Caitlyn Toretto, Vestibular Migraine Patient and Clinical Trial Participant
This article originally appeared in the Winter 2024 issue of On The Level.
By Caitlyn Toretto
9 doctors.
4 tests and scans.
8 months of seeking a diagnosis.
3 misdiagnoses.
11 treatment trials.
Countless debilitating days, sleepless nights, and hours incessantly researching.
This is my quantitative journey with vestibular migraine over the last 4 years, one that I know many (if not most) vestibular migraineurs will relate to.
The most shocking statistic, though, remains the alarming prevalence of vestibular migraine – estimated to affect 1% of the global population (totaling MILLIONS of people) – juxtaposed with barely anyone, including medical professionals, knowing much about it. Exactly one person in my life, my brilliant sister-in-law, was familiar with vestibular migraine when I was eventually diagnosed. I certainly wasn’t.
The Search For Help
When my world quite literally turned upside down in January 2020 and I could not get clarity from my doctors, I found invaluable resources and comfort through books like Heal Your Headache by David Buchholz, organizations like VeDA, and vestibular warriors like Alicia Wolf (also known as the Dizzy Cook). As my knowledge about vestibular disorders and migraines deepened in the months that followed, I felt empowered to self-advocate for better care.
This led me to Dr. Jeffrey Sharon at the University of California, San Francisco in January 2021. As a neurotologist, Dr. Sharon is uniquely qualified to examine the nuances of vestibular migraine and has been actively conducting research to better understand the condition.
At that time, Dr. Sharon was seeking patients for his clinical trial to test the efficacy of a proven migraine medication, Emgality, on treating vestibular migraine. I was seeking a path toward recovery. So I decided to join the trial as a patient participant.
Desperate for Normalcy
Participating in the trial felt like an easy decision at the time. It was only months later when people would comment on my bravery that I paused to reflect on whether this was somehow courageous. In order to be brave, we must feel fear yet persist anyway. I honestly felt no fear, I felt desperation.
I was desperate to regain a sense of normalcy: where a drive on the freeway wouldn’t require abruptly pulling over to confront waves of nausea and vertigo, where my workday wouldn’t be disrupted because all I could manage to do was lie on the ground under my desk for extended periods of time, where I no longer asked for validation about whether the room was indeed smoky or the picture was actually blurry or if anyone else felt an earthquake or if it was just me.
The small chance for that normalcy, and not just for me but the millions of others suffering, was more than enough incentive to raise my hand to participate if given the opportunity. It also helped that Emgality had already received FDA approval for the treatment of migraine headaches, which lowered the risk.
Finding Peace in my Diagnosis
After being screened and completing a round of bloodwork, I was selected to participate.
This was the first moment I felt totally confident in my diagnosis after a year of navigating conflicting information. This new confidence gave me permission to move from the long discovery phase to focusing on action.
The Clinical Trial
The trial guidelines were simple enough: My participation would span 4 months, I would receive a few injections of either Emgality or a placebo (one was self-administered at home, the others at UCSF), I needed to respond to a daily text message about my symptoms, and I could withdraw from the trial at any time.
Along the way, I learned a few things that I hadn’t fully considered about participating:
- Double blind studies mean you truly will never know whether you are part of the test group or the control group. Of course, this was shared during the intake both verbally and in writing, but I found myself holding irrational hope for an eventual reveal. So much so that my insatiable curiosity is still wondering about this today.
- Not everyone receives the trial medication, so participating could hypothetically pause progress on an already lengthy treatment journey. In my case, I do suspect I received the placebo since I was later prescribed Emgality and experienced a decrease in the frequency and severity of my symptoms. Conversely, my symptoms worsened during the 4 months of the trial, and I faced some of my sickest days.
- I was provided a modest stipend that perhaps covered the cost of gas and parking, but there were additional costs in the time commitment and general discomfort of self-administering an injectable medication.
A Sacrifice Worth Making
Ultimately, I reflect on that period as a sacrifice I made for the advancement of science and a greater awareness and understanding of vestibular migraine.
Would I do it again? Absolutely. Have I mentioned the millions of people who might benefit from these findings? This includes me as well as some amazing migraineurs I have met in this supportive community who were there for me on my roughest days.
As Dr. Sharon has said, “To create the future we want, we have to shape it.”
More Studies
My enthusiasm for participating in these trials is also evidenced by the two additional research studies I completed with Dr. Sharon’s team.
During one, I completed a functional MRI while watching dizzy-inducing videos (as if MRIs aren’t uncomfortable enough). I was ecstatic that I could walk out upright, but the 48 hours recovering at home were punishing. That said, I am fascinated to learn if they found any insights about the pathophysiology of vestibular migraine that could inform future therapeutic directions.
The other study explored whether vestibular symptoms can be improved using a virtual reality-based physical therapy session.
This one was the largest time commitment with 10 bi-weekly appointments on UCSF’s campus.
However, it also proved to be the most efficacious with a noticeable improvement in the severity of my symptoms and my vestibular system’s ability to recalibrate following heightened episodes of dizziness. My physical therapist during this study, Alex Dien, enriched my knowledge of vestibular disorders and migraines, and he has remained instrumental in my treatment ever since.
There was no outside funding for this study, though, and my insurance was billed at the rate for a standard physical therapy session.
The Costs That Follow
A major downside of trying experimental therapies in our medical system is the financial cost of continuing treatment.
Emgality, had I received it, was provided to participants at no cost during the clinical trial due to the funding the research team received. Yet, the prescription approval process for Emgality outside of the trial has been intensive with multiple insurance providers disputing coverage over the last couple of years.
I continue to commute over an hour to San Francisco for the virtual reality-based physical therapy sessions because it is unavailable elsewhere, and I incur the costs of travel and the copayment with each visit.
I also just started using a vagus nerve stimulation device called GammaCore that I pay for wholly out-of-pocket since insurance does not cover it, even though it is non-invasive and has also been noticeably effective.
Still, I adamantly believe these are worthwhile challenges to overcome in my pursuit of “normalcy.” Or at least my new version of normalcy.
My Journey Today
I still wouldn’t say I feel 100%. My body holds me accountable for meticulous managing my health on a daily basis, but I have returned to living my life.
I continue to feel optimistic knowing Dr. Sharon and others are working tirelessly to further the research on vestibular migraine and identify better treatment options. I am extremely grateful to Dr. Sharon and his research teams including Alex Dien, Ricky Chae, Adam Gardi, and Max Hum.
I am also fortunate to be strengthened by my incredible support network of family and friends who have unconditionally been there for me every step of the way over the last 4 years.
And my final note of thanks is reserved for VeDA, whose abundance of resources and expansive community fueled my determination when I needed it most and who continues to raise awareness about important topics like this one.