We’re Making Great Headway in the Migraine Field, Let’s Continue the Momentum for Vestibular Migraine
I spent most of my life with chronic daily migraine undiagnosed and untreated. I often find myself wondering: what if my migraine and chronic pain history were more complicated? What if my symptoms were not as typical of migraine?
I was in preschool when my chronic migraine began. I did not talk about it much because doctors had responded by saying things like: “No one gets a headache every day”; or “According to your lab results you’re perfectly healthy.” For the most part at that age, the symptoms I did verbalize to physicians were straightforward migraine symptoms: severe pain on one side of my head and face, nausea, vomiting, sensitivity to light and sound, sore neck, etc. I experienced thirteen years of these symptoms before I received a diagnosis. Another thirteen years went by before I had an effective treatment plan.
As a teen, when a migraine caused me to have symptoms of dizziness, a well-meaning adult told me that it was the ibuprofen I took for my “headache” that caused me to feel dizzy, not the headache itself. When I talk to people diagnosed with vestibular migraine I often wonder if the road to diagnosis and treatment is even more arduous for them.
Symptoms of vestibular migraine (VM) are diverse and can be difficult to differentiate. VM is characterized by migraine with vestibular symptoms (the vestibular system provides our brains with information about motion, head position, and spatial awareness) such as vertigo and dizziness. Sometimes VM can appear without head pain, or head pain is not the most bothersome symptom. This makes it much less likely that the person will receive the correct diagnosis. In fact, VM was not recognized as a distinct diagnosis until the 1980s, and now, some 40 years later, we do not yet have an accurate understanding of its prevalence. However it is believed that about 7% of patients presenting in dizziness clinics and 9% presenting in migraine clinics have VM1.
A paper was just published in Frontiers of Neurology with the purpose of launching the field of VM forward in terms of diagnosis and care. You can see the full article here.
This paper is the result of an expert working group called together by the Association of Migraine Disorders (AMD). This group included experts in the fields of otolaryngology, neurotology, neurology, audiology, and physical therapy. The result was the identification of seven “Care Gaps” for patients with VM, along with recommendations to address these gaps. Below I summarize the thoughts and recommendations of this expert panel.
CARE GAP 1: There is no universal agreement on exactly what VM looks like clinically.
RECOMMENDATIONS: (1) Establish a registry of patients diagnosed with VM to document symptoms. (2) Use this information to refine the diagnostic criteria for VM.
There are so many overlapping symptoms between migraine and VM. It is possible they are part of the same disease spectrum that share the same pathophysiology. At this time, we cannot say for certain.
Currently, there are multiple classification criteria in use for VM, which highlights the lack of agreement/certainty about this disorder. The criteria used do not acknowledge many of the symptoms reported by patients. ICHD-3 diagnostic criteria include both VM and Probable VM. We need to learn more about the symptoms patients are experiencing, document them, and utilize them to improve diagnosis of VM.
CARE GAP 2: VM is underdiagnosed and its related co-morbidities are not well recognized.
RECOMMENDATIONS: (1) Educate providers about VM, its subtypes, and associated complex symptoms. (2) Consider altering International Classification of Disease coding for VM and VM subtypes.
Since there are no diagnostic tests for VM, the clinician must rely on the patient’s history to reach a diagnosis. Symptoms of dizziness and vertigo in VM vary widely among patients and diagnosis can be difficult. Worse, there are comorbidities that often occur with VM and have similar symptoms such as Meniere’s Disease (MD, a disorder of the inner ear with symptoms similar to VM) and Benign Paroxysmal Positional Vertigo (BPPV, disorder of the inner ear that is the leading cause of dizziness) among others. Also, patients may present with more than one vestibular diagnosis. Data has been published that suggests that migraine itself can affect the inner ear and that BPPV and MD could be associated with the process of migraine. Some patients with VM present with tinnitus (ringing in the ears), pressure in the ear), and hearing changes. VM, its sub-types, and its relationship to associated comorbidities are not fully understood. This can complicate diagnosis. It is important that providers understand the complexity of these disorders and that they may occur together.
CARE GAP 3: There is no biomarker or diagnostic test for VM.
RECOMMENDATIONS: (1) Create an improved diagnostic tree for VM using vestibular function testing and possibly perceptual threshold testing. (2) Pursue research to identify a biomarker to help providers differentiate between a patient with VM and Meniere’s Disease (MD).
At this time there is no agreed-upon diagnostic test for vestibular migraine. The current criteria are based on a consensus of the International Headache Society and the Barany Society in the ICHD-3. Some auditory and vestibular tests are carried out to help diagnose VM. Vestibular testing cannot definitively identify the presence of VM, but there is some data to show that certain tests may help separate patients with VM from patients with MD. There is also evidence that some patients with VM may have difficulty completing vestibular tests and can be prone to an attack of VM due to testing. A test of “perceptual threshold”, which is not commonly available clinically at this time, has shown some promise in differentiating patients with VM from those with MD. This test can help discover abnormal perception of spatial orientation in people with VM. Another recent study identified a group of proinflammatory biomarkers in the blood of patients VM. These new diagnostic tests warrant further study as we push forward to find a definitive way of identifying VM, particularly one that differentiates VM from MD.
CARE GAP 4: We do not understand the pathophysiology behind VM, its types (episodic or chronic), or its various symptoms (like spatial disorientation, hearing loss, or vertigo).
RECOMMENDATIONS: (1) Promote both laboratory and clinical research looking into mechanisms of both the central and peripheral nervous system in relation to VM and its symptoms (2) Study the modulation of the trigemino-vascular system (TVS) in the inner ear – perhaps by blocking CGRP.
There are multiple potential interactions between the trigeminal and vestibular systems.
Trigeminal System- Part of the nervous system responsible for sending pain sensation from the face to the brain
Vestibular System – The system responsible for providing our brain with information on motion, head position, and spatial orientation
Therefore, it is possible that there are many paths through which the symptoms of VM can manifest. Data from animal models suggest that the effect of migraine on the trigeminal system can alter the vestibular system and its function. Some of the molecules known to contribute to migraine (such as CGRP and substance P) are also expressed in the vestibular system and could play a role in VM. It is possible that CGRP increases the sensitivity of the balance system in much the same manner as it increases pain sensitivity in people with traditional symptoms of migraine pain. Even the blood flow of the trigeminal nerve and the inner ear (where the vestibular system is located) are related. Stimulation of the trigeminal nerve can cause physiologic increases in the blood flow and neuroinflammation of the inner ear. There is data to support that vasospasm of arteries in the inner ear could explain episodes of hearing loss or vertigo associated with migraine.
Through the use of functional imaging data (brain data associated with completing particular tasks) scientists have been able to show that the brain itself may be involved in promoting the dizziness and spatial orientation component of VM.
CARE GAP 5: We do not understand the biological reasons for gender disparity in VM.
RECOMMENDATION: Study the link between hormone changes and vestibular symptoms.
VM occurs 2-3 times more often in women than in men. In fact, women with a history of migraine often present with vestibular symptoms post-menopause even if their head pain has improved. Areas in our brain associated with the onset of migraine are influenced by estrogen and progesterone, but we are not clear on their exact mechanism of action. This warrants further study.
CARE GAP 6: There are a lack of treatments for VM (both pharmacologic and non-pharmacologic).
RECOMMENDATIONS: (1) Promote new evidence-based ideas for treatment of VM (2) Create and publish new guidelines for conducting clinical trials of VM treatments. (3) Conduct clinical trials of pharmaceutical and non-pharmaceutical VM treatments.
Most medication treatments for VM are prescribed off-label (meaning they are not specifically indicated for VM) and are based on data for typical migraine. Medications used in VM have been outlined in the medical literature, but data for their use is based on observational studies and the reported clinical experience of physicians. Recent published data reviews have shown that VM patients show improvement with many of the usual migraine prophylactic medications, such as: antiepileptic drugs, tricyclic antidepressants, selective serotonin reuptake inhibitors (SSRIs), serotonin and norepinephrine reuptake inhibitors (SNRIs), calcium channel blockers, beta blockers, and tricyclic antidepressants. However, the diversity of symptoms and lack of a good VM measurement tool make it difficult to determine if any of these treatments is superior to another. Two randomized clinical trials have been carried out looking at the use of triptans (rizatriptan and zolmitriptan) in acute VM. These studies did not show a significant benefit for use of these medications in VM. There currently is an ongoing clinical trial to determine the safety and efficacy of galcanezumab for the treatment of VM.
There is evidence to support the use of greater occipital nerve blocks and vagal nerve neuromodulation. Vestibular rehabilitation and other physical activities that improve coordination and spatial perception (examples can be dancing, ping-pong, boxing) are thought to be helpful in improving the symptoms of VM, but more studies are needed in this area.
CARE GAP 7: There is a need for a “Patient-Reported Outcome Measure” (PROM) to help quantify the impact of VM on quality of life and assess the impact of any interventions.
RECOMMENDATION: Create a PROM specific to VM.
VM can significantly impact quality of life. A tool is needed that can measure the severity of VM and its effect on a patient’s quality of life for both research and clinical use. Without this tool, it is difficult to assess the impact of any interventions on patients with VM. Development and validation of a VM-specific outcome measure will help immensely when it comes to the development and funding of clinical trials. It will also help individual patients and their physicians determine if their treatment plans are helping.
In summary, the recommendations made by this expert panel to improve the field of VM fall into three categories:
(1) establish a registry of data from patients experiencing VM
(2) advance VM research to improve our understanding of this disorder
(3) disseminate information and education related to VM
I cannot help but notice some similarities between the barriers that need to be overcome in VM and those we are currently overcoming in migraine. We have made a lot of headway in the migraine field, partially because of work done by groups like this one. I trust that this work will influence further research that will improve the lives of those with vestibular migraine.
As a patient what can you do?
1) Advocate for more science (talk to friends and family about the condition, raise awareness on social media)
2) Donate to Research is Hope so AMD can launch a patient registry (100% of proceeds will help AMD fund medical research to help close these gaps)
3) Ask your doctor about vestibular migraine
4) Share this blog with your primary care doctor so they can learn more about this condition.
- Mallampalli MP, Rizk HG, Kheradmand A, Beh SC, Abouzari M, Bassett AM, Buskirk J, Ceriani CEJ, Crowson MG, Djalilian H, Ginoza L, Goebel JA, Kuhn JJ, Luebke AE, Mandala M, Nowaczewska M, Spare N, Teggi R, Versino M, Yuan H, Zaleski-King A, Teixido M, Godley F. Care Gaps and Recommendations in Vestibular Migraine: An Expert Panel Summit. Front Neurol 03 January 2022.
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MEET THE AUTHOR
Lindsay Weitzel, PhD experienced chronic daily migraine from the time she was four years old until she was thirty. This continuous pain from such an early age caused her to have complex regional pain syndrome (a constant pain like burning fire) down the right side of her face, head, neck, and arm. Lindsay believes that having no memory without daily pain gave her a unique perspective on living with and outsmarting migraine and chronic debilitating pain. Lindsay has a PhD in Analytical Health Sciences, a Master’s degree in Nutrition, and is a certified yoga teacher. She is the host of Heads UP, the Weekly Webcast and Podcast of the National Headache Foundation, writes frequent pieces as a migraine medical writer, and has published a graphic novel for kids and adventurous adults with migraine called Super Zoe the Migraine Hero (available on Amazon.) Lindsay works one-on-one with people who experience debilitating and chronic migraine. Her philosophy is that we need to build a “Rock Wall” against migraine with lifestyle and medication strategies that are held together by our “mortar” which is our mentality. Lindsay is the founder of a closed FaceBook group for people with migraine called MigraineNation. Join MigraineNation at (https://www.facebook.com/groups/migrainenation/) for social support and the latest migraine-related news and treatments. You can also see more about Lindsay on FaceBook (https://www.facebook.com/LindsayWeitzelPhD/) or contact her through her webpage (LindsayWeitzel.com).