Tips for Managing Visual Snow Syndrome | Visual Snow Initiative (2024)

FL-41 lenses/tinted glasses are designed to help alleviate symptoms associated with light sensitivity, such as photophobia and migraines. Utilized to mitigate the visual disturbances caused by neurological disorders, such as VSS, FL-41 lenses block and filter wavelengths of light, particularly those in the blue-green spectrum (480-520 nm), that can trigger or worsen many VSS symptoms. By selectively filtering out these wavelengths, FL-41 lenses reduce the intensity of light reaching the 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.

They also help to make environments that are normally challenging for people with VSS more comfortable. These include: brightly lit and visually stimulating areas like the outdoors, hospitals or offices with harsh fluorescent lights, supermarkets (where there are many colors, shapes, and other stimuluses for the brain to process), and shows/concerts (where there are strobe lights and pyro-techniques). VSS patients have also reported that FL-41 lenses help them tolerate activities like driving, being on the computer, and watching forms of media, such as shows, movies, or videos, which may contain prominent visual stimuli.

FL-41 lenses are widely available in commercial stores and online. Additionally, the VSI hopes to develop a brand of FL-41 tinted glasses specifically designed for individuals with VSS.

Chromatic filters are designed to block or reduce specific wavelengths of light, which can cause visual discomfort and exacerbate VSS symptoms. Chromatic filters can help conserve eye health, increase sleep quality, reduce the risk of eye damage, minimize disruption of circadian rhythms, and enhance visual comfort when using electronic devices, such as smartphones, laptops, and tablets.

Adjusting the color temperature of the screen on your device can reduce blue light emission, which can be particularly helpful before bedtime, especially if you still want to use electronics prior to sleeping.

Many devices offer built-in options to adjust the screen’s color temperature or apply chromatic filters. There are also applications and screen protectors that can apply chromatic filters to your device.

Because VSS affects sensory processing, individuals with VSS often experience heightened sensitivity to external stimuli, such as sights and sounds. Between seeing constant flashing lights and afterimages, as well as experiencing non-visual symptoms such as paresthesia and tinnitus, the body/brain of someone with VSS has to process more information than average. Because VSS causes sensory processing abnormalities and there is so much more stimuli people with VSS have to process on top of that which is already present in daily life, they are prone to sensory overload. Sensory overload occurs when the body/brain is exposed to more information than it can handle, making the person feel overstimulated and overwhelmed. This can trigger a “fight-or-flight” response, severe discomfort, irritability, anxiety, or panic attacks that makes the individual feel the need to immediately escape the situation or remove the irritating stimuli causing these sensations. Common triggering environments include crowded, visually-busy, or noisy areas such as grocery stores, malls, city streets, concerts, etc.

Here are some ways that can help reduce the heightened sensory experience to make you feel more comfortable:

• To combat noise, use ear plugs or noise-canceling headphones. If you forget to bring either, if it is safe to do so in the environment, you can cover your ears.
• To combat bright lights, wear sunglasses or tinted lenses (even indoors). If you forget to bring either, if it is safe to do so in the environment, you can close your eyes.
• If you can, excuse yourself from the situation and take a break to calm your nervous system.
• Distract yourself from the stress in the moment by utilizing a fidget tool (you may carry this with you), deep breathing, or guided imagery.
• While it may be impossible to avoid sensory-triggering environments altogether, it is important to look out for yourself by choosing sensory-friendly activities/events when you can. Your well-being is important and you can establish boundaries.
• In addition to your doctor, consider sharing how you are feeling with a friend or family member whom you feel comfortable with. They can become aware of what you are going through and potentially offer support in these situations.

Light to moderate physical activity can have numerous benefits for individuals with Visual Snow Syndrome (VSS) and other neurolgical conditions. The neurological benefits of exercise are well-documented.

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, oxygenation, neurogenesis, and synaptic plasticity, are stimulated, which may help improve visual function and manage VSS symptoms. Exercise also releases endorphins.

It must be noted that individuals with VSS should engage in physical activity that is appropriate for their level of fitness and does not exacerbate their symptoms. It is important not to overdo it, as some patients have reported intense exercise caused their VSS symptoms to fluctuate. However, many VSS patients have reported an improvements in their symptoms through light to moderate exercise. Before starting any new exercise routine, please consult with a healthcare provider.

Lack of sleep and poor sleep quality, especially over a prolonged period of time, can cause VSS symptoms to intensify. Getting sufficient sleep is essential for maintaining optimal neuro-ophthalmological health, which encompasses complex interactions between the nervous system and the visual system. Sleep is an important consideration for overall health, but especially in the case of brain and eye-related conditions like Visual Snow Syndrome.

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 also help promote brain health and resilience in neuro-ophthalmological disorders, which can support neuronal repair, synaptic plasticity, and cognitive function. Moreover, sufficient sleep can contribute to 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.

Additionally, it can be helpful to establish healthy sleep habits, such as avoiding caffeine and alcohol before bed, setting a regular sleep schedule, getting enough hours of sleep to function, and creating a comfortable sleep environment that suits your symptoms.

Specific tips regarding how to make your bedroom VSS-friendly can be found below.

Making your bedroom VSS-friendly can help you achieve more restful sleep and minimize symptoms of VSS.

Here are some strategies that may help according to patients:

• Keep your bedroom dark and free from unnecessary visual stimuli, such as bright lights or flashy patterns. You can use curtains to block outside light sources.
• If complete darkness makes your visual disturbances more prominent, then you may prefer having a dimly-lit bedroom or a faint light source nearby, which can help make them less noticeable.
• Avoid using screens before bed as the blue light emitted can disrupt your sleep cycle.
• You can also change your device to Night Shift mode. It automatically shifts the colors of your display to the warmer end of the color spectrum after dark, which may help you get a better night's sleep. (This feature can vary per device.)
• Use a white noise machine or fan for managing tinnitus. These options can help reduce the perception of tinnitus by masking the ringing or buzzing sound.

A healthy diet can play an important role in neurological health and overall wellbeing, potentially reducing excitatory neurotransmitter activity and promoting a more balanced neuronal environment.

A diet rich in fruits, vegetables, whole grains, lean proteins, and healthy fats can help support brain health, reduce inflammation, and boost your immune system.

Many patients with VSS have reported that avoiding certain foods or substances, specifically caffeine, alcohol, and processed foods, has helped.

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. 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, possible affecting VSS.

Proper hydration is also crucial for maintaining cognitive function, so it is encouraged to drinking plenty of water throughout the day.

High stress levels can cause VSS symptoms to worsen. Stressful events, either physical or mental, often affect the intensity of VSS. Generally-speaking, stress can initiate flare-ups and worsen the symptoms associated with a variety of medical conditions; the same is true for VSS. Stress may impact the nervous system and induce neurotransmitter alterations within the brain, sofinding a way to reduce it is essential to managing the condition.

While it may be difficult to avoid stress altogether, engaging in healthy activities that promote joy and relaxation can help people with VSS effectively calm their nervous system, mitigate the intensity of their symptoms, reduce the chance of flare-ups, and improve overall wellbeing.

Stress-reducing activities, therapeutic interventions, and lifestyle changes that calm the autonomic nervous system have been reported to have positive effects for many VSS patients, reducing or stabilizing symptoms.

Examples of some practical stress-reducing activities that have helped people with VSS include:

• Deep breathing exercises
• Meditation
• Yoga
• Drawing/painting
• Engaging in other safe, relaxing, and fun hobbies

Redirect your attention away from the visual disturbances and focus on the people, places, or objects behind them. Practicing this consistently teaches your brain that VSS symptoms, while uncomfortable, are not dangerous.

This may take self-discipline, but over time, your brain can get accustomed to “ignoring” the visual disturbances, which will make them less noticeable to you.

Many people with VSS have reported a significant improvement in quality of life, comfortability, and daily function using this method, so much so that they seldom or no longer notice their symptoms.

Shift your mindset to understand that, despite the challenges of VSS, you still have the potential to adapt and enjoy life. Try to avoid fixating on the negatives of VSS and concentrate on what you can do.

It can be tough not to have a negative emotional response to your symptoms. Negative emotions and frustrations are valid and understandable, but can increase stress and worsen VSS symptoms. When possible, reframe negative thought patterns to improve your overall wellbeing.

Use healthy coping strategies and positive outlets. Empower yourself with inspiring VSS stories and educational content. Offer positive self-affirmations for daily achievements, big or small. Connect with others in similar situations for mutual support and shared coping techniques.

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