Sierra Domb Q&A – Part 1 – Visual Snow Syndrome: VSI Research and Treatments

Q: Are there any medications / pharmacological treatments for Visual Snow Syndrome?

Despite sometimes having different approaches to the treatment of Visual Snow Syndrome (VSS), neurologists, neuro-ophthalmologists, ophthalmologists, and optometrists unanimously agree that more research investigating VSS, specifically its pathophysiology, as well as further understanding its biomarkers and underlying mechanisms as a network disorder, is necessary before pharmacological treatments designed to treat VSS can be identified. Previous studies and clinical trials, which explored the use of currently available pharmacological interventions in the hopes of treating VSS symptoms, were relatively ineffective (meaning they either did not work for most patients with VSS for or they did not work at all). In addition, most caused harmful side effects, posing risks to patients’ overall health and often worsening their VSS symptoms. Moreover, 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. Additionally, the first documented cases of patients developing visual snow/static vision were linked to a medication called digitalis by Frank D. Carroll, who published his report in the Transactions of the American Ophthalmological Society in 1994. Experimentation with medications when we do not fully understand the condition can be dangerous, particularly in the case of medicines that can affect the entire nervous system. This underscores the need to be careful and understand the condition to a greater degree before introducing pharmacological interventions.

Additionally, conducting studies to explore treatments for VSS requires researchers equipped with funding, access to testable interventions (pharmacological or noninvasive), and expertise in the condition. Not all medical professionals, healthcare entities, or pharmaceutical organizations possess these requisites. Despite the recent scientific validation and increased awareness, education, resources, and studies for VSS, only a handful of global researchers specialize in the condition. The Visual Snow Initiative (VSI) supports the multifaceted and comprehensive work of researchers with expertise in VSS. They are considerate of the complexities of VSS, as well how any tested treatment modalities can potentially impact the health of study participants and interact with the underlying mechanisms of VSS.

Through studies funded by the VSI, such as our ongoing collaborative research led by VSS research pioneers Dr. Francesca Puledda at King’s College and Dr. Christoph Schankin at the University of Bern Hospital (Articles: Active VSI-Funded Visual Snow Syndrome Research Studies and 4 VSI-Funded Research Studies), investigations regarding neuroimaging, the pathophysiology, biomarkers, and underlying network mechanisms for VSS are underway. Research funded by VSI is not only being conducted to gain more valuable knowledge about VSS but also to use these insights to identify and/or develop pharmacological interventions for VSS. However, considerations such as safety for VSS patients and efficacy are of the utmost importance. In the future, in addition to more effective noninvasive treatment options, as more information is revealed via studies, it is a strong possibility that pharmacological interventions to specifically treat VSS will become available. Post development, their availability, and cost (if any), however, may vary per country, as countries can have different healthcare systems and medical regulations; this is another factor to consider.

More Information About Pharmacological Interventions According to VSS Researchers

From the Current Opinion in Neurology article titled, “Visual snow syndrome: recent advances in understanding pathophysiology and potential treatment approaches”, by Christoph J. Schankin, Antonia Klein, and Sarah A. Aeschlimann (DOI: 10.1097/WCO.0000000000001258)

Only few treatment studies are currently available demonstrating limited response to medication and even worsening or triggering of visual symptoms by certain antidepressants and benzodiazepines. Promising nonpharmacological treatments include mindfulness-based cognitive therapy, the use of chromatic filters, neuro-optometric rehabilitation therapy or oculomotor-based vision therapy, and visual noise adaptation. Although there has been recent progress, we still have not fully understood the nature of VSS. Further research is needed on a clinical and pathophysiological level to successfully treat the condition, particularly with the use of potential pharmacological interventions.

A retrospective overview over 400 cases and treatment responses to different medications could not identify any drug to be helpful in a significant portion of patients, most had no effect. Single cases of amelioration under lamotrigine or benzodiazepines were found (1). On the other hand, there is evidence of developing persistent visual problems in association with serotonin reuptake-inhibiting antidepressants (SSRIs) like citalopram [2]. A study examined patient-reported visual problems associated with SSRIs and found 124 reports from 18 countries [3]. The most commonly reported side effects included blurred vision, night blindness, and floaters with significant impact on daily life and work for the affected patients. Remarkably, some patients reported persistent visual problems even after stopping the drug. The study highlights the need for healthcare professionals to be aware of these potential side effects. Interestingly, Naguy et al.[4] described a case of a child with ADHD who developed visual snow phenomenon, photopsia, and tinnitus under treatment with methylphenidate, a noradrenaline and dopamine reuptake inhibitor. The symptoms were reversible during tapering and appeared to correlate with the dosage [4].

In a case series, three patients presented with visual snow associated with acute ischemic stroke, two of whom had a history of migraine with visual aura. The ischemic strokes affected different areas involved in visual processing including the lingual gyrus suggesting that the lingual gyrus is important for visual snow. However, these patients did not show the full picture of VSS underscoring the complexity of VSS as a network disorder [5].

Research over the last two years has provided valuable knowledge about the pathophysiology of visual snow syndrome. Cortical hyperreactivity in visual brain areas has been demonstrated and points to a network disorder rather than a focal pathology. Imaging studies using advanced techniques, such as 7-Tesla MRI and FDG-PET/MRI, have shown microstructural and functional connectivity differences in cortical and thalamic regions suggesting the involvement of thalamocortical circuits in the pathophysiology of VSS. Additionally, the involvement of glutamatergic and serotoninergic neurotransmission in VSS pathophysiology has been highlighted, shedding light on potential underlying mechanisms. Promising treatment approaches such as MBCT, the use of tinted glasses and research on adaption effects might reduce the perceived intensity, duration, and frequency of visual snow. Pharmacological attempts have been frustrating so far, but our improved understanding of the pathophysiology combined with neuroimaging might, in the future, point to more customized treatment approaches.

References:

(1) Puledda, F., Vandenbussche, N., Moreno-Ajona, D., Eren, O., Schankin, C. and Goadsby, P.J., 2022. Evaluation of treatment response and symptom progression in 400 patients with visual snow syndrome. British Journal of Ophthalmology, 106(9), pp.1318-1324.

(2) Eren, O.E., Schöberl, F., Schankin, C.J. and Straube, A., 2021. Visual snow syndrome after start of citalopram—novel insights into underlying pathophysiology. European journal of clinical pharmacology, 77(2), pp.271-272.

(3) Healy, D., Mangin, D. and Lochhead, J., 2022. Development and persistence of patient-reported visual problems associated with serotonin reuptake inhibiting antidepressants. International Journal of Risk & Safety in Medicine, 33(1), pp.37-47.

(4) Naguy, A., Naguy, C. and Singh, A., 2022. Probable methylphenidate-related reversible “visual snow” in a child with ADHD. Clinical Neuropharmacology, 45(4), pp.105-106.

(5) Scutelnic, A., Slavova, N., Klein, A., Horvath, T., de Beukelaer, S.A., Arnold, M., Jung, S. and Schankin, C.J., 2023. Symptomatic visual snow in acute ischemic stroke: A case series. Headache: The Journal of Head and Face Pain, 63(1), pp.173-176.

From the Advances in Ophthalmology and Optometry article titled, “Visual Snow Syndrome: Visual Consequences Diagnosis, and Treatment”, by Kenneth J. Ciufredda, OD, PhD, FARVO, FCOVD-A, FAAO, Diplomate in Binocular Vision, FNAP, Barry Tannen, OD, FAAO, FCOVD, Noah Tannen, OD, FCOVD, FAAO, and Daniella Rutner, OD, MS, MBA, FAAO, FCOVD, FNAP, Diplomate ABO, at SUNY College of Optometry.

The lack of a well-defined pathophysiological mechanism and related anatomic substrates has hindered the development of targeted medication-based treatments for VS/VSS. The breadth of studies investigating pharmacologic management indicates that only a minority of patients benefit from medications. In some trials, however, medications have exacerbated the symptoms [6]. Prospective studies have been rare, with most data coming from case reports, case series, and retrospective cohort studies, which make comparisons difficult [7]. The primary focus has been on anticonvulsants, with lamotrigine showing mixed results. Additional pharmaceutical treatments have included calcium-channel blockers, beta blockers, diuretics, benzodiazepines, antidepressants, triptans, antipsychotics, nonsteroidal anti-inflammatory medications, antiplatelet agents, antibiotics, antifungals, muscle relaxants, and vitamins/nutraceuticals. Patients with VS/VSS may be understandably reluctant to take these medications due to concerns about potential adverse effects. 

Anticonvulsants include lamotrigine, topiramate, gabapentin, pregabalin, and valproate. Results have been mixed at best, with lamotrigine and topiramate showing the greatest therapeutic effect. In one study of 26 patients taking lamotrigine, 19.2% reported partial remission of their symptoms [8]. Another systematic review found lamotrigine to be partially effective in 8 of 36 patients, Table 2 The three most commonly used medications for visual snow syndrome Most common Medication in order of use Name of Medication 1. Lamotrigine 2. Verapamil 3. Acetazolamide VISUAL SNOW SYNDROME 13 followed by topiramate in 2 of 13 patients [9]. However, a survey conducted by Puledda and colleagues did not confirm this trend [10]. Although lamotrigine and topiramate had an improvement frequency of 21% and 18%, respectively, up to 35% of patients also reported a worsening of symptoms. Although the mechanisms of action vary between these medications, anticonvulsants modulate various aspects of synaptic transmission, stabilizing neuronal membranes and reducing abnormal synaptic activity in the brain. Lamotrigine down-regulates glutamate, which is known to propagate cortical spreading depression in migraine. It is thought that reduced neuronal hyperexcitability may result in less overactivity in the regions of the brain contributing to VS/ VSS. However, these medications are not without side effects. The most common side effects include nausea, dizziness, drowsiness, fatigue, and headache. More serious side effects, such as Stevens–Johnson syndrome, also can occur [11]. 

Antihypertensives include calcium channel blockers, such as verapamil and flunarizine, and beta-blockers, namely propranolol. Scattered case reports have found these to have a partial benefit for some patients. For example, Puledda and colleagues [10] found the proportion between the total number of reported improvements and the total number of reported worsening (ie, the therapeutic ratio) to be 1.6:1. Support for these medications remains scarce. 

Diuretics include acetazolamide and furosemide. This class of drugs has shown some degree of effectiveness in patients with migraine, migraine with aura, and persistent visual symptoms related to migraine in limited case studies [12]. Yet, there remains no evidence for their effectiveness in patients with VS/VSS. Acetazolamide, a carbonic anhydrase inhibitor, decreases the production of cerebrospinal fluid and reduces intracranial pressure while promoting the dilation of blood vessels. Furosemide inhibits the cellular membrane Naþ/K þ – ATPase pump, which disrupts extracellular potassium accumulation. Both medications decrease the susceptibility of neurons to cortical spreading depression. Common side effects include extremity paresthesias, lightheadedness, dry mouth, gastrointestinal disturbances, hypotension, hyperglycemia, polyuria, metabolic acidosis, and renal dysfunction [12].

The increased recognition and diagnosis by professionals and others of this unusual condition, and its treatment, bodes well for the future of the patient with VSS. Their treatment options will expand as our basic and clinical understanding of the condition increases.

References:

(6) Puledda, F., Vandenbussche, N., Moreno-Ajona, D., Eren, O., Schankin, C. and Goadsby, P.J., 2022. Evaluation of treatment response and symptom progression in 400 patients with visual snow syndrome. British Journal of Ophthalmology, 106(9), pp.1318-1324.

(7) Yoo YJ, Yang HK, Choi JY, Kim JS, Hwang JM. Neuro-ophthalmologic Findings in Visual Snow Syndrome. J Clin Neurol. 2020 Oct;16(4):646-652. https://doi.org/10.3988/jcn.2020.16.4.646

(8) Van Dongen, R.M., Waaijer, L.C., Onderwater, G.L., Ferrari, M.D. and Terwindt, G.M., 2019. Treatment effects and comorbid diseases in 58 patients with visual snow. Neurology, 93(4), pp.e398-e403.

(9) Eren O, Schankin CJ. Insights into pathophysiology and treatment of visual snow syndrome: A systematic review. Prog Brain Res 2020;255:311–26.

(10) Puledda F, Vandenbussche N, Moreno-Ajona D, et al. Evaluation of treatment response and symptom progression in 400 patients with visual snow syndrome. Br J Ophthalmol 2021;106:1318–24.\

(11) Van Dongen RM, Waaijer LC, Onderwater GL, et al. Treatment effects and comorbid diseases in 58 patients with visual snow. Neurology 2019;93:e398–403.

(12) De Simone R, Marano E, Di Stasio E, et al. Acetazolamide efficacy and tolerability in migraine with aura: a pilot study. Headache 2005;45:385–6.

Q: Are you funding research into noninvasive treatments or medications for VSS?

Yes, both. We are currently funding research exploring possible biomarkers, the pathophysiology, and treatment options for VSS, which include both pharmacological and noninvasive interventions. For more details, please access the following articles: Active VSI-Funded Visual Snow Syndrome Research Studies and 4 VSI-Funded Research Studies on Visual Snow Syndrome.

Many patients allegedly attributed the onset of their VSS to medications, specifically SSRIs, benzodiazepines, anti-convulsants, and other drugs that target the neurological system. Some of them are wary towards medications, as are others who want to avoid side effects of potentially making their VSS worse until research discovers there is a medication which can help VSS across the board. Some people with VSS are only interested in medications. For more information regarding pharmaceutical interventions related to VSS, please read the answer to the question, “Are there any medications/pharmacological treatments for Visual Snow Syndrome?“(listed above).

People’s preferences for medication versus noninvasive treatments can stem from a variety of factors, including the nature of their condition, personal beliefs, past experiences, and cultural influences. Some people may have had positive experiences with medication in the past and find that it effectively manages their symptoms for other conditions. They may be looking for this same scenario when it comes to VSS. Conversely, others may have tried medication without success or experienced adverse side effects, leading them to seek noninvasive treatments. Concerns about potential side effects or long-term risks associated with medication can also influence individuals to prefer noninvasive treatments that carry fewer risks or have minimal adverse effects. Concerns about dependence or tolerance to medication may lead individuals to seek treatments that do not involve long-term reliance on pharmaceuticals. Some individuals may also prefer noninvasive treatments because they address not only the physical symptoms but also the emotional, psychological, and social aspects of their well-being. 

Cost and accessibility are also two important considerations, especially when keeping in mind that approaches to healthcare, as well as medical and pharmaceutical regulations, can vary per country. Every country has its own regulatory agencies responsible for assessing and approving medications for use within their borders. These agencies evaluate factors such as safety, efficacy, quality, and the balance of benefits versus risks. Due to differences in healthcare systems, medical practices, cultural norms, and regulatory processes, medications that are approved in one country may not be approved in another. Additionally, variations in disease prevalence, treatment guidelines, and healthcare priorities can contribute to differences in medication availability and approval across countries.

Personally, I do not believe in inaction while invaluable but timely research takes place, and we work towards a cure; both take significant time and funding. People should not have to suffer in the interim. If there are treatment options that are substantiated by scientific evidence and resources that can help, we want to share these with people, so that people are informed that they have options and can then choose for themselves. While research continues with the goal of finding a cure, we want to create access to effective, diverse, and safe treatment options to accommodate patients’ range of symptoms, comfortability, and needs along the way.

Q: What percentage of donations goes to research? How do you decide who to fund?

Throughout our website (FAQ page & more), in a previous Q&A video (2022 VSI Founder Q&A: Research, Donations, and Funding), on our Donation page, it is explicitly stated that 100% of donations to the Visual Snow Initiative go directly to VSS research. For amounts that are given to researchers, which are designated by them and required to complete the studies, they are specified in every article in our News & Research section that announce when a research project has been funded. Per every study funded, we also share an image of each research team holding a check from the Visual Snow Initiative, which displays the amount, who the donation is going to, and the purpose, being Visual Snow Syndrome research. As for funds raised, you can see who has donated to VSI and how much on our donation page. We are grateful to everyone who supports VSS research. As for how we decide who to fund, this was answered in a previous Q&A video. The answer to the first inquiry still applies, while portions of the latter questions have since been updated via our website.

Q: How are Dr. Puledda and Dr. Wong studying biomarkers at the same time?

Dr. Francesca Puledda, VSS principal investigator at King’s College London, and Dr. Sui Wong, VSS principal investigator at Guy’s and St Thomas’ NHS Foundation Trust, are both studying possible biomarkers and the pathophysiology of Visual Snow Syndrome (VSS). Dr. Puledda is interested in using the insights gained through her research to develop potential pharmacological treatments. Dr. Wong is actively utilizing Mindfulness-Based Cognitive Therapy and brain scans to treat VSS (MBCT-vision), as well as taking blood samples to reveal possible biomarkers and anomalies in the VSS patient population. Their VSS research, which is currently active and ongoing, has been funded by the Visual Snow Initiative.

We fund VSS studies worldwide, often simultaneously, to maximize research efforts and learn as much about the condition as we can as quickly as possible. Through the Visual Snow Initiative, VSS researchers collaborate on an ongoing basis. Each research team has their own areas of interests related to VSS, which commonly include symptomatology, pathophysiology, biomarkers, neurotransmitters, clinical/diagnostic tools, brain imaging, neuromodulation, pharmacological treatments, and noninvasive treatments. Some research teams are interested in the same topics but have different approaches or preferred methods. Such is the case with Dr. Puledda and Dr. Wong, who are both part of our Global Research Team.

Any new knowledge gained about VSS can be valuable to researchers, whether it is achieved through their own studies, or the information is provided by a colleague’s findings. VSS research through the Visual Snow Initiative involves teamwork and is very much a collaborative effort. There are multiple research studies going on at once, and we all work collectively as a team.

Q: How does MBCT for VSS work and do you think it will ever be available in my country?

Currently, Neurologist and Neuro-ophthalmologist, Dr. Sui Wong, is investigating MBCT (Mindfulness-Based Cognitive Therapy) as a treatment for VSS in collaboration with VSI and Guy’s and St Thomas’ NHS Foundation. Thus far, objective functional MRI scans from her feasibility study indicated that MBCT (Mindfulness-Based Cognitive Therapy) can improve VSS symptoms and is correlated with change in the brain’s visual network. It essentially acts as a form of brain training to modulate dysfunctional brain pathways.

VSS is associated with functional connectivity dysregulation of visual networks, meaning that there is a disruption in the brain networks that involve the visual pathway. The neurological network dysfunction of VSS also affects attentional and salience networks. The salience and default mode networks are closely associated, where the default mode network reflects the baseline state of connectivity. MBCT intervention has been shown to modulate these networks.

Dr. Wong has customized MBCT for VSS symptoms, coining the term, “MBCT-vision.” For more information, please access her study in the Journal of Neuro-Ophthalmology. The study’s outcome revealed not only symptom reduction but also measurable changes in brain activity. Objective fMRI brain scans and data evidenced that MBCT-vision can modify dysfunctional visual networks in the brain, with the potential to improve both visual and non-visual symptoms. The benefits of MBCT for non-visual symptoms are well-documented, such as with the reduction of tinnitus, anxiety, depression, derealization, depersonalization, and more. However, MBCT for VSS can also help reduce visual snow/static, afterimages, photophobia, trailing phenomenon, and visual aura, by modulating functional connectivity dysregulation of visual networks.

Dr. Wong’s findings also suggest a material change in the underlying condition. This includes both visual and extravisual default mode networks within the brain. Patients also reported improvements in both the severity and impact of their VSS symptoms. Moreover, findings supported that the alteration of visual network functional connectivity within visual areas and association networks may underpin disruptions between the integration of internally generated visual information and the processing of salient environmental stimuli, which results in a constant “noise-like” perception.

Expanding upon her previous study, Dr. Wong and VSI are working on another study together: a Randomized Control Trial (RCT) that will test how MBCT/MBCT-vision can improve the brain’s visual network to filter out the unwanted images to improve or resolve symptoms of VSS. As mentioned, she will also be taking blood samples from study participants that could potentially reveal anomalies in the VSS patient population. 

MBCT is currently utilized to treat the symptoms of a variety of medical conditions related to the nervous system and neurodegenerative disorders. Research has demonstrated that intense mindfulness training can alter brain pathways. However, Dr. Wong’s MBCT-vision protocol marks the first time MBCT has ever been modified to specifically address VSS, as well as the first time MBCT has been studied in the VSS patient population. As we learn more about VSS and MBCT-vision through this latest RCT, it is possible that her methods can be replicated to implement MBCT-vision globally in the future. This possibility also increases once the study has concluded and the findings are published, so that the medical community can learn from, build upon, and/or implement Dr. Wong’s methods globally.

As we work towards a cure, we also strive to make the world a more accessible, educated, inclusive, and supportive place for people of all ages affected by VSS. As such, we hope to help make MBCT for VSS globally-accessible in the future; so that those with the condition who are interested in trying it to improve their symptoms, can have the opportunity.

For more information about this research, please visit the MBCT-vision website or contact Dr. Wong and her research team at: [email protected].

Q: If VSS is not a psychiatric condition? If not, then how does MBCT help?

Visual Snow Syndrome (VSS) is not the result of a psychiatric or psychological illness. That is an illogical, primitive, and scientifically disproved notion that is offensive to many people affected by VSS, me included. As someone who subscribes to logic and science, I understand how the words, “mindfulness” and “therapy” (in Mindfulness-Based Cognitive Therapy), can initially color one’s perception and be perceived as non-scientific, emotion-based verbiage by those unfamiliar with the latest body of research. However, virtually anything that can impact the brain, specifically induce neuroplasticity, alter neurotransmitters, and cause structural or functional changes, has the potential to affect VSS, a brain disorder; this is the case with Mindfulness-Based Cognitive Therapy, or MBCT.

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. As mentioned above, MBCT essentially serves as a form of brain training to modify dysfunctional brain pathways. Research has shown that MBCT can induce structural and functional changes in the brain, a process known as neuroplasticity. For example, studies using neuroimaging techniques have demonstrated changes in several brain regions post-MBCT intervention. Such is also the case with the objective fMRI brain scans and data from Dr. Wong’s pilot MBCT-vision study, which affected both visual and extravisual default mode networks. Most studies have focused on brain regions associated with attention regulation, emotion processing, and self-awareness. Dr. Wong’s work entails MBCT targeted at treating VSS symptoms. Findings indicated that MBCT-vision can also modulate dysfunctional visual networks in the brain, with the potential to improve both visual and non-visual symptoms. By modulating functional connectivity dysregulation of visual networks, symptoms such as visual snow/static, photophobia, trailing phenomenon, and visual aura have the potential to improve. MBCT promotes the growth of new neural connections and regulates neurotransmitters like serotonin, a crucial brain chemical associated with the biological basis of VSS. Additionally, it can help reduce the activation of the body’s stress response system, leading to lower levels of stress hormones that have been implicated in neurodegenerative processes. Data has also shown that MBCT has the potential to improve cognitive function and slow down cognitive decline. Studies have demonstrated that MBCT intervention can enhance attention, working memory, and executive function, which are cognitive abilities often impaired in neurological disorders such as VSS. MBCT may also help regulate the functioning of the limbic system and have an effect on the activation of the body’s endogenous opioid system, allowing individuals to process sensations without becoming overwhelmed by them.

Prior to Dr. Wong’s MBCT-vision study, existing scientific evidence already suggested that MBCT can help the non-visual symptoms of VSS, such as anxiety, depression, derealization, insomnia, paresthesia, “brain zaps”, and brain fog. However, through Dr. Wong’s novel MBCT-vision study, brain scans and data also indicate that the intervention can alter the brain’s visual network to potentially treat both visual and non-visual symptoms as well.  There is a growing body of research on the potential benefits of MBCT for individuals with neurological disorders, including VSS.

For more information about VSS and MBCT, please visit the Managing VSS: MBCT page on the Visual Snow Initiative website, or please feel free to visit our FAQ page for further answers to related inquiries.

References:

Wong, Sui H. MD, FRCP; Pontillo, Giuseppe PhD; Kanber, Baris PhD; Prados, Ferran PhD; Wingrove, Janet PhD, CPsychol; Yiannakas, Marios PhD; Davagnanam, Indran FRCR; Gandini Wheeler-Kingshott, Claudia A. M. PhD; Toosy, Ahmed T. PhD, FRCP. Visual Snow Syndrome Improves With Modulation of Resting-State Functional MRI Connectivity After Mindfulness-Based Cognitive Therapy: An Open-Label Feasibility Study. Journal of Neuro-Ophthalmology 44(1):p 112-118, March 2024. | DOI: 10.1097/WNO.0000000000002013

Lomas, T., Ivtzan, I., & Fu, C. H. Y. (2015). A systematic review of the neurophysiology of mindfulness on EEG oscillations. Neuroscience & Biobehavioral Reviews, 57, 401–410

Pickut, B. A., Van Hecke, W., Kerckhofs, E., Mariën, P., Vanneste, S., Cras, P., & Parizel, P. M. (2013). Mindfulness based intervention in Parkinson’s disease leads to structural brain changes on MRI: A randomized controlled longitudinal trial. Clinical Neurology and Neurosurgery, 115(12), 2419–2425.

Lawrence, M., Booth, J., Mercer, S., & Crawford, E. (2013). A systematic review of the benefits of mindfulness-based interventions following transient ischemic attack and stroke. International Journal of Stroke, 8(6), 465–474.

Grossman, P., Kappos, L., Gensicke, H., D’Souza, M., Mohr, D. C., Penner, I. K., & Steiner, C. (2010). MS quality of life, depression, and fatigue improve after mindfulness training: A randomized trial. Neurology, 75(13), 1141–1149.

Segal, Z. V., Bieling, P., Young, T., MacQueen, G., Cooke, R., Martin, L., … & Levitan, R. D. (2010). Antidepressant monotherapy vs sequential pharmacotherapy and mindfulness-based cognitive therapy, or placebo, for relapse prophylaxis in recurrent depression. Archives of general psychiatry, 67(12), 1256-1264.

Wells, R. E., Burch, R., Paulsen, R. H., Wayne, P. M., Houle, T. T., Loder, E., & Schachter, S. C. (2014). Meditation for migraines: A pilot randomized controlled trial. Headache: The Journal of Head and Face Pain, 54(9), 1484–1495.

Cherkin, D. C., Sherman, K. J., Balderson, B. H., Cook, A. J., Anderson, M. L., Hawkes, R. J., … & Turner, J. A. (2016). Effect of mindfulness-based stress reduction vs cognitive behavioral therapy or usual care on back pain and functional limitations in adults with chronic low back pain: A randomized clinical trial. JAMA, 315(12), 1240-1249.

Hofmann, S. G., Sawyer, A. T., Witt, A. A., & Oh, D. (2010). The effect of mindfulness-based therapy on anxiety and depression: A meta-analytic review. Journal of Consulting and Clinical Psychology, 78(2), 169–183.

Simpson, R., Mair, F. S., & Mercer, S. W. (2018). Mindfulness-based stress reduction for people with multiple sclerosis–a feasibility randomized controlled trial. BMC Neurology, 18(1), 1–9.

Q: Do you think a cure is possible? How long will it take?

Yes, I do think it is possible there can be a cure for Visual Snow Syndrome (VSS). I also do not believe in being blindly positive. If anything, because of everything I have been through, I tend to be more skeptical and careful. I am also not fond of making efforts void of logic, feasibility, or purpose, so rest assured, if I did not think it was possible, I would not be operating the Visual Snow Initiative (VSI), nor would the VSI team, global researchers, scientists, and medical professionals be so invested in our collective cause. Research is crucial to identify pivotal information about VSS. This information can then be used to develop safe treatments with high efficacy or a cure, which is the ultimate goal.

Before I started VSI, when I approached the handful of VSS researchers at that time, they unanimously expressed that awareness, education, legitimacy, funding, and research for VSS were all scarce to nonexistent. They recognized that rectifying any of these issues would be challenging and said that there may never be solutions for VSS in our lifetime unless action is taken soon. Since the establishment of VSI, we have funded critical research in 7 different countries that led to the clinical, scientific acceptance of VSS as a distinct, neurological condition (with both visual and non-visual symptoms), discoveries regarding the pathophysiology and biological basis of VSS, as well as the development of treatments for VSS symptoms where none existed. VSI also developed the first Diagnostic Criteria for VSS, created the first Global Directory of VSS Physicians, produced hundreds of educational videos about VSS for healthcare professionals and patients, established newfound awareness for VSS through multimedia content, and created physician-patient resources to improve health literacy, communication, and education regarding VSS. We have also brought experts together in all fields related to VSS, such as neurology, neuro-ophthalmology, ophthalmology, optometry, and more, to collaborate as part of VSI’s Global Research Team. As one of our earliest efforts, we also organized the first Visual Snow Conference as UCSF, a free summit that brought together patients, their families, and VSS experts from around the world.

The same medical professionals and scientific institutions that once adamantly stated that VSS was not real, and wrongfully wrote it off as a product of psychiatric illness or simply migraine aura, are now accepting the condition. The largest healthcare bodies in the world, such as the World Health Organization, are reviewing our proposal to have VSS included in the International Classification of Diseases, which would finally ensure VSS’ global legitimacy and eligibility for financial support. 

I understand how it feels to be negatively impacted by a medical condition and that in such situations, relief cannot come soon enough. The rate at which solutions, such as a cure, can be produced depends on several factors, including the rigorous, bureaucratic, and sometimes glacial process related to medical research, technology, and funding. Passionate about finding solutions and helping others with VSS, this was an unfortunate reality I had to learn along the way. A cure cannot come soon enough for us all. It will take time, effort, and funding, but realistically-speaking, we can certainly get here. However, an exact timeframe for which that occurs is difficult to say because it depends on the rate of research and funding for said research.

Years ago, I was told none of the aforementioned progress would be possible. Specifically, that all of this would take 30-50 years, and that was if I was “lucky”. Although the chances were slim, I knew there was still a possibility. Unless some form of action was taken, no progress was inevitable. I’m so thankful and proud of the VSI team, VSS researchers, and all our amazing supporters who have helped our cause. We still have a way to go, but we have also come so far. Just as we have defied expectations and made significant progress in numerous areas of VSS (even when the odds were stacked against us), today, I can confidently say a cure in the future is a possibility, but only if we all continue our impactful collective efforts to generate awareness, education, resources, and funding for VSS research.

This previous Q&A video may help offer further insight regarding a cure and treatments for VSS: 2022 VSI Founder Q&A: Why is the VSI working on a treatment and not a cure?