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What Is Visual Snow Syndrome?
Paul Domb • 2023-11-07
Dylan Carnahan:Welcome to the Simple Questions Podcast. This is your host, Dylan Carnahan. The question for this episode is, what is visual snow syndrome? You will learn in this episode, common symptoms associated with visual snow syndrome, or VSS, treatment options for VSS, and lifestyle modifications that can help alleviate VSS symptoms. Our guest is a visual snow advocate. The father of Sierra Domb, who is the founder of the Visual Snow Initiative, and a member of the Board of Directors for the Visual Snow Initiative. I introduce to you Paul Domb. I was notified by a member of my family that they have the inability to conjure images in their mind's eye, which is known as aphantasia. This was something that led us to do a podcast episode with Tommy Baird, the co-founder of the Aphantasia Network. And ultimately, after doing some further research, I stumbled upon Visual Snow Syndrome, which led me to the Visual Snow Initiative, your foundation. And after reaching out to some of my family members, specifically those that had aphantasia, it came to my attention that this is something that also impacts them. And that's how I discovered all about this topic. So Paul, can you elaborate on how you discovered about Visual Snow and how you became a part of the Visual Snow Initiative?
Paul Domb:Sure. I became a part of the Visual Snow Initiative because of my daughter, Sierra Domb, founded the Visual Snow Initiative. She was impacted suddenly, like most people, driving home from university in this instance. And everything went black in an instant. She luckily was able to pull over and she called me up. And when she could see again and things weren't black, her world, as she saw it, was filled with static throughout her field of vision. And this was occurring 24-7. We were obviously alarmed and went to local medical institutions, local doctors. Nobody had any idea what was going on whatsoever. So this went on for a couple of weeks. We continued to make calls. And subsequent to that, we went to some very well-known medical universities outside of Florida, and they had no idea what was going on. In addition to the hallmark symptom of visual snow, visual snow, which is seeing static 24-7, and I might mention, it falls into a range. So for some people, they can see through it. For some people, it's more of a snowstorm, but it is extremely alarming when you don't have any type of diagnosis or acknowledgement that what you're experiencing is real. And this went on for Sierra for 18 months. So the senses were heightened. The magnitude of worry was heightened. The anxiety was heightened. With every passing day that we left a doctor's office, a university where we had no answers whatsoever, no diagnosis, some of them thought it was psychological. So it was extremely frustrating, but more so for Sierra because she was experiencing the symptoms herself. We subsequently, Sierra found a doctor, his name was Dr. Peter Goldsby. And he had published a paper about a syndrome called visual snow. And she got chills in describing what he had written about because it described her symptoms to a T. He's in King's College in London. He's also at UCLA. And she called them up. We met with Peter. He made the official diagnosis. She asked the question, how come you seem to be the only one in the world who knows about this? Sierra thought at the time she could go blind. She thought maybe she could die because she was also having non-visual symptoms. And nobody had any explanation for this. So it's just the deterioration, isolation, marginalization on behalf of the medical community. And Peter said, this is not going to impact your vision any more than it already has. You won't go blind. So there was reassurance that somebody knew, somebody in this world knew what was going on. And he certainly did. But she posed the question to him, how come nobody knows about this but you? And basically what he said was funding. He said, there's a lot of non-believers out there, meaning the medical community, which she had already experienced for 18 months. So she was forced to leave university. She couldn't drive, she couldn't go to concerts, she couldn't watch TV, she couldn't be on her computer. So you're also talking about a quality of life issue for many people throughout the world who go unacknowledged and isolated. And this forced her to become an activist and philanthropist.
Dylan Carnahan:Wow, I mean, there's a lot to digest there. Firstly, that must be very, very traumatic. You know, not only for Sierra, but for you to have your daughter impacted by something. And to not get that validation that there is something wrong, that's damaging. I mean, and especially, as you said, that she's unaware of, is this going to increase to the point that I go blind, you know, not knowing what the progression is on that. I mean, that's even more scary. And wow, that's...
Paul Domb:Yeah, you actually just assume it's a regression when you don't have a diagnosis. So you can only assume the worst because you're experiencing something that is foreign to every doctor. We went to probably two dozen doctors over that period of time. And we were also at the ER many times because these symptoms can just be overwhelming for so many people. So when Peter said we don't have funding, Sierra decided that she was going to alter the future of visual snow by doing a conference first and inviting the experts that actually many Peter suggested because he knew colleagues around the world in Australia at Monash. And we held it at UCSF in San Francisco. And they did fly in from all over the world. Experts, neuro-ophthalmologists, neuroscientists, we even had a rocket scientist, a literal rocket scientist, he used to do eye studies on test pilots. And really bright guy, out-of-the-box thinker. So we had a wide variety, and this was six years ago. And it was very well attended, and it was the first time that people with visual snow, their parents, their friends who attended, were validated. And there was a cathartic, it was almost tangible in the conference itself, where you saw people just getting better for being acknowledged. And quite frankly, the physicians didn't realize the impact that non-action had on the visual snow community, because many of their questions had to do with the fact that being acknowledged was so important. And to your point that you said earlier, it is very difficult. And if you know what you don't have, that can be half the battle. In other words, if you don't have a life-threatening illness or disease, that's significant, because you start to deteriorate as a person when you go unacknowledged, and you're having all types of symptoms. So it's very important. Sierra also flew to Los Angeles and garnered attention through celebrities, through influencers. She also sponsored the Daytime Emmy Awards. So she was garnering attention, and we put some of this up on screens at the conference where, for example, Ringo Starr was acknowledging visual snow syndrome as something that needs funding, and people were just beside themselves. Because again, it's the first time they've ever been acknowledged and to be acknowledged by somebody who is recognizable was very cathartic.
Dylan Carnahan:Wow, what a 180, right? From going, hey, we got two dozen providers that are unaware and you're having to go to someone in Keynes College, to hey, we're able to get some people with mainstream credibility and the pop culture essence to kind of back this idea. What a progression there.
Paul Domb:It was the journey of a thousand miles, if you would. It was the first step in a journey of a thousand miles for Sierra because shortly thereafter, she created the Visual Snow Initiative to fund research, create awareness, created all the platforms, all the content. And when I say all the content, she has produced with her production company 600 videos, educational videos, PSAs by recognizable people that help not only the Visual Snow community, but the medical community around the world. So what we thought was an outlier in terms of a syndrome is actually affecting 2 to 3% of the population. So the Visual Snow Initiative started hearing from many developing countries where today they are where Sierra was six years ago. And they need help. To date, she's heard from 97 different countries around the world. So this was very unexpected. We thought this was more of an outlier, more of a rare condition. Many people refer to it as a rare condition. It is not. It is anything but. And again, it's easy to do the math on 2 to 3% of the population. That said, 2 to 3% of the population does not necessarily have their life turned upside down. But about half of them are in a situation that Sierra herself was in, where day to day functions and day to day activities are either stopped or significantly reduced.
Dylan Carnahan:Paul, we've alluded to and talked about one of the predominant symptoms of visual snow syndrome, which is kind of the static snow aspect, the visual aspect. What are some other common symptoms associated with visual snow syndrome?
Paul Domb:Tinnitus is the non-visual, but palinopsia is a visual symptom. As a matter of fact, Sierra created the first diagnostic criteria along with the doctors that are listed on our website. And this is something that she created so doctors would be able to recognize that end patients could print it out and take it to their doctor and say, this is what's happening to me. But night vision, nyctalopia, trailing images are all the hallmark visual symptoms and non-visual symptoms. There's a wide variety from tinnitus, which I mentioned, migraine and neuropathy, pain in the extremities. And then along with it comes something that's pretty insidious, which is anxiety and depression. So we're often asked the question, that's a chicken and an egg question. But to my way of thinking, if somebody told you you had a syndrome that impacted your quality of life so negatively, you then develop anxiety and depression, particularly when nobody's giving you a diagnosis and nobody's giving you any answers. So in my mind, this is a result of visual snow. But we hear from a lot of people who, unfortunately, are at their wits end, and many who become suicidal because they go unacknowledged and they are isolated. And as I mentioned, many in developing countries don't have access now to the resources that are made available here. And through the Visual Snow Initiative, and we intend on changing that.
Dylan Carnahan:I mean, that's, you know, that's a little deceiving, you know, Visual Snow Syndrome in the name. You think it's just isolated that specific symptom, right? But it's a cluster of symptoms.
Paul Domb:It is a cluster. It's a constellation of symptoms. And it's also it sounds just the name itself is it sounds benign. It sounds like I wouldn't mind having that because it doesn't sound like it's dangerous. And it doesn't sound like it's significant. So it's it's not a great name, but a syndrome is simply a constellation of symptoms versus a disease, which is identifiable.
Dylan Carnahan:Well, well said. I mean, it is it's kind of a visual snow doesn't really you know, it sounds good if you will. You know what I mean? It doesn't have anything inherently negative in that. But yeah, you know, the the experience of that is very real. It's very real.
Paul Domb:Now, absolutely.
Dylan Carnahan:You mentioned kind of Sierra's story, but are there any known causes or risk factors for developing visual snow syndrome?
Paul Domb:The short answer is no, there's not. The research is ongoing and we are funding research currently in Switzerland with Dr. Christoph Schenken, he is at the University of Bern, he is doing what's called neural modulation, so it's low-level electric current stimulation. The theory behind it is that through brain imaging, they realize that within the VSS population, there is a hyperactivity in the lingual gyrus area of the brain. And that hyperactivity, they think, is responsible for the visual aspect of visual snow. So by using low-level electric current, they want to alter the hyperactivity or change it, if you will, to find out the results. If they could slow it down, does the vision become clear, does the static go away, is there symptom reduction? We're also funding research at King's College, again, through Dr. Francesca Puleta. And she just found two biomarkers, glutamate and serotonin, that were at different levels in the VSS population versus the non-VSS population. So it was the first biomarker and a significant step forward. And she's also going to be using the most powerful MRI to do brain imaging. It's called a Tesla 7F MRI. And she's also going to be doing transmagnetic stimulation. Transmagnetic stimulation is the same theory of, instead of using electrical current, you use magnetic current to alter the hyperactivity. One of the studies that we're most excited about is, I mean, we're excited about all of them, quite frankly. These are people who are so dedicated and have been involved in visual snow research for a while. But there is another one that has taken an alternative route, which is Dr. Sui Wang, and Dr. Sui Wang said, I'm going to try something out of the box, and I am going to utilize MVCT, which is mindfulness-based cognitive therapy. Mindfulness-based cognitive therapy in the medical profession is widely accepted to reduce anxiety, depression, and she thought she would do a study. We partially funded this study. She gave a presentation at Nanos in Orlando this year. And the most compelling thing to me was, and to many others in attendance, there was about 500 neuro-ophthalmologists in the audience who were blown away by her presentation simply because she took measurements of the brain before and after. And when she showed the brain images to the audience, they were blown away by the brain activity, the increase in brain activity that occurred. So again, MBCT is mindfulness-based cognitive therapy, which is not going to have negative side effects that, for example, taking an adjustable pharmaceutical would. So all of this is pretty exciting to us going forward. We're also going to be obtaining what's referred to as an ICD-11. ICD is the International Classification of Diseases. It's put out by the World Health Organization, and Sierra came up with this idea. Because it's been unacknowledged for so long, it's now become more mainstream. It's also become topical, partly as a result of Sierra's efforts and the initiative's efforts and her team's efforts and others as well. But getting an ICD-11 is a validation for the medical community. They can actually look it up. It's got its own ICD number. They know that it's real, and insurance companies also have to pay attention to it. So for people who can't afford it, this will change the course of treatment for them because they will be able to afford it. And that's some of what we're working on. I'm not sure I answered your specific question. I just think I gave you a lengthy answer to a different question. So Dylan, if you want to run that by me.
Dylan Carnahan:Paul, that was a lot of great information. Yeah, I mean, you know, so I'm hearing that you're doing work to kind of better understand the root cause of visual snow syndrome. You've done some research and gained some insights with some biomarkers, as well as some hyperactivity in the brain. So there's some things that you guys have mapped out through some of your research. And as well as your work on kind of overcoming some of these, I don't know, organizational policy barriers that you have to getting this addressed by the medical community.
Paul Domb:The bureaucracy of it, yes. And to answer your question, so there is no genesis that's known. There are many, many theories. The initiative hears about possibilities. And there are common themes. You know, it could be medication, it could be SSRIs, it could be antibiotics. It's such a wide range, and we hear, it's in the hundreds of theories of what initiated the visual snow. But from a scientific perspective, there is nothing, and that's what they're really trying to do by finding biomarkers so they can get to the genesis of it. But I'm not convinced that if they do get to the genesis of it, because we're talking about the brain, essentially. So you're talking about billions of neurons, synapses. I don't know that getting to the genesis is, I mean, don't get me wrong, it would be fantastic, but people need help today. And if you can develop treatments today, yes, there should be research trying to establish how this occurs, so there's a possible answer there. But I don't necessarily agree that it's the answer. And because there's so many people suffering, I think treatment options similar to Dr. Sui Wang, who's doing the MBCT, is part and parcel with brain imaging and the other types of research that's going on around the world that we're funding.
Dylan Carnahan:Well said. I am curious. You said Genesis is unknown. It's still kind of doing research on that, as well as trying to figure out ways to help people that are currently impacted with VSS. In kind of the stories and experiences that have been shared with the Foundation, has this been a gradual appearance of visual snow syndrome, or is it more akin to, say, the experience your daughter had, where it's just a sudden onset?
Paul Domb:It's instantaneous for most people. It happens in the snap of a finger, which is shocking. In other words, it doesn't happen. I mean, for some people, it does happen over weeks where it gets worse and symptoms start to come on. But the initial impact is in a split second. And then the wheels come off the wagon, if you will, on your quality of life. And so many people go through this. There is many resources now, particularly in the United States and the UK, where people can read about it, educate themselves. They're talking about it on social media. All of the platforms are on the initiative, and the engagement is unbelievable, something that none of us thought would ever occur. And then it took on a life of its own. When you realized you're helping one person and can help another person, it became incumbent upon Sierra to do more, and she's done that. So we're now concerned, more concerned about developing countries because we hear from so many people who are 10 years ago, where doctors, if they're lucky enough to see one, have no idea what this is or how to make a diagnosis. And even more significantly, tell them what they don't have. Tell them that they're not going to die. Tell them that they're not going to go blind. And that's really significant. If you can identify a name and people understand what it is and what it isn't, that can very much be the path that leads them on the road to getting better.
Dylan Carnahan:Yeah, well said. And I think, again, with that kind of, in some cases, instantaneous occurrence, I mean, oh, my lord. I mean, that's a lot to handle and to not have that information readily available in a developing country and to have a provider that knows about that. That's, yeah, I mean, as you put it, you're talking about people's lives being impacted. I know...
Paul Domb:It's like having the rug pulled out from under you, and then you have no idea why that happened. And having an idea of why that happened can be cathartic.
Dylan Carnahan:Absolutely. You had mentioned earlier, I know you spoke a little bit about NBCT. What other available treatment options are there for managing visual snow syndrome at the moment?
Paul Domb:I mean, some are simple. We had a gentleman on our panel who is not in the medical profession back at UCSF six years ago. His name is Matthew Renzi. And he's done several videos for us. And he is a great public speaker. His videos are on Visual Snow Initiative site. And he talks about how he rebuilt his life through exercise, through meditation. And again, it's not for everybody. Some people just need to put on FL41 glasses, which are tinted lenses, to help them reduce the glare, reduce the snow. And there's not a one-size-fits-all solution. As far as the MBCT, this is something, because it's still at the research stage, and we'll be announcing this probably next month, our funding of this study, it'll start probably in the first quarter of 2024. This is more of a stay tuned, just like most research. But the treatment itself, we are working with two other doctors, Dr. Charles Shulovsky and Dr. Terry Tsang, who have combined forces. We actually put them together, and they developed a treatment option that has been very successful. And it's basically eye therapy, for lack of a better term. They go through a series of tests, which is rehabilitation for the eyes, expanding peripheral vision. There is a video on our site, Visual Snow Initiative Summit, where people can watch and listen to both Terry and Charles and find out more about it, or they can call their office directly and find out more about it. But this has been, it's not for everybody. It's been successful in more than half the people who have done it in symptom reduction. So it's important, I think, to pursue both the research side and the treatment side at the same time.
Dylan Carnahan:Yeah, well said. Well said, especially, again, you're talking about people that are currently impacted by this on a daily basis. And with that being said, I know we talk about some of the treatment options, but are there any lifestyle modifications or practices that can help alleviate VSS symptoms? I know you mentioned tinted glasses recently.
Paul Domb:Yeah, that's a good question. Yeah, the tinted glasses are important for many people who have blue endoptic. They look at a blue sky, but they see squiggly lines or it's very hard for them because they don't see the same thing. They can't watch a sunset. Tinted lenses have been proven to be helpful. It's a symptom reduction. It allows them to be on the smartphone, computer, a little bit longer. But again, there's not a one size fits all solution to this. So somebody might find the glasses meaningful, while somebody else might find, you know, I got to lay off the caffeine. So there's a multitude of suggestions and videos on our site, but there is not a one size fits all. If there was, then that would be our messaging. Unfortunately, everybody's different. Their symptomology is different. Visual Snow, when I say that, there's a constellation of symptoms, and not everybody has the same symptoms. And not only that, the hallmark symptom of static, not everybody sees the same thing. It falls within a range. And not only is that range from low level to high level, but it's also how it impacts that individual. So even if it was the same, it could impact somebody who has to work on a computer screen all day far more than somebody who doesn't. So there's so many variables, and that's part of the problem in nailing down inadequate treatment, because what you don't want to do is promote a treatment that is not going to help the majority of people. So there are suggestions. Some people find exercise, for example, meditation, for example, helpful, and other people find it to be intrusive. So unfortunately, I don't have a solution to offer other than to say, do your due diligence, go on the site, see what works for you. It'll probably be trial and error, but there will be something that will help.
Dylan Carnahan:Yeah, I mean, it's a difficult task, right? You talk about the involvement of all these different variables and how that can come into play to each individual's unique experience and what might help them. It's not a one size fits all approach.
Paul Domb:It is an issue, but it can be worked through, but it also can be frustrating because if somebody tells you, okay, cut out caffeine, exercise, and you have the opposite effect of instead of symptom reduction and increase in symptoms, it's not going to help the other symptoms. It's going to create more anxiety, more worry. Why isn't this working for me? So it is a bit of trial and error. And again, the best thing to do is go on site, look for these videos, because Matthew is a good example who spoke at our conference of a success story. And perhaps if you implemented one or two of these suggestions, not all of them, and you see what works for you as an individual, it can prove to be helpful in turning your life around.
Dylan Carnahan:Paul, there could be someone out here who is listening to this, because much like I did, they stumbled upon a rabbit hole, if you will, and they found the world of visual snow syndrome. What should someone do if they suspect they have visual snow syndrome?
Paul Domb:One of the other things that Sierra did was she created the first worldwide directory. So my suggestion would be to utilize that directory to find a qualified physician, generally a neuro-ophthalmologist, and have them make an official diagnosis, because there will be more questions than answers. But you need to see somebody who's qualified, because, and again, I would utilize the directory. It's very possible you'll go to a neuro-ophthalmologist, and they'll know what it is, but today it's just as likely that you'll go to a neuro-ophthalmologist, and they won't. So while that trend is absolutely turning from where we were six years ago, and certainly I would print out the diagnosis from the site and take that with the doctor on the chance that they don't know what Visual Snow Syndrome is so it can be explained. This is what I'm experiencing.
Dylan Carnahan:There's a great guidance on what to do, and I certainly applaud the work that the Visual Snow Initiative has done to consolidate all of this good information. Again, like a directory of providers that are aware of this issue, I mean, that's highly valuable. And especially being that to hear that, say, six plus years ago, that was something that simply did not exist.
Paul Domb:It didn't exist, Sierra. It took us 18 months, and we still didn't have an answer. And as I mentioned, it was an obscure article from a medical journal that Dr. Peter Goadsby had written about that resonated with Sierra and said, this is exactly what I have, and it's called Visual Snow. So now you can log on to a website, put in your state or your country, and hopefully this qualified physician is close by and you can make an appointment and get an official diagnosis.
Dylan Carnahan:I may have to jump in on this, but Paul, how can people learn more about the Visual Snow Initiative?
Paul Domb:Visit our website. It's www.visualsnowinitiative.org, and there is a library of 600 videos. There is all platforms where you can talk to people. So we have interaction and content that probably most people wouldn't want to spend that much time on, but a lot of the information is extremely valuable, particularly if you are impacted. So you don't have to be the person. You could be a friend of the person or the parents or relatives, or you could just be interested. There is a lot of research articles, and it's broken down, so it's very user-friendly. So you can get to where you want to get very quickly.
Dylan Carnahan:That's fantastic news, and I'll make sure to all of our listeners that that information will be included for the show notes for this episode. Paul.
Paul Domb:Thanks, Dillon.
Dylan Carnahan:Yeah, absolutely. Paul, this has been awesome. I appreciate you being such a great advocate and sharing your story and all the work that's gone into the Visual Snow Initiative that's helped so many people and is a fantastic resource. So I just want to thank you for sharing your knowledge and time today.
Paul Domb:I thank you, Dillon. I appreciate the opportunity and all the best.
Dylan Carnahan:That wraps up our conversation with Paul. We talked about the Visual Snow Initiative, known risk factors for VSS, and how prevalent VSS is. Go to this episode's show notes to see any resources Paul mentioned during our episode. And lastly, subscribe to the Simple Questions Podcast to get notified when our latest episodes are released. Thank you for listening, and remember to keep asking questions.