self.watch

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

---