while at work. I dealt with debilitating headaches each day when I returned home. I remember researching my symptoms and learning about 'visual snow syndrome' and other strange diseases. There's no way that could happen to me, right? This is the stuff you read about in the news and feel bad for the victims. You never really imagine it happening to yourself. I had hope that things would get better with time, but I had feelings deep down that it wouldn't be so easy.
The World Becomes Scary
Objectively, my visual processing had been compromised. Nothing looked 'normal' anymore. Everthing was too bright, zoomed in but out of focus at the same time, slightly blurry but in a way I can't really explain. The literal act of looking at things became manual. I was no longer able to 'take everything in' the way I always had; I could only focus on a narrow focal dot in front of me. People's faces looked strange and unnatural. I knew it wasn't normal and it was something wrong with the way I was perceving things, but nonetheless it was distressing.
After a few weeks of my symptoms only getting worse, I was also beginning to feel the residual psychological effects. The constant tension in my head and inability to relax was canceling out all my other emotions I was used to. I stopped experiencing the normal feelings of happiness, sadness, and anger, but it went beyond that. I never felt relaxed when waking up or sleepy when it got late. I didn't feel calm and content lying on the couch after a long day. I was constantly wired and nothing I did seemed to shake it. It was extremely scary to notice these familiar feelings subside over time. It was almost like I was losing myself and my connection to the world.
Within a couple months, it had become hard for me to actually make sense of what 'normal' was. My constant discomfort hadn't diminished and had only become worse. My cognitive deficiencies were evident every day; it had become hard to focus on conversations with friends and read things as simple as restaurant menus. I began avoiding any forms of unfamiliar, challenging cognitive tasks. If I tried to power through anything remotely difficult, the head pressure and tension would become unbearable. At work, I stuck to what I was good at an what I was familiar with. At this point I truly was 'riding my momentum' I had built before becoming sick.
A significant change I noticed in myself was my stress tolerance. I've always taken pride in my patience and resilience in times of distress. However, any minor issue or inconvenience had suddenly become too much to handle. This entrenched itself in the way I viewed the world, almost overnight. Everything felt overwhelming. Things I used to find enjoyable now invoked anxiety-like responses, even when merely considering them. I'd find myself naturally wanting to do something fun, as mundane as a dinner with friends, but the concerning thought of the bright lights and loud noises would overpower my original desire.
I didn't want to admit to myself that there was something wrong. The goal was to cope, box up the feelings, and continue with life as normal. I didn't want anything to change; I wanted to be the person I had always been. I forced myself to go out with friends and spend time with family. With computers being uncomfortable, I tried to stay true to my interests and career by reading my computer science textbooks. Nothing felt right though. Everything was forced. I couldn't truly focus and enter the state of concious attention and 'flow' I had taken for granted my whole life.
I finally broke in mid-July during a trip to Seattle with my girlfriend. I imagined my symptoms as being the result of work-related stress, and time away from it all in one of my favorite places would be the perfect cure. I found that to not be the case, but moreso, having the time to truly come to terms with my physical and mental state was extremely frightening. I cried for the first time in over a decade, sitting in a cabin in the woods. I was scared. I didn't know what was happening. I wanted it to stop.
Losing Myself
Throughout my life I developed a strong, robust identity based on my interests, skills and passions. In the span of a few months, nearly everything I took for granted and assumed as my identity had seemingly been stolen from me. As depressing and miserable as that sounds, it ultimately was a truth I was learning to face. My condition made it impossible for me to enjoy spending time on the computer, making my career immensely difficult and any kind of video games, videos or personal projects too uncomfortable to enjoy. The TV was too bright and I had become too sensitive to the motion to watch shows and movies with my friends. Reading printed text was still possible but getting more difficult every day.
Aside from my physical limitations, I found myself unable to think as quickly as I used to and my problem solving skills hindered. All the while, I had absolutely no idea what was happening to me. Scans were coming back clear. Did I have some kind of terrible, uncurable disease? I didn't have any answers. How does one deal with a complete loss of identity without a clear cause? I'm not sure there's a straightforward answer.
Debilitating Anxiety
As my symptoms continued to progress I also began attempting to fix my heightened TSH levels through a course of levothyroxine. This did not improve any of my symptoms, and within three weeks I was facing the most intense, indescribably terrible anxiety I had ever felt (aside from my initial panic). This wasn't a physical form of anxiety, but something purely psychological that made me feel as if the world was closing in on me. Imagine watching the world end around you, all the people you hold dear and things you cherish destroyed, and facing your demise head-on. This is the best way I can describe how I felt during my worst. I recall lying in bed staring at the ceiling, virtually paralyzed with fear. The strangest thing was that I wasn't scared of anything per-se. Obviously, I could have been scared about my worsening symptoms and questionable future. But in this case the anxiety seemed foreign, like it was caused by something I couldn't control.
I ended up going to urgent care, and without going into too much detail explaining my feelings to the nurse and essentially begging for relief. While the nurse practitioner explained they weren't able to prescribe any heavy-duty anxiety medications, she had a personal experience with my thyroid medication that gave her similar symptoms; in fact, she shared that she had been suicidal until she discontinued the drug. As soon as the appointment was over I called my endocrinologist and asked if it would be possible for me to quit that day. She agreed, I did, and within a day the 'doom anxiety' I was experiencing had completely diminished.
Acceptance
I finally broke down and accepted how severe my state had become after I went on short-term disability leave. I was having a conversation with my girlfriend and out of nowhere I completely broke down in loud, ugly sobs for nearly an hour. I was so scared. I still didn't know what was wrong with me. Everything I had built for myself... so many years of work and effort... but more than that, my emotions and identity had been stolen. I didn't like who I had become. I just wanted to be myself again.
It was this point when I realized I needed to truly come to terms with my 'new' self. Trying to pretend like I was the man I had been until May 14th was futile, and was breaking me. I had to learn to accept myself with my disabilities and find ways to cope. This would prove to be immensely difficult, but it started with this realization.
Over the next several months I spent on leave, I found ways to stay busy. Yoga, meditation, talking with friends, audiobooks, anything to feel somewhat normal. I purchased specially tinted lenses to make uncomfortable lighting slightly more tolerable. I learned my limits and how to tell when I was becoming overstimulated and needed a break. It took effort, but I managed to develop a schedule that grounded me and made me feel like my life wasn't over. I learned to find pride in how long I was able to fight my condition, and see every day I carried on as a small victory. This change in mindset was immensely powerful and made the world seem slightly less scary.
This was a very high level overview of some of the emotional hurdles I've faced. There's much here to dissect and I intend to in the future. Unfortunately, I can't say I'm now in a great place and have learned to mentally conquer my illness. However, I'm on a journey to do exactly that. My goal is to be comfortable with where I am, who I am, and who I might be if I don't get better.
-A
Greetings, fellow readers. I've been looking forward to making this post for quite some time now -- we're going to pick back up from when I went on disability and review the treatments I have tried since, catching up to where I am today. I'll document how my symptoms have changed as well; again, I'll save the psychological side of my journey for future posts. Let's get started!
I officially began my short-term disability leave in early November 2021. Suddenly having so much time on my hands and so few distractions was both a blessing and a curse; I finally had time to dive in and start pursuing treatments, but I was also now focused on my symptoms 24/7 and realized just how bad things had gotten.
Finding My Team
A week or so into my leave, I managed to be seen by one of the few well-rated neuro-ophthalmologists in my city. He listened to my case carefully and referred me to a local retinal specialist to rule out any physical issues with my eyes. After the testing came back clear, I returned to his office to receive an 'official' diagnosis of visual snow syndrome, and he suggested I seek out neuro optometry for a post-concussion-aligned visual therapy regimen.
Following my doctor's orders, I found one of the few neuro-optometrists who specialized in vision therapy for 'visual snow'-like cases. This unfortunately involved weekly travel to Plano, TX for in-person evaluations and therapies.
Honing in on my case's similarities to traumatic brain injuries, I found a promising local institution specilizing in rehabilitation from 'post-trauma vision syndrome', a common set of symptoms experienced by individual suffering TBIs. After a lengthy evaluation and diligent note-taking as I told my story, the team at this institution prescribed me a pair of glasses with lenses customized based on my peripheral vision's dysfunctions issues with visual overstimulation.
New Symptoms
At this point I was by far at my worst symptom-wise. The 'visual snow'-related symptoms, i.e. static, afterimages, halos, were not a big concern. Rather, my vision had become so blurry and distorted that I had a hard time seeing just a few feet in front of me. I felt dizzy and disoriented 24/7 and felt this constant feeling of head pressure and lightheadedness. I was wearing sunglasses all the time; trying to navigate outdoors (or even indoors) without them would me feeling overwhelmed and sick for hours. My brain had lost the ability to comprehend things I was looking at; everything looked 'off', and people's faces looked morphed and blurred.
Aside from the visual issues, I had developed strange shooting nerve pains in my hands, feet and arms, which would randomly begin pulsing without any obvious trigger. The left side of my body would randomly go partially numb and I'd feel pins and needles in my extremities. Several times the numbness spread to my tongue. I began feeling strange pressure-like sensations on my face, specifically on my cheeks, forehead, and even inside my mouth. It seemed like these symptoms would flare up after being stimulated past my brain's threshold, especially after attempting a walk without sunglasses or trying to use a screen.
The best way I could describe my situation was surrealistically terrible.
DIY Therapies
While visiting these specialists, I was also hard at work finding medications, supplements and activities I could do at home to aid in my recovery. It was pretty clear that I was stuck in a hyper-stimulated state; aside from my visual snow and tinnitus, essentially any combination of motion, light and sound would make me feel panicky.
My first voyage into the world of medicinal treatment involved meeting with a psychiatrist and discussing anxiety-reducing drugs, hoping they would help with my symptoms and general stimulatory overwhelm. After trying Zoloft, Lexapro and Remeron with severe side effects, I found I was a very poor responder to potent pharmological psychiatric medications. I decided to tackle this side on my own.
I became something of an armchair neuroscientist and learned about the complex neurobiological underpinnings of stress and anxiety, and what kinds of supplements could help calm down my brain. My research brought me to a collection of supplements and medications which had been shown to be effective anxiolytics without documented severe negative side effects. Below are a few I began taking:
- Bacopa Monnieri: an herb which helps upregulate neural GABA(A) receptor density, allowing the primary inhibitory neurotransmitter GABA to have a larger effect..
- Emoxypine: a chemical derivative of vitamin B6 which increases the binding affinity of GABA at receptor sites.
- Etifoxine: a prominent European anxiolytic which serves as a positive allosteric modulator of GABA(A) receptors, similar to benzodiazepines, but without a quick development of tolerance and withdrawal effects after cessation.
- Kava Kava: a popular herb with GABA(A) potentiating effects.
I began attempting to revamp my lifestyle to live as stress-free and relaxed as possible. Getting massages, taking baths, practicing yoga at a local studio, and getting into meditation. I took meditation to the next level in fact, purchasing a FocusCalm portable EEG to monitor my practice. I combined all this with some light exercise and lots of time outdoors.
By the end of November, I was beginning to see very slight signs of improvement. I could function indoors without the use of sunglasses, a lot of the physical symptoms had mostly subsided, and on one remarkable evening my vision shifted from horrific distorted bluriness to something much more tolerable, although almost more intense and high-definition than normal. I have no idea if it was the medication or lifestyle changes, but the improvements were noticeable.
Therapies Intensify
In early December I had my initial consults with the neuro-optometrists who would begin leading my visual therapy and lens-based rehabilitation. I began flying weekly to Texas for vision therapy, flying back to my hometown to be with my family during weekdays, and returning home on weekends. I was flying more than my friends working in forward-deployed consulting roles, which is saying something. Despite typically loving travel, it was completely overwhelming.
In early January I managed to get admitted by the TBI rehab center called CognitiveFX based out of Provo, UT. I stayed for a week and a half and underwent extensive vision, vestibular, cognitive and psychological therapies. CognitiveFX is known to be the penultimate 'concussion bootcamp' program, and I did have a great experience with all the therapists I worked with. The program uses an fMRI to evaluate pre-therapy and post-therapy brain activity, advertising a high proportion of patients seeing better test results on the second scan. My first fMRI showed slowed 'processing speed' and 'distraction suppression', which supposedly is common in post-concussive patients. After my grueling week of therapy, I was bewildered to see my second scan show severely worse results. One of the chief neuroscientists explained that it could be attributed to fatigue as I had just done some cardio prior to the scan. Nonetheless it was a disappointing close to the week, and I can't say I saw any remarkable improvements from the program.
Later in January I began seeing a functional neurologist just a mile from my condo who had experience treating concussions. I began seeing him three times a week, undergoing visual therapy, vestibular therapy, and some more innovative treatments including TMS and neurofeedback. This ended up being a huge blessing; the neurologist was able to take over managing my vision therapy, and I no longer needed to travel to Texas every week. By early February I was established in a new routine, wearing my specialized lenses and seeking treatment at my functional neurologist's practice while attempting to figure how to navigate my strange new world.
I also began the transition to long-term disability in mid-January. This proved to be a much bigger headache than short-term disability, which was handled purely by my employer; I had to work with an insurance firm which required a great deal of correspondence and paperwork. Luckily, however, once completed, this would eliminate the stress of having a forced return-to-work timeline, letting me focus on healing without worrying about paying the bills.
Aside from a few small details, this brings us to where I am today. I'll make a post soon documenting the symptoms I'm currently facing in as much detail as I can, as well as the additional treatments I have on the horizon. Next, however, I'm planning on doing a deep-dive into the psychological side of my illness and how I've been able to cope.
-A
Hi all, happy April Fools! Feeling like absolute shit today, but I'm trying to be a little more consistent in my posting. There's so much I want to write about, but I think it's important to fully document my story first. This post will serve to fill in the details of my medical background and potential causes of my illness. I should note that while in the beginning I was (rather obsessively) trying to identify this cause, I'm now more focused on symptoms-driven treatment.
To start, a little about me. I'm in my early/mid 20's, male, and generally in good health. I'm in good shape and worked out regularly leading up to my symptom onset. I have no history of mental health conditions and can say the same about both sides of my family. In fact, I previously would have said that my mental health and emotional stability were some of my defining strongsuits.
The only relatively serious medical issue I've faced is hypothyroidism, which presented when I was a child. I was treated with armor thyroid for a couple years and weaned off the medication once my levels stabilized. My thyroid luckily remained in check for years afterwards.
Thyroid Issues
Although I wouldn't consider myself a hypochondriac, I've always been diligent and proactive with my health. Upon graduating from college and moving for my career, I felt like I had slightly less energy than usual. This could have easily just been a symptom of burnout, but I had my thyroid levels checked by my childhood physician (who treated my prior condition) and discovered my TSH was slightly elevated at 4.8. Those familiar with this ailment will note that such a TSH reading is barely recognized as abnormal; many scales identify a 'normal' reading to be below 5. My physician considered my results to indicate a mild case of subclinical hypothyroidism (high TSH with normal T3 and T4 readings), and after discussing treatment, prescribed me 120 mcg of NP Thyroid, a form of naturally dessicated thyroid medication containing both T4 and T3 (the active hormone).
This proved to be a mistake. I began my new medication regimen on April 18th, and a week and a half in I became more anxious than usual, developed a tremor in my hands and felt uncomfortably wired. After doing some online research I discovered that my prescribed dose was much higher than the norm for a case as mild as mine. Two and a half weeks into my treatment I returned home for mother's day and felt severe chest pain, which lingered for the next few days. This was the final straw; I booked an appointment with a well-rated physicial in my new city for the following Monday and explained my situation. He was astonished at the dosage of my medication -- noting that he would have had me on 1/8 my prescribed amount based on my labs. He recommended ceasing use of the medication cold-turkey immediately. I should emphasize the timeline here; I quit the medication on Sunday, May 9th, just 5 days before my symptoms began.
COVID-19 Vaccine
I received my first vaccine dose on April 10th and my second on May 10th, both Moderna. I didn't experience any side effects from either shot aside from a sore arm. Looking back, the chest pain I experienced in late April/early May could have been a mild case of myocarditis from the first shot. However, chest pain is a known symptom of hyperthyroid activity. Regardless, the timing of the second shot is suspect, being just four days before symptom onset.
Topical Prescription
Around this time I began using a topical formulation of minoxidil, dutasteride and tretinoin I purchased from a compounding pharmacy online to prevent hair loss. I applied the first dose around a week and a half before my symptoms began, and my second dose the night before. I didn't experience any side effects I attributed to the medication during my first dose or immediately after my second, aside from a tingly scalp.
Head Trauma
There are two specific incidents involving head trauma which occurred in the months leading up to my symptoms.
In mid/late March I was involved in a car wreck which involved a rapid deceleration (45 to 0). While I didn't have any direct head trauma, there was a good deal of whiplash, and my head hit the airbag hard before slamming back on the car seat's pillow. I was luckily able to walk away from this accident injury free and was not diagnosed with a concussion; I don't recall having any concussion-like symptoms either.
In late April, roughly two weeks before my symptoms began, I was punched in the head by a homeless man while walking with some friends at night. I had a few drinks that night and the details are hazy, but I recall being hit on the left side of my head near my ear. I don't have any memory of the rest of the night (though this could also be attributed to alcohol). The next morning I woke up with a pretty severe headache which I attributed to a hangover. I recall having some trouble hearing out of my left ear, but I figured any issues would clear up with time. Absurdity of the situation aside, I really should have sought out medical attention at this time and it's likely I did sustain a concussion. The headaches did end up mostly dissipating over the next week however.
Approximate Timeline of Events
- 03/17/21: Car accident
- 04/10/21: First COVID-19 vaccine dose
- 04/18/21: Begin thyroid medication
- 04/27/21: Punched in head
- 05/07/21: First topical prescription use
- 05/09/21: Discontinue thyroid medication
- 05/10/21: Second vaccine dose
- 05/13/21: Second topical prescription use
- 05/14/21: Hell begins.
What was the trigger?
At this point, nearly 11 months into this nightmare, I still am not certain what caused my illness. I would venture to guess it's likely a mix of the above circumstances. There is a good chance I will never know what exactly the cause was. I did spend a great deal of time speculating, however, and came up with a few hypotheses which I think have some value.
Severe thyroid dysfunction. While at this point I'm not convinced this entirely explains my symptoms, there is no doubt that my thyroid hormones were whipped around to a great degree when starting my intense regimen of NP Thyroid and then suddenly halting. Just a few weeks after quitting, my TSH read 6.3 which was the highest it had been since I was a child. A few months later it had risen to above 11. It seems my pituitary is working hard to stimulate my thyroid gland's hormone production, which suggests some form of dysfunction, perhaps just fatigue. There are many cases of thyroid issues causing cognitive issues as well as initiating symptoms under the 'visual snow syndrome' umbrella. However, my case is severe, and none of the endocrinologists I have met with believe my medication could have triggered all of my symptoms.
Vaccine-related inflammation. I'm personally doubtful that the vaccine alone could be responsible for my symptoms. While I've read some cases of people sustaining 'COVID-19 long haul'-type responses to the vaccine, I haven't seen a case as specific and severe as mine. My symptoms are almost entirely neurological, while most vaccine-related issues seem to involve fatigue and vascular inflammation which I do not have. The vaccine does invoke an immune response though, which can induce temporary inflammation and potentially re-ignite past infections. This was partially why I went down the Lyme rabbithole, as I was curious if the vaccine had potentially flared some kind of dormant infection.
Androgenic disregulation from topical prescription. This is an interesting and also rather scary hypothesis. There's a large community of individuals who have suffered long-term issues after use of popular hair loss medications, specifically finasteride and dutasteride. These medications are known as '5-alpha reductase inhibitors', which at a high level inhibit the enzymes capable of converting testosterone into DHT. While most of the issues these drugs cause are related to sexual dysfunction (which I luckily am not suffering from), I have seen a few cases of individuals developing similar neurological symptoms after quitting these medications. The timeline is also extremely suspect, as I applied my second dose the night before my symptoms began. However, I have yet to find anyone to suffer any form of negative side effects from a topical dutasteride formulation, and in my case I wasn't ceasing the medication but actually reapplying. Undeniably, however, the medication does affect the male hormonal profile, and can disrupt several other important pathways involved in neurosteroid synthesis and maintenence. I might go into depth on this in a later post.
Concussion / TBI. This is a straightforward, logical and compelling hypothesis, especially at first glance. It is possible I suffered a mild concussion after my car accident, and extremely likely I suffered a mild to moderate concussion after being physically assaulted. My biggest difficulties -- light sensitivity, overstimulation, trouble reading -- are extremely common after head injury. After telling my story to countless specialists in various disciplines, virtually all have agreed that this is the most likely explanation for my struggles. I didn't realize this at the time, but concussion symptoms can be delayed, and can get worse over time if one doesn't take a break from straining activities or seek rehabilitation as your brain will begin to compensate by improperly adapting. The full spectrum of my symptoms, however, is not easily explained by a simple physical head injury. This leads to believe there is likely more at play.
At this point it should be pretty clear that I'm unconvinced a single one of the above factors fully explains my case. It's possible and perhaps even likely that all of the factors combined to create a 'perfect storm' of physiological disturances which cascaded into my severe symptom profile. I'm personally leaning towards a case of post-concussive syndrome doubled with an acquired sensory processing disorder which was likely caused by rapid hormonal shifts and subsequent disregulation of essential neuroendocrinological pathways. This could have caused lingering neuroinflammatory responses which were kicked off by my vaccination and perhaps reignition of past infections.
What does this all mean for me? Honestly... not much. I realize now that trying to pinpoint the precise cause is likely futile and also not necessarily the solution to all my problems. I have a specific set of symptoms which are most distressing to me at the moment and I'm attempting to remedy them through various therapies. Perhaps one day in the future I'll have a better picture of what exactly went wrong. In the meantime, however, I honestly have no other choice than to accept my current situation and attempt to reach a point of comfort and stability.
In my next post I will fill in the rest of my timeline up to today, summarizing the treamtents I have sought and received.
Cheers,
-A