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What does it mean to say you’re “dizzy”? Do you ever to struggle to find the right words to describe your vestibular migraine symptoms to your doctor? How do you know if you have migrainous vertigo?
This post, in collaboration with Dr. Edward Cho, who treats vestibular patients at Cedars Sinai, explains the most common symptoms and pairs them with the correctly defined terms for them.
Table of Contents
Defining Vestibular Symptoms
When it comes to getting the right diagnosis for vestibular migraine, your physician will need to know a lot of nitty gritty details of your symptoms. Unfortunately for anyone with a vestibular disorder, it’s common to walk into an appointment with your doctor and completely freeze up or go blank.
Our heads are foggy and it took a lot of effort just to come to the doctor’s office and sit under these fluorescent lights (why!?). I found myself in this same position, finding it difficult to describe my symptoms.
It also doesn’t help that many people misuse terms online. Eventually vertigo, dizziness, and lightheadedness can begin to all blur together in our mind. But to your doctor, it can be quite different.
Since “dizziness” is an incredibly ambiguous term, it’s helpful to be able to break down exactly what you’re feeling with your physician. In the end, dizziness is not the same as migrainous vertigo, lightheadedness, or disequilibrium.
Diagnostic Criteria
Formulated by the Committee for Classification of Vestibular Disorders of the Bárány Society and the Migraine Classification Subcommittee of the International Headache Society (IHS), this vestibular migraine diagnostic criteria has remained unchanged since 2012.
- At least 5 episodes of vestibular symptoms and one of the 3 migrainous features below.
- A current or past history of Migraine without aura or Migraine with aura.
- Vestibular symptoms of moderate or severe intensity, lasting between 5 minutes and 72 hours.
- At least half of all episodes have one of the 3 migrainous features.
- Headache with at least two of the following four characteristics.
– unilateral location
– pulsating quality
– moderate or severe intensity
– aggravation by routine physical activity - Photophobia or phonophobia (sensitivity to light and sound)
- Visual Aura
- Headache with at least two of the following four characteristics.
- Not better accounted for by another ICHD-3 diagnosis or by another vestibular disorder. This is where vestibular testing can be helpful in ruling out other vestibular disorders like Meniere’s Disease, vestibular neuritis, perilymph fistula, and BPPV.
Vestibular symptoms as defined by the Bárány Society include many types of vertigo, dizziness and nausea. They are rated “moderate” when they interfere with daily activities and “severe” when the activities cannot be continued.
Needing only ONE of the 3 migrainous features means that head pain or a “headache” is not the only factor to making a diagnosis. Therefore you can have vestibular migraine without headache as a symptom.
Also there is no test done specifically for vestibular migraine. This is what makes it so important to have a knowledgable doctor who can listen to your history and symptoms carefully. Knowing how to define your symptoms becomes critical to an accurate diagnosis.
You can find a reference for good doctors in my vestibular migraine guide. You can learn more here about diagnostic criteria of vestibular disorders.
Symptoms of Vestibular Migraine
Here are the most reported vestibular migraine symptoms, which also includes migraine associated vertigo (MAV).
Vertigo – a feeling of motion when there is no motion. Most commonly associated with spinning where either you are spinning or your surroundings are spinning. Dr. Cho says physicians see this as primarily spinning to keep it distinguishable from other symptoms.
You’ll want to describe your type of vertigo:
- Note if your episodes are continuous or if they are short bursts.
- Is your vertigo episode positional (based on how you move) or does it happen spontaneously?
The above questions can help your physician narrow your type of vertigo. There are two types of vertigo – peripheral and central.
- Peripheral – associated with short bursts of rotational spinning. Nystagmus can be horizontal or rotational, and the presence of having vertigo when you wake up in the morning suggests peripheral. It is common with other vestibular disorders like Meniere’s, BPPV, and Labyrinthitis or Vestibular Neuronitis. These disorders cause vertigo “outside your brain”, usually coming from the inner ear.
- Central vertigo – this type can last much longer, from hours to days, or be continuous and originates from the brain. It’s typically associated with migraine, or migrainous vertigo.
It’s important to note here that the term “vertigo” does not mean the same thing as dizziness, lightheadedness, brain fog, fatigue, etc. It is a very distinguishable symptom.
- Lightheadedness – Your physician may refer to this as near or presyncope, it’s a sensation just short of fainting. Sometimes you can feel this from standing up quickly or with heavy breathing. You may feel as if you’re about to pass out or can’t get enough air.
- Disequilibrium – Associated with being unstable on your feet. This will be 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 the rocking, tilting and/or swaying description.
- Anxiety – dizziness associated with worry or fear of performing certain tasks. You may feel panicked or have a quickness of breath.
- Giddiness – Probably the best description of what we think of when we use the word “dizziness”, this is a reeling sensation and you may feel like you’re about to fall.
Derealization and Depersonalization
Dissociative symptoms include a number of symptoms like Depersonalization and Derealization
- Migraine Depersonalization – disconnection from your body. Feeling separated either from yourself or your surroundings, almost like you’re in a dream or trapped in a bubble. Feeling light, like either you are weightless or that your head might “pop” off and float away.
- Migraine Derealization – disconnection from the environment around you. Feeling like you’re looking at the world from behind a window or veil. An alteration of the world around you that seems unreal. The space and size of things around you may be altered.
Dr. Cho recommends this article on migraine derealization and dissociative symptoms since this symptom is so common.
The article linked above mentions that patients often don’t fully describe these vestibular migraine symptoms to their doctors, or don’t know how. Perhaps they think they are “losing their minds” and don’t want others to think they’re going crazy. But rest assured you are not 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 your other forms of balance, like the inner ear, feet, and spatial recognition. If scrolling on your phone or computer drives you nuts, or you cannot tolerate driving or grocery stores – this is definitely a symptom for you.
Sound and Scent Sensitivity
- Tinnitus – this is a ringing or buzzing in your ears. Can also be hissing, chirping, or a number of other sounds, sporadic or continuous.
- Ataxia – similar to disequilibrium, ataxia is where you feel “drunk” and have difficulty walking (gait abnormality). You might have slurred speech, stumble, or have a lack of coordination.
- Photophobia – this is 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 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 increased symptoms from riding in cars, on a plane, or even scrolling through your phone. In fact a history of motion sickness as a child can be common thread in vestibular migraine patients.
- Phonophobia – a sensitivity to sound, where loud conversations, music, or other noises seem very harsh. Hyperacusis can be a very strong sensitivity, but is less common.
Additional symptoms can include brain fog, memory impairment, fatigue, ear pressure or popping, neck pain, numbness, rocking or dropping sensations, vomiting and nausea. But all of those are fairly straightforward for patients to understand.
Dr. Edward Cho on Vestibular Migraine Diagnosis
I consulted with Dr. Edward Cho at Cedars Sinai, who was kind enough to answer a few questions on what patients can do to help their doctors distinguish their vestibular migraine symptoms. By knowing how to accurately describe your symptoms, you can get the most out of your appointment.
What can patients do to maximize the limited time they have with their doctors? What kind of information is most important to you so we can convey that quickly or have it ready?
Dr. Cho: I find my quickest visits come with patients who have a concise timeline of their vestibular migraine symptoms. History is the most important part of the diagnosis of vestibular migraine, much more important than any testing or even physical exam. Also, listing tests done such as audiogram, VNG, and MRI of the brain along with the printout of the results and any DVD’s of images are helpful.
Finally, the most important aspect of the history is the quality of the dizziness. Is it spinning vertigo? Are you rocking, like on a ship? Do you have lightheadedness? What are provoking factors and triggers? What makes vestibular migraine symptoms better?
Are you seeing more patients with Vestibular Migraine symptoms now than in the past?
Dr. Cho: This is a difficult question to answer. Vestibular migraine may appear to be more prevalent because more doctors are identifying cases that were under-diagnosed in the past. It is the most common type of dizziness after bppv. However, the prevalence of vestibular migraine and migraine headache may be actually increasing as well because of changes in our food supply (more GMO and processed foods), more screen time with smart phones and computers, and increased stressors in our society with more isolation of people.
Also, no one knows the long term effects of cell phone and wifi radiation, but I’m sure those must have some neurologic effects.
Why do you think VM is often misdiagnosed?
Vestibular migraine is often misdiagnosed because there is not enough education in the medical community about vestibular migraine and dizziness in general. Also, many doctors may not like to see patients with dizziness in general because of their limited exposure and education in this topic.
How can patients help themselves outside of the appointments with their doctor?
Dr. Cho: Patients can do reading on vestibular migraine on very good website such as Dr. Timothy Hain’s website. They can also start natural treatments by reading Heal Your Headache and using resources like The Dizzy Cook.
A huge thank you to Dr. Cho for his time medically reviewing this article.
Vestibular Migraine Posts
For more information, check out these articles on vestibular migraine.
This post was updated June 7, 2022 with a link to our discussion on diagnostic criteria or vestibular migraine. This post and graphic are copyrighted by law. Please do not plagiarize or re-post the graphic without credit to The Dizzy Cook and a website link, or explicit permission.
This seems to hit all my symptoms. I saw a neurologist and he said I have chronic migraines. I should be starting botox soon, what else do you think help with this?
Hi Alicia,
Just wanted to say thank you for this post. I’ve been living with symptoms of vestibular migraine for nine or ten years, but they only got bad enough for me to see a neurologist and receive a diagnosis quite recently.
The blue “Symptoms Defined” diagram in this post is about the most accurate and easy-to-understand description I have found of my symptoms (save for ataxia and anxiety, I don’t seem to suffer from those particularly, touch wood!).
Whenever people ask me what vestibular migraine feels like, it is your diagram that I refer them to.
So thank you for making something quite difficult to explain, a lot easier to understand.
Thank you so much, Ken. I’ve worked really hard at this and it’s great to have this kind of feedback. Means a lot.
Thanks for this article. I have have had issues off and on with disequilibrium and sometimes vertigo since my 20s, but didn’t realize until recently that it is probably mostly migraine related. After a period of very frequent, severe migraines were quite well controlled by one of the anti-CGRP injections and a common anti-seizure medication used to prevent migraines, I began having months of disequilibrium and severe fatigue. I’d have periods of relief, but it was disabling and unpredictable. It was the ENT who evaluated me for Meniere’s who directed me to the diet and your website. I’m so glad this resource was here, both practically and emotionally!