Speaker 1: Ruby.
Speaker 2: Life sometimes has a way of blindsiding you with a
Speaker 2: feeling of being overwhelmed at the worst possible time. That's
Speaker 2: why you have your self care, your coping strategies, That's
Speaker 2: why you have us. I'm Norah Mcinernie and this is
Speaker 2: the head start Embracing the Journey, a podcast where we'll
Speaker 2: be taking all those things you usually say for your
Speaker 2: friend group out into the open so we can all
Speaker 2: find a bit of optimism for those battling chronic migraine.
Speaker 2: These conversations are going to be even more helpful and relatable,
Speaker 2: so definitely stick around. This show is brought to you
Speaker 2: in partnership with ABVI, So first let's hear some important
Speaker 2: safety information and stay tuned to the end of the
Speaker 2: podcast for more.
Speaker 3: Indication. Botox on abochulinum toxin A is a prescription medicine
Speaker 3: that is injected into muscles and used to prevent headaches
Speaker 3: and adults with chronic migraine who have fifteen or more
Speaker 3: days each month with headache lasting four or more hours
Speaker 3: each day in people eighteen years in older. It is
Speaker 3: not known whether botox is safe and effective to prevent
Speaker 3: headaches in patients with migraine. Who have fourteen or fewer
Speaker 3: headache days each month or episodic migraine. Important safety information.
Speaker 3: Botox may cause serious side effects that can be life threatening.
Speaker 3: Get medical help right away. If you have any of
Speaker 3: these problems any time hours to weeks after injection of botox.
Speaker 3: Problems swallowing, speaking, or breathing due to weakening of associated
Speaker 3: muscles can be severe and result in loss of life.
Speaker 3: You are at the highest risk if these problems are
Speaker 3: pre existing before injection. Swallowing problems may last for several months.
Speaker 3: Spread of toxin effects. The effect of botulinum toxin may
Speaker 3: affect areas away from the injection site and cause serious symptoms,
Speaker 3: including loss of strength and all over muscle weakness, double vision,
Speaker 3: blurred vision, drooping eyelets, coarseness or change or loss of voice,
Speaker 3: trouble saying words clearly, loss of bladder control, trouble breathing,
Speaker 3: and trouble swallowing. Please stay tuned for additional important safety
Speaker 3: information within this podcast. Today's guests. Tom Piserno is an
Speaker 3: actual botox patient who was on prescribed therapy when he
Speaker 3: shared his story. Changes in therapy status may have occurred
Speaker 3: since that time. Cheryl is not a botox patient Tom
Speaker 3: and Cheryl were not compensated by ABVI for sharing their story.
Speaker 2: I don't know if anyone has ever told you this before,
Speaker 2: but relationships can be hard work. It is, of course,
Speaker 2: the work that is worth doing, showing up, communicating, learning
Speaker 2: and relearning your own needs and another person's needs, and
Speaker 2: then doing it all over again. This is the work
Speaker 2: of intimacy, of letting yourself be seen and known, and
Speaker 2: taking the time and effort to see and know another person.
Speaker 2: It is rewarding, and it is exhausting, even more so
Speaker 2: when you add chronic migraine into the equation, because it
Speaker 2: can be hard to tend to another person when you
Speaker 2: are in the middle of a migraine attack, and it
Speaker 2: can be hard to let someone tend to you when
Speaker 2: you just want to be left alone in a dark room.
Speaker 2: How can you experience intimacy when one or both partners
Speaker 2: are living with chronic illness? How do we meet the
Speaker 2: needs of the one we love when we can barely
Speaker 2: take care of our own. It can be hard to
Speaker 2: talk about this publicly, which means it's important to talk
Speaker 2: about it publicly. And that's why I'm so grateful for
Speaker 2: today's guest Tom Paserno. Tom is living with chronic migraine
Speaker 2: and his wife Cheryl experience it's hiss migraine attacks and
Speaker 2: in the decades they've been together they met when they
Speaker 2: were fourteen, they have learned to communicate, to adapt, and
Speaker 2: to redefine intimacy within their own boundaries and limitations. And
Speaker 2: in an act of true generosity, Tom has shared this
Speaker 2: hard won knowledge with the migraine community, sharing his story
Speaker 2: and moderating conversations on migrain dot com. Before we meet Tom,
Speaker 2: a quick check in with doctor Rhyn, Doctor Ryan. It's
Speaker 2: so good to see you.
Speaker 4: Again, Hey Nora. So cool to be back with you again.
Speaker 2: So we have some very nuanced and dare I say,
Speaker 2: personal conversations to have today. We have explored many different
Speaker 2: parts of the experience of living with chronic migraine, but
Speaker 2: we have never explored how it can affect intimacy. How
Speaker 2: often does this part of life and a patient's expe
Speaker 2: experience come up in your office?
Speaker 4: Yeah, this issue is brought up by nearly every adult
Speaker 4: patient in conversation around their migraine attacks and their migraine triggers.
Speaker 4: The concerns often brought up while discussing the impact of
Speaker 4: the symptoms and the way that that could impact their intimacy,
Speaker 4: and so I'm really glad that we get a chance
Speaker 4: to explore that with this episode.
Speaker 2: Me too. Okay, let's meet today's guest, Tom Paserno. Hi, Tom,
Speaker 2: Hey Nora.
Speaker 1: It's great to be here.
Speaker 2: I'm so glad you're able to join us and we
Speaker 2: can get to hear more of your story. But before
Speaker 2: we get into that, I want to ask you about
Speaker 2: music because I saw that you sometimes use music to
Speaker 2: help you cope with a migraine attack, which is actually
Speaker 2: really interesting to me because most of the people that
Speaker 2: we've spoken to have said that they actually prefer silence
Speaker 2: when they have a migraine attack. So I have to
Speaker 2: know what kind of music helps you during a migraine
Speaker 2: attack and is a different and from the music you
Speaker 2: might enjoy at other times.
Speaker 1: I use the music that I normally listen to just
Speaker 1: every day, so sometimes I could use anything from classical
Speaker 1: music to more hard rocking type music.
Speaker 2: Hard rock.
Speaker 1: Yeah, I have a few favorite tunes that are on
Speaker 1: my migraine playlist.
Speaker 2: So yeah, yeah, that makes sense to me. So Tom,
Speaker 2: I want you to set the scene for us a
Speaker 2: little bit. Can you give our listeners an example of
Speaker 2: what a migraine attack feels like for you.
Speaker 1: For me, I have chronic migraine. So usually when I'm
Speaker 1: getting a migraine attack, one of the key indicators for
Speaker 1: me is my aura. I usually start to see my
Speaker 1: field division like an accrescent and it starts to blur,
Speaker 1: and that blur moves across my field division. So that's
Speaker 1: when I know that I'm truly having a migraine attack.
Speaker 1: So I know that if I'm feeling discomfort at the
Speaker 1: same time as the aura, then I know that I'm
Speaker 1: in for a rough ride. And if I'm driving in
Speaker 1: a car, I immediately know I need to pull over
Speaker 1: and I just have to wait it out and see
Speaker 1: what happens. That's how it all starts for me, for
Speaker 1: the most part.
Speaker 2: Do you have a particular moment or a particular time
Speaker 2: when you felt that coming, Like you can feel the
Speaker 2: migraine attack coming and you have to make an adjustment
Speaker 2: to what your life is going to look like that day.
Speaker 1: Definitely, while I was still working, I had to educate
Speaker 1: my team on what migrain was like for me so
Speaker 1: that they can understand when they notice that I'm not
Speaker 1: feeling like I'm not mentally engaged in what we're talking about,
Speaker 1: so I have to bring them all up to speed.
Speaker 1: But if I'm on my way to the workplace or
Speaker 1: something like that, one of my first things after pulling
Speaker 1: off the road if I'm driving, is I need to
Speaker 1: notify someone where I'm going, to let them know I
Speaker 1: was on my way. This is what's happening. If it
Speaker 1: gets worse, I will not be there. If it improves
Speaker 1: to the point that I can function, I will be there.
Speaker 1: So there's a lot of education just to make my
Speaker 1: life easier.
Speaker 2: And also, I think that kind of communication makes everybody's
Speaker 2: life better, even the people who are around you and
Speaker 2: not experiencing a migrain attack. I do think most people
Speaker 2: want to be as good as possible for the people
Speaker 2: around us. Right, Your colleagues want to know how you're
Speaker 2: feeling so they can jump into action pick up slack
Speaker 2: if you can't, because you would do the same for them.
Speaker 5: Right.
Speaker 2: Absolutely, I'm really appreciative of the work that you have
Speaker 2: done being so open, and you're writing about your experience
Speaker 2: living with chronic migrain and especially how that affects your
Speaker 2: relationship with your wife, who also experiences migrain attacks, because
Speaker 2: that is not easy to talk about. We don't really
Speaker 2: talk about intimacy very much. You wrote that you have
Speaker 2: started to reframe what intimacy means, knowing that it is
Speaker 2: something that has to be flexible to your reality. Will
Speaker 2: you tell us about that? What does it mean to
Speaker 2: be intimate?
Speaker 1: For me? The little things? Now, if we get a
Speaker 1: chance to sit together on the couch and watch a movie,
Speaker 1: will hold hands just so that we have some kind
Speaker 1: of physical connection when we sleep at night, Quite often
Speaker 1: we'll just hold hands when we're lying in bed. It's
Speaker 1: just like the things that a lot of people take
Speaker 1: for granted. Those are the things that get reframed as
Speaker 1: our intimate times. We don't do the whole dating thing
Speaker 1: like other couples do a lot of times. So we
Speaker 1: need to go to the store and get paper, towels
Speaker 1: and toilet paper. Okay, that's a date. We're going to
Speaker 1: go and maybe we'll get an ice cream or something,
Speaker 1: either going or coming back, and that's it right there.
Speaker 5: Yeah.
Speaker 2: I really love that. I fully agree. There's also, of course,
Speaker 2: like the traditional definition of physical intimacy, which is for
Speaker 2: a lot of people saying that is like a very
Speaker 2: physical need or a desire. Is there anything that you
Speaker 2: have found that has worked in your marriage for how
Speaker 2: you both approach that part of your relationship knowing that
Speaker 2: chronic migraine can affect that at any moment.
Speaker 1: Yeah, don't want to sound cold about things, but we
Speaker 1: kind of plan things out. Yeah, we know we're going
Speaker 1: to go away for this weekend and we're going to
Speaker 1: just do something that we both enjoy, go look at
Speaker 1: antiques or something like that. But we know that we're
Speaker 1: going to be by ourselves, so that opportunity to have
Speaker 1: that physical intimacy is definitely going to be there. Whether
Speaker 1: you know, my head, my body and her head and
Speaker 1: her body will all sync up at that time. Maybe
Speaker 1: it happens, and maybe it doesn't, and it's like we're
Speaker 1: past the point where it's I don't really get upset
Speaker 1: about it anymore. Yeah, she doesn't get upset about it anymore.
Speaker 1: It just is what it is. We just we really
Speaker 1: focus on trying to appreciate the time that we have
Speaker 1: together and the like something that's soothing for both of
Speaker 1: us is shower time. Yeah, that's always been like a
Speaker 1: time for us to be together and to relax and
Speaker 1: we can decompress.
Speaker 2: I also think that there's something too, like the scheduling
Speaker 2: aspect of it. I think you are getting to this
Speaker 2: point like even that can build up in anticipation more
Speaker 2: than just the maybe it'll happen, maybe it won't. So
Speaker 2: I love that. I love that, and I love your relationship,
Speaker 2: which is why I am so glad that we get
Speaker 2: to bring your wife into this conversation. Before we meet
Speaker 2: Tom's wife, Cheryl, I'm going to check in with doctor Rhin. Okay,
Speaker 2: I want to bring you back into the conversation here,
Speaker 2: doctor Ryan. Tom has brought up some really good ideas
Speaker 2: around how we can reframe our definition of intimacy and
Speaker 2: be more intentional with scheduling time for intimacy with our partner,
Speaker 2: with the goal of creating a partnership that can accommodate
Speaker 2: migraine attacks. But the current underneath all of this is
Speaker 2: around the stigmas that are faced by people living with
Speaker 2: chronic migraine and how they have to mask their experience
Speaker 2: to fit in. So let's refresh people's memories a bit.
Speaker 2: What are some of the most common stigmas you hear
Speaker 2: about from your patients.
Speaker 4: Nora, The stigma that breaks my heart the most is
Speaker 4: that people don't trust the migraine patient. They think that
Speaker 4: they're faking it. They think that they're faking the intensity
Speaker 4: of the illness or the impact that the disability has
Speaker 4: on their everyday life. Worse than that, patients are often
Speaker 4: made to feel like they're scapegoaded, that their illness is
Speaker 4: there for personal gain or personal preference, as ridiculous as
Speaker 4: that sounds. Their coworkers make them feel like they're using
Speaker 4: chronic migraine diagnosis to avoid work or to work less.
Speaker 4: Their partners sometimes make them feel like they're using their
Speaker 4: diagnosis to avoid intimate encounters. Family members make them feel
Speaker 4: like they're using their diagnosis to avoid family responsibilities or
Speaker 4: even family interactions, which is the exact opposite of what
Speaker 4: these patients really feel and want. What we end up
Speaker 4: then with is an impact that isolates people living with
Speaker 4: chronic migraine even further. It keeps them from developing open
Speaker 4: and honest communication around what they're experiencing.
Speaker 2: Yeah, I would imagine that seeing and feeling these stigmas
Speaker 2: every day would make you hesitant to be vulnerable and
Speaker 2: to share your story with other people and even with
Speaker 2: your doctor. Is this a factor in why you've seen
Speaker 2: people has to seek care and what other reasons have
Speaker 2: you seen that makes people hesitate a.
Speaker 4: Bit nor this blows in my mind. A couple of
Speaker 4: years ago, study came out that found that nearly half
Speaker 4: of people with migraine hesitate to seek care. It's a
Speaker 4: huge number and sadly not surprising. In the study, they
Speaker 4: also try to get a better picture of why those
Speaker 4: people hesitated. What they found was that over a third
Speaker 4: of those people said that they hesitated because they were
Speaker 4: afraid their symptoms weren't going to be taken seriously. And
Speaker 4: it's sad to see for me and my practice. I mean,
Speaker 4: they're internalizing all of the questioning that they've received their
Speaker 4: whole life about whether or not their disease is legitimate,
Speaker 4: are they really having symptoms? Are the symptoms that bad?
Speaker 4: And they're afraid that they're not going to have their
Speaker 4: needs met again when they finally do get the chance
Speaker 4: to see the physician. They're scared of the cynicism and disbelief.
Speaker 4: They're scared of the stigma that they've experienced already. And
Speaker 4: it's why I try so hard to save space for
Speaker 4: them when they do share their story at the very
Speaker 4: beginning of the relationship that we're building. Clinically, it's really
Speaker 4: important for that treatment journey, but it's also really important
Speaker 4: for them to have that level of trust.
Speaker 2: All right, thanks doctor Ryan. After the break, we'll get
Speaker 2: back to the conversation and meet Tom's wife, Cheryl. It's
Speaker 2: time to bring Cheryl into the chat.
Speaker 5: Hi, Nora, it's great to be here. Thanks for having me.
Speaker 2: Cheryl. It's so good to meet you, and I am
Speaker 2: grateful that our audience gets to hear about this partnership
Speaker 2: that you two have and that you have built and
Speaker 2: that you have maintained, and that you've been able to
Speaker 2: navigate this experience and stay close to each other through
Speaker 2: all of this. A lot of a relationship comes down
Speaker 2: to communication. How do you to communicate, check in with
Speaker 2: each other, and stay connected.
Speaker 5: So, yes, the answer to your question, we just have
Speaker 5: to feel it out. Because he'll pretend he doesn't have
Speaker 5: a headache, or he'll take medicine and say, oh, I'm fine,
Speaker 5: and I'll be like, are you sure, because you're acting
Speaker 5: like I really don't want to be with you right now,
Speaker 5: And of course I understand that being uncomfortable makes those
Speaker 5: times difficult. And then I was chuckling to myself because
Speaker 5: we went away for our anniversary last year and we
Speaker 5: thought we'd be together, and first day we're there, I'm like, honey,
Speaker 5: I'm getting an aura and I had a migrant attack
Speaker 5: for two days and we're just like those times we
Speaker 5: were just laying in bed together and I was listening
Speaker 5: to a movie and he was watching the movie, and
Speaker 5: so it was flip sides. We just worked through it.
Speaker 5: So intimacy is more than a feeling. It's part of
Speaker 5: a being who you are and that you're together.
Speaker 2: Yeah, that's really beautiful and I love that you just
Speaker 2: you talked about the example of you're going away for
Speaker 2: your anniversary. Everyone thinks the anniversary trip is going to
Speaker 2: be the time that's the most relatable thing. We're going
Speaker 2: away together, we're celebrating, you're getting a migrant attack, you're
Speaker 2: listening to a movie. Now, Like, I don't think that
Speaker 2: there's anything more relatable than that. Whether or not you
Speaker 2: experience chronic migraine, like the expectations versus reality require, it
Speaker 2: just requires a lot of flexibility. It requires like that
Speaker 2: deeper intimacy that you're talking about, which is compassion for
Speaker 2: each other and compassion for yourselves. I want to talk
Speaker 2: about how you've navigated those not tonight moments, because I
Speaker 2: think that's a hard thing. It's a hard thing for
Speaker 2: somebody to say. At times, it's a hard thing for
Speaker 2: somebody to hear as well.
Speaker 5: It's really funny because my chronic migraine, I had four
Speaker 5: or five migraine attacks a week. Fortunately Tom didn't have migraine.
Speaker 5: Then for me, it'd be like, I've taken care of
Speaker 5: all the kids today, I've vomited like four times today.
Speaker 5: I feel ugly, like I don't want to do anything.
Speaker 5: And he, believe it or not, has it that is
Speaker 5: in him all the time because he always wants me
Speaker 5: to be happy as well.
Speaker 2: Yeah, so now it's the flip.
Speaker 5: Side, and women are a little different than men. Meant
Speaker 5: to strive to be more intimate and women are like,
Speaker 5: oh okay, I can sleep tonight. So for us, like
Speaker 5: Tom said, we could sit on the couch and hold
Speaker 5: hands and just snuggle and they'll be okay, and he'll
Speaker 5: apologize to me, and I'm like, there's no need to apologize.
Speaker 5: I loved just sitting there and watching the movie with you,
Speaker 5: or having you lay there and snore. Either way, I
Speaker 5: know that he's here, so I'm just grateful that I
Speaker 5: have him snoring next to me, or with an ice
Speaker 5: pack or whatever.
Speaker 2: So in world where media often presents one version of
Speaker 2: intimacy above all others, this is a softer form of it.
Speaker 2: It's one that respects the bodies don't always do what
Speaker 2: we want them to do, and that love and connection
Speaker 2: can take many forms. Tom, I want to ask you,
Speaker 2: there's a lot culturally, there's a lot of pressure as
Speaker 2: a man to not, oh, don't experience any vulnerability and
Speaker 2: weakness in quotation marks. Certainly don't talk about it if
Speaker 2: you are experiencing it, and it's very toxic. It's very
Speaker 2: toxic to men, it's toxic to the people they love.
Speaker 2: And there's so much strength to be found, like inner strength,
Speaker 2: but also connection with other people in sharing those experiences openly.
Speaker 2: Can you talk to us about that?
Speaker 1: Yeah, I just you just happen to get to the
Speaker 1: point where I was able to do that because your
Speaker 1: work with a group of people, you're talking with your
Speaker 1: supervisor or something like that, and they're used to you
Speaker 1: being very on top of things, very sharp. And one
Speaker 1: of my bosses used to tell me it didn't hire
Speaker 1: you for anything, but the space between your ears. He says,
Speaker 1: I want that three inches between your ears. That's great,
Speaker 1: but during a migraine attack, I'm not at my best
Speaker 1: at that point in time. I just had to come
Speaker 1: to the realization that I could try and quote man
Speaker 1: up and try and cover it up and put on
Speaker 1: the little happy face or whatever and say, oh no,
Speaker 1: I'm fine, I've got this. I've got that. I'm also
Speaker 1: the kind of person where if I'm going to do something,
Speaker 1: I like to try and do it at the best
Speaker 1: level that I can. And I just knew that wasn't happening.
Speaker 1: I could just feel it in myself. See, yeah, I
Speaker 1: see that this project is done, but I could have
Speaker 1: done better. But I just don't know how I could
Speaker 1: have done better. So it was like, I have to
Speaker 1: start telling the people that work with me, telling the
Speaker 1: people that are above me. I've been seeing a doctor
Speaker 1: about this, and this is how it has to be
Speaker 1: for me, and I'd like you guys to be on
Speaker 1: board with it. So it's like it was very difficult.
Speaker 1: I lived on fmla intermittent leave for three years at
Speaker 1: the end of my career. It was a tough conversation
Speaker 1: to have because I had to admit to myself that
Speaker 1: you're not who you were. That person is no longer
Speaker 1: viable in your life. So I had to kind of
Speaker 1: recreate myself and repurpose myself into something else. And that's
Speaker 1: when I found migrain dot Com and I submitted some
Speaker 1: writing and they liked it and they brought me on
Speaker 1: to do some content for them, and that really allowed
Speaker 1: me to kind of repurpose myself. Now I can help
Speaker 1: another set of people by sharing my experience and just
Speaker 1: trying it to be open, honest, and, as I guess, vulnerable,
Speaker 1: because it's one of those things that's if I'm suffering,
Speaker 1: then other people are suffering. But what I've learned with
Speaker 1: chronic migraine is that you can talk to ten different
Speaker 1: people and they're going to have ten different angles on
Speaker 1: how it impacts their life.
Speaker 2: Okay, doctor Ryan, how much do you love these two?
Speaker 2: They are like the shining stars of the migraine classroom. Now.
Speaker 2: I always love hearing your thoughts on how people living
Speaker 2: with chronic migraine could approach doctors and their workplaces with
Speaker 2: this conversation, but we have never really talked about how
Speaker 2: they could approach their partners, their spouses, their boyfriends, their girlfriends.
Speaker 2: Do you have any numbers that help illustrate how hesitant
Speaker 2: people are to share their migraine experience and how do
Speaker 2: you try to help them navigate these conversations with their partners?
Speaker 4: Nora, This is I think the piece that helps these
Speaker 4: patients realize that they are not alone. So there are
Speaker 4: and unfortunately, the first one is really concerning. There was
Speaker 4: a large observational study that was done with almost twelve
Speaker 4: thousand episodic and chronic migraine respondents, So a huge study
Speaker 4: that basically showed that the closer you are in a
Speaker 4: relationship to someone who experienced migraine attacks, the more stigmatizing
Speaker 4: your attitude is toward them. So the closer that you are,
Speaker 4: the worst that you're treating that individual that suffers with migraine.
Speaker 4: Of the twelve thousand people with both episodic and chronic
Speaker 4: migraine that were surveyed, seventy percent endorsed a stigma toward
Speaker 4: individuals living with migraine. So these people were asked, who
Speaker 4: had a relationship with someone who had either episodic or
Speaker 4: chronic migraine, do you do stigmatizing things to that person?
Speaker 4: And seventy percent of them said yes, and this was
Speaker 4: more common in those responds who had even closer relationships
Speaker 4: through a partnership or family relationship, a friendship to those
Speaker 4: that were living with migraine clinically. The way that we
Speaker 4: address this in my office, Nora, is that we put
Speaker 4: it all out in the open, that they made an
Speaker 4: awesome choice in coming to seek care, and we validate
Speaker 4: their experience. Finally, and really importantly, after we have that
Speaker 4: sort of bridge to trust and understanding, look toward exploring
Speaker 4: treatment options with really specific goals in mine.
Speaker 2: All right, let's get back to Tom. Tom, you said something
Speaker 2: earlier that I want to revisit, which is you had
Speaker 2: to disassemble who you thought you were and what your
Speaker 2: life was going to be like and rebuild that. I imagine
Speaker 2: that had to be pretty hard emotionally. How did that
Speaker 2: feel for you? And then, Cheryl, I want to hear
Speaker 2: how that felt for you watching Tom go through that.
Speaker 1: For me, it was a very emotional thing for me
Speaker 1: because I had always been the provider and I got
Speaker 1: to the point where it's I just I couldn't do
Speaker 1: that anymore, at least not to the level that I
Speaker 1: thought that I could do, and it was a hard
Speaker 1: transition to make, but my wife was there to support me,
Speaker 1: and we knew where things were going to be going,
Speaker 1: and we planned the best way that we could to
Speaker 1: make a way for the future. I made concessions to
Speaker 1: pull back out of my career and go on disability,
Speaker 1: and she made plans to step back up into the
Speaker 1: out of the home workforce. I have to be real
Speaker 1: about it. I have to be honest and to set
Speaker 1: myself aside. And I tried not to project the emotion
Speaker 1: that I'm feeling on the people around me and people
Speaker 1: in my family and things like that, but sometimes it's
Speaker 1: just how it is.
Speaker 5: So as I'm sitting in listening to all of this
Speaker 5: and I'm thinking and thinking of my answer, I can
Speaker 5: recall when he first started getting his migrant attacks, he
Speaker 5: missed out on a daddy daughter dance with his daughter,
Speaker 5: and we have pictures of someone who stepped in for him,
Speaker 5: and he felt really bad about it, but he just
Speaker 5: couldn't bring himself to do it. And that was the
Speaker 5: first time where I'm like, this has to be a
Speaker 5: debilitating feeling, like he can't make himself go to a
Speaker 5: daddy daughter dinner that's only two hours long, you know,
Speaker 5: So that's when you're like, maybe there is something a
Speaker 5: little more to this headache than it being just a headache.
Speaker 5: It wasn't until about six years ago that I really
Speaker 5: started to realize that he really was struggling trying to
Speaker 5: keep his head on top of the cheese per se.
Speaker 5: And Christmas was coming and we're pretty good financially with
Speaker 5: our money and spending it wisely and everything. But I
Speaker 5: went up to a local department store and I went in.
Speaker 5: I'll never forget it. I went in for my interview
Speaker 5: and I just broke down tears, and the lady was like,
Speaker 5: and I'm like, look, I'm not asking you to hire
Speaker 5: me because I'm crying, but I'm like, my husband has
Speaker 5: chronic migraine, and I don't want you to hire me
Speaker 5: because my husband has chronic migraine. I may call out
Speaker 5: a couple of times because of that, but I'm like,
Speaker 5: I'm just trying to get back into the workforce. And
Speaker 5: they did hire me, which was amazing because I was
Speaker 5: bawling like a baby. But it wasn't until then that
Speaker 5: I realized that this is now who I am redefined
Speaker 5: as like I'm the person that's going to have to
Speaker 5: provide or whatever. So we're walking into a different era.
Speaker 5: So that's one of the realizations that we have as well,
Speaker 5: and he understands that, and so that's a lot on
Speaker 5: my shoulders.
Speaker 2: Yeah, I think it's really beautiful for people to hear
Speaker 2: that any relationship can change any Yeah, it's like you
Speaker 2: change that changes the marriage, the marriage changes you, you
Speaker 2: change each other, like it's all just constant evolution. I
Speaker 2: think that's really valuable for people to hear. Tom. I
Speaker 2: want to and by talking about the writing that you've done,
Speaker 2: what does it feel like to hear from people who
Speaker 2: have read your story and connected with it?
Speaker 1: It feels good and I'm very grateful that they acknowledge
Speaker 1: that I've written something that resonates with them. It just
Speaker 1: it gives me a good feeling. It reinforces the new
Speaker 1: purpose that I have, that I can touch other people
Speaker 1: that are not even in my area and stuff like that.
Speaker 1: I think I've developed maybe the most meaningful connections with
Speaker 1: some of the people that are across the world. I've
Speaker 1: connected with someone from Germany and what I wrote impacted him,
Speaker 1: and the comments that he wrote in response to what
Speaker 1: I had written resonated with me, so we traded information.
Speaker 2: And yeah, yeah, you made him feel seen. He made
Speaker 2: you feel seen, and that's so powerful and it's so
Speaker 2: valuable and so generous of you to do, Tom, And
Speaker 2: it's so generous of both of you to share so
Speaker 2: much of yourselves and your relationship with us and with
Speaker 2: our listeners. It is truly a gift. And I'm so
Speaker 2: grateful to you both for being here. So thank you,
Speaker 2: Thank you for having us.
Speaker 5: Thank you.
Speaker 2: Okay, doctor Ryan. Tom brought up something that's really important,
Speaker 2: the idea that men feel this pressure to not open
Speaker 2: up about their experience, that sharing all their symptoms or
Speaker 2: being vulnerable could be seen as being weak, and that
Speaker 2: it makes them hesitate. We've touched a bit on this before,
Speaker 2: but what do the numbers show us?
Speaker 4: Yeah, I think, Nora, it's super important for us to
Speaker 4: keep this out in front, because this really is one
Speaker 4: of the first hurdles that patients are going to experience,
Speaker 4: is that hesitancy. So the prevalence of people with migraine
Speaker 4: is significantly higher in females than in males. Studies have
Speaker 4: shown that the ratio of female to male people with
Speaker 4: migraine is roughly three to one, meaning that for every
Speaker 4: male migraine patient out there, there are three female migraine patients.
Speaker 4: The Global Burden of Disease Study is a comprehensive research
Speaker 4: effort that is consistently highlighted migraine as a leading cause
Speaker 4: of disability worldwide, and that's where this data is coming from.
Speaker 4: Migraine attacks affect more than one billion people worldwide, according
Speaker 4: to the study, women even more so so. Men with
Speaker 4: migraine generally have less severe migraine attacks, and unfortunately, what
Speaker 4: that translates into is that they're less likely to seek treatment,
Speaker 4: and if they do seek treatment, they're less likely to
Speaker 4: receive a diagnosis versus women.
Speaker 2: So, with all that in mind, are their unique challenges
Speaker 2: to men with chronic mind migraine finding care?
Speaker 4: Yeah, I look at the patients that I've treated in
Speaker 4: the past. There are several challenges. Let's take the perception
Speaker 4: and awareness. For example, men might not recognize their symptoms
Speaker 4: as migraine attacks. They might underestimate the severity of their
Speaker 4: symptoms and then ultimately dismiss what they're experiencing as you know,
Speaker 4: quote unquote just a headache. To avoid that stigma and
Speaker 4: ultimately avoid the conversation altogether, nor the bottom line is
Speaker 4: that men are less likely to talk to a doctor
Speaker 4: about their migraine attacks and about the symptoms that they're experiencing.
Speaker 2: Thank you, doctor Rian, that was truly one of the
Speaker 2: most beautiful conversations that I've had. I am so grateful
Speaker 2: for Tom for sharing everything, for Cheryl for joining in,
Speaker 2: and for them laying out so much of their relationship,
Speaker 2: their marriage, their personal and shared experiences for all of us.
Speaker 2: No two marriages are alike, just like Tom noted that
Speaker 2: no two migrain experiences are exactly alike. And I think
Speaker 2: it's so valuable to hear that reinventing yourself when you
Speaker 2: don't necessarily want to been reconfiguring your marriage, your relationship
Speaker 2: with each other, your relationship with yourself. This is necessary
Speaker 2: often and it can be beautiful. It can be beautiful
Speaker 2: even if we didn't choose it. So I hope you
Speaker 2: loved today's conversation. I know I did. Thanks for listening
Speaker 2: to the head start embracing the journey. We hope you
Speaker 2: found something worthwhile here with us today. A new coping strategy,
Speaker 2: a relatable story, the comfort of knowing you're not alone.
Speaker 2: I'm so happy to be a part of creating this
Speaker 2: community for all of us, and especially for people living
Speaker 2: with chronic migrain. If you haven't found a treatment plan
Speaker 2: that is working for you, please do reach out to
Speaker 2: your headache specialist to explore your options. I truly hope
Speaker 2: this has helped you find a bit of comfort and
Speaker 2: maybe a smile. Maybe see you next episode and stay
Speaker 2: tuned for more important safety information. The head Start Embracing
Speaker 2: the Journey is hosted by myself Norah McNerney, Executive produced
Speaker 2: by Van Shechian. Our head of post production is James Foster,
Speaker 2: our researcher is Sierra Kaiser, and our writer is John Irwin.
Speaker 2: The show is mixed by Michael Hardman, original music by
Speaker 2: Soundcat Productions and Art List.
Speaker 3: Important safety information continued. There has not been a confirmed
Speaker 3: serious case of spread of talks and effect away from
Speaker 3: the injection site. When botox has been used at the
Speaker 3: recommended dose to treat chronic migraine. Botox may cause loss
Speaker 3: of strength or general muscle weakness, vision problems, or dizziness
Speaker 3: within hours to week of receiving botox. If this happens,
Speaker 3: do not drive a car, operate machinery, or do other
Speaker 3: dangerous activities. Do not receive botox. If you are allergic
Speaker 3: to any of the ingredients in botox, see medication guide
Speaker 3: for ingredients. Had an allergic reaction to any other botchu
Speaker 3: linum toxin product, such as myoblock rhymo bochelinum toxin B
Speaker 3: disport abobochelinum toxin A, zeomin inco, botcheltem toxin A, JEVO,
Speaker 3: probochul item toxin A XVFS, daxify daxibochelnum toxin A l
Speaker 3: A n M, or lettibo letty botcheltem toxin AWLBG. This
Speaker 3: may not be a complete list of all botchelnum toxin
Speaker 3: products have a skin infection at the planned injection site.
Speaker 3: The dose of botox is not the same as or
Speaker 3: comparable to another botchulnum toxin product. Serious and or immediate
Speaker 3: allergic reactions have been reported, including itching, rash, red, itchy weltz, wheezing,
Speaker 3: asthma symptoms, dizziness or feeling faint. Get medical help right
Speaker 3: away if you experience symptoms, further injection of botox should
Speaker 3: be discontinued. Tell your doctor about all your muscle or
Speaker 3: nerve conditions, such as als or lou Gehrig's disease, Myasthenia
Speaker 3: gravis or lambert Eton syndrome, as you may be at
Speaker 3: increased risk of serious side effects, including difficulty swallowing and
Speaker 3: difficulty breathing from typical doses of botox. Tell your doctor
Speaker 3: about all your medical conditions, including if you have or
Speaker 3: have had bleeding problems, have plans to have surgery, had
Speaker 3: surgery on your face, have weakness of forehead muscles, trouble
Speaker 3: raising your eyebrows, drooping eyelids, and any other abnormal facial change.
Speaker 3: Are pregnant or plan to become pregnant. It is not
Speaker 3: known if botox can harm your unborn baby, our breastfeeding
Speaker 3: or plan to. It is not known if botox passes
Speaker 3: into breast milk. Tell your doctor about all the medicines
Speaker 3: you take, including prescription and over the counter medicines, vitamins,
Speaker 3: and herbal supplements. Using botox with certain other medicines may
Speaker 3: cause serious side effects. Do not start any new medicine
Speaker 3: until you have told your doctor that you have received
Speaker 3: botox in the past. Tell your doctor if you received
Speaker 3: any other bochulinum toxin product in the last four months.
Speaker 3: Have received injections of bochulinum toxin such as myoblock, disport, zamin, Jevo, Daxify,
Speaker 3: or Letibo in the past. This may not be a
Speaker 3: complete list of all bochulinum toxin products. Tell your doctor
Speaker 3: exactly which product you received. Have recently received an antibiotic
Speaker 3: by injection, Take muscle relaxance, take an allergy or cold medicine,
Speaker 3: take a sleep medicine, Take aspirin like products, or blood thinner.
Speaker 3: Other side effects of botox include dry mouth, discomfort or
Speaker 3: pain at the injection site, tiredness, headache, neck pain, eye
Speaker 3: problems such as double vision, blurred vision, decreased eye sight,
Speaker 3: drooping eyelids, swelling of your eyelids and dry eyes, drooping eyebrows,
Speaker 3: and upper respiratory tract infection. For more information, refer to
Speaker 3: the medication guide or talk with your doctor. You are
Speaker 3: encouraged to report negative side effects of prescription drugs to
Speaker 3: the FDA. Visit www dot FDA dot gov, slash MedWatch,
Speaker 3: or call one eight hundred FDA one zero eight eight.
Speaker 3: Please see botox full product information, including boxed warning and
Speaker 3: medication guide by clicking the link provided in the podcast description,
Speaker 3: or by visiting www dot RXABV dot com slash pdf,
Speaker 3: slash botox underscore PI dot pdf. If you are having
Speaker 3: difficulty paying for your medicine, abvmy be able to help,
Speaker 3: visit ABV dot com slash Patient Access Support to learn more.