Light Sensitivity

Episode 94 - A New Treatment For Migraine And Light Sensitivity - Dr. Charles Posternack, Avulux

TTTP 94 | Migraine Treatment

Migraine is one of the most common and debilitating medical conditions in the world. Yet, despite its prevalence, it is poorly understood and often overlooked. One of the overlooked facts is that light sensitivity and migraine are actually closely related. Light sensitivity is one of the most common triggers and symptoms related to migraine attacks. In this episode, Dr. Charles Posternack, founder of Avulux, discusses the ground-breaking precision optical filter that has been providing relief to thousands of migraine sufferers around the world. Dr. Charles shares how it’s high time to address migraine more seriously and reach out to the world for the best cure it may have yet. Tune in now!

Learn more about Avulux at Avulux.com

Learn about the scientific studies about light sensitivity: https://avulux.ca/pages/understanding-the-science-behind-avulux-migraine-glasses

Want to offer Avulux? Contact defraim@avulux.com

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A New Treatment For Migraine And Light Sensitivity - Dr. Charles Posternack, Avulux

For this episode, I have a repeat guest. One of my favorite guests from a couple of years ago was Dr. Charles Posternack. He is a physician, a graduate of McGill University, and a fellow Canadian now living in Miami, Florida. Most importantly for this discussion, he is the Founder of Avulux. If you haven't heard of Avulux, it is a precision optical filter that is incredibly effective for patients who are suffering from light sensitivity and migraine.

I'm very excited. The first conversation that Dr. Posternack and I had a couple of years ago had a lot of traction. A lot of people were interested in the conversation. Avulux has come a long way since then. There are some cool and exciting announcements to make here. Make sure you stay tuned through the entire show. Thank you again, Dr. Posternack, for coming back on. I appreciate having you.

I appreciate that you're having me on as a repeat guest. I didn't blow it too badly the first time. All kidding aside, I’m excited, particularly in having the opportunity to spread the message and share the word about Avulux to something that I'm incredibly proud of, and from my perspective, is the legacy of my career. I’m a Canadian physician. I went through McGill Medical School and did my specialty training there. I'm neither a neurologist nor an ophthalmologist. As the father of two daughters who suffer from migraine, I got involved in this about ten years ago. What has transpired during those ten years is gratifying, particularly in how much and how many people are going to help.

I'm sure how many people it has already helped is pretty astounding, but the number of people that will continue to get benefit from this is amazing. You mentioned you're neither a neurologist nor an ophthalmologist, but I feel that it's almost more important that you have the family history that brought you into this. I have daughters of my own. I know how far I would go to help them to cure a condition that is chronic and that they're suffering from. That's almost more important than somebody who's simply researching it for the sake of becoming a successful researcher.

It's not even a job. It's a passion. It's something I committed to a decade ago. I was going to see it through to the end. In all honesty, when we began this project a decade ago, there was no guarantee. It has never been done before. There was nothing like what we were doing. It was the time in medical science when there was a strong push in the field of migraine. Whenever I say migraine, I choke up because it seems like everybody either has a friend, a family member, or a co-worker who suffers from migraine, or they themselves suffer from migraine.

To put into perspective, migraine is the third most prevalent disease in the world of all diseases. It doesn't get attention like heart disease or cancer. While migraine doesn't kill you, the disability it causes is enormous. That is why it is also noted to be the sixth most disabling disease in the world. It's a genetic disorder that if you're unlucky enough to get it, you do look for ways to manage your symptoms to get along with your daily life. That's the whole purpose of Avulux.

It was about ten years ago that the FDA did come out publicly and stated, “As medical researchers, we need to find better mechanisms and better ways to treat our patients who suffer from migraine." In the US, they're very expensive to the healthcare system. The reality is people suffer, and they struggle to get through their activities of daily living.

Through the conversations that I've been having with patients since you and I spoke a couple of years ago, and I've stayed in touch since then, I asked my patients much more thoroughly than I used to in the past. I'd say, “Do you have any medical conditions?” They'll say, “I get migraine.” I'll write it down and then move on to the next thing. Now I asked, “Tell me about that. How often? How severe? How does it affect your life?”

It's incredible how many people simply say, “I can't function. I close the doors and blinds, and lay down. I have kids. I have a job but I can't leave the house.” How much of an impact that has had on people's lives and people's productivity, and the economy even on a greater scale? I know there's a lot of data on that. I wonder if you'd be comfortable speaking about the impact it has on the economy. You've already mentioned the medical system. It has quite a burden as well.

What we know now about people who suffer from migraine is almost 1 in 4 of them are going to visit an emergency room in the course of the year. More than 50% of them are not going to be able to get through their workday. Almost 60% of them can get through what we commonly call activities of daily living, whether it is picking up their children after school, cooking a meal, going out on a Saturday night with friends, or attending a social event or a family event on a Sunday. When you're dealing with a disorder that would inhibit 6 out of 10 people, you do understand how severe it is.

When you're dealing with a disorder that would inhibit 6 out of 10 people, you do understand how severe it is.

I had a wonderful guest a little while back, Amy. She has an online community that she's built primarily on Instagram called The Migraine Life. She talks a lot about that. One of the biggest things is creating awareness about this condition. Up until I spoke to Amy, I would say, “It is just migraines. It's a headache.” She would say, “I stopped people from saying, ‘It’s just migraine.’ It's migraine. It’s a condition and a disease. I have a migraine attack.”

It is helping to change the perspective on it. That’s step one for many people because we often dismiss it as a headache. From your personal experience with your daughters and the patients that you've seen or dealt with through Avulux, it's much more than that. Before we go into the stats of the effectiveness or efficacy of Avulux, I would love to know the history of Avulux or some of the science that led to what it is now. We'll then talk about exactly what it is now and why it's such a precision filter.

Traditionally, in healthcare, when you're talking about treatment or attempting to manage symptoms of a disorder, conventionally and typically, we talk about pharmaceuticals. There's nothing to take away from pharmaceuticals. They've changed our lives for the better. Some of the research and incredible work that has been done in the pharmaceutical industry have been spectacular, but not everything can be treated with pharmaceuticals.

The reason being is people do develop adverse events or side effects or medication interactions. For some people like in the case of my daughter, after a few months, she would become tolerant of the treatment, and it wouldn't have the same effect. There are other medical devices, particularly in the space of migraine like neuromodulators, that work. When you look at treatments, you typically think of pills. This is why it's important to get the word out.

People sometimes look at me and say, "How can glasses treat a migraine attack? How could they manage a migraine attack?" It's something that almost surprised me and that gets back to history. Probably nothing is more intimately related than light and migraine. This is something we've known about for years, yet no one ever thought about using light and the manipulation of light as an actual way to manage the impact of the actual disorder of migraine itself.

What did we know? We know that between 80% and 90% of people who have migraine suffer from light sensitivity. We know that 30% to 60% of all migraine attacks are precipitated by exposure to light. We know that once you're in an attack, exposure to light makes it worse, and usually will intensify it, which is why people run to a dark room. What people don't know is 40% of all people who suffer from migraine experience light sensitivity as a sole symptom in between attacks.

When the FDA asked for the inclusion of the “most bothersome symptom” that a migraine sufferer has in addition to the conventional headache disorder, the number one symptom was light sensitivity. You have this incredibly intimate relationship. Now it required medical science to understand, “How does light impact migraine? How can that turn into some kind of management property?”

That all started with the science in early 2010 and all the way to 2020. We learned that at the back of a retina, there’s a smaller number of cell types. They are intrinsically photosensitive called retinal ganglion cells. One of these cell types is what's called a melanopsin-secreting cell. When these particular cells are stimulated, they'll release a photo pigment which is a protein called melanopsin. It is thought that photo pigment would then go through the optic nerve and act directly on the thalamus of the brain, which we know is the pain center of the brain.

As that research was established, they were looking for how exactly these cells get stimulated. There was a very elegant study done in 2016 at Harvard. They took migraine sufferers and put them in a dark room, then they expose them to different colors of light and different wavelengths. What they found was light in the high-end of the blue spectrum that’s about 480 nanometers, as well as light in the red amber range of about 590 nanometers would stimulate the cells to release melanopsin. They found as well that green light soothes them.

I’m putting this all together into one study. It was a series of studies performed at different times. What we essentially created was a map. If we could create a lens that would block out the light, at the high end of the blue range at 480 and block the amber-red at 590, but let the green light through, maybe this can have some kind of management effect. That was the challenge.

We had to sit there and figure out how to create a lens. Once we did create the lens, we then had to decide whether it can pass through the phase-two part of a scientific trial. In other words, if I gave this lens to 100 migraine subjects, will they get better? If they won't, it stops right there. If they do, then the next thing in today’s world of evidence-based medicine is, is it a placebo or a real effect? That was Avulux’s ten-year journey.

Our first iteration of the lens came out in about 2016. It was what we call the thin film that we applied to the surface of the lens. The problem with that is it was a very messy technique. It made the lens very dark. Because it worked by reflecting the bad wavelengths of light, you are required to have a wrap frame. You had these very dark lands with a wrap frame. It would be very expensive to produce the equipment to make these glasses. You could never scale them up. What it did is it gave us a bit of encouragement that in fact, "Maybe this is going to work."

With that lens, we continued. We did our provisional pilot. What we did was we essentially handed it out to patients who suffer from migraine. What we found was astonishing. We told individuals, “Put these glasses on at the earliest onset of a migraine, whether it's an aura in your case. Maybe it was a little bit of tingling in your head, but you knew that was going to bring on a migraine, and then see what happens.”

What we found was when 38% of people put these glasses on at the earliest onset of a headache, they never evolved. They never develop their typical migraine. It was very funny communicating with them. They said, “I thought I was getting a migraine attack. I put the glasses on, but they didn't come. I guess it wasn't even getting one.” We knew what was going on.

We found another 36% of people where it took longer to help relieve some of their light sensitivity and migraine symptoms, but they found that they could either eliminate or reduce the dose of medication that they were taking up until then. From my perspective, the most important was the next extra 18%. These were people who didn't get completely better, but that's okay. These were generally the more severe cases of migraine called chronic migraine sufferers. They were able to continue with their activities of daily living. At the end of the day, that is the most important thing

It’s not like Avulux has to be used alone. It can be used with medicines or with other migraine treatments. The important thing about Avulux is it tries to help a person get through their activities of daily living. We eventually got a little more sophisticated in our lens development. Around 2018, we partnered with a military contract company to develop a new lens using nanotechnology.

The important thing about Avulux is it tries to help a person get through their activities of daily living.

Essentially, that is the Avulux lens now. There are photoactive dyes incorporated into the matrix of the lens. What they do is absorb the light at 480 and a 590 in a very narrow notch. It allows the green light through. Essentially, it follows the science as closely as we could possibly make it. The nice thing is when you do have a precision filter like that or what we call a narrow notch filter when you're looking through the glass, it's not too dark. It doesn't distort your color.

People have to be able to tolerate wearing your lens. Avulux’s lens looks like it has the lightest lens when you look through the lens. After a few minutes, you don't even know that you're wearing it because it doesn't distort light. That was the lens that we took. We progressed upon to do what we call an evidence-based medicine clinical trial. We hired a third-party clinical research organization to do a double-blind randomized clinical trial comparing Avulux with a placebo. To cut to the chase, we reached the highest scientific standard. We were able to prove that Avulux both clinically and statistically significantly was better than a sham lens in both the alleviation of migraine pain and light sensitivity at 2 and 4 hours post-application of Avulux. That's when we knew this work.

TTTP 94 | Migraine Treatment

Migraine Treatment: Avulux, both clinically and statistically, was significantly better than a sham lens in both the alleviation of migraine pain and light sensitivity at 2- and 4-hours post-application of Avulux.

Thank you for outlining that. It's quite a journey. This show is a lot about the entrepreneur's journey and entrepreneurship in general. There are many hurdles. There are many times when someone might have said, "This is too expensive. It's not going to scale. It's not worth the effort," but you stuck with it. As you said earlier, you are going to see this thing through, and you have. It’s cool to get to a point where you have a military optical contractor.

We're already dealing with sophisticated lenses. In the case of the contractor who helped us develop this, they were in the world of lasers. They’re making glasses to protect the military, particularly pilots, from exposure or disorientation if lasers were pointed at them. It was thinking out of the box. We’re reaching out to smarter people than we were, and incorporating all of their knowledge and insights. We’re tying it together with what we knew from the science, and then sitting down and coming up with a product. What was interesting too is it was a real evolution, because we came up with the Plano lens well before we came up with the prescription lens. That's just since 2022 that we were able to come up with that.

It's not leaving any stone unturned and making sure you find every way to bring this thing to life, and it has come to life. You mentioned some of the numbers. They're astounding that such a high percentage of people who were the lens found some level of benefit. Some completely avoided their headaches. Some got a moderate amount of benefit. Some got a little bit, but that's more than they're able to get from anything else, so they could continue with their day.

For most people, when I talk about Avulux, it's a non-pharmaceutical option. It can be added to anything that you're currently doing without any side effects. I wonder if you could tell me a little bit more about the efficacy that you've been seeing or the data that you've been collecting from people who wear an Avulux?

The efficacy has been unbelievable. We've been involved in selling our Plano lens and our prescription lenses for quite a while now. What we typically see is approximately 95% of the people who purchase an Avulux lens are people who are self-referring. They're making their understanding that they do suffer from migraine and that they do have light sensitivity. That is the criteria that will determine how effective Avulux is. If you do have latency with your migraine, chances are it's going to work.

From our experience online, as well as doing pilots with other large-object optometric groups and others who are doing clinical research, between 90% and 95% of people who try Avulux will respond to it. As we talked about, it doesn't mean it's going to go away completely or that it's going to be phenomenally better. The fact that 95% of people keep it is because it does help them get through their activities of daily living. When you think about the fact that light is the most bothersome symptom, it makes sense. You're helping them get through their day. Look at our days since COVID. How many of us spend our days on a computer all day long being exposed to a digital screen? You can understand and see how important an option like this is.

Speaking of light, most of this conversation is going to be about light, but the most famous type of light is blue light. a lot of times I have patients come in who are migraine patients. I'm talking to them and digging in a little deeper about their symptoms. They'll tell me, "I'm thinking about buying some blue light glasses from Amazon. I bought them already, but now I'm thinking about any better blue light glasses that should help me."

We know that there's a lot of debate on the blue light topic. It seems to be leaning more in a certain direction that blue-light blocking is not as helpful as we thought it once was, or that some people would like us to believe it is. I'd love for you if you could first share your understanding of blue light and its effects of it, then where that fall in the conversation with Avulux. It’s blue light versus Avulux if we're going to try to create a hot take here.

No problem. It's like trying to compare an egg with a baseball bat. I don't want to profess to be an expert in blue light because I'm not. Typical blue-light blockers block blue in a much lower wavelength range between 420 and 450 nanometers. That's not going to have any effect on patients who suffer from migraine. The science is very clear that the stimulation and then the elicitation of the impulse of the melanopsin-secreting cell occurs in a very narrow band at 480. You're not even hitting the right wavelength. Is there any anticipation that a classic blue-light blocker would work on a migraine? The answer would be, “Absolutely, not.”

TTTP 94 | Migraine Treatment

Migraine Treatment: The stimulation and then the elicitation of the impulse of the melanopsin-secreting cell occurs in a very narrow band at 480. You're not even hitting the right wavelength.

To reiterate, this is one of the most important things. I love that Harvard study and the graph that comes out. It's easy to understand. If you haven't seen the graph or if you haven’t tuned in to the previous conversation that I've had with Dr. Posternack, they have these migraine patients. They took them in a dark room and expose them to certain wavelengths of light and colors of light.

The graph that comes with is perfect. It's like for blue light, the bars go up. Amber light, the bars go up. Red light, the bars go up. Green light, the bars go down. That's expressing the patient's pain or sensitivity to light. It's very easy to see the difference. Blocking blue light is important, but that 480-nanometer range is where it's important, and then there's a different type of lens, which has been very popular in the discussion for migraine, also in concussion TBI, that type of space. That's the FL-41. I wonder if you can give me a little bit of background on what FL-41 is, and why it's been believed to be helpful.

FL-41 is a very interesting technology and it came out in the ‘80s. If you speak to the individual who invented it, the word FL stands for Fluorescent. It was originally created to mitigate the effect of the flickering of fluorescent light when that was popular in the ‘80s and early ‘90s. You'd be working in a store where you'd have these large fluorescent lights above you, and they would constantly be flickering on and off. They were very uncomfortable.

FL-41 is a technology that has been very old. It's a technology that's been around for a very long time to treat migraine. If you look at a graph of the absorption and the reflection of light, FL-41 does not block anywhere near the amount of 480 and 590 that we do as a position filter, but it also blocks green light. It essentially is not allowing the healing light through. What it's doing is it's not even blocking enough of the high blue and then the red amber range.

It's letting in the red amber because it's got that tint to it. Studies have found that even that red range is uncomfortable or potentially harmful for patients who are suffering from light sensitivity and migraine. The biggest key when I talk to my colleagues about FL-41 is when you're talking about light sensitivity as we have from the Harvard study, that green light has been shown to be soothing, and the FL-41 completely blocks that out. It's not helpful in that regard.

Those two comparisons are probably the most common comparisons that I get when I speak to my colleagues about how we can help mitigate migraine and light sensitivity symptoms that our patients have. They'll say, “Blue light blocking or FL-41,” but we find that those only help with small parts of the spectrum. In fact, they don't help with other parts that we need to help with. That's where Avulux comes in.

On the topic of FL-41, one of the companies that have been very prominent in that space is a company called Axon. I'd love for you to tell me a little bit about Axon. There's some big news here with Avulux and Axon. I'd love for us to share and celebrate this. if you wouldn't mind, maybe give me a bit of background on Axon and what's happening now.

Axon Optics has been in the industry for a very long time. They've always been the gold standard in the world of glasses. The company's ownership included a very prominent neuro-ophthalmologist and an optical engineer, Dr. Brad and Dr. Steve Blair. They are the original inventors of the patent of what Avulux is now, essentially the blocking of the 480 and the 590-nanometer wavelengths.

It's always been a very respected company. It's a company that has led the industry. They're probably the most visited website in and around the migraine space. It is very exciting because Axon has decided that they wanted to offer their customers the best and the greatest of what they consider to be for the management of light sensitivity and migraine.

They've essentially stopped selling FL-41. Now they have become an Avulux provider. Their reasoning is quite simple. There was nothing bad about FL-41. It did help a lot of people and it probably still does. It just does not have the science behind it that Avulux does. It doesn't have the proven clinical that Avulux has. They felt that this time, they want to offer the best and the most appropriate option for those who've been their customers for a very long time.

They were the biggest name in FL-41. Dr. Brad Katz, somewhat of a pioneer in this space, realize that what was happening at Avulux was more helpful to patients than FL-41, so much so that they've combined forces now. What does that look like from practitioners looking to Axon? Are they going to come to Avulux and there are no more Axon Optics available at all?

The Axon Optics company still exists. They just don't sell FL-41 anymore. They converted everything over to Avulux technology. Any provider that used to work with Axon is more than welcome to work with us. We would love that. Our goal is without a doubt to get the Avulux lens to as many people who could benefit from it as possible. My dream, and other eye-care professionals in North America and around the world, is that they would be able to at least offer Avulux as an option to their patients.

The takeaway is that eye-care professionals should and they will become the first-line caregivers for people who suffer from migraine. All they have to do is stop when they bring their patients in. Ask them, “Do you have to suffer from migraine? Do you have light sensitivity?” They'll be shocked by how many people will say yes. Being exposed to Avulux, you're going to change their lives.

Eye-care professionals should become the first-line caregivers for people who suffer from migraine.

The one thing I love about being on your show is you have great reach. You have great respect. This is such a great forum for us. To be perfectly honest, it was from your first episode a couple of years ago that we were fortunate enough that an eye-care professional in Australia listened to it and hooked us up. Now we are a mainstream lens in Australia. We got our class-one medical device approval there. It was through your outreach from this show. For anyone who is tuning in, we'd love to have you become one of our distributors. I promise you, your patients will be very happy that you do.

It's very good to know that we have an audience in Australia. We know that they're tuning in. In that last conversation, we had stuck with a lot of people across North America and clearly in other parts of the world. I'm happy that it helped support such a useful product. That's something that's going to help so many people. We can do this to make the optical industry and healthcare system better. That's amazing.

We'll go into how ECPs can get their hands on this in a second, but I want to go back to what you mentioned about becoming the first line here. I don't think eye-care providers have wrapped their heads around how we can be the first line of treatment and healthcare provider for somebody who's dealing with migraine. We're told in school, we're experts on the light, optometrists. Optics is our expertise. If we know that light is the primary symptom and trigger for these patients, we have the power to now mitigate that, especially with tools like Avulux at our fingertips.

It's important to start to wrap our heads around that and realize we have the power to help many people. I’m comparing myself to myself 2 or 3 years ago when I would write down migraine and move on to the next thing instead of writing down migraine, let's ask a couple of more questions. Let's see if light is one of the key symptoms or triggers, and now offer. The minimum thing we can do is let the patient know that there is a tool and treatment option out there that could potentially help them.

I feel like we're doing a disservice if we're not at least doing that even if we don't sell it ourselves, “Just so you know, this technology exists,” but if you're going to talk about it, you might as well be selling it. I want to make a quick comparison. Anytime I talk about implementing a new treatment protocol, strategy, or whatever it might be, the easiest comparison or analogy I can make is to dry eye.

Dry eye is one of the biggest topics in eye care these days. When I started venturing into the dry eye world a few years ago, I thought, “Where do I start? I don't think I have enough dry-eye patients. I'm going to have to start marketing and bring people externally.” Some of my colleagues and the experts in the space were like, “Just mention it and say the words out loud to your existing patients. You'll be surprised how many people have this issue that you can treat right there in your exam room.” That's absolutely the thing.

We implemented a very simple questionnaire. I know that's one of the strategies with Avulux as well. Implementing a simple questionnaire triggers a conversation, “You scored XYZ on this. That tells me that you're having these symptoms. Here's how we can help.” I went from thinking that maybe 10% or 20% of my patients had dry eyes, to now saying 75% of my patients are dealing with some form of dry eye.

The same goes for light sensitivity migraine. You start asking your patients when they even give you a hint of they might be dealing with light sensitivity or migraine. If you implement a questionnaire, that would help you even more. You start mentioning it and you'll realize there's a very large proportion of your patients and existing people in your exam chair, clinic, and office optical that are already dealing with it. It’s not like you got to bring this product in and start advertising like crazy. Have the conversation. That's where it all starts. Going back to what you said about having providers across North America, Australia, and other countries offering this to patients, who can offer this and how can they start to do that?

Any eye-care professional who has an interest in what's best for their patients can do it. All they have to do is contact us. We have all the materials that they would need. We have a training program that we can help them with. We have a very cool ECP starter kit that we learn from our best practices in Australia. Essentially, it is a package that comes with three Avulux fit-overs, along with sales materials for the patient and a light questionnaire.

Essentially, it's on a dry-erase marker. It asked the patients, "Do you experience light sensitivity Do you experience it in association with migraine?" Some very simple questions. If the patient answers yes to any one of them, have the conversation. What's cool and what we've learned from our previous experience is to have these fit-overs in your office. If the patient is symptomatic at the time, put them over their existing glasses. They tell you, “This is soothing. This is cool.” Maybe they don't know, they don't have the history, they're not sure, or maybe they're waiting for a migraine to come. They can take it home with them. Leave a deposit. Take the fit-overs. This way you know you're going to help patients.

We've created this kit that literally within 24 hours, anyone who wants to become an Avulux distributor can be educated and have everything that they need to start selling Avulux to their patients the next day. It is our goal. We do want to get this out to as many migraine sufferers as we possibly can. This is a disease that has been under-treated for years and years. If we have something as simple and non-invasive as what we have with no adverse events, they can only get better.

TTTP 94 | Migraine Treatment

Migraine Treatment: We need to get Avulux out to as many migraine sufferers as we possibly can. This is a disease that has been under-treated for years and years. If we have something as simple and non-invasive as what we have with no adverse events, they can only get better.

From any treatment standpoint, to have something that is effective and has no side effects or no adverse events seems like The Holy Grail. That's what everybody is hoping for and working towards. This is helping a lot of people. It's not necessarily going to help every single patient eliminate every single migraine, but it's going to help them feel better. On the other side, there's no downside to trying it and wearing it. That's amazing. ECPs out there, if you're interested in helping your patients in mitigating these symptoms, make sure you look into this. Dr. Posternack, where can people inquire further about Avulux?

We'd love you to visit our website at Avulux.com. There are tons of information on that website. All you have to do is reach out to us. Contact us through the website. We'll make sure you get started. We will do everything we can. We'll hook you up with our finishing labs. You can have your own lab. That's fine too. We have semi-finished. We can get to you, it doesn't matter how. Reach out to us and we'll make it happen.

I would encourage you to go to the website and read the science. The science is real. You'll be able to see a link to our clinical research. Read some of the testimonials. These are very real and honest testimonials. It's heartwarming to read some of the things that people write down. We're not here to treat or cure migraine. We're here to manage the impact of light sensitivity on those who have migraine. Many of them do have light sensitivity. By managing this one symptom, you can completely change their lives.

By managing this one symptom of light sensitivity, you can completely change the lives of people who have migraines.

Make sure you reach out through the website. The starter kit is something that's super helpful. I feel like when I'm implementing a new technology, I need my handheld a little bit. I need some simple instructions on steps 1, 2, and 3 on how to get the ball rolling. Having that beautiful starter kit to the box and everything well-made is going to encourage not just the ECPs, but their staff as well. That's always important. It is getting your staff, your front desk, your office manager, and everybody else on board, and speaking to patients the same way about these things. That's wonderful.

Thank you, Dr. Posternack, for coming on the show. Thank you for sharing all this wonderful information, and helping us bring awareness to this topic that is often neglected and overlooked, and realize how many patients we can help, and how many people around the world can be helped by such a simple and easy-to-implement technology. Anything else you'd like to share before we wrap up?

If you're going to be going to the Vision Expo Eastern New York City, please come by and see us. To put it into a more tangible perspective, in Canada, there are about six million people who suffer from migraine. In the United States, it's approximately 47 million. There are a lot of potential people who are waiting for your help.

Thanks, Dr. Posternack. It’s always a pleasure to chat with you. I'll see you in New York. I'll be there. If you're there, also give me a shout. I'd love to connect with everybody out there. Make sure you start by Avulux and chat with the rest of the team there to see what they're up to. Thank you, everybody, for all the support. I will see you in the next episode.

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About Dr. Charles Posternack

TTTP 94 | Migraine Treatment

Dr. Charles Posternack is the Co-Founder and President of Avulux, the company behind the world’s only lens clinically proven to block the harmful lightwaves that trigger and worsen migraine attacks.

After a long rewarding career as a practicing physician and senior healthcare executive, Dr. Posternack followed his heart to co-found Avulux. His two daughters both suffer from light sensitivity and migraine, and he set out to find an option that would help them. Today, those same women are two of the many Avulux success stories from around the world, and Dr. Posternack hopes that countless others who suffer from migraine and light sensitivity will enjoy similar life-changing benefits. Real-world experience shows that 90 percent of Avulux users find they can resume their daily activities while using Avulux lenses to manage the impact of light.

Dr. Posternack has been in the healthcare world for more than 30 years. He has held leadership positions as a CEO in both the not-for-profit and for-profit sectors. Dr. Posternack received his medical degree at McGill University in Montreal, Canada, and did his specialty training there as well. He has lived in the United States since 1992 and has held senior roles at the Cleveland Clinic and HCA Healthcare. He was also an Associate Dean for Academic Affairs at the Schmidt College of Medicine at Florida Atlantic University.

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Episode 72 - Living With Chronic Illness: A Patient’s Perspective Of Migraine With Amy Mowbray

Despite being a common chronic illness, migraine headaches are often misunderstood. How do people live with this condition, and how can we support the people who suffer from it? In this episode, Dr. Harbir Sian talks to Amy Mowbray, founder of the large online migraine community called The Migraine Life. Amy shares her journey in dealing with chronic migraine. She also helps us understand what it means to live with a chronic condition and the role that eye care professionals can play in helping our patients with migraine. Full of insight, learn more about migraines and how you can help.

Watch the episode here

Listen to the podcast here

Living With Chronic Illness: A Patient’s Perspective Of Migraine With Amy Mowbray

My lovely guest is Amy Mowbray from The Migraine Life, which is an Instagram-based migraine community. You may be wondering why I'm having somebody on from a migraine community. This conversation is so relevant for us as eyecare professionals. I've only started to learn how relevant it is over the last maybe year or so. The more conversations I have, the more I'm learning how important it is for us to talk to our patients to uncover the types of symptoms and things that our migraine patients are dealing with and learn how we can help them.

There are some amazing tools right at our fingertips at our disposal to help our patients who suffer from migraine. Dr. Charles Posternack, the President of Avulux, explained this technology that is so valuable and available to us. What I thought was going to be so amazing and helpful is to hear from the patient, a migraine sufferer herself, about how this technology has helped her and what her journey has been through migraine. Thank you, Amy, for joining me on the show. I appreciate you taking the time to come and share your journey with us.

Thanks so much for having me. I'm excited to hopefully educate people about migraine and share my own experience with Avulux in managing my sensitivity.

Thank you very much. You are from England. Why don't you tell us a little bit about yourself? Lead us into what has been your journey with migraine. When did it begin?

I grew up in Surrey, outside of London in the UK. Growing up, I never had a migraine. It wasn't part of who I was. I was healthy, went to school, played sports, and socialize with my friends. Luckily, I went through school and university without migraine pain as a part of my life. At the age of 21, I woke up one day with head pain. I thought I had this delayed hangover from New Year's Eve. I thought I had a bit too much over Christmas time. “What's going on?” Sadly, that head pain never went away. I've had continuous head pain for many years now.

That's where my migraine journey started. I had all these initial tests to rule out anything sinister. I went to my opticians and neurologist. They ruled out blood disc and all the other nasties you can have. Several months later, I was diagnosed with chronic migraine. I had a few episodes of tension headaches before at times of stress after turning in my dissertation but never like this migraine as it were. I've been spending many years trying to reduce the level of migraine I was having and also learn to live with it at the same time.

I want to touch on the whole learning to live with it. That's an unfortunate part of it. You have to accept that this is going to be part of your life and continue to endure it. Once you discovered that it is a migraine that you're dealing with, what are some of the triggers and symptoms you experienced, and the frequency of the headaches?

It probably makes sense if I start with the frequency first. I have what's called chronic migraine, which means I have fifteen or more headache days per month. For me, I had 30-plus. A part of the diagnostic criteria for chronic is fifteen or more headache days per month of which, at least eight is the nature. This must go on for more than a three-month period. This is such a different disease. I see it very differently from your typical migraine. Everyone knows someone who's got a very infrequent episodic migraine where they have one attack every six months or so. This is completely debilitating. The World Health Organization recognizes it as the same level of disability as people with quadriplegia or active psychosis. It's huge.

Migraine: There's so much more than just being offered paracetamol by your doctor or being told it will go away. There really is so much you can do to help.

When I was at my worst in the first few years, I was having daily head pain and symptoms. About twenty days of the month, I was also having full-blown attacks on top of this. That has reduced in frequency. I still have daily head pain but my attacks have reduced by about 50%. I'm having attack days about ten days a month. They are also less severe and shorter in duration in general. It's encouraging but it's still obviously a huge impact in terms of disability and what I’m able to do day-to-day.

The triggers for me have been tricky. If you're at the end of the spectrum as I am with chronic, it's harder to distinguish. You're always somewhere within the migraine cycle. All the basics we know help with managing migraine in terms of good sleep, good hydration and eating regularly, if I don't do those very well, it often triggers my head pain. Stress has been a big one for me as well. If I have probably an acute episode of something stressful, that's almost the most obvious trigger to cause a quick attack.

Avoiding triggers and doing the basic daily activities like hydration, sleep, and all these things are important. I follow you on Instagram. I can see you've experienced different treatment modalities. I'd like to hear what your experiences have been as far as certain treatments and prescription medications you can remember that have been part of your routine as well.

Migraine management from a medical perspective is split into preventative and acute treatments. If you’re having more than 4 or 5 attacks a month, normally, you'll be offered preventative treatment. I initially tried all of the old-school migraine preventatives. They are all medications that were designed for other things. They're epileptic drugs, antidepressants, and blood pressure medications.

They're all things that weren't designed for migrant patients that I found as trial and error. This helps reduce the burden of headaches in some patients. I try amitriptyline, topiramate, pravastatin. I've tried a whole host of them. Unfortunately, they didn't make any difference in managing my pain and all my migraine symptoms. A few of them came with awful side effects. It’s almost worse. At one point, I was more unwell from side effects and medication than I was from migraine itself.

I then progressed to trying some injectables. I had Botox for chronic migraine. I had occipital nerve blocks where they inject into the back of your skull, essentially. At the same time, I was managing acutely with nonsteroidal, naproxen, ibuprofen and triptans, which is a class of drug designed specifically for migraine. I also added neuromodulation devices. The main one that has been beneficial for me is the Cefaly device, but there are other ones like the sTMS, the gammaCore device, and the Nerivio in the US. There are different options. This is only getting more advanced as research and technology come on.

The game-changer for me in terms of medical treatments has been with the anti-CGRP drugs. This is the first class of drug that has been designed specifically for migraine patients. They found that during a migraine attack, a special chemical is released in the brain. In a very simple layman's term, this medication blocks the receptor. That has been the thing that's reduced my attack days from 20 to about 10 days a month. That is still ongoing. There are different variations of that drug that are available to patients.

Wearing sunglasses all of the time is a very easy trap to fall into. As a chronic migraine patient, it's the same as wearing earplugs. If you live in earplugs and then you take them out, the whole world is so loud all of the time.

That's probably on the medical side. I've also tried other tools. I almost call it my migraine toolbox, which includes some of the devices. It also includes clever ice packs you can wear and mold around your head and neck, which provide huge amounts of relief. Ice helps me greatly during migraine attacks. I also have eye masks, Avulux glasses, earplugs, and noise-canceling headphones. It takes you a while to figure out what works for you. The toolbox is almost as helpful as my acute medication in managing attacks.

The other side of things I've tried has been all the alternative therapies. That could be a whole focus in itself to discuss all of that. Out of all the different things I've tried, there’s nothing that helped me massively. I'm working with a physio to help with posture intention and rebuild some of the muscle in my body that's not as strong as it could be, primarily from spending so much time in bed for years and building up the strength again that way. There's so much more than being offered paracetamol by your doctor or being told it will go away. There is so much you can do to help. It's just trying to find out what is going to help you.

The trial and error aspect of this whole thing is incredible. It's not a new condition by any means. We've known of this for so long but as a society and as medical professionals, we understand this so poorly still. We have to say, “Let's try this other medication that's got this long list of side effects.” It's incredible that that's where we still are to some degree. There's a lack of understanding and awareness.

I felt like the lights were turned on for me. When I see patients write on their sheet, "I get migraine," I'll be asking them about, “Do you get headaches?” They say, “I get migraine quite regularly.” I'll dig in a little more, “Tell me about the symptoms. Tell me what you think the triggers are.” It blows my mind how little I knew about how many of my patients were suffering from this stuff. My level of empathy has gone up so much. I'm like, “I can't believe that you guys have had to deal with it.” Few patients who suffer from migraine have had to deal with this.

It blows my mind that optometrists don't because a headache is such a common thing when there is eye strain or difficulties. When you look at how much time in medical school the doctors have spent on migraine, under 3 or 4 hours in the whole medical training is spent on primary headache disorder. You think, "It makes sense. If the doctors haven't been given it, why would the optometrist be given it?" There's this huge lack.

There's one thing which I'm preaching to my colleagues. One thing we were taught as optometrists is that we are the experts on light. The foundation of optometry is refraction, which is light being bent in different directions. We are supposed to be experts on light. If light is one of the key triggers of migraine, then we should be understanding how we can help to modulate, reduce or facilitate the light part of the triggering system. That's how we could start to begin to talk about Avulux and how it helps. Light has been shown to be a trigger for 60% of migraine attacks. If we know how to control that, eye care professionals can be a big part of helping our migraine patients.

You mentioned Avulux in your toolkit there. You're wearing a pair. If you're not watching, go to YouTube. You can see the glasses that Amy is wearing. They look like a nice lightly tinted pair of sunglasses but they come in a lot of different frame styles. I'll tell a little bit from my perspective but I would love for you to share with me and the audience where this has fit into your toolkit.

Migraine: One of the symptoms of migraine, which is the very first stage, or even when people are in an aura, is aversion to light.  

Firstly, it's important to explain. For migraine patients, light is pain. We call it photophobia. There's this misconception that it's a little bit irritating or I don't like the bright lights. Light to migraine patients causes pain. There are lots of research to show this. That's the first thing. The second thing is the trigger versus the symptom. That's tricky, especially if you're chronic like me. Not only is a horrible bright light in my eye will likely to trigger an attack. It also can be an early warning sign that an attack is already in progress.

One of the symptoms of migraine, which is the very first stage or even when people are in an aura, is this aversion to light. If that light is there, it can speed up the attack side further and draw you into a full-blown attack. For me, light sensitivity was always an issue. In hindsight, I probably spent a lot of time making it worse by wearing sunglasses all of the time, which is a very easy trap to fall into as a chronic migraine patient.

It's the same as wearing earplugs. If you live in earplugs and you take them out, the whole world is so loud all of the time. I tried different glasses. I tried the plastic FL-41s. I've tried the blue light blockers. I've tried quite a few. If I'm honest, I was skeptical when Avulux reached out to me. I was like, “No, I've tried that. I’ll just wear my sunglasses. I'm fine. Leave me alone.”

Avulux is different. They not only block blue light. They absorb 97% of all wavelengths of light that have been found to be irritating to migraine. That's the blue, the red and the amber. There is some interesting research about the benefits of green light for migraine patients. Avulux allows in the green light while blocking all the other harmful lights. They take all the bad stuff out and let all the good stuff in for migraine patients. They have amazing clinical science that backs all these claims as well. It's one of these things where as soon as I tried, it was an instant, “Wow.”

It's hard to explain because you do have to experience it for yourself. It takes all of the burn and the pain out of light for me and so many other migraine patients. You can see there is a slight tint to them but they don't distort color in the same way that the traditional FL-41s make everything red. It's not a very nice switch. The main benefit is having reduced light sensitivity and the help that has on migraine as a whole. Day-to-day, if you're watching a film or if I'm looking at you on the screen, it's nice to see you in color you should be rather than distorted as well. That's a huge bonus for them.

If you do not suffer from migraine and the light sensitivity that comes with it, I don't think there's any way to truly know that light hurts. That is such a foreign and strange concept that light hurts. A lot of patients try to express that but they can’t vocalize or verbalize it that way.

If I turned on a light early in the morning to someone who doesn't have a migraine, your eyes are adjusting. You don't like it but it doesn't cause pain. It's not painful. It's like, "We don't like it. The contrast and shock are a bit much." Whereas for migraine patients, it intensifies the pain.

What we understand about this physiological pathway there is that the melanopsin cell being released by retinal cells is found to be the culprit for the pain pathway, not just the light pathway but the actual pain pathway. These Avulux lenses reduce the transmission of the certain wavelengths of light that trigger that melanopsin pathway. That's blue, amber and red. Those are the three. Green was shown to be soothing, calming or helpful. They allow in the green which is so cool. That makes it a very unique and precise filter.

If something's reducing the impact and burden of migraine and reduces their medication, it's as good as treating it with something else.

A lot of people say, “It's just a tinted lens,” but it's a very unique filter that allows in certain wavelengths and doesn't allow in others. You mentioned the FL-41 which blocks certain wavelengths of light, the blue wavelengths primarily, including the green as well. Someone could say, “It's helpful. It's blocking blue,” but it's also blocking the light that we want to have come through that's been shown to be helpful. It's also not blocking the red and the amber.

I know a lot of practitioners and colleagues of mine out there use FL-41 quite frequently. This is something that will hopefully help them open their eyes a little bit to the importance of modulating certain wavelengths of light. We are the experts on light, so this is our opportunity to be precise about how we're using light and preventing it from causing harm.

Some of the interesting things you are speaking from your personal experience are powerful for someone who has suffered severely from migraine for years. Some of the stats that Avulux shares are pretty amazing, 90% of their subjects find relief and are able to continue with their daily activities. You've shared with me about how these migraine lay you out. You are out for days and can’t function. The fact that 90% of people in that type of situation are able to continue with their daily functionality is huge for their own productivity and the economy, in general. How many millions or billions of dollars are lost from lack of productivity due to migraine?

The thing that hit home for me as a healthcare practitioner is the statistics show that 74% of Avulux wearers were able to reduce or eliminate their usual medications. We talked about how crazy some of the side effects can be for these medications. They were trial and error. Who knows what the long-term effects will be? If three-quarters of people can stop or reduce their medications, that was powerful. That was huge. These are important things for people to know.

Part of the challenge Avulux has is getting people to see that the glass is not the same as the blue light glasses you could buy on Amazon but a medical treatment for migraine. That's what it is. I’m not sure if they are allowed to say that. If something is reducing the impact and burden of migraine and reducing their medication, it's as good as treating it with something else.

Going back to the impact on the economy and the burden, Avulux has initially enabled me to start working again. Before Avulux, I had to do everything on my phone. People are always amazed of my page. I did everything on my phone. I couldn't look at a laptop. I could barely cope with a small iPad. TV was completely out of the question. To do any proper work, you need to be on a laptop.

Since Avulux, I've been able to use a laptop. I still have it timed down nicely with all my filters on. I'm talking to you now on a laptop. I'm able to do small amounts of work. The benefit is huge. They also have helped me tremendously in the autumn and wintertime, which for many migraine patients is challenging with light because from 4:00 PM, it gets dark. Thankfully, it's getting lighter again but the contrast is challenging.

Migraine: Light contrast and shock for migraine patients actually intensify the pain.

When it's dark outside, there is suddenly this need for artificial light inside. Before Avulux, from 4:00 PM onwards, I would find it hard to function with anything. I couldn't cook. I couldn't prepare a meal because I had to have these big lights on. I would have lamps on in the room and use pieces of furniture or cushions to block the direct impact. That's how bad light is affecting people with migraine. You're moving chairs or sitting with your back to the lamp that is in the back of the room.

Now, it's not a problem. I can cook again. I can watch TV in the evenings. I can speak to my friends and see them. It has a huge impact. Unfortunately, for me, it has never been like I put them on and my attack disappears, but my actual level of function and what I'm able to do and achieve in a day and not be stopped or interrupted by migraine rearing its ugly head is huge with the help of Avulux.

There are two sides to how much we take those little things for granted. Someone in my position who doesn't suffer from migraine can cook a meal with all the lights on or watch something bright on my phone. There are so many people out there who are unable to do those basic simple things because they're suffering from a migraine attack. The other thing is we might think it doesn't sound like that much of an improvement if you're able to cook a meal. That is a huge improvement in your quality of life to go from being bedridden or closed up in a dark room to being able to communicate with the outside world. That's a massive difference.

You have to remember as well that I'm at such a severe end of migraine. If you're someone who has five attacks a month, and the rest of the time, you're free. Maybe there is the difference of you wear them when you're watching something flashing or you go to a bright supermarket that's a trigger. It might be that's all you need to do and the attack doesn't develop and you're not triggered by light.

That's amazing to see that something so simple like a pair of lightly tinted glasses can be so beneficial. You mentioned being careful on how we phrase things being medical devices. In Canada, Avulux does have Health Canada approval as a class-one medical device. It's safer to call it a medical device here. That is technically classified as a medical device used to treat light sensitivity. The primary function of that is for patients who suffer from migraine and have light sensitivity as a trigger.

It is that changing imperceptions though, but you have to be careful.

That's the conversation that we're going to have about this lens with my colleagues. Since we're talking about it being a class-one medical device, in Canada, it's available as non-prescription and prescription. Anybody out there who are optometrists or opticians, you can order these lenses with single vision and progressive lens prescriptions.

You can edge them yourself or at the lab. You can buy them pre-made like what Amy is wearing or as uncut and put them into lenses or frames for your patients who would like to have a pair in their own frame. Is there anything else you want to share regarding Avulux? Are there any other little details or pieces of information that you think would be helpful?

The only real motivation we have for growth is to spread awareness and for other people to not feel alone with migraine.

Something that comes up quite a lot has to do with the pressure. Lots of migraine patients struggle with any pressure on the sides of their head, on the temples or on the bridge of the nose. It's not something I hugely found a problem with sunglasses before but sometimes the pressure was a lot, so it's worth mentioning. The frames are extremely lightweight.

They have released their featherweight frames. They're almost as light as glasses can be. If you do struggle or you're worried about the pressure being a trigger in itself wearing them, then have a look. There are so many different frame designs you can choose from, and different ones that are lighter and hopefully, won't be triggering in that sense.

If you sit there with migraine and light is a big deal, you probably couldn't care less what they look like on your face. Honestly, if they help, they help. They have released so many cool colors, designs and styles. We're allowed to look good as well as feel better too. Have a look at their website for all the different frames and color options because there are so many to choose from.

That's important too. It should look good. Just because it's a medical device doesn't mean it has to look ugly. Also, in Canada, you can use your own frame. If you happen to be shopping around and find a nice frame, ask the eye care provider to order the lenses and put them in that frame for you. You have that full flexibility to put them in any frame you want, whatever look you're going for.

If you want to learn more about Avulux, it's Avulux.com or Avulux.ca. You can reach out to me on Instagram @HarbirSian.OD. You can reach out to Amy. Amy, we're going to talk about your Instagram and your online presence. I'd like to talk more about it. First, why don't we start with what is your Instagram handle?

It's @The_Migraine_Life.

You've done such an amazing job of building this platform and becoming this ambassador and this advocate for others who suffer from migraine and other chronic conditions because there's some overlap there. When did you start to build this presence on this platform? How did you build it?

I started the page in 2016. I'd been ill for just over a year. It was during one of my worst attacks that the idea came to me. I had an attack that go on for about two and a half weeks. I was completely in bed and unable to do anything, so my mind is wandering away. At this point, I have never met, spoken to or heard of anyone else who had chronic migraine. It's not something that any of my friends or family have ever had. I didn't know it existed for anyone else. I thought, “I've got this awful thing and no one understands and gets it.”

Migraine: It's never been about growing. It is to spread awareness and help other people not feel alone with migraine.

Initially, when I started my page, it was to see who else was out there. At the time, I don't think they were many other migraine pages or even chronic illness pages that I was aware of. I'm sure there were a few. It has come on so much in the last few years as Instagram and social media has developed. At the time, it was very new and basic.

I would post a picture. It was almost anonymous. I didn't share any photos of me. It was things I have created or sharing resources I have found. Slowly, I built this small but lovely community of people. There were a few hundred of us, which at the time feels like so many people. I said something that I experienced, thinking nobody else in the world understands. They have told me they experienced the same thing. They are my age and living in America. They’re not someone so unrelatable to me.

It developed from there. I'm lucky that I've always felt quite comfortable being open and talking. I've never felt particularly uncomfortable or nervous about filming myself talking. I've always been a bit of a performer since I was young. It comes naturally to me and that doesn't faze me. That helps people get to know me and relate to me. It also allowed me to share with the community the real me and some of the more vulnerable sides of living with chronic illness. It developed to where we are now. There are 20,000 of us on Instagram now, which is huge.

Many people always ask about growing and things. I've grown quite slowly and steadily but it has never been about growing. If I think of hundreds of people in a room, all sitting and talking about chronic migraine, that's amazing. There's quite a lot of emphasis on growing to hundreds of thousands. The only real motivation I have for growth is to spread awareness and for other people to not feel alone with migraine. It's amazing that we have grown, but it's having that community and space to talk openly about my own journey. If we raise awareness and help educate others along the way, then that's awesome.

You’re right. If you think about having a few hundred migraine sufferers, that sounds like a lot of people. Here you have 20,000 on Instagram. I go through your Instagram and follow you. I see the engagement and how much what you're sharing helps other people. If I have any takeaways from what I see from you, one of them is you started with providing value. Your goal was simply like, “Let me share useful information and see if it helps people.” If you start with that, that's always going to be the most authentic thing.

The authenticity in your case is so key. You're so open with sharing thoughts that maybe a lot of other people wouldn't be comfortable sharing about the fear of getting a migraine or the trauma. When you get a migraine, it reminds you of the bad days and sharing that stuff. Do you feel that authenticity has been helpful for you to build this community?

Being myself has allowed this community to grow. It's not that it's a sales thing but people buy from people. People follow you for the same reason, for being who you are. I see this all the time in the chronic illness community, where people start pages. They try and be like somebody else's page. If anyone says, “I'm starting to think of getting into an advocacy for migraine,” I’m like, “Be yourself. Share what's important to you. Share your truth and what you're trying. People will like that and relate to that because it's personal to you.” That's important if you're thinking of starting a page. It is how my page has grown.

Migraine is this neurological disorder all on its own. People who live with migraine have migraine all of the time, even when they do not have a migraine attack. 

What you're saying about fear and the impact on people's mental health, I still find that hard to talk about. It doesn't come as naturally to me, but I see the power every time I share about it. It's not always the mental health side. It's always the weird stuff. The things that you think, “I'm experiencing this symptom. I have this thought before I do something because of migraine. No one else will relate to that.” It's always those things. I'm receiving all these DMs or comments. People have been waiting for someone else to acknowledge it. There is so much power in that. That's what motivates me to be open and say, “I am so fearful because of X, Y and Z,” and share and be honest.

It's powerful that you do that. You help others realize that they're not the only one dealing with that or it is okay to speak openly about that thing. We talked about providing value, being authentic, sharing and being open. If somebody else out there wanted to create a platform and become an advocate or share valuable information in whatever industry they're in, the key things I have taken away here are to provide value and be authentic. One of the things you said is being comfortable on video or camera. Maybe that goes at the top of the list because otherwise, nobody is ever going to get this information from you.

It is, but if you're not, you don't have to be. I have a friend who has a chronic illness account. I've made friends with her through being on Instagram. She isn't comfortable. She doesn't love being on stories. She isn't one for being chatty and open, probably oversharing at times. She communicates through her blog and writes amazing articles and stuff people relate to. It helps, especially on Instagram. It's such a video platform. There's all this pressure to be making Reels. We can't all have as crazy transitions as you. You’re killing it with Reels.

If that's not you and you don't want any extra stress or pressure when you're chronically ill, and filming can feel like the last thing you want to do, find something that does work for you. It doesn't have to be filming yourself and talking. It can be a podcast even if it's just your voice or taking part in research or writing. There are so many different ways you can be an advocate without being visually on screen.

There are other platforms and other ways to make a difference if that's your goal. I read something that I'm guilty of. I wanted to clarify this. That is saying migraines instead of migraine. If you wouldn't mind quickly clarifying that for everyone.

People always refer to migraine as migraines. Even when you said it, I have to stop myself from interrupting because it's not always helpful. Most of the time, when you referred to it before patients and they've got migraine. It wouldn't be helpful if you always corrected your patients and say, “It's migraine.” Migraines is with an S because we think of headaches. That's what we think of migraines.

The problem is migraine is this neurological disorder all on its own. People who live with migraine have migraine all of the time, even when they're not having a migraine attack. If I say, “I've got migraines,” I might be in a migraine attack at the moment. For example, if we think of something else like epilepsy. We don't say, “Someone's got epilepsies.” We say, "They have epilepsy."

All of the time, we don't think, “You only have epilepsy during an epileptic fit or a seizure.” They live with epilepsy all of the time. The importance is more towards the chronic or the high frequent episodic that we are managing migraine. I'm managing migraine all day, every day, even when I'm not in attack. I'm preventing the buildup of an attack. I'm managing triggers. I'm doing so much. That's why it's important. I always say, “Drop the S. We help reduce the stigma and see it as this neurological disorder all on its own.”

Migraine: People buy from people, and people follow you for the same reason: for being who you are.

That is helpful. Thank you for clarifying that. Even for me, I know that it's supposed to be migraine but I never understood or I never asked why do we want to make that distinction.

I have a Reel on my page, which is far more sustained from what I just rambled.

What you said was perfect. This is the platform for you to share openly in long-form if you like because that's the whole point of the show. I'm going to go look for that Reel. If you don't mind sharing it with me, I'll put them on my page as well. It’s important to start thinking about migraine as this chronic thing that you're dealing with every single day.

Epilepsy may be a good analogy in some cases, maybe not in others, but in the sense that a person who has epilepsy always has it. Whether they're having a seizure or not, they still have the condition and the same goes with migraine. Just because you're not having an acute attack doesn't mean you don't have the condition that you're dealing with all the time. It is a very important distinction. Is there anything else that you would like to share before we wrap up, Amy?

If you have migraine or you have a patient with migraine, I know how isolating and lonely it can be. It can feel so overwhelming. I want to remind people that there are so many different treatment options, things and tools you can try like Avulux. Hold onto some hope that you can improve. Hopefully, my own story of being completely bedbound and debilitated but working and functioning so much better gives you some hope. Keep going.

Those are nice motivating words and words of encouragement for those who are dealing with this and suffering. Thank you for being the advocate and that voice to support those who are dealing with this condition, and helping share more information and knowledge for those people like me who are slowly becoming more enlightened of it. Thanks for joining me on the show, Amy. I appreciate you coming on and sharing all your insights.

Thanks so much for having me.

Thank you, everybody, for all the support. We will be back for another episode. We'll see you soon.

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