The American Migraine Foundation is a non-profit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling condition that impacts more than 39 million men, women and children in the United States. Dr Christine Lay, an expert and patient herself, along with Nim Lalvani, a patient and advocate, sat with me to discuss the dynamics of migraines, the symptoms and how they manifest in individuals, as well as solutions. We also discuss the dynamics of the challenges in finding a provider who can help you and practical solutions for you to find relief as you are looking for that expert.
Summary
The American Migraine Foundation is a non-profit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling condition that impacts more than 39 million men, women and children in the United States. The AMF was founded in 2010 to provide global access to information and resources for individuals with migraine as well as their family and friends.
Working alongside the American Headache Society, the AMF mission is to mobilize a community for patient support and advocacy, as well as drive and support impactful research that translates into treatment advances for patients with migraine and other disabling diseases that cause severe head pain.
In this episode, guests Dr. Christine Lay, an expert and patient herself, and Nim Lalvani, a patient and advocate cover:
The challenges with getting diagnosed with migraine given the dynamics of our healthcare system
How to get properly diagnosed and tools to help you do just that
The impact of migraines on individuals and loved ones
How to manage migraines including available treatments
Transcript
Georgie Kovacs: Is there a difference between a headache and migraine?
Dr Christine Lay: Definitely there is a big difference. A headache is one of the most common human ailments worldwide. A review was done a number of years ago, looked at 110 different countries worldwide and found that headache was extremely common.
However, migraine is a brain disease, where one of the clinical symptoms of migraine is a very disabling often moderate or severe headache, but it's associated with a number of other brain or neurological symptoms. This distinguishes migraine as a very unique entity compared to something like tension type headache, which is the most common type of headache worldwide, but it's rarely disabling, unlike a migraine.
Georgie Kovacs: Can you define what debilitating looks like for migraine sufferers, specifically?
Nim Lalvani: It can be different for everyone, and even within one individual, no two attacks can be identical. The key feature is that your life is really disrupted in the lead-up to an attack, the attack itself, and even the recovery from the attack. Often, people associate migraine with severe head pain, but there's also people who don't get the head pain but get everything else that's associated with migraine.
There's a lot of stigma that the 1 billion people worldwide face when living with migraines, not only from a personal interpersonal level, meaning as the individual, they feel embarrassed to talk about this debilitating experience, because they don't want to see be seen as irresponsible or complaining.
Dr Christine Lay: Migraine is variable amongst different patients, and it's variable within an individual. Some people have one migraine their entire life, and there are other people that live with a migraine attack every day. It is a spectrum and often, there is a delayed diagnosis.
Someone in the more common and full blown part of a migraine attack will have a severe headache, and it's debilitating. One of the diagnostic criteria is you can't get done what you need to get done. Eighty percent of individuals during a migraine attack are unable to function, where some are even bed bound.
A smaller percentage aren’t able to do most of what they need, but the majority of patients are really finding it hard to function even with moderate activity such as light housekeeping, driving your children to a soccer game, getting your work done at the office. Making social plans with friends can be ruined because of these migraine attacks.
A headache is one component of migraines. There are all these other neurologic features - intolerance to light-intolerance to sound, intolerance to smell, even intolerance to touch. Many patients in the midst of a migraine attack will say, “I gotta take my necktie off, I need to take my glasses off or take my ponytail out or I can't stand the tag on the back of my clothing, I just had to take my socks off.” Everything was very bothersome. We call that cutaneous allodynia. In addition, there can be neurologic features such as tingling numbness and paraesthesia, which is rare.
In general, patients during the migraine attack will say, “I had a hard time finding the right words, I had a hard time coming up with the ability to balance my checkbook, I went into the kitchen to get something and two hours later I was in the laundry room doing something else and completely forgot that I had to unload the dishwasher.” So there can be some degree of confusion associated with this episode.
That's where the terrible stigma comes in for individuals with migraine, because it's thought of as just a headache. And even well-meaning co-workers or family or friends will say, “Oh, I have some over the counter medicine, I get headaches. Here. Take this, you'll be fine.”
But migraine is so much more than just a headache, and it requires very targeted and specific therapies, lifestyle therapies, vitamin therapies, mindfulness, meditation, wellness, and acute therapy. Acute therapy is a medication an individual will take as an attack is coming on to turn it off to stop it in its tracks. There are also medications that people will take on a daily basis and an oral formulation to prevent the episodes or make them less burdensome and less severe.
There are newer therapies available, which are wonderful, targeted therapies for individuals with migraine, which is a once-a-month or once every three-month injection to be given at home. There's also an intravenous one available now, and we have many new migraine medications on the horizon. It's a really great time for people who suffer with migraines because there's so much hope right now.
Georgie Kovacs: Is it common to not have a headache with a migraine episode?
Dr Christine Lay: It's rare. It's much more common in individuals who are older; we call it acephalgic migraine. They have a lot of the migraine features but not the headache. There are other individuals who have what we call vestibular migraine, which is an imbalance in the vestibular balance system of the brain. These are individuals who will feel like they have vertigo or they're off balance or they're spinning or they're nauseated and unwell, but the headache is very mild. Other individuals more commonly will have a pretty severe or at least bothersome headache as part of the migraine attack, but the acephalgic migraine, a little bit more common in the older individual, but certainly we do see it across the ages. And that makes it hard to diagnose.
Nim Lalvani: The other thing people would be surprised to hear or learn is that migraine does not discriminate against age, race, or gender. While it is predominantly prevalent in females, that doesn't mean men or children don't have it. It’s interesting to see that full spectrum and even how individuals will probably not get diagnosed till later in life, but when they finally are diagnosed, they look back and recognize what they were living with all of those years.
The American Migraine Foundation is trying to hone in on educating all populations and subpopulations about recognizing migraine as a disease and disorder of the brain and when to seek help. There are many individuals who've taken decades to get to a diagnosis, and they've had everything from a sinus headache diagnosis to having their teeth pulled because they thought the pain that's originating in their face area was related to dental issues when really and truly it was a headache or migraine feature that they weren't sure of.
As Dr. Lay said, there's a lot of stigma that the 1 billion people worldwide face when living with migraines, not only from a personal interpersonal level, meaning as the individual, they feel embarrassed to talk about this debilitating experience, because they don't want to see be seen as irresponsible or complaining. That means that it affects their relationships with their partners, their families with their loved ones, their children, they feel like they're not reliable, or they're not showing up 100%.
That gets carried over into the workplace. If there's not an understanding work environment that understands accommodations for invisible illnesses, then you're talking about managers who won't give you that flexible work schedule, who won't dim the light above your cubicle or in your office.
Unfortunately, there are still a lot of healthcare professionals who don't understand migraines. That stigma is worse when there's only about 700 of headache specialists in the United States, yet there are 39 million people in the United States who have migraines. You can imagine that the waitlist is very long to get into specialty care. Thus, if you're seeing a primary care provider who doesn't understand migraine, you get a compounding experience leading up to your diagnosis.
Georgie Kovacs: Let's talk about diagnosing migraines. There are probably two buckets of individuals:
I have a migraine, I know I have a migraine, I can't get help.
I have something going on and I need to figure this out.
How should someone approach diagnosis?
Dr Christine Lay: The number one thing is you have to advocate for yourself, and you have to be prepared. Everyone who thinks they might have migraine and is suffering with disabling headaches really needs to go to the American Migraine Foundation website. There are a ton of tools there to help you prepare to help you be organized to help you track your headaches to track your symptoms so that when you get to the primary care provider, you are prepared and you understand what your story is.
We don't want to rain on the parade of the primary care providers. The average medical school has about four hours of teaching on headache, not migraine alone, but on all headache disorders across four years of medical school. We are continuing to graduate physicians from medical school programs who have an empty toolbox when it comes to managing headache and migraine.
We're trying to change that. We're advocating. We're increasing programs. At the University of Toronto, we've introduced a sort of mandatory education in the medical school program, which is helping.
But when you get to see your doctor, your doctor may or may not be familiar with how to diagnose migraine, but it's pretty simple to diagnose. You need someone who's got headaches and that they're recurrent over time. In order to make the diagnosis of migraine, you need to have had five attacks. The headache itself might be throbbing, steady and dull, or pressure-like, so the quality is important.
But it's not the only thing. Close to 50% of migraine attacks, the headache component can be a bilateral or two sided headache. It’s important to track the kind of pain you're feeling and where it is in your head. The most important feature of a migraine attack is that it is moderate or severe, and it interferes with your ability to function.
Then there are associated neurologic features in that you need to have some degree of light and sound intolerance or some degree of loss of appetite, nausea, and about 20% of patients with migraine will actually be vomiting.
Someone who says, “I have this bifrontal pressure pain. It's hard for me to function. I'm staying at work because I've run out of sick days but I'm really not getting everything done. And I'm looking for medicine to take and yes I wish I could dim the lights” - that's a migraine.
It can be fairly straightforward to diagnose and there are a number of tools available through the American Migraine Foundation but also patients can help their physician. The American Headache Society has a number of great tools for that primary care provider. The majority of primary care providers are willing to work with you.
Don't go into your annual visit and say, “My asthma is good. This is good, and by the way, I have these bad headaches. Can we talk about them?” Make an appointment specifically to talk about your headaches.
Georgie Kovacs: Maybe I'm oversimplifying. When I heard 700 specialists, 39 million suffering in the US, I'm thinking, how is anyone going to be helped? It seems that, if the patient is educated and monitoring their symptoms and speaks in the right way to their doctor, they don't have to be on a long waitlist. Who are the patients who need experts?
Dr Christine Lay: Yes, we don't want to oversimplify it, but if you're prepared, you have the right information, you have a primary care physician that can work with you, you can at least get the ball rolling, get the diagnosis and start some therapy.
Nim Lalvani: Exactly. It's really important as a patient or as someone who believes they have migraine or some type of headache disorder, to go in prepared with that information. And there are many, many resources from the American Migraine Foundation or other patient organizations that's called a headache diary. They're even mobile apps that help you capture this information. And that's the data that a provider is really going to want to hone in on. They want to learn about what you're experiencing. As Dr. Lay said,
Where's the pain?
When do you notice that this is happening more often? Is it when you're waking up in the morning or that right before bed? So that happened only on the weekends.
It's those key details that are going to help the provider hone in on what you're speaking about and maybe take them away from thinking it's a sinus headache, or allergy and bring them closer to a migraine diagnosis.
If you go in unprepared and you don't know the words to describe what you're experiencing, you're then casting this wider net. And that's where that longer time to diagnosis, getting an accurate treatment pathway, or any of those things that happen when someone is delaying the process.
One of the other pieces about getting to diagnosis and the difference between speaking to a primary care provider versus when it's time to go to a headache specialist. Primary care providers are well equipped to deal with a long list of diseases, whether chronic or acute diseases.
And one of the things is getting to a headache specialist is when it becomes a bit more challenging to navigate meaning the toolbox of the primary care provider is not working, and you're still at that state that you were in months ago. It's not that you shouldn't go to a headache specialist. It's just that you should start with a provider, usually a primary care provider. And then that conversation will help determine what can be done in that moment, or whether you need to move on to a specialist for a deeper look into what's happening.
One of the things to help prepare for a visit is the American Migraine Foundation’s scripting tool. It helps you identify the goals that you're trying to accomplish from that provider visit.
Georgie Kovacs: Let’s talk about causes versus triggers.
Dr Christine Lay: There are triggers, which may not actually be triggers anymore. If you go back centuries, headache was thought of as a nuisance. Even individuals who are suffering with migraine were told they were stressed out. President Kennedy had migraines, but it was hidden from the country because at that time, it was believed to be a condition of women who didn't cope well or women who got stressed out or women who were nervous and anxious.
The science has exploded over the last 40 years, and especially over the last 10 or 15 years. We now understand that this is an inherited condition for the most part and there are more than 100 genes that have been linked to migraine. If one parent has migraine, each child has probably at least a 75% chance of inheriting the gene and getting migraine.
There are a number of different genes and a number of different compounds that have been identified. Most importantly and recently, cgrp calcitonin gene-related peptide, which is present in everyone, but it's been found in individuals with migraine during a migraine attack, the levels go up very high, and after they take a medication to turn off the migraine attack, the cgrp levels normalize. But the importance behind the science is that it has led to this tremendous understanding of migraine as a biologic neurologic disease. And now we have targeted therapy for migraine.
The piece about triggers and causes. Many migraine patients will tell us, “Oh, the perfume caused my migraine, the bright light at work caused my migraine.” That may not be the case. What we're beginning to understand, and we've known for a long time, but we're really honing in on it now, is that migraine is a process. There's the headache phase, but before the headache begins, there's this prodrome phase, there are a number of different changes in brain and body chemicals that are going on. One of those changes that takes place is cravings for sweet things. Many individuals will reach for chocolate or a cookie or a cupcake and then say, “Oh, I shouldn't have had that piece of chocolate because it caused my migraine.” But in fact, the desire to eat that sugary food may have been part of the prodrome. It may also be during the prodrome that it wasn't suddenly a bright light, it wasn't suddenly a louder coworker, it wasn't suddenly that someone sprayed perfume, but now your brain is vulnerable. There's a vulnerability during this prodrome phase. I could be sitting here now and be fine and then in a few minutes start to get a migraine because I also have a migraine and blame it on the lights or something. Nobody made the light brighter. Nobody made the noise louder but now my brain is aware of it and my brain is unable to filter it out as unimportant information. So these triggers may not be causes. They may be part of the prodrome.
There are definitely causes. Weather changes, hormonal changes, not staying hydrated, drinking the wrong things like drinking sugary drinks or colored juices, too much caffeine, too much alcohol, but not all triggers are causes.
Georgie Kovacs: What solutions should migraine sufferers be aware of - natural and medications?
Nim Lalvani: Before we go into the treatment pathways, one of the things that I want to address is that there is so much information on the internet. You can find basically anything you're looking for to confirm the angle in which you're looking for that information, right? The American Migraine Foundation did a round up of migraine facts circulating on the internet, which I think is a great place to start. The reason why we are emphasizing the American Migraine Foundation is because we are connected to the American Headache Society, which is the leading premier professional organization of neurologists, headache specialists, and researchers. The information that makes it on the ANS website has been created and vetted by the experts in the field and meant for patient consumption. It's easy to read and timely.
Dr Christine Lay: When patients come to see us and this is true of the majority of my colleagues, you take a really thorough history. You find out what their other health conditions are and take a deep dive into lifestyle which is part of the SEEDS (sleep, exercise, eat, dairy, and stress).
For example, we want to know what you are drinking. How often are you drinking? People are not camels, you can't come home at the end of a work day and say, “Oh, I didn't have anything to drink. I'll just drink a bunch of water and everything will be fine.” You really have to drink throughout the day. We really encourage hydration. If there's no other issues, kidney or otherwise, drink a liter and a half to two liters of water.
Be mindful of your caffeine - the kind of caffeine and when you have your caffeine. Be mindful whether it's decaffeinated or regular and what you are putting into your coffee. One individual comes to mind who is drinking two cups of coffee daily, regular sized coffee but we found out they were putting in all this artificial sweetener and artificial creamer in the coffee. We got rid of that and their migraine dropped dramatically.
What are you eating? In my practice, I don't put patients on strict diets for migraine. There are a number available. As Nim said, you can read about the myths on the American Migraine Foundation website because it's very helpful.
Some providers will say, “Give up these foods and your migraine will improve.” I have a more holistic approach because I know, as having migraine myself, that bananas might be a trigger for me, but they're probably only a trigger. If my period is due or the weather changes, because triggers build on each other. I describe it to patients like you're climbing up a set of stairs. If you get to the landing, you're going to turn on a migraine. And maybe there's one step that's a big step that doesn't. You're horrendously sleep deprived, and had to give a huge presentation. That's enough. But for other individuals, or at other times, the weather changed, and my period was due, and I ate that banana. Or for some individuals, there are certain drinks that will do it to certain foods. So be mindful of those, be aware of those, but I don't necessarily obsess over them.
All of us generally think about whole foods being best. I usually say to patients fresh is way better than frozen, which is a little bit better than canned and boxed. So if you want to have a particular food, can you make it at home? Can you buy a version in the store that isn't full of additives and colors because additives and colors can be problematic for patients?
Sleep is really important. As a nation, we are completely sleep deprived and many people pride themselves on this, but one of the most potent risk factors for later life is dementia and cognitive decline. So we find out:
What time do you go to bed?
Are you on your phone before you go to bed?
Are you watching on Netflix, a really intense, powerful show that's going to keep you up at night?
How long does it take you to fall asleep?
Once you fall asleep, do you stay asleep?
When you wake up, do you feel refreshed?
Are you napping during the day?
These could all lead to a true underlying diagnosis of a sleep disorder, sleep apnea, restless legs, something like that.
But for the vast majority of migraine patients, we found it in our group, and it's been published numerous times that many individuals with migraine have very poor quality sleep. And it isn't necessarily a specific diagnosis of sleep apnea, but very fragmented quality sleep.
And so if you can really work on your sleep, your sleep routine, get rid of the phone within an hour before bed. Have a good sense of what your room is like. Is it a nice cold temperature? In your tracker, you may find you always have a migraine on a Saturday. It could be post stress letdown. We would say to a patient on a Friday, hydrate really well. Make sure you're eating well and get out for an afternoon break. Get out into nature. Listen to nature, feel nature, smell nature, hear nature, and Saturday morning don't sleep in. When you sleep in on a weekend, even one hour beyond your routine, weekday wakeup time, you set yourself up for a migraine attack.
Commonly, migraine patients will have Saturday, Sunday or a Monday headache and think, “I must hate my job or I must hate my life Monday morning, and I always have a terrible migraine.” But it might be your sleep.
Nim Lalvani: The migraine brain likes to have a routine, meaning that's why the extra hour of sleep on a Saturday or Sunday could potentially bring on a migraine attack.
Dr Christine Lay: For sure. Routine is critically important for the migraine brain and a lot of migraine patients say, “Oh, that's so boring. I don't want to live by routine.” However, there are certain things that are more critical for routine and sleep happens to be one of them. I do have patients cheat on a weekend. By that, I mean they will get up at 6:30 or 7am, have a little bit of protein, and then go back to bed. Or they'll have a little bit of coffee because they're used to morning coffee and then go back, but if you just sleep through just exactly as Nim said that extra hour can be a killer.
Georgie Kovacs: When does someone with migraine need to be on treatment?
Dr Christine Lay: SEEDS help reduce the number of attacks, the frequency, that can help with the severity of the attack, and the duration of the headache. But the vast majority of individuals with migraine are going to need at least an acute therapy, that is, a medication they take as the attack is coming on to turn it off and shut it down. Untreated, a migraine can last three days. So even if there's an individual who says, “I don't want any drugs, I'll just suffer through,” I tells them about evidence suggesting this condition can get worse over time, so we want to stop it in its tracks.
If acute therapy isn't enough, and that you may find your primary care provider has a toolbox of these two or three medicines they're comfortable with and they're not working, then you need to be referred on to a specialist.
We have targeted therapy based on that cgrp molecule that we talked about, which makes it incredibly exciting. However, insurance can complicate this. Doctors may say, “I do have these targeted therapies I give you but first we have to fail this blood pressure pill, this antidepressant pill, this anti-seizure pill because the insurance mandates it.” And it's really unacceptable. If we have targeted therapy for a medical neurologic condition, we should be able to prescribe it first.
Georgie Kovacs: What is your greatest hope for women's health and the future of migraines?
Dr Christine Lay: I'm incredibly hopeful right now. There are so many different migraine targets on the horizon. We have devices now, where you can put it on your arm to help turn off a migraine attack. There are these targeted new medications, but I think my hope is that women, in particular, who are suffering with migraine will feel empowered and educated and confident to go and speak to their provider. And I hope the more AMF educates, the more AHS educates, the more medical schools that we educate physicians that they will then meet a provider that says, “Wow, that must be really, really tough for you, and I'm going to make your life better because when you look at neurologic conditions, headache is just about the only one, whether it's cluster hemicrania continua, or a migraine thing, that you can actually change someone's life. You can turn it around with the right therapy.”
Nim Lalvani: My hope for the future is a lot like what Dr. Lay said. I hope that all patients feel empowered, but women in particular. I really want women to feel like they're empowered, that they have the tools, they can talk about what's going on with them. Historically, women have been sidelined in many arenas of our lives, whether it's the workplace, or balancing work and at home personal life and commitments, and finding that time and space to recognize they are not okay. A woman's body is complex, a woman's experience is complex. And we now have tools to understand that complexity. As Dr. Lay said, this isn't a disease we can turn around someone's life if they get in soon. And if they communicate and advocate for themselves.
Georgie Kovacs: Thank you for what both of you are doing. This has been enlightening. And I love that it's a holistic way of thinking. I just can't believe so many people have to suffer through it.
Dr Christine Lay: One thing we didn't touch upon is that women of color have historically been discounted as their pain not being real, or their pain being much less than it really is. And so this is hugely problematic for these women who are suffering with migraines. The American Migraine Foundation and the American Headache Society are working hard to empower these women, because it's mostly women, and to work with providers and businesses. The American Migraine Foundation is working with black run businesses to educate people to empower people to be able to stand up and to be heard and to be believed.
Resources
Download the American Migraine Foundation’s patient tools
Sign up for the World Migraine Summit
About the American Headache Society
Check out all of Fempower Health’s resources on Autoimmune and Chronic Disease.
Subscribe to the Fempower Health Podcast on Apple Podcast, Spotify, or anywhere else you may listen to podcasts.
Stay in touch with Fempower Health by signing up for the newsletter.
About my Guests
Dr. Christine Lay is a professor of neurology at the University of Toronto where she holds the Deborah Ivey Christiani Brill Chair in Neurology and she is the founding director of the Centre for Headache at Women’s College Hospital. As someone who has had migraine most of her life, Dr. Lay understands firsthand the disability of this common brain disorder. She advocate for her patients and educates trainees and colleagues to better understand and treat migraine. In her position as a board member of the American Headache Society and the Canadian Headache Society, she works tirelessly on a clinical and research level to improve patient care and lessen migraine stigma. She is excited to be part of the American Migraine Foundation and work with AMF leaders to move against migraine.
Nim Lalvani has worked in patient engagement, patient programming and patient advocacy for over 12 years. She has held leadership positions at organizations including the National Kidney Foundation, Younger Survival Coalition and New York State Health Foundation. As director of the American Migraine Foundation, she plans to fully commit to the needs of patients affected by migraine and ensure that they have access to support, resources and research that will empower them throughout their patient journey.
About Fempower Health and the Founder
Georgie Kovacs, is the founder of Fempower Health, the go-to resource for all things women health serving women, their providers, and companies looking to build/improve on products for women. She also hosts the Fempower Health Podcast, where she interviews experts to help women better understand how to navigate their health both day-to-day and in partnership with their providers. Her mission is to minimize the years many take to seek proper diagnosis and treatment.
Georgie founded Fempower Health after her first-hand experience with infertility and endometriosis. Leveraging this experience along with her 20+ year tenure in the biopharmaceutical industry and consulting, she leads this movement to empower women. With limited research dollars and women’s “training” to grin and bear it, both women and doctors are in the impossible position to diagnose and treat conditions with little information. Women deserve more and better information, insight and innovative health solutions.
**The information shared by Fempower Health is not medical advice but for information purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions.
May contain affiliate links