The foundational building block of living with migraine starts with a diagnosis (our insurance companies tell us they need it?). In this episode, Kat and Skye share their own migraine diagnosis stories, discuss the differences between neurologists and headache specialists, when it might be time to seek out professional help, and share a few starter Qs for your first (or tenth) appointment.

You can also listen on our Spotify for Podcasters page and on Apple Podcasts.

 

Additional Reading:

13 Questions You Should Ask Your Doctor If You Have Migraine

7 Conditions People With Migraine Were Misdiagnosed With

 

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 the 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 sometimes rocky road to getting a migraine diagnosis. Hello, Skye.

Skye Gailing 

Hello, Kat.

Kat Harrison 

We find ourselves in the same place, which means that our episode one was not so bad that we got canceled.

Skye Gailing 

I know. I’m just imagining like the vaudeville cane pulling us off stage.

Kat Harrison 

You know, I thought it might happen. Especially when I told that weird story about space camp. But… we’re back!

Skye Gailing 

I can’t stop thinking about you going to space camp. It brings me joy every time I think about it. And I feel privileged to know about it.

Kat Harrison 

Yeah, I hope I have a story just like that for you today. But today we are going to be talking about what feels like a fundamental building block for migraine, which is getting a diagnosis. Which, as we know about in the world — I’m gonna say especially chronic illness and especially chronic pain — having a name and a label to what you’re going through is not only vital for how you experience it, but it’s also logistically necessary in order to get the care you need.

Skye Gailing 

Oh, yeah. Especially with trying to get medications or other treatments approved by insurance. You need that ICD-10 code.

Kat Harrison 

Sure do.

Skye Gailing 

Yeah, you need that official diagnosis to get things covered.

Kat Harrison 

We didn’t get to share a ton about our diagnosis stories in the first episode — which was purposeful, audience — but I would love to get to it now. So, Skye, set the stage for me. I would love to know the symptoms you were experiencing prior [to being diagnosed with migraine]… did you have to go to more than one specialist? What happened?

Skye Gailing 

So, in contrast to basically every other diagnosis story I have, this one was pretty direct. To paint the picture: You know, I’m 13, in a competitive choir in middle school.

Kat Harrison 

Hello, young Skye.

Skye Gailing 

Hello. We were raising money for an international competition at Disney World. (We came in second place, by the way.) But yeah, so we’re raising money at this yard sale, I start getting kind of like, cranky, and not just like 13-year-old angst. I was like, “Oh, my mood’s a bit off.” And then, I’m looking out at the trees, and all of a sudden I just see blurriness in my left eye. I was like, “Oh, this is weird. Maybe it’s just because like, I’m not wearing my glasses, whatever.” And at the time, I was only wearing reading glasses. So I was like, “My distance is usually fine.” And it just came on so suddenly, that I couldn’t see straight. It was terrifying.

Kat Harrison 

It is.

Skye Gailing 

I didn’t know. All of a sudden I was like, “Oh, my vision just stopped working.” And I say to my mom, I was panicking because I was like, “What is happening? I don’t know.”

Kat Harrison 

And you’re young too… 13.

Skye Gailing 

Yeah, I had no answers, so I was freaking out. And then all of a sudden, I get — on my left side/left-front quarter — you can put your hand over your eye and that’s the exact spot of pain. Yep, I get the worst headache I’d ever had at that point, or the worst head pain I’d ever had. And my mom she’s, luckily, well not lucky for her, but she’s very experienced with migraine. She’s been living with it for decades. But she knew immediately what was going on. And luckily, she took my concern seriously, very thankful for that. And so she rips off her sunglasses, gives them to me, and she’s like, “go sit in that chair” and tucks me into this lawn chair almost. And eventually arranged to have my dad pick me up from the yard sale. And she’s like, “You’re gonna go home, You’re gonna lay down in a dark room. I’m serious. Don’t open any windows. Don’t turn on any lights. I need you to take a nap.”

Kat Harrison 

That’s serious migraine protocol right there. “Go in a dark room. Tell no one you are there.”

Skye Gailing 

Yeah, she’s like, “Take my sunglasses. Go in the dark room, lay down, and take a nap.” She got so serious. I just remember somebody started — not picking on me — but being like, “Oh, why are you just sitting down? Like why do you have sunglasses on? Why are you not helping?” You know, just being a nasty teenager.

Kat Harrison 

People, do better. I’m gonna say that so many times this season especially. We’re doing a whole thing around misconceptions and stigma. Get ready, listener, because we’re coming.

Skye Gailing 

Oh absolutely. We are coming for everybody.

Kat Harrison 

It’s happening. But anyways, back to 13-year-old Skye in a dark room.

Skye Gailing 

Oh yeah, so my mom snaps at this kid and she’s like, “She has a migraine, leave her alone.” Which didn’t help my head but I was like, oooooh, look at her go. But yeah, so I get home, my mom eventually takes me to get the largest thing of Diet Dr. Pepper I think I’ve ever had and she’s like, “You’re gonna have to drink caffeine.” And she made an appointment for me with my… I want to say it was my pediatrician first. And then I got a referral to a neurologist, but I honestly might have just seen a neurologist because my mom was already seeing one. I’m not sure. Especially because it was, you know, 13 years ago.

Kat Harrison 

So how much time passed between that initial episode and actually going and seeing a neurologist? Do you remember?

Skye Gailing 

No, that was an interesting year because that’s when I also started experiencing a bunch of other symptoms for like POTS and stuff. So, I want to say it must have been pretty quick. Luckily, I live in a relatively small town, so at that time it was easy to get in with doctors. Also, luckily though, my mom kind of like “unofficially” diagnosed me before I saw somebody, so she was able to teach me home remedies and stuff.

Kat Harrison 

Does your mom have an actual formal diagnosis of migraine?

Skye Gailing 

Yeah, yeah. So she’s been diagnosed for decades, longer than I know my whole life. She had, like when I was a kid, I was really afraid when she told me she thought I had migraine because I’d seen her really just hit some low lows due to the pain — like an absolutely debilitating pain. She had experienced migraine pain and other symptoms every. single. day. of my childhood until she finally saw a good neurologist who set her up with a preventative. So now I think she would be considered to have episodic migraine but definitely used to have chronic, and even had the emergency room treatment too back in the 90s when she lost vision completely in both eyes. So she’s been through it, she gets it. Yeah, I’m surprised I can’t remember more.

Kat Harrison 

I think it’s interesting. There are definitely parallels between your story and mine. I’m curious when you actually went to a neurologist, what was the formal diagnosis? Did they just say migraine?

Skye Gailing 

They just said migraine. Yeah, I didn’t learn the terms “episodic” or “acute” or “chronic” until probably until like whenever pharmaceutical companies started advertising treatments more on TV and they’re like, “oh, for chronic migraine.” So yeah, I think it was just you know, general migraine for the longest time and started the journey of playing with different medications and vitamins and supplements then. I know we have parallels but pretty different experiences when it came to our diagnostic stories.

Kat Harrison 

And I need to tell this story because I think it’s important for everyone to know where my point of view is coming from. But my experience with migraine is so wildly different because something happened to me. I went from never experiencing pain, to experiencing a medical event, to having chronic migraine. So, I’ll share the story as quick as I can: but, relatively healthy [childhood], had had a couple of ear surgeries prior to when I was a teen — similar timing, Skye, that’s why I was like, “OK, you were 13, I was 15.”

Skye Gailing 

Oh, puberty.

Kat Harrison 

I love it when extra things, yeah, are added on top of puberty. So, I’m 15. I’m a freshman in high school, I had a really bad ear infection that just kept getting worse, kept getting worse. Had some difficulties with my surgeon at the time, not really something I want to get into, but basically was made to feel that nothing was that bad. And I got to a point where so many weeks had passed and nothing was working that we finally decided, OK, we’re going to have an exploratory surgery to see what’s going on. Surgery happens. In surgery, they discovered that I had a bacterial infection that had spread from my ear to my skull to my brain. I was given a PICC line for eight weeks. So, one of those really fun catheters hanging out my arm. At the time, there weren’t cool things… like when I took a shower, very much the take a garbage bag tied on both sides. Now there are super cool PICC line covers that I wish would have existed. So anyways, have a PICC line. I was given antibiotics three times a day. Six weeks into my eight-week treatment, I started experiencing symptoms, which ended up being vestibular loss. I was falling into rivers, falling down stairs, running into things, being extremely clumsy, having a hard time even walking up stairs, I was eventually diagnosed with bilateral vestibular loss. And basically, what happened is that one of the side effects of the antibiotic is ototoxicity, which means that I was essentially poisoned by the antibiotic even if my blood levels were not showing it — wiped away my whole balance system, basically had to start from scratch in terms of reading, writing, walking. This matters because that was when chronic migraine started.

I went from rarely having any kind of head pain to daily levels of head pain. And this is where a parallel comes in, is that visual disturbances was actually probably one of the biggest parts of where I was like, “Something is wrong outside of the vestibular-ness.” I was losing my vision, my vision was changing colors. I was a really big athlete, and I actually really credit that. You don’t recover from vestibular loss, but I was able to maybe reach some level of normalcy a little bit faster because I was an athlete. But when I would run or I would exert myself, my vision would just completely shut down. And I was like “Mmmm, I don’t think that this is correct.” And [my diagnosis] was also pretty straightforward in the sense that I went and saw a neurologist. They were not a headache specialist, but I think I was exhibiting every single trademark symptom of migraine. I was experiencing almost every day and have continued to experience it almost every day, even though the levels of pain have changed. I got that migraine diagnosis 20 years ago. Never had any reason to doubt it. So, I think it’s interesting that it was so quick and I feel like more often than not, that’s what I hear. I haven’t heard many stories from people who are like, “I visited five doctors and they finally diagnosed me with migraine.” If you aren’t having the classic symptoms, if you are having things where you’re not experiencing any kind of pain at all, I can see where that might be like a little bit more difficult. But I always find that fascinating.

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 

One thing that I was just like, my mind was blown Skye, is we actually asked our community — we did it again on YouTube, Instagram, the site — and we said, “Who diagnosed you with migraine?” And this is so fascinating to me, because we give them a whole bunch of options. And we asked them: Was it a family doctor? Was it a neurologist? Was it a headache specialist? Was it someone in the ER? And I was surprised by the results. Were you, Skye?

Skye Gailing 

Yeah, well, I think the results kind of illustrate my experience, at least what I can remember of it. I do think it was interesting just how close the top two results were.

Kat Harrison 

So, for the most part, it seems like family doctor and neurologist are kind of head to head. And when I saw that I go, OK, I think I was letting my current feelings about general practitioners cloud my vision in a metaphorical way (not actually cloud my vision). I have some mixed feelings on having just a primary care physician, my experience in primary care while having a bunch of other chronic illnesses and I just go straight to the specialist.

Skye Gailing 

Same.

Kat Harrison 

Most of the time [I] coordinate my own care — tends to be easier. I tend to have less emotional pain. But I find it really interesting that a lot of people had their family doctor diagnose them. But I guess it makes a lot of sense. Depends on where you live, depends on what health care system you’re in. Depends on what your insurance is like… if you even have access to insurance.

Skye Gailing 

Yeah, exactly. And I think like you were talking about, you know, if you have like a “typical” migraine experience, you’re displaying the common symptoms and signs, you know, a family doctor/general practitioner can kind of just check them off the list. Like the family doctor I think can be a good first step if that’s what works for you, and that’s what you have access to. But I do think it is important to get that referral to a neurologist or to a specialist who maybe can help you with care or come up with alternative treatments that maybe the family doctor doesn’t have experience in or wouldn’t think of. I know seeing a neurologist… absolutely crucial to my treatment plan.

Kat Harrison 

What’s interesting, and this is something that took me a while to learn, is… each health specialty, right? Whether we’re talking about cardiology, OBGYN, pulmonology, there are specialties within specialties, right?

Skye Gailing
Yes, big time.

Kat Harrison
Yes. And I think that a lot of the time when we say, “Oh, I saw a neurologist,” I’ve learned over time, that’s actually not the same as seeing a neurologist who specializes in headache diseases. And I can’t recommend enough, that if you have access to one, if you have the ability to get to a clinic — I wish there were more of them — but I do feel like headache specialists… I’m really excited. We are going to have a couple of headache specialists on with us this season and I’m like, can’t wait to get them on a mic and learn from them. But it really changed the game and has nothing to do with the fact that “general” neurologists don’t know what they’re talking about. It’s just that treatments and research… they move fast. And like not every medical professional can keep up with everything, right? And there are lots of neurological diseases out there. Migraine, despite how common it is, is only one sliver of that, right? There are a lot of different reasons someone sees a neurologist. So, I forget, do you have a headache specialist?

Skye Gailing 

So, I did not even know that a headache specialist was a possibility until I met you, Kat. And you were like, “Yeahhhhhh.”

Kat Harrison 

I am such an influencer everyone, wow.

Skye Gailing 

Yeah, the Headache Hat, the saying “migraine” singular, headache specialist being in existence, like I had no clue that was a possibility until you’re like, “Yeah, I’m seeing mine.” And I was like, “Excuse me? What? That’s an option? What’s that?” I do see a neurologist and I love him so, so much, but like you were saying, there are subspecialties within specialties. And so his whole thing is more about autonomic dysfunction and neuropathy. So I see him more for like small fiber neuropathy, and chronic pain, and my POTS and he’s been phenomenal. He also is currently treating my migraine, but even his office was like, “What if we consult a headache specialist?” Which reminds me I need to make a phone call.

Kat Harrison 

Put that on your to-do list.

Skye Gailing 

I should, yeah, thank you for the reminder. But yeah, I think headache specialists is something that maybe if more people knew about them, and maybe if we one day have more headaches specialists. that’ll change that poll result. I think more and more people would seek them out.

Kat Harrison 

I think that that makes a lot of sense to me. I feel really lucky, I actually have like a head pain clinic that is within a decent drive. And that’s where I’ve been the last 10 years. And they really only treat headache disorders. And that to me, as someone who — and this is where like it gets a little tough — I won’t go too much into it, but my type of migraine is really tricky to treat. When I had something happen to me, that can’t be reversed, I can only treat my migraine pain so far. And so working with a head pain clinic who just focuses in on that has been really life-changing. So, I hope that for anyone that has access to one, you’re able to get an appointment, no matter how long the waitlist is dun, dun dunnnnn.

Skye Gailing 

Oh my goodness.

Kat Harrison 

I’m curious, Skye, what would you say to people who are experiencing some type of symptom that perhaps a WebMD said, “You could have a migraine!”? What do you think is the tipping point to go and seek out care?

Skye Gailing 

I think it’s interesting because you and I have such like defined moments where we were like, “We need to do something about this.” I think if something is interfering with your quality of life, or you are no longer able to do your daily activities, that that’s a big sign that something else is going on. And you know, you just can’t ibuprofen your way out of it.

Kat Harrison 

Despite what people may think you cannot…

Skye Gailing 

Yeah despite what people…

Kat Harrison 

…ibuprofen your way out of migraine.

Skye Gailing 

No, no. And as my GI doctor will tell you, sometimes you just shouldn’t take as much Advil as you think. Anyway.

Kat Harrison 

That’s a really good point, though, about quality of life. I feel like that that to me is the real definer. The other thing that I really keep in mind, and this is actually like… it’s really hard to live with migraine and not go to the ER all the time.

Skye Gailing 

Yes.

Kat Harrison 

And sorry, ER, emergency room, A&E depending on where you live. And the reason is: Sometimes every migraine attack, if you don’t have some type of acute treatment that you can use, feels like emergency-medicine level. But a lot of times our experiences with emergency medicine and living with migraine — don’t know about you, Skye — I’ve had some not amazing experiences in the ER. Whether there’s a little bit of gaslighting going on, whether there’s just a not trusting the patient. Don’t know if you can relate to ah…

Skye Gailing 

I think you know I can relate.

Kat Harrison 

Yep, Yep. It makes me so sad that it’s such a common feeling, especially around migraine patients, but I hear it a lot with any kind of other chronic illnesses. But where I was going with that is when I have a new symptom that scares me — that is when I go in.

Skye Gailing 

Yes.

Kat Harrison 

When I’m experiencing something that I’ve never experienced before. Totally unrelated, a few weeks ago I ended up in the emergency room because I was having lung pain, which is absolutely not something that I deal with. Really glad I did. I had pleurisy. Good to know. But yeah, I think when you have a symptom that scares you or it’s interfering with your quality of life, for sure.

Skye Gailing 

Yeah, if something new happens, like it stinks because I’m also getting like emotional thinking about our various traumatic ER experiences. But yes, if you have a symptom out of the blue that scares you, or if you do have episodic migraine, or even if you have chronic — like if you experience a severe intractable migraine — meaning that you cannot break it, you cannot do anything to get rid of that pain, especially with the other symptoms. It’s important, what did they say now? “72 hours of intractable migraine, you need to seek emergency care.” But also, it’s important, even if you’re like, “Oh, well, I’m in severe pain, but, you know, it hasn’t been, like, however many days.” If it’s like the worst head pain of your life, or if you are severely dehydrated from the GI symptoms, please go see someone. Like Kat and I are not doctors, but…

Kat Harrison 

Nope, gonna say that every time — definitely not a doctor over here. But I think that that as patients, I think that that is a really good recommendation and barometer to use for yourself. OK, so let’s get practical, right? So, let’s put on our imaginary caps where we are patients who may be seeing a neurologist or headache specialist for the first time. What are some questions that people can ask a neurologist? What are some points we want to make sure they bring up to make the most of that first appointment?

Skye Gailing 

Alright. Well, if you are in like the midst of the diagnostic process, and you’re seeing, you know, one of these specialists for the first time, I think first and foremost you got to ask like, “Hey, what’s your experience treating migraine patients? How many patients do you treat? What types of treatments are you familiar with and comfortable using?” I’ve run into that in the past, where I’m like, “Hey, what about this medication that’s on the market now?” And the provider’s like “Mmm, I don’t know. I haven’t had experience with that. I couldn’t tell you.” And it’s frustrating.

Kat Harrison 

It is, very much so. And I think that that’s the good…we have to remember that about medicine. It’s not like every single doctor knows the exact same stuff. And it depends on what you’re looking for, right? Are you looking for non-prescription remedies? What are you looking for in a provider? And I think it’s totally well within your limits as a patient to ask, “Hey, what do you know about? What do you tend to recommend?” I always love to ask, I don’t ask this anymore since I’m such an established patient, but in the past, I would ask, “In your typical patient population, what headache conditions do you diagnose people with? Are you mostly working with chronic migraine patients? Do you work with vestibular migraine patients? Have you ever treated someone with silent migraine? Anyone with a stomach migraine, which I know it tends to be more common in children?” But it’s good to know, because there are so many different types of headache disorders, what they gravitate to.

Skye Gailing 

Yeah, and I only learned this in the past few years, but you’re allowed to interview your provider. You make that appointment, you’re not beholden to this provider or this office, you are there to interview them — because they’re the ones who are going to be providing care to you.

Kat Harrison 

You’re literally paying them for a service.

Skye Gailing
Indeed.

Kat Harrison
Indeed. And you deserve to get your money’s worth. And I feel like, not just money’s worth, but like it’s cliché in the chronic illness world — you know your body best — but you really do. And I think it’s usually pretty easy for me at least, Skye, to gauge in that first appointment whether or not a practitioner and I are a good fit. Because I think we all look for certain things when we go and see a doctor. I really like someone who knows significantly more about diseases. Like my ear surgeon, for instance, the reason why I know that he is the right one for me is that he teaches me about the anatomy of an ear. He answers my questions about research, like he’s so hyper focused. I don’t like it when I have to educate.

Skye Gailing 

That is a red flag for me as well.

Kat Harrison 

The one thing I wanted to make sure we got in, Skye, was I want to talk about symptom tracking for a second, because I feel like this is something that every single headache patient really should be doing prior to seeing their first neurologist, if they haven’t already. So, because what’s going to happen is, right, you’re going to walk on in — perhaps you’re clutching your head, perhaps you are wearing sunglasses, perhaps you’re puking into a garbage bag. (Have I done that before? Just saying.) And they’re going to say, “How often are you experiencing symptoms? What time of the day? How long do they last? On a scale from one to 10?” Gross. “How much does it hurt? Are you eating? Does eating cause the pain to happen?” They’re going to ask you all these questions. And then what happens is, if you don’t come armed with that information, they’re gonna make you go home… well, they will always make you go home. But then they’re gonna say, “Keep track of your symptoms for two months, and then come and see me again.” Whereas, if you’ve already been keeping track of your symptoms for a couple of months going into that first appointment, you’re already going to have such a leg up before you get to your next one. Have you symptom-tracked before? I feel like everyone has.

Skye Gailing 

Yes. Well, I mean, when you’re trying to like find answers for anything about yourself, you’re like, “Oh, I guess let me write this down or let me keep track of…”

Kat Harrison 

Did you do it digitally or did you do like straight up pen and paper?

Skye Gailing 

I’m trying to think like for most things, I’m a pen and paper…

Kat Harrison 

Ditto.

Skye Gailing 

…kind of gal, in part because screens hurt sometimes. But yeah it’s important, especially if you’re waiting like months to see a specialist. I know my…

Kat Harrison
Yes.

Skye Gailing 

…my neurologist, he currently has like a year-long waiting period. Keep track, that way you know, the second you get in there you’re like, “Alright, here’s what we need to talk about.” And the dreaded question I feel like is the, “Have you tried a headache diary?” And I get that in the ER, I get that with neurologist, I get that with rheumatologist. And it’s like, “Gee, I never thought about that. Never.”

Kat Harrison 

I can’t believe it! I certainly don’t want to be empowered by my health and figure out why I’m experiencing pain. Thanks so much. But it really does help, I think, going into that appointment because it is useful for the patient, right? I had surgery several months ago and I always keep not only a medication log, but I also keep a pain log. And when you’re in it and you’re experiencing, it’s really hard to connect the dots. And when you go and see a doctor, they’re not going to be able to connect the dots as intensely if you don’t give them data. So, I think that tracking your symptoms and presenting them — I do know there are a lot of really great apps. I think Migraine Buddy is one.

Skye Gailing 

That’s what my mom uses.

Kat Harrison 

OK, OK. You can just input it on your phone, you can pull up your app when you get there. I’m sure that you can download reports and send them. So, if I could give you one tip, that would be it. But wow, our time today flew by! I also wanted to just say, good luck to you all out there. If you are searching for a diagnosis, if you know that something is wrong, I hope you feel empowered to go and get it checked out. You deserve to feel better. You deserve to know what’s going on in your body.

Skye Gailing 

Perfectly said. Thank you all 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 wide landscape of migraine treatments. We’ll also be joined by our very first guest this season.

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.