The migraine diaries, with Sally Herships

[00:00:00] I think that the headaches may have started in my 20s. I'm guessing my late 20s. We're going to talk about migraines in this episode, but first, let me introduce you to Sally Herships. Do you want me to just say I'm a reporter? Or do you want me to say I'm Columbia or Radio Bootcamp or I'm a lady who gets migraines? Sally is all of those things. She is an award-winning reporter, she teaches audio at Columbia Journalism School in New York,

[00:00:28] and she also runs Radio Bootcamp, an online platform for audio training. Sally and I teach together and she's my friend. Aww, you're my friend too. But she's also a lady who gets migraines. So I asked her to tell me a story about what having a migraine feels like so I could understand it better. Is it the time I had to make my sister take me to the ER or is the time I like got off the subway and started puking? We're gonna go with the subway story.

[00:00:56] All right. So I wake up. I'm like, oh, it's raining. I have a headache because it's raining. It's barometric pressure. And I'm trying to get dressed and I'm trying to like scrape myself together to do work and eat something. And I'm starting to feel queasy and the pain is coming on. I pop a pill, like, I don't know, like migraine, etc.

[00:01:30] So I'm lying down and I'm like, maybe this will help. This is gonna help. I just have to like give it a little while. Oh, God, I still have work to do. So I'm like checking my work email and I'm just feeling worse and worse. And then, you know, the feeling when you're like, wow, now I'm so nauseous that like if I move, I'm gonna puke. And then I do start puking. And I'm like, okay, but like now that I've thrown up, I'm gonna feel better, right?

[00:01:58] Right? Like, because you throw up, usually you feel better, like if you have the stomach flu or something. So I'm like lying there and the pain's getting worse and worse. And it's just like pounding. It moves all around my head. It's like in the back of my head, the front of my head, my sinuses. I'm really nauseous and I'm starting to feel worse and worse. I need to go to urgent care because the pain is so bad and it's been so many hours and it is not abating.

[00:02:31] I've sort of learned there's a rhythm. It's almost like a tide. Like the tide comes in, you learn all these symptoms. And like for me, one of the symptoms is pain that like I feel in my teeth, which doesn't make sense. Maybe my gums, like it starts throbbing in my mouth and like moving down through my lower back, my neck. And that for me is a big sign like, okay, I think this might be on its way out, but that is not happening here. Like the pain is just in my head, incessant, boom, boom, boom.

[00:02:58] And I'm so nauseous. And then I'm like, all right, I got to like peel myself out of bed and get myself to urgent care. So if I can just get up out of this bed, put clothes on, get to the subway without puking all over everything. So I do that. I'm on the train. I'm bent over with my head in my hands because it's just so bad. And you know when you're car sick and like you're stuck in a car? That's what it's like to be on the subway when you're so miserably sick. Like I cannot even tell you how bad that feels.

[00:03:33] I come up out of the subway and then I'm like, uh-oh, this is it. I'm going to throw up in the street. I make it up out of the subway escalator and I just make it to the street. And these people come running over to me, which is really nice. This one guy is like, lady, are you okay? And he like got me, he's like, do you want some water? And so he goes and buys me a bottle of water at a deli.

[00:04:02] And this other lady came over and she was telling me that she's a nurse. And I was telling her I have a migraine. I feel really miserable and I'm on my way to urgent care. And so she offers to walk me there and she did. And I was like, wow, she's like my guardian angel. So she walks me to the urgent care. And that is where when I get there, they're like, oh, you have a migraine. They stick you in a dark room, they turn off the lights and they give you this drug on Dansetron, which is given to cancer patients.

[00:04:30] It's anti-nausea and it dissolves on your tongue. And it's like heaven. It makes the nausea go away. Little tiny pill. It's like the size of a pill for a frog. It's so small. And so they give me that. And I think the doctor is asking me if I want sumatriptan or if they want intravenous drugs. The pain is still there, but even just having the nausea gone is so much better.

[00:04:55] And then she gives me sumatriptan and like slowly, slowly, slowly the pain starts to go away. I have to ask my husband to come get me because by this point I'm like a sweaty, limp, disgusting mess. Like, you know, the way you are if you're like puking on the street in New York City. And he comes and picks me up and I'm just like exhausted.

[00:05:27] All of this pain from a migraine. And Sally has been dealing with migraines for about 20 years now. She's been documenting that experience through audio diaries. The things I was thinking about, I was thinking about that it feels like the medication I take, it makes it feel like it's really tight in your chest. This is Overlooked and I'm Golda Arthur. I'll admit that before I had this conversation with Sally, I thought a migraine was a super bad headache.

[00:05:56] Not something that impacts your body from top to bottom. And the other surprise for me? What happened is I'm a lady who's in her 50s and like hormones happened. That is what happened. We know that migraines affect three times more women than men. And we know that hormones and estrogen in particular play a role in why. But there's still a whole lot more that we're not sure about when it comes to this connection between hormones and migraines.

[00:06:25] In this episode, we talk about that long journey with migraines and how Sally has learned to deal with them. That's coming up after this break. Hey listeners, here's another podcast that we love here at Overlooked. Take a listen and you might love it too. What do you want to do next? I'm Patsy Day, co-host of The Wobbly Middle, a podcast about women navigating the wobbly middle of their careers.

[00:06:54] We speak with women who've made bold moves, like a lawyer turned professional chef and a midwife, now femtech innovator. Their stories show us that our midlife is full of possibility. If you're in the middle of your own wobble, let's figure it out together. Subscribe to The Wobbly Middle wherever you get your podcasts. Now, back to the show. So Sally, welcome to Overlooked and thank you for agreeing to talk to me about migraines. Thanks for having me.

[00:07:23] So you and I sort of talked briefly about migraines before just in conversation. And I found myself thinking about it for a long time afterwards because you've been actually dealing with migraines for many, many years. When did it first start? Or when do you recall paying close attention to it? I think that the headaches may have started in my 20s. I'm guessing my late 20s.

[00:07:48] But the first time I really remember being conscious of them was when I was a reporter, I want to say in my 30s. And they were debilitating. Like I started getting these awful headaches and they were really scary and really bad. And I felt like I was going to die. And I was like popping all these pain pills. And mysteriously, they were not helping. But I went to a neurologist. Someone was like, go to a neurologist. So that's like my first memory. And she said, try these pills. And if these pills work, it's a migraine.

[00:08:18] That's how you'll know. And I went home and I took a pill. And it had these weird side effects, which I really didn't like. But it made the migraine go away. And I was like, oh, I guess I have migraines. What was the pill? It's a triptan. It was sumatriptan. I still take it to this day, like once or twice a month. Sumatriptan constricts your blood vessels, right? Because a migraine is when they get inflamed. And so sumatriptan constricts. And I was like, wow, it feels like there's an elephant sitting on my chest, which I'm not into.

[00:08:47] But also I'm really into the fact that this like debilitating pain is gone. Can you tell me a story of what debilitating looked like? The pain is so bad. It's so scary. If you don't know what it is, it can be really scary at first. You're in bed. The lights are out. I have a little eye mask. I look like a lady from like a 1920s advertisement with like a satin eye mask on. The shades are drawn. You can't bear sound. I can't stand smells.

[00:09:17] And it just kind of like goes on and on. So when you say migraines, for the uninitiated, a migraine is like a very bad headache. But what you're describing is not a very bad headache. It's a thing that affects your whole body. Oh, yeah. I don't know what a headache is. I mean, first of all, I should say I always feel bad talking about this. Like it's a big deal because I know there are wars going on. And like we're so lucky.

[00:09:43] I have a, you know, a safe house and a bed and clean water and power and all these things. So I feel like it's a first world problem. But they still are pretty awful. So given all of that. So a migraine, everyone has different symptoms. But I get some really common ones, which are that I can't think clearly. Sometimes I lose my words. Like I might see in my head a picture of you and be like, wait, who is that? Like I know her. I can picture your place in my life.

[00:10:13] Like I know you're my friend. I know we've talked with each other all these years. But like I just can't think of the word for your name. So there's like kind of this brain fog, this horrible pain, nausea, right? Kind of incessant puking, total exhaustion. And you just you can't function. So I don't know. Is that a normal headache? Like I don't know what a normal headache is. What is like a normal headache like? What is normal?

[00:10:42] I mean, I guess when I get headaches and I do get headaches, it is nothing like what you're describing a migraine. You started recording audio diaries. And in a way, you know, so that's our that's our medium, right? And we think in sound. We work in sound. Why did you start to collect these audio diaries? Yeah, I think for a couple of reasons. One, I was spending a lot of time in bed.

[00:11:10] Today is Friday. And I'm just finished writing a show. Now I'm kind of curled up in the fetal position. The pain is really bad. But I think this is one of the reasons it's good to work at home sometimes if you have migraines because they just hit you. I don't know how to lie down in an office. Anyway, it's October 2021.

[00:11:41] And, yeah, it hurts. Lying alone in a dark room for hours. I have a migraine or an almost migraine, which I've been fighting all morning. So I guess I'm just lying in bed right now and I'm kind of wishing it would just come already, you know, because once it starts, then you know it'll eventually stop. So it's almost worse waiting for it to come. And I have to teach a class tonight, so I'm trying to just, I'm just like, come on, migraine. Let's do this.

[00:12:11] Like you and me right now. Like, it's kind of like just kind of hanging out. I couldn't read. I couldn't watch TV, right? You're also sensitive to light. So like even the light shining through the window is too much, right? I'm wearing an eye mask. They're blackout curtains. I mean, the pain sucks and the nausea sucks and all that, but like the worst part is just kind of like lying here and letting life pass by. Like, I think it's like 1130 or something.

[00:12:38] I don't know if my eyes shut in the morning and it's like sunny outside. And, you know, I want to be up and working and doing things, but I can't. Most of the time you're kind of missing out on life. At one point, it felt like a quarter or a third of my life was just spent lying in the dark. I don't know. It takes a kind of certain amount of strength or wisdom to just know once you get one of these suckers, you just kind of have to give in.

[00:13:02] And so I was trying to find like a silver lining, like desperately, like maybe, maybe there's something good about this. And I was like, well, I'm spending a lot of time in introspection. Like I'm spending a lot of time thinking. October 21st, 2021. I just realized what it feels like. It feels like I am lying in bed. You know, my eyes are shut. The covers are over my head. It's kind of dark or dusk.

[00:13:30] And you have all these thoughts that are like balloons and they're all bobbing around, you know, in the air, tied up in a little bouquet or something. But I'm stuck down here. So, yeah. Like you mentioned, it's what we do.

[00:13:54] And so when other bad things have happened in my life, as my Aunt Lucy, a documentary producer, describes it really well. She said we use the process of like documenting to create structure, purpose and meaning out of these really difficult times. So it was a way for me to try to make the best of it. And I listened to those, to some of your diaries and was really actually shocked that the migraines had been going on for as long as they did.

[00:14:20] So did they change in nature or did they stay the same as you got older? I think the migraines stayed the same, but I changed. So I used to try to fight the migraines, right? Like we're Americans. We're supposed to pop a pill and like get back to work. But you can't fight a migraine. The migraine always wins. That's my rule. So I used to take a pill and try to muscle through. And that's what I would end up puking in the street. Like I can't tell you how many times I've ended up puking in the street.

[00:14:49] Pink puke because I used to take Pepto-Bismol before I learned about the good drugs. And so I changed and I learned, okay, you're not going to win this. It's like trying to fight the ocean, right? Me versus the ocean. Not like who's going to win? Ocean, migraine. So I started thinking there has got to be better options out there. Like what can I do to stop this? Because it was so miserable. And I always felt bad. Like there are all these times in my life where I haven't been responsive to friends and family.

[00:15:17] And I'm always worried people think that I don't like them. But it's really just because like I'm lying alone in a dark room feeling shitty. Yeah. Was there a moment where you thought, okay, there's got to be a better way? Or was it a gradual realization? There were, I think, two moments. One was when I think I was in my 30s. Could have been my 40s. I don't know. It was a long time ago. When that time when I was working at Marketplace. And I think I was just getting migraine after migraine.

[00:15:43] And I went to this neurologist to see if I had migraines. And if so, like were there better drugs? Because the pills I was popping weren't working. And she gave me sumatriptan and it helped. But then I also remember asking her just like on a total whim, like can diet have something to do with this? And she handed me this like, remember Xeroxes? Do you remember like? Yeah. Yeah. She handed me like this fuzzy Xerox sheet. It had like a list of five things on it.

[00:16:11] It was like chocolate, wine, coffee, like cheese. Like these things can cause migraines. And I was like, what? Like this is what I eat every day, all day long. And I basically realized I was eating the foods that cause migraines like all day long. But that was not a complete list, Golda. That was the thing that frustrated me. I was like, wait a second. This neurologist is giving me this handout of like five foods. And I was a little, right? We're journalists. I was like, I'm going to fact check this. I'm going to do my own research.

[00:16:41] And I went on the internet, a place you can go. And it turns out there are all these things you can't eat and all these things that can cause migraines. And so that was one of like two key moments where I was like, hold on. What are the other things you can't eat? Now I have to know. Oh, my God. So there's an ingredient, a naturally occurring ingredient in foods, which I may or may not be. Pronouncing correctly. It's called tyramine. And people have a lot of misconceptions about migraines.

[00:17:09] They think like citrus fruits is one random example and avocados is another. They have tyramine in them. People think like, oh, I can eat an orange and it may trigger a migraine. That's not the way it works. Like our bodies are so complicated, right? We're all like delicate butterflies. And the amount of tyramine in your body, if I'm understanding correctly, not a doctor, but builds up.

[00:17:30] And depending on like how much sleep you've had and like, I don't know, where the moon is in its cycle and all these other crazy things, you can tolerate a certain amount. So it depends on like if you're hydrated enough, if you have enough sleep, where you are in your lady cycle and all these other factors. And that really has to do with how much tyramine. Like I can have a little piece of chocolate sometimes and I'll be fine. Other times I'm not because I didn't get any sleep.

[00:17:59] Right. So you have to really be so careful. Oh, my God. Tell me, Sally. You basically have to like wrap yourself up in cotton, like a mummy. Like I'm wrapped up in cotton gauze, like perfume. Huge migraine trigger for me, which is not tyramine. I haven't even bothered to research that one. I don't care because I loved perfume. I had like Liz Claiborne perfume when I was younger, bottle of Fendi. I love this Earl Grey perfume. And then when I got into my 30s, I started getting super sensitive to it.

[00:18:27] I cannot be near people with perfume. That is an immediate like bed, bath and beyond. I couldn't even walk through the door like a candle store. Can we discuss air freshener, mop and like Mr. Clean? Like that stuff, even thinking about it makes me want to puke. Air fresheners in taxis. I carry a mask with me. Once I learned to control my diet and what triggers were and I had a pill I could take. It was not great, but I think I just kind of did what a lot of ladies do,

[00:18:56] which is just like shrugged my shoulders and was like, OK, I guess I'll just have some shitty migraines like a few times a month now for like the rest of my life. Like, all right. And I kind of did that and just went along with it for like 10 or 15 years. And every three years or so, you know, my husband has to take me to the urgent care because they were so debilitating, so much puking, so much pain. And they hook you up to an IV and they like give you intravenous drugs.

[00:19:22] But then that all changed within the last year. That was a turning point. Oh, I'm so excited. OK, that's a great tease. What changed? Well, I am now. Oh, God. Wait a minute. I'm 52. I'm pretty sure I'm 52. Like, I'm in my 50s. That's what changed. And the clue that I should have taken but didn't was when my younger sister called me like a year ago and she didn't get migraines. It was like, I'm having these awful migraines.

[00:19:52] What should I do? And I was trying to give her all this advice. And it just like didn't occur to me because she's younger that she was going through perimenopause first, which we've now figured out is what's happened. So she had this stretch where she was miserably sick with migraines, like debilitating migraines day after day after day. And that should have been the foreshadowing in My Hero's Journey that like bad times were ahead.

[00:20:17] So what happened is I'm a lady who's in her 50s and like hormones happened. And that is what happened. I got crushed. I've never been sicker in my life than last spring. What did that look like? Oh, my God. An angry husband. A miserable vacation.

[00:20:41] Like we were, I think we were away in Maine and I started getting a migraine every single day. Every day. They would happen at night, which makes it even worse because you think we're tired. You want to sleep when you have a migraine. And I couldn't. So I would wake up and I would have this awful, like awful migraine. And the thing with sumatriptan is you're really only supposed to take it, speaking loosely, like a couple of times a month because you can get rebound headaches.

[00:21:10] This is not a pill you can pop every day. So you're kind of like out of options. So I'm like swigging Pepto-Bismol. I'm lying awake at night. I was buying ice packs. I was propping myself up on pillows like I couldn't sleep. And I did like Zoom appointments with the physician's assistant at the neurologist. I mean, every day called a migraine every day, like every single night.

[00:21:37] And it would go away for a little while in the morning and a little while during the day, come back. And then there was like one period of time in the afternoon for a few hours where I'd feel like, OK. But that went on. That was from June to October every single day. They put me on. We tried so many different drugs, anti-inflammatory, a steroid. I went on Valium at one point. I was just crying.

[00:22:06] I was crying every single day because I was I couldn't sleep. Like I know first world problems, but like it did suck a lot. It was pretty bad. For it to continue with that intensity for that amount of time. Yeah. That's a lot. I mean, do you ever think that? Listen, I ask this question because I think about grief a lot these days. But do you ever think about sort of what this migraine took from you? Right.

[00:22:35] That most precious thing, the time that it is taken from you. You've talked also about your relationships with people and how much of a toll the migraines have taken on that. But do you ever think about it in that lens of like, here's what this thing has taken from me? I think when I first started getting them, I felt that way. And then I tried to retrain myself to think, to feel like that's I think one of the reasons I was recording. I was like, what can I learn from my migraines?

[00:23:03] So I can try to find some kind of gratitude. Like, I was trying to think, why is this feeling that I'm feeling bad? Maybe it's just a feeling. Maybe it's just a sensation, like this throbbing, pounding. But I did. But I tried to do that. I don't know. I just tried to focus on that. And I focused on the fact that like, wow, OK, I have a high pain threshold. So that's something I can be grateful for. And I've learned resilience. And I've learned to be grateful for days that I feel well.

[00:23:33] So I've tried really hard to focus on those things. Because otherwise, it'd be kind of a bummer. And what about now? How are things now? I will tell you, things are much better. I was like in a pit. It was bad. The migraine pit. Things are much better now. And it's hard to say why, right? One of the things that I did for the first time is I did Botox. Which is not like a new thing. People have been doing that. So I did that. The first time I was like, I don't know if this is helping.

[00:24:02] I haven't had my period since September or October. That's, I'm convinced that's a big change. All roads lead to hormones? Yes. Question mark, yeah? Yes, 100%. Do you think that that period of intense migraine activity last summer was related to you sort of just entering full menopause? Yeah.

[00:24:29] So I wasn't, full menopause is when you haven't had your period for 12 months, right? For a year, yeah. That will be this September or October. And I, gold of fingers crossed. Yeah. So that was perimenopause. Yeah. I was getting my period. It was like, hey, you haven't had your period in two weeks. We're back. So I was getting my period like reruns, like all the time. So I think that's what was happening. That it was like a fish flopping around. Like my body was just like all over the place.

[00:24:58] 100%. Did any of your doctors at any point say to you, Sally, this might be related to your hormones? 100% yes. And my doctors are great. I love my general practitioner. I love my neurologist. I love the OBGYN that I went to see. So this is not their fault. But I will share with you, Golda, something that I have vented about and I vented to you about. Like basically everyone's like, this is probably related to perimenopause.

[00:25:26] And then the question is like, well, what can I do about it? And the answer is kind of like a giant cosmic shrug. Like hormones, right? Like hormones could help. But guess what? When you have migraines and you go onto websites for like esteemed research hospitals and medical providers, they're like hormones may help with migraines, but they also may make it worse. That's literally what it says. Good luck. Yeah. Yeah.

[00:25:54] So you're not right now, you're not on any hormones. No, because I tried it. I tried it once and I immediately got slammed with a migraine. And the doctors are like, well, we don't really know why. No one knows. And I'm like, wait a minute. Like half the world's population has a period. And women tend to get more migraines than men by a large number. Yes, that's right. And a lot of them are related to their lady cycles, right?

[00:26:24] To their periods. How could no one, no one knows? If you're suffering from a debilitating migraine and you take a pill and you get another migraine, it could just be that you've gotten another migraine. And it could also be from the pill. Are you going to take another one? Like, it's kind of terrifying. Yeah. Yeah. Why do you think, I mean, okay, I'm not going to ask. Why do you think medicine doesn't know?

[00:26:47] But when it comes to migraines particularly, do you have any thoughts on like why so little research time has been devoted to it? So I should say a couple of things. One, there are a lot of new treatments that have just started coming out. And so when I went to my doctor this past summer, virtually from like my little pit of migraine hell or around that time, she was like, wow, you haven't been in in three years. We have all these new drugs.

[00:27:14] Because the last time I'd been there, they were like, here's what we have. And I was like, I don't like those drugs. They're scary. But there are a lot of new drugs now, which are great. So there has been a lot of progress. And then the other thing is like, aside from just making sweeping assumptions, which I'm super loathe to do as a journalist, I mean, my guess is that migraines affect women more than men. And that's probably like a big reason why. Like we know that, right? Statistically, there's a lot more research about things that affect men. Yeah. So why bother?

[00:27:45] Yeah. That's why I started this podcast, because it seemed to me that we didn't know much about the ovaries to begin with. And why was that the situation? I am hopeful that, you know, this is not in any way to bash medicine, because I do think things are changing. And it's great to see that there are new medications. You know, when you look back on this, it's been 15 years of migraines, 20 years of migraines.

[00:28:08] Was there anything that when you look back on it, anything that you see differently or anything that surprised you or anything maybe that you wish you had done differently? Yeah. I mean, the very first time I went to a neurologist and had to ask if there were dietary things, like, that's crazy. That, like, if I could go back and give advice to my younger self, like, no. Like, that's awful. Like, you should not be puking in the street.

[00:28:38] You should not try to fight through a migraine. Like, that's crazy. That's number one. The second thing that really was so surprising to me is as I became a lady in my 50s and when I went to ask, will hormones help with this? And that the answer was just, like, a kind of, like, I don't know. That was really surprising to me.

[00:29:08] I was like, what do you mean you don't know? How can you not know if I take a pill, if it's going to, like, me and the other millions of migraine sufferers, if it's going to make us, like, puke and lie in bed or end up in the ER or miss work, miss events or, like, help or have no effect at all? Like, how can no one have looked at this? Like, this is not a rare condition. Migraines are one of the most common conditions to impact people.

[00:29:46] How can this have not been looked at, I think, is the thing that's surprising to me or, like, appalling. What is, do you think, the most overlooked aspect of migraines? Is it what we've just been talking about that nobody's looked at it?

[00:30:15] And where do you think that the inequality caused by that, where do you think that inequality is felt most deeply? Women's pain. Yes. That's the answer to both questions. Women's pain. Yeah. Well, Sally, thank you so much for just sharing all of this stuff with me. And, you know, look forward to the day that things change in this respect. Thanks, Golda. Me too.

[00:30:44] Overlooked is here for information and empowerment, but not medical advice. Every person's body is unique. So if you have questions, it's best to speak to your doctor or healthcare provider. We're building a community around women's health so that no one is overlooked. If you'd like to be part of it, hit the follow button on this podcast wherever you're listening to this. Or you can show us some love by writing us a review and sharing this episode with someone.

[00:31:14] Overlooked is written and created by me, Golda Arthur. Jessica Martinez-Dijos is the show's producer. You can stay up to date with the show by signing up for the newsletter and following us on Instagram and LinkedIn. We read every review and email. So write to us. Hello at overlookedpod.com. Thanks for listening.