Migraine is commonly thought of as a terrible headache, but it’s so much more than that. Migraine is a common and complex neurological disorder. So complex that it can present in lesser known variations that can actually occur without any head pain at all. These variations are called migraine variants. Vestibular migraine is just one of those migraine variants. Let’s spend some time on the common symptoms of migraine as well as some of the less common signs.
The “official” symptoms of vestibular migraine need improvement
Vestibular migraine can occur with or without head pain. That means some people with vestibular migraine will get head pain and others won’t. At disease onset there is often no pain at all, however, it’s not uncommon for symptoms to change over time. Vestibular migraine may progress to attacks that include head pain. Because vestibular migraine often occurs without primary head pain (especially at onset), getting to the right diagnosis can be a difficult process.
** 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 diagnostic criteria for vestibular migraine according to the International Headache Society
- At least five episodes of vestibular symptoms of moderate or severe intensity lasting five minutes to 72 hours. (This is not the experience I personally had or the experience of many in vestibular migraine support groups. At disease onset it is not uncommon for symptoms to be unending. Symptoms usually progress to episodes once treatment is in place.)
- Current or previous history of migraine attacks. (In my opinion, history of motion “car sickness” should also be added here).
- One or more of the following features with at least 50% of vestibular episodes:
- Headache with at least two of the following characteristics…one sided, pulsating quality, Moderate or severe pain intensity & aggravation by routine physical activity.
- Photophobia (light sensitivity) or phonophobia (sound sensitivity)
- Visual aura (Sensitivity to movement should be added here).
- Not better accounted for by another vestibular diagnosis.
#AD
Why is textbook criteria important?
Textbook definitions of vestibular migraine don’t typically cover continuous non-stop dizzy symptoms. Yet, I’ve talked with enough people diagnosed with vestibular migraine over the years moderating the Facebook group Migraine Strong, I feel confident in anecdotally stating that it seems to be very common. Nearly every person I’ve chatted with reports periods of continuous baseline dizziness (especially at disease onset) with no breaks. This is much different than how we think of migraine attacks with periods of breaks in between. It is also very common for no headache to be present at all.
Make no mistake that we are not simply complaining about diagnostic criteria here. We are attempting to advocate for the removal of barriers preventing those with vestibular migraine from receiving a quick & accurate diagnosis. Vestibular migraine diagnostic criteria is important as it leads to receiving quality medical care. The textbook diagnostic criteria for vestibular migraine desperately needs to change to reflect how those diagnosed experience it to reduce stigma and to reduce treatment and diagnosis delays.
The murky waters of diagnosis
Along with faulty diagnostic criteria, another reasons it’s tough to receive a swift diagnosis is because the symptoms of vestibular migraine mimic symptoms of other vestibular disorders such as vestibular neuritis, Meniere’s Disease and Benign Paroxysmal Positional Vertigo, to name a few.
Are there tests to help determine vestibular migraine?
There are tests that can help lead to diagnosis, but it’s truly a diagnosis of exclusion, meaning doctors will rule out other conditions to reach diagnosis. There really are no definitive tests to confirm vestibular migraine. Diagnosis happens through good doctors asking helpful questions about medical history and the onset of vestibular migraine symptoms and signs. But, with similar symptoms to other vestibular disorders, the diagnosis waters are murky for even the most experienced doctors to wade through.
To make things even more complicated vestibular migraine can also be comorbid with Meniere’s disease and benign proximal vertigo meaning you might actually have both. One pointed difference is hearing loss. While those with vestibular migraine can experience fluctuating hearing loss especially alongside fluctuating ear pressure, lasting hearing loss is uncommon. If significant & lasting hearing loss is present, consider an evaluation for Meniere’s disease.
Vestibular migraine & car sickness
According to experts at Johns Hopkins Headache Center, there is almost always a history of movement sensitivity like car sickness since childhood in those with vestibular migraine pointing to the movement, hyper-responsive migraine brain.
Vestibular migraine is more common in women than in men and it tends to run in families. These are generalizations though and not true for everyone. I am the only known person in my family with vestibular migraine. Vestibular migraine symptoms tend to worsen around menstruation cycles and when exposed to personal triggers such as alcohol, disturbed sleep, increased periods of stress and more.
The vestibular system simplified
Symptoms of vestibular migraine are incredibly prolific. Let’s talk about why. The vestibular system is made up of four parts:
- Vision- What we see.
- Proprioception- What we feel.
- Vestibular- Our inner ear.
- Brain- Interprets communication from all three parts to tell us where we are in space.
Most of us with migraine understand that we have strange symptoms in our heads like allodynia and in our ears like tinnitus. But, when something goes haywire with the vestibular system we may have symptoms in any or all of the areas that make up our vestibular system. This can be very scary.
Many become frightened when experiencing symptoms with our eyes like difficultly tracking objects or Alice in Wonderland Syndrome where you feel like you’re standing just behind yourself. Some experience muscle twitching or numbness in their limbs as well. Because the vestibular system is complex, it’s common for us to experience complicated symptoms. Knowing that helps to reduce the fear.
Symptoms of vestibular migraine
Let’s break down some of the symptoms of vestibular migraine. You may only have some of the symptoms on this list and not all of them.
- Allodynia- Painful spots around your head and face that feel like bruising even though there is no bruise present.
- Alice in Wonderland Syndrome- A feeling like you’re floating or standing just outside of yourself.
- Anxiety
- Aphasia- Difficulty expressing or understanding speech.
- Ataxia- Balance and coordination problems.
- Blurry vision
- Brain Fog
- Depersonalization or Derealization- especially in busy environments like grocery stores.
- Difficulty turning or tipping head
- Difficulty visually tracking objects
- Dizziness
- Ear popping and crackling
- Fatigue
- Fluctuating ear pressure
- Fullness in the ears
- Head pain
- Imbalance or disequilibrium
- Nausea
- Neck pain
- Numbness, tingling or twitching sensations
- Rocking, dropping, tilting or floating sensations
- Sensitivity to fragrance
- Sensitivity to light
- Sensitivity to movement- This includes movement we see and the movement of our own bodies.
- Sensitivity to sound
- Tinnitus
- Vertigo
- Vomiting
How to treat vestibular migraine
Vestibular migraine can be managed by implementing a multi-strategy treatment plan with the help of your knowledgeable doctor. Typical treatments might include:
- A variety of abortive migraine medications
- Vestibular suppressants
- Anti-nausea medication
- Vestibular Rehabilitation Therapy
- Supplements
- Diet
If you suspect you or someone you love is experiencing vestibular migraine we recommend contacting a neurologist, neurotologist or headache specialist in your area. If you don’t have access to one consider contacting the online neurology clinic Neurahealth who is not only well versed in migraine, but vestibular migraine as well.
My personal experience with vestibular migraine symptoms came on suddenly in April of 2016. Since getting my life back after being housebound for many months with constant and unending dizzy symptoms, I have been passionate about helping others find the helpful resources they need. In 2016, there were very few resources to find on the internet. Thankfully today so much has changed.
With that in mind, here are some of my favorite blogs to share with those who are looking for more information on vestibular migraine.
My personal story of diagnosis and gradual recovery
My vestibular migraine treatment plan
Thank you x100 for this post!!! I feel seen, heard, and justified in how I’ve felt for so many years!! This is such an exciting time for research on this condition and I’m so thankful people like you are bringing this to light!
This post is everything I’m feeling and going through right now. Honestly, I’m not even sure how I found this article, but I am so thankful I did. I didn’t think anyone else is/was going through what I am and I now have alittle hope knowing that someone pulled through and is living life to the fullest. Thank you for your research and sharing your story.
Hi. Thank you so much for taking the time to write. It’s so nice to find support for this rotten condition.
Your article is well written and helps me to feel like I’m not alone. My condition is suspected to be VM, and the symptoms fit, but tinnitus is a main feature for me. I’ve just had an MRI that was normal but I’m so worried about everything that suddenly started happening to me. Did anyone else out there have onset around menopause? I’m also wondering if anyone else had a difficult menarche. I did, and I’m wondering if hormones are playing arole at both ends of my life.
My doctor did say that hormones definitely play a role. My onset was during peri-menopause (age 46). -Jenn
Thank goodness I’ve read this it explains VM and tinnitus perfectly