Starting Treatment For Your Migraine or Headache Disorder

Jaclyn Duvall, MD:
Welcome to NHF Insights, the National Headache Foundation’s podcast, created with the support of our industry partners, where patients and headache experts share candid conversations about living with migraine and headache disorders. I’m your host, Dr Jaclyn Duvall. I’m a board-certified neurologist and certified headache specialist. I’m also founder of Headache Specialists of Oklahoma and a board member of the National Headache Foundation.

This episode is about starting treatment and is part of our Patient Series. Today we’ll explore what to expect when starting a new treatment, the difference between acute and preventive treatment, and what to do when a treatment doesn’t work. Let me introduce today’s guest, a Navy veteran, patient advocate, and speaker living with chronic migraine following a traumatic brain injury, Cheryl McJoy. Cheryl is a member of the National Headache Foundation’s Patient Leadership Council. She brings firsthand insight into living with chronic migraine while continuing to work, travel and live fully. Welcome, Cheryl.

Cheryl McJoy:
Welcome. Hello. Hello, Jaclyn. I’m so happy to be here.

Jaclyn Duvall, MD:
We are thrilled to have you. I think this is going to be a fun episode today. I want to start by having you share a bit about your journey, because it is an interesting and complicated one.

Cheryl McJoy:
Yes. My journey started in the beautiful country of Japan. I was on deployment on Okinawa, and I fell between 10 and 16 feet off the back of an aircraft. We were working on an aircraft engine. That’s all I remember. Like, okay, I do remember one other thing. But it was just me freaking out, and that’s it. That’s all I remember from that. And from that moment forward life changed. Things were crazy. My body was all over the place and I couldn’t figure out what was going on. Doctors couldn’t figure out what was going on. And eventually, 17 years later, I was diagnosed with a traumatic brain injury. And migraine was secondary.

Jaclyn Duvall, MD:
Seventeen years to receiving a diagnosis. Can you tell me about that time and what it meant to you to receive a diagnosis?

Cheryl McJoy:
Yes. The only reason that I even went back to the doctor, my son at the time was a teenager, and he was like, mommy, something is wrong with you. You’re not right. And that broke my heart. And so I went to the doctor, and I was like, I’m going to fight. I’m really going to fight to figure out what’s going on. And eventually I was given the diagnosis. And once I got the diagnosis, things started to make sense. Like all the things before that were scattered, the scattered symptoms, not remembering my name, forgetting my childhood memories, waking up in a corner in excruciating pain and seeing all these little flashes of like light everywhere. Light is cute sometimes, when you have a migraine, but it’s not. And so that was kind of the beginning of the journey. Getting the diagnosis was the beginning.

Jaclyn Duvall, MD:
What did it mean to you to receive a diagnosis?

Cheryl McJoy:
It validated that I wasn’t crazy. Honestly, even the doctors had used the word crazy in reference to me. I mean, my last name is McJoy, so there’s a lot of joy, but there’s not a McCrazy. But I felt seen for the first time as if I know what I was saying and what I was fighting for all these years, that there is something, a medical term, that validates that something is real.

Jaclyn Duvall, MD:
Right. I also tell my patients, I think a diagnosis also helps them understand this is a disease and that they’re not alone. This has been documented historically, and we know that things that you’re describing are described by other people living with this disease. It’s not all in your head. Thinking back to when you were first diagnosed after 17 years, took a long time, what happened next? What were those first steps in your treatment journey?

Cheryl McJoy:
The floodgates opened up. Getting the diagnosis opened up treatment options, and it allowed me to even research what can I do. Like, what are some things that I can do. Not what a doctor can do, because this is my body and I wanted to be in charge. And that’s what the diagnosis did. And because it was kind of complex, but it allowed me to take control of me. And that was so important because before I didn’t feel like I had any control.

Jaclyn Duvall, MD:
Gosh, I love that. I want you to come to speak to my patients because we talk a lot about ownership of your life. And as a provider, I see myself as an educator and someone to stand by and support, make treatment decisions together. But ultimately, you’re the decision maker of your body. So, talk to me about some of those things that you chose to do on your own that were helpful.

Cheryl McJoy:
Well, after I did some deep, deep diving and did some research, one of the first things that I decided to do, if you couldn’t support me on my journey, you couldn’t be on the journey with me. Because I was in a lot of pain, and I was still trying to figure things out. And I only wanted people on my team who could support me. Some of the other things that I did is, I started to try to figure out what was causing it, because I had never even heard of a trigger before. Like what? I mean, I was in the military, so when you say trigger, it means something else to me, right? Not a migraine. So just trying to figure those things out because I was determined that I was going to figure it out. So, I don’t know, I didn’t want to be another statistic.

Jaclyn Duvall, MD:
So, for someone who’s maybe new on this treatment journey, what are triggers that you started to learn about or have since learned about?

Cheryl McJoy:
Food. I learned that there were certain foods that would trigger me. Eating at certain times, or even something as simple as not eating. Some people are sensitive to light. Light didn’t really bother me. But if I got overly stressed or allow people to stress me out, then me allowing people to stress me out would send me into a spiral which would create a migraine. And those migraines wouldn’t go away.

Some of the other things was the migraine medicine. I know they were giving me drugs to make me feel better, but some of the migraine medicine was causing migraines, or they were making me feel worse. Some of the other things that I did is I discovered that if I could be happy and joyful and laugh a lot, that that would help to take the edge off. I was pissed. I was like, 17 years of my life I’ve lost. Seventeen years people have ignored me. Doctors, not just doctors, but people that I work with, people that I knew and that I loved. And I was mad about all of them. When I say pissed, I was really pissed. I was mad about all of that. So, I would go yell at the ocean because I couldn’t yell at anybody else.

Jaclyn Duvall, MD:
Well, you could have, but I liked that you did all of these things in such a healthy way, really sounds like you stayed very grounded. And I also love, you know the same neurotransmitters that are involved in laughter and happiness are helpful in pain response, so you were finding a therapeutic modality that goes beyond just prescription medications. I love that.

Well, I do want to pivot to the discussion with your provider and treatment options and finding out what did you and your provider decide about your treatment goals and what to work toward?

Cheryl McJoy:
So, once I knew I had a migraine and I knew like some of the treatments, then I made a decision based on my lifestyle and what I wanted. And I was researching some of the side effects as well. And having that conversation with my provider, so that way I know the doc providers only had five minutes, so in this five minutes, let’s have the best conversation about me, because this is my time, right? And that was it. And then the provider giving their inputs as to why they think, what I think works or doesn’t work. And so, trying to be more collaborative with the providers because they could understand some of like the new prescriptions that were available or some of the new treatments. But I understood me and my body and somewhere in the middle was an answer.

Jaclyn Duvall, MD:
And you mentioned before being a mom. How did you communicate the impact of medications potentially on your ability to be a mom and to function?

Cheryl McJoy:
Initially I didn’t know that. It wasn’t until after it happened. Tell your funny story. So, it’s not funny, but I actually set something on fire, one of the medications. I didn’t know it and I had lit a candle, lay back down in the bed, and my son had to put the fire out. And after that, he was like, no more medication, no more like incense, nothing like that burns. But that medication had me so out of it that thank God my son was at home. And so, he was the one who was really paying more attention. I was kind of loopy and out of it because I was in so much pain, not really understanding what was going on. And I’m grateful that I had people in my life who could see the difference between the old me and what was happening now. So, I say my family members probably were the most important part of that not myself.

Jaclyn Duvall, MD:
That’s important. Because sometimes when you are starting a new medication, your body may be unaware of even the cognitive impacts of these medications. It’s important, though, I think, that people understand that what one person may experience on a medication is not the case for someone else. And that when one medication isn’t right, there are other options. And so, tell me about kind of your journey in finding the right treatment.

Cheryl McJoy:
I tried a lot of holistic things and some of those worked, some of them were terrible. But I also tried some prescriptions that the doctors recommended. And my favorite one was getting a shot in the juicy part of my eye. Like that was the best. That even though it sounds painful, but it gave me the best five minutes of relief of my life.

Jaclyn Duvall, MD:
And so that, for our listeners, is what we call a nerve block. So, the juicy part is not the medical term, but I love that because you’re speaking from the patient view and you’re calling that, look, that’s the part that works when someone injects that nerve in particular. I think something else that oftentimes we don’t do a great job explaining as providers is that many of these treatments can take months to start seeing improvement. Did you experience where you kind of like had to hang on with a treatment? Or talk to me about initially starting oral medications.

Cheryl McJoy:
All right, Jacklyn. I went in this the most impatient patient. I want to put this stuff in the microwave and I wanted to see results like before I took the medicine. Right? It’s not the reality. I was probably the worst patient ever when it came to that because he was like you’ve only been taking it for a week. But to me, it’s a week. I need for this to work, like you gave me this diagnosis. I want instant ,yesterday. Like you knew I was coming. And some things literally took three months, six months before I actually started to, where I felt like I was starting to see some relief. I think that was even more difficult in the 17 years of not having answers.

Jaclyn Duvall, MD:
Sure. Frustration with treatment and waiting. I do try to explain to my patients this is a marathon and not a sprint, and I would rather you feel comfortable with a medication and us titrating it where it could be utilized long term. And I also think it’s important to recognize that it may not be just one treatment. You’ve mentioned holistic treatments, lifestyle changes that you’ve made, but also layering therapy can be important.

The next thing is that managing our diagnosis is important, but after we’ve started treatment, that’s not the end of us kind of keeping track of what’s happening. Did you continue to use any sort of migraine calendar or tracker for your symptoms? Tell me about kind of how you noticed if a treatment was helpful.

Cheryl McJoy:
I tried the trackers and I tried like all of the apps and different things. And I don’t know, I was in a fairy tale like, well, if I ignore it, it’ll go away. I won’t see the symptoms. And that didn’t work like for some reason. But once I actually started to like to write things down, I’m more of a person that needs to write something on a sheet of paper. And I have my phone, so I would write, if I didn’t have a paper, I would just in my phone I would take a little note, oh, you didn’t eat breakfast this morning. Now you have a migraine. Oh, you went to the gym and worked out and you didn’t have, and you drank. I used to drink a lot of caffeinated drinks, like, and that was one of my triggers I eventually discovered, too much sugar. But only by taking like copious notes and meticulous notes for a period of time were I able to identify some of those things. I didn’t like it. But once I saw the benefits of it and how it was helping, and then I could take that information to my provider, and they could actually see patterns as well that maybe I hadn’t even noticed.

Jaclyn Duvall, MD:
I think what was interesting to me was learning they’ve actually done studies on individuals tracking versus not tracking and kind of the lookback period. And it turns out we are pretty bad historians of our own body. And so, I do think it’s very important to be able to look back and go, oh, yeah, I had most days of the month at 8 to 10 out of 10 pain. And now I have most days of the month at 6 out of 10, which, don’t get me wrong, is not an end goal for us. But that is an improvement. If I’m not having side effects to a medication, maybe I need to keep it and layer on or push forward.

So sometimes when trying to get relief, people unintentionally make things worse. Taking too much of it or even too many days in a row, not only can it be dangerous for our GI system, for our kidneys, but also can actually increase headache days. And this is something most of my patients find very surprising. They’re like, why don’t they write that on the bottle? And so, I do think it’s important when you’re seeing a provider to have a conversation with them about I’m utilizing this as needed, picked it up at my local pharmacy, but how many days can I take it and what impact could it have.

Cheryl McJoy:
Or even some of the natural things that I like, things that I was buying in a store, like vitamins or whatever, interacting with the prescriptions that I was given, not even realizing that sometimes those things interact as well. But now I know to ask those questions about or to look at what are the interactions, what foods can I take not take with this? Or what can I not do? Can I be out in the sun. Just little, like I had to figure all that stuff out. I was like, oh, don’t do that again, Cheryl.

Jaclyn Duvall, MD:
It’s so important. We hear the word supplement, and we think natural. But I tell people, I hear the word supplement and I hear unregulated. And so can be lots of potential benefits, but if you’re on blood thinners or other medications, we need to make sure that safety is being checked.

So, treating migraine isn’t just about reacting in the moment. It’s important to communicate and to find a provider that you feel comfortable communicating with.

Cheryl McJoy:
And one of the things also is I had to learn that even if I wasn’t comfortable with the provider, I still needed to communicate what was best for me. Because I wasn’t going to always have a provider that I like or that I believed or that I thought had my best interest in mind. But this was what I had right now, and I needed help, and that was a hard thing for me. But after that, things started to get better.

Jaclyn Duvall, MD:
And because we have talked about with other patient advocates seeking that right provider, but I do think you hold a unique perspective. So, can you talk about that as a veteran?

Cheryl McJoy:
As a veteran, we’re not like, you don’t always get to choose which doctors you see. And you don’t always get to see sometimes the same doctor. You don’t always have that, what they call the continuity of care. And so, one of the things that I had to do is to advocate for myself, have my questions, have the important parts of my medical record with me, so that way I could give the doctor a quick history. And that has been instrumental in getting some of the treatment that I have, because I took responsibility, not thinking that it was the doctor’s responsibility to know my entire history. That’s on me.

Jaclyn Duvall, MD:
Yes, I love that we’re coming back to it’s my body. It’s not only my responsibility, but my decision. So, a theme throughout this. And so, another thing that we see is sometimes when you’ve found a treatment that’s working, accessing it isn’t always easy. So, can you talk about that and how you’ve navigated treatments?

Cheryl McJoy:
This is the bane of my existence. Well, for me, for one, I was moving quite a bit. And one location may not have access to a specific treatment. Like for instance, I was using a device that stimulated the vagus nerve, and someone else hadn’t heard it, like another place hadn’t heard about that. Or they was like, well, it’s not available. So now what do I do? That thing works for me. It’s like magic. I could see unicorns and fairies whenever I take this. It’s so good, right? And now you’re saying I can’t have it because it’s not available in your region. And then that’s when I learned oh you have patient advocates. So, finding out those little nuggets and being able to find the right person that can do that for me, that was one thing.

Jaclyn Duvall, MD:
How did you learn about that? I mean, did you research online? Did someone else tell you? How did you learn about patient advocates and access?

Cheryl McJoy:
Well, I’m a deep researcher. But then I just started talking to people. And once I started talking to people, and I made a decision that if you couldn’t help me, I was going to find someone who could. So, 100 nos to get that one yes. I knew I was worth it and that was what I took. I was worth asking the 100 questions. I don’t care how annoyed someone got, someone had the answer that I wanted and that I needed because I wanted to be better.

Jaclyn Duvall, MD:
I think that’s a common thing we’ve seen throughout this series and advocacy. And we use the term squeaky wheel at times, but it really is not settling and saying, I’m going to continue to push and to advocate for myself, for others as well.

Cheryl McJoy:
I just felt like I’m worth fighting for. I remember who I was. I remember the life that I had and that was worth fighting for. I had people who loved me. And even if I didn’t, I love me enough to fight for me.

Jaclyn Duvall, MD:
I love that. Well, it can be discouraging, and I find sometimes I may lose a patient after just the first visit if a treatment didn’t work. And so, you talked a bit about the side effect you had from a first treatment. Have you had other treatments with trial and error and how do you continue to push through and to still continue to seek treatment that works?

Cheryl McJoy:
I always come from the place that I love me enough. That and there are so many treatment options out there that something is going to work. I am worth fighting for. And coming to that conclusion and not settling for anything other than thinking about what kind of life I want to live. Once I realized that, I actually had a doctor, an older doctor, who told me that you have to be your own best advocate, you have to know you more than the doctor does. He was like, in this journey, that is the best answer. And he also told me, anytime you talk to a physician, ask them, would you recommend this course of treatment for your mother, for your wife or yourself? And if they hesitate, don’t do it.

Jaclyn Duvall, MD:
I love that.

Cheryl McJoy:
It was just that simple.

Jaclyn Duvall, MD:
I love that litmus test. I use it as a prescriber. I think, is this something I would do for my loved one as well. And I’ll give people both sides of that coin, kind of playing devil’s advocate of, well, there’s this and there’s this.

I do want to go back. You mentioned that sort of journaling for you was really helpful in tracking. Did any of that change treatment course or feedback that you would give to a doctor?

Cheryl McJoy:
It did because I, even though I don’t like to be wrong because I’m 100% always right, like I was born perfect and I was born right.

Jaclyn Duvall, MD:
I love it.

Cheryl McJoy:
But in the journaling, I discovered that there were some things that I was doing that was causing the migraine. And so, once I could remove me from the equation, the things that I’m doing, it’s best to have a collaborative relationship with your providers. Because collaboration is going to go a lot further in getting care for me than it is if I just go in there all mad and yelling at the doctor or whatever.

And that journaling allowed me to kind of see what was happening in my life. I was taking copious notes, and I had found other things, like yelling at the ocean or scheduling my temper tantrums so I didn’t have to have a temper tantrum with the doctor. When I have a doctor’s appointment, especially at the beginning of my treatment, having copious notes for the doctor because my mind wasn’t always thinking. So that way if they asked me a question, I could have it in front of me. I hope that answered your question.

Jaclyn Duvall, MD:
It does. And it can be hard in the moment to recall back. I know in my mind I think, okay, I have these three points I want to talk about. And then I leave the appointment, I go, I only asked one of those. And so, I do think having notes to come in and pausing and saying let me make sure I touched on everything. I will tell patients, if they have 25 different questions, we might need two separate appointments. We might need to kind of parcel that out and get to the big items at appointment one, look into others.

I’m also curious if you would share with your provider the triggers. Because as a provider, I have at times wrongfully assumed that it was our treatment that was effective and not that the patient identified their trigger because they didn’t share that with me. Did you share back with your provider?

Cheryl McJoy:
Oh yeah. I was the most vocal patient. They were going to get it all.

Jaclyn Duvall, MD:
They were going to know. But I do think that’s important because as a provider, then it allows me to start to say, well, wow, what impact do these lifestyle changes, modifications make? Should we dial back on the prescription medications and just focus on these?

Cheryl McJoy:
Right. Like in an example where I say like that medication, I set the dresser on fire, that was a stop taking it right now. But when I told the provider that, the provider wasn’t surprised that some people wake up in the middle of the night on this particular medication and they do just things like that. They weren’t surprised. If they had told me that in the beginning, I may have made a different decision.

Jaclyn Duvall, MD:
Absolutely.

Cheryl McJoy:
You know, even if it was only 10% of the patients, because everyone is different. This particular prescription, a lot of his patients were having success. I was that 10%.

Jaclyn Duvall, MD:
And I think it’s also important for patients to know some side effects that happen, your body acclimates to very quickly for many people. And so, if I can warn someone, hey, you’re likely to feel this in the first week or so. If you could push through that. Now for some you can’t. You’re going, no, this is not doable for me and my lifestyle.

Well, I’ve loved hearing your story. I love you bring so much joy into the migraine conversation. I wondered if you might have just anything else for our listeners.

Cheryl McJoy:
The one thing, that piece of advice that I would give, is to give yourself grace. Like this is not a journey where we can be so hard on ourselves. If you do something and you trigger your own migraine, laugh about it, move on. Just learn the lessons and find the joy in this journey. That’s the most difficult part. But once you can find the things that bring you joy, and you can start to give yourself some grace, find people who support you. And if you if the people in your life don’t support you, go online. There are lots of support groups online for whatever, for different communities. And those can be helpful as well. Fight for yourself. Like put your dukes up. Fight. Don’t let anybody tell you no. I don’t care who it is.

Jaclyn Duvall, MD:
And I think having that perseverance that you keep describing. And there will be bad days. I know you’ve been through those, but a forward stepping progression into that perseverance.

Well, I just want to thank you, Cheryl. This has been a wonderful discussion. I appreciate your insights and sharing your experience. So, thank you.

Cheryl McJoy:
Thank you, Jaclyn.

Jaclyn Duvall, MD:
Thank you for joining us. We hope this conversation helps you feel more informed, empowered, and confident in managing your headache or migraine. This episode is part of a Patient Series designed to help patients navigate diagnosis, treatment, and finding the right care for them. To find the full series, visit headaches.org. Thank you again for listening. Until next time.

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This episode of NHF Insights™ was supported by AbbVie, Lundbeck, and Pfizer. The content was developed independently by the NHF.

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