Molly O'Brien: Hello and good evening, everyone. My name is Molly O'Brien with the Association of Migraine Disorders, and we really appreciate you joining us tonight as we discuss migraine in children. Migraine is the most common type of headache disorder in kids, affecting about 11% of children. Migraine is also a leading cause of disability, and it can significantly impact a child's life. So tonight, we hope to help you get a better understanding of treatments and resources available to help kids living with migraine. This new, medically reviewed resource covers migraine symptoms in children, causes and triggers, diagnosis, treatment options, and much more, and we really do encourage you to check it out. You can visit migrainedisorders.org.
And in this webinar, you'll be hearing from Dr. Deanna Duggan, a pediatric nurse practitioner and from Migraine at School, an organization devoted solely to providing migraine resources for children and their caregivers. Following the presentations this evening, we'll have a brief question-and-answer period. So tonight's webinar is sponsored in part by Theranica. The company's flagship wearable device is called the Nerivio. Nerivio is a drug-free, FDA-cleared, wearable migraine treatment device for people aged 12 and up. It uses remote electrical neuromodulation to treat and or prevent migraine attacks. And we're going to go ahead and get started here in just a moment.
Before I introduce our guests this evening, we do have a brief disclaimer, and I have to read it verbatim, so bear with me here. This webinar is 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 healthcare provider with any questions you may have regarding a medical condition. The speakers do not recommend or endorse any treatment, products, procedures, or other information mentioned. Reliance on any information provided in this webinar is at your own risk.
That being said, tonight I'd like to welcome our first guest, Dr. Deanna Duggan. Deanna is a pediatric nurse practitioner and headache specialist with 18 years of experience in child neurology. Dr. Duggan completed her graduate in pediatric nursing studies at Wright State University in 2002. She earned a Doctor of Nursing Practice, in 2019, at Texas Woman's University. Dr. Duggan aims to educate children, adolescents, and their families about their neurological condition and plan comprehensive treatment options that may improve their quality of life. She strives to thoroughly address medical and behavioral factors that impact the health of her patients, and she has been recognized and rewarded for excellent clinical care at Texas Children's Hospital.
Dr. Duggan is an active participant in state and national professional organizations, where she has served on several committees, including as the past president of the Houston Area Chapter of the National Association of Pediatric Nurse Practitioners. Dr. Duggan, it's all yours.
Deanna Duggan, DNP, APRN, CPNP-PC, PMHS: Thank you. And I am grateful for the opportunity to speak with you all tonight and hopefully answer your questions and give you some information. And I am a member of a growing Headache Clinic at Texas Children's Hospital. And I'm also pleased to say that headache as a specialty is also growing amongst physicians, nurse practitioners, and physician's assistants. So we're all trying to work together to get the word out to get up-to-date information and treatments disseminated amongst all kids and teenagers that struggle with headaches. As mentioned previously by Molly, this presentation is sponsored in part by Theranica.
And we'll briefly go over a few key points tonight. First, what is migraine? Also, factors to think about before you start a new treatment targeting migraines. There's different treatment options. There's what we call acute treatments. So what can you do, in the event that there's a migraine attack or a headache that develops, on an as-needed basis? Then there's also preventive treatments. So sometimes when headaches get really quite frequent or what we call chronic, we pivot to, well, we need to consider other daily strategies to try to reduce the frequency of headaches and help, hopefully, also the intensity overall to help kids have a better quality of life.
So to start, what is migraine? So, in kids, especially younger kids, there are times where it's difficult for them to describe what exactly they're feeling. So there are a lot of situations where we have to look at their behavior or what they're doing to try to piece together what's happening. What we do know and what is classified, and there is an actual classification internationally accepted and developed by researchers, headache specialists, physicians, and other healthcare providers to make sure that we're consistent across the board. So in other words, a child in Japan, or a child in the United States, or a child in the UK, with consistent headache characteristics, all meet the same criteria for headache. And the reason for this is we want to really be accurate in our diagnosis and make sure that the kids are getting the right treatment.
So, attacks for migraines in kids can last anywhere from 2 to 72 hours. And that sounds like a broad range, and it is. But what we have to also think about, too, is a lot of times, especially with younger kids, even with some of us older adults, is we don't always say, oh, I have a headache. Because if it starts is a milder headache, usually we don't change our activity. We keep pushing through. But only when that headache intensifies or progresses to a point where it becomes bothersome, that's when you'd be dialed back. And that's typically when you'll see kids stop their play activity, schoolwork, or whatever they're doing or even sport and say, I can't do this, my head hurts, and they want to sit down or lay down and rest.
But typically, categorically, to meet the criteria for migraine, from start to finish, the headache itself, not just the peak severity, it just needs to last 2 hours long for us to say, yes, it meets criteria for migraine. And also, location of the pain. So for a lot of younger kids, even sometimes through teenage years, the pain is typically towards the front of the head. And if you ask kids, where does your head hurt the most when your headache starts or point to the spot where you have the headache, usually they'll point to the middle part of their forehead, but it can also be distributed anywhere along the front part of the head. As kids get older, especially towards the teenage years and adolescence, sometimes the migraines can evolve to be more of a classic adult-type migraine, where the pain can be more one-sided, or both sides, and it can switch sides.
And the pain is quite severe. It's really heartbreaking when I hear my patients tell me, the pain is so bad to where they just cry. You know it's really bad if they cry. As far as characteristics of the pain, what does it feel like? When kids can describe what the pain feels like oftentimes migraine pain is characterized by feeling as a throbbing or pounding. Sometimes words they'll use might be it feels like a hammer is hitting me in the head, or I'm getting punched in the head. It's a very intense pain. There's also other characteristics kids may describe, even sharp pain, but typically it's more severe. So another characteristic of migraines that we see, I mentioned earlier, is the pain can progress and kind of evolve to become from a mild or to moderate to more severe headache to where they stop their activity.
Another characteristic of migraine is that just any routine physical activity can make the headache feel worse. For example, even if it's not a severe migraine attack, think about a pain scale of 0 to 10, 0 being no pain, and 10 being the worst pain ever. And sometimes we all walk around with a headache that's maybe a 4, 5, or 6. But once it gets to a certain point, and we all have different tolerances of pain, and we all have our past pain experiences, but when it gets to a certain point to where it's really bothersome to us even just climbing a flight of stairs or walking down the hallway at school can just make the headache feel even more intense. So that's usually a question that a neurologist, even primary care doctor, or headache specialist will ask, does that make it hurt worse? Specifically, even PE. That's usually when kids are like, nope, can't do it. They'll try, but the headache just gets more and more excruciating.
So other associated symptoms that can happen with the headache, and these are the most common: First is nausea and/or vomiting. And you don't have to have vomiting for it to be a migraine. It can be nausea. And some kids really have a hard time when you tell them nausea, and it is a medical term, they don't know what that is. What you sometimes might see is they have a decreased appetite, and they really don't want to eat. It's really not until they get to an old enough age to understand what nausea is. Like, do you feel that feeling like you want to throw up but you're not throwing up? So unfortunately, that is one of the most common associated symptoms that kids and adults alike experience with a migraine attack. With nausea alone, together with the location of the pain, how the pain feels, and how severe it is, right there, that meets criteria for migraine.
So without nausea, other associated characteristics will include sensitivity to light and noise. This is when you see the kids not just stop what they're doing, but they lay down and rest, and they seem to prefer going to a dark, quiet room. Sometimes they'll pull the covers over their head, or they'll get a little bit irritable at siblings or any other family members that are being loud. They'll say, shhh, leave me alone, I need quiet, I need dark. And so that alludes to us that they've got the light and sound sensitivity that are also known to be characteristics of migraine. It is more rare, only 1 out of 4 individuals that experience migraines will have an aura – spelled a-u-r-a – and the most common aura is a visual change that can happen either before the headache starts or during the headache itself. Some kids that experience that can feel frightened because they don't know what it is. But we always encourage them to just explain what it is and tell your parents and they can tell us, and we can try to help you feel reassured that we know exactly what headache type this is.
Most importantly, as kids grow, their bodies change. So do their brains. Hormone changes. All of these factors combined make the headaches almost a moving target, so to speak. So we expect their migraines to change in these characteristics as they grow and as they become older. So the type of migraine a 6-year-old may have is they get to where they're 9, 10, 11, 12, especially approaching puberty, it can really change a lot. So that's why it's important. And we recommend following up with the providers to keep track of what's going on with their headaches. So as far as, okay, where do we go from here? If we feel confident and you've got confirmation and the assigned diagnosis of migraine from a healthcare provider for your child, where do we go from here? Do we want to think about including medications, which is pharmacological or nonpharmacological options?
And typically, we recommend considering both. And also, we want to individualize. Every child is different. Every situation is different, as far as their surroundings or environment, lifestyle habits, activity level. So every child deserves to have a treatment plan recommended based on what's going on in their life and what may be more helpful for them. The goal is, at least what I recommend with my patients, is what we really want to strive for is seeing kids and teenagers experience the least amount of headaches with the least amount of medication and have them feel as healthy as possible. Now, that being said, there are some adolescents and kids who have other health problems to where the medicine really helps them with their quality of life. It helps them attend school. So medications aren't necessarily bad. It's just that sometimes we think about what would be the best thing for their overall health and trying to reduce side effects and any kind of long-term issues that we may not be aware of?
So from there, we say, what options do we have available to us? And what's research tell us that is effective and safe for children and adolescents? There's research that's done by pharmaceutical companies for them to get FDA approval for treatment in children. And unfortunately, in general, as far as medications that have FDA approval for use in kids, they're very few and far between. And that's for a lot of other ethical reasons. But going forward, there is a push for more pharmaceutical companies to try to pursue getting more information so that we can be sure that what we're prescribing for our kids is safe and effective.
So sometimes, we use medications that aren’t FDA approved for use for kids because they've tried what's FDA approved, and it hasn't been helpful for them. And we, by golly, need to do something because they're in pain. So we refer to those treatments as off-label, meaning, it's medications that are considered most likely standard of care, and they're used widely, usually worldwide by pediatric neurologists and pediatricians to manage their migraines, but just may not be FDA approved. So there's also as far as treatments that are not FDA approved, if they're not drug, they can be FDA authorized, as we'll mention with some of the devices later on. And we'll also mention and describe and let you know which medications, devices, and other treatments, at what age that they have either approval or authorization for.
So other factors to consider also is what treatment is going to give us the quickest results? What treatments may be more long term? It may take several weeks before we can really notice a difference or a benefit. What are the side effects? Are there any interactions with other treatments? Also, cost. That's huge, especially as we consider off-label treatments, most insurance or pharmacy-benefit companies will refuse or ask us to make appeals for treatments that are not FDA approved, unfortunately. But then also, what's best for the child and where they're at? What's easiest for them to take, whether they're at school, at summer camp, after school, visiting other families, friends. So we'll take those into consideration as well.
So going on to acute treatments. This is really the first crucial point. We really need, and there's been a lot of development for, effective treatments that help stop a migraine attack. And over the years, especially thinking about the last 30 years, there's been a lot of progress, but we're still not quite there. We're getting there, as far as what medications have FDA approval for use in kids or treatments, and does it work well, does it cause side effects, and is it something that is accessible as far as cost? So starting off with what can we do initially to stop the attack? If we don't stop a migraine attack and it goes on, sometimes, unfortunately, migraines can go on for days, weeks. Unfortunately, there's some kids and teenagers who experience a migraine that's constant, daily, and unremitting that can go on for months or years. That's worst-case scenario. But we really know that this is what is most important.
If we can find something that works well to stop the migraine soon after it begins, then we have a better chance of keeping them under control. And also, who wouldn't have anxiety, even kids, thinking, oh, no, here comes another migraine. What's going to happen? How long is it going to last? Do I have a medication that's going to work well to stop it? So there's a lot of reasons why we really want to pursue finding a good, effective treatment at the first sign of an attack. So with that being said, the caveat is a lot of over-the-counter treatments, such as ibuprofen, naproxen…these are NSAIDs…even Tylenol, which is acetaminophen, if they're given too much, whether you're a child or an adult, more than 2 or 3 times a week, sometimes that can make the pain worse, makes the headaches harder to control. It's also referred to as rebound headache.
And so sometimes the medicine itself can do more harm than good if it's given too frequently for an extended amount of time. So we have to be aware of that and be cautious of it. We like to see, also, if possible, keeping a headache diary. Sometimes it's hard to say…there are some individuals who, when they have migraines, they can tell you, I usually get about 4 to 6 migraines a month. But there's also fluctuation. Migraines can roller coaster just like life. So there may be weeks where it's just bad. Maybe you've had 4 days that week with a migraine, either separately or all mashed up into the same headache. But then after that, 6 weeks, or 7 weeks in a row without a headache at all. So based on that kind of information, it's really important if that's in a diary for your provider to be able to look at that and say, okay, well let's try to target and find a treatment is going to work best for you in these situations.
In addition to acute treatments to stop the migraine itself, there's also commonly prescribed anti-migraine medication. It's like anti-nausea medicines. Because nausea is such a big component of migraine, the nausea itself can be just really uncomfortable and bothersome, especially thinking about kids at school. So that's commonly prescribed. So I mentioned over-the-counter treatments, briefly, and listed on this slide is the ages that there is FDA approval for their use. And as I mentioned, we have to be careful of use of these medications for the long term because of side effects. And prescribed anti-migraine medicines that actually target migraines we call triptans. And there's several of these medications that are available, but the ones listed on this slide do have FDA approval for use in kids.
Rizatriptan is the one that's FDA approved for the youngest age, which is 6 years of age and older, and it comes available in either dissolvable tablet or a tablet that is swallowed hole. There are some, also, nasal sprays that are available. And so we try to find what works well, especially if you can give these medications soon after the migraine starts, it has a better chance to work well. If a migraine has already been going on and it's raging and severe for several hours, you can still try the triptan, but it won't work as well as if you had given it towards the beginning of the migraine attack. Side effects can vary. And typically with rizatriptan, almotriptan, zolmitriptan, and the ones that are listed, they're usually fairly well tolerated. Everybody's different, though. And so I value and ask patients, just let us know. If it makes you feel yucky, tell us, and we'll try something different.
Insurance, as far as pharmacy-benefit coverage, typically will cover triptans. Although, sometimes, depending on their plan and what's on their formulary, they may be selective on what they'll cover. And so sometimes we have to do a little bit of back-and-forth to find which one isn't cost-prohibitive.
Now, going into what's not medication? What is the most new development within the migraine treatment realm is neuromodulation. So without drug, are there ways that we can use stimulation externally from the body to travel to either the brainstem area or vagus nerve area to stop the pain that way, without medications? And we've got Nerivio, gammaCore, and the SAVI Dual. These three devices do have FDA authorization for use in kids that have migraines. And all three of these devices can be used acutely, meaning on demand, or just when you have a headache, or together with as a preventive, every other day or daily to try to help prevent and keep the migraine attacks under control. So with preventive treatments, our strategy is, can we try something to keep the migraines not just under control, but can we decrease them? Not just decrease their frequency but decrease their severity?
Typically, what we see with a lot of preventive treatments is first the migraines themselves usually become less intense, and then over time, they may also become less frequent. And that's what we strive to hear. That makes us think, okay, we're going in the right direction. Unfortunately, for most preventive treatments, there's really not a slam-dunk guarantee of eliminating migraines altogether. Migraines are a chronic disorder. Once the brain has its first migraine attack, there's a pain memory that's there that can always come back even years later. Unfortunately, we don't have a way to rewind and erase the pain experience. So thinking of what our strategy is, is more to keep them under control as much as possible to help improve the kids’ lives. But typically, preventive treatments need to be tried anywhere from 8 to 12 weeks to really give it a fair chance to see if it's helpful or not.
So sometimes they're a success, and you'll see results a lot sooner. But typically, we say we really need to give it at least a couple of months to give it a good assessment. On top of treatments, we need to think about, apart from medications and neuromodulation, what's really important is also lifestyle habits, making sure kids have enough sleep. This time of year is really challenging with the end of the school year for adolescents. They have final exams. Inadequate sleep or an irregular sleep pattern is a definite…it's a well-known migraine trigger. And we can't help headaches get better if their kids aren't getting enough sleep. So that's really a crucial component to try to address.
Also, looking at balanced diet and hydration, there are a lot of foods that are known to be common triggers but, again, everybody's body is different. What's more important is trying to make sure that they've got a balance of fruits and vegetables, lots of water, regular exercise…as tolerated, doesn't have to be strenuous…and also stress management. And in my experience, stress combined with not enough sleep are the two most powerful triggers out there. It creates the perfect storm. And it's usually not just one trigger, and there's been research done on this. It's not just one trigger. It's when you have two or three triggers combined, it simultaneously is when their migraines really flare up. So the benefit of these lifestyle changes is you're taking best holistic steps to try to help improve your child's overall health but also reduce their migraines.
Another important feature, briefly I'll touch on, cognitive behavioral therapy. So pain in our brain, especially thinking about our nervous system. It's a very complex system that's not, even now, clearly 100% understood. The more I think we learn about the nervous system, our brain, especially the more I think we don't know, and the complexity of a pain experience can really hinge on a lot of things. Any kind of past traumatic experiences, medical trauma, like any kind of pain, a fracture in a bone, or any kind of experience that's very stressful, research shows can kind of fuel the fire, so to speak, if you have a chronic pain disorder. So medication alone, sometimes in situations where migraines and other headache disorders are really, really intense, may not work as well when you combine cognitive behavioral therapy, which use ways to try to reprogram or retrain the way our brain thinks in response to triggers. Combined is when we usually see the best results.
So cognitive behavioral therapy is often recommended by a lot of headache clinics and programs to where we use psychologists. And this doesn't imply that the migraines are psychological. They're not. Migraines are a truly…we know there's neurotransmitters involved. It's a neurological issue, but we know that there's different emotional triggers that can exacerbate a headache. So we really want to get good control of both. The best thing about cognitive behavioral therapy is it's not drug, and it can benefit you once you learn how to implement this and practice this in life. Like, for example, even with mindfulness techniques, it can benefit you all through adulthood. And it helps kids learn better coping skills when they're facing stressors throughout life.
So quickly touching on the Nerivio, going back to the neuromodulators. This device has really been a bit of a game changer as far as when we think about kids who are getting frequent migraines. But families, understandably, are leery about starting a daily preventive medication. We think, is there another strategy? What can we use besides medication? This is a device where it's worn on the upper arm, it's programmed by an app on your cell phone. It lasts 45 minutes. There's no needle. It's a little bit of a tingling sensation but not painful, and the intensity can be adjusted. There is a recommended range to kind of dial the intensity to, to help it be effective, but it can stop a migraine after it started, but it can also be used as a preventive treatment every other day. The research is really promising. And it's shown, thus far, to be just as helpful as a lot of migraine target medications that are FDA approved for use for kids.
So the only contraindications for this device are kids that have an implanted device for uncontrolled epilepsy. And we've developed notes for school that say…for specifically for the nurse, for teachers, for the school staff to understand that this patient has been diagnosed with a migraine disorder, and they've been prescribed this device to help stop their migraine attacks so that hopefully their migraines stop, and they can stay at school. And it explains how it's used so that that way there's hopefully less interruptions and less concerns. And it kind of clears up any concerns that some of the teachers and school nurses may have.
I say we, as providers…a lot of us headache specialists have been behind the movement to try to get these neural modulating devices covered by insurance. Sometimes insurance will cover them, sometimes they won't. And I think mostly because any newer treatments, sometimes it takes a while for them to gain momentum. And we're trying to spread the knowledge that, look, we've got other options besides medications. If insurance will cover the medications, why won't they cover the devices. So we've got a grass movement kind of going, so to speak, with trying to get this device and other devices approved by insurance.
Another device that is an option is the gammaCore, which is a noninvasive vagus nerve stimulator. And this device is held up to the neck, where the vagus nerve is, to try to externally stimulate that vagus nerve to stop the migraine attack. This device is also used both as what we call acute treatment and prevention. And it's only 2 minutes. The only side effects are…and I've actually tried this, I've demoed it myself…is there is a slight, it's not painful, but a slight muscle kind of pulling sensation you feel right around your face and your neck. And then as soon as the treatment stops, it subsides. But we always want to tell kids about that beforehand so that they're not surprised.
So the cost is a little bit more than…quite a bit more, actually, than the Nerivio, but for some families and for some patients, it's been very, very helpful. Again, we're working with trying to get insurance to cover these. The gammaCore does not require a smartphone to use the device. And the SAVI Dual, the last but not least, this is a transmagnetic nerve stimulator. So it works with a single-pulse treatment. Historically, a similar type of mechanism was created for use for other different neurological disorders. And they found out, you know what – this was probably about 15 years ago – maybe this will work for migraine. And they've since developed this transcranial magnetic stimulation to be in a smaller device. Initially, it was used (33:21) in larger machines where they had to be installed in a doctor's office, where you had to make an appointment to kind of go sit in this chair.
So the benefit of this device is it is handheld, and it's held behind the head for just a few seconds. And there's a couple of pulses. You push a button, there's a pulse, and then you wait 15 minutes, and you can repeat. And this is also used either acutely at the beginning of a migraine attack or preventive. So this is, again, with all these devices, as mentioned, they do have FDA authorization for use in kids 12 years of age and older. This device is the most costly as far as it's a rental. You don't own the device, but you have unlimited treatments on the device for every month that it is rented. So, again, doesn't require a smartphone to use the device. There is a cable that you use to plug in to charge it up so that it doesn't lose power.
Finally, talking about kind of going back to medications. The one FDA-approved medication that's used to treat chronic migraines in kids, in fact, the only chronic migraine treatment as far as a medication that's approved for kids…and its teenagers, really, adolescents 12 years and older…is topiramate. It was initially developed as a drug to help control seizures, but they found out that how it works is also helpful for chronic migraine treatment. So, at very low doses, it's used to manage chronic migraine. There's common side effects with topiramate. First off, the most common side effect that I've heard patients explain to me is decreased appetite. Also, sometimes weight loss, forgetfulness. There's also sometimes tingling sensation that kids, adults too, may feel to their fingers and toes. It's not a harmful side effect. It can be kind of annoying. But again, we like to let kids know ahead of time so that they're not surprised about it.
If it gets bothersome enough, there's times that we will say, well, it's just a side effect that's not going to be tolerated, and we'll come off the medicine. It is contraindicated during pregnancy, so it has to be used in caution with females of childbearing age. But it can be very helpful. There are some that really have a significant reduction in their frequency and severity of their migraines while they're taking it, and it can be helpful for them to stay in school, still participate in any extracurricular activities. The cost – it's typically covered by most insurance; however, the caveat is there's extended release and immediate release. Extended release, usually the side effects are a lot less noticeable, and you only have to take it once a day. Whereas, if insurance won't cover extended release, the immediate release is dosed twice a day, and that's usually when we'll notice the side effects a lot more.
Pericranial nerve blocks. These can be helpful for kids that have not just migraines but other headache types too that may kind of be intertwined into those. They can work immediately. However, there's a bit of procedural anxiety, which is understood. It's needles, and we're giving anesthetic which is like a lidocaine or a longer-acting lidocaine under the skin. And it's not a pleasant sensation when the medication goes under the skin. Similar to if you go to the dentist and they numb your mouth. Now, about 10 minutes after, sometimes the pain is gone, and they don't feel the pain, but it's temporary. It will wear off. But it can really be helpful to help stop a migraine, specifically, a migraine that's been going on for several days and other medications haven't worked. And sometimes these can be used as acute or preventive options.
Most headache specialists are skilled and trained to administer these nerve blocks, and they're relatively inexpensive. Typically, insurance will cover these also. And they're pretty quick. It's fast. It doesn't take long to do them. But probably especially thinking about children and adolescents, the number one barrier is the fear of needles, and that's understood.
So, with regard to other daily preventive treatments, these are considered off-label, meaning they don't have FDA approval for use in children. However, they're considered standard of care because for years, before we had really any other specific migraine-targeted treatments, this was all we had. And so there's various different types of drugs maybe developed for other neurologic purposes that are now also used to try to help manage migraines. On the bottom, onabotulinumtoxinA is Botox. That can be very beneficial. Usually that's reserved for migraines that haven't responded well to medications, also, or you need a neuromodulating device.
There's a newer class of medications that are migraine-targeted. But unfortunately, a lot of times that's cost prohibitive. Insurance typically doesn't cover those because they're not FDA approved. And then also nutraceuticals. So magnesium, riboflavin, which is vitamin B2, has been studied in children and adults that have migraines, and that can be beneficial as a daily preventive. So there are options out there. And please don't lose hope. If you think, I've tried everything, nothing works, I encourage you to say, no, maybe we should go see a headache specialist. There's got to be something else we can try. What are we missing? And maybe we need to think a little bit outside the box. Please be an advocate for your kids. And this is the link to our Migraine in Children page. Thank you very much for your time, and I hope that this has been informational for you.
O'Brien: Dr. Duggan, thank you so much for this presentation. I think it's so valuable, and I'm so glad that you mentioned, here at the end, that continue advocating for your kids and keep pushing because there are more and more researches available. I remember when I was 4 years old and laying in a dark room with a migraine attack, my mom would not give up. So thank you for what you are doing, and thanks to all the caregivers out there who are here on behalf of a kid they know with migraine. So we really appreciate you. And we do have some questions in our Q&A box. I'd like to remind you that to all of our viewers out there, if you do have any questions, you can pop them over into our question-and-answer box, and we will address them at the end of the presentations.
I'm going to go ahead and introduce our next speaker. I'd like to introduce Amy Graham. Amy is the executive director of Migraine at School. Amy has a wealth of experience in nonprofit leadership, with a focus on grassroots organizing and program development. She was recognized for her work at LiveFEED where she addressed childhood hunger through music community, receiving the Washington University Social Entrepreneurship and Innovation Award. Amy has also served as the national program director for the Coalition of Headache and Migraine Patients and currently leads as the executive director for Migraine at School, driven by her personal experience with migraine, to ensure every child has a chance to succeed. I am going to turn it over to you, Amy. Take it away.
Amy Graham: Thank you so much. I am so happy to be here. And, Dr. Duggan, thank you for that amazing lesson in all the ways that we can both recognize and treat pediatric migraine. It’s so informative. So thank you so much for being here this evening. We are excited to be working with AMD. Migraine can be so overwhelming when you're trying to navigate this with your kiddos, and that is why Migraine at School exists. We are the foundational initiative of the Danielle Byron Henry Migraine Foundation. This foundation was formed, in 2016, in honor of Danielle, who lost her life to migraine in 1999 at the age of 17. You can learn more about the Danielle Foundation at daniellefoundation.org.
One of the things that we do at Migraine at School is we try to provide just an array of resources for a multitude of audiences, and one of those audiences is the parents, which I'm assuming that most of you here this evening are parents or guardians of a child that is living with migraine disease. We have an infographic specific to you, a little bit about what migraine is, how to take it seriously, what you need to do if you suspect your child has migraine. It kind of goes through the steps. Again, we went over a lot of this during this presentation. As Dr. Duggan so fortunately said, please advocate for your kiddos. It's so important because many of them can't really speak for themselves. And you have a lot of power when you're in that doctor's office. If you're lucky enough to be in an office with a headache specialist like Dr. Duggan, that's amazing. And we also understand that many of you are just talking to your pediatrician. And the fact is, is that after this webinar, you are probably going to be more educated on migraine than your pediatrician is. So trust that you know what's best for your kiddo.
Depending on the severity of the migraine, you may need a little bit more help from your school. And that may mean getting a healthcare plan or a 504 plan. And so one of the things that we have in our parent infographic is just a list of possible accommodations. Whether I'm working with a parent one on one, or whether I'm talking to a group, I like to say this is just a starter list. These are our ideas. If you don't see what you need on this list, please ask for what you know your child needs. And if there's something on this list that doesn't make sense, then you wouldn't ask for that accommodation. But this is a way to sort of get you started on what you think you may need for your child. One of the things that we provide to schools and parents can use is that you can actually screen, we have a screener on our website, but then we have this supplemental resource, which can help have the conversation that you need to have with your pediatrician.
Again, that time is short. You only have a little bit of time. And this can sort of help you have the conversation you need, get the diagnosis you need, and start the treatments that you need. I mentioned a 504 healthcare plan. Almost everything needs to start with a letter from your doctor. We have a letter on our website, you can easily download it, you fill in a name, you have your doctor sign it, so that you can start having that conversation with your school. Just like you're going to advocate at the doctor's office, you need to be advocating at the school too, especially if your child needs maybe a chance to sit in a dim room, or they need to wear their sunglasses in class, or they need to always have a water bottle on them. These are things that legally that you have the right to ask for.
Depending on the severity of the migraine, we do have information on 504 or IEP plans. We both have sample 504 plans and a sample IEP plan on our website, which again, available for you to download. We are also always there to help answer questions. So you can always reach out to us. Along with parents, we have tools specifically designed for students. The infographic for students sort of starts with, like, do you have migraine? And thinking of those other symptoms that I know Dr. Duggan mentioned that it's not just necessarily head pain or just the stomach pain, but there are other things that come along with migraine disorder.
And so helping students recognize that like, oh, you know, every time I get a headache, I'm really sensitive to light. It's probably migraine. Helping kids understand all the lifestyle choices that they can make that may help manage their pain, again, was mentioned sort of almost like trigger stacking. Some of these lifestyle changes are removing those triggers that may be bringing an attack on. Again, if you have migraine, you have migraine, but what can we do to help manage the pain that comes along with the disorder? And then we also love to encourage kids to advocate for themselves, even though we want you to advocate for them.
But we want children to speak up. Their pain is real, and their voice should be heard. If they're not feeling well, we want them to feel empowered to say something to somebody, whether it is talking to their teachers, going in and talking to the school nurse, talking to the school counselor, to speak up about what it is that they're experiencing. All of these resources and so many more resources are on our website. So please visit the website. There's a ton of information on there. Obviously, you can also reach out to us, and we are happy to help, which if you use this QR code, you can go directly to our parent page, which is a great place to start if you are a parent or guardian of a child living with migraine. This is where I would tell you to start. So again, we are just so thankful that we were able to be here this evening. We just really love collaborating with AMD, and really a pleasure to be on the same stage with Dr. Duggan this evening.
O'Brien: Amy, thank you so much for that presentation. And I highly encourage all of you to check out Migraine at School. Such an incredible organization. And you know, one thing I loved learning about this and getting familiar with 504 plan, is something so simple is just access to water and access to go to the bathroom. I mean, it's just so simple and so, so effective and can really be really monumental in a child's life. So we really appreciate all of the resources that you have and both for being here. So thank you for sharing that.
All right, everyone, I wanted to give a quick shout-out that we are also simultaneously casting our webinar tonight on Facebook. So shout-out to our friends watching over on Facebook. And again, a big thank you to all of our participants and attendees tonight. We're going to switch over into our question-and-answer mode. So we have a few questions that are already in the box lined up for us and another few that did not make it into the Q&A portion, but we will do our best to get to all of these. If you have questions that continue to pop up, feel free to jot them down in that question-and-answer box. And if for some reason we don't get to your questions, we'll do our best to answer them in a follow-up email when the webinar is over.
Okay, that being said, this one is for you, Dr. Duggan. One of our participants wants to know if any of the migraine devices can help with vestibular migraines or vestibular migraine symptoms.
Duggan: Good question. And there's actually two different questions with regard to vestibular migraine and dizziness. So, vestibular migraine is typically involving…we think about vertigo. And by definition, that is a sensation when you feel like you're standing still or you know you're standing still but it feels like the ground is moving underneath you, or the room is spinning, or both. Whereas lightheadedness is a sensation where you feel like I might faint. So we usually try to distinguish between the two. But this vertigo, dizziness, lightheadedness, all of those symptoms are also commonly associated with a migraine. We just touched on the most common, which was nausea, light/noise sensitivity, vomiting. There's a whole host of other symptoms. And it's all because everything meets together in the brainstem. So to answer your question, it may. It may help.
Now, if there's any kind of history of head trauma, or ear injury, or inner ear disorders, that may play a role. There's also some very talented ear, nose, and throat specialists who have an interest and a specialty in vestibular disorders. So a lot of times we'll collaborate with them. But to answer your question, it may help. I don't know if you want me to go to the next question or if you want to pick.
O’Brien: Yeah, I'll pop in there. And we do have quite a few resources on vestibular migraine, and vertigo, and dizziness symptoms over on our webpage at migrainedisorders.org. So anyone who's interested in those specific types of symptoms and learning more about vestibular migraine, you can also head over to our website and Kylie (51:49), who is awesome, will put a link in there to vestibular migraine if you want some more resources. So the next question was, what are the age ranges are the devices approved for? And it's my understanding that for prevention and for acute treatment, it's 12 and up. And then another person wants to know, is there any type of neuromodulation device for kids 12 and under, which for my knowledge is no, but maybe you can touch on why that is, Dr. Duggan.
Duggan: Well, it's typically the size of the child and the device. So I think that's probably the number one, is thinking about the physical factor, is sizing the devices to the size of the child. And then also trying to…is the dosing, meaning, like the intensity, the pulsations, does that need to be adjusted for a smaller-sized child? So 12 and up has been a little bit more easily studied, just because the size of a preteen or adolescent is just marginally maybe a little bit smaller than adult. I'm not aware of any ongoing studies, but I know there is an interest.
O'Brien: Wonderful. Thank you for that. And we have another question that asks to compare two of the devices, the Cefaly and the Nerivio. From my knowledge, there's no head-to-head studies. But maybe you can talk a little bit about benefits of either one because they do treat differently. And also some might have better benefits than others, just depending on who uses it.
Duggan: Cefaly does not have authorization for use in individuals younger than 18 years of age. I don't have a photo to show you, but it's about the size of about maybe 2 inches by an inch-and-a-half. And it's electrodes that are positioned to the center of your forehead. The Cefaly is a little bit more similar to a TENS unit, if you're familiar with that, where it's a little bit more of a local, where you feel a tingling sensation that can distract, so to speak, some of the pain from the brainstem. So it's a different type of pain modulation. There are, again, some individuals who really feel the Cefaly device works well, and they can feel instant improvement in their headache. And the risks are low. So there are certainly times that even off-label that I've had patients that are younger than 18 that have tried it. So it's kind of one of those things where sometimes it's a little bit of trial and error to try to figure out what works best for you.
O'Brien: That's very helpful. Thank you. This is a pretty interesting question because, I think, going along the lines of some of these devices stimulate the vagus nerve. So one person wanted to know if vagal toning could also help. So trying to activate and stimulate the vagus nerve system by doing things. Some of the things I looked up were like exercise. This person suggested singing, humming, gargling, and there could be even just exercise. Could those things also help in treating migraine?
Duggan: Potentially. I'm not aware of studies. However, what's interesting is those same exercises or practices, singing and humming, they're also really good mindfulness techniques. So whenever we're dealing with chronic pain or a flare-up of pain, it's a way to almost distract or cope. So I'm all for it. If it helps, great. Go for it. And the risks are low. Why not?
O'Brien: You know, that's a great point. And I was thinking that too, that a lot of these things are mindfulness, behavioral strategies that we can incorporate. So I think that's absolutely a great answer. I want to pop over to a question, kind of changing gears. This person said they were referred to a pediatric neurologist, and they are wondering if all neurologists are able to provide migraine care, or should parents and caregivers of kids with migraine look for a specific specialist that focuses pediatric neurologists with a headache specialist? I think I spit that out right.
Duggan: No, you did. So all pediatric neurologists are trained to diagnose and manage migraines and other, most, common headache disorders. And if their attempts don't seem to get you in to go in the right direction, they can refer you to a headache specialist. But definitely, headaches are the number one reason for referrals to neurologists in general. It's the number one most common neurologic disorder worldwide. So if you have access to a headache specialist, that would be wonderful if you can, but all pediatric neurologists are familiar with adequately diagnosing and managing. Hopefully, you find some answers.
O'Brien: Great, thank you for that. And for all of those who are participating, we do have quite a few links over in the chat box. If you want any more information on the stuff that we're talking about, we have links directly posted there. I do have a question about CGRP monoclonal antibodies. Can you talk about is there any…I know you mentioned them off-label, but do we know about safety or efficacy in younger patients? And has there been any studies? And have you perhaps yourself prescribed them for off-label for kids who haven't had any success with other types of migraine medications or treatment options?
Duggan: Yes. What I'm aware of and what I've been told is some of the CGRP antagonists are in the Phase 3 trial as far as getting the final step to get FDA approval for our indication for use in 12 years and older. I was told a year ago, at the last American Headache Society meeting, that it might be another couple of years before that happens. And it took the wind out of my sails because I really feel like this can't come soon enough. I mean, on one hand, we want to make sure that the medications are safe and effective. But on the other hand, on a day-to-day-basis, I see kids in clinic who I feel like this could be a wonderful option for them, and it may help improve their lives. So with that being said, yes, I have prescribed it off-label. For those patients who have been able to try it, it's not a guarantee. But there have been a number of patients who definitely say, oh, well, it's been really helpful.
So it's exciting that it's in the pipeline. I don't know what the update is on the timeline for that. But unfortunately, the number one obstacle is the cost. So because it's not FDA approved and it's still a brand name drug, a lot of pharmacy benefit companies will not cover it. And if you say, well, I'll pay cash. For 10 tablets, it's $1,500. And that's a month supply. That's really, really astronomically inaccessible for most people. And it's heartbreaking. So I'm really hoping that things will turn around and move forward for that sooner rather than later.
O'Brien: Wonderful, thank you for that. I want to pop a question over to Amy. And for those of you, we are going to continue the webinar for just a couple more minutes, just to make sure we can answer all of our questions. So if you need to go, feel free, but if you want to hang on, we will be wrapping up in a couple moments. We just have a few more questions to go. Amy, we got a question regarding options for kids. So a lot of times, now, schools are using computers, tablets, electronic devices for everything. Do you have any options that you can talk to about providing accommodations that a school might allow for kids who really need a break from screen time or they're just too sensitive overall?
Graham: Sure, I mean, there are a couple of things you can do that are going to directly impact your relationship with the screen. So whether you're using specific migraine glasses, or you can get some sort of blue light blocker that you put on your iPad or you put on your laptop. And depending on the severity of the migraine, you can ask for lessons to be provided outside of the computer so that they need to be printed out, kind of old school. If that is what your child needs, then that's what you need to ask for. Because screen time really can impact our migraine. The really hard thing is then to maybe even limit some of the screen time on other screens that are not then school related, which is tough because then we're sort of having that sort of relationship with the mindfulness piece. Because maybe sitting down and playing a video game is something that makes them happy and is good for their mindfulness and but that may not be good for the migraine.
O'Brien: That's such a great point. And I appreciate that. You know, go back to worksheets if you need to. Love a good work sheet.
Graham: Sometimes, yeah. Sometimes you’ve got to go old school. That will help.
O’Brien: I love a good worksheet. Also, you touched on a possible, migraine glasses. So those are FL-41 glasses. There's a whole host of those. But also, there are some apps that you can use for your computer as well as your phone tablet that help. I have all of these. That's why I'm mentioning it because they are so helpful. I have a bunch of them. So you can look into that to that kind of help with brightness, with glare, all those kinds of things. Thank you, Dr. Duggan, you answered one of the questions that we were hopefully going to get to. I do have one more quick question, and then we will wrap things up. I'm curious about when it could be appropriate for a child with migraine to take an over-the-counter drug versus when they need a prescription drug. Do you have any guidance for parents? Because we do have to be careful about the use of some of these drugs, especially overuse. Do you have any advice that you give to caregivers?
Duggan: That's a good question. And for most children and adolescents, we think about how severe is the migraine, and how long has it been since the onset? A lot of times we, and I'm the same way, we're in denial. Oh, I don't have a headache. It's like we think we can will it away, and we're going to tough it out. And it's a personality characteristic. We persevere. And it's actually a desired characteristic, sometimes, that we don't want to just pop a pill every time we feel pain. However, we have to think about, well, if it's already this bad, if it's already a 7, 8, 9, or a 10, then it's unlikely that it's just going to go away, poof, in the next 5 to 10 minutes. That's when we have to kind of to give ourselves a reality check and say, you know, this is probably going to persist for another couple of hours. I'm not going to be able to do the things I need to do or that I want to do, and maybe this is a good time to try to take that prescription, for example, triptan or use the neuromodulation device.
A lot of times what will happen, initially, is they'll say, let me try the over-the-counter medication first and see if it goes away. Give it 20 to 30 minutes. And if it doesn't, then I'll go on to the prescription medication or the device. But you don't have to wait. Sometimes we know our headaches, and we go, right away, oh, I have an aura. It's going to be a doozy. Then don't wait. Go ahead and try to nip it in the bud, treat it sooner rather than later, and so, hopefully you're not chasing it for several hours or days. I hope that helps.
O'Brien: I think that's a great answer. And good to know going into adulthood, too. If the child who has migraine continues to have migraine as an adult, it's good to know that information now. Because you're right. You're thinking, okay, well, I only have 8 of these a month. Do I really want to risk taking...it's a struggle. So learning good practices now is super helpful. I think I'm going to squeeze one more in here because we do have one last question, and then we will wrap things up. And I really appreciate everyone's time. I know we've gone a little bit long. But one person, Dr. Duggan, wants to know how can they determine if a child has rebounder medication overuse headache versus a different type of headache disorder?
Duggan: That is a golden question that there's been actual debates about at the American Headache Society. And it's really a diagnosis that is made in hindsight. So if there's a concern, if you think, okay, I have been consistently giving my child or myself taking 2 or 3 doses of any over-the-counter analgesic, 2 or 3 or more times a week consistently for a couple of weeks in a row, and my headaches are not getting better. In fact, they may be getting worse. The only way is to come off. And there's different thoughts about it seems kind of brutal to just stop cold turkey. Ideally, you can. But then also we say, well, if it's been an extended amount of time, for example, months or even longer that you've been taking a medication every day, even, then we say let's try to ease or taper off. So the only way to really know for sure is to try to come off the offending potential medication and then say, how do you feel?
So it's really a diagnosis that's made what we say and like we suspect this may be contributing to the headaches. And it's usually not by itself. It's in addition to the migraine and other diagnosis. And so that's why we really want to put together a comprehensive treatment plan to address everything.
O'Brien: Absolutely love that answer. And a reminder too, before you just take your kids off of any and all medication, talk to your doctor before just doing that yourself. Please talk to your healthcare provider and, like Dr. Duggan said, make sure that you have a plan, you have a treatment approach, which I think that was wonderful. So I just want to say a big thank you to Amy Graham with Migraine at School and Dr. Deanna Duggan for being panelists with us and sharing your wealth of resources and knowledge on this topic. We really appreciate your time tonight. Thank you guys both so much.
Graham: Thank you.
Duggan: You're welcome.
O'Brien: It's been fascinating to listen to the both of you, and we really appreciate all of those of you watching and listening from wherever you are. And that wraps up tonight's program.