Vestibular Migraine: More Than a Headache

There are quite a few books available for migraine, but they rarely mention vestibular migraine. The ones that do refer to it don’t go into much detail. This could be because it’s only been recognized as a diagnosis in the past ten years, and many doctors are still not aware that it exists. Often, they are more familiar with other vestibular disorders like Meniere’s disease or BPPV, which have similar symptoms. Many doctors who are not familiar with vestibular disorders often overlook small factors that separate one diagnosis from another. Despite its prevalence, accounting for roughly 10 percent of migraine patients (likely higher in reality due to misdiagnosis), a diagnosis of VM is based on the exclusion of other causes of dizziness. This disorder has impacted my life so much, and I feel it’s important to include a primer in this book about what I’ve learned regarding symptoms and treatments, in order to help others on their journey.

VESTIBULAR MIGRAINE SYMPTOMS

Many people, like myself prior to my diagnosis, think of migraine as horrible head pain, sensitivity to light, and nausea, among other symptoms. What people don’t realize is that it’s possible to have vestibular migraine without any head pain. Less than half of patients actually experience a link between vertigo and headache. With vestibular migraine, while head pain is still possible, the most common symptoms involve dissociation, visual disturbances, lightheadedness, ataxia (impaired coordination), giddiness, a floaty feeling, or rotational spinning (vertigo). Some refer to vestibular migraine as “MAV” or “Migraine Associated Vertigo,” but I believe this is a confusing term because some patients with vestibular migraine never actually experience a vertigo attack. In most physicians’ minds, vertigo strictly references a rotational spinning sensation that usually leads to vomiting.

Other symptoms involve light sensitivity, tinnitus (ear ringing), head pressure, disequilibrium, and visual distortions. Some days I felt like I was on a boat that was rocking side to side or up and down. Restaurants were so difficult because all my senses were heightened. A flickering candle, loud music, or a boisterous conversation would make my head feel super fuzzy, as if I couldn’t focus on any one thing. The brain fog was so terrible, I had a tough time recalling my best friends’ names or basic objects in a conversation. Previously I had a quick wit, but with VM it was challenging to form a basic sentence.

It’s important to be able to describe your symptoms accurately so your doctor can give you the best diagnosis. I worked with Dr. Edward Cho from House Clinic in Los Angeles to define these terms in more detail so that patients can accurately describe their symptoms to their physicians. Being descriptive and precise in what you say will not only help your doctor formulate the correct diagnosis but can also help with your treatment plan. Here are some of the symptoms defined:

Vertigo–a feeling of motion when there is no motion. Most commonly associated with spinning, where you feel you are spinning, or your surroundings are spinning. Dr. Cho says physicians understand vertigo as primarily spinning to keep it distinguishable from other symptoms. Physicians will ask you to describe your type of vertigo and note if the episodes are continuous or if they are short bursts.

They will also want to know if the vertigo episode is positional (based on how you move) or if it happens spontaneously. These questions can help your physician narrow the type of vertigo. There are two types of vertigo: peripheral and central.

Peripheral Vertigo–associated with short bursts of rotational spinning. Nystagmus—involuntary, rapid eye movements—can be horizontal or rotational, and the presence of vertigo when you wake up in the morning suggests peripheral vertigo. It is common with other vestibular disorders like Meniere’s, BPPV, and Labyrinthitis or Vestibular Neuronitis. These disorders cause vertigo “outside the brain,” usually originating from the inner ear.

Central Vertigo–originates from the brain and can last much longer than peripheral vertigo, from hours to days. It’s the type of vertigo typically associated with migraine.

Lightheadedness–a sensation just short of fainting (a physician may refer to this as near syncope or presyncope). Sometimes you can feel this from standing up quickly or along with heavy breathing. You may feel as if you’re about to pass out or can’t get enough air.

Disequilibrium–a sensation associated with being unstable on your feet. This is the feeling of walking on clouds or like the ground is moving up and down beneath you, perhaps like you’re on a boat. This may also fit a rocking, tilting, and/or swaying description.

Anxiety–associated with worry or fear of performing certain tasks. You may feel panicked or have quickness of breath.

Giddiness–probably the best description of what we think of when we use the word “dizziness.” It’s a reeling sensation, and you may feel like you’re about to fall.

Depersonalization–a disconnection from your body; feeling separated either from yourself or your surroundings, almost like you’re in a dream or trapped in a bubble. You might feel weightless, or like your head might “pop” off and float away.

Derealization–disconnection from the environment around you. You may feel like you’re looking at the world from behind a window or veil. Or there is an alteration of the world around you that seems unreal. The space and size of things around you may be altered. This is also called “Alice in Wonderland syndrome.” Dr. Cho mentions that derealization is one of the symptoms he sees often, but patients either don’t fully describe these symptoms to their doctors or don’t know how. Perhaps they believe they are “losing their minds” and don’t want others to think they’re going crazy. These symptoms are very common with migraine, vestibular disorders, and epilepsy.

Visual Dependence and Visual Motion–when your vision is not matching up with what is actually going on with the world around you, it can create dizziness. For instance, you may be parked in the car, but feel like you or the cars around you are moving when they’re not. With visual dependence, you may be putting more weight on your sight rather than leaning on other forms of balance—like the inner ear, feet, and spatial recognition. If scrolling on your smartphone or computer drives you nuts, or you cannot tolerate driving or being in grocery stores, you probably have this symptom. This can also be associated with PPPD.

Tinnitus–a ringing or buzzing in the ears. It can also manifest as hissing, chirping, or several other sounds—sporadic or continuous.

Ataxia–feeling “drunk” or having difficulty walking (gait abnormality). You might have slurred speech, stumble, or have a lack of coordination. It’s similar to disequilibrium.

Photophobia–light sensitivity. Sunlight, fluorescent light, and incandescent light can all trigger this issue. It may cause discomfort, increased symptoms, or the need to squint/close your eyes. You may want to wear sunglasses indoors.

Smell Sensitivity–certain scents, especially strong candles or lotions, can trigger an immediate reaction.

Motion Sickness or Sensitivity (Kinesiophobia)–the feeling of nausea or the increase in other symptoms from riding in cars, on a plane, or even scrolling through your smartphone.

Phonophobia–sensitivity to sound, where music, loud conversations, or other noises seem very harsh. Hyperacusis is an extreme form of phonophobia but is less common.

The process of exclusion for diagnosing vestibular migraine involves a hearing test to rule out hearing loss (common with Meniere’s), a family history (migraine is widely genetic), an MRI, caloric testing, and VNG/ENG tests that look for slow saccades (an abnormal speed of eye movement) and nystagmus (repetitive, uncontrollable eye movements). VM patients often find that their MRIs return with normal results but may show white spots that are different from the white matter lesions that show up for a multiple sclerosis patient. It is also possible for Meniere’s patients to have crossover with vestibular migraine, making both vestibular disorders even more difficult to diagnose.

VESTIBULAR THERAPY & DIET

Physicians sometimes recommend that patients who are incredibly sensitive to motion or certain stimuli try vestibular rehabilitation therapy, also known as VRT. This entails performing exercises that allow the brain to compensate for certain movements. The idea is that the brain will learn to accept these movements without triggering dizziness. In my case, I truly believe VRT helped once I wasn’t suffering from 24/7 symptoms. The key was to find a therapist who was knowledgeable about vestibular migraine. Previously I had gone to therapists who never mentioned a “baseline” and just pushed me through a grueling therapy session. A “baseline” is the level of dizziness you are at before you start any exercise. When being pushed to my limit, I always felt worse after and never really saw improvement. Once my symptoms were slightly more well controlled on medication, supplements, and the HYH diet, I saw a new vestibular therapist who explained to me that it’s important to always return to that “baseline” of when you started. Your symptoms should only be briefly elevated, for no more than an hour.

An interesting exercise that we tried was to prepare me for a trip to Las Vegas after being diagnosed. Vegas was one of the first places I visited after being diagnosed and it was probably the worst place for someone with a vestibular disorder. The flashing lights, loud noises, odd smells, and crazy carpets were all too much, and I spent the majority of the trip in the hotel room. When I discussed my anxiety about returning to the city with my therapist, she had me watch YouTube videos of people walking through Vegas casinos. There were levels I could work up to depending on how I felt. Easy would be considered a professional video that’s shot with a camera stabilizer. Difficult would be some drunk guy walking around filming with his iPhone while holding a beer and shouting at his kids. After watching these videos over several months, my second trip to Vegas was much more successful than my first.

As far as diet, many specialists, like Dr. Michael Teixido who was interviewed for the 2019 Migraine World Summit’s inaugural talk specifically about vestibular migraine, agree that a low-tyramine, additive-free migraine diet can have a positive effect on decreasing attacks and improving vestibular migraine. The most effective clinics are implementing a multimodal approach of treating any chronic illness to bring an increased chance of success to patients. These physicians recognize that personal treatment can vary, but combining a diet full of whole foods, various types of therapy, alternative remedies, exercise, and medication when needed is widely useful for migraine patients. Be sure to consult your trusted healthcare team and family to find the path that’s right for you.