The inaugural season of Health & (un)Wellness — Mighty With Migraine — kicks off with this well-rounded primer on the common yet disabling neurological disease. Meet hosts Kat and Skye as they explore some foundational migraine vocab and rant about barometric pressure changes. Come for the brain-bending info, stay for the laughs!
You can also listen on our Spotify for Podcasters page and on Apple Podcasts.
Additional Reading:
26 Different Types of Headache and Migraine Disorders You Should Know About
25 Surprising Physical Symptoms of Migraine
Episode Transcript:
Skye Gailing
Welcome to Health and (un)Wellness.
Kat Harrison
A podcast brought to you by The Mighty, where we put the human back in health. I’m Kat.
Skye Gailing
And I’m Skye, and we are your hosts for this season, Mighty With Migraine.
Kat Harrison
Between the two of us, our heads have over 33 years of experience being a pain in our brains.
Skye Gailing
Yours too? Let’s be friends who wear sunglasses inside.
Kat Harrison
Now onto today’s episode where we’ll be discussing the basics of migraine and laying the foundation for the rest of this season. Woo, here we are Skye! So glad you are joining me for this adventure of Mighty With Migraine.
Skye Gailing
Glad to be here with another expert in lived experience.
Kat Harrison
I feel like one thing we wanted to make clear today is why Skye and I are here. Why are we the ones that are hosting the season? What makes us experts? And I feel like the thing we talk about so much at The Mighty is just being an expert of your own body, and being an expert in the terms of lived experience. I personally have lived with chronic migraine for 20 years, which sounds really wild when you say it out loud. What about you Skye?
Skye Gailing
Yeah, thinking about it. Probably like 13… 13 and a half years.
Kat Harrison
Goes by so fast — your migraine diagnosis is essentially a teenager!
Skye Gailing
Yeah, you know, spent almost the entirety of puberty with it, really great time to like start dealing with a chronic condition. So Kat, to even begin with: What is migraine? And why are we saying “migraine,” and not “migraines”?
Kat Harrison
Oh, get ready everyone — this is one of my favorite topics. But I also want to be clear that it’s actually a really hard adjustment to make language-wise. Because it’s not actually fully common in the general population and also in the neurology world. Calling it “migraine” is actually a development, I don’t know, I would say the past five to seven years, I feel like especially the past five years, there’s been a real big push for it. And the reason, Skye, is migraine is not just a symptom, it can be. It is a complex, disabling neurological condition. We’ll be saying it a lot this season, we’ll have guests on who also call it “migraine.” You’ll just notice it’s part of our vernacular and something that we’re really trying to push forward.
Skye Gailing
Yeah, I’m actually relatively new to just saying “migraine” singular. I started working at The Mighty February of last year and that’s about what I started saying “migraine” singular, because I had a really great conversation with Kat. And she was like, “Ah, you’ll notice in our style guide, we always say migraine singular.” And I had never thought about it that way. And that framework has really changed, I think, my relationship with the condition that I’ve been living with for so long.
Kat Harrison
That’s why we do it. That’s the whole point. It’s not just so that others take it seriously, but so that you take it seriously yourself. I actually read an article the other day, and it compared the language change to saying “asthma.” And I felt was really smart.
Skye Gailing
Yeah, I saw that!
Kat Harrison
Yes. OK. So the point being that we just don’t say, “well, they had some asthmas the other day,” right? We say, “that person has asthma,” as if it’s a diagnosis — they have asthma attacks. Same with migraine.
Skye Gailing
This is something we’ll probably rag on a lot — the phrase, “oh, it’s just a headache!”. It’s not. So, migraine: neurological condition and it is a chronic, incurable illness, whether you live with chronic migraine, episodic migraine… and it affects every facet of how we navigate the world. So it’s much more than just “ah, take an ibuprofen and call it a day — get back to work.” It’s a debilitating condition.
Kat Harrison
It’s also very common. And I think that that’s the part that is so difficult to me. I feel like you pulled a stat, Skye?
Skye Gailing
Yes.
Kat Harrison
How common is it?
Skye Gailing
So according to the American Migraine Foundation —
Kat Harrison
So official.
Skye Gailing
Yeah, I love providing evidence and citations to back it up. So migraine affects one in four households in the U.S. and more than 1 billion people globally. And it’s the third most common disease worldwide.
Kat Harrison
Yup, that sounds about right to me.
Skye Gailing
Yeah, it’s so much more common than people think it is.
Kat Harrison
It is, and yet it’s still so just like wildly misunderstood and stigmatized I feel like. I think the other thing I really, really hope that we portray the season — and I’m really excited to have guests who will talk about their experience as well — is that everyone’s experience with migraine is different. There’s also a bunch of different kinds. And I think that that’s — we will try our best to represent as many migraine experiences as possible — but it’s hard to do in the singular season. And I think that I’m really excited for later episodes and we’ll hop into symptoms that people get and things like that. But I think there are a couple of terms that we actually really wanted to touch on that we’ll be saying a lot, and we just want to make sure we’re all on the same page. So, Skye, tell me.There are two kind of classes of migraine. There is chronic migraine and then there is episodic or acute migraine. Can you tell me the difference?
Skye Gailing
Yes, I would love to. So, we have chronic migraine. That’s defined as 15 or more headache days per month for at least three months.
Kat Harrison
That’s me.
Skye Gailing
Oh yeah, at least eight of those headache days involve other migraine symptoms/features. So, wide array of migraine symptoms — it’s really a numbers game to differentiate between chronic and on the other hand, episodic or acute migraine, which is 14 or fewer headache days per month.
Kat Harrison
I didn’t ask you. Do you have chronic? Or do you have episodic?
Skye Gailing
It’s been a complicated journey for my diagnosis. I was originally diagnosed with episodic/acute migraine, you know, just take the medication when you start to feel the symptoms come on. But as I’m sure most people out there can relate to, migraine changes over time, your relationship with the changes, the symptoms you experience with it can change, triggers might change. I’ve fit the criteria for chronic for a while now, but I have not seen a neurologist in a hot minute. And I’m currently looking for a headache specialist.
Kat Harrison
Oh, just wait until we dive into that!
Skye Gailing
Oh, yeah.
Kat Harrison
So we asked our community whether they had acute or whether they had chronic, and then we also asked our YouTube audience and also our Instagram — I find the results fascinating. So let me share. So on the site we asked people, and 65% of people have chronic and 35% have acute. And I think that makes a lot of sense to me, Skye, when we think about who comes to The Mighty. And it tends to be people who are living with conditions for a very long time. And so I feel like that kind of fits the bill for chronic. But we found that YouTube, it’s the exact opposite. What were the numbers for that, Skye, for YouTube?
Skye Gailing
Yeah, so for our YouTube audience, 63% of those votes went to acute/episodic migraine, 37% went to chronic. So like you said, almost the exact opposite. And then our Instagram audience was actually a bit more evenly divided. So we had 54% said acute/episodic. And then 46% said they have been diagnosed with chronic migraine.
Kat Harrison
I think that it’s so interesting to me that it’s just different in each place. I think it also shows kind of the variation and the people who live with it. I also think it’s interesting what you said, and I wonder how many people can relate to the fact that it’s actually changed for you.
Skye Gailing
Yes.
Kat Harrison
Right. Like your experience with the disease used to be different. I think there are a lot of reasons behind that. For me, I think that other health conditions have really played into the levels of pain, the consistency of my pain. And that was actually something else I wanted to talk about, Skye. So when we talk about migraine, there are kind of two categories of it. It’s either your primary condition, or it’s your secondary condition. Please teach me: What does that mean?
Skye Gailing
Yeah, so migraine is usually considered a primary headache disorder, which means there’s no underlying cause to it, no other condition that is leading to the migraine condition. And then, if it’s secondary, and I don’t know how often people label migraine as secondary, but we can get into that. If it’s secondary, that means it’s a symptom of another condition or like a brain injury, it results from something else. So I know that we’ve also talked about, especially on The Mighty, there are a lot of conditions that overlap with migraine or that migraine is a symptom of.
Kat Harrison
Like autoimmune? I feel like a lot of autoimmune patients…
Skye Gailing
Yeah.
Kat Harrison
Have Migraine as a secondary.
Skye Gailing
Yeah, autoimmune, connective tissue disorders, fibromyalgia is a huge one where people also have migraine.
Kat Harrison
I think it’s really interesting whenever I talk to other people. And by the way, we didn’t mention this earlier, but migraine is so common that I’m pretty sure we have about seven people on staff. And we’re a pretty small team behind the scenes. But the fact that seven of us experience, I think, is a really fascinating little microcosm. And I think it speaks also to how common it is. Just like walking out in the world, I kind of like to play that game where I’m going to the grocery store, and I’m like, “How many people here have migraine?” But I usually only do them the days where I’m like half clutching my head.
Skye Gailing
Oh, yeah.
Kat Harrison
Hoping that I don’t fall over, which is why I’m thinking of it constantly. I think one thing I think about a lot is what conditions we identify with — let me give an example with anxiety. I don’t have a formal diagnosis of anxiety. But I am 99% confident that I live with some version of generalized anxiety disorder, but it’s not really the condition that I identify with. Like if we were doing an anxiety podcast, I don’t think I would feel comfortable being the host on it. But for some reason, migraine — I think it’s because it’s the thing that affects me all day long, from sun up to sun down. It’s the condition that rules my life around. So I wonder, sometimes, if that plays into it, right? You have other conditions aside from migraine, right?
Skye Gailing
Oh yeah, you and I… we got a plethora of comorbidities going on.
Kat Harrison
I think we could pretty much host every single season of Health and (un)Wellness for every other condition we have. Watch out.
Skye Gailing
Absolutely. And it’s interesting you bring up anxiety because I feel like I identify the most with anxiety or with mental illnesses, maybe because I was diagnosed with them first in childhood. But I also think, and like we said we’ll get into this on a later episode, but I think part of it might be, there’s such a stigma associated with migraine, a little bit different than the ones associated with mental illness, but it can be difficult to outwardly identify with the condition or, you know, something like that. And I think when it comes to physical illnesses, I definitely identify most with migraine because like you said, it has the largest or at least most frequent impact on my daily life more so than my other conditions.
Kat Harrison
Definitely. And I think it’s a disease or an experience that is way more wide than we actually talk about. I feel like someone says “migraine,” and the first thing people think of is the head pain.
Skye Gailing
Yes.
Kat Harrison
First of all, not everyone experiences head pain, which is, you know, a fascinating concept. But then the other thing is that there are actually multiple phases of migraine. So there are four different phases: You have the first phase, which is prodrome, you have the aura phase, which not necessarily everyone experiences — that can look like visual disturbances, for instance, or sound disturbances. You have the headache phase, which again, not everyone actually experiences the headache, but I would say it’s probably one of the most common symptoms of migraine. And then you have the postdrome, or the dreaded migraine hangover. And so that can make a migraine attack last for like, a really freaking long time. And I think that that, to me, is why it is so disabling. It’s not just “Oh my gosh, I had to spend 48 hours in my bed.” It’s, “Oh, I spent the two previous days to that with the most intense fatigue and cravings and mood changes.” And then “Oh, look at that. Now I’m experiencing visual disturbances. And now my head hurts. And now I have to spend three more days resting in bed to recover.”
Skye Gailing
Yeah, it’s exhausting. Exactly like you said, it’s not just the if you do get the headache as a symptom, it’s not just the headache. Of course, like I only had, I don’t know, the epiphany a couple of weeks ago, where I was like, “Wow, I keep having to go to the bathroom, like my stomach… the pain is so bad.” My stomach’s not usually like this. So then the next day, I ended up with a really horrible migraine attack, like the head pain really got to me. And I was like, “Oh, wait, my two days of gastrointestinal distress were leading up to this. How great.”
Kat Harrison
I feel like that’s the most classic chronic illness experience ever — where we create these narratives in our head. And we’re like, “Yeah, of course. That’s why I’m experiencing it.” And then a week later, you’re like, “No, yeah, that was actually why I was doing it.”
Let’s take a quick break to change our shades and then get back at it.
Ubrelvy Migraine Mid Roll
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Skye Gailing
And we’re back!
Kat Harrison
I realized that we also asked our YouTube, our Instagram, and our site community about the symptoms that they experience — we’ve kind of been talking about in abstract — but I kind of wanted to dive into just how varied the experiences were. So Skye, I asked the community, gave them a bunch of migraine symptoms. I didn’t even get to include all of them because migraine is complicated. But here are the ones I asked and I said, “On your typical migraine attack or during your typical migraine day, which symptoms do you experience?” And the choices were headache, nausea or vomiting, brain fog or confusion, vision loss or distortion, dizziness and/or vertigo, sensitivity to light (also known as photophobia), sensitivity to sound (also called phonophobia), extreme sensitivity to touch ello-ello-deanya? See Skye, can’t even say it! How do you say it?
Skye Gailing
Allo-allodynia… I don’t know, one of those words that I’ve only ever read.
Kat Harrison
Look at us: Faking it till we make it. It is essentially what happens when someone touches you and you’re experiencing pain in another part of your body and your nerves are like, “Hey, yo, why are you touching me? That hurts.” That’s exactly what my nerves sound like everyone… moving on. And then the last two I asked about were mood changes and weakness or numbness in your face or body. Then we said, “Select as many as you want.” And when I look at these percentages, they’re all over the place! Which I think they’re so scattered, everything is pretty much anywhere from like 8% to 15%. None of them are really highly concentrated. I feel like that does migraine a disservice. Just because I think it’s like all health conditions, right? Say we think of bipolar disorder, for instance, and we say, “Yes, this is the experience of what it’s like to experience bipolar.” But how you experience it versus how someone else experiences it — totally different.
Skye Gailing
Yes. Yeah. And I think migraine, along with other conditions like bipolar, that kind of stuff, you know, leads to delayed diagnosis or not understanding that, “Hey, this thing’s going on in my body. I should get this checked out.” You know, it’s really common you hear all the time, people are like, “Oh, yeah, I have chronic sinus headaches.” And it turns out, no, they have migraine. They just have thought, because stuffiness and a runny nose, that can also be a warning sign of a migraine coming on.
Kat Harrison
It also can be a sign of a rare disease. So…
Skye Gailing
Oh yeah.
Kat Harrison
Fun little detour here.
Skye Gailing
Great segue.
Kat Harrison
In addition to chronic migraine, I also have a rare disease called SUNCT syndrome. And that is, it’s very hard to explain, but essentially means that I get a bunch of tiny little headaches between one of my eyes, it’s never the same eye, so every time I get an attack, it’s never right. It’s never always left. But it also doesn’t ping pong back and forth. Like I will have a SUNCT day that’s just the right. But it’s accompanied by autonomic symptoms, like my nose running, and me tearing, and part of my face drooping. But that’s also a symptom of a migraine.
Skye Gailing
How do you differentiate? You know, it’s hard.
Kat Harrison
Well, you live like me, Skye, and you live eight years thinking you have ocular migraine, or thinking you have cluster headaches, and you second-guess yourself so much that you don’t bring it up to your neurologist, and then you realize… something else is going on. And then you get diagnosed with SUNCT. And it’s very different.
Skye Gailing
Yeah, it’s hard because what is it? I think like the American Migraine Foundation, they also have a stat that there’s like over 150 possible headache disorders, or something like that. And you know those symptoms are overlapping. I mean, the category has “headache” in the name. So it can be really hard to differentiate. I also, like we said, we combined we have a lot of comorbidities going on. I have Ehlers-Danlos syndrome, and that is accompanied by POTS — postural orthostatic tachycardia syndrome — which is an autonomic disorder. So yeah, those kinds of headaches or those blood pressure changes… so hard to differentiate between migraine, POTS, and like, what works for one doesn’t work for the other. It’s an interesting guessing game.
Kat Harrison
If anyone has any tips for how to identify which condition is causing you agony, please let Skye and I know — you can find us at a great place called themighty.com. Haha, just kidding. But not. Really, hit us up. @ me, please. So my question actually to you Skye, since we’re on the topic of symptoms, I would just love to know what is your least favorite migraine symptom that you experience?
Skye Gailing
I mean, I feel like the obvious answer is pain — that is the most debilitating for me. That’s what I spend the most time being like, “Hey, I’ll keep all my other conditions, can you take away my migraine pain?” If I could just trade that in, I’ll be fine with everything else.
Kat Harrison
I love the symptom barter, I often do that to the universe, which is like, “Yo, if you could just like lessen up?” I have a low to moderate level of migraine every day. We’ll get more into that another day about how fun that is. But nausea? I can’t stand it. And I have identified the reason, and it makes so much more sense to me now, which is that nausea makes me feel out of control. And when I feel out of control, it significantly spikes my anxiety. It’s typically what gives me an anxiety attack. I don’t love the feeling of just being on a boat. If I want to be in a boat, Skye, I would go on a boat — not into it.
Skye Gailing
Yeah, when I was in high school, I developed pretty bad vertigo as a result of migraine. That feeling of a lack of control. I mean, that feels to be part and parcel of living with a chronic illness of any kind is that lack of control, like, “Hey, why is my body doing this? I didn’t tell it to do this. Please stop.” And it’s so frustrating, that feeling of powerlessness. Ughhhh. I can’t stand it.
Kat Harrison
Do you feel the same thing every time by the way, like is every attack kind of the same for you?
Skye Gailing
Oof, it used to be pretty standard.
Kat Harrison
Mine are too right now. They’re pretty same old, same old.
Skye Gailing
I think I would go through phases where I’m like, “Ah, I know this will be in my left-front quadrant in my head and I know when I get vertigo, the room spins to the right” or whatever. But within the past several years, it’s kind of a surprise each time — like I thought I had a handle on my triggers and those have been changing a bit too. And I think back to speaking about powerlessness, it’s like when you don’t have control over your triggers. Kat, you and I have talked about how weather is a giant trigger.
Kat Harrison
Goodbye. I wish… it’s so, so funny. Every time I have a really bad migraine — like for instance, today, the weather sucks, it’s raining, the pressure change last night, the temperatures have been up and down. And then I think to myself, “You know what? I do pretty well with dry heat. I should just up and move to Arizona.” Yes, but then the summer comes and I hate my life. And I’m like, “Well, I’m going to move to a place like Alaska, where it’s always snowing,” and then it snows and my brain explodes. So, maybe I should go to space?
Skye Gailing
Honestly, maybe that’s the answer. NASA would definitely accept us. We could make it past all their tests, no problem.
Kat Harrison
But would they actually accept me? I feel like I would get so sick on… OK, so I went to space camp.
Skye Gailing
Wait, listeners, I had no idea about this. This is incredible. Yes.
Kat Harrison
And I bring this up, I swear it’s related to migraine, but I went to space camp. When I was in fifth grade, there was a random donor who donated millions of dollars to our district. And every single fifth grader — it was like 11 elementary schools. By the way, this is the biggest point of contention between my brother and I because he is so jealous that I got to go. Anyways, so we got to do all of the anti-gravity, and the thing where you spin and all the simulators, but this was before I experienced migraine. Doesn’t that sound terrible right now?
Skye Gailing
Absolutely. I watch videos of people doing zero-g and like my uncle was in the Air Force, so I’ll talk to him about it. But I cannot fathom that right now. That also speaks to how debilitating or how much interference migraine has in our daily lives, like that having to plan out activities or having to refrain from a lot of activities because like, “Oh, what if this thing becomes a trigger all of a sudden? Or what if I’m out and about and the humidity changes suddenly, and I have to go home right away?” There’s so much effort and consideration that goes into it.
Kat Harrison
Sure is. I feel like one thing when we were brainstorming, because I also want to be clear, there’s a whole, whole team of us putting this podcast together, Skye and I are just the bright faces (maybe not so bright, you don’t even know what I look like right now). Skye’s wearing incredible lipstick, like bring it. But when we are brainstorming the topics for this season, to me the thing that stuck out is that we didn’t get to put all the topics that we wanted in each of the episodes. We kind of laid out what we wanted to do from start to finish and we’re not even going to get to hit them all, which I think really shows the multifacetedness of migraine or really any kind of health condition, but I feel like migraine specifically. The way you experience it physically, the way you experience it emotionally, the way it logistically affects you. It’s all really like fascinating stuff that I’m really excited to get into. I think the other thing is I want to do a really quick lightning round, Skye. If you’re up for it.
Skye Gailing
Yes, bring it on.
Kat Harrison
Because I feel like you know, I feel like people need to get to know us better. So cracking my knuckles, but not because I really hate the sound of it. OK, I’m going to say a question, and you just have to say what pops into your mind. Are you ready?
Skye Gailing
Yes. Let’s do this.
Kat Harrison
I’m going to start us off with a very soft question, which is I know you have a dog. What’s your dog’s name?
Skye Gailing
Oh, it’s Pip. I know it was lightning round but she’s the cutest little baby ever and she won’t stop whining outside the door right now. Sorry if you can hear her.
Kat Harrison
Cool! OK, my dog’s name is Doxon. He is currently laying behind me like an angel.
Skye Gailing
Oh, what a good boy.
Kat Harrison
So I’m gonna have Doxon call Pip and be like, “Come on, they’re recording, Mom.”
Skye Gailing
Like, “Pip get your stuff together.”
Kat Harrison
Yes. OK, next question: What’s your go-to comfort item during an attack?
Skye Gailing
My go-to comfort item, not necessarily comfort, but sunglasses — always have them on hand. I have several pairs, so I can change up my look but really it’s sunglasses, and thanks to Kat, now a fan of the Headache Hat. Those are mine. What is your go to-comfort item?
Kat Harrison
Headache Hat, all day long. I swear everyone, I am not an influencer. And my co-workers know this, I am not a trendy person. Like whatsoever. Skye is constantly teaching me phrases that I don’t know about. So Headache Hat, for those that don’t know, it’s just like a wearable ice hat. Headache Hat is actually the brand that I have but there are a bunch of different kinds. I swear I should have a whole freezer full of them. I wear them constantly — they numb me to pieces and is the most sensational feeling when I am in debilitating pain. OK, here’s a controversial question. You ready? OK, when it comes to migraine, caffeine or no caffeine?
Skye Gailing
Always caffeine, no doubt in my mind. Caffeine of all kinds as I look at my iced coffee right now that I won’t shake, because, microphones. Kat, how about you?
Kat Harrison
Caffeine, all day long. Coffee is my favorite thing in the world. But I do want to say it all started with a neurologist. So, ahem, if we’re talking about science, listen to this science. So I’ve done a lot of neurologist shopping in my life — and part of it is that I used to live in New York City and had to leave New York City because I got so sick. I’ll tell that tale another day, but I went to a neurologist there and I sat down in his office, which now that I’m thinking back, it’s very fascinating that I went to his office, versus like sitting in an exam room, but that’s New York City for you. And he set down two glasses in front of me. One was a glass of water, and one was a cup of coffee, and he goes, “These will be your best friends.” And then of course, he made the caveat of like too much caffeine and then having, you know, caffeine withdrawal headaches and everything like that. But it is seriously such a huge part of my pain management plan. I woke up in the middle of the night last night with a really bad attack behind my left eye. And as soon as I got up and out of bed, I was like, “I need to go get espresso” and I feel so much better than I did three hours ago. And it works for me, but it doesn’t work for everyone and it is actually a really big trigger. Speaking of, what’s your biggest migraine trigger, Skye?
Skye Gailing
Oh, it is stress. Yes, speaking of things you can’t control. Yes, stress is a huge one for me. I actually had several visits to emergency rooms lately for migraine. Horrible, worse attack of my life — story for another time, but the biggest trigger for it was stress. And so dealing with that. Mental health therapy, also an important part of migraine and chronic illness treatment. How about you, Kat? What’s your biggest trigger?
Kat Harrison
It’s weather, we already talked about this, but weather. And I will say: inconsistent sleep schedule.
Skye Gailing
That is huge.
Kat Harrison
Yes, yes, I pretty much have to go to bed around the same time. Every day. I try and wake up at the same time every day, even on the weekends. If I’m fluctuating, if I sleep in too long, if I get less than I mean… I’m a nine-hour.
Skye Gailing
Oh nine is the sweet spot for me as well.
Kat Harrison
I should have asked that question: How many hours of ideal sleep? That’s a great lightning round question. But if I don’t get that — automatic migraine. Which I find really interesting. So Skye, this was so fun. Let’s do it again next time on episode two.
Skye Gailing
Sounds great.
Kat Harrison
Awesome.
Skye Gailing
Thank you Kat for, you know, sharing your experiences going on this migraine adventure with me and thank you everyone out there so much for listening. We hope you laughed and learned in equal measure and that your head is kind to you today.
Kat Harrison
Join us on our next episode where we’ll be talking about the ins and outs of getting a migraine diagnosis.
Skye Gailing
No pressure to bring your best self, just your authentic one.
Kat Harrison
Because we’re here for you in sickness and in health. Download The Mighty app for more.
Skye Gailing
Buh bye.