WEBVTT - Intimacy and Chronic Migraine: A Conversation with Tom Picerno 0:00:03.400 --> 0:00:07.360 Ruby. 0:00:08.200 --> 0:00:10.720 Life sometimes has a way of blindsiding you with a 0:00:10.760 --> 0:00:15.480 feeling of being overwhelmed at the worst possible time. That's 0:00:15.520 --> 0:00:19.120 why you have your self care, your coping strategies, That's 0:00:19.120 --> 0:00:22.680 why you have us. I'm Norah Mcinernie and this is 0:00:22.720 --> 0:00:26.279 the head start Embracing the Journey, a podcast where we'll 0:00:26.320 --> 0:00:29.080 be taking all those things you usually say for your 0:00:29.080 --> 0:00:32.120 friend group out into the open so we can all 0:00:32.200 --> 0:00:36.600 find a bit of optimism for those battling chronic migraine. 0:00:36.640 --> 0:00:40.680 These conversations are going to be even more helpful and relatable, 0:00:40.760 --> 0:00:45.080 so definitely stick around. This show is brought to you 0:00:45.120 --> 0:00:48.879 in partnership with ABVI, So first let's hear some important 0:00:48.920 --> 0:00:51.440 safety information and stay tuned to the end of the 0:00:51.520 --> 0:00:53.040 podcast for more. 0:01:00.120 --> 0:01:04.680 Indication. Botox on abochulinum toxin A is a prescription medicine 0:01:04.720 --> 0:01:07.400 that is injected into muscles and used to prevent headaches 0:01:07.440 --> 0:01:09.959 and adults with chronic migraine who have fifteen or more 0:01:10.040 --> 0:01:13.120 days each month with headache lasting four or more hours 0:01:13.160 --> 0:01:15.959 each day in people eighteen years in older. It is 0:01:16.040 --> 0:01:18.880 not known whether botox is safe and effective to prevent 0:01:18.920 --> 0:01:21.919 headaches in patients with migraine. Who have fourteen or fewer 0:01:21.959 --> 0:01:26.800 headache days each month or episodic migraine. Important safety information. 0:01:27.120 --> 0:01:30.480 Botox may cause serious side effects that can be life threatening. 0:01:30.680 --> 0:01:32.760 Get medical help right away. If you have any of 0:01:32.800 --> 0:01:36.720 these problems any time hours to weeks after injection of botox. 0:01:36.880 --> 0:01:40.920 Problems swallowing, speaking, or breathing due to weakening of associated 0:01:41.000 --> 0:01:43.840 muscles can be severe and result in loss of life. 0:01:43.920 --> 0:01:46.200 You are at the highest risk if these problems are 0:01:46.200 --> 0:01:50.640 pre existing before injection. Swallowing problems may last for several months. 0:01:50.920 --> 0:01:54.320 Spread of toxin effects. The effect of botulinum toxin may 0:01:54.360 --> 0:01:57.920 affect areas away from the injection site and cause serious symptoms, 0:01:58.000 --> 0:02:01.639 including loss of strength and all over muscle weakness, double vision, 0:02:01.800 --> 0:02:05.760 blurred vision, drooping eyelets, coarseness or change or loss of voice, 0:02:05.800 --> 0:02:09.160 trouble saying words clearly, loss of bladder control, trouble breathing, 0:02:09.320 --> 0:02:13.200 and trouble swallowing. Please stay tuned for additional important safety 0:02:13.200 --> 0:02:17.880 information within this podcast. Today's guests. Tom Piserno is an 0:02:17.919 --> 0:02:20.800 actual botox patient who was on prescribed therapy when he 0:02:20.800 --> 0:02:23.760 shared his story. Changes in therapy status may have occurred 0:02:23.760 --> 0:02:27.040 since that time. Cheryl is not a botox patient Tom 0:02:27.040 --> 0:02:44.799 and Cheryl were not compensated by ABVI for sharing their story. 0:02:45.520 --> 0:02:48.000 I don't know if anyone has ever told you this before, 0:02:48.040 --> 0:02:52.240 but relationships can be hard work. It is, of course, 0:02:52.400 --> 0:02:57.120 the work that is worth doing, showing up, communicating, learning 0:02:57.240 --> 0:03:00.920 and relearning your own needs and another person's needs, and 0:03:01.000 --> 0:03:05.280 then doing it all over again. This is the work 0:03:05.360 --> 0:03:10.240 of intimacy, of letting yourself be seen and known, and 0:03:10.320 --> 0:03:14.000 taking the time and effort to see and know another person. 0:03:15.040 --> 0:03:18.680 It is rewarding, and it is exhausting, even more so 0:03:18.880 --> 0:03:22.560 when you add chronic migraine into the equation, because it 0:03:22.600 --> 0:03:25.320 can be hard to tend to another person when you 0:03:25.400 --> 0:03:27.720 are in the middle of a migraine attack, and it 0:03:27.760 --> 0:03:30.959 can be hard to let someone tend to you when 0:03:31.000 --> 0:03:33.240 you just want to be left alone in a dark room. 0:03:33.960 --> 0:03:38.080 How can you experience intimacy when one or both partners 0:03:38.200 --> 0:03:41.200 are living with chronic illness? How do we meet the 0:03:41.240 --> 0:03:43.080 needs of the one we love when we can barely 0:03:43.120 --> 0:03:46.160 take care of our own. It can be hard to 0:03:46.200 --> 0:03:49.680 talk about this publicly, which means it's important to talk 0:03:49.720 --> 0:03:53.160 about it publicly. And that's why I'm so grateful for 0:03:53.280 --> 0:03:57.920 today's guest Tom Paserno. Tom is living with chronic migraine 0:03:57.960 --> 0:04:01.320 and his wife Cheryl experience it's hiss migraine attacks and 0:04:01.400 --> 0:04:04.480 in the decades they've been together they met when they 0:04:04.520 --> 0:04:09.600 were fourteen, they have learned to communicate, to adapt, and 0:04:09.640 --> 0:04:15.040 to redefine intimacy within their own boundaries and limitations. And 0:04:15.240 --> 0:04:18.200 in an act of true generosity, Tom has shared this 0:04:18.320 --> 0:04:22.360 hard won knowledge with the migraine community, sharing his story 0:04:22.440 --> 0:04:27.760 and moderating conversations on migrain dot com. Before we meet Tom, 0:04:27.880 --> 0:04:33.800 a quick check in with doctor Rhyn, Doctor Ryan. It's 0:04:33.839 --> 0:04:34.720 so good to see you. 0:04:34.640 --> 0:04:38.159 Again, Hey Nora. So cool to be back with you again. 0:04:38.720 --> 0:04:43.279 So we have some very nuanced and dare I say, 0:04:43.320 --> 0:04:47.799 personal conversations to have today. We have explored many different 0:04:47.839 --> 0:04:51.120 parts of the experience of living with chronic migraine, but 0:04:51.839 --> 0:04:57.400 we have never explored how it can affect intimacy. How 0:04:57.400 --> 0:04:59.920 often does this part of life and a patient's expe 0:05:00.000 --> 0:05:02.200 experience come up in your office? 0:05:02.440 --> 0:05:04.920 Yeah, this issue is brought up by nearly every adult 0:05:04.960 --> 0:05:08.160 patient in conversation around their migraine attacks and their migraine triggers. 0:05:08.760 --> 0:05:10.800 The concerns often brought up while discussing the impact of 0:05:10.839 --> 0:05:13.560 the symptoms and the way that that could impact their intimacy, 0:05:13.920 --> 0:05:15.320 and so I'm really glad that we get a chance 0:05:15.320 --> 0:05:16.880 to explore that with this episode. 0:05:16.960 --> 0:05:28.719 Me too. Okay, let's meet today's guest, Tom Paserno. Hi, Tom, 0:05:28.960 --> 0:05:29.440 Hey Nora. 0:05:29.520 --> 0:05:30.400 It's great to be here. 0:05:30.560 --> 0:05:32.680 I'm so glad you're able to join us and we 0:05:32.760 --> 0:05:36.240 can get to hear more of your story. But before 0:05:36.279 --> 0:05:39.080 we get into that, I want to ask you about 0:05:39.640 --> 0:05:43.560 music because I saw that you sometimes use music to 0:05:43.680 --> 0:05:47.159 help you cope with a migraine attack, which is actually 0:05:47.160 --> 0:05:49.359 really interesting to me because most of the people that 0:05:49.400 --> 0:05:53.000 we've spoken to have said that they actually prefer silence 0:05:53.120 --> 0:05:55.279 when they have a migraine attack. So I have to 0:05:55.360 --> 0:05:58.960 know what kind of music helps you during a migraine 0:05:58.960 --> 0:06:01.720 attack and is a different and from the music you 0:06:01.839 --> 0:06:04.440 might enjoy at other times. 0:06:04.880 --> 0:06:07.920 I use the music that I normally listen to just 0:06:08.440 --> 0:06:12.520 every day, so sometimes I could use anything from classical 0:06:12.640 --> 0:06:17.360 music to more hard rocking type music. 0:06:17.920 --> 0:06:18.440 Hard rock. 0:06:19.279 --> 0:06:22.719 Yeah, I have a few favorite tunes that are on 0:06:22.760 --> 0:06:24.400 my migraine playlist. 0:06:23.960 --> 0:06:27.799 So yeah, yeah, that makes sense to me. So Tom, 0:06:27.880 --> 0:06:30.040 I want you to set the scene for us a 0:06:30.040 --> 0:06:33.120 little bit. Can you give our listeners an example of 0:06:33.160 --> 0:06:35.599 what a migraine attack feels like for you. 0:06:36.440 --> 0:06:42.599 For me, I have chronic migraine. So usually when I'm 0:06:42.600 --> 0:06:45.760 getting a migraine attack, one of the key indicators for 0:06:45.920 --> 0:06:50.400 me is my aura. I usually start to see my 0:06:50.520 --> 0:06:54.120 field division like an accrescent and it starts to blur, 0:06:54.680 --> 0:06:57.560 and that blur moves across my field division. So that's 0:06:57.600 --> 0:07:00.440 when I know that I'm truly having a migraine attack. 0:07:00.680 --> 0:07:03.320 So I know that if I'm feeling discomfort at the 0:07:03.320 --> 0:07:05.760 same time as the aura, then I know that I'm 0:07:05.800 --> 0:07:07.760 in for a rough ride. And if I'm driving in 0:07:07.800 --> 0:07:10.640 a car, I immediately know I need to pull over 0:07:10.760 --> 0:07:12.920 and I just have to wait it out and see 0:07:12.920 --> 0:07:15.480 what happens. That's how it all starts for me, for 0:07:15.520 --> 0:07:16.160 the most part. 0:07:16.800 --> 0:07:20.480 Do you have a particular moment or a particular time 0:07:20.760 --> 0:07:24.120 when you felt that coming, Like you can feel the 0:07:24.160 --> 0:07:29.040 migraine attack coming and you have to make an adjustment 0:07:29.160 --> 0:07:31.640 to what your life is going to look like that day. 0:07:31.920 --> 0:07:36.040 Definitely, while I was still working, I had to educate 0:07:36.080 --> 0:07:39.200 my team on what migrain was like for me so 0:07:39.240 --> 0:07:44.760 that they can understand when they notice that I'm not 0:07:45.120 --> 0:07:48.400 feeling like I'm not mentally engaged in what we're talking about, 0:07:48.560 --> 0:07:50.360 so I have to bring them all up to speed. 0:07:51.320 --> 0:07:54.520 But if I'm on my way to the workplace or 0:07:54.560 --> 0:07:58.160 something like that, one of my first things after pulling 0:07:58.160 --> 0:08:00.160 off the road if I'm driving, is I need to 0:08:00.200 --> 0:08:03.680 notify someone where I'm going, to let them know I 0:08:03.800 --> 0:08:06.800 was on my way. This is what's happening. If it 0:08:06.800 --> 0:08:09.960 gets worse, I will not be there. If it improves 0:08:10.000 --> 0:08:12.360 to the point that I can function, I will be there. 0:08:13.440 --> 0:08:15.560 So there's a lot of education just to make my 0:08:15.640 --> 0:08:16.320 life easier. 0:08:16.600 --> 0:08:20.360 And also, I think that kind of communication makes everybody's 0:08:21.120 --> 0:08:23.480 life better, even the people who are around you and 0:08:23.520 --> 0:08:27.200 not experiencing a migrain attack. I do think most people 0:08:27.280 --> 0:08:30.320 want to be as good as possible for the people 0:08:30.360 --> 0:08:33.040 around us. Right, Your colleagues want to know how you're 0:08:33.040 --> 0:08:36.240 feeling so they can jump into action pick up slack 0:08:36.360 --> 0:08:38.960 if you can't, because you would do the same for them. 0:08:39.280 --> 0:08:39.480 Right. 0:08:39.640 --> 0:08:44.200 Absolutely, I'm really appreciative of the work that you have 0:08:44.320 --> 0:08:48.240 done being so open, and you're writing about your experience 0:08:48.280 --> 0:08:53.199 living with chronic migrain and especially how that affects your 0:08:53.200 --> 0:08:57.880 relationship with your wife, who also experiences migrain attacks, because 0:08:58.520 --> 0:09:01.240 that is not easy to talk about. We don't really 0:09:01.320 --> 0:09:07.920 talk about intimacy very much. You wrote that you have 0:09:08.880 --> 0:09:13.640 started to reframe what intimacy means, knowing that it is 0:09:13.679 --> 0:09:18.520 something that has to be flexible to your reality. Will 0:09:18.520 --> 0:09:20.640 you tell us about that? What does it mean to 0:09:20.720 --> 0:09:21.800 be intimate? 0:09:23.360 --> 0:09:27.800 For me? The little things? Now, if we get a 0:09:27.880 --> 0:09:32.320 chance to sit together on the couch and watch a movie, 0:09:32.600 --> 0:09:35.040 will hold hands just so that we have some kind 0:09:35.120 --> 0:09:39.960 of physical connection when we sleep at night, Quite often 0:09:40.640 --> 0:09:45.280 we'll just hold hands when we're lying in bed. It's 0:09:45.320 --> 0:09:46.760 just like the things that a lot of people take 0:09:46.760 --> 0:09:50.840 for granted. Those are the things that get reframed as 0:09:51.240 --> 0:09:54.560 our intimate times. We don't do the whole dating thing 0:09:54.720 --> 0:09:57.120 like other couples do a lot of times. So we 0:09:57.200 --> 0:09:59.160 need to go to the store and get paper, towels 0:09:59.160 --> 0:10:02.280 and toilet paper. Okay, that's a date. We're going to 0:10:02.360 --> 0:10:05.040 go and maybe we'll get an ice cream or something, 0:10:05.240 --> 0:10:07.880 either going or coming back, and that's it right there. 0:10:08.480 --> 0:10:08.880 Yeah. 0:10:09.160 --> 0:10:12.840 I really love that. I fully agree. There's also, of course, 0:10:12.880 --> 0:10:18.200 like the traditional definition of physical intimacy, which is for 0:10:18.640 --> 0:10:20.480 a lot of people saying that is like a very 0:10:20.520 --> 0:10:25.240 physical need or a desire. Is there anything that you 0:10:25.520 --> 0:10:29.320 have found that has worked in your marriage for how 0:10:29.360 --> 0:10:33.880 you both approach that part of your relationship knowing that 0:10:34.400 --> 0:10:37.960 chronic migraine can affect that at any moment. 0:10:38.880 --> 0:10:41.160 Yeah, don't want to sound cold about things, but we 0:10:41.240 --> 0:10:44.000 kind of plan things out. Yeah, we know we're going 0:10:44.080 --> 0:10:47.040 to go away for this weekend and we're going to 0:10:47.679 --> 0:10:50.000 just do something that we both enjoy, go look at 0:10:50.000 --> 0:10:51.880 antiques or something like that. But we know that we're 0:10:51.880 --> 0:10:55.880 going to be by ourselves, so that opportunity to have 0:10:55.920 --> 0:11:00.360 that physical intimacy is definitely going to be there. Whether 0:11:00.559 --> 0:11:03.440 you know, my head, my body and her head and 0:11:03.440 --> 0:11:08.040 her body will all sync up at that time. Maybe 0:11:08.240 --> 0:11:11.439 it happens, and maybe it doesn't, and it's like we're 0:11:11.480 --> 0:11:13.920 past the point where it's I don't really get upset 0:11:13.960 --> 0:11:17.360 about it anymore. Yeah, she doesn't get upset about it anymore. 0:11:17.440 --> 0:11:21.120 It just is what it is. We just we really 0:11:21.160 --> 0:11:23.600 focus on trying to appreciate the time that we have 0:11:23.720 --> 0:11:27.600 together and the like something that's soothing for both of 0:11:27.679 --> 0:11:31.920 us is shower time. Yeah, that's always been like a 0:11:32.000 --> 0:11:34.680 time for us to be together and to relax and 0:11:34.720 --> 0:11:35.840 we can decompress. 0:11:36.240 --> 0:11:40.640 I also think that there's something too, like the scheduling 0:11:40.720 --> 0:11:42.839 aspect of it. I think you are getting to this 0:11:42.960 --> 0:11:47.000 point like even that can build up in anticipation more 0:11:47.040 --> 0:11:49.400 than just the maybe it'll happen, maybe it won't. So 0:11:50.160 --> 0:11:52.839 I love that. I love that, and I love your relationship, 0:11:52.880 --> 0:11:57.920 which is why I am so glad that we get 0:11:57.960 --> 0:12:02.680 to bring your wife into this conversation. Before we meet 0:12:02.760 --> 0:12:12.320 Tom's wife, Cheryl, I'm going to check in with doctor Rhin. Okay, 0:12:12.360 --> 0:12:14.480 I want to bring you back into the conversation here, 0:12:14.520 --> 0:12:18.480 doctor Ryan. Tom has brought up some really good ideas 0:12:18.520 --> 0:12:22.319 around how we can reframe our definition of intimacy and 0:12:22.760 --> 0:12:27.000 be more intentional with scheduling time for intimacy with our partner, 0:12:27.600 --> 0:12:30.479 with the goal of creating a partnership that can accommodate 0:12:31.080 --> 0:12:35.360 migraine attacks. But the current underneath all of this is 0:12:35.960 --> 0:12:38.640 around the stigmas that are faced by people living with 0:12:38.720 --> 0:12:42.839 chronic migraine and how they have to mask their experience 0:12:42.920 --> 0:12:46.000 to fit in. So let's refresh people's memories a bit. 0:12:46.320 --> 0:12:49.280 What are some of the most common stigmas you hear 0:12:49.320 --> 0:12:51.120 about from your patients. 0:12:51.120 --> 0:12:53.439 Nora, The stigma that breaks my heart the most is 0:12:53.480 --> 0:12:56.960 that people don't trust the migraine patient. They think that 0:12:57.040 --> 0:12:59.640 they're faking it. They think that they're faking the intensity 0:12:59.679 --> 0:13:02.480 of the illness or the impact that the disability has 0:13:02.559 --> 0:13:05.240 on their everyday life. Worse than that, patients are often 0:13:05.240 --> 0:13:08.199 made to feel like they're scapegoaded, that their illness is 0:13:08.240 --> 0:13:11.960 there for personal gain or personal preference, as ridiculous as 0:13:11.960 --> 0:13:15.200 that sounds. Their coworkers make them feel like they're using 0:13:15.240 --> 0:13:18.839 chronic migraine diagnosis to avoid work or to work less. 0:13:19.120 --> 0:13:21.880 Their partners sometimes make them feel like they're using their 0:13:21.920 --> 0:13:25.760 diagnosis to avoid intimate encounters. Family members make them feel 0:13:25.840 --> 0:13:29.360 like they're using their diagnosis to avoid family responsibilities or 0:13:29.360 --> 0:13:32.560 even family interactions, which is the exact opposite of what 0:13:32.640 --> 0:13:35.480 these patients really feel and want. What we end up 0:13:35.480 --> 0:13:37.960 then with is an impact that isolates people living with 0:13:38.040 --> 0:13:41.720 chronic migraine even further. It keeps them from developing open 0:13:41.760 --> 0:13:44.559 and honest communication around what they're experiencing. 0:13:45.120 --> 0:13:49.439 Yeah, I would imagine that seeing and feeling these stigmas 0:13:49.480 --> 0:13:53.320 every day would make you hesitant to be vulnerable and 0:13:53.400 --> 0:13:56.200 to share your story with other people and even with 0:13:56.320 --> 0:13:59.440 your doctor. Is this a factor in why you've seen 0:13:59.480 --> 0:14:04.080 people has to seek care and what other reasons have 0:14:04.160 --> 0:14:06.680 you seen that makes people hesitate a. 0:14:06.559 --> 0:14:08.559 Bit nor this blows in my mind. A couple of 0:14:08.600 --> 0:14:11.040 years ago, study came out that found that nearly half 0:14:11.080 --> 0:14:14.160 of people with migraine hesitate to seek care. It's a 0:14:14.200 --> 0:14:17.600 huge number and sadly not surprising. In the study, they 0:14:17.679 --> 0:14:20.000 also try to get a better picture of why those 0:14:20.040 --> 0:14:22.680 people hesitated. What they found was that over a third 0:14:22.720 --> 0:14:25.360 of those people said that they hesitated because they were 0:14:25.400 --> 0:14:28.920 afraid their symptoms weren't going to be taken seriously. And 0:14:29.640 --> 0:14:32.320 it's sad to see for me and my practice. I mean, 0:14:32.480 --> 0:14:35.080 they're internalizing all of the questioning that they've received their 0:14:35.080 --> 0:14:37.480 whole life about whether or not their disease is legitimate, 0:14:37.840 --> 0:14:40.680 are they really having symptoms? Are the symptoms that bad? 0:14:41.440 --> 0:14:43.800 And they're afraid that they're not going to have their 0:14:43.840 --> 0:14:46.240 needs met again when they finally do get the chance 0:14:46.280 --> 0:14:50.520 to see the physician. They're scared of the cynicism and disbelief. 0:14:50.520 --> 0:14:53.480 They're scared of the stigma that they've experienced already. And 0:14:53.520 --> 0:14:55.400 it's why I try so hard to save space for 0:14:55.480 --> 0:14:57.920 them when they do share their story at the very 0:14:58.000 --> 0:15:01.440 beginning of the relationship that we're building. Clinically, it's really 0:15:01.480 --> 0:15:04.160 important for that treatment journey, but it's also really important 0:15:04.160 --> 0:15:05.720 for them to have that level of trust. 0:15:06.960 --> 0:15:09.480 All right, thanks doctor Ryan. After the break, we'll get 0:15:09.480 --> 0:15:39.760 back to the conversation and meet Tom's wife, Cheryl. It's 0:15:39.800 --> 0:15:41.720 time to bring Cheryl into the chat. 0:15:42.120 --> 0:15:44.880 Hi, Nora, it's great to be here. Thanks for having me. 0:15:45.400 --> 0:15:49.200 Cheryl. It's so good to meet you, and I am 0:15:49.280 --> 0:15:52.360 grateful that our audience gets to hear about this partnership 0:15:52.880 --> 0:15:54.760 that you two have and that you have built and 0:15:54.760 --> 0:15:57.560 that you have maintained, and that you've been able to 0:15:58.360 --> 0:16:02.720 navigate this experience and stay close to each other through 0:16:02.840 --> 0:16:06.880 all of this. A lot of a relationship comes down 0:16:06.880 --> 0:16:11.240 to communication. How do you to communicate, check in with 0:16:11.280 --> 0:16:13.359 each other, and stay connected. 0:16:13.920 --> 0:16:17.160 So, yes, the answer to your question, we just have 0:16:17.200 --> 0:16:20.000 to feel it out. Because he'll pretend he doesn't have 0:16:20.040 --> 0:16:22.720 a headache, or he'll take medicine and say, oh, I'm fine, 0:16:23.320 --> 0:16:26.200 and I'll be like, are you sure, because you're acting 0:16:26.840 --> 0:16:29.840 like I really don't want to be with you right now, 0:16:29.880 --> 0:16:34.120 And of course I understand that being uncomfortable makes those 0:16:34.160 --> 0:16:37.160 times difficult. And then I was chuckling to myself because 0:16:37.200 --> 0:16:41.400 we went away for our anniversary last year and we 0:16:42.000 --> 0:16:46.520 thought we'd be together, and first day we're there, I'm like, honey, 0:16:46.520 --> 0:16:49.040 I'm getting an aura and I had a migrant attack 0:16:49.200 --> 0:16:51.720 for two days and we're just like those times we 0:16:51.720 --> 0:16:54.200 were just laying in bed together and I was listening 0:16:54.240 --> 0:16:56.400 to a movie and he was watching the movie, and 0:16:56.480 --> 0:16:59.120 so it was flip sides. We just worked through it. 0:16:59.200 --> 0:17:04.320 So intimacy is more than a feeling. It's part of 0:17:04.359 --> 0:17:07.159 a being who you are and that you're together. 0:17:07.600 --> 0:17:10.920 Yeah, that's really beautiful and I love that you just 0:17:11.480 --> 0:17:13.440 you talked about the example of you're going away for 0:17:13.480 --> 0:17:17.240 your anniversary. Everyone thinks the anniversary trip is going to 0:17:17.280 --> 0:17:20.399 be the time that's the most relatable thing. We're going 0:17:20.440 --> 0:17:25.720 away together, we're celebrating, you're getting a migrant attack, you're 0:17:25.800 --> 0:17:29.359 listening to a movie. Now, Like, I don't think that 0:17:29.560 --> 0:17:32.159 there's anything more relatable than that. Whether or not you 0:17:32.280 --> 0:17:37.479 experience chronic migraine, like the expectations versus reality require, it 0:17:37.560 --> 0:17:39.800 just requires a lot of flexibility. It requires like that 0:17:39.880 --> 0:17:43.159 deeper intimacy that you're talking about, which is compassion for 0:17:43.200 --> 0:17:46.840 each other and compassion for yourselves. I want to talk 0:17:46.880 --> 0:17:53.520 about how you've navigated those not tonight moments, because I 0:17:53.520 --> 0:17:55.399 think that's a hard thing. It's a hard thing for 0:17:55.440 --> 0:17:58.199 somebody to say. At times, it's a hard thing for 0:17:58.240 --> 0:18:00.480 somebody to hear as well. 0:18:01.400 --> 0:18:04.959 It's really funny because my chronic migraine, I had four 0:18:05.080 --> 0:18:09.520 or five migraine attacks a week. Fortunately Tom didn't have migraine. 0:18:09.520 --> 0:18:13.920 Then for me, it'd be like, I've taken care of 0:18:14.000 --> 0:18:17.040 all the kids today, I've vomited like four times today. 0:18:17.400 --> 0:18:21.080 I feel ugly, like I don't want to do anything. 0:18:22.000 --> 0:18:24.800 And he, believe it or not, has it that is 0:18:24.840 --> 0:18:27.000 in him all the time because he always wants me 0:18:27.160 --> 0:18:28.640 to be happy as well. 0:18:29.040 --> 0:18:30.919 Yeah, so now it's the flip. 0:18:30.680 --> 0:18:33.320 Side, and women are a little different than men. Meant 0:18:33.359 --> 0:18:36.399 to strive to be more intimate and women are like, 0:18:36.480 --> 0:18:39.639 oh okay, I can sleep tonight. So for us, like 0:18:39.680 --> 0:18:42.240 Tom said, we could sit on the couch and hold 0:18:42.320 --> 0:18:45.960 hands and just snuggle and they'll be okay, and he'll 0:18:45.960 --> 0:18:49.520 apologize to me, and I'm like, there's no need to apologize. 0:18:49.560 --> 0:18:52.639 I loved just sitting there and watching the movie with you, 0:18:53.240 --> 0:18:56.520 or having you lay there and snore. Either way, I 0:18:56.560 --> 0:19:00.679 know that he's here, so I'm just grateful that I 0:19:00.760 --> 0:19:03.000 have him snoring next to me, or with an ice 0:19:03.040 --> 0:19:03.920 pack or whatever. 0:19:04.600 --> 0:19:08.000 So in world where media often presents one version of 0:19:08.000 --> 0:19:12.240 intimacy above all others, this is a softer form of it. 0:19:12.240 --> 0:19:14.639 It's one that respects the bodies don't always do what 0:19:14.680 --> 0:19:17.200 we want them to do, and that love and connection 0:19:17.440 --> 0:19:20.320 can take many forms. Tom, I want to ask you, 0:19:20.359 --> 0:19:23.720 there's a lot culturally, there's a lot of pressure as 0:19:23.720 --> 0:19:28.040 a man to not, oh, don't experience any vulnerability and 0:19:28.160 --> 0:19:32.760 weakness in quotation marks. Certainly don't talk about it if 0:19:33.280 --> 0:19:38.080 you are experiencing it, and it's very toxic. It's very 0:19:38.119 --> 0:19:40.880 toxic to men, it's toxic to the people they love. 0:19:40.920 --> 0:19:45.920 And there's so much strength to be found, like inner strength, 0:19:45.960 --> 0:19:51.000 but also connection with other people in sharing those experiences openly. 0:19:51.080 --> 0:19:52.880 Can you talk to us about that? 0:19:53.760 --> 0:19:56.080 Yeah, I just you just happen to get to the 0:19:56.119 --> 0:19:59.720 point where I was able to do that because your 0:19:59.760 --> 0:20:02.359 work with a group of people, you're talking with your 0:20:02.359 --> 0:20:04.960 supervisor or something like that, and they're used to you 0:20:05.040 --> 0:20:07.920 being very on top of things, very sharp. And one 0:20:07.920 --> 0:20:10.040 of my bosses used to tell me it didn't hire 0:20:10.119 --> 0:20:13.560 you for anything, but the space between your ears. He says, 0:20:13.600 --> 0:20:16.919 I want that three inches between your ears. That's great, 0:20:17.440 --> 0:20:20.720 but during a migraine attack, I'm not at my best 0:20:20.920 --> 0:20:23.800 at that point in time. I just had to come 0:20:23.840 --> 0:20:28.480 to the realization that I could try and quote man 0:20:28.560 --> 0:20:32.119 up and try and cover it up and put on 0:20:32.200 --> 0:20:34.480 the little happy face or whatever and say, oh no, 0:20:34.640 --> 0:20:37.560 I'm fine, I've got this. I've got that. I'm also 0:20:37.600 --> 0:20:40.080 the kind of person where if I'm going to do something, 0:20:40.160 --> 0:20:42.400 I like to try and do it at the best 0:20:42.480 --> 0:20:47.280 level that I can. And I just knew that wasn't happening. 0:20:47.320 --> 0:20:49.679 I could just feel it in myself. See, yeah, I 0:20:49.720 --> 0:20:53.439 see that this project is done, but I could have 0:20:53.480 --> 0:20:55.600 done better. But I just don't know how I could 0:20:55.640 --> 0:20:58.720 have done better. So it was like, I have to 0:20:58.760 --> 0:21:02.560 start telling the people that work with me, telling the 0:21:02.600 --> 0:21:05.280 people that are above me. I've been seeing a doctor 0:21:05.320 --> 0:21:08.320 about this, and this is how it has to be 0:21:08.359 --> 0:21:11.199 for me, and I'd like you guys to be on 0:21:11.280 --> 0:21:15.360 board with it. So it's like it was very difficult. 0:21:15.400 --> 0:21:20.359 I lived on fmla intermittent leave for three years at 0:21:20.359 --> 0:21:22.919 the end of my career. It was a tough conversation 0:21:23.040 --> 0:21:26.120 to have because I had to admit to myself that 0:21:26.720 --> 0:21:30.400 you're not who you were. That person is no longer 0:21:31.000 --> 0:21:35.639 viable in your life. So I had to kind of 0:21:35.640 --> 0:21:40.720 recreate myself and repurpose myself into something else. And that's 0:21:40.760 --> 0:21:45.720 when I found migrain dot Com and I submitted some 0:21:45.800 --> 0:21:48.560 writing and they liked it and they brought me on 0:21:48.680 --> 0:21:53.920 to do some content for them, and that really allowed 0:21:53.920 --> 0:21:57.240 me to kind of repurpose myself. Now I can help 0:21:57.320 --> 0:22:01.439 another set of people by sharing my experience and just 0:22:01.480 --> 0:22:05.200 trying it to be open, honest, and, as I guess, vulnerable, 0:22:05.880 --> 0:22:10.520 because it's one of those things that's if I'm suffering, 0:22:10.600 --> 0:22:13.159 then other people are suffering. But what I've learned with 0:22:13.240 --> 0:22:16.800 chronic migraine is that you can talk to ten different 0:22:16.800 --> 0:22:20.119 people and they're going to have ten different angles on 0:22:20.600 --> 0:22:27.120 how it impacts their life. 0:22:30.560 --> 0:22:33.640 Okay, doctor Ryan, how much do you love these two? 0:22:33.680 --> 0:22:38.320 They are like the shining stars of the migraine classroom. Now. 0:22:38.400 --> 0:22:41.080 I always love hearing your thoughts on how people living 0:22:41.080 --> 0:22:44.800 with chronic migraine could approach doctors and their workplaces with 0:22:44.880 --> 0:22:48.240 this conversation, but we have never really talked about how 0:22:48.240 --> 0:22:52.679 they could approach their partners, their spouses, their boyfriends, their girlfriends. 0:22:53.400 --> 0:22:56.520 Do you have any numbers that help illustrate how hesitant 0:22:56.560 --> 0:22:59.920 people are to share their migraine experience and how do 0:22:59.920 --> 0:23:03.760 you try to help them navigate these conversations with their partners? 0:23:04.680 --> 0:23:07.320 Nora, This is I think the piece that helps these 0:23:07.359 --> 0:23:11.119 patients realize that they are not alone. So there are 0:23:11.160 --> 0:23:14.520 and unfortunately, the first one is really concerning. There was 0:23:14.560 --> 0:23:17.719 a large observational study that was done with almost twelve 0:23:17.760 --> 0:23:21.560 thousand episodic and chronic migraine respondents, So a huge study 0:23:21.920 --> 0:23:25.399 that basically showed that the closer you are in a 0:23:25.480 --> 0:23:29.280 relationship to someone who experienced migraine attacks, the more stigmatizing 0:23:29.280 --> 0:23:33.160 your attitude is toward them. So the closer that you are, 0:23:33.880 --> 0:23:37.320 the worst that you're treating that individual that suffers with migraine. 0:23:37.400 --> 0:23:39.800 Of the twelve thousand people with both episodic and chronic 0:23:39.840 --> 0:23:43.560 migraine that were surveyed, seventy percent endorsed a stigma toward 0:23:43.640 --> 0:23:47.760 individuals living with migraine. So these people were asked, who 0:23:47.800 --> 0:23:50.720 had a relationship with someone who had either episodic or 0:23:50.800 --> 0:23:54.679 chronic migraine, do you do stigmatizing things to that person? 0:23:55.160 --> 0:23:58.560 And seventy percent of them said yes, and this was 0:23:58.640 --> 0:24:02.200