I often see people say “I can’t have Vestibular Migraine – I don’t get headaches”. In fact, those were the exact words I said to my ENT when I was originally diagnosed at the Mayo Clinic. But what is MAV or its updated term, vestibular migraine? What a lot of people fail to realize, myself included, is that there are many different types of migraine out there, and some of those can occur without any head pain at all. Vestibular migraine is one of the types that can occur with or without any pain.
Also known as MAV or Migraine Associated Vertigo, it is a debilitating form of migraine that can manifest itself through odd symptoms like dizziness, ataxia, and sensations of moving while sitting still. In fact, I can’t stand using the term “MAV” or “Migraine Associated Vertigo” because it implies that one must have vertigo to have vestibular migraine. The fact is that one can have vestibular migraine without having any head pain or vertigo. Because symptoms are not exact for every person, it also makes it incredibly easy to be misdiagnosed.
While Migraine Strong writes about the latest in migraine treatments, this is not medical advice. We are patient educators and all information you read should be discussed with your doctor.
The Many Symptoms of Vestibular Migraine
Some of the symptoms of vestibular migraine are:
- Dizziness
- Lightheadedness
- A feeling of floating, walking on clouds, or being on a boat
- Derealization or feeling detached from the world around you
- Memory loss and brain fog
- Ataxia (impaired balance)
- Positional and/or spontaneous vertigo episodes
- Light and motion sensitivity
- Tinnitus (ringing or buzzing in the ears)
- Nausea and vomiting
- Trouble focusing and visual disturbances
- Hyperacusis (sensitivity to sound)
- Ear pressure fluctuations that might include muffled hearing
- Anxiety/Panic
There are also two types of vertigo – central and peripheral. Peripheral is typically associated with short bursts of rotational spinning that are common with Meniere’s, BPPV, and Labyrinthitis. These other vestibular disorders are due to a problem with your inner ear and cause vertigo outside the brain.
Central vertigo is caused inside the brain and can last much longer or be continuous. This is the type associated with migraine, hence the term MAV. It is important to remember that vertigo is a symptom, and not a diagnosis.
After this blog was published, the Migraine Strong team published a more in-depth article about the symptoms of vestibular migraine.
How is Vestibular Migraine Diagnosed?
Since many of the symptoms we see above mimic other vestibular disorders, the diagnostic process for VM is based on exclusion of the other disorders. Vestibular migraine cannot simply be diagnosed in patients who are dizzy and also have a history of migraine headaches. A diagnosis requires the patient to have reoccurring vestibular symptoms along with common migraine features (headache, light and sound sensitivity, and visual auras).
During an exam, a patient may be normal between attacks but most show different types of nystagmus, ocular dysmetria (trouble focusing your eyes), and slow saccades (abnormally slow eye movements).
Hearing tests exclude potential Meniere’s diagnoses, which are associated with hearing loss, especially in low frequencies.
Electronystagmography (an ENG test) – small electrodes are placed on the skin by the eyes to record movements in response to tests.
Videonystagmography (VNG test) – a video camera inside goggles records the eye movements in response to tests.
Both ENG and VNG tests track your eye movements during changes in head position for a positional test, in response to warm or cool water or air being pumped into the ear canal for a caloric test, and during rapid eye movements for a calibration test. The caloric test is notably the worst to go through as it increases symptoms, but can present if there is a weakness in either you left or right inner ear.
Rotary Chair Test – this is performed in some locations, although it’s not always needed. This chair moves around to encourage responses that are on the same speed one would encounter in everyday life. It can be useful to determine if vestibular loss is occurring in both ears.
Computerized Dynamic Posturography and Sensory Organization Tests basically strap you into a harness in a small area with a picture in front of you, and then track how much you sway under different conditions. You are often tested with your eyes open, then closed. The platform can either be still or move with how you sway. This test can show how well one adapts to unexpected movements and is beneficial in conjunction with other vestibular tests. Vestibular therapists might use this test to determine if VRT is beneficial for a patient.
VEMP – This test is performed to show if the saccule and the vestibular nerve are working properly. Small electrodes are applied to the neck and they measure the sternocleidomastoid muscle, which can show if the saccule is sensitive to sound (as it should be). Those with vestibular loss will have a low or non-existent response to noises played. This can be due to ototoxicity, Meniere’s, SCCDS, or vestibular neuritis.
With vestibular migraine, you should show normal results with these tests UNLESS you have vestibular migraine that’s been triggered by another vestibular disorder, which is not uncommon. See how difficult this is?
What are the next steps with a MAV diagnosis?
As you can see, there are many layers to vestibular disorders and getting an accurate diagnosis can be incredibly challenging. Most clinicians don’t have the tools or technology available to accurately diagnose a patient in one sitting. Keeping a detailed journal of your symptoms, accurate family history, and noting any motion sickness as a child or an adult can help you doctor navigate through your symptoms.
Resources like VEDA, can be beneficial, but if you’re looking for a doctor who is an expert, you really want to speak with the office to make sure your physician is familiar with vestibular migraine. There is a lot of inaccurate and false information online since it’s such a new diagnosis. A good physician will be up to date with the latest treatments, and will work with you on a plan that you’re comfortable with.
Aside from your finding a good doctor skilled is MAV, it’s often helpful to learn from others. Jennifer Bragdon is a writer for Migraine Strong. Some of her most popular blogs are on MAV / vestibular migraine and how she has worked on her diet, natural supplements and her overall treatment plan. Her path and progress are inspiring.
Great article. Full of great information presented in a easy to understand way. I forwarded to my husband just for grins. This explains it much better than I can.
Thank you, Nancy! Glad it was so helpful!
Help! VM is driving me insane, how did you get better? Did you ever take drugs? If yes, what?
Hi William,
It took me some time but with diet, exercise, the right meds, and supplements I definitely got better. Be sure to check out some of the posts on VM here – like my story and Jennifer’s. I talk about what meds and supplements I take here.
Hi,
Thank you for this info, I was diagnosed in 2015 w BPPV , which turned out to be an inoperable Acoustic Neroma, I’ve had crippling headaches, vision fuzziness, balance issues. The radiation dr said, this tumour doesn’t cause headaches, then sent me home to die basically. However I started my own treatment, & my tumor is really tiny now. It’s saving lives but the stigma is an issue, my balance has improved immensely on good days I can walk down the stairs w/o holding a hand rail!.
Glad you’re doing better, Wanda!
Thank you!
What about double vision, with or without a type of dizziness that is hard for me to describe…it’s as though things are tilting to one side, followed by intense motion that feels like it’s inside the head, possibly rotary, and sort of sideways. Wondering if this could be vestibular migraine. The spinning/sideways rotary component can be absent, or present for a short time (10 or so seconds) or for about 24 hours or so. My double vision once lasted for five months. Sometimes it lasts for about ten or so seconds. No apparent triggers except for standing on a slanted surface, or too much reading or computer time. Thanks in advance.
Hi Randy,
Sorry it took me a while to see your message. It definitely sounds like you are experiencing vertigo with the intense motion you describe. But vestibular migraine/vertigo can mimic many other vestibular disorders. Short episodes typically point to BPPV or Meniere’s, but a good doctor will be able to help point you in a better direction. A few questions for you –
Have you completed any of the testing mentioned above?
Have you seen an otoneurologist?
I wrote a comment regarding the above article the other day and I subscribed to this blog. However, I do not see my comment. It took me a long time to write it and I was hoping to get at least one response. Where did my comment go? Anybody know? Thanks.
Never mind – I see that my original comment is awaiting moderation.
I hope it gets published, as I am looking for answers and not getting them anywhere else. Thank you again!
Randy
I would like to know if anyone has tried neuromodulators to decrease headache frequency while suffering with vestibular migraine?
Hi Brenda, I do not have head pain with my VM so I have never personally tried it. If you do, please let us know how it goes.
I have all these symptoms daily for years except vomiting. 10 years ago ENT did the tests but never gave me a name for what I had. Just said it was incurable, progressive and suggested tai chi. Just heard of Vestibular migraine and MAV diet today…
Hi Alicia, I am new at this. I have many of this symptoms, but the most distressing symptom for me is the derealization. I am in my second week now and still feeling the same. My neurologist thinks It could be migraine and the ortholaryngologist says everything is ok. Did you experience this symptom? How long did your symptoms lasted the most? Thank you
Hi Mar,
Yes I did experience that symptom. It’s very common with vestibular migraine! In fact I wrote an article with one VM doctor who says this is one of the most common symptoms he sees in patients.
My symptoms lasted for about 2 years after I was diagnosed and got treatment, but they gradually got better with time. They were only really horrible before I saw a doctor that understood VM and we started a treatment plan. I used the treatment pie which is discussed here as well as the Heal Your Headache diet.
I appreciate your including the symptom of the eyes inability to focus. I found that to be a sign I was getting an onset of a migraine aura. Then came the vestibular imbalance and floating falling feelings.
It’s been hard to explain to the doctors I get what felt like a squeezing or a pinching together in my eyes or that they would become unfocused or it felt like my eye muscle was involuntary being pulled to one direction! At least it was a warning of such and I would tell my husband an “episode” was going to happen.
I am now, after, 18 months, with a neurologist for 8 months now on meds and only just now increased dose. But have my life back, mostly.
Thank you for writing, Karen. I’m glad you are getting better and found someone to help you. It usually takes way too long to get the proper diagnosis and treatment. -Danielle
Thank you for your article, I have been suffering all of these symptoms except nausea. Since April 2020 I have been dealing with this some days are better than others and my doctor keeps telling me it’s allergies or my anxiety! So frustrating. When you said you had this chronic vm for years or months is that a daily thing or just reoccurring? Thank you.
It is so frustrating to be told that! Thank you for writing and I’m sorry you have have been having such a tough time. Anxiety is certainly part of vestibular disorders. It makes sense that our “fight or flight” mechanism kicks in when things in our brain aren’t working properly. I encourage you to seek help from a doctor that has more experience with vestibular disorders like a neurotologist. This may also help you cope with the anxiety that most of us feel. https://www.migrainestrong.com/migraine-anxiety-tips-to-stop-feeling-anxious/ – Danielle
I have a VS, left. Scheduled for surgery in a few weeks. Interested to know how you reduced the size of your tumor. Any help is appreciated!