S2:Ep12 – Tips from Patients: Tracking Migraine Patterns & Triggers

TRANSCRIPT

Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you in part by our generous sponsor, Lilly.

Listen to four patient advocates talk about the pros and cons of tracking migraine patterns and triggers. You’ll learn tips for best practices, tracking apps that are available and what data may be important for your doctor to know. 

For more than 25 years, Lilly has been committed to helping people affected by headache, investigating more than a dozen different compounds for the treatment of migraine and cluster headache.

Molly O’Brien: Hello and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. In today’s episode, we’re talking all about tracking migraine patterns and triggers. Our guests are four patient advocates, Alicia Torborg, Paula Dumas, Jill Dehlin, and Erica Carrasco.

Ladies, thanks so much for joining us.

Alicia Torborg: Thank you, Molly.

Paula Dumas: Glad to be here.

Molly: Let’s talk a little bit about tracking migraine. Doctors oftentimes suggest this, but following through isn’t always necessarily the easiest thing. Do you all track your migraines, and if so, how?

Alicia: I do. I’ve tried a couple different apps, but I find when I am in a cycle with migraine, the last thing I want to do is look at my phone.

Jill, it was you who pointed out to me that it was when I was due for my next round of medication, that was the point in my cycle when I would typically get a migraine for a whole week. But I’ve tracked it for probably a year and a half, and I can see through there when I’ve gotten my Botox shots, when I get my monthly CGRP shot, and then what medications I take as an abortive. 

So at any time, I can tell my doctor, “I’ve had 15 this past month, and look at all that I’m doing,” or, “I’ve tried this new medication, and now I’m only having three, and they were mild.” So it’s really important to track it. But for me, I go old school, and I like to track it on paper.

Jill Dehlin: Me too.

Paula: It’s good to have a friend like Nurse Jill around to help you see that. But it is true. It makes sense that the preventive medications are going to build up and then they’re going to dip down, and in those build-up and dip-down phases, you might be a little bit more vulnerable. Is that what you found in your patterns?

Alicia: Yes, absolutely.

Jill: I experience the same thing, and because of Alicia, I asked my neurologist for the three shots at once every three months situation with my CGRP blocker. So I’m going to be doing that my next dose, and I’m really, like, fingers crossed that that’s going to be helping me, because I also have those peaks and valleys. 

And I think it’s important for women who are still menstruating to track their migraines that way too so they can identify whether or not they’re having menstrual migraines.

And sometimes people underestimate or overestimate the number of headache and migraine days they have. So if you are only experiencing 14 days or less of headache or migraine, you’re not eligible for things like Botox. So I think it’s really important for people, when they’re first experiencing migraines, to track how many headache and migraine days they have, because not only can they then get the better treatment, but they can check to see how efficacious or effective it is.

Paula: And if that wasn’t reason enough, insurance appeals are good for that, and it helps you get the best care. So I find that my memory would deceive me, and I would go in to see my doctor, and I’d try to estimate without having tracked what had happened in the previous three months. And I’m sure I was wrong. And when I had data on paper or in an app form that I could show and prove, “Okay, I missed this many days of work; I couldn’t go to these family functions on these days; I was working below my level of capacity or a lower productivity on these days,” it starts to help the physician understand, “Oh, it’s really having an impact on her life. We’d better do something.” Right?

So I love the potential of not just revealing patterns and things, as we’ve found, but also for making your case. That’s what tracking can do for you.

Alicia: And it also makes me think, What preventative measures can I take for that week leading up to that time where I know my migraines could be worse? So some of the neuromodulation devices can be preventative. So, I can’t believe I’m saying this, but I’m looking forward to the end of the month where I can see if it works. Tune in.

Erica Carrasco: I don’t always track. I didn’t start off tracking when I started having regular migraine attacks. I didn’t start tracking probably until a few years later. But I do use apps when I track, only because I like the reports it spits out. My doctor loves the report they spit out. It shows them the level of disability that I would have with each attack, and I like the rating scales and the different symptoms that you can kind of keep track of, and I don’t have to read so much afterwards.

But I don’t always track. So the reason for me is that what I found that when I was tracking every single day without fail for a long period of time, I noticed that I was concentrating on migraine 24/7. And so I do stop tracking for a while just kind of for mental clarity, for my own sanity. 

But when I do track it now, it’s because I have new symptoms or my symptoms have just ramped up all of a sudden. And so I’ll start tracking then and use that, like everyone else, to try to help figure out what’s going on, where are my stress levels, or am I eating something regularly. But normally I try to keep track of food at the same time as I’m keeping track of the migraine. So it’s not just migraine I’m tracking. I’m trying to track everything I’m eating, my level of stress, what’s going on in my life, because for me, stress is a big trigger, so.

Paula: Really well said.

Alicia: Migraine Trainer is one, and one of the characteristics I like about that is you can print up the report and just send it right to your doctor. So you can see weather and medications and how many. There’s a lot of information.

Erica: I use Migraine Buddy. I do like that it tracks the barometric pressure at the exact time that you press “I’m starting an attack.” That has helped a lot too.

Paula: I had actually invented a paper diary for Migraine Again in the early days that we offered to people as a download, and then when Curelator came out, I was patient zero. I was really excited about it, and it’s now called N1-Headache. But for me, it helped me isolate my triggers, and that was a game changer. And then when Migraine Buddy also came out and got better and better and better, I found that to be really valuable. 

But kind of like Erica, I don’t want to track all the time. I want to track when things change. And we’re all moms. We track how much food we have in the pantry. We track our bank balance. We track our kids’ grades. But why aren’t we tracking migraine? It has a much bigger impact on our quality of life and our income, so it’s worth doing.

Jill: I think all of us probably have every day revolving around trying to prevent or anticipating the next migraine. And it’s something that we don’t always consciously do, but you always have to stay hydrated. You always have to try to avoid your triggers. So it’s always in the back of your mind that you have to do these things.

But sometimes, as Erica said, you just have to make a decision to get on with your life and not focus so much on the pain and disability but on getting better and doing things that give you joy.

Molly: I know for me that tracking can add an extra pressure to me and add an extra stress in my life, so it’s a fine balance of making sure that I’m aware which days I’m having migraine and then not going overboard, kind of like a few of you have mentioned, that it shouldn’t be taking away from life. It should be adding value to your life. So I’ve been working on trying to find that balance and making sure I’m aware of what’s going on within my body, so I agree with all of you on that.

All right, let’s jump over to diet. And Erica, you mentioned you work on tracking migraine along with what you eat, and they kind of go hand in hand. Can you tell us a little bit more about that experience?

Erica: Yes, so I have been battling — I guess I’m considered prediabetic, and so I battle with sugar. Sugar is so awesome, but it also triggers migraine when I have too much. And so normally, lately, with everyone home, everybody wants snacks 24/7. “Let’s go to the grocery store. I need a snack.” And I’m like, “Well, get me this; get me that,” because I don’t really leave the house very often. So there’s been more sugar lately. 

And so I have been keeping an eye on the next day. I have an attack. What did I eat yesterday? Oh, it was sugar. And so I don’t have to track sugar any longer, but I did for a while when I was checking all my foods, and I realized that the higher-carb foods for me were becoming triggers. And I started to learn about food and what happens to a carbohydrate. Well, I learned that it turns into sugar, at least the bad carbs. So I switched to eating good carbs and did not have that problem.

So carbs aren’t out. I just have to eat the right ones. And that’s kind of what I’ve learned is how to cook food for myself. I have a cookbook, and I’ve tried some recipes from it, and it’s geared towards patients with migraine. I have a couple, actually. And so I’m finding that if I can just kind of stay away from certain things that might trigger migraine — but so far, for myself, it’s only sugar that I have found that has been a trigger for me, so thankfully that’s it. But I know a lot of people have food triggers, and that’s really difficult.

Jill: Early on in my migraine journey, I got so much bad advice from people about what could be a migraine trigger. And I went into it knowing that alcohol was huge trigger for me, not eating was a huge trigger for me, and MSG was a huge trigger for me. And so just to shut people up, basically, I went on an elimination diet. So I eliminated everything except for lamb and rice, and then gradually I would add something like corn or chocolate and then withdraw it and then see what happened, and then try it again, test it again. 

And you know what I found out? Nothing. I was more sensitive to those things that I already knew I was sensitive. But at least it gave me the power to say, “Look at. Gluten isn’t an issue for me. I can have chocolate. It’s not a problem.”

Alicia: I find when I try to go low carb, my migraines go up. It’s strange, but when I try to eat low carb, I eat healthy foods. Typically, they’re thought of as healthy foods. Yogurt and cheese. I do eat more meat. Eggs, nuts, seeds, dried fruit in your yogurt. But as soon as I start doing that, my headaches go up. So for me, it’s finding the balance. It’s finding the right balance.

And also I find — I think we’ve kind of said it before — that I could have a little bit of sleep deprivation and be fine, and then I could have a little bit of anxiety and be fine. But then all it would take is one last thing, and then my migraine cup overflows, and there you have it.

Erica: Yeah, your trigger threshold is just wide open at that point.

Jill: I heard somebody call that “stackable,” like the stress, food, water, and then all of a sudden your migraine brain just goes, “Okay, that’s it. I can’t take anymore of that nonsense.”

Erica: It’s like a mom hearing her kids yell her name fifty thousand times, like, “What?!”

Jill: “Mom, mom, mom.”

Paula: Yeah, it’s not going to get any better if you keep repeating it. 

I do think that there’s been way too much obsession on food triggers, the negative part, when food can be medicine, and food can help you fight migraine. So I’d rather flip it, and instead of dealing with all this potluck anxiety and going on gluten-free diets — I’ve tried gluten free, yeast free, sugar free, all these different funky diets. And it really comes back to a much simpler approach, which is you eat crap, you’re going to feel like crap. If you eat clean, you’re going to feel better. If you can learn to love to cook or cook and freeze ahead, if you’re a really busy person and you don’t have time to cook, those things are going to help us get to a healthier place with our bodies and with our brains. 

And in particular, if you understand the things that are evidence based, like magnesium and omega-3s and riboflavins and what foods you can find those in, and you steer your diet toward those foods that are right for you. I eat a ton of olive oil. Walnuts, I’m not triggered by, but that’s a good, healthy food. Blueberries, salmon, spinach, kale, all those things that are just good for you and packed with all of those nutrients make me at least feel empowered instead of afraid. And that locus of control helps.

Erica: I think what’s difficult for people with chronic migraine is that a lot of times, we’re seen as lazy. But it’s not lazy. It’s just we’re exhausted, because a migraine itself is like a workout, and so the next day or two, you’re exhausted. So you don’t want to cook for yourself, and a lot of times, it’s takeout or two-day-old leftovers or something from a box that’s a snack. And so most of the time, we’re eating unhealthy because we just don’t feel well enough to make something.

But I think that that’s where we have to learn how to find healthy snacks and find foods that are either easy to cook or, like you said, prepared ahead of time. I know for myself that I go and buy soups for when I don’t have anyone around who can help me make a dinner or a lunch. Usually, I’m home alone all day, so I’ll pop a soup on the stove or in the microwave if I don’t feel cooking is safe. And I’ll put a soup in the microwave. And I’ll try to go and buy the soups that are at least on the cleaner side rather than the bad stuff.

But that’s what makes it difficult is when you can’t help yourself, and you’re trying to eat something, and it’s a battle.

Jill: I heard a physician at a conference say one time that sometimes her patients would get so anxious about what they were eating that if they just incidentally happened to have blueberries and then the next day they had a migraine, they would eliminate blueberries. And pretty soon they were down to just a very few things that they could eat when perhaps those things weren’t triggers for them at all. Maybe it was something else that was triggering. Maybe they just got a migraine that day for no reason at all. It doesn’t always have to be because of food.

Molly: I find it really interesting to hear what people’s triggers are. The education about food and diet over the years have changed. I think we were adding it up, Alicia, before we got started here — over 140 years of migraine experience between all of us, right? So I think it is really valuable to take into your own personal account how diet plays a role in your life. 

I remember getting that list, right, when I was probably five, six years old, and it said, “Don’t eat peanut butter. Don’t eat chocolate. Don’t have piza. Don’t have this. Don’t have that.” When you’re a kid, that isn’t helpful at all, besides, like you were saying, causing some anxiety. So I think the education and how we all perceive things in our own body makes a big difference. 

I also thought it was interesting that some of you said that carbs can be triggers or too many carbs, because I find when I’m in the middle of an attack or starting out, I need carbs. That’s what I’m craving. You try to give me a salad, I’m probably going to throw up. So give me some crackers or some pasta or something like that. That’s the only thing that I can tolerate.

So I find that really interesting, just how diet can affect all of us differently, and it’s so cool to think about. And, Paula, I loved your idea of eating to empower and to feel better. So I do think that’s really valuable. Hopefully, some folks at home can take something away from that.

Molly: And that wraps up this episode of Spotlight on Migraine. I’d like to thank all of our guests for joining us today, and for all of our listeners, I’d like to thank you as well. Until next time, I’m Molly O’Brien.

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Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

This podcast is sponsored in part by Eli Lilly and Co.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.