What Does Vestibular Migraine Mean for Your Sex Life?
In December 2020, I was sitting on the couch when my world started spinning—not in a good way. Afterward, I spent months feeling as if I was sitting on a boat even when lying in bed or watching TV. In those months, I spent half my time bedridden, nauseous and panicking about whether I'd ever be able to do something as simple as going grocery shopping again. Normal activities, such as cooking, driving and having sex, were suddenly hard to impossible for me, depending on how I felt from day to day. All my energy went toward surviving and trying to find a doctor who could give me the answers I needed to get to the next step.
I was diagnosed with vestibular migraine in September 2021. While it felt validating to finally have a diagnosis, it offered limited help and hope for continuing to live my life. Sex barely featured in my mind. When I did have sex with my then-partner, I sometimes came out of it feeling better. Other times it triggered symptoms for the rest of the evening. Like many other aspects of life since my symptoms started, sex became a process of trial and error.
Not your typical migraine
People usually think of a migraine as an intense, debilitating headache, but that's only one version. As with migraine headaches, vestibular migraine affects everyone differently. It can feel as if you're constantly sitting on a boat or walking on a trampoline. Some people have derealization or the sense that they're not fully present in their body, as well as nausea and other vertigo symptoms.
The one element most of us have in common is that it can take a while to get a diagnosis. For me, it took nine months. For others, it's longer, even though up to 1 percent of people have vestibular migraine.
"One of the challenges for people who have balance disorders in general is they don't look sick," said Steven Rauch, director of the vestibular division and medical director at Massachusetts Eye and Ear in Boston. "They may feel really rotten, but it doesn't show, so generally in everyday life, they do not get validation from the people around them."
For a lot of people, symptoms start without warning, even if they've never experienced them before. Vestibular migraines can be triggered by the same factors that spark migraine headaches, including bright lights, strong smells, stress, anxiety and even certain foods. But they come with the caveat that, unlike classic migraines, they often occur without pain.
"My husband had only known me as a healthy individual previously and now he didn't understand what was going on in my head," said Alicia Wolf, a vestibular migraineur and founder of the Dizzy Cook, a website based in Texas that offers migraine diet recipes. "Nothing crazy had happened to me—I wasn't in a car accident or anything like that—so how did I go from being a perfectly healthy individual to having all this stuff?"
Vestibular migraine takes its toll on relationships when you can't have sex and can't fully engage with your partner. Many people learn how to manage their condition, but getting there can mean having a one-track mind and a struggle to reclaim your body.
When sex rocks the vestibular boat
Feeling like you're on a boat 24/7 makes your sex drive sink. You get frustrated and anxious, and you might even start to wonder if you'll ever enjoy sex again. Your partner's attitude impacts your sex life, too, for better or worse.
"If you have somebody who has a lot of empathy, that strengthens ties that lead to intimate activities, and if you have somebody who really doesn't get it and is impatient...that's really going to drive people apart," Rauch said.
Rauch explained that because many people with vestibular migraine have motion sickness, any bouncing, rocking, lighting or scents can make symptoms worse. Plus, nausea tanks your appetite for sex.
Bringing back a steady sex life
There's no vestibular migraine sex handbook. If you're in the thick of VM and wondering if you'll ever get your life back, it's not impossible, but may not be easy.
"I think once you start feeling like you get glimpses of yourself back, you feel more like the person you were before and that puts you in a safer space for intimacy," Wolf said.
She explained one of the most important parts of reclaiming your sex life with vestibular migraine is making sure you feel comfortable and safe. Whether you prefer low lighting, need support to prop you up and avoid positional triggers, or need to plan ahead for your date night, having sex with vestibular migraine involves a lot of experimentation. Above all, communication is vital.
"The patient is the only one who can really give a thumbs-up or thumbs-down to that kind of activity," Rauch said. "They're the ones who know what's making them feel better or making them feel worse. The partner has to be respectful of the patient. They're in charge."
Lastly, more than any position or mood-setting, Wolf and I agreed that perspective matters. Think of this as a time to connect with your partner or partners. You don't have to be symptom-free to enjoy sex again, you just need to listen to your body and explore what works for you.