TRANSCRIPT

Sponsored in-part by Neura Health.

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Molly O’Brien: Welcome to Spotlight On Migraine, hosted by the Association of Migraine Disorders. In this episode, Neura Health Medical Director, Dr. Thomas Berk, explains why people with migraine experience sensitivity to external stimuli. He also offers some insight on how to manage these sensitivities. 

Hello, and welcome to Spotlight On Migraine. I’m your host, Molly O’Brien. 

Migraine and sensitivity. Many people living with migraine experience sensitivity to light, sound, smells, even touch. So what is with that? Well, today we’re going to dive in and talk all about why migraine makes us so sensitive. I’d like to introduce and welcome our guest, Dr. Thomas Berk. Dr. Berk is a neurologist and headache specialist. He’s the director of Neura Health, a virtual neurology clinic offering specialized migraine and headache care, among other neurological conditions. Dr. Berk, thanks so much for joining us today. 

Neura Health medical director Thomas Berk, MD, FAHS : Thank you so much for having me. 

O’Brien: It’s always a pleasure to talk to you, and this is a really cool topic, so I know you’re going to give us a lot of great information. Now, before we get started on diving into some of these questions, I want to tell people a little bit more about Neura Health. Neura Health is a virtual neurology clinic that can connect you with top neurologists and physician assistants. Neura Health provides unparalleled proactive care for headache and migraine, sleep disorders, neurological pain, epilepsy, concussion, and more. Staffed by top board-certified neurologists and subspecialists, Neura Health connects patients with a neurologist via a video visit within just a week. Patients receive a personalized treatment plan, a dedicated health coach, and a concierge team to manage their neurological disease. 

Neura Health‘s quality care improves the quality of life for people with neurological illnesses. And if you are interested in trying Neura Health, you can receive $15 off your first month of membership. Just use the discount code AMD15. So with all of that being said, again, thank you, Dr. Berk, for being here. Let’s jump right in. People experience various degrees and types of sensitivity, people living with migraine. Kind of an executive-summary type answer – why is this? Why does migraine make us so sensitive? 

Dr. Berk: I think you kind of have to go back and think about what migraine really is, to begin with. Migraine is a genetic predisposition that you have. Your brain is made up a little differently by definition. Certain things will cause your brain to react in different ways. It’s almost never a 1:1 ratio of a trigger or a sensitivity leading to a symptom. It’s usually a constellation of triggers that eventually create a constellation of symptoms. So having that genetic predisposition, usually, you will be able to point to people at your family that also have this genetic predisposition. Sometimes you can’t, and that’s okay because it’s possible for you to be that first person in your family to have it. It basically means that your brain is just that much more sensitive to little things, changes, etc.

O’Brien: I love that explanation, and it’s almost like a validation to know that…maybe I don’t want to be like this. I don’t want to be sensitive to the light or the glare. This is just how my brain is. So it’s a little bit of a validation knowing that this is just brains, and nervous systems are created differently, and it can be a genetic predisposition.

Dr. Berk: Exactly, exactly. 

O’Brien: So let’s talk a little bit more about brain nervous system central sensitization. Little bit tricky to say, but I got it out. So what is that, and what causes that? 

Dr. Berk: So that is already a situation where you aren’t necessarily sensitive because of outside factors, specifically. It’s that your brain has been inundated, almost so consistently, with specific messages, that there are changes, that there’s something that your brain doesn’t like, to the extent that even when that isn’t there, even when the outside trigger, the thing that you’re sensitive to isn’t really bothering you that much, your brain is that much more heightened and is on alert, and any little thing, or sometimes nothing at all, can still lead to the symptoms of migraine and what those sensitivities lead to.

O’Brien: Okay. And how do we tie that in with migraine? If we have central sensitization, and we have migraine, how does that all tie together? 

Dr. Berk: I think it’s something that a lot of people kind of know from experience, which is more migraines, we get more migraines, we get more migraines. Oftentimes, what we see is, if you’re in the rut of a really severe attack, more and more things start to bother you. And sometimes you’re asking yourself, well, what is my trigger? What is it that’s leading to this getting worse? And the answer sometimes is all of the above. It’s a little bit of all of these things, and sometimes even when there isn’t something right there that’s bothering you because you’re at such a heightened state of sensitivity, it becomes that much harder to get down from that state.

O’Brien: I love that explanation, and I’m going to send that to everybody I know who asks, well, why are your attacks getting worse or more frequent? I’m going to send that exact answer. So thank you.

Dr. Berk: Of course.

O’Brien: So well explained. We appreciate that. So let’s talk about that a little bit more because people with migraine can experience a sensory overload. If you’re already in the depth of an attack that just doesn’t seem to be going away, all the stimulus can feel uncomfortable and bothersome. What do we know about how migraine attacks or living with migraine, how that can impact our sensory pathways and our sensory processing? Can it impact it? 

Dr. Berk: Yeah, I think it definitely can, sometimes consciously, oftentimes kind of subconsciously. What happens, a lot of times, is you are sensitive to a specific outside factor, a trigger, and, obviously, you’re going to want to try to avoid exposure to that thing. Sometimes what that actually leads to is additional sensitivity just because you are avoiding anything that is even secondarily or further removed from that potential trigger. And you find yourself so far removed, so limited, so avoidant of any other potential trigger, that little things start to actually trigger you that much more. So it can become a very difficult, sometimes, box to break out of.

O’Brien: Again, put so well, and we’ll get to the what do we do about it? Is there anything we can do about it? 

Dr. Berk: Of course.

O’Brien: So we’ll get to that in a minute. I do want to ask, and it’s almost like the trigger debate, but not quite, but I’m curious your thoughts on is migraine and sensitivity kind of a chicken-or-the-egg type situation? Does migraine make us more sensitive? Are we more sensitive if we have migraine, or is it neither, and it’s both?

Dr. Berk: Yeah. I think that one can’t be true completely without the other. For instance, we talked about how characteristic of migraine sensitivities really are. Part of it is when you’re in the midst of an attack, there are sensitivities that are literally part of the diagnostic criteria of migraine. So we talk about that. We talk about how there are some sensitivities that we talk about, very famously, light and sound. Well, what about things like smell? Arguably, it may not be part of the diagnostic criteria but may potentially be even more sensitive of a question to ask patients to try to figure out is what you’re experiencing migraine or not? Well, are you sensitive to smells during that attack? So that that’s one aspect of sensitivities with migraine. 

We also are always thinking about sensitivities in the context of things that trigger an attack also. What was it that I was doing right beforehand? So I think it can be both sides of the same coin. It can be the chicken. It can be the egg. Sensitivities are everywhere. It’s just built inherently into, like, the DNA of migraine.

O’Brien: I appreciate that. I want to talk a little bit, just briefly, about a couple of those very common sensitivities, like light, for example. Something like 80% of people with migraine experience light sensitivity. Do we know why that is, what’s happening before, during, and after an attack, where light can just be really bothersome?

Dr. Berk: There’s been a lot of research over the last 10 years or so into what photophobia in migraine really is. It isn’t all kinds of light, and it isn’t necessarily the same thing for everyone. But one thing that we definitely know is light that is in the, like, blue spectrum and within specific frequencies, things that are kind of most similar to sunlight are definitely what people who have migraine are more sensitive to. We see something very similar in people who are recovering from concussion. To an extent, it’s a similar process. There’s a very high incidence with photophobia there too. Same kind of light sensitivity there.

One interesting thing that researchers – and it’s mainly a group out of Beth Israel Deaconess, that Rami Burstein and his group has published extensively on photophobia – they’ve also noticed that there are certain spectrums of light within the green light spectrum that are somewhat protective, and sometimes exposing yourself to that, to those specific frequencies of green light can actually allow you to tolerate the blue light shortly afterwards. What that means for many people is you don’t have to live your life in a very dark environment. 

If there are ways to try to avoid the specific parts of light that are most bothersome that really throw you off, that can be done with whether it’s filtering out the backlight out of computers, or tablets, or your cell phone. Night-shift mode is very helpful or changing the settings on your computer. There are a lot of ways to do that. Sometimes even getting a screen protector that’s a blue-light filtering screen protector…exactly, exactly. Very famously, blue-light filtering glasses can be very, very helpful. And now there are even products that can help actually expose you to some of the frequencies of green light that are helpful too. 

O’Brien: I just find it fascinating. And the more we learn about how light impacts us, whether it’s uncomfortable, or discomfort, or pain, or actually therapeutic, it’s fascinating to me. So appreciate you highlighting that for us. Now, some people do have…well, a majority of people with migraine have light sensitivity, but other people don’t have that. Some people are extremely sensitive to smells. Some people are extremely sensitive to sound. Do we know why people are sensitive to different things? 

Dr. Berk: I think a lot of it is the fact that migraine manifests differently. Even if you’re two people in the same family, your migraine can look, sometimes, very, very different. One person can have higher frequency, lower severity attacks. Another person the exact opposite. For some people, they can have aura. It’s possible for another person in the same family who has the same genetic predisposition not to have aura. It’s sometimes possible to have vestibular migraine and somebody that you’re very closely related to have no vestibular issues whatsoever. People will have different prodromes. I think it’s just the fact that everyone’s brain is different, even if you have a very similar predisposition, or even if you were to do some kind of genetic test, the actual, same genetic predisposition, the same genes that carry that risk, it manifests differently. 

O’Brien: Sneaky migraine. It’s so sneaky. I want to talk briefly about another symptom that people might experience in sensitivity. We talked a little bit about light. Talked a little bit about sound. What about touch? Some people are very sensitive to touch, allodynia, or even like when we go outside, and we’re exposed to cold air or warm air, or your scalp can feel painful. Do we know what’s going on there and why some people either have sensitivity to touch before, during, or after migraine attack, or might some people develop it? 

Dr. Berk: Yeah, I think that those are actually a couple of different things. 

O’Brien: Very true.

Dr. Berk: So you might be somebody who is particularly sensitive to cold when you walk outside, based on the fact that you have a history of migraine, and that might be separate from somebody who, let’s say, has allodynia. So what allodynia is is a sensation where a normal stimulus is perceived as something that’s painful. We talked a little bit about central sensitization, that being when your brain is overloaded by specific messages, especially pain, it will always assume that the message that’s being sent is pain. And that’s really what allodynia is. 

So you have just an overload of consistent messages being sent from an area of your face, or wherever it would be, to your brain, saying there’s pain over here if somebody just touches your hair, then. Very famously, people who have maybe a trigeminal neuralgia, and the wind comes and triggers something then, or even if it’s not necessarily triggering an attack, but that sensation, just feeling different and feeling painful doesn’t feel like air. It feels like somebody is stabbing you into that area. It’s an electric shock type pain. That sensation is different.

When we talk about light sensitivity and sound sensitivity specifically, it’s more during an attack. If you were exposed to light, if you were exposed to sound, if a kid was running by you, or a fire truck was blaring right outside your window, would that bother you even more? These are situations which are a little bit different. Oftentimes, with allodynia, you’ll feel that way even between attacks. So it is quite different that way. 

O’Brien: That’s good to know. So now that we have a little bit better understanding of what causes these sensitivities and what is happening within our body, a big question is, what do we do about it? Is there anything we can do? Can we kind of reset our bodies? It’s kind of two questions. Because what do we do in the moment, and then, what do we do to make things get better if possible? 

Dr. Berk: Yeah, it’s a question that I would say every headache specialist gets multiple times a day because these are the situations that we really specialize in. And the first thing that I would say is if you don’t already have a headache specialist, somebody who kind of lives and breathes headache, I would definitely recommend seeing somebody who is very experienced coming up with a specific kind of strategy that is unique for your situation. And everybody’s situation is going to be a little different. If you’re somebody where the big issue is you’re very limited, and it’s going to be very difficult for you to expose yourself to any of these triggers, that might become the focus, in addition to anything else that we’re doing. Depending on what your work situation is like, what your family situation is like, we have to think about those unique questions and situations in order to come up with a better plan.

The bedrock of all of this is going to be prevention and finding something effectively. And sometimes it isn’t just one thing. Sometimes it is a handful of effective, preventive options. Usually, when you’re at a stage like this, it will take some time for a preventive medication to be noticeably effective. Sometimes, even after that first follow-up, you might say, well, I’m not worse. Sometimes that’s actually progress. Okay, we’ve stopped you from getting worse, and now here is how we start to get better. I think a lot of it is expectation setting in that what should you feel like? Almost never will it be like a true reset, where very quickly, very suddenly, everything is different. 

A lot of times, the changes in your life will be very subtle, and things that you only realize retrospectively. A week later, you’re, like, oh my gosh, I actually did that thing that I hadn’t done, and I didn’t think twice about it. That’s, oftentimes, what it looks like. And I talked about prevention, but it’s very important, if we can, to get you out of the severe exacerbations too. We talked about how more migraine begets more migraine. And once you’re able to kind of slow down that momentum, you can have the exact opposite effect, where fewer migraine becomes less migraine, becomes you having a better baseline, less severe attacks. It’s a process, and it’s an unwinding.

O’Brien: That’s a really good way to put it. I keep saying that, but you’re good at this. I like that visual of it’s unwinding. Because even with myself, I’ve noticed progression of these symptoms and sensitivities getting a lot worse just over the past year. And you don’t really notice it as it’s happening until you’re like, wow, I’m in this spot where every glare of light off everything is not good. So that like tight ball, and we need to unwind it. So that’s a good visual process. And you’re not just going to bling the string, and it’s all better. It’s a process. So I appreciate that. 

Do you recommend if people – this is a little bit off topic or off script – do you recommend, when people are talking, if they have a headache specialist, that they bring up these sensitivities and if they have a problem with them, early in the conversation? We’re only so limited with the time we have with our doctors. Is that an important step that maybe we’re just missing during appointments? 

Dr. Berk: Sometimes it is. I think it’s very important for the headache specialist to have a good sense of what you look like on a day-to-day basis. How are things when you wake up in the morning? What is your typical routine like? What are things that you feel like you have to avoid doing? What are things that you don’t even realize that you’re avoiding, and sometimes that comes up as part of the discussion. As a headache specialist, most of the information that we get is based on your history. Very little of it is based on the actual neurological exam. A lot of it is to reassure ourselves that there isn’t something secondarily going on. And even with imaging, most of the time it’s for us to be absolutely certain that what’s happening is migraine and nothing else. 

So the history is so key. And absolutely painting the picture of what a boring day is like. What is that, like, vanilla day, where it’s not the worst day of the week, it’s not the best day of the week, it’s just a regular day. What’s your humdrum life like?

O’Brien: That’s excellent. And again, the history part of it is so important. So I appreciate that. I know we just have a couple minutes left, so I want to ask you two kind of follow-up questions. What can we do on the patient side of things so people out there that are experiencing these sensitivities that can be very bothersome and disruptive to regular life. So on the patient side of things, are there any lifestyle type changes that we can make to help with these sensitivities?

Dr. Berk: We talked a little bit about, specifically, if it’s a light situation, ways, potentially, of avoiding the specific kinds of light that are most bothersome. I do think that sensitivities, in general, are changes that you are sensitive to. So being very cognizant of what your day is like and trying to keep specific things as routine as possible. So for the most part, having a regular bedtime, a regular wake time, for many people, even sleeping in can be a trigger, which is annoying, but it actually is something where your brain is like, hey, that’s just different. I don’t like different. 

Sometimes, for instance, if weather is a trigger, it’s even worth discussing that with your headache specialist, and they may give you a plan to take before the weather actually starts to trigger an attack. There are sometimes some options of acute medications, kind of like a mini prophylaxis that some headache specialists might give before your menstrual period, for instance. So sometimes that can be an option. We talked with regards to routine, even about when you’re going to have your meals pretty much about the same time, keeping your hydration status pretty much equal, as much as possible, understanding that your brain thrives on predictability and being that boring, predictable person.

O’Brien: Not bad to be predictable. It’s good, especially in the world of migraine. And one last follow-up question. It can be difficult, when you are living with these sensitivities with migraine, to go out into the world, to have relationships, to interact with people, go to parties, or go into other people’s homes, where maybe there are a lot of different smells happening, or maybe someone has a drum set. There’s a lot of different sensitivities. Do you have any suggestions for how maybe friends or family members can really be supportive or understanding, for those of us who live with migraine with sensitivities?

Dr. Berk: I think it’s really important, sometimes, to pick and choose who you actually open up to about this because, I would say, most of us understand that there are some people – not to use a pun – that are more sensitive to this kind of issue than others. Some people are just more understanding. And having somebody that can help advocate for you, a lot of times, is really, really helpful. So also, the burden shouldn’t feel like it’s on you to be the sound police, to be the light police. You want there to be a team of people, a handful of mutual friends that can say, like, hey, this person’s not doing so well. Maybe they’re going to have to leave a little early, or, you know what, while they’re here, maybe we’ll just be cognizant of the fact that they’re a little bit more sensitive to this or that. 

Sometimes even telling the person that’s hosting it, I don’t know if you can sensitively message everyone that’s coming and telling them, hey, we’re going to have some people that are very sensitive to smells. Can you try not to use very strong smelling perfume or other kinds of scents? And oftentimes that’s very helpful. So getting other people that you think are more understanding of what your needs are, I think that can be really, really helpful.

O’Brien: So beneficial. And this was such an informative conversation. I know you’ve got to run, Dr. Berk, but I want to give you a last opportunity before you go. Is there anything else you would like people with migraine to know about migraine and sensitivity?

Dr. Berk: I think it’s really important to strike a balance. And if you’re starting to notice that you’re more sensitive to things, to actually acknowledge that, to be cognizant of it, and to try, as much as you can, especially with a headache specialist, to come up with a plan where you are not becoming more and more limited with regards to your surroundings, where you are not becoming as avoidant of things that might secondarily or even further trigger what your symptoms might be. So you may have a sensitivity, and sometimes there’s legitimate fear that that sensitivity could make things even worse, and then you try to avoid things that are even somewhat removed from what that sensitivity is.

Being on good, effective, preventive treatments are oftentimes what could eventually allow you to get to that place where you hopefully aren’t avoiding anything. But sometimes, if you have been extremely limited, or having to kind of fight this battle on a few different fronts, and it does become that much more difficult.

O’Brien: Wonderful. Well, Dr. Berk, thank you so much for your time today and all of this information and insight. So well said. So glad I got a chance to talk to you today, and you got to share your knowledge with our viewers. 

Dr. Berk: Thank you. 

O’Brien: Thanks, again, for joining us, everyone. This is Spotlight On Migraine. I’m Molly O’Brien. We’ll see you next time.

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*This content was produced with financial support from Neura Health and is intended for educational purposes only. It does not constitute an endorsement by the Association of Migraine Disorders for Neura Health’s services.

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*The contents of this podcast are intended for general informational purposes only and does not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. AMD and the speaker do not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.