June 3, 2025 • 37 mins
Talking about intimacy can be difficult, even with your partner. It’s nuanced. It’s often avoided. But it’s still very important. In this episode, Nora and guest Tom Picerno explore how he’s navigated these delicate conversations while living with Chronic Migraine. They’re joined by Tom’s wife, Cheryl, who adds an extra layer of perspective to how they’ve relied heavily on open communication, reframing what intimacy means to them while respecting each other’s boundaries.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Ruby.
Speaker 2 (00:08):
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 Norah Mcinernie and this is
the head start Embracing the Journey, a podcast where we'll
be taking all those things you usually say for your
(00:29):
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 ABVI, So first let's hear some important
safety information and stay tuned to the end of the
(00:51):
podcast for more.
Speaker 3 (01:00):
Indication. Botox on abochulinum toxin A is a prescription medicine
that is injected into muscles and used to prevent headaches
and adults with chronic migraine who have fifteen or more
days each month with headache lasting four or more hours
each day in people eighteen years in older. It is
not known whether botox is safe and effective to prevent
headaches in patients with migraine. Who have fourteen or fewer
(01:21):
headache days each month or 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.
(01:43):
You are at the highest risk if these problems are
pre existing 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 eyelets, coarseness or change or loss of voice,
(02:05):
trouble saying words clearly, loss of bladder control, trouble breathing,
and trouble swallowing. Please stay tuned for additional important safety
information within this podcast. Today's guests. Tom Piserno is an
actual botox patient who was on prescribed therapy when he
shared his story. Changes in therapy status may have occurred
since that time. Cheryl is not a botox patient Tom
(02:27):
and Cheryl were not compensated by ABVI for sharing their story.
Speaker 2 (02:45):
I don't know if anyone has ever told you this before,
but relationships can be hard work. It is, of course,
the work that is worth doing, showing up, communicating, learning
and relearning your own needs and another person's needs, and
then doing it all over again. This is the work
of intimacy, of letting yourself be seen and known, and
(03:10):
taking the time and effort to see and know another person.
It is rewarding, and it is exhausting, even more so
when you add chronic migraine into the equation, because it
can be hard to tend to another person when you
are in the middle of a migraine attack, and it
can be hard to let someone tend to you when
(03:31):
you just want to be left alone in a dark room.
How can you experience intimacy when one or both partners
are living with chronic illness? How do we meet the
needs of the one we love when we can barely
take care of our own. It can be hard to
talk about this publicly, which means it's important to talk
about it publicly. And that's why I'm so grateful for
(03:53):
today's guest Tom Paserno. Tom is living with chronic migraine
and his wife Cheryl experience it's hiss migraine attacks and
in the decades they've been together they met when they
were fourteen, they have learned to communicate, to adapt, and
to redefine intimacy within their own boundaries and limitations. And
(04:15):
in an act of true generosity, Tom has shared this
hard won knowledge with the migraine community, sharing his story
and moderating conversations on migrain dot com. Before we meet Tom,
a quick check in with doctor Rhyn, Doctor Ryan. It's
so good to see you.
Speaker 4 (04:34):
Again, Hey Nora. So cool to be back with you again.
Speaker 2 (04:38):
So we have some very nuanced and dare I say,
personal conversations to have today. We have explored many different
parts of the experience of living with chronic migraine, but
we have never explored how it can affect intimacy. How
often does this part of life and a patient's expe
(05:00):
experience come up in your office?
Speaker 4 (05:02):
Yeah, this issue is brought up by nearly every adult
patient in conversation around their migraine attacks and their migraine triggers.
The concerns often brought up while discussing the impact of
the symptoms and the way that that could impact their intimacy,
and so I'm really glad that we get a chance
to explore that with this episode.
Speaker 2 (05:16):
Me too. Okay, let's meet today's guest, Tom Paserno. Hi, Tom,
Hey Nora.
Speaker 1 (05:29):
It's great to be here.
Speaker 2 (05:30):
I'm so glad you're able to join us and we
can get to hear more of your story. But before
we get into that, I want to ask you about
music because I saw that you sometimes use music to
help you cope with a migraine attack, which is actually
really interesting to me because most of the people that
we've spoken to have said that they actually prefer silence
(05:53):
when they have a migraine attack. So I have to
know what kind of music helps you during a migraine
attack and is a different and from the music you
might enjoy at other times.
Speaker 1 (06:04):
I use the music that I normally listen to just
every day, so sometimes I could use anything from classical
music to more hard rocking type music.
Speaker 2 (06:17):
Hard rock.
Speaker 1 (06:19):
Yeah, I have a few favorite tunes that are on
my migraine playlist.
Speaker 2 (06:23):
So yeah, yeah, that makes sense to me. So Tom,
I want you to set the scene for us a
little bit. Can you give our listeners an example of
what a migraine attack feels like for you.
Speaker 1 (06:36):
For me, I have chronic migraine. So usually when I'm
getting a migraine attack, one of the key indicators for
me is my aura. I usually start to see my
field division like an accrescent and it starts to blur,
and that blur moves across my field division. So that's
(06:57):
when I know that I'm truly having a migraine attack.
So I know that if I'm feeling discomfort at the
same time as the aura, then I know that I'm
in for a rough ride. And if I'm driving in
a car, I immediately know I need to pull over
and I just have to wait it out and see
what happens. That's how it all starts for me, for
the most part.
Speaker 2 (07:16):
Do you have a particular moment or a particular time
when you felt that coming, Like you can feel the
migraine attack coming and you have to make an adjustment
to what your life is going to look like that day.
Speaker 1 (07:31):
Definitely, while I was still working, I had to educate
my team on what migrain was like for me so
that they can understand when they notice that I'm not
feeling like I'm not mentally engaged in what we're talking about,
so I have to bring them all up to speed.
But if I'm on my way to the workplace or
(07:54):
something like that, one of my first things after pulling
off the road if I'm driving, is I need to
notify someone where I'm going, to let them know I
was on my way. This is what's happening. If it
gets worse, I will not be there. If it improves
to the point that I can function, I will be there.
So there's a lot of education just to make my
(08:15):
life easier.
Speaker 2 (08:16):
And also, I think that kind of communication makes everybody's
life better, even the people who are around you and
not experiencing a migrain attack. I do think most people
want to be as good as possible for the people
around us. Right, Your colleagues want to know how you're
feeling so they can jump into action pick up slack
if you can't, because you would do the same for them.
Speaker 5 (08:39):
Right.
Speaker 2 (08:39):
Absolutely, I'm really appreciative of the work that you have
done being so open, and you're writing about your experience
living with chronic migrain and especially how that affects your
relationship with your wife, who also experiences migrain attacks, because
that is not easy to talk about. We don't really
(09:01):
talk about intimacy very much. You wrote that you have
started to reframe what intimacy means, knowing that it is
something that has to be flexible to your reality. Will
you tell us about that? What does it mean to
be intimate?
Speaker 1 (09:23):
For me? The little things? Now, if we get a
chance to sit together on the couch and watch a movie,
will hold hands just so that we have some kind
of physical connection when we sleep at night, Quite often
we'll just hold hands when we're lying in bed. It's
(09:45):
just like the things that a lot of people take
for granted. Those are the things that get reframed as
our intimate times. We don't do the whole dating thing
like other couples do a lot of times. So we
need to go to the store and get paper, towels
and toilet paper. Okay, that's a date. We're going to
go and maybe we'll get an ice cream or something,
either going or coming back, and that's it right there.
Speaker 5 (10:08):
Yeah.
Speaker 2 (10:09):
I really love that. I fully agree. There's also, of course,
like the traditional definition of physical intimacy, which is for
a lot of people saying that is like a very
physical need or a desire. Is there anything that you
have found that has worked in your marriage for how
(10:29):
you both approach that part of your relationship knowing that
chronic migraine can affect that at any moment.
Speaker 1 (10:38):
Yeah, don't want to sound cold about things, but we
kind of plan things out. Yeah, we know we're going
to go away for this weekend and we're going to
just do something that we both enjoy, go look at
antiques or something like that. But we know that we're
going to be by ourselves, so that opportunity to have
that physical intimacy is definitely going to be there. Whether
(11:00):
you know, my head, my body and her head and
her body will all sync up at that time. Maybe
it happens, and maybe it doesn't, and it's like we're
past the point where it's I don't really get upset
about it anymore. Yeah, she doesn't get upset about it anymore.
It just is what it is. We just we really
(11:21):
focus on trying to appreciate the time that we have
together and the like something that's soothing for both of
us is shower time. Yeah, that's always been like a
time for us to be together and to relax and
we can decompress.
Speaker 2 (11:36):
I also think that there's something too, like the scheduling
aspect of it. I think you are getting to this
point like even that can build up in anticipation more
than just the maybe it'll happen, maybe it won't. So
I love that. I love that, and I love your relationship,
which is why I am so glad that we get
(11:57):
to bring your wife into this conversation. Before we meet
Tom's wife, Cheryl, I'm going to check in with doctor Rhin. Okay,
I want to bring you back into the conversation here,
doctor Ryan. Tom has brought up some really good ideas
(12:18):
around how we can reframe our definition of intimacy and
be more intentional with scheduling time for intimacy with our partner,
with the goal of creating a partnership that can accommodate
migraine attacks. But the current underneath all of this is
around the stigmas that are faced by people living with
(12:38):
chronic migraine and how they have to mask their experience
to fit in. So let's refresh people's memories a bit.
What are some of the most common stigmas you hear
about from your patients.
Speaker 4 (12:51):
Nora, The stigma that breaks my heart the most is
that people don't trust the migraine patient. They think that
they're faking it. They think that they're faking the intensity
of the illness or the impact that the disability has
on their everyday life. Worse than that, patients are often
made to feel like they're scapegoaded, that their illness is
there for personal gain or personal preference, as ridiculous as
(13:11):
that sounds. Their coworkers make them feel like they're using
chronic migraine diagnosis to avoid work or to work less.
Their partners sometimes make them feel like they're using their
diagnosis to avoid intimate encounters. Family members make them feel
like they're using their diagnosis to avoid family responsibilities or
even family interactions, which is the exact opposite of what
(13:32):
these patients really feel and want. What we end up
then with is an impact that isolates people living with
chronic migraine even further. It keeps them from developing open
and honest communication around what they're experiencing.
Speaker 2 (13:45):
Yeah, I would imagine that seeing and feeling these stigmas
every day would make you hesitant to be vulnerable and
to share your story with other people and even with
your doctor. Is this a factor in why you've seen
people has to seek care and what other reasons have
you seen that makes people hesitate a.
Speaker 4 (14:06):
Bit nor this blows in my mind. A couple of
years ago, study came out that found that nearly half
of people with migraine hesitate to seek care. It's a
huge number and sadly not surprising. In the study, they
also try to get a better picture of why those
people hesitated. What they found was that over a third
of those people said that they hesitated because they were
afraid their symptoms weren't going to be taken seriously. And
(14:29):
it's sad to see for me and my practice. I mean,
they're internalizing all of the questioning that they've received their
whole life about whether or not their disease is legitimate,
are they really having symptoms? Are the symptoms that bad?
And they're afraid that they're not going to have their
needs met again when they finally do get the chance
to see the physician. They're scared of the cynicism and disbelief.
(14:50):
They're scared of the stigma that they've experienced already. And
it's why I try so hard to save space for
them when they do share their story at the very
beginning of the relationship that we're building. Clinically, it's really
important for that treatment journey, but it's also really important
for them to have that level of trust.
Speaker 2 (15:06):
All right, thanks doctor Ryan. After the break, we'll get
back to the conversation and meet Tom's wife, Cheryl. It's
(15:39):
time to bring Cheryl into the chat.
Speaker 5 (15:42):
Hi, Nora, it's great to be here. Thanks for having me.
Speaker 2 (15:45):
Cheryl. It's so good to meet you, and I am
grateful that our audience gets to hear about this partnership
that you two have and that you have built and
that you have maintained, and that you've been able to
navigate this experience and stay close to each other through
all of this. A lot of a relationship comes down
(16:06):
to communication. How do you to communicate, check in with
each other, and stay connected.
Speaker 5 (16:13):
So, yes, the answer to your question, we just have
to feel it out. Because he'll pretend he doesn't have
a headache, or he'll take medicine and say, oh, I'm fine,
and I'll be like, are you sure, because you're acting
like I really don't want to be with you right now,
And of course I understand that being uncomfortable makes those
(16:34):
times difficult. And then I was chuckling to myself because
we went away for our anniversary last year and we
thought we'd be together, and first day we're there, I'm like, honey,
I'm getting an aura and I had a migrant attack
for two days and we're just like those times we
were just laying in bed together and I was listening
(16:54):
to a movie and he was watching the movie, and
so it was flip sides. We just worked through it.
So intimacy is more than a feeling. It's part of
a being who you are and that you're together.
Speaker 2 (17:07):
Yeah, that's really beautiful and I love that you just
you talked about the example of you're going away for
your anniversary. Everyone thinks the anniversary trip is going to
be the time that's the most relatable thing. We're going
away together, we're celebrating, you're getting a migrant attack, you're
listening to a movie. Now, Like, I don't think that
(17:29):
there's anything more relatable than that. Whether or not you
experience chronic migraine, like the expectations versus reality require, it
just requires a lot of flexibility. It requires like that
deeper intimacy that you're talking about, which is compassion for
each other and compassion for yourselves. I want to talk
about how you've navigated those not tonight moments, because I
(17:53):
think that's a hard thing. It's a hard thing for
somebody to say. At times, it's a hard thing for
somebody to hear as well.
Speaker 5 (18:01):
It's really funny because my chronic migraine, I had four
or five migraine attacks a week. Fortunately Tom didn't have migraine.
Then for me, it'd be like, I've taken care of
all the kids today, I've vomited like four times today.
I feel ugly, like I don't want to do anything.
(18:22):
And he, believe it or not, has it that is
in him all the time because he always wants me
to be happy as well.
Speaker 2 (18:29):
Yeah, so now it's the flip.
Speaker 5 (18:30):
Side, and women are a little different than men. Meant
to strive to be more intimate and women are like,
oh okay, I can sleep tonight. So for us, like
Tom said, we could sit on the couch and hold
hands and just snuggle and they'll be okay, and he'll
apologize to me, and I'm like, there's no need to apologize.
I loved just sitting there and watching the movie with you,
(18:53):
or having you lay there and snore. Either way, I
know that he's here, so I'm just grateful that I
have him snoring next to me, or with an ice
pack or whatever.
Speaker 2 (19:04):
So in world where media often presents one version of
intimacy above all others, this is a softer form of it.
It's one that respects the bodies don't always do what
we want them to do, and that love and connection
can take many forms. Tom, I want to ask you,
there's a lot culturally, there's a lot of pressure as
a man to not, oh, don't experience any vulnerability and
(19:28):
weakness in quotation marks. Certainly don't talk about it if
you are experiencing it, and it's very toxic. It's very
toxic to men, it's toxic to the people they love.
And there's so much strength to be found, like inner strength,
but also connection with other people in sharing those experiences openly.
(19:51):
Can you talk to us about that?
Speaker 1 (19:53):
Yeah, I just you just happen to get to the
point where I was able to do that because your
work with a group of people, you're talking with your
supervisor or something like that, and they're used to you
being very on top of things, very sharp. And one
of my bosses used to tell me it didn't hire
you for anything, but the space between your ears. He says,
I want that three inches between your ears. That's great,
(20:17):
but during a migraine attack, I'm not at my best
at that point in time. I just had to come
to the realization that I could try and quote man
up and try and cover it up and put on
the little happy face or whatever and say, oh no,
I'm fine, I've got this. I've got that. I'm also
(20:37):
the kind of person where if I'm going to do something,
I like to try and do it at the best
level that I can. And I just knew that wasn't happening.
I could just feel it in myself. See, yeah, I
see that this project is done, but I could have
done better. But I just don't know how I could
have done better. So it was like, I have to
(20:58):
start telling the people that work with me, telling the
people that are above me. I've been seeing a doctor
about this, and this is how it has to be
for me, and I'd like you guys to be on
board with it. So it's like it was very difficult.
I lived on fmla intermittent leave for three years at
(21:20):
the end of my career. It was a tough conversation
to have because I had to admit to myself that
you're not who you were. That person is no longer
viable in your life. So I had to kind of
recreate myself and repurpose myself into something else. And that's
(21:40):
when I found migrain dot Com and I submitted some
writing and they liked it and they brought me on
to do some content for them, and that really allowed
me to kind of repurpose myself. Now I can help
another set of people by sharing my experience and just
(22:01):
trying it to be open, honest, and, as I guess, vulnerable,
because it's one of those things that's if I'm suffering,
then other people are suffering. But what I've learned with
chronic migraine is that you can talk to ten different
people and they're going to have ten different angles on
how it impacts their life.
Speaker 2 (22:30):
Okay, doctor Ryan, how much do you love these two?
They are like the shining stars of the migraine classroom. Now.
I always love hearing your thoughts on how people living
with chronic migraine could approach doctors and their workplaces with
this conversation, but we have never really talked about how
they could approach their partners, their spouses, their boyfriends, their girlfriends.
(22:53):
Do you have any numbers that help illustrate how hesitant
people are to share their migraine experience and how do
you try to help them navigate these conversations with their partners?
Speaker 4 (23:04):
Nora, This is I think the piece that helps these
patients realize that they are not alone. So there are
and unfortunately, the first one is really concerning. There was
a large observational study that was done with almost twelve
thousand episodic and chronic migraine respondents, So a huge study
that basically showed that the closer you are in a
(23:25):
relationship to someone who experienced migraine attacks, the more stigmatizing
your attitude is toward them. So the closer that you are,
the worst that you're treating that individual that suffers with migraine.
Of the twelve thousand people with both episodic and chronic
migraine that were surveyed, seventy percent endorsed a stigma toward
individuals living with migraine. So these people were asked, who
(23:47):
had a relationship with someone who had either episodic or
chronic migraine, do you do stigmatizing things to that person?
And seventy percent of them said yes, and this was
more common in those responds who had even closer relationships
through a partnership or family relationship, a friendship to those
that were living with migraine clinically. The way that we
(24:08):
address this in my office, Nora, is that we put
it all out in the open, that they made an
awesome choice in coming to seek care, and we validate
their experience. Finally, and really importantly, after we have that
sort of bridge to trust and understanding, look toward exploring
treatment options with really specific goals in mine.
Speaker 2 (24:23):
All right, let's get back to Tom. Tom, you said something
earlier that I want to revisit, which is you had
to disassemble who you thought you were and what your
life was going to be like and rebuild that. I imagine
(24:43):
that had to be pretty hard emotionally. How did that
feel for you? And then, Cheryl, I want to hear
how that felt for you watching Tom go through that.
Speaker 1 (24:56):
For me, it was a very emotional thing for me
because I had always been the provider and I got
to the point where it's I just I couldn't do
that anymore, at least not to the level that I
thought that I could do, and it was a hard
transition to make, but my wife was there to support me,
(25:20):
and we knew where things were going to be going,
and we planned the best way that we could to
make a way for the future. I made concessions to
pull back out of my career and go on disability,
and she made plans to step back up into the
out of the home workforce. I have to be real
(25:42):
about it. I have to be honest and to set
myself aside. And I tried not to project the emotion
that I'm feeling on the people around me and people
in my family and things like that, but sometimes it's
just how it is.
Speaker 5 (25:58):
So as I'm sitting in listening to all of this
and I'm thinking and thinking of my answer, I can
recall when he first started getting his migrant attacks, he
missed out on a daddy daughter dance with his daughter,
and we have pictures of someone who stepped in for him,
and he felt really bad about it, but he just
(26:18):
couldn't bring himself to do it. And that was the
first time where I'm like, this has to be a
debilitating feeling, like he can't make himself go to a
daddy daughter dinner that's only two hours long, you know,
So that's when you're like, maybe there is something a
(26:39):
little more to this headache than it being just a headache.
It wasn't until about six years ago that I really
started to realize that he really was struggling trying to
keep his head on top of the cheese per se.
And Christmas was coming and we're pretty good financially with
our money and spending it wisely and everything. But I
(27:02):
went up to a local department store and I went in.
I'll never forget it. I went in for my interview
and I just broke down tears, and the lady was like,
and I'm like, look, I'm not asking you to hire
me because I'm crying, but I'm like, my husband has
chronic migraine, and I don't want you to hire me
(27:23):
because my husband has chronic migraine. I may call out
a couple of times because of that, but I'm like,
I'm just trying to get back into the workforce. And
they did hire me, which was amazing because I was
bawling like a baby. But it wasn't until then that
I realized that this is now who I am redefined
as like I'm the person that's going to have to
(27:45):
provide or whatever. So we're walking into a different era.
So that's one of the realizations that we have as well,
and he understands that, and so that's a lot on
my shoulders.
Speaker 2 (27:55):
Yeah, I think it's really beautiful for people to hear
that any relationship can change any Yeah, it's like you
change that changes the marriage, the marriage changes you, you
change each other, like it's all just constant evolution. I
think that's really valuable for people to hear. Tom. I
want to and by talking about the writing that you've done,
(28:16):
what does it feel like to hear from people who
have read your story and connected with it?
Speaker 1 (28:24):
It feels good and I'm very grateful that they acknowledge
that I've written something that resonates with them. It just
it gives me a good feeling. It reinforces the new
purpose that I have, that I can touch other people
that are not even in my area and stuff like that.
(28:47):
I think I've developed maybe the most meaningful connections with
some of the people that are across the world. I've
connected with someone from Germany and what I wrote impacted him,
and the comments that he wrote in response to what
I had written resonated with me, so we traded information.
Speaker 2 (29:09):
And yeah, yeah, you made him feel seen. He made
you feel seen, and that's so powerful and it's so
valuable and so generous of you to do, Tom, And
it's so generous of both of you to share so
much of yourselves and your relationship with us and with
our listeners. It is truly a gift. And I'm so
(29:30):
grateful to you both for being here. So thank you,
Thank you for having us.
Speaker 5 (29:34):
Thank you.
Speaker 2 (29:37):
Okay, doctor Ryan. Tom brought up something that's really important,
the idea that men feel this pressure to not open
up about their experience, that sharing all their symptoms or
being vulnerable could be seen as being weak, and that
it makes them hesitate. We've touched a bit on this before,
(29:59):
but what do the numbers show us?
Speaker 4 (30:02):
Yeah, I think, Nora, it's super important for us to
keep this out in front, because this really is one
of the first hurdles that patients are going to experience,
is that hesitancy. So the prevalence of people with migraine
is significantly higher in females than in males. Studies have
shown that the ratio of female to male people with
migraine is roughly three to one, meaning that for every
male migraine patient out there, there are three female migraine patients.
(30:23):
The Global Burden of Disease Study is a comprehensive research
effort that is consistently highlighted migraine as a leading cause
of disability worldwide, and that's where this data is coming from.
Migraine attacks affect more than one billion people worldwide, according
to the study, women even more so so. Men with
migraine generally have less severe migraine attacks, and unfortunately, what
(30:44):
that translates into is that they're less likely to seek treatment,
and if they do seek treatment, they're less likely to
receive a diagnosis versus women.
Speaker 2 (30:52):
So, with all that in mind, are their unique challenges
to men with chronic mind migraine finding care?
Speaker 4 (31:02):
Yeah, I look at the patients that I've treated in
the past. There are several challenges. Let's take the perception
and awareness. For example, men might not recognize their symptoms
as migraine attacks. They might underestimate the severity of their
symptoms and then ultimately dismiss what they're experiencing as you know,
quote unquote just a headache. To avoid that stigma and
ultimately avoid the conversation altogether, nor the bottom line is
(31:24):
that men are less likely to talk to a doctor
about their migraine attacks and about the symptoms that they're experiencing.
Speaker 2 (31:30):
Thank you, doctor Rian, that was truly one of the
most beautiful conversations that I've had. I am so grateful
for Tom for sharing everything, for Cheryl for joining in,
and for them laying out so much of their relationship,
their marriage, their personal and shared experiences for all of us.
(31:54):
No two marriages are alike, just like Tom noted that
no two migrain experiences are exactly alike. And I think
it's so valuable to hear that reinventing yourself when you
don't necessarily want to been reconfiguring your marriage, your relationship
(32:19):
with each other, your relationship with yourself. This is necessary
often and it can be beautiful. It can be beautiful
even if we didn't choose it. So I hope you
loved today's conversation. I know I did. Thanks for listening
to the head start embracing the journey. We hope you
(32:39):
found something worthwhile here with us today. A new coping strategy,
a relatable story, the comfort of knowing you're not alone.
I'm so happy to be a part of creating this
community for all of us, and especially for people living
with chronic migrain. If you haven't found a treatment plan
that is working for you, please do reach out to
(33:00):
your headache specialist to explore your options. I truly hope
this has helped you find a bit of comfort and
maybe a smile. Maybe see you next episode and stay
tuned for more important safety information. The head Start Embracing
the Journey is hosted by myself Norah McNerney, Executive produced
(33:21):
by Van Shechian. Our head of post production is James Foster,
our researcher is Sierra Kaiser, and our writer is John Irwin.
The show is mixed by Michael Hardman, original music by
Soundcat Productions and Art List.
Speaker 3 (33:41):
Important safety information continued. There has not been a confirmed
serious case of spread of talks and effect away from
the injection site. When botox has been used at the
recommended dose to treat chronic migraine. Botox may cause loss
of strength or general muscle weakness, vision problems, or dizziness
within hours to week of receiving botox. If this happens,
(34:02):
do not drive a car, operate machinery, or do other
dangerous activities. Do not receive botox. If you are allergic
to any of the ingredients in botox, see medication guide
for ingredients. Had an allergic reaction to any other botchu
linum toxin product, such as myoblock rhymo bochelinum toxin B
disport abobochelinum toxin A, zeomin inco, botcheltem toxin A, JEVO,
(34:26):
probochul item toxin A XVFS, daxify daxibochelnum toxin A l
A n M, or lettibo letty botcheltem toxin AWLBG. This
may not be a complete list of all botchelnum toxin
products have a skin infection at the planned injection site.
The dose of botox is not the same as or
comparable to another botchulnum toxin product. Serious and or immediate
(34:51):
allergic reactions have been reported, including itching, rash, red, itchy weltz, wheezing,
asthma symptoms, dizziness or feeling faint. Get medical help right
away if you experience symptoms, further injection of botox should
be discontinued. Tell your doctor about all your muscle or
nerve conditions, such as als or lou Gehrig's disease, Myasthenia
(35:12):
gravis or lambert Eton syndrome, as you may be at
increased risk of serious side effects, including difficulty swallowing and
difficulty breathing from typical doses of botox. Tell your doctor
about all your medical conditions, including if you have or
have had bleeding problems, have plans to have surgery, had
surgery on your face, have weakness of forehead muscles, trouble
(35:33):
raising your eyebrows, drooping eyelids, and any other abnormal facial change.
Are pregnant or plan to become pregnant. It is not
known if botox can harm your unborn baby, our breastfeeding
or plan to. It is not known if botox passes
into breast milk. Tell your doctor about all the medicines
you take, including prescription and over the counter medicines, vitamins,
and herbal supplements. Using botox with certain other medicines may
(35:56):
cause serious side effects. Do not start any new medicine
until you have told your doctor that you have received
botox in the past. Tell your doctor if you received
any other bochulinum toxin product in the last four months.
Have received injections of bochulinum toxin such as myoblock, disport, zamin, Jevo, Daxify,
or Letibo in the past. This may not be a
(36:18):
complete list of all bochulinum toxin products. Tell your doctor
exactly which product you received. Have recently received an antibiotic
by injection, Take muscle relaxance, take an allergy or cold medicine,
take a sleep medicine, Take aspirin like products, or blood thinner.
Other side effects of botox include dry mouth, discomfort or
pain at the injection site, tiredness, headache, neck pain, eye
(36:41):
problems such as double vision, blurred vision, decreased eye sight,
drooping eyelids, swelling of your eyelids and dry eyes, drooping eyebrows,
and upper respiratory tract infection. For more information, refer to
the medication guide or talk with your doctor. You are
encouraged to report negative side effects of prescription drugs to
the FDA. Visit www dot FDA dot gov, slash MedWatch,
(37:04):
or call one eight hundred FDA one zero eight eight.
Please see botox full product information, including boxed warning and
medication guide by clicking the link provided in the podcast description,
or by visiting www dot RXABV dot com slash pdf,
slash botox underscore PI dot pdf. If you are having
(37:26):
difficulty paying for your medicine, abvmy be able to help,
visit ABV dot com slash Patient Access Support to learn more.
Ruby.
Speaker 2 (00:08):
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 Norah Mcinernie and this is
the head start Embracing the Journey, a podcast where we'll
be taking all those things you usually say for your
(00:29):
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 ABVI, So first let's hear some important
safety information and stay tuned to the end of the
(00:51):
podcast for more.
Speaker 3 (01:00):
Indication. Botox on abochulinum toxin A is a prescription medicine
that is injected into muscles and used to prevent headaches
and adults with chronic migraine who have fifteen or more
days each month with headache lasting four or more hours
each day in people eighteen years in older. It is
not known whether botox is safe and effective to prevent
headaches in patients with migraine. Who have fourteen or fewer
(01:21):
headache days each month or 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.
(01:43):
You are at the highest risk if these problems are
pre existing 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 eyelets, coarseness or change or loss of voice,
(02:05):
trouble saying words clearly, loss of bladder control, trouble breathing,
and trouble swallowing. Please stay tuned for additional important safety
information within this podcast. Today's guests. Tom Piserno is an
actual botox patient who was on prescribed therapy when he
shared his story. Changes in therapy status may have occurred
since that time. Cheryl is not a botox patient Tom
(02:27):
and Cheryl were not compensated by ABVI for sharing their story.
Speaker 2 (02:45):
I don't know if anyone has ever told you this before,
but relationships can be hard work. It is, of course,
the work that is worth doing, showing up, communicating, learning
and relearning your own needs and another person's needs, and
then doing it all over again. This is the work
of intimacy, of letting yourself be seen and known, and
(03:10):
taking the time and effort to see and know another person.
It is rewarding, and it is exhausting, even more so
when you add chronic migraine into the equation, because it
can be hard to tend to another person when you
are in the middle of a migraine attack, and it
can be hard to let someone tend to you when
(03:31):
you just want to be left alone in a dark room.
How can you experience intimacy when one or both partners
are living with chronic illness? How do we meet the
needs of the one we love when we can barely
take care of our own. It can be hard to
talk about this publicly, which means it's important to talk
about it publicly. And that's why I'm so grateful for
(03:53):
today's guest Tom Paserno. Tom is living with chronic migraine
and his wife Cheryl experience it's hiss migraine attacks and
in the decades they've been together they met when they
were fourteen, they have learned to communicate, to adapt, and
to redefine intimacy within their own boundaries and limitations. And
(04:15):
in an act of true generosity, Tom has shared this
hard won knowledge with the migraine community, sharing his story
and moderating conversations on migrain dot com. Before we meet Tom,
a quick check in with doctor Rhyn, Doctor Ryan. It's
so good to see you.
Speaker 4 (04:34):
Again, Hey Nora. So cool to be back with you again.
Speaker 2 (04:38):
So we have some very nuanced and dare I say,
personal conversations to have today. We have explored many different
parts of the experience of living with chronic migraine, but
we have never explored how it can affect intimacy. How
often does this part of life and a patient's expe
(05:00):
experience come up in your office?
Speaker 4 (05:02):
Yeah, this issue is brought up by nearly every adult
patient in conversation around their migraine attacks and their migraine triggers.
The concerns often brought up while discussing the impact of
the symptoms and the way that that could impact their intimacy,
and so I'm really glad that we get a chance
to explore that with this episode.
Speaker 2 (05:16):
Me too. Okay, let's meet today's guest, Tom Paserno. Hi, Tom,
Hey Nora.
Speaker 1 (05:29):
It's great to be here.
Speaker 2 (05:30):
I'm so glad you're able to join us and we
can get to hear more of your story. But before
we get into that, I want to ask you about
music because I saw that you sometimes use music to
help you cope with a migraine attack, which is actually
really interesting to me because most of the people that
we've spoken to have said that they actually prefer silence
(05:53):
when they have a migraine attack. So I have to
know what kind of music helps you during a migraine
attack and is a different and from the music you
might enjoy at other times.
Speaker 1 (06:04):
I use the music that I normally listen to just
every day, so sometimes I could use anything from classical
music to more hard rocking type music.
Speaker 2 (06:17):
Hard rock.
Speaker 1 (06:19):
Yeah, I have a few favorite tunes that are on
my migraine playlist.
Speaker 2 (06:23):
So yeah, yeah, that makes sense to me. So Tom,
I want you to set the scene for us a
little bit. Can you give our listeners an example of
what a migraine attack feels like for you.
Speaker 1 (06:36):
For me, I have chronic migraine. So usually when I'm
getting a migraine attack, one of the key indicators for
me is my aura. I usually start to see my
field division like an accrescent and it starts to blur,
and that blur moves across my field division. So that's
(06:57):
when I know that I'm truly having a migraine attack.
So I know that if I'm feeling discomfort at the
same time as the aura, then I know that I'm
in for a rough ride. And if I'm driving in
a car, I immediately know I need to pull over
and I just have to wait it out and see
what happens. That's how it all starts for me, for
the most part.
Speaker 2 (07:16):
Do you have a particular moment or a particular time
when you felt that coming, Like you can feel the
migraine attack coming and you have to make an adjustment
to what your life is going to look like that day.
Speaker 1 (07:31):
Definitely, while I was still working, I had to educate
my team on what migrain was like for me so
that they can understand when they notice that I'm not
feeling like I'm not mentally engaged in what we're talking about,
so I have to bring them all up to speed.
But if I'm on my way to the workplace or
(07:54):
something like that, one of my first things after pulling
off the road if I'm driving, is I need to
notify someone where I'm going, to let them know I
was on my way. This is what's happening. If it
gets worse, I will not be there. If it improves
to the point that I can function, I will be there.
So there's a lot of education just to make my
(08:15):
life easier.
Speaker 2 (08:16):
And also, I think that kind of communication makes everybody's
life better, even the people who are around you and
not experiencing a migrain attack. I do think most people
want to be as good as possible for the people
around us. Right, Your colleagues want to know how you're
feeling so they can jump into action pick up slack
if you can't, because you would do the same for them.
Speaker 5 (08:39):
Right.
Speaker 2 (08:39):
Absolutely, I'm really appreciative of the work that you have
done being so open, and you're writing about your experience
living with chronic migrain and especially how that affects your
relationship with your wife, who also experiences migrain attacks, because
that is not easy to talk about. We don't really
(09:01):
talk about intimacy very much. You wrote that you have
started to reframe what intimacy means, knowing that it is
something that has to be flexible to your reality. Will
you tell us about that? What does it mean to
be intimate?
Speaker 1 (09:23):
For me? The little things? Now, if we get a
chance to sit together on the couch and watch a movie,
will hold hands just so that we have some kind
of physical connection when we sleep at night, Quite often
we'll just hold hands when we're lying in bed. It's
(09:45):
just like the things that a lot of people take
for granted. Those are the things that get reframed as
our intimate times. We don't do the whole dating thing
like other couples do a lot of times. So we
need to go to the store and get paper, towels
and toilet paper. Okay, that's a date. We're going to
go and maybe we'll get an ice cream or something,
either going or coming back, and that's it right there.
Speaker 5 (10:08):
Yeah.
Speaker 2 (10:09):
I really love that. I fully agree. There's also, of course,
like the traditional definition of physical intimacy, which is for
a lot of people saying that is like a very
physical need or a desire. Is there anything that you
have found that has worked in your marriage for how
(10:29):
you both approach that part of your relationship knowing that
chronic migraine can affect that at any moment.
Speaker 1 (10:38):
Yeah, don't want to sound cold about things, but we
kind of plan things out. Yeah, we know we're going
to go away for this weekend and we're going to
just do something that we both enjoy, go look at
antiques or something like that. But we know that we're
going to be by ourselves, so that opportunity to have
that physical intimacy is definitely going to be there. Whether
(11:00):
you know, my head, my body and her head and
her body will all sync up at that time. Maybe
it happens, and maybe it doesn't, and it's like we're
past the point where it's I don't really get upset
about it anymore. Yeah, she doesn't get upset about it anymore.
It just is what it is. We just we really
(11:21):
focus on trying to appreciate the time that we have
together and the like something that's soothing for both of
us is shower time. Yeah, that's always been like a
time for us to be together and to relax and
we can decompress.
Speaker 2 (11:36):
I also think that there's something too, like the scheduling
aspect of it. I think you are getting to this
point like even that can build up in anticipation more
than just the maybe it'll happen, maybe it won't. So
I love that. I love that, and I love your relationship,
which is why I am so glad that we get
(11:57):
to bring your wife into this conversation. Before we meet
Tom's wife, Cheryl, I'm going to check in with doctor Rhin. Okay,
I want to bring you back into the conversation here,
doctor Ryan. Tom has brought up some really good ideas
(12:18):
around how we can reframe our definition of intimacy and
be more intentional with scheduling time for intimacy with our partner,
with the goal of creating a partnership that can accommodate
migraine attacks. But the current underneath all of this is
around the stigmas that are faced by people living with
(12:38):
chronic migraine and how they have to mask their experience
to fit in. So let's refresh people's memories a bit.
What are some of the most common stigmas you hear
about from your patients.
Speaker 4 (12:51):
Nora, The stigma that breaks my heart the most is
that people don't trust the migraine patient. They think that
they're faking it. They think that they're faking the intensity
of the illness or the impact that the disability has
on their everyday life. Worse than that, patients are often
made to feel like they're scapegoaded, that their illness is
there for personal gain or personal preference, as ridiculous as
(13:11):
that sounds. Their coworkers make them feel like they're using
chronic migraine diagnosis to avoid work or to work less.
Their partners sometimes make them feel like they're using their
diagnosis to avoid intimate encounters. Family members make them feel
like they're using their diagnosis to avoid family responsibilities or
even family interactions, which is the exact opposite of what
(13:32):
these patients really feel and want. What we end up
then with is an impact that isolates people living with
chronic migraine even further. It keeps them from developing open
and honest communication around what they're experiencing.
Speaker 2 (13:45):
Yeah, I would imagine that seeing and feeling these stigmas
every day would make you hesitant to be vulnerable and
to share your story with other people and even with
your doctor. Is this a factor in why you've seen
people has to seek care and what other reasons have
you seen that makes people hesitate a.
Speaker 4 (14:06):
Bit nor this blows in my mind. A couple of
years ago, study came out that found that nearly half
of people with migraine hesitate to seek care. It's a
huge number and sadly not surprising. In the study, they
also try to get a better picture of why those
people hesitated. What they found was that over a third
of those people said that they hesitated because they were
afraid their symptoms weren't going to be taken seriously. And
(14:29):
it's sad to see for me and my practice. I mean,
they're internalizing all of the questioning that they've received their
whole life about whether or not their disease is legitimate,
are they really having symptoms? Are the symptoms that bad?
And they're afraid that they're not going to have their
needs met again when they finally do get the chance
to see the physician. They're scared of the cynicism and disbelief.
(14:50):
They're scared of the stigma that they've experienced already. And
it's why I try so hard to save space for
them when they do share their story at the very
beginning of the relationship that we're building. Clinically, it's really
important for that treatment journey, but it's also really important
for them to have that level of trust.
Speaker 2 (15:06):
All right, thanks doctor Ryan. After the break, we'll get
back to the conversation and meet Tom's wife, Cheryl. It's
(15:39):
time to bring Cheryl into the chat.
Speaker 5 (15:42):
Hi, Nora, it's great to be here. Thanks for having me.
Speaker 2 (15:45):
Cheryl. It's so good to meet you, and I am
grateful that our audience gets to hear about this partnership
that you two have and that you have built and
that you have maintained, and that you've been able to
navigate this experience and stay close to each other through
all of this. A lot of a relationship comes down
(16:06):
to communication. How do you to communicate, check in with
each other, and stay connected.
Speaker 5 (16:13):
So, yes, the answer to your question, we just have
to feel it out. Because he'll pretend he doesn't have
a headache, or he'll take medicine and say, oh, I'm fine,
and I'll be like, are you sure, because you're acting
like I really don't want to be with you right now,
And of course I understand that being uncomfortable makes those
(16:34):
times difficult. And then I was chuckling to myself because
we went away for our anniversary last year and we
thought we'd be together, and first day we're there, I'm like, honey,
I'm getting an aura and I had a migrant attack
for two days and we're just like those times we
were just laying in bed together and I was listening
(16:54):
to a movie and he was watching the movie, and
so it was flip sides. We just worked through it.
So intimacy is more than a feeling. It's part of
a being who you are and that you're together.
Speaker 2 (17:07):
Yeah, that's really beautiful and I love that you just
you talked about the example of you're going away for
your anniversary. Everyone thinks the anniversary trip is going to
be the time that's the most relatable thing. We're going
away together, we're celebrating, you're getting a migrant attack, you're
listening to a movie. Now, Like, I don't think that
(17:29):
there's anything more relatable than that. Whether or not you
experience chronic migraine, like the expectations versus reality require, it
just requires a lot of flexibility. It requires like that
deeper intimacy that you're talking about, which is compassion for
each other and compassion for yourselves. I want to talk
about how you've navigated those not tonight moments, because I
(17:53):
think that's a hard thing. It's a hard thing for
somebody to say. At times, it's a hard thing for
somebody to hear as well.
Speaker 5 (18:01):
It's really funny because my chronic migraine, I had four
or five migraine attacks a week. Fortunately Tom didn't have migraine.
Then for me, it'd be like, I've taken care of
all the kids today, I've vomited like four times today.
I feel ugly, like I don't want to do anything.
(18:22):
And he, believe it or not, has it that is
in him all the time because he always wants me
to be happy as well.
Speaker 2 (18:29):
Yeah, so now it's the flip.
Speaker 5 (18:30):
Side, and women are a little different than men. Meant
to strive to be more intimate and women are like,
oh okay, I can sleep tonight. So for us, like
Tom said, we could sit on the couch and hold
hands and just snuggle and they'll be okay, and he'll
apologize to me, and I'm like, there's no need to apologize.
I loved just sitting there and watching the movie with you,
(18:53):
or having you lay there and snore. Either way, I
know that he's here, so I'm just grateful that I
have him snoring next to me, or with an ice
pack or whatever.
Speaker 2 (19:04):
So in world where media often presents one version of
intimacy above all others, this is a softer form of it.
It's one that respects the bodies don't always do what
we want them to do, and that love and connection
can take many forms. Tom, I want to ask you,
there's a lot culturally, there's a lot of pressure as
a man to not, oh, don't experience any vulnerability and
(19:28):
weakness in quotation marks. Certainly don't talk about it if
you are experiencing it, and it's very toxic. It's very
toxic to men, it's toxic to the people they love.
And there's so much strength to be found, like inner strength,
but also connection with other people in sharing those experiences openly.
(19:51):
Can you talk to us about that?
Speaker 1 (19:53):
Yeah, I just you just happen to get to the
point where I was able to do that because your
work with a group of people, you're talking with your
supervisor or something like that, and they're used to you
being very on top of things, very sharp. And one
of my bosses used to tell me it didn't hire
you for anything, but the space between your ears. He says,
I want that three inches between your ears. That's great,
(20:17):
but during a migraine attack, I'm not at my best
at that point in time. I just had to come
to the realization that I could try and quote man
up and try and cover it up and put on
the little happy face or whatever and say, oh no,
I'm fine, I've got this. I've got that. I'm also
(20:37):
the kind of person where if I'm going to do something,
I like to try and do it at the best
level that I can. And I just knew that wasn't happening.
I could just feel it in myself. See, yeah, I
see that this project is done, but I could have
done better. But I just don't know how I could
have done better. So it was like, I have to
(20:58):
start telling the people that work with me, telling the
people that are above me. I've been seeing a doctor
about this, and this is how it has to be
for me, and I'd like you guys to be on
board with it. So it's like it was very difficult.
I lived on fmla intermittent leave for three years at
(21:20):
the end of my career. It was a tough conversation
to have because I had to admit to myself that
you're not who you were. That person is no longer
viable in your life. So I had to kind of
recreate myself and repurpose myself into something else. And that's
(21:40):
when I found migrain dot Com and I submitted some
writing and they liked it and they brought me on
to do some content for them, and that really allowed
me to kind of repurpose myself. Now I can help
another set of people by sharing my experience and just
(22:01):
trying it to be open, honest, and, as I guess, vulnerable,
because it's one of those things that's if I'm suffering,
then other people are suffering. But what I've learned with
chronic migraine is that you can talk to ten different
people and they're going to have ten different angles on
how it impacts their life.
Speaker 2 (22:30):
Okay, doctor Ryan, how much do you love these two?
They are like the shining stars of the migraine classroom. Now.
I always love hearing your thoughts on how people living
with chronic migraine could approach doctors and their workplaces with
this conversation, but we have never really talked about how
they could approach their partners, their spouses, their boyfriends, their girlfriends.
(22:53):
Do you have any numbers that help illustrate how hesitant
people are to share their migraine experience and how do
you try to help them navigate these conversations with their partners?
Speaker 4 (23:04):
Nora, This is I think the piece that helps these
patients realize that they are not alone. So there are
and unfortunately, the first one is really concerning. There was
a large observational study that was done with almost twelve
thousand episodic and chronic migraine respondents, So a huge study
that basically showed that the closer you are in a
(23:25):
relationship to someone who experienced migraine attacks, the more stigmatizing
your attitude is toward them. So the closer that you are,
the worst that you're treating that individual that suffers with migraine.
Of the twelve thousand people with both episodic and chronic
migraine that were surveyed, seventy percent endorsed a stigma toward
individuals living with migraine. So these people were asked, who
(23:47):
had a relationship with someone who had either episodic or
chronic migraine, do you do stigmatizing things to that person?
And seventy percent of them said yes, and this was
more common in those responds who had even closer relationships
through a partnership or family relationship, a friendship to those
that were living with migraine clinically. The way that we
(24:08):
address this in my office, Nora, is that we put
it all out in the open, that they made an
awesome choice in coming to seek care, and we validate
their experience. Finally, and really importantly, after we have that
sort of bridge to trust and understanding, look toward exploring
treatment options with really specific goals in mine.
Speaker 2 (24:23):
All right, let's get back to Tom. Tom, you said something
earlier that I want to revisit, which is you had
to disassemble who you thought you were and what your
life was going to be like and rebuild that. I imagine
(24:43):
that had to be pretty hard emotionally. How did that
feel for you? And then, Cheryl, I want to hear
how that felt for you watching Tom go through that.
Speaker 1 (24:56):
For me, it was a very emotional thing for me
because I had always been the provider and I got
to the point where it's I just I couldn't do
that anymore, at least not to the level that I
thought that I could do, and it was a hard
transition to make, but my wife was there to support me,
(25:20):
and we knew where things were going to be going,
and we planned the best way that we could to
make a way for the future. I made concessions to
pull back out of my career and go on disability,
and she made plans to step back up into the
out of the home workforce. I have to be real
(25:42):
about it. I have to be honest and to set
myself aside. And I tried not to project the emotion
that I'm feeling on the people around me and people
in my family and things like that, but sometimes it's
just how it is.
Speaker 5 (25:58):
So as I'm sitting in listening to all of this
and I'm thinking and thinking of my answer, I can
recall when he first started getting his migrant attacks, he
missed out on a daddy daughter dance with his daughter,
and we have pictures of someone who stepped in for him,
and he felt really bad about it, but he just
(26:18):
couldn't bring himself to do it. And that was the
first time where I'm like, this has to be a
debilitating feeling, like he can't make himself go to a
daddy daughter dinner that's only two hours long, you know,
So that's when you're like, maybe there is something a
(26:39):
little more to this headache than it being just a headache.
It wasn't until about six years ago that I really
started to realize that he really was struggling trying to
keep his head on top of the cheese per se.
And Christmas was coming and we're pretty good financially with
our money and spending it wisely and everything. But I
(27:02):
went up to a local department store and I went in.
I'll never forget it. I went in for my interview
and I just broke down tears, and the lady was like,
and I'm like, look, I'm not asking you to hire
me because I'm crying, but I'm like, my husband has
chronic migraine, and I don't want you to hire me
(27:23):
because my husband has chronic migraine. I may call out
a couple of times because of that, but I'm like,
I'm just trying to get back into the workforce. And
they did hire me, which was amazing because I was
bawling like a baby. But it wasn't until then that
I realized that this is now who I am redefined
as like I'm the person that's going to have to
(27:45):
provide or whatever. So we're walking into a different era.
So that's one of the realizations that we have as well,
and he understands that, and so that's a lot on
my shoulders.
Speaker 2 (27:55):
Yeah, I think it's really beautiful for people to hear
that any relationship can change any Yeah, it's like you
change that changes the marriage, the marriage changes you, you
change each other, like it's all just constant evolution. I
think that's really valuable for people to hear. Tom. I
want to and by talking about the writing that you've done,
(28:16):
what does it feel like to hear from people who
have read your story and connected with it?
Speaker 1 (28:24):
It feels good and I'm very grateful that they acknowledge
that I've written something that resonates with them. It just
it gives me a good feeling. It reinforces the new
purpose that I have, that I can touch other people
that are not even in my area and stuff like that.
(28:47):
I think I've developed maybe the most meaningful connections with
some of the people that are across the world. I've
connected with someone from Germany and what I wrote impacted him,
and the comments that he wrote in response to what
I had written resonated with me, so we traded information.
Speaker 2 (29:09):
And yeah, yeah, you made him feel seen. He made
you feel seen, and that's so powerful and it's so
valuable and so generous of you to do, Tom, And
it's so generous of both of you to share so
much of yourselves and your relationship with us and with
our listeners. It is truly a gift. And I'm so
(29:30):
grateful to you both for being here. So thank you,
Thank you for having us.
Speaker 5 (29:34):
Thank you.
Speaker 2 (29:37):
Okay, doctor Ryan. Tom brought up something that's really important,
the idea that men feel this pressure to not open
up about their experience, that sharing all their symptoms or
being vulnerable could be seen as being weak, and that
it makes them hesitate. We've touched a bit on this before,
(29:59):
but what do the numbers show us?
Speaker 4 (30:02):
Yeah, I think, Nora, it's super important for us to
keep this out in front, because this really is one
of the first hurdles that patients are going to experience,
is that hesitancy. So the prevalence of people with migraine
is significantly higher in females than in males. Studies have
shown that the ratio of female to male people with
migraine is roughly three to one, meaning that for every
male migraine patient out there, there are three female migraine patients.
(30:23):
The Global Burden of Disease Study is a comprehensive research
effort that is consistently highlighted migraine as a leading cause
of disability worldwide, and that's where this data is coming from.
Migraine attacks affect more than one billion people worldwide, according
to the study, women even more so so. Men with
migraine generally have less severe migraine attacks, and unfortunately, what
(30:44):
that translates into is that they're less likely to seek treatment,
and if they do seek treatment, they're less likely to
receive a diagnosis versus women.
Speaker 2 (30:52):
So, with all that in mind, are their unique challenges
to men with chronic mind migraine finding care?
Speaker 4 (31:02):
Yeah, I look at the patients that I've treated in
the past. There are several challenges. Let's take the perception
and awareness. For example, men might not recognize their symptoms
as migraine attacks. They might underestimate the severity of their
symptoms and then ultimately dismiss what they're experiencing as you know,
quote unquote just a headache. To avoid that stigma and
ultimately avoid the conversation altogether, nor the bottom line is
(31:24):
that men are less likely to talk to a doctor
about their migraine attacks and about the symptoms that they're experiencing.
Speaker 2 (31:30):
Thank you, doctor Rian, that was truly one of the
most beautiful conversations that I've had. I am so grateful
for Tom for sharing everything, for Cheryl for joining in,
and for them laying out so much of their relationship,
their marriage, their personal and shared experiences for all of us.
(31:54):
No two marriages are alike, just like Tom noted that
no two migrain experiences are exactly alike. And I think
it's so valuable to hear that reinventing yourself when you
don't necessarily want to been reconfiguring your marriage, your relationship
(32:19):
with each other, your relationship with yourself. This is necessary
often and it can be beautiful. It can be beautiful
even if we didn't choose it. So I hope you
loved today's conversation. I know I did. Thanks for listening
to the head start embracing the journey. We hope you
(32:39):
found something worthwhile here with us today. A new coping strategy,
a relatable story, the comfort of knowing you're not alone.
I'm so happy to be a part of creating this
community for all of us, and especially for people living
with chronic migrain. If you haven't found a treatment plan
that is working for you, please do reach out to
(33:00):
your headache specialist to explore your options. I truly hope
this has helped you find a bit of comfort and
maybe a smile. Maybe see you next episode and stay
tuned for more important safety information. The head Start Embracing
the Journey is hosted by myself Norah McNerney, Executive produced
(33:21):
by Van Shechian. Our head of post production is James Foster,
our researcher is Sierra Kaiser, and our writer is John Irwin.
The show is mixed by Michael Hardman, original music by
Soundcat Productions and Art List.
Speaker 3 (33:41):
Important safety information continued. There has not been a confirmed
serious case of spread of talks and effect away from
the injection site. When botox has been used at the
recommended dose to treat chronic migraine. Botox may cause loss
of strength or general muscle weakness, vision problems, or dizziness
within hours to week of receiving botox. If this happens,
(34:02):
do not drive a car, operate machinery, or do other
dangerous activities. Do not receive botox. If you are allergic
to any of the ingredients in botox, see medication guide
for ingredients. Had an allergic reaction to any other botchu
linum toxin product, such as myoblock rhymo bochelinum toxin B
disport abobochelinum toxin A, zeomin inco, botcheltem toxin A, JEVO,
(34:26):
probochul item toxin A XVFS, daxify daxibochelnum toxin A l
A n M, or lettibo letty botcheltem toxin AWLBG. This
may not be a complete list of all botchelnum toxin
products have a skin infection at the planned injection site.
The dose of botox is not the same as or
comparable to another botchulnum toxin product. Serious and or immediate
(34:51):
allergic reactions have been reported, including itching, rash, red, itchy weltz, wheezing,
asthma symptoms, dizziness or feeling faint. Get medical help right
away if you experience symptoms, further injection of botox should
be discontinued. Tell your doctor about all your muscle or
nerve conditions, such as als or lou Gehrig's disease, Myasthenia
(35:12):
gravis or lambert Eton syndrome, as you may be at
increased risk of serious side effects, including difficulty swallowing and
difficulty breathing from typical doses of botox. Tell your doctor
about all your medical conditions, including if you have or
have had bleeding problems, have plans to have surgery, had
surgery on your face, have weakness of forehead muscles, trouble
(35:33):
raising your eyebrows, drooping eyelids, and any other abnormal facial change.
Are pregnant or plan to become pregnant. It is not
known if botox can harm your unborn baby, our breastfeeding
or plan to. It is not known if botox passes
into breast milk. Tell your doctor about all the medicines
you take, including prescription and over the counter medicines, vitamins,
and herbal supplements. Using botox with certain other medicines may
(35:56):
cause serious side effects. Do not start any new medicine
until you have told your doctor that you have received
botox in the past. Tell your doctor if you received
any other bochulinum toxin product in the last four months.
Have received injections of bochulinum toxin such as myoblock, disport, zamin, Jevo, Daxify,
or Letibo in the past. This may not be a
(36:18):
complete list of all bochulinum toxin products. Tell your doctor
exactly which product you received. Have recently received an antibiotic
by injection, Take muscle relaxance, take an allergy or cold medicine,
take a sleep medicine, Take aspirin like products, or blood thinner.
Other side effects of botox include dry mouth, discomfort or
pain at the injection site, tiredness, headache, neck pain, eye
(36:41):
problems such as double vision, blurred vision, decreased eye sight,
drooping eyelids, swelling of your eyelids and dry eyes, drooping eyebrows,
and upper respiratory tract infection. For more information, refer to
the medication guide or talk with your doctor. You are
encouraged to report negative side effects of prescription drugs to
the FDA. Visit www dot FDA dot gov, slash MedWatch,
(37:04):
or call one eight hundred FDA one zero eight eight.
Please see botox full product information, including boxed warning and
medication guide by clicking the link provided in the podcast description,
or by visiting www dot RXABV dot com slash pdf,
slash botox underscore PI dot pdf. If you are having
(37:26):
difficulty paying for your medicine, abvmy be able to help,
visit ABV dot com slash Patient Access Support to learn more.
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