Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. 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. 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 additional Important Safety Information, including Boxed Warning, within this podcast or on the website below.

Nora McInerny:

Hello and welcome back to The Head Start: Embracing the Journey. I'm Nora McInerny, and this is season two of our show. I am a writer and a performer. I have given a TED Talk. I have performed in theaters for hundreds of people at a time. I have bombed so hard, not at a live show where people bought actual tickets to see me, but in a classroom filled with kids, who are the toughest audience on earth. I went in feeling excited. I left feeling like the biggest loser who has ever lost. As soon as I started talking, my mouth went completely dry.

I don't know what I said. I was talking in circles. I struggled not to notice that every kid in the audience had a facial expression that said, "Get this lady out of here." So, all this is to say that teachers are amazing. Amazing. It is amazing to hold the attention of a group of kids. To pour the necessary knowledge into their spongy little brains, to not have a near panic attack when all you had to do was talk for 20 minutes about your career, and then to go home after putting so much love and energy into other people's children and still make time for your own family.

It is truly astonishing work, and I am very grateful that there are people out there who can do this. Today's guest, Danielle, or Mrs. Mandoza to her students, spends her days in the preschool classroom helping the littlest of little kids learn their letters and colors, sparking and fostering a love of learning while also living with Chronic Migraine, and then she goes home and pulls the second shift that is familiar to anyone who has kids.

During the pandemic, we all agreed that teachers are heroes, superheroes. But the thing about being labeled a superhero is that people often forget that behind it all you have struggles of your own. So, in today's conversation, we are letting Danielle take off her superhero cape and just be a person living with Chronic Migraine. So, as always, I am joined by my buddy, my, in this instance, colleague, Dr. Christopher Rhyne.

Dr. Christopher Rhyne:

Hey, Nora, what's going on? We are definitely buddies and definitely colleagues. I am stoked to sit and talk with you today and to really dig into Danielle's story.

She is so focused on finding the right treatment plan for her Chronic Migraine. She has been open to trying different options that could work for her, and it's been awesome to listen in as she shares her journey with you and the larger Chronic Migraine community.

Nora McInerny:

So, let's get into my conversation with Danielle.

Danielle, thank you for being here. I know it's no small thing to try to arrange your schedule, especially when you have kids. Right before this conversation I was thinking about teachers. I was at school, at my kid's school, this morning and just feeling so grateful for the teachers that they have in their lives.

Teaching is such an incredible gift that you give to the world. Did you always know that you wanted to teach? Did you always know that you wanted to teach little kids?

Danielle Mandoza:

I, yes and no, like. Ever since I was little, I, I have younger siblings, so I would always like, play school with them over the summer and like, give them worksheets. And I always was like, oh, I'm going to be a teacher, you know. And then high school hit, and I was like, hmm, I don't know. So, I actually kind of considered looking into, like, forensic science. I took some criminal justice courses and forensic science courses, and I really enjoyed it.

But then I just ended up following my gut in trying to go to school for elementary education. Hmm, life happened, and I had a daughter a little earlier, so I didn't get to finish my degree. And I was like, you know what? Why don't I try a daycare? I love it. I can't see myself doing anything else. And I am actually planning on going back to school to be able to go back to elementary education. I really love it. I've tried not to, but it's just I truly think it's my calling.

Nora McInerny:

I love that. And also, I don't think that there's anything more big sister energy than making worksheets for your little siblings. That's hilarious.

Danielle Mandoza:

Yes. They're like, ugh, again?

Nora McInerny:

That's incredible. You're like, we're going to play school. Okay? And you guys are going to learn today.

Danielle Mandoza:

And I know it's summer break, but I don't care. This is my enjoyment.

Nora McInerny:

Oh, that's so cute. So, Danielle, you're joining us on this show because you live with Chronic Migraine. Can you share your long journey from where you started experiencing symptoms to your Chronic Migraine diagnosis?

Danielle Mandoza:

Yeah, absolutely. So, umm I started experiencing migraine attacks when I was younger and people are like, "Oh, you need glasses. Like, go to the eye doctor and see." So, we tried that. I did get reading glasses, but I continued to have migraine attacks. And I think pretty recently, maybe within the last seven years, I got diagnosed with Chronic Migraine. I met with a neurologist, and they asked me different questions, I explained to them kind of, what I was going through and how I tried different things, and I would take different, like, over-the-counter medicine and nothing is working and it's debilitating. That's how I really felt, and they were like, "Hmm, yep. Based on everything you're explaining to us and your symptoms, you have Chronic Migraine, so we are going to work with you on it."

Nora McInerny:

So, Dr. Rhyne, I'm interested in getting your take on what Danielle just talked about, this long journey to a diagnosis. What are some of the things to keep in mind to help people describe their experience to their doctor so that their doctor better understands their headaches and migraine attacks?

Dr. Christopher Rhyne:

I love this question so much, Nora. So, it's so important that once we have put the time together in our busy lives to finally go sit down with a provider we’re prepared for that discussion that this isn't something that we should do sort of off the cuff. So, with those Chronic Migraine symptoms that those patients are experiencing, they show up in front of that provider, and the number one most important statement that I can make is that you should talk to your doctor and don't leave details out.

You want to be really explicit about everything that you're experiencing. There can be a lot of stigma and insecurity around discussing, " I'm nauseous. My, the lights bother me. There are foods that I can't eat. There are things that I can't do or that it's impacting my relationships," and around that we just want to be really, really clear. We don't minimize any of that experience when we're talking to a provider. I think that we should be really specific about the number of days, particularly in a month that you're experiencing symptoms of any kind. And even better if you could keep a really specific headache diary to share with that provider when you show up, that'd be even better.

We want to let our doctor know if we've experienced light or sound sensitivity with those headaches and those migraine attacks. We want to pay attention to things like nausea, like we've talked about already, even if there's not vomiting. One of my favorite things about patients is I'll ask, you know, I go, "Are you ever nauseous," and the first thing out of their mouth will be, "Well, I never throw up."

And so, what I would argue there is, it's okay in this place with the door closed to be a little bit more vulnerable is probably, you know, the key takeaway is to simply be very clear. You know that provider hopefully sitting across from you, recognizes everything that migraine attacks are doing to your life. They just need to hear it from you first so that they can provide a diagnosis and then we can move forward with discussing treatment options.

I think it's really critical again, as we move down this list of things to prepare for that provider that we talk about how long we've been dealing with these headaches or migraine attacks, when you first started experiencing them, when they changed, if they changed, how they changed. And then lastly, we want to make sure that we mention medications that we're currently taking, that we've taken in the past. Things like that are really critical for your provider to hear about.

Nora McInerny:

All right, back to my conversation with Danielle.

What are your migraine attacks like, and do you know what your triggers are?

Danielle Mandoza:

So, I'm still, kind of, working to learn my triggers. I know for some people it's like certain foods and things like that. I have not really narrowed it down. I know things that can contribute to it for sure or make it worse if I already have something. I know for me, lights are really big, especially fluorescent lights. They really impact me. Noise and then heat is a really big one for me as well. If I start getting hot, I can have a migraine attack.

Nora McInerny:

Is there anyone out there who's like, you know what? I love fluorescent lights. Like, is the fluorescent light industry, what did they do to get just a lock on lighting?

Danielle Mandoza:

Yeah, who came up with that idea because I want to have a conversation?

Nora McInerny:

Yeah, so I can only imagine what it feels like when these migraine attacks hit. Could you put us in a moment? Kind of paint us a picture of what they look and feel like.

Danielle Mandoza:

For me personally, they start in my neck, and they kind of just work up my neck and through my entire head to the point where you know, my, my vision starts to get real blurry on the sides.

A lot of times I'll end up throwing up. Any noises, lights, sound, I don't want any of it. I want to be in a black room. I want to be alone. I don't want anyone talking to me. It just feels like this pressure and I cannot get rid of it.

Nora McInerny:

Ugh, God. And also, you're experiencing this while you are in charge of a room full of small children. Will you kind of walk us through this example where you experienced a migraine attack while you were at work?

Danielle Mandoza:

Yeah, umm, so the night before, I was totally fine. I went to bed. I woke up right away with it. So, I was like, okay, I'm going to take something over the counter, I'll be fine. So, I get ready, get my kids ready, and we leave to go to work and school. We get up really, really early so there's like, no lights on. It's very dark. It's quiet. We're all still half asleep. I'm like, all right, I really don't feel great, but I'm going to, I’m going to make it through work. It's okay.

I get to work. And as soon as I walk in the door with the fluorescent lights, it hits and I'm like, mmm, I am not okay. This is definitely a migraine attack. And as soon as I walked in, I told my director, "I am not going to be able to make it through the day. I'm just letting you know. I'll stick it out as long as I can.” But as soon as I walked in here, and those lights hit my eyes. So, she was like, "Well, you know, now that the sun's coming up, you can turn off your fluorescent lights and just use the natural sunlight."

I was like, all right, you know, sure, I'll give that a shot. I went to my room, turned off the fluorescent lights. Hmm, we slowly started having kids, and I'm trying to deep breathe hmm, to just calm myself down. Because if I stress out, that's not helping my migraine attack. It's just, it’s not going away. I called my director and within about 30 minutes, she got someone in there.

So, she got me out of the room, and she was like, "You know, why don’t you go do some work training on the computer?" As soon as I opened the laptop, I was like, nope. It was all the way on brightness. She had me go back in the room while she was trying to find coverage, and they got it within probably about two hours.

I did end up leaving for the day, but those two hours were really brutal. Hmm, and I love my job. I loved being there. But personally, I feel like if someone had something else going on, like they were, had the flu or something, they would get them out immediately. But when it came to my migraine attack, it kind of felt like, “Well, I'm sure it'll be fine. She’ll, she'll make it through.” Hmm, so I had teachers and parents stop me and ask, "Hey, are you okay? Like, what's going on with you?” And I was like, "I know. I’m really struggling today. I’m actually, I'm going through some stuff, and it's just been a rough day."

Nora McInerny:

Yeah, hours feel differently when your body feels differently. You mentioned that throughout this journey there are moments when you felt misunderstood, or you felt alone. I've learned over the years that even when people have the best intentions, even when they're really trying to show up in the right way, they don't always realize what you are actually going through, and they do say and do the wrong things. How do you think that affected how long it took you to seek out a doctor and seek treatment?

Danielle Mandoza:

So umm, migraine attacks are actually... my grandma had them. My mom had them. My sister has them. So, it's been in our family. So, even as long as it took me to get the help I needed, I think it was still cut a lot shorter than some people because I do have family who have had Chronic Migraine. I do think that it was definitely downplayed, like, “oh, it's just a headache.” And then once my neurologist was like, "Hey, no, she has Chronic Migraine," then they finally did take it serious and they are more, hmm, sensitive to it. And when I talked to anyone in my family or you know, people like that, a lot of times they are more receptive to, "Oh, okay, it’s actually Chronic Migraine. It's not just, just a headache."

Nora McInerny:

Do you think that kind of minimization, whether or not it was intentional... And I've heard that, by the way, from every single person that I've interviewed for this show, like, "Okay, well, it's just a headache. Well, you look fine." Do you think that delayed your seeking out a treatment that would work for you?

Danielle Mandoza:

Probably. Like you said it’s, I look fine for the most part, but I do think just because typically there's no real... like a broken arm, you can tell it's broken. When I tell you I have a migraine attack, you’ve kind of just got to take my word for it you know, and realize that I know how I'm feeling. So, I do think that played a little bit of a part in getting the delay of actually getting into a neurologist and getting diagnosed with Chronic Migraine.

Nora McInerny:

After the break, we'll be right back with more from Dr. Rhyne. So, stick around.

Nora McInerny:

Welcome back to The Head Start: Embracing the Journey.

So, Dr. Rhyne, we just heard Danielle recount the details of her Chronic Migraine journey and receiving a diagnosis.

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

Dr. Christopher Rhyne:

Awesome question, Nora. I think really understanding first what her experience is helps us really sort of understand her journey to diagnosis of Chronic Migraine. So, let's talk about BOTOX^® for Chronic Migraine. BOTOX^® prevents headaches in adults with Chronic Migraine, which is 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. 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 weaknesses can be a sign of a life-threatening condition. Patients with these conditions before the injection are at higher risk of those side effects and 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^® for Chronic Migraine if there’s a skin infection. And tell your doctor your medical history, muscle, or nerve conditions history along with things like ALS, which is Lou Gehrig’s disease, myasthenia gravis, Lambert-Eaton syndrome, any medications, including other botulinum toxins that you might be utilizing, as they may increase the risk of serious side effects.

Nora McInerny:

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

Dr. Christopher Rhyne:

So, this is one of my very favorite things to do with patients because there's so much sort of preconceived notion around what BOTOX^® is and what the process kind of goes through. So, the first thing we need to understand when it comes to BOTOX^® for Chronic Migraine is that there is a set injection protocol.

So, we talk to patients about that experience. We let them know that they're going to be seated in a clinical setting. Maybe it's a procedural suite like I use here at the hospital that I work out of, or maybe it's just your physician's office. BOTOX^® is injected in 31 shallow sites into seven muscle groups that the FDA approved. Those areas are going to be in the head and in the neck. You start with two treatments, so those are going to be 12 weeks apart, and then we continue that every 12 weeks thereafter.

So, we do this every three months, four times a year. Oftentimes patients are worried about the needles in the procedure, and they might feel discomfort. Many patients, however, tell me that after the injections, they feel like tiny pinches.

Nora McInerny:

So once the procedure is done, how soon can people usually feel the effects from the treatment?

Dr. Christopher Rhyne:

Awesome question and it's one that I get all the time. So, patients may feel results as soon as four weeks, with full effects after two treatments. So, those BOTOX^® experiences are going to be different based on the patient. In the data that was presented to the FDA, BOTOX^® prevented on average 8 to 9 headache days a month at 24 weeks versus 6 to 7 with placebo.

Nora McInerny:

Let's jump back into my conversation with today's guest, Danielle Mandoza.

So, it's interesting that your journey also, of course, includes a whole separate path of finding a treatment that works for you. When did you first try BOTOX^® for Chronic Migraine?

Danielle Mandoza:

Four and a half years ago, maybe five years ago, I went to my neurologist, they were like, "Okay, you know what? I think you would be a candidate to try BOTOX^® for Chronic Migraine. What do you think?" And I'm like, hey, if you can tell me like, there's a chance it could work, then I’m, I'm all for it.

Nora McInerny:

There are some listeners who might have a fear of needles. Can you walk us through what your BOTOX^® for Chronic Migraine injection experience is like?

Danielle Mandoza:

Yeah, so I have an amazing neurologist. Hmm, I go in there, and like, I'm not scared of needles, but the thought of having quite a few injections into the muscles in my head and neck doesn't really sit well with me either. So of course, I'm a little nervous when I walk in there, but my neurologist is so amazing. And I, I do personally think like having an awesome neurologist helps a lot with that process. But umm, I come in, he's like, "How are you feeling today? What do you want to talk about? What's going on?" And we just small-talked for a little bit about how I've been feeling, how I felt after my last treatment of BOTOX^®, what I'm feeling now.

So, he really makes me feel at ease before we even sit down. But once I sit down and do it, he's like, "All right, you ready for this?"

And I'm like, "All right, ready as I'm ever going to be." And the treatment is done within probably ten minutes.

He.., I've learned so much honestly about my Chronic Migraine through my neurologist. He listens to what I'm telling him about my migraine attacks. He discusses it. It's just really, really awesome to see somebody who genuinely cares about your story and your experience. And I really have found that in him, so I'm very thankful for him.

Nora McInerny:

Oh, that was great. Let's jump back to BOTOX^® for Chronic Migraine. It sounds like it's been effective for you personally?

Danielle Mandoza:

For me personally, it has reduced the number of headache days and I think in my experience it’s been helpful.

Nora McInerny:

There will be people listening on their own Chronic Migraine journey. Do you have any words of wisdom, words of encouragement for them?

Danielle Mandoza:

I would first say that you're not alone. I know a lot of times when you're experiencing migraine attacks, you feel like nobody knows how you feel. And everyone's migraine attack, of course, is probably different from person to person. So, I would say don't give up until you find a treatment plan that works for you. Whether it is a treatment plan or whether it's just an incredible neurologist, don't give up.

Nora McInerny:

That was really beautiful. An absolute pleasure to meet you and thank you for all that you do for kids.

Danielle Mandoza:

Thank you so much.

Nora McInerny:

Bye.

Danielle Mandoza:

Bye.

Nora McInerny:

All right, so Dr. Rhyne, now it is time for us to talk about access. Are there any hurdles that patients face in trying to get access to BOTOX^® for Chronic Migraine?

Dr. Christopher Rhyne:

Absolutely. And some of those really can be handled by your provider. You are providing the appropriate documentation to discuss why we made the diagnosis and sort of justifying the diagnosis of Chronic Migraine, which then puts us in a good place to pursue BOTOX^® for Chronic Migraine for that patient if it's appropriate. But you know, patients are going to ask, "What are the side effects? What's the experience? How effective is it?"

And we've talked a little bit about that, and we've heard through Danielle's story her experience with that, but cost tends to be a hurdle for many patients. Oftentimes they're surprised to hear that most insurance providers, as well as Medicaid and Medicare programs do cover BOTOX^® for Chronic Migraine.

I'd advise patients interested in BOTOX^® to contact their insurance providers. I think it's really important to know that your provider is not allowed to contact your insurance provider on your behalf to find out if a particular therapy, BOTOX^® or otherwise, is covered, that you would be responsible for doing that, and have a discussion with that particular insurance plan.

Additionally, there are patient support programs like BOTOX^® Savings Program, which helps eligible, commercially insured patients save on certain out-of-pocket cost related to both BOTOX^® medicine and the injection procedure.

Nora McInerny:

Are there any other side effects that listeners should know about for BOTOX^® for Chronic Migraine?

Dr. Christopher Rhyne:

Absolutely. It's super important to go in with eyes wide open, and the most common side-effect that we see are neck pain and headache. There’s other side effects as well that can occur with BOTOX^® for Chronic Migraine which we saw in clinical trials. That doesn't cover all of the possible serious side effects with BOTOX^®. So, it's important that a patient speak to their physician about the important safety information concerning BOTOX^® for Chronic Migraine and see the full prescribing information.

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

Nora McInerny:

Dr. Rhyne, thank you. Thank you so much for being here. I am so glad that you are out there doing the work that you are doing. I'm so glad that there are providers like you out in the world who care so deeply about their patients. And thank you for doing this work with me.

Dr. Christopher Rhyne:

Thank you for doing it with me, Nora. I really appreciate the way that you bring this to light and bring it to life for people who are really struggling. We couldn't do it without you.

Nora McInerny:

Whether or not we're facing a room of preschoolers every day, I think everyone can relate to Danielle's story. It is hard even on the best of days to put forward our best effort, and it is even harder when you're doing it with Chronic Migraine. I am so appreciative of Danielle for reminding us of the power of asking for help. Nobody is a superhero. Not really. And even superheroes are really just people with fancy costumes.

So, if you are feeling like you have to keep it together for everyone around you, I hope Danielle's story reminds you to raise your hand and let people in, let people know when you need help, even when you're not really sure what that help looks like. 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 earlier and the additional important safety information at the end of the episode.

The Head Start: Embracing the Journey is hosted by myself, Nora McInerny, and executive produced by Yvonne Sheehan. Our EP of post-production is James Foster. Our supervising producer is Ciara Kaiser. Our writer is John Irwin, and the show is mixed by Nick Cipriano for Bang Audio Post. Original music by SoundCat Productions and Artlist.

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