Medical experts don’t know much about what causes Ménière’s disease, a vestibular disorder (meaning, part of a category of conditions related to dizziness and imbalance) that causes a periodic build-up of fluid in the inner ear accompanied by bouts of pain, tinnitus, and vertigo. Some people with Ménière’s experience relatively light, infrequent episodes that last a few minutes, while others end up with the spins for hours, which can lead to nausea, vomiting, shakiness, and blurred vision. Some have rapid “drop attacks,” symptoms that appear out of nowhere and may cause them to suddenly collapse, while others feel a slower build-up of symptoms. Some only feel symptoms during episodes, while others feel off balance or mentally foggy long after.
What is known about Ménière’s is that episodes start soon after someone with the disorder experiences a trigger. Alcohol, caffeine, salt, and stress are the most common, though certain physical activities can also be triggers for some—including, in some (possibly underreported) cases, sexual exertion.
Even people whose episodes of Ménière’s (or other conditions like it) are not triggered by or during sex often find that the condition can affect their sex lives. One study suggests that people with Ménière’s experience elevated levels of sexual dysfunction compared to the general population, thanks to the disease’s stresses and complications. It can be hard to feel sexual while coping with lingering the disorienting or fatiguing aftereffects of a recent episode, or with anxiety about possibly triggering a new one in the future.
VICE recently spoke to Steven, who developed Ménière’s while in college, and his partner Val about how the disorder has affected their sex life and wider relationship over the years.
This interview has been edited for length and clarity. Steven and Val's names have been changed for privacy reasons.
Steven: In 2010, I started experiencing a lot of brain fog and fatigue, although I didn’t have the words for that at the time. I just knew I wasn’t feeling good. I was out of it and unfocused, and I had a sense of imbalance and dizziness on and off. I was in college and my diet wasn’t great—I was eating a lot of fast food—so I thought, Maybe I’m just tired.
Things slowly got worse over the course of about six months. After big meals, I got violently sick. I thought I was maybe getting food poisoning over and over, but really it was nausea caused by vertigo. The room would be spinning, and I’d be throwing up, but I’d just shrug it off because I’d start to feel a little better afterwards. I felt like something was wrong—but also like I was invincible, or something.
Val and I had been dating for about a year when my symptoms started up. One night, we went out to a steak house where I had a bacon-wrapped fillet and french fries. So, a lot of salt, which I’ve since learned is a big trigger for me. Then we went to a coffee shop. I got dizzy and ran to the bathroom to violently throw up. That was the first time I wondered how my health problems would affect our relationship.
Val: He needed help—he literally had to text me to come to the bathroom to help him.
Steven: I was a mess. I felt guilty and ashamed. I didn’t want her to see me like that.
Living with those symptoms, it’s hard to get in the mood, to connect on a sexual level. They make me not want to have sex. They also exacerbate my underlying anxiety, which affects my ability to get into sex when I do have it. When that happens, I get in my own head and can’t lose myself in the moment.
Val: In the first year we were together, we had sex every day. But by the time this started, we’d settled into our relationship and weren’t a high-libido couple. Once a week was fine for us. Even in those early days, before Steven had a diagnosis, we still had sex once a week. Although, Steven, when we were younger, did you sometimes not feel well and try to have sex anyway?
Steven: Yeah. I never had an episode during sex, though. I’ve never had drop attacks, where things escalate with no warning sign. There’s always been a pattern of escalation.
Val: It’s always been like the emergency alert colors: yellow, orange, red.
Steven: If I’m not feeling well long before I have an episode, I’m already not feeling sexual.
Val: Because we didn’t know what was going on, every day was unpredictable. He might have a cup of coffee, which we later learned is a trigger, then all of a sudden it was a bad day. I felt a lot of empathy. But I didn’t think this was going to be a big thing. I wanted him to go to the doctor, but I thought he might have a weird gut bacteria and there’d be some magic pill.
Steven: I had a major vertigo attack after eating Wendy’s at Val’s apartment. The room was spinning and I couldn’t get off the couch. It was way worse than anything before. It lasted for a few hours and I was a shattered shell at the end of it.
I went to the doctor’s office the next day. He told me that I might have Ménière’s disease, and that I’d eventually lose my hearing in both of my ears. It was terrifying. I went into a downward spiral of anxiety, despair, depression. I felt like I was going to get worse and worse. Val was there for me, but I had this fear about what might happen to us later.
Val: Once he got diagnosed and I realized this was going to lead to lifestyle changes for him, it was a little scary to think about what that might mean for us. I thought about silly things, like, What if I want to go on a roller coaster, but he can’t? But none of that was a dealbreaker.
Steven: I had a lot of anxiety in those early days about what this would mean for my sex life—but also for my life overall. Would I even be able to have one? Because I was so miserable, Val and my family pushed me to get a second opinion, so I went to a specialist in balance disorders and he told me about Ménière’s patients who were doing well, and that my hearing could be protected if I got a handle on my lifestyle. (He was right. My hearing is still good.) I had hope again after that. I said, “I’m going to do everything I can to figure this out.” A few triggers became obvious really fast—like caffeine and sodium. I’m lucky, because every case is a little different and a lot of people never figure out how to manage things. But I started to figure it out early on.
Val: That was a turn-on—that he was committing himself to working on it and making these changes.
Steven: Now, I’m mostly free of major symptoms. I haven’t had a vertigo attack in a while. Still, it’s easy for me to overexert myself if I’m under stress or off my routine or diet. I can get fatigued and dizzy and feel brain fog, which can take sex out of the picture for days at a time.
Val: When we decided to try to have a baby, we were trying to have sex every day, regardless of whether or not it was a good day. We managed to do that, but it wasn’t always enjoyable. If his head wasn’t in a good place, he wouldn’t be as aroused as he usually is. I’d take it personally, even though it wasn’t personal at all. We’d get into arguments about it.
Generally, though, since Ménière’s came into our lives, we can’t just have sex whenever. The way his triggers work, there were suddenly times of the day where sex worked better than others. I gradually learned to tell, depending on what we’d done on a given day, whether sex would be an option or not. I started to plan around that a bit. If we want to have sex, we won’t go out for a meal with a lot of sodium in it that day, or we'll find time to be together earlier in the day.
Steven: We try to schedule and set aside time for sex sometimes, yeah. But there’s still always a chance I’m just not going to be feeling good. Val wanted to have sex this weekend. It’d probably been a week or two since we’d had sex. But a family member just got diagnosed with cancer and I’m dealing with pain from a shoulder injury, so my stress levels are through the roof. That’s activating my symptoms quite a bit, and I’m feeling worn down. When Saturday came around, she wanted to have sex, and I had to say that I wasn’t feeling it, but maybe I’d rally on Sunday. Then, on Sunday, I still wasn’t feeling into it.
Val: We have to be more verbal than other couples may feel like they need to be. In the early days of our relationship, I’d just hit him with my shoulder and, OK, it was on. But after a while with Ménière’s, I realized I had to tell him, “Hey, you can ask me if I’m in the mood. And if you’re in the mood, please tell me." We have to seize our opportunities when they’re there.
Steven: When I’m not feeling well, we find ways of being intimate that aren’t penetrative sex.
Val: We still kiss and touch.
Steven: Sometimes when I’m in a bad place, she’ll just say, “Lay down and let me give you a blowjob.” There’s something nice and caring in her offering that when I’m not feeling well.
Val: We’ve also experimented with using toys on me when sex isn’t on the table.
Steven: One thing we’ve done every day, for our entire relationship, is that no matter what’s happening or how we feel, for the last 10 to 15 minutes before we go to sleep, we lay in bed and cuddle and talk—not always in a sexual way, but we stay physically close and intimate.
Val: That’s so important. Having a moment when it’s just me and him, without the TV or the kid or anything else, is what glues us together through all the crap we’ve been through as a couple.
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