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.
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.
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 defined 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.
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!
Cindy McCloud says
I am so thankful that the ENT I met with last week referred me to your book. I bought it and started reading it right away. I started having VM symptoms in January, 2022. It has continued since then. Having never heard of VM, I struggled to know where to look for answers with my symptoms. I eventually ended up in the ER in late February and they referred me to a Hearing and Balance office. I delayed going as I tried another course first that did not work. In March I went the the Hearing and Balance office and the Audiologist did extensive testing. My ears were fine so she set me up with the Physical Therapist in their office that works with VM. The therapies were very helpful but I stalled out in my and she then wanted me to see an ENT that works in this area. I feel I am now on the right track to continuing to improve. I have the FL-41 lenses to clip onto my glasses. I am taking magnesium and B2 also. I feel better every day. You have been a godsend for me. While your symptoms were more severe, you gave me answers I had not gotten before and I realize now that I was in a 24/7 continuous cycle from January until the first of April. I know now that I am not going crazy! Thank you so much for all you have done to educate others about VM and steps to take.
Michael K says
Thanks so much for all of these articles that provide hope to so many. I noticed ear fullness was not brought up as a possible symptom of VM. I was diagnosed with VM last month by my ENT and the fullness is one of my main (and most debilitating) symptoms. Do you have that as well and any advice to combat it?
Yes and I was told by doc to try "Claritin D” behind the pharmacy counter. Store brand okay too 24 hr. You can only buy 30 qty per month but use less cuz they dry you up but Help especially during rainstorms
I can't begin to tell you how much of a comfort your website has been. I've just been through the worst 5 months of my life and have finally been diagnosed with chronic vestibular migraine after having all the classic misdiagnosis' of anxiety, BPPV etc. I'm finding it all completely overwhelming and scary but it's a relief to know I'm not alone and can't wait to try some of your recipes!
I'm so happy to hear that, Emily! You're definitely not alone!!
carmen mosley says
Alicia you have opened up a door of healing!!! I am in tears because I have dealt with this for soooo long and just recently went through a week of anxiety abs sadness because of the dizziness headache and visual issues.
You have given my pain a name and I am going to find relief..
Thank you thank you thank you!!! I will continue to read, speak to my neurologist and heal myself through the knowledge and research that you are sharing.
Melissa Greene says
Thank you so much for this post! I feel like I am not alone and that someone else feels these crazy things too! Is there a post or information on employment matches for folks who suffer with this?
This is probably THE best write-up I’ve read. For me, at least, you hit the nail on the head.
Thank you so much for sharing your story and providing detailed symptoms. I've always suffered from motion sickness whenever I'm on any vehicle (car, air plane, boat, etc.) but since last October I've had a couple of episodes of severe motion sickness coupled with typical migraine-like visual aura (but no headache at all). I saw an otolaryngologist today and he thinks I have vestibular migraine. I'm still not quite sure what that means since my symptoms are more like "carsick": I never feel like "spinning" when I had an episode. Have you seen a case that my symptom can be a sign of vestibular migraine (or MAV)?
In any event, the otolaryngologist recommended following HYH diet for the next three months, and I was immediately devastated since food is the essential part of joy in my daily life. Coming across your blog is like heaven! I already ordered your cook book from Amazon, and now I'm less scared and less discouraged. Thank you so much!
Hi. Carolyn again with a current update. I had surgery 2 weeks ago to remove 12 year old (did not replace) breast implants. Feel mentally better as I didn't know what they might have been doing to me As it turned out they had large quantities of scar tissue and crystallizations. Luckily all were benign. Hoped for some reason they were responsible for some of my symptoms. They weren't. However I have rebounded horribly. I feel as if I'm right back where I started from. Still eating completely clean and taking my supplements. I did however take myself off of the Lemon Bioflavinoids as my head was feeling worse. I think the citrus or whatever it is made of was not good for me. I head fig is clearing again but mt tinnitus is off the chart which then has all of it's associated symptoms running rampide. I do have a couple of questions. Will it take about another 4 months to get back to where I was. I do have to go out for follow up appointments which still have an affect on me? Are Cogni Mag and Cogni Factor different enough to take both. I had never taken Cogni Factor as I forgot about it when I started Lemon Flavonoids. Thank you again for all of your assistance and look forward to you replies. Also hope Dr Buchholtz is still planning his vertual seminar.. Carolyn
Diane Friend says
Thanks for the great info. My struggle with vertigo started 3 1/2 years ago. Never did get a diagnosis after numerous tests. And now have no health insurance so not even trying to find any answers. Thanks to the good Lord, I am much better but still have struggles. Your articles helps put the struggles in the proper words. It's so hard to explain to those who have never experienced vertigo. Do you have any printer friendly version of your articles and / or charts? Thanks again for the great information.
Hey Diane, I'm glad you find them so helpful! I unfortunately do not know how to format the articles for that...I imagine you can just print the webpage? You can also get all the charts on pinterest.
Thanks for getting back to me about some addition natural meds I can add. Getting to sleep has lately become a new symptom. I take a .5 mg dose of clonozapam at bedtime but not doing much. Started taking 18 years ago when diagnosed with breast cancer and have gone from two .5's to just the one. What amount of Melatonin can I safely add and should I move clonozapam to morn or just take one after dinner and then one at bedtime. Will increase my magnesium and add Lemon Bio-flavonoids. Also thinking of adding Cognitive Factors for ginko and Vinpocetine. Is all of this safe at once? Am accomplishing more every day which is cool but still staying inside. In my 4th month. Having a connection like you has made me feel more sane and not alone in all of this. I do wish it could just go away though. Thanks so much again for all of your assistance. Carolyn
Thank you, thank you for posting this. I’m currently in the “my doctor thinks it’s anxiety and all in my head” boat and it’s so frustrating. I know that I’m terrible at explaining what happens but I feel like this article will help me choose words to explain things more concisely!
So sorry about that. I do hope you find one that will understand this is a very real illness. I went through that too and it's the best feeling to have it validated. I'm glad you can take this in with you to your future appointments!
Tammie Lynne Smith says
Well written and very informative article. Learning how to be your own best advocate starts with learning how to articulate your symptoms to your medical team. Learning to use these terms and be specific about our symptoms, discomforts, and problems also educates our families and friends giving them the opportunity to better participate and help us when we need it. Will be referring many to this blog. Thank you!
Thank you, Tammie. I completely agree. Even though I write about vestibular migraine, I had a different opinion on what some symptoms meant than Dr Cho. It was so helpful to see how he hears things as a physician, and get more insight into what they think. It took a lot of work between the both of us to make sure we were on the same page so I'm happy you find it helpful.
Mark McDermott says
Nice detailed article. Lots of technical terms, but the chart of symptoms at the end is very helpful. This is great information to help one get a handle on the specific symptoms so they can get detailed with their doctor. Very well done.
R.Anthony Steele says
Thx for this. I may link it in my Meniere's article which get shared widely. I'm always running into people who respond with the dismissive "oh, I get dizzy too" type comments. Or the kinds of people who want to know the difference. Useful article.
Thank you! I'm glad it was helpful.