S2:Ep10 – Tips from Patients: Products, Lifestyle and Treatments

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.

Join us for a candid conversation with four patient advocates as they discuss how becoming more educated about their disease has been an integral part of their migraine journey. They also explain their personal experiences with managing migraine through medication, neuromodulation, exercise, psychotherapy and more.

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. Today we’re getting an inside look at migraine from the patient perspective. You’re going to hear from four amazing women who all have migraine and are migraine advocates.

And Alicia, the executive director for AMD, had this idea just after chatting with a couple friends. Alicia, do you want to tell us how this all got started?

Alicia Torborg: Sure, thank you, Molly. So there were three of us on the phone. We had known each other for quite some time. We were on a Zoom call, and before we knew it, we were all sharing. “Have you tried this? What about this? Have you…?” And it was so informative. For people who’ve had migraine for 30 years, you’d think that we know everything there is to know based on what we do for a living and the experience we’ve had. But it was so enjoyable, just having those honest conversations with these friends, that I said, “I really want to do it and share it more broadly with people.”

Molly: And that’s what we’re shooting for today, to have just an honest and open conversation with migraine patients and advocates and hear about their experiences, and hopefully, you can learn a little bit from them. So I’m going to have these four women introduce themselves.

Alicia, let’s start off with you.

Alicia: So, as Molly said, I’m the executive director for the Association of Migraine Disorders, and I’ve also had migraine for over 30 years.

Jill Dehlin: My name’s Jill Dehlin. I am an RN and a health educator. I am on the boards of the National Headache Foundation and the Alliance for Headache Disorders Advocacy and CHAMP, and I got involved with advocacy in about 2011. I’ve had migraine for about 32 years.

Paula Dumas: I’m Paula Dumas, and I am the producer and host of the Migraine World Summit and the founder of MigraineAgain.com. I’m also an editor at large for Everyday Health, and I have had migraine for over 30 years and went from chronic to episodic again, so glad to be here.

Erica Carrasco: Hi, I’m Erica Carrasco. I am a blogger with Achy Smile. I also run Achy Smile Shop. I’m the director of marketing for Chronic Migraine Awareness, Inc., and I partner with other non-profits like Shades for Migraine and Miles for Migraine.

Molly: So grateful that you’re going to share with us. Today we’re going to be talking about as many things as possible, anything from triggers to treatments. So let’s go ahead and get started.

Alicia, you’ve used a lot of different medications, like many of us have, over the course of your history of migraine. Have any of those medications been game changers for you?

Alicia: Yes. Most recently, it’s been the CGRP blockers. It changed me. I went from having a migraine every day for five months, every single day, and now I track them. I have several a month. Sometimes I could still go a week with having a constant migraine for a week, but the severity is less, and the actual days that I have them are fewer. It’s really made a big difference for me.

Molly: And I think that’s so important, is just being able to live well with your migraine and seeing an impact. And Jill, it’s my understanding you’ve also found success with CGRP blockers.

Jill: I have. I started taking a CGRP blocker in November of 2018, and I saw my migraine days go from about 17 to 20 down to about 7 per month. That was a big game changer for me.

But another thing that was a game changer for me was when I was hospitalized for migraine, and I started getting blocks and cervical rhizotomies, as well as occipital blocks, and that really helped to tame things down. And, as Alicia said, it not only decreases the frequency, but also the severity of a migraine. I might still have a low-level migraine on a CGRP blocker, but I’m still pretty functional.

Molly: And being able to function is a huge part of it. Erica, any game-changer treatments that you’ve had?

Erica: Definitely the CGRPs. I started in July 2018, and it has changed — I was every day, and I was pretty much bedbound almost every single day. I probably had maybe two days a month where I could be functional and active in my life. Once I started the CGRPs, I started noticing that my lower-level — I say lower level, but my everyday headache went completely away.

I had new daily persistent headache. I still have it. Without the CGRPs, they come back. But because I was able to control those, my hemiplegic migraine attacks just went way down. And so now I don’t have hemiplegic migraines every single day like I did before.

Molly: Wow, what a big impact there. And, Paula, how about you? Have you had any game-changer experiences with medicine or with lifestyle changes?

Paula: It’s so encouraging for me to hear about the impact that CGRPs are having on people’s lives. That has not been the case for me because by the time CGRPs came out, I was in a pretty good place. For me — history lesson — long before we had triptans, we had things like ergotamines and certain formulations that didn’t work really well. So when triptans came out and I was in the height of my career, they really allowed me to function. So I think acute medications can also be game changers for people.

And then I took too many because at the time, we didn’t know that that was a problem. And then that proved to be an issue, as I turned into medication overuse with triptans. So it’s important to work with your doctor on these things.

I think for me, lifestyle changes and becoming the CEO of my own health and kind of an attitudinal shift: instead of relying upon my physicians to come in and fix me and solve me or any single medication to be the be-all and end-all game changer, really becoming the CEO of my own health and taking charge of that and focusing on it has made the biggest difference.

Molly: I love that statement — taking charge and being the CEO of your own health. What an empowering phrase, and I’m probably going to have to steal that from you.

So, Paula, let’s stay with you. You just talked a little bit about some medications that helped you as well as lifestyle changes. Can you talk to us about some strategies that help you deal with the pain and going through migraine?

Paula: Sure. Adding to the lifestyle changes, specifically, there is an acronym called SEEDS, which I have found to be very useful, which a couple of the S’s are in there, like stress management and sleep. Sleep has been huge for me, trying to manage that more effectively. Committing to exercise — the evidence on exercise is so strong. If you’re able to get out and move, even in the smallest amount, that can really be almost as effective as certain preventive medications. So I think investing more in that has been very positive.

Education for me has been the biggest game changer of all. Just by virtue of what I do, by interviewing experts and reporting and developing content all the time to educate others, I have learned so much. I learn every single interview I do. And in doing that, I’ve been able to apply what I’ve learned. So it kind of turbocharges whatever you’re taking, whatever you’re doing. Education I think is the best prescription.

Molly: And Jill, you’ve found some techniques that help you cope with migraine as well.

Jill: I’d like to just reiterate Paula’s point that education is so important. It wasn’t until I started learning more about migraine that I started being able to be the CEO of my own healthcare and decided that migraine wasn’t going to be the boss of me. So I just kept trying and trying until I found something, and probably the biggest thing that I did for my own education was to go to the American Headache Society meetings and listen to those conferences. Because I’m an RN, I could understand much of what they said — not everything — but that was really helpful.

Paula: I needed you sitting next to me to decode all the medical words, because that’s been the biggest problem for me. I skipped biology in seventh grade, and I’m missing a few key concepts that I needed, so yeah.

Jill: But some other things — I also agree that exercise is a huge thing. If I don’t sleep, that is a really big issue for me. And for example, last night, we had a horrible thunderstorm, and it woke me up. So if I don’t get enough rest, then that’s trouble. And if I’m, let’s say, flying over several time zones, the flying is a trigger for me, and so is the time change. So those are problems.

But some of the things that I do to alleviate that is using things like essential oils. If I’m sitting next to somebody who doesn’t have an odor that I like — and that can be something that they think smells good or something like age-old cigarette smoke on their clothes — so I always have little essential oils that I can put under my nose and help with that. And I always have earplugs and sunglasses with me to help.

Molly: Erica, how about you? Do you have any strategies or methods that you use to help you cope with migraine?

Erica: I do. Back when I went to Mayo Clinic to try to figure out my migraine — because I went through several doctors trying to get a diagnosis — and when I went there, they put me through biofeedback. And they hooked me up to this machine, and they had me breathing different lengths — so four seconds, five seconds, two seconds — to try to determine what rate would slow my heart rate down.

And so we found the right numbers. I downloaded an app to my phone. And with that app, I just plugged in the numbers, and now I use that when I am having a lot of stress or anxiety. And I know those are triggers for me, so I use that breathing technique to kind of just bring me back down to a baseline so that I can then start to just try to calm my entire central nervous system back down. And it helps a lot.

Therapy is another thing that I do. I try to go every week. Now with all the shutdowns, that’s been really difficult, and I haven’t been able to see my therapist for over a month now, but I usually go once a week. And it’s more to learn how to live with chronic migraine. I haven’t been able to get back to episodic. So living with chronic migraine, it’s very depressing for a lot of us, and for myself, it’s for sure. And I try to do things to keep myself upbeat and outgoing and smiling all the time, but the therapy has been a game changer.

Jill: I’ll bet a lot of us in this call have done things like visual imagery and biofeedback and things like that.

Paula: Yeah, I think biofeedback — once you begin to learn it, and you learn breathing techniques, and you learn self-soothing and calming behaviors like that — it can be terrific. For me, getting into a hot bath or painting, they just take me to a different place mentally, and that’s sometimes where I need to go when I’m in pain, especially migraine pain or other kinds of pain. I have a menu of pain that I experience.

Erica: Exactly.

Molly: Let’s talk a little bit about those non-pharmaceutical tools that you all use to help you deal with migraine when you’re in an attack or you think one might be coming on. Alicia, let’s start with you on this one.

Alicia: So for me, if I can force myself to get some exercise, that is usually my best resolution. And it’s hard. There are times that I’m laying in bed miserable, and it’s hard to make yourself get up and go for a walk. But honestly, for me, it’s remarkable. And even if it gives me relief for that half hour, 15 minutes, or an hour that I’m walking, I’ll take it. And oftentimes, it’ll help beyond that as well.

I’ve tried neuromodulation. There are two different devices that I’ve used. One is Nerivio, one is GammaCore, and I have had some relief with those two. I find that there’s not one silver bullet. It’s not just a triptan or just a ditan or a gepant or just CGRP. I mean, there’s many, but it’s a whole gamut of tools to use. So I think neuromodulation helps. Sunglasses help. I’ve tried a few different brands, and I think they can really help, especially when you have to be on the computer under lights.

Molly: And Jill, let’s pop over to you. You mentioned essential oils can help. What other tools do you use that are non-pharmaceutical to help with migraine?

Jill: We’ve already talked about a lot of them with the biofeedback and visual imagery. I mean, I can go to my happy place in seconds flat. And this is a tool I learned in therapy with my migraine treatment, and I use it all the time when I’m not only in pain with a migraine, but if I’m in the MRI tube or I’m at the dentist office, post-op pain, those kinds of things. That visual imagery and breathing exercises and stress reduction — those have really made a big, big difference for me.

Paula: And you know what, Jill? You just reminded me of something. There’s an app that I use. I think the name of it is Calm, and I’ve used it to help me sleep. My mother always called them the chattering monkeys, when you can’t go to sleep, and you’re just thinking, “Oh, I have to do this and this and this.” But they do storytelling, but the storytelling is so descriptive that your mind can’t help but picturing what the story they’re telling you. So that also does take my mind off it.

Paula: Calm is great. Audiobooks are great. I’m an Audible subscriber, and the better the narrator and the more interesting the story, the longer I’ll stick with it. And then I’ll wake up at 2 o’clock in the morning and go, “Oh, my gosh! I have to go back a few chapters because I fell asleep.” But it works.

Erica: My husband and I sleep with Calm every night, and we play the stories, and my kids do the same. Actually, my son has migraine as well, and so does my daughter. And my son, he’ll listen to classical music every night.

Paula: And I have to give a shoutout for the one thing that I would not leave home without. So we all travel, and we connect with each other in other places, and I know that nobody takes migraine laying down. But wearable ice packs — as Vanilla Ice said, “Ice, ice, baby.” With wearable ice packs, I thought my life had changed. Those are fantastic, so everyone should own one of those along with some light-sensitivity glasses. Those would be two things I would never leave home without.

And I think the devices are a really exciting development for all of us, especially the wearable devices. Those are pretty cool, and they can be very helpful to abort an attack as well as for prevention.

Jill: The Cefaly’s been really helpful for me for preventions and for acute attacks, and it helps make me drowsy. So if I’m feeling really insomniac, then that’ll help me. It’ll buzz me to sleep.

Erica: One thing that I never leave home without is my electrolyte tablets. I have those wafers that you can just drop in a water bottle, and it fills it with electrolytes. One of my triggers is dehydration, so that’s a lifesaver too, along with the glasses.

Paula: That’s a great tip, and hydration is critical. I used to think that I drank enough water, and then I was studying hydration a little bit, and I thought what foods add hydration, what dehydrates you. And I measured how much water I was drinking, and I was shocked. And so then I went through an exercise where I would fill up a couple pitchers of water, which was half of my weight in ounces, I think it was, a couple of pitchers. And I would force myself to go through those. So I had to retrain myself on how much water I should drink.

Molly: I love all these ideas and strategies here. And some tips, some things that we hang onto are so simple, like an ice pack, which I think is incredible and can really help. So hearing these stories can really make a big difference.

And you guys had all mentioned too that new medications like CGRP blockers had helped you, and again, that’s a new medication. And now that we’re in this time of migraine, it seems like there’s new developments and changes, giving us all a little bit of hope down the road. So it is an exciting time in migraine.

I’d like to hear from each of you what you’re looking forward to or what you’d like to try — these new developments with migraine treatment.

Paula: To me, I think, again, having gotten through my — crawled out of chronic migraine and being in episode migraine right now, I am most excited by the three new acute medications that have come out this year. They’re very promising for people and safe, with not a lot of side effects. People who have a history of heart problems or a history of medication overuse, it’s a whole new day. Or if they’ve failed triptans, which a number of people have failed triptans or just don’t feel right taking them, it’s a whole new day. So those three new medications and a new device that have come out, and I’ve tried a couple with good results.

Alicia: I would echo that. I’ve tried two of the new gepants that have come out, and I’ve had really promising results with it, with minimal, if any, side effects. So that is so happy for me to say.

Jill: I’ve got atrial fibrillation, so I cannot use an NSAID anymore for my migraine attacks. And when the gepants and the ditans came out, it was really like a godsend for me. Plus even when I could take triptans, they didn’t really work for me either.

But what I am most looking forward to is some kind of a precision medicine coming forward where we’re not using this guinea-pig, scattershot approach to finding a treatment for people. Nobody likes being a guinea pig and trying out a hundred different things to see what works. So I think precision medicine is going to be the key.

Erica: I feel like I was one of those guinea pigs, Jill, with the triptans. The last two times that I tried to take them, I was actually hospitalized for a week with severe hemiplegic-migraine symptoms. It took me about a couple of months to recover from the hemiplegic migraine attack. I had constant aphasia. I could hardly walk. It was horrible.

So now with the gepant that I’m trying now, it’s — I’m kind of in shock because every medication I’ve ever tried — and I feel like I’ve tried everything out there — my doctor says the same: “You’ve tried everything.” With the new gepant, I can take it, and within two hours, my symptoms — including hemiplegic migraine symptoms — are almost completely gone. And that is kind of unheard of for me over the last 20 years.

So I’m really excited, and both of my kids — they’re both young adults; they’re over 18 — but they haven’t tried it yet. And so I’m kind of allowing myself to be the guinea pig before I tell them to go try it. But I’m just like, “Go try it. You’ll never know if you don’t, so.”

Paula: You know what I have to say? First of all, I’m so glad that they’re working for you, Erica. It makes my heart happy for you.

Erica: Thank you.

Paula: But what I find is so many people just don’t know this. I mean, we do. It’s because we do what we do. But I look at friends that are outside of our community. They don’t know about these medications, so I think —

Paula: Well, your doctors don’t necessarily know about them either. I mean, the companies are doing the best job that they can to get word out, but so many people see either a GP or a neurologist. And I asked my GP, for example, and he had no idea what I was talking about. And I said, “Well, I’ll send you the FDA label, and you can study it; and I’ll send you an article from MigraineAgain, and you can check it out; and I’ll send you an interview from Migraine World Summit so you can hear from the experts what they think about these new therapies, because they’re not getting that education when they go to their medical conferences.

So that’s part of the thing that we need to work together as advocates to help change, to help educate the nurses and the GPs and the medical students and the neurologists and the OB-GYNs and all the other people besides the headache specialists, who clearly know what’s going on and what’s available.

Jill: And we also have to educate not only people with migraine, but we also have to educate the policymakers who are making laws and funding research, and that’s something that the Alliance for Headache Disorders Advocacy does that I’m really proud of.

Molly: Awesome job. I love hearing all of that.

Thank you all for joining us. It’s such a pleasure to meet all of you, and you’re all so inspiring. I can’t tell you how — when you guys emailed me all of your stuff, I just read, and I was in tears. And I just think all of your stories are so meaningful, so I really appreciate you all sharing them.

Alicia: This was great. Thank you, everyone, very much.

Jill: Thanks for asking me.

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.