Two Generations, One Shared Disease: A Conversation With Mother and Adult Son

Nora:

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

 

Nora:

Hello and welcome back to The Head Start: Embracing the Journey. This is season two of our podcast where every episode we meet a new person who is living with Chronic Migraine and spend some time walking their journey with them. But in today's episode, which is our last of this season, I can't believe it, we actually have two people to talk to.

It is one thing as a parent to deal with your own struggles, to put a smile on and push through your day so that your kids don't have to worry about you. To bear your own struggles is one thing, but to watch your children, even if they are now grown adults go through theirs, to see them face obstacles, it can be excruciating because it sometimes feels like it is our job to keep that from happening, to keep life and all of life's issues at bay.

My mom still thinks and talks about the worst flu I ever got. That was over 30 years ago, and I can tell that the memory still hurts her even though I barely remember it. Today's episode is about a mother and a son who are all too familiar with Chronic Migraine, both of whom have seen the other through some of the hardest parts of their journey.

Today you are going to meet Angel and Angel's 23-year-old son, Xavier. We've actually never done an episode like this before and so I'm really excited for you to hear it. It's a special opportunity to connect with two people whose migraine journeys are intertwined and a particularly impactful conversation for anyone whose family shares the experience of Chronic Migraine.

Each episode, we are also joined by my friend and colleague, Dr. Christopher Rhyne, but not today. Today we have another special guest. We have a nurse practitioner who is on the front lines of treating people with Chronic Migraine, Dr. Laurel Short, who on top of being a family nurse practitioner also has an added qualification in headache certification. Laurel, welcome to The Head Start.

Laurel:

Hi Nora. Thank you for having me.

Nora:

So, Laurel, we have had lots of opportunities to get a doctor's perspective on things with my co-host, Dr. Rhyne. I am very interested in getting your point-of-view as a nurse practitioner as well to see if you get to see a different side of things. How do you approach different patient journeys when experiences differ so widely?

Laurel:

In my experience, it's very common for individuals with migraine disease to experience differences in the pattern of their symptoms. And so, I feel like it's a big part of my job as the healthcare provider, especially at the first visit, to spend adequate time with the patient and ask very open-ended questions. I typically start with just asking the patient to tell me the story about their migraine attacks because everyone is coming from such a different background, and I want to understand how this has impacted their life because that's really important.

And so, kind of a key or a nugget out of that is by asking patients, kind of turning the question around instead of saying, "How many days per month are you having headache days?", because honestly, most patients are so stoic and they've really been pushing through a lot as I like to turn the question around and say, "How many days per month are you crystal-clear?” And by that we mean how many days have you not experienced a headache or migraine attack. And that gives us a good starting point that we can then keep coming back to. Patients often tend to focus just on their worst days, and so I want to get a good picture, you know, about how they're feeling all the time so I can set the appropriate treatment plan for them.

And we need to remember that migraine is a chronic disease, and it requires shared decision-making between the provider and the patient, and I really feel like that's something that nurse practitioners do very well because that's the foundation of our training is chronic disease management. So, reassessing those treatment plans as we move along with the patient allows for that partnership.

Nora:

So as a Chronic Migraine journey continues, it's important obviously for people to have proper access to care, but there's also just the knowledge of who to go to in order to be seen by the right people.

Laurel:

Absolutely. So two strategies patients might want to use are, one is just talking to the primary care provider because there may even be a headache specialist that that PCP can refer them to, and secondly, there is a wonderful online directory through the National Headache Foundation where patients can look for someone who has a certification in headache and that may be a neurologist, but it may be someone like me who's a primary care provider who has gone on to do additional training and certification in headache. And so that's a really nice resource. Patients can put in their zip code and look for someone who's close to them.

Nora:

Thanks Laurel, ok, now let's get into my conversation with Angel and Xavier.

So, Angel, we like to start this out on a very serious note. So, what are you watching right now on TV? I need some show recommendations.

Angel:

I'm not a big television watcher, but I grew up watching soap operas with my grandmother who raised me, and I still watch General Hospital to this day.

Nora:

That is the perfect answer. I love that.

So, Angel, you have one of the hardest jobs in the world, which is being a mom, but you are also a boss, which means you have to juggle a lot and manage your Chronic Migraine. How has your Chronic Migraine been a defining part of that journey?

Angel:

I would say that it's made me a compassionate leader. I have a team of six individuals, and I show up in my true self. They know I'm not a 100%. In fact, I had to take leave today and yesterday I thought I could work, and I said, "Just give me a couple hours," and one of the, my leads on the team said, "Angel, you rest. I've got you. Nothing's going to happen while you're gone." And I lead by example, so they can tell if my speech is off or if I start work very early, they know I probably didn't sleep the night before. And I think that leading through grace and transparency has made me the leader that I am.

Nora:

That is exactly what, in my opinion, leadership is and how it should be. Everybody deserves a compassionate leader. Angel, you mentioned leadership in a professional sense, but I also do want to hear about your experience as a mother. As your kids are growing up and you are unable to avoid the stress of life, children are wonderful, I'm interested in how having Chronic Migraine impacted or informed your parenting as your sons grew up.

Angel:

A very long time. With Xavier, I was a divorced mom. I became a divorced mom when Xavier was six weeks old, and so it was just me. I didn't have a choice. I had to show up. I had to be present. So, there was many a times that I would be laying in the bed, and he would be in the bed playing. He loves to draw and so he did a lot of drawing.

Nora:

Chronic Migraine is unpredictable, and it can really be an interruption to your plans and your life. Were there any moments that you remember any special moments where Chronic Migraine got in the way?

Angel:

It's the everyday moments for me. There are so many times, like yesterday I had a migraine attack and Xavier came in the room and the only reason why I know he came in the room is because I felt his kiss on my forehead. I can tell the difference between my sons' kisses, who they are by their kiss, when I'm laying on the couch. I think he touched my hand for a second and I was like, "No," and I just rolled back over.

So, I miss those everyday things. With my youngest son, Zion, he had a football game, and I was having a migraine attack and all I was trying to do was get out of the stands and some of the parents saw it was happening and walked me to the car and my brother and his partner had to drive me home. When I have to miss those moments hurt the most because they're those moments in time.

Nora:

Yeah. Are there other migraine attacks that are as memorable or as visceral as that one?

Angel:

One that stands out is, I don't remember where Xavier and I were going, but we were on the way home, and I had a migraine attack. And I was afraid to drive, and Xavier wasn't driving yet. I knew that I had to get us home. And when I looked at Xavier and I saw how defeated he felt because he couldn't drive me, it broke my heart. It's not his job to protect me, it's my job to keep him safe. And so that really stood out for me.

Nora:

Thank you for sharing these. I know it's so hard to revisit some of these moments and I know it'll be really helpful for listeners.

Angel:

Of course. You know, when you asked about a memorable moment, I, it's hard because it's a lot of responsibility on Xavier. He is older than Zion, and maybe a year ago my husband was here, but I think he was working, later he remembered, but had a migraine attack, and Xavier had to find me on the floor. That was a lot to have to digest.

Nora:

So, this is a great place to bring Laurel back to the conversation. Laurel, Angel has had to navigate both parenting with Chronic Migraine and trying to find a treatment plan that works for her. And there's one consistent theme that we've seen come up with every guest on the show, which is some hesitation or even sometimes fear around seeking treatment for their Chronic Migraine, whether it's the fear of procedures or lack of awareness about the treatment or a fear of how they will be treated. Since you are the one often managing the treatment, how do you address people's fears in these scenarios?

Laurel:

Absolutely. I think number one is addressing that fear of stigma or the fear of, "Am I going to be kind of brushed off or am I going to be listened to?" And so that gets back to what we talked about in the beginning of just being open and having a good connection with the patient. And that's really the key. It's really fortunate that we have more options for Chronic Migraine treatment than we used to, so we can spend some time going through what the different treatment options are and deciding together what's going to be the best fit for the patient. And I think that naturally then alleviates some of the fears of a procedure or a needle or even a regimen that the patient might have because we can talk through it and then make sure that we're both comfortable with the plan moving forward.

Nora:

We'll be right back after the break with more from Xavier and Angel.

Nora:

Welcome back to The Head Start: Embracing the Journey. This is our conversation with Angel Paschall-Harmon and her son, Xavier.

We actually have Xavier here, who as I mentioned at the top of the show is 23 and it is such a, I don't want to say a treat, but it really is, I mean, for our audience to have these two sides of similar stories is really important. Xavier, how does it feel to hear your mom describe this?

Xavier:

I don't want to say eye-opening because I mean, it's my mom. I know these things, but it's very interesting to see her side of these events. ‘Coz, I remember not being able to drive her home and I felt bad, for lack of a better word, just awful. I remember these events, and well like, in the moment it's awful. And then eventually these things pass and I kind of like, move on until the next thing happens. So, it is very interesting, like hearing her talk about these things in retrospect from her side, sucks to hear, but I do appreciate hearing it though. I'm glad we're talking about it. So yeah.

Nora:

Can you, Xavier, give us an insight into your migraine experience? What triggers a migraine attack for you?

Xavier:

Bright lights, loud noises, the weather slightly changing, stress definitely.

Nora:

We asked your mom earlier to share memorable migraine attacks that she experienced. For you, is there a particular migraine attack that you remember, and can you tell us where you were, how it came on and how you felt?

Xavier:

There's definitely a few that stand out to me. One of the ones was just full-on migraine attacks every day in class. So, there'd be times I would be late to class, or I just simply couldn't show up and it didn't help that the classroom was one of those classes where it's like super big with all the lights and talkative students. So, the whole time, I'm trying to listen to ... I forget what the subject was, something computer-related with a giant light right above me. Students would not stop talking. It felt like a spike going through the back of my eye, but that's just one instance.

I can think of other instances where, like my mom said, in normal life moments, like I'm hanging out with my friends, hanging out with my girlfriend or I'm talking just doing normal things and all of a sudden, these migraine attacks, they hurt. Like it sometimes comes out of nowhere, like sometimes I'm able to hide it like a small wince or whatever, but sometimes it gets real bad and I have my friends worrying about me like, "Xavier, you good?" I'm like, I like, "Yeah, no, I'm not, but you know."

Nora:

Yeah, but I'm going to tell you I'm fine so that you don't worry about me.

Xavier:

Right, because I don't want to talk about this.

Nora:

Yeah.

Xavier:

So yeah, just that whole week, just having to deal with that.

Nora:

You're talking about getting these migraine attacks while you're also you know, in the best years of your life, right? You're young, you’ve got like, you're in college. How do you navigate that specifically as a student? Do you think the professors understand? Do the other students in your class get it?

Xavier:

The other students, like, can tell if they ask, because I only talk to so many people. Normally it stops at, "Are you okay?", "Yes or no," "I'm sorry," they're back to work. But professors have been pretty understanding about it. As long as I tell them what's going on, they're really chill. But I do remember like last semester it was getting real bad and I missed a few days. Again, I told my professor, but like it or not, life goes on. I have to get a good grade in these classes. So, I showed up. I was still wearing sunglasses and I'm not the kind of person who likes wearing sunglasses indoors, but I had to, and I told the professor like, beforehand, class started, that's why I'm wearing them. She understood, because I know there's some professors who's like, "No hats, no sunglasses," that kind of thing. But as long as I tell them what's going on, they've been pretty, they’ve been pretty understanding.

Nora:

I'd love to get your perspectives on the generational differences and how you think about, feel about, talk about Chronic Migraine. You're living it in different ways, you're in different life phases, but you've also worked through this together and walked together. I think people assume that Gen Z is more apt to talk about things, address them, like break stigmas, but I'd love to hear that from the two of you.

Xavier:

Mom, you can go first. I still need to think about that question, okay? Okay?

Angel:

I'll go first as the older person here. I was raised by my grandmother. So, going to the doctor for every little thing, which is not something that you did. And it's also a part of the socioeconomic environment as a housekeeper, so it's not like I had ready accessibility to healthcare. She tried all the things, the peppermint oils, the ice packs, all the little things trying to help me with my migraine attacks.

The generation from which I'm part of, I would say, it’s say, I am the generation of, you know, we're going to do all the things that our baby boomer parents didn't do. So, we going to fight, we’re gonna, we're going to suck it up and we're going to do it. And so, what I've tried to show Xavier is that, yeah, there will be times, and Zion as well, there are going to be times that you have to push through. There are times where you will have to go to class with your sunglasses on, with your head down to get through, but there are times where you just can't and that's okay.

And hearing Xavier talk about that situation with the professor, I have asked Xavier, "Tell your professors that you have migraine attacks." And he didn't want to be labeled a certain kind of way. "Mom, I'll figure it out." That's his favorite saying, "I'll figure it out." And I was so proud when he finally decided to let a professor know that,"I'm struggling right now."

So, the only way I could get to where I acknowledge my Chronic Migraine, whether it be because I was in graduate school and I had to tell my professor, "I need more time to read all these documents," is because I wanted to set the example there. I couldn't ask him to do what I wasn't doing, so I had to reteach myself. And then also, being involved in migraine advocacy organizations where I was taking that mask off and making discussing Chronic Migraine normative for those of us who live with the disease. Does that help you, Xavier?

Xavier:

You kind of spilled all my secrets with the whole, "I'll figure it out," but that is very much something I was going to touch on, because my generation is very much a lot more accepting to different kinds of like, disabilities and all that kind of stuff. But despite that, like, my friends have always been very open, if they, like, "Hey, you wanna do something?"

"I can't. My head hurts." I still don't ever really call them migraines attacks, just say, "Oh, my head hurts," because like she said, I don't want to be seen as some kind of way like, "Oh, I just can't because I'm lazy," or something.

So, I've always avoided help. I've always avoided communicating with people because I just ... It's a combination of shame, and stubbornness, and ego. So, I've always been like, "I'll figure it out." So just recently I've been starting to talk to my school, my teachers, and professors about it, and they all, all of them have been very open about it.

Nora:

Yeah, I think Angel, when you're raised by the baby boomers, no offense to my mother or any of the boomers, but it's like we really were raised to be just tough it out, "You're fine, get up. It doesn't matter. Everything's fine." And I think it is so important, especially when you know, we have the sons, that we like create that space where it is okay for like, people to share their struggle, specifically men too, right, because it's such a toxic environment for like, our boys to grow up in, and men who believe they have to be like, tough, and that being tough is somehow at odds with like, their humanity. So, I appreciate you both speaking to that.

I want to talk a little bit about treatment. Have you had different experiences with headache specialists along the way? Did they approach you differently, offer you different treatment options? Tell me about the sort of journey to managing these migraine attacks.

Angel:

Well, for me, I have gone through a lot of different neurologists, headache specialists, the general practitioner route, having to try all the different medicines to get approval to try yet another medicine. I had one that took me over a year to get approval.

One of the more common is being believed. In the medical field, that's a long debate around in conversation around Black women and pain, and I, whether it be maternal health or even in migraine. And that has been a challenge, finding someone who believes that I'm struggling and to add an additional layer to that, when I go to the hospital, and I've gone to ER without my husband and the way I'm treated and the way I'm treated when my husband is with me. My husband is Caucasian, and so that has been one of the most challenging things.

Nora:

Yeah, thank you for sharing that. I'm so sorry that that is your experience and I also think it's really important for people to hear that and to, it's one thing to read reports and read headlines, and it's another to hear it from a person who's experiencing it. So, thank you.

Laurel, Angel and her son shared a really interesting perspective on the generational differences living with Chronic Migraine. But from your point-of-view, as a nurse practitioner, do you approach different generations differently when you're talking diagnosis and treatment?

Laurel:

Yeah, it's a really interesting concept and I don't think I approach them differently necessarily, but I do notice some differences in how different generations may share their symptoms, and certainly even within generations we just have different personalities, right? But I think the younger generations do feel a little more open to share how Chronic Migraine is affecting them both physically and in their emotional health. And I find that helpful.

And I have personal experience with this as well. I grew up watching a parent with Chronic Migraine. My father has Chronic Migraine, and so I kind of observed how his generation kind of navigated the disease versus some of the younger patients that I work with.

Nora:

I also want to ask you as a healthcare provider why some healthcare providers might hesitate to recommend certain treatments for certain patients.

Laurel:

Yeah, it's interesting because while this is such an exciting time in migraine care, we have many more options than we used to. However, I still see clinicians hesitating to offer newer therapies at times, and I think there's multiple reasons for this. One could be that the clinician is concerned about the cost to the patient, that maybe the patient won’t be able to access it, so I just won't even offer it because I don't think they're going to be able to afford it, or they're maybe hesitant about the process of insurance approval. I think we heard your guest talk about taking a year to get access to medication, and so I see that as part of my job though is to go through that process. We can't let that be a barrier to offering it to patients, in my opinion.

And then thirdly, I think some providers see these newer options as the quote ”last resort” for patients. We should be talking about migraine specific therapies and really upfront and offering what we feel is the right option for that patient.

So, one specific thing to note for our audience listening today is that after receiving a prescription, there may be some specific programs or assistance programs from a manufacturer that will allow that therapy to be affordable to them and help bridge the medication cost, and hopefully many providers are aware of that too. But again, I think that patients should advocate for themselves and ask directly, "Hey, is there an assistance program I can use or is there anything that could make this medication more affordable to me?"

Nora:

I want to talk about your relationship, mother, and son. I also have sons. It is so special, and I'm wondering how like the shared experience that you have, not just, you know, a parental child relationship, but the shared Chronic Migraine experience, what do you think it's done for your relationship?

Xavier:

One thing I do know is as much as it sucks to see my mom struggling, there's like a, some solidarity within it. So, it was like, "I'm hurting. She's hurting, we're hurting together." Hmm-mm, so it was at least nice to know like, “hey, at least I'm not alone in this.” Not that I ever felt alone with her. Growing up when it was just me and my mom, we had a thing as just two people, one family always, do the little hand thing, and they mainly just applied to like, mom-son but kind of, also not doing this alone.

Angel:

Xavier did the two fingers, one family. It made my heart smile. I did that when it was just me and him. And that would let him know that we were okay, that we would be okay just being us. We were a perfect family just the way we were. Seeing how he relates that to us living with Chronic Migraine, maybe I'm doing something right in this mom thing because it is the hardest job, and but it's the best gig ever is what I like to say.

What I also hope is that Xavier and Zion both see that living with migraine doesn't make them broken or inferior, and in some ways, it gives them an insight and a level of compassion for others that I truly always see in Xavier. What's most important to me with bringing Xavier into this work of advocacy is that men deal with migraine the way Xavier deals with migraine, whether they are in a toxic masculinity situation or it's a tough it out. Even with a mother who tells him it's okay, he internally still does this. And so, the more that we add men to this much needed conversation, I think the more we can move past this idea that they can just, my son calls it, "I'm just going to tough it out, mom." But there's sometimes where you just need to rest. I am hopeful that that is something that both my sons learn.

Nora:

Beautiful. That was perfect. And you are such a good mom.

Angel:

Oh, they make it easy. Thank you, son.

Nora:

As parents, we are wired to want to prevent our children from experiencing any difficulties. We want to smooth the path for them, clear the obstacles, make sure that their journey is safe and pleasant, but that's not always possible. And so, I very much appreciated Xavier and Angel for both joining us on this episode and so generously sharing their experience as a mother and a son who are all too familiar with Chronic Migraine.

Like Angel pointed out, the idea of being strong for our kids can sometimes backfire. It can put undue pressure on them to fake it till they make it, when really it is a very human, very normal thing to need help, to need a break, to need rest, to need each other.

Thanks for listening to The Head Start: Embracing the Journey. This was season two. We hope that you found something worthwhile here with us today and in this season. 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 reach out to your headache specialist to explore your options and stay tuned for more important safety information.

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.