S3:Ep35 – Visual Snow Syndrome
Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease.
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We know migraine is often associated with visual symptoms, but how do those symptoms differ from visual snow syndrome? Find out as Dr. Charles Shidlofsky describes visual snow symptoms, the syndrome’s overlap with migraine, possible treatments for both conditions, and more.
Dr. Charles Shidlofsky: Good afternoon. I’m Dr. Charles Shidlofsky. I’m a neuro-optometrist in Plano, Texas. My practice is Neuro-Vision Associates of North Texas.
Today, we’re going to talk about visual snow syndrome. I think, really, the important thing to understand about visual snow syndrome is oftentimes it can mimic migraine symptoms, but also that migraine is something inherent in many of our patients with visual snow. So what I really hope to do today is kind of differentiate what visual snow is as a differential diagnosis — is compared to migraine headaches.
So I hope you can get a lot out of this, and for those of you familiar with visual snow, certainly I hope it answers some questions about it. For those who don’t know much about it, I hope you learned something today, and so let’s get started.
Really, I wanted to start off with — what I always like to talk about is the three O’s of optometry — optometry, ophthalmology, and opticianry — because there’s a lot of confusion out there. So we’ll talk a little bit about that at the beginning, and then we’ll talk about what is visual snow syndrome, who gets it, what’s the relationship to migraines.
And then we’ll talk a little bit about a study we’ve been doing in our office over the last eight months, nine months, and I want to talk to you a little bit about the testing that’s part of it, how we’re doing neuro-vision rehabilitation to help remediate some of the symptoms of visual snow syndrome, and we’ll talk about some other rehabilitation elements. And, lastly, I want you to think about, Can some of these treatments be applied to migraines only? So this is just some food for thought for you.
So let’s jump right into it. First, we’ll talk about the three O’s of eye care. As I said, I’m an optometrist, but, more specifically, my specialty is within what we call neuro-optometry, the concentration within optometry, but I’m kind of the therapist of the eye care world. I’m concerned with the function of the eye-brain connection. Part of that is I go in and see many patients who’ve had traumatic and acquired brain injuries, concussions. I’m on staff at a few rehabilitation hospitals here in the Dallas area. So I really work largely within this field, not the traditional eye-care field.
Ophthalmology, of course, can provide medical and surgical interventions for eye care. And then there’s neuro-ophthalmology, which is a subspecialty within ophthalmology, and it’s concerned with the structure of the eye-brain connection. And we work very well together because sometimes there are things that we can do to help the patient — as I said, we’re the rehabilitation specialists in the area of eye care world — and they can work on the surgical and medical aspects of things.
And then opticians help fit glasses, contacts, and other vision-correcting devices. So those are just to clarify the three O’s because there always seems to be a lot of confusion as to the different areas and different subspecialties within those areas.
So let’s talk about what is visual snow. It’s a neurologic condition that affects the individual’s vision, hearing, and cognitive function. So it’s really a multimodal thing. Even though it’s called visual snow, there are hearing components, there are cognitive function components that are really important, and we’ll kind of talk a little bit about that.
Individuals with visual snow describes seeing snow or dots or pixelated fuzz or bubbles or static, kind of like a poorly tuned television, and I think that’s really something that’s very, very visually disturbing. I’ll talk a little bit about one of my very first patients I saw with visual snow a few years back who was a college baseball player. And this college baseball player basically had to end his career up until we kind of figured out some solutions for him to bring him back to that. And that’s really kind of how I got involved with visual snow.
The exact cause is unknown, but research demonstrates there’s a connection between hyperexcitability in different parts of the brain. So that’s, I think, a really important aspect of it, especially as it relates to things like migraines.
So let’s talk about the visual symptoms first, and I mentioned some already: snow-like dots or pixels over the entire field of vision. Sometimes, they’ll see floaters or flashes of light. Photophobia or visual discomfort. One of the more common ones I hear is palinopsia. That’s kind of like trailers. You see light, and that light trails. It really is a very disturbing type of visual effect that people go through. Entopic phenomena — that’s something that can be very disturbing for people as well. Starbursts, haloes, diplopia.
This is a little graphic that I pulled up, and, thankfully, Visual Snow Initiative shared this with me — a really, really nice graphic that shows a typical view and then a person with visual snow. So I think that’s something that’s really kind of cool to take a look at.
Some nonvisual symptoms that are pretty common are tinnitus, depersonalization — and depersonalization is feeling that you’re outside the observer of your thought and feelings. So you feel like you’re outside of your own body. There was a great book, really more about post-concussion syndrome, called The Ghost in My Brain, and I always think about that title because the way he described that title was — really, he was describing the depersonalization effect of a concussion, but many of our visual snow patients come in with kind of that same sensation of that depersonalization. And, once again, I think there’s some linkages there with concussion and neurologic injury to visual snow syndrome as well.
They have some symptoms of anxiety and depression. It may preexist or be part of the syndrome. So sometimes they don’t have any anxiety and depression when they get visual snow — it pushes them into it — but some of these people had longstanding anxiety and depression. Frequent migraines, brain fog, and confusion — and a lot of times when I think about brain fog and migraines, we’re thinking about inflammatory conditions. What’s the neuroinflammation — what is it telling us? And, certainly, confusion, obviously the effect on the frontal-lobe functions of the brain.
And then muscular pain and headaches. Oftentimes, they also get neuropathy, which is like pain or tingling sensations in their extremities. And when I talk to some of the patients with it, it almost feels like neuropathy, but I’m not even sure if it’s a true neuropathy or is it a phantom-type pain — really hard to kind of discern between the two.
Insomnia and other sleep-related issues — one of the questions I always ask every single one of my patients who are going through this is, “Tell me about your sleep patterns.” So that’s an important question to ask patients who are going through visual snow syndrome. And generalized pain throughout the body — so I think that’s something also that is important to discuss with the patient. How are they feeling? Do they have pain all the time, pain sometimes? What are the time periods where they’re feeling pain? So those are some things that you can talk to the patients about.
Who gets it? Within our research study, it’s become apparent there are several potential commonalities among patients with visual snow, and one of the first groups I’ll talk about is anxiety and depression. I just alluded to that. A large percentage of the patients that we see have anxiety and depression. Once again, it could be preexistent or it could be post-existent.
Concussion and neurologic injury — a good percentage of these patients have reported concussion symptoms. Sometimes these are more post-concussional, like they have a concussion and maybe two, three weeks after they get the concussion, they’re starting to show up with these visual snow symptoms. It’s not unusual also for patients with concussion to show up with visual issues days and weeks after they’ve had a concussion, just the general binocular-vision issues. So this is not really all that surprising to me.
Positive history or history of migraine headaches — that’s a big one. I would say about 40 to 50 percent of my visual snow patients report migraine headaches. Another interesting tidbit that I’ve seen, at least within our study group, is a high average intelligence. These are people who have actually heavily researched visual snow, have a great understanding of it. And sometimes I think they know more than I do about it — quite frequently, actually. But they seem to be very, very intelligent people. And as I said, I don’t know if I’ve seen that in any studies; it’s just my observation more than anything else.
Some people have noticed visual snow symptoms as long as they can remember, since birth even, with no apparent preexisting history reporting. So I actually had one patient with visual snow who’s eight or nine years old that the parents brought them in to me to be seen. But they ranged all the way into their seventies and eighties, of patients that I’ve seen with visual snow.
So let me tell you a little bit of a story of how I got involved with this, how it all began. I’ve heard these complaints over the years, so this is nothing new. And I’ve treated them with traditional neuro-vision rehabilitation techniques, and most of the patients always reported to me, well, they got better. They seem to do a little bit better.
But the big break came, as I said, three years ago — and I sort of alluded to this story before — and it’s the story of Michael. And Michael was a college baseball player who played for Oklahoma State University. He didn’t like the big school and ended up transferring to a Division 2 baseball program in South Carolina. And what happened with Michael was he was playing ball one day and he started noticing the visual snow symptoms. And it was very frustrating, and he called his mother and said, “Hey, I’m having these symptoms.”
So he backed out of playing baseball for the next couple of weeks. Mom came to South Carolina — I mean, they virtually lived in our neighborhood — and came out to South Carolina and took him to different doctors. Went to a neuro-ophthalmologist in Nashville, talked to people in Switzerland, talked to people virtually all over the world, and, finally, he got the diagnosis of visual snow syndrome. And they were trying some different medical treatments for him. It really wasn’t getting any better.
And so, interesting enough, Michael’s mom became depressed over the whole situation. So she went to her doctor, her general physician, to get some treatment for that. And the doctor said, “Hey, why don’t you go see Dr. Shidlofsky and see if he could figure out what to do.”
And he came in, I did an evaluation with him, and, basically, what happened was I said, “Well, it’s–” I was talking to him about baseball, and a couple weeks before that, he was sliding into third, banged his head, saw stars, had a headache for two days, and then it went away, and he kept playing until the visual snow symptoms happened about three weeks later.
So that all happened, and then what ended up happening is the conference he plays for wrote an article about him — because the next year after we did his therapy, he went back and he was leading his league in hitting and slugging percentage, and then COVID hit. But the conference actually wrote a story about him, and then ultimately what happened, it was picked up by the news media, and then, ultimately, an article was written about him in si.com, sportsillustrated.com. And then my phone went crazy.
Then Visual Snow Initiative reached out to me. They connected me with Dr. Terry Tsang out in California. We put together an IRB to study this and try to figure out, hey, what’s working, what’s not? And I even said at the time, I felt like, hey, did I catch lightning in a bottle? I don’t know. Why did he respond so, so well to treatment? And so we really decided to study it.
So the structure of the study is we were doing it all in-office. We itemized the test that we were going to run, and we designed a therapy program around that.
We decided to do our baseline study utilizing a quality-of-life questionnaire. As a clinician, my goal was to improve someone’s life. It wasn’t really looking at one specific measurement or another specific measurement as much as it was — so we found a quality-of-life survey that had already been studied, so we made that part of our study. And they did one at the beginning, in the middle, and at the end.
And we did a very detailed case history. We did a neuro-ophthalmic examination, including binocular vision testing, visual information processing testing, accommodation, stereopsis. We also did some neurosensory testing. We did balance testing with a modified CTSIB. We did neurocognitive evaluation, visual perception testing, electronic eye-tracking, which was testing pursuits and saccades and fixations and reaction times.
And then on selected patients, I would do some a little bit different tests, kind of looking at, OK, what can I learn from a few varied patients? So I was looking at event-related potentials and heart rate variability utilizing an EEG device. I was using some visual fields. I was using dry-eye analysis because I noticed a lot of these folks, their blink rate was decreased, which is something common we see in concussion patients as well. So some people with dry-eye complaints, we would do a dry-eye analysis.
So then we had to kind of come up with a therapy concept. How are we going to do therapy the same in both facilities? But, typically, the way we do it is we individualize the therapy process, but we really — obviously, when you’re creating a study, you can’t really do it. So what we did is we created areas, and within areas, we had four or five, eight different procedures that the therapists can choose to do, and we would start off at the base.
So, at the base, we would work on motor skills with stable peripheral awareness skills. Then we would bring in central vision and alignment skills. Later on, we’d do binocular vision skills and then visual perception skills. So we kind of followed this pattern with every patient.
Now, I think right now, the study’s just about over. All the data is being reviewed by an independent reviewer at this point, so I don’t have any feedback for you from that perspective. But, obviously, in doing the post-evaluations, I have heard a few things from our patients. But results are primarily reported, as well as the quality-of-life improvement. So the quality of life was a very important aspect of it.
We repeated clinical tests that we did at the beginning. We did those at the end also. And, overall, I could say for most people have determined positive results. The data is compiled, and findings hopefully will be published by the end of 2021.
So one of the things I could tell you about this — I think, realistically — is some people had significant improvement, some people had moderate improvement, some people had lower improvement. But what we’re finding so far overall is people overall have noticed that their quality of life has improved. And I think that was kind of what our goal was. So we’ll know a little bit more about the ultimate findings shortly.
So, for future considerations, some of the things that I was thinking about as we move forward and continue to treat people is, What’s the role of neuroinflammation — specifically, the neurons and glial cells? I really want to understand that better. Unfortunately, sometimes the only way we can look at these things is through imaging, and imaging — it really doesn’t go to that level. But I think there may be some things we might be able to do in the future to kind of look that deep, because I think that’s really where the action’s happening.
I also have been thinking a lot about, What does the role of proper diet play in relieving symptoms of visual snow? And, really, even beyond proper diet is creating the proper sleep environment for people. What other concurrent therapies can we do — light and sound therapy, psychological counseling?
So our final thought is, Can some of these same techniques be applied to treatment of patients with migraines and associated headache syndromes? That’s a possibility. We’re learning a lot, and I think, there’ll be more to study in that area moving forward in the future.
So here’s my contact information. If you have any questions, feel free to reach out to me. I’m always glad to answer questions, and I really appreciate the migraine group for inviting me out to speak today and certainly hope to meet many of you in the future as we gain more progress and more insight into how visual snow can be treated. Thank you very much.
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