Personally, I too suffer from Vestibular Migraines as well. Mine started soon after I was diagnosed with Meniere’s. They increased dramatically after my Vestibular Nerve Section (VNS). I found out by trial and error that purple tinted sunglasses decreased the attacks. They worked really well in big stores with their fluorescent lightings causing most of my problems. Also I used them while on the computer.
Now they have somewhat decreased, except when major low pressure storm front moves in the area. I tend NOT to have a headache, but visual disturbances; flashing stars or zigzagging “C-shaped” area which makes it very difficult to see. They last anywhere between 20-45 minutes. When it does occur, I go to bed and rest. I will be sharing more information on Vestibular Migraines in my upcoming posts. -Daniel Pancy
Recent research suggests that between 1-3% of people suffer from vestibular migraine, an estimated 50% of which are currently undiagnosed or untreated (Stolte 2015, Lempert 2009, Cherchi 2011). Despite its prevalence, vestibular migraine is notoriously difficult to diagnose; there is no test to determine whether or not someone suffers from a migraine disorder. Instead, there are a number of statements that can apply to a patient who is a candidate for the vestibular migraine diagnosis.
Below, you’ll find 6 simple statements that can provide insight into whether or not vestibular migraine could be an accurate diagnosis. These statements come from a mixture of both Lempert et al. (2012) and Furman et al. (2003) which provide insight into the diagnosis of vestibular migraine, plus extensive research I have done in reading the scientific literature on the epidemiology, presence, and diagnosis, and treatment of vestibular migraine, plus observations from my own experiences with this condition.
It is important to note that the purpose of this article is to raise awareness about the criteria for diagnosing vestibular migraine, and does not provide diagnosis or treatment.
1. You have a personal or family history of migraine.
Do you, or does anyone in your family, have a history of migraine headache or other migraine disorders? This could be anyone in your close family– think siblings, parents, aunts, uncles, grandparents. For example, while I was never diagnosed with migraine, four of my maternal relatives have a history of severe migraine headaches. This raises a red flag in favor of vestibular migraine, as there is a strong genetic component to migraine (Martin 2001, Gardner 2006). So, if you, or your family members, have a history of migraine headaches, your risk for developing vestibular migraine is increased.
It’s important to note that the phrase ‘or family history of migraine’ is something I added. Papers that define the diagnostic criteria for vestibular migraine, like Lempert et al. (2012) and Furman et al. (2003), state that the patient themselves must have a current or past history of migraine. I wholeheartedly disagree with this statement; this mindset is what prevented me from being diagnosed with vestibular migraine despite being symptomatic for 8 years and bedridden for months. Because I didn’t have a past migraine diagnosis, doctors didn’t even consider vestibular migraine as a possibility; however, I regularly experience sinus-type migraine headaches, which were simply not diagnosed as such. I also have multiple family members who suffer from debilitating migraine headaches, but neither of these factors were considered by my past doctors.
To read more about the diagnostic criteria for migraine headaches, you can visit the International Headache Society website.
2. You experience vestibular symptoms in the presence or absence of migraine headache.
Do you experience vestibular symptoms such as vertigo, dizziness, spinning, rocking, motion sensitivity, balance disturbance, spatial disorientation, etc. lasting 5 minutes to 72 hours or even weeks to months in the absence or presence of headache? These could be symptoms of vestibular migraine.
There are many ways to describe the sensations experienced by vestibular migraineurs. In trying to communicate my symptoms to doctors, I would say it felt like I was on a boat or a turbulent airplane 100% of the time, that it felt like the floor would sometimes give out beneath my feet, it felt as though my legs were not communicating, making it impossible to walk especially in low light conditions and downhill, etc..
NOTE: The word ‘headache’ can be misleading
The classic, well-known migraine headache is a severely painful, unilateral headache characterized by throbbing, nausea, and other grossly unpleasant symptoms. What most people don’t know is that a ‘sinus headache,’ or pressure in the forehead can also be a migraine. One study conducted by Schreiber et al. in 2004 screened 2,991 patients who were self- or doctor-diagnosed with sinus headaches, and found that 88% of these patients were misdiagnosed, and actually met the diagnostic criteria for migraine headache!
I have never experienced a ‘classic’ migraine headache. Instead, my migraine headaches come in the form of forehead ‘sinus’ pressure, ear fullness, and ‘ice pick’ headaches that occur in transient, throbbing bursts behind the left side of my forehead.
3. Your vestibular symptoms vary in their severity over time.
Do your vestibular symptoms go up and down in their severity over time? If so, you may be experiencing vestibular migraine. As opposed to other vestibular conditions, migraine symptoms will wax and wane with exposure to a variety of migraine triggers. See question number 5 for more information on these triggers.
If your vestibular symptoms are constant and non-fluctuating in their severity, then it is unlikely that vestibular migraine is the cause.
4. In an episode, you experience other classic migraine symptoms.
While experiencing an episode of your vestibular symptoms, do you also experience classic migraine symptoms like the ones listed below?
- Headache– Moderately to severely painful, especially on one side of the head. This can also include ‘sinus pressure’ headaches (see above).
- Sensory Sensitivity– Sensitivity to sensory input such as sound (phonophobia), lights (photophobia), smells, or touch.
- Pulsating Sensation in Head– The sensation that you can feel your heart beating or throbbing inside of your head. Sometimes, this can be heard as well as felt– I call this a ‘woosh-woosh’ sensation.
- Nausea / Vomiting
- Ringing in the Ears (Tinnitus)
5. Your symptoms increase with exposure to known migraine triggers.
If you’re a woman, do your symptoms increase with your period, or did your symptoms start around menopause? Do you feel worse after eating/drinking certain foods like caffeine, alcohol, chocolate, MSG, Aspartame, etc.? Migraine triggers can be grouped into 4 major groups, which are listed out and elaborated upon below, and include behavioral, hormonal, dietary/chemical, and environmental sources. Do you notice your symptoms increasing 0 to 72 hours after exposure to any of these triggers?
- Behavioral– Stress, crying, sleep disturbance (waking up early, going to bed late, etc.), or strenuous exercise. Note that what’s considered ‘strenuous’ is different for everyone.
- Hormonal– In women, migraines can be precipitated by changes in hormones before, during, or after menstruation or menopause.
- Dietary / Chemical– Certain foods like chocolate, caffeine, alcohol, MSG, Aspartame are well-known dietary migraine triggers; however, there are many other foods that can cause migraines in some people. These include preservatives, dyes, additives, source of tyramine (anything aged, smoked, pickled, overripe like raisins, cheeses, nuts, preserved meats, etc.), and other foods like onions, bananas, and citrus.
- Environmental– These include weather conditions including storms, barometric pressure changes, high temperatures/heat, humidity, visual stimulation (flickering lights, sun through trees while driving), strong smells (perfumes, soaps), and more.
6. Your vestibular symptoms significantly reduce your quality of life.
If your vestibular symptoms moderately or severely reduce your quality of life by reducing your ability to work, drive, walk, socialize, etc., then you may have vestibular migraine. If your life is only somewhat hindered by your symptoms, you could still have early onset vestibular migraine, but it is less likely; however, this was the case for me– that my symptoms began to severely impact my life months to years after they began.
Many of the vestibular migraineurs I come in contact with are either partially or entirely incapacitated by their illness. I spent 10 months in bed as a result of my symptoms, and have heard similar stories from others. I will say, though, that my symptoms started out as far less severe; mild to moderate fatigue, occasional vertigo or unsteadiness, and progressed to severe while untreated over a period of years.
What to do if it is vestibular migraine:
If you answered ‘yes’ to all 6 of these questions, then it is possible that you have vestibular migraine. So, what now?
- Understand the treatment of vestibular migraine. This includes (but is not limited to):
- Lifestyle changes like sleep hygiene, fasting avoidance, adequate hydration, stress reduction, etc.
- Identifying and avoiding your migraine triggers.
- Trying migraine medications like preventatives, abortives, and supplements.
- Don’t make too many changes at once! Go slow. Once you learn about the medications, supplements, foods, and lifestyle changes that can make you feel better, you’ll want to try all of them at once. But if you do, you’ll have no way to separate what’s helping, what’s hurting, and what’s doing nothing. I know it’s hard, but make one change at a time. When it comes to adding medications, you may want to give yourself as long as 2-3 months without making any other changes. For something like adding a new supplement, take it for 2-3 weeks before deciding if it helps or hurts, or adding something else. Patience is key when it comes to migraine recovery!
- Find an ENT and/or neurologist who treat vestibular migraineurs with a multi-faceted approach including everything listed in the bullet point above.
- Get evaluated by a vestibular professional! Many vestibular conditions frequently co-occur with vestibular migraine, because the constant abnormal activity in specific areas of the brain results in cell death and problems in the vestibular, visual, and sensory systems. These shortcomings need to be identified and treated by a vestibular professional as soon as possible.
- Know that you’re not alone! There are thousands and thousands of vestibular migraine and migraine sufferers in the United States alone. If you’re into social media, check for migraine support groups on Facebook or Meetup.com, for example. Your journey to overcome your vestibular migraine symptoms won’t be easy, but you can do this!
For more information from My Migraine Brain, please visit with the link below.