Sierra Domb Q&A – Part 5 – My Visual Snow Syndrome: Then and Now

Sierra Domb QA P5

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Sierra Domb Q&A: Part 5

My Visual Snow Syndrome:
The and Now

by Sierra Domb, Founder & CEO, Visual Snow Initiative

Introduction

Hello, and thank you so much to everyone who participated in my Q&A! I really appreciate you sharing your thoughtful inquiries and personal stories with me. The Visual Snow Initiative (VSI) team and I are grateful for your continued support for our cause, kind words, and Visual Snow Syndrome (VSS) activism.

Due to the high volume of questions submitted, I combined some that were similar so more people can have their questions answered. I wanted to try my best to help as many people with their inquiries as possible. 

Additionally, my Q&A will be divided into several articles, with relevant questions grouped together for clarity. 

If your question is not directly answered in my Q&A articles, I kindly encourage you to check out the following links, as these pages already likely answer your question and may be helpful. 

Thank you in advance for understanding!

Helpful Resources for Inquiries Regarding VSS, VSI, and More:

FAQ page

Some of the answers to questions that were submitted can be found on our FAQ page, which provides answers to some of the most common questions regarding VSS and VSI, as well as helpful resources and links with further information. 

VSS Misconceptions page

On our VSS Misconceptions page, we also provide additional education and dispel some of the most common misconceptions regarding the condition. 

Treatment Options & Tips to Manage VSS

For questions inquiring if there are any treatments currently available or tips to help manage VSS, please feel free to visit the Managing VSS page on the VSI website. 

VSS/VSI Research pages:

News & Research/Latest Updates

List of Current Research Being Funded

Details of Currently-Funded VSI Studies

VSI has funded several research studies, some of which are upcoming and others that are currently active, exploring biomarkers, the pathophysiology, and potential treatment options (both noninvasive and pharmacological). Further information about VSS will be revealed, giving way to increased knowledge and more potential treatment options for the condition. For study details, the latest updates, and a list of the current types of research we are funding, please access the links above.

Finding a Doctor

For those struggling to find a physician with knowledge of VSS in their area, please access our Physicians Directory where you can search for a doctor or specialist by location.

Neuro-Optometric Rehabilitation Therapy (NORT) Practitioners

For those looking for a list of providers with expertise in NORT, this information is available on our Managing VSS > NORT page.

Q&A

Q 1: What is your VSS like today?

Q 2: Has anything helped you?

Q 3: Have you tried NORT and/or MBCT?

Since experiencing the onset of Visual Snow Syndrome (VSS) in 2015, my condition has changed dramatically. I quite literally experienced every visual and non-visual symptom associated with VSS. (For a full list of symptoms, please see our Diagnostic Criteria page.) The visual symptoms I experienced after onset were visual snow, palinopsia, enhanced entoptic phenomena, photophobia, nyctalopia, excessive floaters, diplopia, halos around objects, starbursts, and migraine aura. My post VSS-onset non-visual symptoms included tinnitus, depersonalization, anxiety, nausea, dizziness, depression, migraines, brain fog, paresthesia, sensory disturbances (such as “brain zaps” and other electric shock sensations), sensory hypersensitivity/hyperesthesia, and frequent fight-of-flight episodes induced by “sensory overload”. The most debilitating symptoms for me personally, which were frustrating and significantly reduced my quality of life, were (visual symptoms) visual snow, photophobia, palinopsia, and (non-visual symptoms) anxiety, depression, brain fog, migraines, depersonalization, paresthesia, tinnitus, sensory disturbances, and sensory hypersensitivity/fight-or-flight induced by episodes of “sensory overload”. Note: I always struggled with insomnia due to my preexisting other medical conditions, such as Erythromelalgia, which can flare-up during bedtime. However, after the onset of VSS, the insomnia became worse due to the constant strong visual disturbances and tinnitus.

My visual snow, palinopsia, tinnitus, paresthesia, and sensory disturbances, were constant. I experienced daily migraines, both with and without aura. They would sometimes last for days in a row (my longest migraine episode without any break lasted 12 days). The ringing in my ears felt intrusive, and distracting; the pitch would alter randomly sometimes but was typically sharp and high-pitched. I regularly felt pins-and-needles sensations and electrical shock sensations in my hands, feet, face, and the top of my head. My cognitive function noticeably reduced; I felt as though I could not think clearly, struggling to connect one thought to another and trying to piece together memories. Activities I used to enjoy with ease, such as watching television, films, and videos, playing video games, listening to music, going to the supermarket, and attending concerts/shows, all became challenging. My brain could no longer handle the visual and auditory sensory input without triggering a fight-or-flight response every time, forcing me to exit those situations. I felt as though there was something separating me from the world; the depersonalization was brutal. I had never experienced this before the onset of VSS. It was agonizing.

Additionally, my visual snow would fluctuate between moderate static to dense, intense static. My visual snow appeared in the form of thousands of pixelated strobing dots, ranging in color from black, white, gray, to pale gold, bright red, and bright blue. Its viscosity was normally fast, but it would sometimes speed up further or even slow down when I was changing positions. Abrupt movements always made the static more intense. I struggled to sleep each day as the visual snow was intrusively present 24/7 (even when I closed my eyes). Once I stabilized, so would the static back to its original state. On a numerical scale, with 10 being the most severe and 1 being feeling fine, my case of VSS would emphatically be classified as a clear 10 out of 10.

To help me with some of these symptoms, doctors prescribed me a conglomerate of neurological medications, which made my symptoms significantly worse. The side effects of these medications, common in many brain and migraine-related medications, cause me to experience new symptoms on top of what I was already going through. Some of these included syncope, narcolepsy, blurred vision, slurred speech difficulty/verbalize, worse migraines, and tachycardia. Thinking they were “safer” or “less invasive”, which they are in fact not, I tried a variety of supplements, none of which helped and instead, induced side effects as well. My desperation to resolve my VSS led me to try virtually everything in both traditional medicine and alternative medicine; nothing I tried helped.

Speaking with VSS researchers during the beginning days of the Visual Snow Initiative, including those who authored studies exploring available medications and VSS, they advised me against trying any more medications or supplements until we learned more about the condition. As mentioned in the previous question/answer, Are there any medications/pharmacological treatments for Visual Snow Syndrome?, the pharmacological interventions explored were relatively ineffective (meaning they either did not work for everyone with VSS or they did not work at all) and caused harmful side effects. They posed a great risk to overall health, often worsening the VSS symptoms. For the small group of patients who have reported slight improvements using medications, these same medications have also been linked to initiating the onset of VSS for others who have reported it “caused” their VSS. This is one of the reasons why we have funded research into treatment options (both pharmacological and noninvasive) that are safe and effective. I developed Post Traumatic Stress Disorder (PTSD) after my harrowing experience with VSS.

All the treatment options and tips we share on our website are methods that have worked for me and many others with VSS. For a full list, please access our Managing VSS page. Of course, I recognize that they may not work for everyone, as cases of VSS can vary depending on the person for a variety of reasons outlined here: Understanding VSS. However, if something has helped me, someone who experienced a debilitating form of VSS, then I want to share it with others, on the chance that it may help them too. I cannot stand by and watch people suffer when I have knowledge of something that can potentially improve their situation. Nonetheless, the Visual Snow Initiative is a science-based nonprofit organization, so we only share treatment and management options for VSS that are supported by scientific evidence or clinical research and are not sponsored. (If there is a published scientific study regarding VSS with helpful methods that you would like us to share, you can send it to our team at [email protected].) For example, medications made my VSS significantly worse. However, if there was substantial scientific evidence showing that medications were safe and effective for the large majority of VSS patients, we would still share this information, because it may be beneficial to some (even if it was not for me).

We recognize that what works for some may not work for everyone. Our goal is to share helpful information and offer education to people affected by VSS about what options are currently available that may benefit them (with scientific evidence). This allows them to learn about the latest body of research and resources, so they make informed decisions about their health and do what is best for them. 

The agonizing ordeal I described above represents the beginning of my personal journey. I am happy to say that today, the situation is much different. If I had to rate my VSS now, on average, it would be a 3/10. It can sometimes be a 4/10 (on the worst days, which are correlated with stress, hormonal changes, and viral illness) or a 2 (on days which my symptoms are so negligible, I truly do not notice my VSS at all). While they have also helped many others, I want to share the methods that have worked for me personally. They have helped improve my personal case of VSS, which was once a 10/10, and the symptoms I experienced have either reduced or resolved. Many of these are already outlined on our Managing VSS page, but I will go into further details about what worked for me. 

Before, however, I would like to note that although my case of VSS has significantly improved and my quality of life is nearly restored, I am still unequivocally dedicated to and passionate about finding a cure for VSS. My work continues as we strive for a cure and continue to improve VSS globally. Even though my situation is better now, I can never forget what happened to me, the physical and emotional trauma that I went through. The fact that other people have been in the same situation breaks my heart. Now that I have been exposed to this issue in the world and having lived through it, even if I am doing better, I cannot feel truly better until the world is informed about VSS and there are solutions for the condition.

Additionally, my academic background is in behavioral science, as well as health, multicultural, and interpersonal communication. I also got CITI program certification in Human Subjects Research (HSR), specifically Social-Behavioral-Educational Research, with a focus on qualitative data analysis, so I am highly aware of subliminal factors and placebos. I am truly open-minded but tend to approach things scientifically (professionally) and cynically (personality-wise).

All the following symptoms are resolved (from 10/10 to 1/10): 

  • Excessive floaters
  • Diplopia
  • Starbursts
  • Halos
  • Nyctalopia (my night vision is not bad anymore; rather, seeing static just obstructs my vision in general regardless of the time of day)
  • “Brain zaps” and electrical shock sensations
  • Nausea
  • Dizziness
  • Paresthesia
  • Brain fog
  • Migraine aura
  • Depersonalization

 

All of the following symptoms have improved, meaning I still have them, but they are much better:

  • Visual Snow/Static (10/10 to 3/10): Today, I still see visual snow. But my static has reduced significantly. It intensifies slightly when I am stressed, my body is experiencing hormonal fluctuations, or I am fighting a viral illness, as do all my remaining symptoms. Whereas it used to be intense and all-encompassing throughout my visual, sometimes, the static is so negligible that I forgot it is even there. I would imagine when people say visual snow is “no big deal”, this is what they see. However, I will never and can never forget how intense my static was before; it was debilitating. For countless people with VSS, that is what their static is like; I can relate to and understand exactly why it debilitates or frustrates them. 
  • Tinnitus (10/10 to 2/10); Used to be constant and now, only occurs sparingly, primarily when I am trying to sleep, stressed, or fighting a viral illness.
  • Palinopsia (still present but went from a 10/10 to a 5/10)
  • Photophobia (10/10 to 4/10); Much better compared to before, I can comfortably be outside and look at bright, dynamic stimuli; for the remaining discomfort I still have, sunglasses and FL-41 lenses/tinted sunglasses can take this from a 4/10 to a 2/10.
  • Enhanced Entoptic Phenomena (10/10 to 5/10); Still present but severity reduced; FL-41 lenses/tinted sunglasses have helped make this more comfortable.
  • Migraines (10/10 to 3/10); No longer experiencing prolonged or daily episodes with aura; now, typically 2-3 days a month in association with my hormonal cycle, and no migraine aura is present, or during prolonged sun exposure.
  • Depersonalization (10/10 to 3/10); I used to experience this symptom ceaselessly post-VSS, and it was highly uncomfortable. Today, most times, I genuinely feel present in the moment, as though I am no longer detached or there is a barrier between my physical surroundings and I; my cognitive fog has also reduced, and I can easily form or connect thoughts as I did prior to VSS.
  • Insomnia (10/10 to 5/10); I still struggle with insomnia because Erythromelalgia, unrelated to my VSS, often flares-up at night, and I sometimes get tinnitus. I mitigate this by putting a fan on, which is my cost-effective version of a white noise machine and surprisingly effective at drowning out the ringing in my ears.
  • Anxiety and Depression: While I still experience anxiety and depression, they are not caused by my VSS symptoms anymore (instead, they are caused by post-trauma and other life stresses that neurotypical individuals may also experience.) The PTSD induced by my VSS journey has also improved.
  • Sensory hypersensitivity/hyperesthesia and frequent fight-of-flight episodes induced by “sensory overload”: I was unable to tolerate the sensory input (visual and auditory stimuli) from watching television, movies, and videos, playing video games, being on the computer, being in a supermarket, or attending shows and concerts. Now, I can do all these activities. On our Tips for Managing Visual Snow Syndrome page, what has helped me personally and others with this is outlined in the “Mitigating Sensory Overload” section.

 

What has helped me achieve this a combination of methods listed below (in no order):

Note: I am not a physician, nor am I giving medical advice. These are the methods that have worked for me personally. Consulting with a qualified healthcare provider is essential for determining the most appropriate personalized approach for managing one’s condition.

  • Prioritizing and optimizing nervous system/brain health (using the methods elaborated on below)

 

  • Eliminating alcohol and caffeine

 

This was a game-changer for me early on. With my academic understanding of behavioral sciences, and qualitative research, as well as my professional and personal interest in neuroscience, I would like to offer some education that helps explain why eliminating alcohol and caffeine might be beneficial for those with VSS.

The impact of alcohol and caffeine on neurological conditions, such as VSS, is well-documented. However, as outlined here, it can vary depending on various factors, such as the individual’s specific symptoms they have, medical history, and more. Some people may find that they can tolerate moderate amounts of alcohol or caffeine without experiencing negative effects, while others may need to completely avoid these substances entirely to manage their condition.

Virtually anything that can impact the brain, specifically induce neuroplasticity, alter neurotransmitters, and cause structural or functional changes, has the potential to affect a neurological disorder like VSS. The brain, as the central control system of the body, plays a crucial role in regulating numerous bodily functions, spanning from visual processing to complex cognitive processes. 

Virtually anything that can impact the brain, specifically induce neuroplasticity, alter neurotransmitters, and cause structural or functional changes, has the potential to affect a neurological disorder like VSS. VSS has been linked to hyperexcitability in the brain and neurotransmitter abnormalities, specifically glutamatergic and serotoninergic neurotransmission. Both caffeine and alcohol can have significant effects on neurotransmitter systems in the brain, including glutamate and serotonin. In the case of individuals with neurological disorders like VSS, the disruptions in neurotransmitter balance caused by alcohol and caffeine may exacerbate symptoms. This was the case for me.

Although via different mechanisms, both alcohol and caffeine can influence glutamate and serotonin neurotransmitter systems in the brain. While acute caffeine consumption may transiently elevate serotonin levels, ongoing use can lead to alterations in serotonin receptor sensitivity and availability. Dysregulation of serotonin signaling due to caffeine intake can potentially lead to use can lead to alterations in serotonin receptor sensitivity and availability, as well as the exacerbation of non-visual VSS symptoms, such as anxiety, depression, depersonalization, and insomnia. In addition to serotonin, caffeine can also alter glutamate and block adenosine receptors, which may increase the release of other neurotransmitters like dopamine and norepinephrine. Although glutamate is essential for cognitive function, excessive levels can lead to neuronal excitotoxicity, a process where overstimulation of neurons causes cell damage or death. In individuals with VSS and other neurological conditions, excessive glutamate activity can exacerbate symptoms.

Similarly, alcohol can disrupt the balance of neurotransmitters in the brain, specifically impacting glutamate transmission and potentially worsening anxiety, depression, depersonalization, sensory disturbances, insomnia, and more. Alcohol also inhibits the activity of NMDA, or N-methyl-D-aspartate, glutamate receptors; they are linked to synaptic plasticity and memory and can impair cognitive functions. Moreover, alcohol-induced changes in glutamate transmission can worsen symptoms of visual and non-visual symptoms in many neurological conditions like VSS. Ongoing alcohol consumption can also lead to glutamate receptor expression and function adaptations. Initially, alcohol can initially increase serotonin levels and produce mood-elevating effects, but ongoing use may be linked to the dysregulation of serotonin signaling. It has also been associated with alterations in receptor density for serotonin, as well as neurotransmitter metabolism and function.

As mentioned, abnormalities in glutamatergic neurotransmission and neurological hyperexcitability have been linked to VSS, which we need more research to further understand. While acute effects may vary depending on dosage and individual differences, chronic consumption of caffeine and alcohol can lead to long-term changes in neurotransmitter signaling, potentially contributing to VSS. Personally, I found that eliminating alcohol and caffeine helped optimize neurological health by reducing excitatory neurotransmitter activity and promoting a more balanced neuronal environment. 

  • FL-41 lenses/tinted sunglasses

 

I always keep both with me. FL-41 lenses/tinted sunglasses reduce photophobia and make my remaining visual disturbances less noticeable. 

For those who may be unfamiliar, FL-41 lenses are specialized tinted lenses that are designed to help alleviate symptoms associated with light sensitivity, particularly in conditions such as migraines, photophobia, and other neurological disorders. FL-41 lenses are tinted to filter specific wavelengths of light, particularly those in the blue-green spectrum (480-520 nm). They are known to trigger or exacerbate photophobia and migraines. By selectively filtering out these wavelengths, FL-41 lenses reduce the intensity of light reaching our eyes, minimizing discomfort and visual disturbances. They also reduce glare and brightness, soften harsh lighting conditions, enhance contrast and visual comfort by improving the perception of objects, mitigate visual distortions, and reduce stress on the visual system.

Wearing them, regardless of the situation, has significantly improved my quality of life. They make a variety of environments more comfortable, especially brightly lit and visually stimulating areas, by allowing me to function daily and enjoy a variety of activities that were once a challenge after the onset of VSS. My symptoms have improved to the point where no longer wear them constantly, however, I still use them to comfortably drive on sunny days, engage in activities outdoors during the daytime, when indoors in bright rooms with harsh fluorescent lightings (especially at offices of hospitals), at the supermarket (which is visually-busy with its many visual stimuli, shapes, and colors for the brain to process at once), and when attending shows or concerts where there are triggering visuals such as strobe lights and pyro-techniques. Also effective for many people affected by neuro-ophthalmological conditions, like VSS, FL-41 lenses/tinted sunglasses provide a physical barrier that reduces the intensity of light reaching my eyes, helping to alleviate visual symptoms, the discomfort associated with photophobia, and prevent sensory overload.

  • Ear plugs

 

In addition to becoming more sensitive to sights post-VSS, I also became more sensitive to sounds. I always bring ear plugs with me to reduce the auditory input I am receiving in environments that may be triggering. By reducing auditory input, my brain can focus on visual input instead of getting overwhelmed by processing them both at once. VSS affects sensory processing, so even moderate noise can be distressing and lead to sensory overload. Earplugs act as a physical barrier that can dampen sound waves, helping to reduce auditory input, promote calmness, and filter out harmful frequencies.

Together, FL-41 tinted lenses/sunglasses, which helps with visual symptoms and visual input, and ear plugs, which assist with auditory input, can mitigate sensory overload by reducing the amount of sensory input that reaches the brain, particularly in overwhelming environments. They help keep my nervous system calm by filtering out visual and auditory stimuli that can be aggravating to those with VSS.

Noninvasive Treatments that Have Been Explored in Clinical Practice and Research

As explained in the previous question/answer, “Are there any medications/pharmacological treatments for Visual Snow Syndrome?“, thus far, pharmacological medication treatment trials tested in the VSS patient population have shown limited to no efficacy, with side effects often outweighing benefits. Exploration into further noninvasive treatment options and effective pharmacological interventions is ongoing through the Visual Snow Initiative and our Global Research Team. I have done both Neuro-Optometric Rehabilitation Therapy (NORT), or neuro-vision therapy for VSS, and Mindfulness-Based Cognitive Therapy (MBCT) aimed at alleviating VSS symptoms. I will share how both treatments impacted my VSS.

  • Neuro-Optometric Rehabilitation Therapy (NORT), or neuro-vision therapy for VSS

 

In addition to VSS, I was born with Autoimmune Dysregulation and Erythromelalgia. I am considered immunocompromised and was advised by doctors to avoid traveling during the COVID-19 pandemic. Per regulations in my location at the time, there were also travel restrictions and many of us, including myself, were abiding by stay-at-home ordinances until the pandemic improved. At the time of our 2022 VSI Summit, where we introduced Dr. Shidflosky, and Dr. Tsang’s NORT protocol, I had already scheduled my session but could not travel for the reasons outlined above. During the summit, I expressed this, as well my excitement about the promising effects of NORT and my future participation. Based on my opinion, numerous accounts from patients with VSS, existing data to support the effectiveness of neuro-vision therapy for other neurological conditions that affect vision, and expert opinions from VSS researchers, I felt comfortable sharing this therapy with our supporters. As I stated, our goal is to share information so that people affected by VSS are informed about options that can potentially benefit them; it is ultimately their choice. At this time, we were also actively working on a study to investigate NORT further. Their protocol findings were published in the study, ”The efficacy of neuro-optometric visual rehabilitation therapy in patients with visual snow syndrome” in Frontiers in Neurology.

As the pandemic improved and things began to open up again, I took time to address my Autoimmune Dysregulation and Erythromelalgia, both of which flared-up for the first time in a while, likely triggered by the stress I was going through at the time. Once my medical circumstances had stabilized and it was safer for immunocompromised individuals, I began NORT sessions. I completed the full program, which was designated as 12-weeks long based on my symptoms and medical history. Moreover, I tried my best to remain as consistent as possible with the program, as I knew this would be an important consideration when accurately measuring its potential effectiveness.

Although the severity of some of my VSS symptoms got better with time and I also adjusted to them mentally, there were many symptoms that did not improve at all. However, through NORT, I encountered many firsts, with my diplopia, starbursts, and halos around objects becoming so negligible to the point where I consider them resolved. NORT primarily helped improve my visual symptoms, including visual snow/static (this change was slight; NORT did not entirely resolve this symptom), palinopsia/afterimages, nyctalopia, and visual distortions. My vision acuity and sharpness increased, with objects becoming more defined and identifiable even with the light layer of static that remained. I also began experiencing less headaches, as well as dry eye and eye fatigue, which are not considered symptoms of VSS, but I still wanted to note since it was part of the process. NORT did not directly improve any of my non-visual symptoms. However, NORT improved my vision; thus, improving my quality of life and alleviating non-visual symptoms like anxiety and depression as a byproduct, as well as reduced my sense of depersonalization.

  • Mindfulness-Based Cognitive Therapy (MBCT) to alleviate VSS symptoms

 

We had funded Dr. Sui Wong’s MBCT-VSS research, but I had not undergone MBCT. Although her results had not yet been published publicly, the neuro-ophthalmological community and founding members of our VSS Global Research Team were praising her unpublished findings, which were shared at the annual meeting for NANOS, the North American Neuro-Ophthalmological Society. Dr. Wong’s study in collaboration with the Visual Snow Initiative and Guy’s and St Thomas’ NHS Foundation, “Visual Snow Syndrome Improves With Modulation of Resting-State Functional MRI Connectivity After Mindfulness-Based Cognitive Therapy: An Open-Label Feasibility Study”, was published in the Journal of Neuro-Ophthalmology.

Although NORT improved my overall vision and quality of life, as well as reduced many of my visual symptoms, some of my non-visual symptoms persisted. I was curious if MBCT could also help me improve my condition further, potentially targeting not only non-visual but visual symptoms as well. On a personal note, as corny as this may sound, I feel like MBCT made me a better person, physically and mentally. MBCT helped tremendously with non-visual symptoms such as anxiety, depression, depersonalization, brain fog, paresthesia, insomnia, and sensory disturbances. While I tried to remain as objective as possible, I did anticipate that MBCT may help my non-visual symptoms and was happy that they did. However, much to my surprise, I also experienced a further reduction in my visual snow/static and tinnitus after completion of my program, which I did for roughly 2 months. I completed the full regimen, although not exactly on schedule as I had to rearrange a few sessions to different days. MBCT also helped me manage catastrophic thinking, which helped improve the PTSD I developed due to my harrowing VSS journey. I still utilize the practical tools and mechanisms I learned through MBCT in my daily life, which is a welcome bonus (unrelated to VSS of course but relevant to the assessment of how this treatment affected me).

  • Shifting my focus away from visual disturbances and concentrating on the people, places, or objects beyond them (doing this became easier post-NORT)

 

Consistently practicing this technique has reprogrammed my brain by teaching it that VSS symptoms, while uncomfortable, are not threatening. Though it may require self-discipline, with time, your brain can learn to “tune out” visual disturbances, making them less prominent to you. This cognitive approach is also supported by changes in neurotransmitter activity. By redirecting attention and reducing fear responses associated with visual disturbances, you can modulate the release of neurotransmitters, such as serotonin and dopamine, which are involved in mood regulation and perception. It can be a conscious, deliberate effort for some people, whilst others must make a concerted effort and go out of their way to achieve this. During the initial days of my VSS journey, through this approach, like others who have utilized it, I experienced enhancements in quality of life, comfortability, and daily functioning, as well as minimal to no awareness of symptoms over time. This became second-nature post-NORT, which helped my vision acuity and sharpness, making objects beyond my visual disturbances easier to focus on now that they were more defined and identifiable.

  • Getting sufficient sleep whenever possible and changing my sleep environment, so it accommodates my VSS

 

Whenever I get less than 5 hours of sleep, my VSS becomes noticeably worse. People may not realize it, but getting sufficient sleep is essential for maintaining optimal neuro-ophthalmological health, which encompasses the complex interactions between the nervous system and the visual system. For example, the brain and eyes are closely interconnected, with the visual system transmitting information to the brain for processing and interpretation. Sleep deprivation can disrupt this communication, leading to impairments in visual perception, attention, and cognitive processing. Adequate sleep supports efficient brain-eye communication, promoting optimal visual function and cognitive performance. Sufficient sleep and its quality may promote brain health and resilience in neuro-ophthalmological disorders, which can help support neuronal repair, synaptic plasticity, and cognitive function. Sufficient sleep also promotes optimal visual processing and integration, which is essential for tasks such as object recognition, spatial awareness, visual attention, processing speed, reaction times, and depth perception. It can also help prevent eye fatigue and strain, reducing the risk of symptoms such as diplopia and other visual disturbances associated with VSS.

My insomnia improved once my VSS symptoms did as well. However, I still struggle with insomnia (as mentioned above) due to my other preexisting medical conditions and my remaining yet far more infrequent VSS symptoms such as tinnitus. If possible, I try to avoid heat and create a colder environment in my bedroom, which is optimal for sleep. Although some people with VSS prefer to sleep in a dark environment, I prefer to have a dim light source on while I sleep, because it helps mask the visual symptoms I have left. While white noise machines can be more effective overall, leaving a fan to help drown out tinnitus so it is less noticeable, is a cost-effective alternative; that is what I use when trying to go to sleep. Although I try to avoid screen time before bed, sometimes. I still want to watch shows, and videos, or scroll on my phone. In this case, I always also use a chromatic filter or adjust the brightness and the temperature of my devices before bedtime; this way, I can filter out light that can contribute to eye strain, insomnia, and sleep disturbances.

  • Chromatic filters

 

Years ago, when I first got VSS, I was fearful that screen time on my computer or phone would make my condition worse. Personally, other than prolonged screen time sometimes inducing migraines and contributing to eyestrain, my VSS symptoms do not get worse when I am using my computer or phone. Nonetheless, I still use chromatic filters on my devices in the interest of keeping things this way and preserving my eye health. For those who may be unfamiliar, chromatic filters can be used on electronic devices to help conserve eye health, improve sleep quality, reduce the risk of eye damage, minimize disruption of circadian rhythms, and enhance visual comfort. I adjust the color temperature of my device screens accordingly, which reduces blue light emission. I now comfortably use my phone, watch shows and videos, go on the computer, and play video games.

  • Prioritizing stress reduction (realistically)

 

Obviously, nobody likes stress, and it is nearly impossible to avoid; everyone experiences it at some point. But in the case of VSS, stress has a direct impact on VSS symptoms, causing them to worsen. For the reasons why, please see the following question/answer: Does stress make Visual Snow Syndrome (VSS) worse? – I establish boundaries and remove myself from stressful situations whenever possible if they are making my VSS symptoms worse. Sometimes we must endure, but if I have the choice, I will choose to look out for my health. Other times, if I still feel capable despite a flare-up in symptoms, I may push through the stress and accept the consequences. 

I believe that in our society, stress is inevitable. I accept that it will impact physical and mental health at times, my VSS symptoms included. During these moments, I try to remind myself that my VSS, even if it temporarily flare-ups due to stress, will eventually return to baseline, which it inevitably always does in my case. I refuse to live my life completely void of stress because that means I am not truly living. Stress, however unfortunate, is part of the human experience. I remember that I have limits, and there may be negative health consequences for me if I am chronically stressed. Having learned the hard way, although I work hard and am exposed to stresses as we all are, I also try to make a conscious effort to take breaks (if possible and if I need them), communicate with others about my health, and reach out for support, assert boundaries when necessary, and engage in activities that promote nervous system health or calmness. These can vary from person to person, relaxing in naturalistic environments, photography, watching cute animal videos, drawing/painting, and unwinding with friends and family.

  • Light-moderate exercise

 

Personally, I do not engage in intense exercise because it causes fluctuations in my VSS symptoms. However, the right amount of exercise for me, which is light-moderate exercise, has helped improve my VSS symptoms. I do not want too great of a physical strain on my body, just to remain physically and mentally healthy while deriving the neurological benefits. 

Exercise positively influences brain health by affecting neurotransmitter systems, such as serotonin, dopamine, and norepinephrine, as well as proteins involved in neuronal function, such as Brain-Derived Neurotrophic Factor (BDNF), which plays a significant role in neurological disorders. Essential for nervous system health and function, supporting neuronal growth, synaptic plasticity, mood regulation, and cognitive function, BDNF production can be induced through physical activity. Regular exercise has also been linked to improvements in various cognitive functions, including memory, attention, sleep quality, reduced risk of neurodegeneration, stress reduction, executive function, and enhanced brain plasticity. Particularly with aerobic exercise, blood flow to the brain, neurogenesis, and synaptic plasticity, are stimulated.

  • Reframing my mindset, adopting a different perspective, and channeling my feelings into being proactive + Additional question: How do you feel about the term, “VSS sufferer”?

 

Amidst the challenges of Visual Snow Syndrome (VSS), I remember that I still possess the capacity to adapt and find joy in life. Having a medical condition may alter your path, but it doesn’t diminish your value as a person. Our experiences, strengths, and contributions matter, and we have the capacity to create a meaningful and fulfilling life despite the challenges we may face. Focus on what you can control and find ways to adapt to the changes that come with VSS. Even if it might be difficult, you can still find ways to enjoy yourself.


During the early days of my VSS journey and the 2018 Visual Snow Conference, I initially self-identified as a “VSS sufferer”. Thereafter, I was inspired by a suggestion from Matthew Renze, friend of the VSI and the first person with VSS I ever met in-person. His encouragement empowered me to reframe the following thought: instead of saying I “suffer” from VSS, I began to say I “have” VSS (or I am “living with” VSS). Although it may be cathartic or resonate for some, which is completely valid, personally, I no longer use the term, “sufferer” when referring to myself and my VSS. The language we use matters and can have a psychological impact on us, whether we are conscious of this or not. Some people may feel that continuously identifying as a “sufferer” is not constructive, reinforcing feelings of helplessness, hopelessness, and victimization. It can also contribute to a sense of powerlessness and hinder efforts to cope effectively with the challenges associated with the condition. However, everyone is different, and the term, “sufferer” may resonate strongly for some.


Yes, I have Visual Snow Syndrome, but the condition doesn’t entirely define me, nor do any of the associated challenges it may cause me. In fact, I personally think that the perseverance I exhibit despite having VSS is worth highlighting to myself more than any potential suffering the condition causes. This constructive verbiage can help shift the focus away from the condition itself and emphasizes one’s sense of agency, strengths, and ability to adapt and thrive despite challenges. I believe life is about facts, nuance, and balance; if I acknowledge the bad, I also make a concerted effort to acknowledge the good.
Describing oneself solely in terms of a medical condition or the suffering it causes may lead to a limited sense of identity. It can overshadow other aspects of one’s personality, interests, and accomplishments; this reduces self-esteem and self-worth. Additionally, using terminology such as, “sufferer”, can perpetuate stigmatization and negative stereotypes associated with VSS. It might reinforce the perception that individuals with VSS are defined by their suffering, rather than recognized as whole and multifaceted individuals with a diverse array of symptoms that range in severity. Of course, as I mentioned, people can self-identify however they choose, and the terminology that suits them best is completely valid.


Rather than dwelling on the negatives of VSS, it’s helpful for me personally to focus on what I am capable of and the things that bring me fulfillment. While it’s natural to experience negative emotions in response to symptoms, I try to reframe these thoughts to reduce stress, avoid flare-ups, stabilize my condition, and improve my emotional and physical well-being. I encourage others to utilize healthy coping strategies, seek inspiration from VSS stories, and connect with others for support and shared coping techniques. Acknowledge your strengths, celebrate personal victories, and be kind to yourself during the tough times. It’s okay to have bad days and take time for yourself when possible. Empower yourself with positive reinforcement, knowledge, and advocacy. Give attention to your achievements, no matter how small they may seem. Adopting a realistic, yet positive mindset, exhibiting resilience, and embracing healthy coping mechanisms has helped me navigate the challenges of VSS more effectively.


Just as I did, I would encourage others to stay informed about their condition and take an active role in managing their health. You can educate yourself about the latest research, treatment options, advocacy efforts, lifestyle changes, and self-care practices that can help improve your quality of life. Empowering yourself with knowledge and advocating for your needs within the healthcare system can not only help you, but millions of people around the world.


As I mentioned, my VSS does not define me, and neither do any of my other medical conditions. However, they do affect me and have significantly altered the course of my life. While I could not control what was happening to me, I could control my response. I had to break down then chose to pick myself up and channel my feelings into activism. My life may have significantly changed, but it didn’t end the day I got Visual Snow Syndrome. I knew my circumstances would never change unless I took action to change them. In pursuit of establishing the hope, research, resources, and solutions I wished were available when I first got VSS, I founded Visual Snow Initiative. Personally, I channeled my frustration and trauma caused by VSS into activism. In pursuit of improving my condition and helping others, I used my pre-existing academic knowledge and professional skills, learned about neuroscience, researched methods supported by science to improve my health, and implemented them when I could. While thankfully my condition has improved, I will never forget the impact it has had on me and the effect it continues to have on people of all ages around the world.


If I had not gotten Visual Snow Syndrome (VSS), I would not know how important it is to take action, and there would be no Visual Snow Initiative. Although I wish I had never gotten VSS, I am also proud of myself for not just accepting my fate and turning a negative experience into something new, solution-oriented, results-driven, and positive. Thank you to everyone who has supported and continues to support the Visual Snow Initiative. It means the world to me, and I’m so grateful you’ve been by my side throughout this journey. Together, I know we can continue to make the world a better place for those affected by VSS.

  • Many of my symptoms resolved or improved with time. While this has also been the case for some people with VSS, it is not the case for everyone.

 

Personally, there was no one method that improved all aspects of my VSS, but rather, a series of them that collectively improved both my visual and non-visual symptoms, with some even resolving altogether. However idealistic, I am hopeful that in the future, we can find a cure, pharmacological intervention, and/or potentially a noninvasive treatment that resolves all aspects of VSS for every case of the condition.

Everyone’s VSS is unique to them based on their specific symptoms, the intensity of these symptoms, when they got the condition, medical history, their personal journey, and more. As mentioned, this is just what has helped me personally. There were many agonizing days that I never thought my situation would get better. I’m happy to have experienced improvements and progress. While others with VSS have too, there are still many individuals with the condition globally whose symptoms remain the same and continue to negatively impact their quality of life. After being asked about it, I am sharing information regarding what has helped me to provide others with more knowledge; that way, with guidance from a qualified medical professional, people who may be unaware can learn about available methods and decide what is best for them based on their specific symptoms and medical history. Despite any improvements I may experience in my condition, my dedication to facilitating further research and viable treatment options (both pharmacological and noninvasive), as well as my pursuit of knowledge about VSS, all remain unwavering. I am passionate about finding out more about VSS, advocating for positive reforms within the medical system, and creating additional physician-patient resources. I hope that in the future, through our collective efforts and research, a cure for us all will be found.

More Answers to Questions

In addition to my other Q&A articles and all the resources I shared within this article, on the Visual Snow Initiative YouTube channel, specifically the VSS News Video Series and The Cure of Understanding Video Series, our team of experts provide answers to a wide range of additional questions related to Visual Snow Syndrome and the Visual Snow Initiative. For any further inquiries, please visit our Contact page: Contact the VSI Team.

Thank you again to everyone who submitted their questions and participated in my Q&A!

-Sierra Domb

(You can access the latest Q&A articles and more information on www.sierradomb.com.)

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