Finding Support Along Your Chronic Migraine Journey: A Conversation With Meg Donnelly

Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. It could come while you're out with friends, running an important meeting or just with your family at home, a spiraling thought that leaves you feeling helpless. That's why you have your self-care, your coping strategies, that's why you have us. I'm Nora McInerny and this is The Head Start: Embracing the Journey, a podcast where we'll be taking all those things you usually save for your friend group out into the open so we can all find a bit of optimism. I'll definitely be sharing my experiences and vulnerabilities and trying to pick up some things along the way to work into my own routine but this show isn't about me, it's about life and, wow, that just made it sound very deep and I guess it will be deep but it won't be heavy.

For those battling Chronic Migraine, these conversations are going to be even more helpful and relatable so definitely stick around. This show is brought to you in partnership with AbbVie so, first, let's hear some important safety information and stay tuned to the end of the podcast for more.

Speaker 1:

Indication:  BOTOX^® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.

 

It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).

 

Important Safety Information: BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

Please see Important Safety Information, including Boxed Warning, within this podcast or on the website below.

Nora McInerny:

Nobody gets through this world without help, without support from somebody outside of themselves whether that's an online community, your family, your friends, even your medical team. Support can mean so many things to so many different people but it's very hard to ask for help and I do believe that to be a somewhat universal truth. It can be very hard to be honest with ourselves and the people around us about how we are really doing and what we really need because that honesty makes our experience real and we don't always love the reality that we're living in, we don't always want the reality that we're living in. And there is also a very real risk that, if we ask for help, we won't get it. If we tell the truth about how we're struggling, that might be the only thing that people see about us, that might eclipse our identity, how we want to be perceived, how we perceive ourselves.

And each of our guests on this season has had their own version of what a support system looks like. Art, hobbies, friendships, the migraine community, their medical teams. Everyone deserves a support system that is willing to meet them where they are, it kills me that not everyone has that but today's guest does. Meg Donnelly is like a lot of us, Meg wants to live her life. Meg has big dreams and big plans, she is a cinematographer who works on everything from movies to TV shows to her own creative projects and she is the woman behind the Instagram account Heal with Meg. Yes, she still made time to talk with me and Meg's story about how her ambition and drive and love for life collided with the very real limitations and setbacks of her Chronic Migraine journey is really beautiful and really powerful. She cried, I cried, you might also cry.

My conversation with Meg Donnelly is coming up in just a bit but, first, we have a little chat with my buddy Dr. Rhyne. Dr. Rhyne, so good to talk to you as always.

Dr. Rhyne:

You too.

Nora McInerny:

So, Dr. Rhyne, I have a specific topic for this episode. I'd like to talk about how you discuss treatment plans with patients and how you talk about their unique experiences with migraine attacks.

Dr. Rhyne:

Nora, it's the most important conversation in the room. I think one of the things that I try to share with patients right away is that their story is the thing that matters the most. It's not what Dr. Rhyne thinks we're going to do next, it's not the medication education, all those things are really critical but the single most important thing is that individual experience. So, that's where you start, you got to get to know the person sitting across the table from you, you can't do a cookie cutter one size fits all approach. There isn't a single answer that you have to learn about each individual patient, what their triggers are, for some it's visual, for some it's auditory but those experiences, not only come as an answer to a question, hey, what does it feel like when you get a migraine attack, but also how does it impact your life, what's it doing for your education, your relationships with your friends, coworkers, family. All of those things are equally important to understanding what's going on even outside of the symptom presentation.

Nora McInerny:

You have something that you advise your patients to do which is the same thing that my therapist told me to do.

Dr. Rhyne:

I know everybody can't see us, she is holding up her journal, everybody. Yeah, I think that, sometimes, because the weight of these ideas can be really overwhelming, your frame of mind while you're trying to capture the weight of these ideas can be really overwhelming and the distance between when I get the chance to sit down with patients and have a conversation can be far. And so, having them journal how often are you having attacks, what are your migraine attacks feeling like, what symptoms, what triggers, is there a particular piece of this puzzle that seems to be more of an issue or less of an issue, what did you do that made it worse or made it better. We want to get a really clear picture and then we can sit down and have an honest conversation about what their experience is and then we can start talking about their treatment plan.

Nora McInerny:

When you're talking about treatment plans, I've also heard you use the words acute and preventive. Can you help us understand the difference between those two things?

Dr. Rhyne:

Absolutely, I would love to. So, when we think about it, acute medications are those that we take, they can be injectable, they can be oral, they can be intranasal and these are medications that we take to stop the headache right now. Probably the closest thing that people might be familiar with are over-the-counter medications that they might pick up at their pharmacy, pain relievers that they would get that way would be considered acute treatments that you would take right now. This doesn't keep the headache from happening, it's built to stop the headache that's happening right now. Where preventive medications are ones that are built to, in terms of migraine attacks, make those migraine attacks less frequent, so that's the goal with the preventive side. And for Chronic Migraine, you may have both to treat it.

Nora McInerny:

Okay, got it. So, when it comes to considering treatment, can you tell us about BOTOX for Chronic Migraine as a preventive treatment option?

Dr. Rhyne:

BOTOX prevents headaches in adults with Chronic Migraine, 15 or more headache days per month each lasting for four or more hours, it's not approved for adults with migraine who have 14 or fewer headache days per month. BOTOX is the number one prescribed branded Chronic Migraine treatment based on the claims data from October 2010 to March 2022. Over a million patients have been treated with BOTOX for Chronic Migraine, it is a tool that I use in appropriate patients with Chronic Migraine who feel like and look like this would be an option for them. This medication is approved since 2010 for the preventive treatment of Chronic Migraine.

Nora McInerny:

So, what can someone expect when they're receiving BOTOX for Chronic Migraine treatment? Walk us through the procedure and what it's like.

Dr. Rhyne:

So, the first thing that we need to understand when it comes to treating Chronic Migraine with BOTOX is there is a set injection paradigm. You're seated in a clinic setting or maybe a procedural suite setting is where you would be, this isn't surgery, there's no anesthesia, we use alcohol, some use Betadine but we sterilize the skin in the areas that we're going to inject. BOTOX is injected in 31 shallow sites into seven muscle groups that the FDA approved in the head and neck areas. You start with two treatments 12 weeks apart and continue with treatment every 12 weeks, this is something that we can do four times a year.

Nora McInerny:

And how soon can people feel the difference? How soon does it take for them to feel results?

Dr. Rhyne:

Some patients may feel results as soon as four weeks with full effects at six months. BOTOX prevents, on average, eight to nine headache days and probable migraine days a month versus six to seven for placebo.

Nora McInerny:

Okay. Is there any important safety information that listeners should know about BOTOX for Chronic Migraine?

Dr. Rhyne:

Effects of BOTOX may spread hours to weeks after injection causing serious symptoms. Alert your doctor right away as difficulty swallowing, speaking, breathing, eye problems or muscle weakness can be signs of a life-threatening condition. Patients with these conditions before injection are at the highest risk. Side effects may include allergic reactions, neck and injection site pain, fatigue and headache. Allergic reactions can include rash, welts, asthma symptoms and dizziness. Don't receive BOTOX if there's a skin infection, tell your doctor your medical history. Muscle or nerve conditions including ALS, which is Lou Gehrig's disease, myasthenia gravis or Lambert-Eaton Syndrome and medications including botulinum toxins as these may increase the risk of serious side effects.

It's important for you to talk to your doctor or headache specialist to see if BOTOX is right for you. Listeners can find more important safety information throughout this episode and at the URL to the full product information including boxed warning on our show description.

Nora McInerny:

Dr. Rhyne, thank you so much for being here. I love our time together and I know that our listeners do too.

Dr. Rhyne:

Thanks, Nora.

Nora McInerny:

Today's guest is Meg Donnelly. Meg is a BOTOX for Chronic Migraine patient so stick around. All right. Hi, Meg.

Meg Donnelly:

Hi.

Nora McInerny:

I love seeing into someone else's home and I love it even more when it's a real home. There's a cat.

Meg Donnelly:

There's a cat, yeah. She's actually sitting on a box of diapers.

Nora McInerny:

Oh, good for her. Oh, good for her.

Meg Donnelly:

Yeah, yeah.

Nora McInerny:

And that's why you don't buy cat toys and cat furniture-

Meg Donnelly:

Right, she's been there all day.

Nora McInerny:

... because they're happy with a random box. So, we like to start off with the most hard hitting and important questions right off the bat. Meg, what is your favorite movie?

Meg Donnelly:

Oh, my favorite movie is ... I always say top three but let me try to narrow it down a lot.

Nora McInerny:

I'll accept a top three.

Meg Donnelly:

Okay, because I usually like-

Nora McInerny:

I would love a top three, yeah.

Meg Donnelly:

... different genres.

Nora McInerny:

Yeah.

Meg Donnelly:

So, Amelie is one of my favorites, it's a beautiful film and quirky and all the things and I saw it at a great time in my life when I was deciding to get into film. Another one is Almost Famous.

Nora McInerny:

Oh, mm-hmm.

Meg Donnelly:

I just love it the-

Nora McInerny:

Now, you're two for two with just excellent picks, okay.

Meg Donnelly:

Yeah. Love that time period and the music and characters is so interesting and it's funny too. And one I put on for fun is Billy Madison.

Nora McInerny:

Oh, now you're speaking my language. Nothing has shaped my personality more than the stupid comedies of the late '90s.

Meg Donnelly:

I agree.

Nora McInerny:

Amelie is also an excellent movie but there is a very serious effect that I don't hear people talking about enough which is you will believe that you can have bangs when you see that movie. You will believe-

Meg Donnelly:

Yes. Yeah, I probably did actually because-

Nora McInerny:

... that you are a quirky French girl who can wear a baby bang and that's a small percentage of our population who actually can wear those bangs.

Meg Donnelly:

Yes, right.

Nora McInerny:

So, Meg, let's talk migraine. Where does your Chronic Migraine experience start for you?

Meg Donnelly:

So, actually, migraine started early in my life and then about five years ago is when my migraine attacks became chronic and changed a lot. Yeah, the fall of 2018 for me, my migraine attacks just started becoming really frequent and I was also trying to live my life to the fullest and never take a break and relax. So, it just feels like, all of a sudden, they were so frequent and I ended up being hospitalized and that's when I was technically diagnosed with Chronic Migraine.

Nora McInerny:

Wow, wow. You mentioned you're also a person who has drive and has passion for life and your work and, when people say listen to your body, at different points in my life, even without Chronic Migraine, I've felt like, "What? What do you mean? My body?"

Meg Donnelly:

Right. What does that look like?

Nora McInerny:

Yeah, my body has just got to go. It's got to get up and do what my brain wants it to do.

Meg Donnelly:

Exactly. That's how I have always been, that's how I am now, it's something I always work on. But looking back, my neurologist did prescribe a preventative but I think that's a lot of the battle that we have in the community is not enough knowledge about the different medicines.

Nora McInerny:

Yeah, until there's no denying it because you are laid up in the hospital and now you got to listen to your body.

Meg Donnelly:

Exactly. For me, it took until it substantially interfered with my life. It always did interfere in a way but I could lay down in a dark room, take medicine, use ice, next morning, be back at it and feel like that meant it wasn't interfering even though it was. But then it got to a point where that wasn't working anymore as well as it was just so frequent that I was seeking help.

Nora McInerny:

Yeah. There's a lot to juggle and balance in the situation that you are in. As you are learning to navigate your life living with these migraine attacks, what have been some of your fears?

Meg Donnelly:

Yeah, that's a big question for me because fear is a big emotion and one that I have to work through a lot, honestly. I might get a little emotional here and there.

Nora McInerny:

Yeah.

Meg Donnelly:

Well, I think, before I was diagnosed with Chronic Migraine, the fear was that I was going to be missing out on things because of my personality, wanting to be involved in everything and very social and very driven at work and in my creative life. And so, there was definitely a fear of this attack is going to stop me from doing X, Y and Z and I think that is why I did what I needed to do and then moved on. I had a very, very real fear and that's what I get emotional about because it was real and it took a long time. And so, I had to really work on that fear and that's hard. That was the fear was that this particular migraine that wasn't ending and wasn't breaking as we call it and, all of a sudden, it was this fear that this is never going to end as well as that maybe something else was wrong. And so, I will work on that fear and say it out loud and write it down and whatever it takes. So, now, the fear is still there but it's not quite as big, it's not quite as scary.

Nora McInerny:

It makes so much sense that you would be emotional about this because you mentioned some of these fears were real, right? Some of these fears were real and there were-

Meg Donnelly:

Right, it was happening.

Nora McInerny:

It was happening and there were things that you had to step back from. Can you tell us about that as well?

Meg Donnelly:

Yeah, absolutely. So, like I said, I was going through life at full force and enjoying life and a migraine attack would hit and I would deal with it in a cave and then I would go back at it. And at a certain point, my migraine attacks, they were super frequent but I kept living life anyway. I dance as a hobby, I was rehearsing and performing and a full-time job and just kept going forward and then, when all of that ended, realized I need help here. And it was Thanksgiving so it was the first time I missed out on flying home for the holidays and so that mood drop that I hadn't experienced before. Yeah, at that time, my life felt like it had been turned upside down, it also caused me to not really share it with anyone.

My family, my immediate family knew and, of course, my partner at the time but I didn't share it with even close friends because it was something I was just wanting to deal with and then move on. And it took me a while to start admitting that I needed help from a social aspect and, at that point, it was just could someone come over for an hour. I went on short-term disability leave and I actually went and spent time with my parents in Arizona, you start to learn what you can do, what you can't do. So, I started adding little things back into my life so that it wasn't my only identity, that my Chronic Migraine wasn't my only identity because it had become so much of it.

Nora McInerny:

Yeah, I'm glad you shared all that, that is a really important part of the story. And you mentioned keeping that to yourself and wanting to figure that out yourself and deal with it yourself. Talk to me about opening up and building that support system for yourself.

Meg Donnelly:

Yeah, it took me a while. It felt like it was admitting vulnerability even though it's not but, at the time, it felt like I'm asking for help or that something is wrong with me. And also, migraine isn't well understood so, when you tell someone you have migraine, they may slightly understand it but that was-

Nora McInerny:

They say don't think about it, just don't think about it.

Meg Donnelly:

Right, right. I'm a really social person so, all of a sudden, when I did become very introverted, it was unusual for me. I had been searching for other people like me, I wasn't really involved at all in the migraine community, I didn't feel the need to or know it existed probably to be honest. That's the amazing thing about our world today is we can find people through social media, through Facebook, through Instagram, through articles and I think this is important, when people find communities, you really do still have to trust yourself and your situation and know that it's different and it's your own. So, find similarities but also find what's different.

Nora McInerny:

Yeah. So, building this support system, tell me about what has it done for your relationships? I'm thinking specifically about the relationship that you have with your dad.

Meg Donnelly:

Yes, yeah. So, that one I might get emotional about too just because I love him so. So, I've always had a good relationship with my dad but I was in Chicago and he lived in Arizona and I was really busy. I was mid-30s, I was living my life and then, when Chronic Migraine hit and I wasn't telling anyone, I was very much telling my dad. Sorry. He's a great guy. Yeah, he was calling me every day, he would FaceTime, he would send me music, just send me ideas on how to be in the moment. And my dad doesn't have migraine but he's had health situations his whole life so it was someone I could identify with and share a lot of that fear or vulnerability. So, I went and spent a month with my dad in Arizona and just he was such a huge part of my journey. Holding my hand, literally, he would lay next to me just with it, with me in it, really in it.

And then I flew back to Chicago and, actually, he came there and he stayed with me in Chicago for two weeks. And I remembered we would just be sitting on the couch and my whole life was now about migraine and he was able to help me take breaks from it and watch silly shows or talk about the weather, which sounds silly, but, Chicago, so it was very prevalent.

Nora McInerny:

Look, I'm from the Midwest, we love talking about weather. Okay?

Meg Donnelly:

Yes.

Nora McInerny:

And I love your dad for this, I really do. I have goosebumps thinking about that, that's so loving and wonderful. And to have somebody in your life who knows that they can't fix it but they will sit with you in it, is really, really powerful and I wish that for everyone. It's very hard to ask for help, that is, I believe, a universal truth. It is very hard to ask for help.

Meg Donnelly:

Mm-hmm, yeah, exactly. And just, since then, I would say our relationship is just really deep and connected and honest.

Nora McInerny:

Yeah. We're going to switch emotional gears here, I want to talk about Chronic Migraine treatment. You mentioned a lot of confusing or contradictory or intimidating feelings about different kinds of treatment. There's also these huge wait times between when you see a doctor and then live with this and then go back to see a doctor. So, how did you work with your doctor to find a treatment plan that was right for you?

Meg Donnelly:

So, I would say I was lucky to see the headache clinic. I was seeing a neurologist at a hospital first and just outpatient and it got to a point where he referred me to the headache clinic. So, the good news is that he realized I needed more help than he was able to provide or more specific. And so, I did go to a headache clinic and they spent a lot of time talking to me about where I was in my life, what type of medicines had I tried. So, my current treatment consists of BOTOX for Chronic Migraine, a diet that avoids my migraine food triggers, daily meditation and therapy.

Nora McInerny:

So, I do want to talk about BOTOX as the show is sponsored by AbbVie. It's great to have a guest who has direct experience with one of their treatments. Can you talk to me about what the experience is like on injection day? Walk me through the process, what happens, how you feel after.

Meg Donnelly:

My first experience, I did what I could to create that support around me because I had learned by then that I needed it. So, I had someone come with me, I brought essential oils, I had a meditation play on my phone. So, for me, in the beginning, a lot of the prep was mentally so that I was ready for it. So, as I started to go every 12 weeks, I stopped needing someone to come with me so now I go on my own, it only takes 10 minutes. So, it is a slight pinch but it's 31 injections. You sit in a chair so that they, at least I've done it sitting in a chair, so that they have access to you 360. They talk you through it so they will tell you exactly where they're about to inject and if they need you to do anything. So, I think it's important as the patient if you want them to tell you or do you want them to just get it done.

Nora McInerny:

As a reminder, BOTOX is a prescription medicine given by your doctor so it's important to talk to your doctor about the important safety information for BOTOX that we talked about with Dr. Rhyne and the additional important safety information at the end of the episode. Meg, you are so wonderful and so delightful. Is there a message that you would like to leave the audience with?

Meg Donnelly:

Yeah, absolutely, because it's a message that I remind myself is that just try to find those moments and exaggerate the joy is a big phrase I've been thinking about lately is exaggerate the moments that feel good and continue on your path and your path as your own.

Nora McInerny:

Exaggerate the joy, is that an episode title? Meg, I have loved this time together so much. Thank you for joining us, I am so honored to have met you and heard some of your story.

Meg Donnelly:

Thank you for having me. I really enjoyed talking to you and hope the listeners did as well.

Nora McInerny:

Thanks for listening to The Head Start: Embracing the Journey. We hope you found something worthwhile here with us today, a new coping strategy, a relatable story, the comfort of knowing you're not alone. I am so happy to be a part of creating this community for all of us and especially for people living with Chronic Migraine. If you haven't found a treatment plan that is working for you, please do reach out to your headache specialist to explore your options. I truly hope this has helped you find a bit of comfort and maybe a smile, maybe. See you next episode and stay tuned for more important safety information.

The Head Start: Embracing the Journey is hosted by myself, Nora McInerny, executive produced by Yvonne Sheehan, our head of post-production is James Foster, our researcher is Sierra Kaiser and our writer is John Irwin. Original music by Soundcat Productions and Artlist.