People tend to talk about “migraines” as though they’re just really wicked headaches. That’s way off base. Migraine is a neurological condition that often involves far more than intense, throbbing head pain—though that’s already plenty to deal with, all by itself. About 12 percent of all people will ultimately experience migraine, which can develop at any point in life, though it’s most prevalent among women, and symptoms most often emerge in adolescence or young adulthood.
There are several types of migraine, defined by distinct symptom profiles. (Some people use the plural “migraines” to describe the headache attacks associated with the disease, but most advocates and experts use the singular “migraine” for the overall condition.) The condition is also so idiosyncratic that the nature of symptoms can vary even among people who have the same diagnosis. But most people experience attacks of head pain, often accompanied by symptoms like nausea, sensitivity to stimuli like light and sound, and stiffness and fatigue. These attacks typically last between four and 72 hours. In the hours or days before attacks as well, most experience symptoms like vision problems, mood changes, or tingling or numbness. After attacks, many experience a prolonged “migraine hangover.”
However a person experiences migraine, their symptoms can affect every aspect of their life, including sex. A few recent studies suggest that sex and masturbation can alleviate some people’s migraine symptoms. But the pain and discomfort of the condition make it hard for many people to get into sex, or to orgasm. Every person with migraines also has their own set of contextual triggers, which can bring on or exacerbate their symptoms. Some report the exertion, smell, or sounds of sex, or the experience of orgasm, as triggers. Studies also suggest that people with migraine are especially susceptible to “sex headaches,” a disorder triggered by muscle tension during sex, or by orgasms.
Migraine is still understudied, underdiagnosed, and undertreated; experts aren’t even sure what causes the condition, much less how to cure it. Most treatment also focuses on identifying a person’s triggers, helping them find lifestyle tweaks to avoid or mitigate them, and figuring out a mixture of medications to limit the risk, or reduce the severity and duration, of attacks. (Some of these medications can further suppress a person’s libido.) So it’s often hard for people with the condition to find guidance on navigating physical intimacy.
In an effort to present a frank account of one person’s experiences with sex and migraine, VICE spoke to CarmenRose, a woman in her 20s with chronic migraine, and her partner, India, about how they manage their sex lives.
CarmenRose and India requested that VICE omit their last names for their privacy. This interview has been edited for length and clarity.
CarmenRose: Unlike many people with migraine, I have no family history of it. I developed symptoms a few years ago, in my early 20s. For three years, the doctors I saw told me they’d go away and I’d get better soon. Then, I went to a doctor for an annual physical and mentioned that I got headaches four or five times a week, and really bad ones maybe four times a month—which I thought was normal by that point. That doctor told me to see a neurologist. So I did, and she diagnosed me with chronic migraine last June.
I’ve been trying a lot of medications since, but I still haven’t found a treatment that’s great for me. My symptoms have gotten worse: Starting last fall, I began to feel pain every day.
My headaches feel like hot knives stabbing my eyes. But migraine is about so much more than just that pain during headaches. I’m nauseous all the time. I’m really sensitive to light, sound, and smell. I get bad brain fog, and I have problems with my memory. All of this affects my anxiety and depression. It’s been a really tough journey.
I hadn’t developed serious symptoms yet when India and I started hooking up. So there was a stage of our relationship without chronic migraine, and then a stage of our relationship with it.
India: My mom developed migraine a few years before CarmenRose and I got together, and she mentioned how bad it could be. But I didn’t know all that much, medically, about migraines and their effects before CarmenRose got her diagnosis. When she started first developing symptoms early in our relationship, neither of us understood what was going on.
CarmenRose: My constant nausea, and the effects of all my symptoms on my mood, had an immediate effect on our relationship. I didn’t feel good about my body. I wasn’t in the mood for physical intimacy.
India: After CarmenRose’s symptoms started to develop, we didn’t stop being intimate, but the nature of our intimacy changed. Eventually, I became the one who always initiated intimate moments. That was hard for me, because I don’t always want to be the one in that role. I want my partner to chase me, too. At the time, CarmenRose wasn’t able to take that role on.
Then, when did we had sex, it was rare for both of us to walk away pleased. Either CarmenRose would have the energy to please me, but then she wouldn't feel well enough for me to touch her. Or she’d say, “OK, I don’t have migraine symptoms today so I can receive pleasure,” but after I pleased her, she wouldn’t have the spoons left to give me pleasure in return. That was hard, because I’d gotten used to us both being able to enjoy sex in that same way, at the same time.
CarmenRose: Before I developed symptoms, we’d both be able to get off during sex. After they developed, I had so much less energy that only one or the other of us could get off. Sex always ended with me starting to feel sick and having to tap out, too. Things were so different from the sensual, romantic sex we’d had before.
All of this was especially hard to deal with for us, because India’s love language is physical touch. Which isn’t just about sex, but every part of physical intimacy. That helps her know I’m attracted to her.
India: It can be holding hands, grabbing each other’s butts once in a while, kissing for more than 10 seconds, or anything like that. Showing up physically is really important to me.
CarmenRose: I’m more emotional and sensual. My sex drive was lower to begin with. So I might not have noticed the change in our physical intimacy as much on my own. But after my symptoms developed, we started to have conversations about how we were growing less intimate than we used to be. During those conversations, India would get frustrated with me. I got frustrated, too, because here I was trying to figure out what was going on with my health, with my head and she was, what? Worried that she wasn’t getting laid as often as she used to?
India: Whenever we got into arguments about this, it felt so intense.
CarmenRose: At one point, India explained it like this: “What if I didn’t show up for you with emotional support for months in a row?”
I said, “Oh, I’d leave you. That’s it.”
She said, “What about showing physical support for me?” It was a lightbulb moment: If I expect you to put in effort to emotionally support me, I can put in effort to show up for you in a physical way. Some people may think that if your partner cares that much about the physical side of things, then it’s not a good relationship. But that can be really important to some people.
India: For some people, the physical aspects of a relationship are a really important way to feel close to their partners. It should be OK to talk about our needs for sexual intimacy and support. At that point, I didn’t feel like my needs were being met, so I expressed that. The beautiful thing about intimacy is finding things that work for two people—or more—and their needs.
Gradually, we both came to understand migraine’s effects on CarmenRose. We’ve gotten better at identifying her triggers—and at talking about our experiences. That’s put us on a path to figuring out how we can show up more for each other, rather than feeling like, We don’t know what’s going on or how to respond to it.
CarmenRose: I’ve realized, for example, that when I’m nauseous, using my mouth makes me feel even more nauseous. A lot of oral action is hard for me. I’ll be completely honest, India really enjoys when I suck on her nipples, and it’s low-energy, so it’s easy to do. But because of that trigger, it makes me feel sick. That means I’ve started associating sucking on her nipples with the negative experience of feeling more and more sick. I have to talk my brain out of making that association. Also, I’ve recognized that sometimes the smells associated with sex are so strong that they can make my symptoms worse.
Managing those things in the moment can be hard. We’ve discovered that bringing masturbation into our intimacy works well for us. But India wasn’t initially comfortable with that.
India: Yeah, before CarmenRose and I got together, I actually didn’t know how to masturbate. I didn’t lose my virginity until I was 22, and I’d only been with one person before her. I know that’s odd, for someone who puts so much value into physical touch and sexual intimacy! I think part of why that's so important to me may be that I saved myself for someone for so long, which meant I never got the chance to fully learn my own body.
As CarmenRose’s symptoms were first developing, we also had to go long-distance for a while due to the start of the pandemic. On the phone one night, she encouraged me to explore myself. I did. It was the first time I was ever able to please myself.
CarmenRose: That was the start of our troubleshooting our sex life: I wanted India to be able to find pleasure without me so that I didn’t feel like it was entirely on me to please her when I couldn’t. There is so much stigma around this: Why is your partner masturbating? Why aren’t you doing that for her? But we can masturbate together, each doing our own thing, and that’s still an intimate experience. That’s been a beautiful thing for us. I can be sick in bed with a migraine, and India can do her thing, and we feel close and both of our needs are met.
India: On my end, I’ll take literally any kind of intimacy with CarmenRose. I like it when she touches or kisses me, when she helps me on my way to my destination. But she doesn’t have to drop me right at my bus stop. If she helps me get a couple blocks nearer to it, that’s good for me.
India: I don’t know what would have happened in our relationship if I hadn’t learned how to please myself before CarmenRose’s symptoms got worse, because masturbation has really helped me to cope with the changes in our sex life. It helps CarmenRose with her symptoms, too.
CarmenRose: It feels like no one in the migraine communities I’m part of talks about this. When I’m doubled over in pain and nauseous, I’m not thinking, Wow, now would be a great time to masturbate. But I’ve found that sometimes that sensation is the only thing that can break through that pain.
A couple weeks ago, I had probably the worst attack of my life. I take medication every day, and another medication whenever I feel an attack coming on, and I have a whole toolkit of things I do to deal with the pain and discomfort. Nothing was working. The pain was so bad, I felt like I might need to go to the emergency room—and it was getting worse. It’s hard to describe, but when you have an attack that bad, you’ll try anything to make it stop. I tried masturbation as a last-ditch effort, and it broke through the pain enough to allow me to go to sleep, which is very important for me in managing an attack. (Interestingly enough, using masturbation to deal with pain hasn't affected the way I feel about masturbating at other times.)
Learning to recognize and avoid my triggers outside of sex has also been one of the most helpful things for our sex life. Like, I can think, Our anniversary is coming up, and I want us to be intimate after dinner, so I’m going to avoid triggers that day. I’ll spend extra effort taking care of myself, because I want to reach that goal.
India helps me regulate triggers, too—which is really helpful, because my brain fog means I don’t always remember important stuff, like bringing my water bottle with me when I leave the house. If I don’t stay hydrated, I’ll get a migraine.
India: I can help CarmenRose control her triggers by controlling my behavior, too. Like with arguments. I grew up in a toxic household where you say what’s on your mind, cuss at each other, then walk away and don’t talk about it again. That way of communicating really upsets CarmenRose, and when she’s upset enough that she cries, that’s a reliable trigger for her. I now make the effort to not walk away; we both cool off for a second; then we finish talking things through. That helps her migraine symptoms. It’s also making us healthier in our relationship communication, overall. All of which helps us with intimacy.
CarmenRose: There are still some triggers I can’t handle yet, like going from high adrenaline to low. And, as we’ve been talking, I’ve realized that, while we’ve tackled enough to allow us to be sexual together, I’m still working on getting to a place where I can feel sexual just for myself again. I’m looking forward to reaching a point where my condition plateaus, and my symptom management is stable enough to allow me to focus more on my own personal sexual journey.
India: Do you think you’ll be able to discover new ways of being there for yourself sexually, too? Because right now, so often, it really is you being there for me, honestly.
CarmenRose: I think so. In part because, before we got together, my sexual exploration had been limited not by health issues, but by my negative experiences with men. Like, I shut the door to anal stimulation completely based on so many negative experiences. So there are many things I can explore in the future, once I can get to a good place to do so.
India: We’re still learning about ourselves and how we can meet each other’s needs. Even in this conversation, I think we’ve both realized there are still things we haven’t said out loud before. But that just means we can open up even more with each other going forward.