LIFE REBALANCED CHRONICLES - SUMMER 2021 Our New Docuseries Premieres in August - Vestibular Disorders Association
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SUMMER 2021
LIFE
REBALANCED
CHRONICLES
Our New Docuseries
Premieres in August
PAGE 3
A QUARTERLY NEWSLETTER
OF THE VESTIBULAR
DISORDERS ASSOCIATION
CON T E NTS
3-5
SP OTLI GHT
On the Level is a quarterly publication of the Meet nine vestibular warriors
Vestibular Disorders Association (VeDA). Information
in this newsletter is not intended as a substitute for
professional healthcare. VeDA does not recommend
6
any particular course of treatment, clinic, or health
LRC D I RECTOR’S STATE ME N T
care practitioner. The opinions expressed in these
articles are those of the authors and not necessarily Recovery through filmmaking
those of VeDA’s staff, medical and scientific advisors,
or board of directors. The publisher reserves the
right to accept, reject, or edit any materials received 7
for publication. No part of this publication may be
reproduced without written permission. © 2021
D ONOR TO WATCH
All rights reserved. Jeffrey Fuchs on giving back
BOARD of DIRECTORS
President :: Kathleen Stross, DPT - Pearland, TX 8-9
Vice President :: Jordan Tucker, DPT - Troutville, VA
Treasurer :: Holly Fisher, Ed.D. - Coppell, TX
BALANC E AWARENESS WE E K
Secretary :: Danielle Tate, DPT - Damascus, MD Mark your calendars and get involved
Dennis Fitzgerald, MD - Philadelphia, PA
Patricia Gerend, MS - San Francisco, CA
Louise Geib, M. Ed - Atlantic Beach, FL (Trustee) 10-11
Sal Gruttadauria, AUD, SLP - Buffalo, NY
Bryce Salvador - Westfield, NJ (Honorary)
THE ECONOM I C BURDE N OF
V ERTI GO
EXECUTIVE DIRECTOR
Cynthia Ryan, MBA - Portland, OR
What is the cost of being dizzy?
MEDICAL & SCIENTIFIC ADVISORS
Chair :: P. Ashley Wackym, MD - New Brunswick, NJ
12-15
Richard Clendaniel, PT, PhD - Durham, NC BREAKI NG T HE “ D IZZY—
Joel A. Goebel, MD, FACS - St. Louis, MO
ANXI OUS—D I ZZY ” CYCL E
Timothy C. Hain, MD - Chicago, IL
Janet Helminski, PT, PhD - Chicago, IL How to practice mindfulness for healing
Gary Jacobson, PhD - Nashville, TN
Jeffrey Kramer, MD - Chicago, IL
David Newman-Toker, MD, PhD - Baltimore, MD
James Phillips, PhD - Seattle, WA
Steven Rauch, MD - Boston, MA
V EDA STAFF
Jay Rubinstein, MD, PhD - Seattle, WA CYNTHIA RYAN, Executive Director
Michael Schubert, PT, PhD - Baltimore, MD
ELIZABETH LADD, Development Administrative Assistant
Alain Semont, PhD, PT - Paris, France
Neil T. Shepard, PhD - Rochester, MN MICHELLE EYRES, Development Manager
Hinrich Staecker, MD, PhD - Kansas City, MO KAREN ILARI, Bookkeeper
Jack J. Wazen, MD, FACS - Sarasota, FL
RYAN MARQUARDT, Website & Database Manager
Yuri Agrawal, MD - Baltimore, MD
ANDRÉE SCOLLARD, Patient & Family Resource Coordinator
SHANNON YENTZER, Communications Manager
2 VESTIBULAR.ORG :: SUMMER
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Life Rebalanced Chronicles is a six-episode docuseries featuring nine incredible vestibular
warriors. Each episode focuses on a part of the human experience impacted by living with
vestibular dysfunction: Mind, Body, Spirit, Relationships, Self, and Life. You’ll laugh, you’ll cry,
you’ll want to share these touching videos, which highlight the highs and lows that span the
spectrum of the vestibular patient experience.
Meet the Life Rebalanced Chronicles Cast
NICOLLE CURE JOHAN “THE CHAPPINESS GUY”
Nicolle is a Johan, also
Colombian- known as “The
American artist Chappiness Guy,”
based in Miami, is an extroverted,
Florida. Nicolle loving, family guy.
creates art At only 33 years old,
inspired by her Johan’s world was
Sudden Unilateral turned upside down
Hearing Loss by a diagnosis of
(SSHL) experience. Vestibular Migraines
Her signature and Persistent
series, The Colors Postural Perceptual
of Sound, is a Dizziness (PPPD).
collection of fluid abstract paintings that Before his illness, Johan felt like he was on
explore the relationship between sound top of the world. He had a successful career,
and life. Nicolle’s art has been showcased had just bought a house, and was planning
worldwide, and she has been featured in a wedding with the love of his life. Then, on
magazines, blogs, and other publication. April 18, 2019, Johan’s world began spinning.
You can see more of Nicolle’s incredible His symptoms included head pressure, ear
artwork and find out where it is on display fullness, neck pain, dizziness, loss of balance,
and sold on her Instagram (@nicollecure_ visual disturbances, light sensitivity, and
art) and Facebook (facebook.com/nicolle. inability to focus. Almost two years later
cure.artist) pages. As a result of her work Johan is learning to thrive, thanks to some
raising awareness about hearing loss and much needed adjustments, such as diet
invisible disabilities, Nicole was awarded the changes, exercise, vestibular rehabilitation
Leadership Scholarship by Americans for therapy, supplements, and medication. Johan
the Arts in 2018. hosts a show called, Vestibular TALKS on his
YouTube channel (Find your Chappiness),
which has over 50 episodes. Johan is a
VeDA ambassador and he hopes to continue
raising awareness and provide a positive
outlet for others to share their journeys and
VESTIBULAR.ORG :: EDITION
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2021 3
connect with VeDA’s wonderful community of After that, Rishi’s life started spiraling downhill.
Vestibular Warriors. “Lights bothered me and I had constant
imbalance, complimented by anxiety and panic
LYNN JOHNSON disorder,” says Rishi. After months of doctor
visits, Rishi was diagnosed with Vestibular
Lynn’s life became Neuritis with hypofunction in his right ear.
unbalanced
Thanksgiving 2015. Now, after months of vestibular rehabilitation
She had been feeling therapy and yoga, Rishi is on the road to
off, then woke up with recovery. “I do have off days but I am in a much
imbalance and loud better space,” he says. “I am here for my fellow
tinnitus (ringing) in vestibular sufferers to guide them and provide
her right ear. As days tips and tricks to manage these symptoms, since
passed, her symptoms there is no guidebook for how to live life with a
continued to get worse. vestibular disorder.” Follow Rishi on Instagram @
Five months and four vestibularbalanced.
doctors later, she
was diagnosed with SANDY BRUNNER
Autoimmune Inner Ear Disease (AIED) and
Bilateral Vestibular Hypofunction. Her symptoms Sandy is a speech-
include bilateral hearing loss, oscillopsia language pathologist
(jumping vision), and imbalance. Lynn says that and writer and co-
if she had been given the correct diagnosis in founder of Solutions
the beginning, they might have been able to for a Better Day. Her
save her hearing. “voyage” with Mal
de Debarquement
“This disease has robbed me of my hearing, Syndrome (MdDS) and
my career as high school biology teacher, my vestibular migraines
ability to walk, to drive, and so many things,” began with a literal
says Lynn. “But I refuse to let it rob me of my joy voyage to Europe
and quality of life.” Lynn is a VeDA Ambassador in 2018. After a few
because she is passionate about spreading airplane, car, and
awareness, educating, and advocating on behalf boat rides, she arrived on solid ground but her
of patients like herself so that misdiagnosis whole world was still constantly in motion. She
can be prevented. She currently helps facilitate continues to experience rocking, bobbing, and
the Autoimmune Inner Ear Disorder Facebook swaying, and has been trying to get her land
Group. legs back ever since.
RISHI BHOSALE Her coping strategies and skills have improved,
and so have her symptoms, albeit very, very
Rishi immigrated from slowly. Sandy is hopeful she’ll be in
India six years ago to remission someday, but until then
pursue his Master’s she tries to ride the waves of MdDS
degree. Living in New and live her best boat life, despite SIX EPIS
York, he currently works the dizziness. Sandy became a VeDA
for American Express Ambassador to raise awareness and FOCUSE
as a Senior Product help others keep living life to the REBALA
Manager. Active and fullest with MdDS. She chronicles her
outgoing, “making new struggles and triumphs on Instagram BODY, M
friends is my second @lifewithoutlandlegs and in her blog: SPIR
nature,” says Rishi. “My lifewithoutlandlegs.com.
motto is, life should
RELATION
be large, not long.” In SELF, AN
March 2020 Rishi was sick with the flu, when
he was suddenly struck with a vertigo attack.
4 VESTIBULAR.ORG :: SUMMER
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STEVE SCHWIER for vestibular patients in the UK. Connect with
Rupal on her blog @rupalrajani.blogspot.com or
After being diagnosed subscribe to her on her YouTube channel @Rupal
with Meniere’s Disease Rajani.
in 2013, Steve was
capable of little more ALICIA WOLF
than staying on his
couch and enduring Alicia was diagnosed with
his symptoms. Last vestibular migraine in
year, Steve hopped on 2017, which altered the
an e-bike and peddled course of her life. She
1,400 hundred miles went from being a fun-
from Denver, Colorado loving, world-traveling
to Columbus, Ohio 30-year-old newlywed to
to bring awareness housebound and barely
to Meniere’s. His difficult and grueling ride is functional. Overwhelmed
chronicled in his memoir, On the Vertigo: One by her symptoms,Alicia
Sick Man’s Journey to Make a Difference. Despite imagined her life was
the horrendous nature of the disease, Steve over. Finding the right
tells his story with humor, grace and heartfelt neuro-otologist and the
reflection. His ride raised more than $10,000, all right treatment plan took months, but in the past
of which went to Meniere’s Disease awareness two years she’s become stronger than she would
and research. Reach out to him on Instagram @ have thought possible. Through the “Heal Your
onthevertigo or Facebook @Meniere’s:/Menieres- Headache” diet, vestibular rehabilitation therapy,
On-the-Vertigo. supplements, and ballet, she’s back to living life
to its fullest. Alicia started The Dizzy Cook, a diet
RUPAL RAJANI and lifestyle website for those with migraine and
vestibular disorders, where she shares recipes
Rupal is a broadcast and tips that have helped her get her life back, in
journalist, with over the hopes that it will help others in some small
29 years’ experience (or big) way.
working with the British
Broadcasting Company DAVID MORRILL
(BBC). Rupal has
produced programs and David’s vestibular
interviewed celebrities disorder was caused by
at BBC Leicester, BBC a stroke that affected
Asian Network, and the part of the brain
East Midlands Today. that controls balance.
Born in Uganda, Rupal During his illness and
arrived in the UK when recovery, he found
she was two. Rupal’s documented himself struggling with
journey back to her country of birth constant dizziness
won a Race in the Media award in and balance problems.
SODES 2005. Eleven years ago Rupal was Looking for information
diagnosed with Vestibulopathy with online, David finally
ED ON found VeDA. “VeDA
Visual Preference, which has affected
ANCING her balance significantly. With regular helped me understand my disorder with all the
physiotherapy, she was eventually able information and research they have done through
MIND, the years,” says David. “I knew at that time I
to return to work after an eight-month
RIT, absence. Her condition deteriorated had to give back, and focused all my energy on
in early 2015 and forced her to retire. helping to educate the public so more people
NSHIPS, could understand these disorders.” His credo
She now works as a freelancer and
ND LIFE. writes about how her condition has now is that if we speak in one voice collectively,
affected her life. Rupal is Head of we can make a difference. David facilitates the
Communications with Life on the largest vestibular support group on Facebook @
Level, a support group and resource Vestibular Disorders Support Group.
VESTIBULAR.ORG :: EDITION
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From the Director
When I developed cervicogenic vertigo,
MdDS and vestibular migraine six years
ago, my life was turned upside-down. My
sense of self dissipated as I watched my
dreams, career, friendships, and confidence
crumble as the constant sensation of being
on a boat took its place. Lost at sea, it took
years to learn there were others like me
and restore hope.
With time, I’ve adapted and pieced myself
together again. Returning to filmmaking
and telling stories of those with chronic
ABOUT THE DIRECTOR conditions has been a large part of redis-
covering my purpose. Engaging with and
KIMBERLY WARNER directing the nine vestibular warriors in Life
Rebalanced Chronicles has meant so much
more to me than just a job. It has been a
Kimberly is a filmmaker and toolkit, a source of inspiration, and a deep
photographer based in Portland, well of solidarity as I’ve pored through the
Oregon who brought Life casts’ monthly video submissions, piecing
Rebalanced Chronicles to fruition their experiences together into powerful,
for all to be inspired . In 2015, cohesive narratives.
Kimberly began experiencing
unexplained symptoms, including I have wept, laughed out loud, and
constant rocking, bobbing feverishly taken notes for my personal
and swaying, which was first growth while creating this series. There
diagnosed as cervicogenic are common threads between our subjects,
vertigo, followed by vestibular and highlighting these shared experiences
migraine and MdDS. Kimberly will be educational and enlightening for
draws from her experience vestibular circles. But you don’t have to
as a vestibular patient in her have a vestibular disorder to relate to the
storytelling, honoring the lived universal truths in these stories. We are
experience of everyone who all navigating challenges in life. This series
suffers from these invisible is about something bigger than a specific
yet debilitating conditions. disorder. It’s about human perseverance
“From the outside we look and healing - even when there isn’t always
normal,” Kimberly says about a cure.
suffering from misunderstood
and misdiagnosed vestibular
disorders. “Inside it’s a messy,
uncomfortable journey of KIMBERLY STARTED NEEDLE-
FELTING TO CALM HER
being alive, with no fix in VESTIBULAR SYSPTOMS.
sight.” You can also check out REX IS ONE OF HER WOOLEN
Kimberly’s award-winning docu- CREATIONS.
series, Unfixed, on her website
unfixedmedia.com.
6 VESTIBULAR.ORG :: SUMMER
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VeDA Was There For Me
Jeffrey Fuchs’ vestibular experience myself,” he says. “I let my donations do a
started with a couple bouts of BPPV. little of what I wish I could do physically.”
In the last ten years he was
diagnosed with Meniere’s
Disease, which forced him to
retire from his job as a special
education teacher. He hasn’t
had a real vertigo attack since
2003 (knock on wood!), but
struggles with other ongoing
symptoms, such as tinnitus.
Recently VeDA’s Development
Manager, Michelle Eyres, asked
Jeff why he supports VeDA.
“I’m fortunate to have a
sufficient income that I
can make donations to
organizations that are
important to me,” says Jeff.
“VeDA was there when I
needed help, and you continue
to be there, so I gave and
continue to give.”
Jeff found VeDA through
an internet search when he
first started experiencing
vestibular symptoms. “VeDA
was the best ever source of
information,” he says.
Jeff says his symptoms
are severe enough that he
JEFF GRADUATING FROM LAW SCHOOL AS A “DIZZY SENIOR,” PICTURED HERE WITH HIS
cannot make the kinds of NIECE AND NEPHEW.
commitments he would like to
make. He retired from teaching just a Jeff encourages people who have
few months after the episode that led to found VeDA’s resources helpful to
his second diagnosis. The retirement was themselves or a family member to join
planned, but the vertigo made it seem him in supporting these services. “Our
urgent. He managed to push himself to gifts provide a universe of support,
take a few classes and then apply to law a ton of answers, and the possibility
school, which he attended as a “dizzy of relief if not a cure for others who
senior.” Jeff got a JD and passed the bar, are also struggling with vestibular
but has not practiced law. “It would be ill symptoms. I can’t imagine anyone who
advised for me to attempt to represent has a vestibular disease or a loved one of
clients as I can’t always represent theirs not donating to VeDA.”
VESTIBULAR.ORG :: EDITION
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BALANCE AWAR
September 19
IMAGINE LIVING LIFE WITHOUT BALANCE
Close your eyes and stand on one course to navigate.
foot. It’s hard right? Now imagine
having that same disorienting feeling That’s why VeDA pioneered Balance
on two feet, and with your eyes open. Awareness Week in 1997 - to shine a
Balance is something most of us take light on invisible balance disorders.
for granted. We don’t often think When everyone is more aware, we
about our balance—until we lose it. can better understand the vestibular
patient experience and be empathetic
While most people may not be to those who need our support—
familiar with the word “vestibular”—a family, friends, co-workers, and
system in your inner ear that sends neighbors.
signals to your brain to tell you where
you are in space—many of us have While many balance disorders are
likely experienced the awkward, incurable, faster and more accurate
sometimes even scary feeling, when diagnosis, along with effective coping
we momentarily lose our balance. strategies, can greatly improve
quality of life for those who suffer
Whether it comes on gradually over with these invisible chronic illnesses.
time or all of a sudden, bouts of
dizziness, vertigo, and nausea can Join VeDA this September for
make many of life’s routine tasks Balance Awareness Week, and
virtually intolerable. Everyday life together we can support people
– from getting around your house struggling with dizziness, vertigo and
to grocery shopping - becomes a imbalance on their journey toward a
progressively challenging obstacle life rebalanced.
8 VESTIBULAR.ORG :: SUMMER
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2021
RENESS WEEK
9-25, 2021 GET INVOLVED
You can help make
vestibular visible while
supporting your friends
and family on their
journey toward a life
rebalanced.
1. Follow VeDA on
Facebook and Instagram.
DOCUSERIES
2. Share VeDA’s social
media posts with your
Life Rebalanced Chronicles online community.
(LRC) is a six-episode docuseries
featuring nine incredible
vestibular warriors. When the 3. Watch the “Life
fragile vestibular organs of the Rebalanced Chronicles”
inner ear and brain are damaged
docuseries and share,
share, share!
by illness or injury, people can
lose the ability to balance or be
affected physically, mentally, and 4. Create a peer-to-peer
emotionally. Vestibular impairment fundraising page and ask
forces adaptation to a “new your friends and family
normal,” and often the discovery to support vestibular
of a life rebalanced. All of the awareness.
courageous individuals featured
in LRC have looked fear, anxiety, LEARN MORE AT
and loneliness in the face and said, vestibular.org/baw
“You will not define me.” Theirs is
a message of hope to millions of
people who struggle with invisible
chronic illness--you are seen, you
are heard, you are valued.
Make sure to watch all the
inspriring episodes, starting
August 17th at vestibular.org/lrc.
VESTIBULAR.ORG :: EDITION
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RESEARCH
THE ECONOMIC BURDEN OF DIZZINESS AND VERTIGO IN THE
UNITED STATES
Review by Danielle Ritchie, DPT
INTRODUCTION METHODS
Dizziness and vertigo are common in the Researchers analyzed 9 years’ of data
U.S. It is estimated that dizziness can occur (2007-2015), looking at participants’
in 17-30% of individuals and vertigo in 3-10%. treatment for a period of two years.
They examined total
cost and number of HEALTH R
visits required for COST
inpatient, outpatient,
emergency room, PATIENT
home health visits, and DIZZINE
prescription drug usage.
Of the 221,273 patients,
VERTIG
there were 5,275 with NEARL
self-reported dizziness TIMES G
or vertigo, 66% female
and 34% male. THAN FO
WITHOUT
RESULTS CONDIT
The mean annual
health-related costs
for patients with
dizziness or vertigo
was nearly two times greater
than for patients without these
conditions. The mean incremental
annual healthcare expenditures
Dizziness is a broad term, which can include attributable to dizziness or vertigo was
lightheadedness, pre-syncope (sensation of $2,658.73. Cost was found to increase with age.
almost passing out), unsteadiness, and vertigo. Patients in the Northeast reported significantly
Vertigo is an illusion of movement, typically higher expenditure ratios compared to the
described as a spinning sensation. Both Midwest, South, and West. Patients with vertigo
dizziness and vertigo can have a huge impact or dizziness had significantly increased medical
on one’s daily function, affecting the ability to costs compared to those without for all sectors
perform daily activities including household and (inpatient, outpatient, ER, home health, and
work duties. These symptoms may also place prescription medications). Additionally, the
stress on relationships with family and friends. mean number of annual visits per patient was
This study aims to estimate the combined higher for each of these healthcare sectors for
economic burden of dizziness and vertigo for patients with vertigo or dizziness compared to
adults in the U.S. those without either condition. Patients with
10 VESTIBULAR.ORG :: SUMMER
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2021vertigo or dizziness had 15 more medication
refills compared to those without these
conditions.
LEAVE A
LEGACY
DISCUSSION
After controlling for demographic and
socioeconomic factors, patients with
dizziness or vertigo have a 1.38 -fold annual By joining VeDA’s legacy society
incremental increase in cost of care. The you can make a difference for
overall annual economic cost of millions of people struggling
treatment for the total sample
with dizziness, imbalance, and
was $48.1 billion, with $13.3 billion
directly attributable to vertigo and
other symptoms of vestibular
RELATED dizziness. The prevalence of vertigo disorders for years to come.
T FOR or dizziness in this study was 2.73%,
which is lower compared to other
TS WITH studies. Therefore, the economic
ESS OR cost may be even higher than this
GO WAS research estimated. This study does
not account for indirect costs, such
LY TWO as missing work, loss of productivity,
GREATER disability, or death. Dizziness and
vertigo can increase risk for falls
OR THOSE and therefore lead to elevated
T THESE anxiety and stress. Individuals may
TIONS. lose their independence and restrict
their activities, therefore affecting
quality of life. Many patients wait a
long time and see many physicians
in order to get an actual diagnosis,
which leads to additional health
care costs. Planned giving enhances your
financial well-being by reducing
SUMMARY your estate and income taxes,
while providing long-term
Vertigo and dizziness account for a and enduring support to the
substantial economic cost across many
vestibular community.
different healthcare settings. Having these
conditions can also affect overall quality
of life, so it is important to strategize how
to best manage these patients. Further
research is needed to develop clinical Contact Michelle Eyres,
guidelines to optimize cost effectiveness for Development Manager,
this population. for more details.
Michelle.Eyres@vestibular.org
Source: Ruthberg, Jeremy S. et al. ‘The 503.229.7705
Economic Burden of Vertigo and Dizziness in
the United States’. 31 (2) : 81 – 90.
VESTIBULAR.ORG :: EDITION
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2021 11COPING + SUPPORT
BREAKING THE “DIZZY-ANXIOUS-DIZZY” CYCLE
By Emily Kostelnik, Ph.D., Rooted Behavioral Education
As a Clinical keeping them stuck in their depression.10 To treat this
Psychologist negative thinking style Beck developed an innovative
and fellow Cognitive Model. The Cognitive Model helps mental
vestibular health professionals and patients understand how
patient, I am thinking and behavior contributes to mental health
intimately aware difficulties and target these thoughts and behaviors
of the “dizzy— in therapy to improve mental health. The main
anxious—dizzy” theory underlying CBT is that we can change our
cycle. I’ve thoughts, or use “cognitive restructuring,” to adopt
experienced it a more balanced and healthy way of thinking, which
personally and will, in turn, mitigate mental health concerns.11
have commonly
seen it in my Core beliefs underlie the cognitive model. These are
practice. In the deeply held beliefs we have about ourselves, the
fact, individuals world, and our futures. They are thought to develop
who live with in early childhood and are influenced largely by
vestibular our early family environment and caregivers. They
disorders are can also be shaped by major life events, such as
three times more likely than the general population the diagnosis of a vestibular disorder. Core beliefs
to suffer from anxiety, depression, and/or panic color the way we see the world and influence how
disorders.1,2 One reason for this high rate of co- we will react to any given situation. Though central
occurrence is that anxiety,3 depression,4 and the to restructuring thoughts, core beliefs are typically
vestibular system5 each activate the sympathetic tackled later in therapy after a strong therapeutic
nervous system, which governs our fight or flight relationship has been developed and the patient has
response. The cycle goes like this: 1) vestibular learned how to use cognitive restructuring in daily
symptoms activate the sympathetic response, 2) situations.
anxiety spikes due to discomfort of the symptoms,
which further stimulates the sympathetic response, The Cognitive Model posits that all situations lead
and 3) the sympathetic spike from the anxiety to thoughts, behaviors, physiological sensations (or
exacerbates vestibular symptoms, which then how we feel in our bodies), and emotions. These
causes more anxiety, and so on. The result can be will be examined early in therapy to help patients
a seemingly endless cycle of “dizzy—anxious (or gain insight into how they react to situations and
depressed)—dizzy” that can be difficult to break. what can be changed to help improve these four
However, I have some good news! There are areas (thoughts, behaviors, physiological sensations,
two evidence-based psychotherapy practices and emotions). Though we can target thoughts,
that effectively address anxiety and depression behaviors, and physiological sensations in therapy,
associated with living with chronic illness: Cognitive emotions are a byproduct of the other three and
Behavioral Therapy (CBT)6 and Acceptance and cannot be targeted directly.
Commitment Therapy (ACT).7 Both psychotherapies
are steadily gaining support for the vestibular In the image at right (Figure 1), you’ll see arrows
population.8,9 I personally use techniques from each pointing to all four areas because this cycle is
of these therapies in my own life. Curious as to how multidirectional; each of the four influences one
they work? another. We target thoughts by recognizing our
negative thoughts or “cognitive distortions,” and by
WHAT IS CBT? learning new, more balanced, ways to think about
situations we encounter in our daily lives. Behaviors
CBT was developed in the 1960s by psychiatrist can be targeted by scheduling exercise, activities
Aaron Beck. In his psychiatry practice, Beck noticed that we enjoy and activities that make us feel
that his patients’ negative thinking styles were productive, as well as by exposing ourselves to things
12 VESTIBULAR.ORG :: SUMMER
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2021we might be avoiding (a big one for vestibular are in front of your face, you have difficulty seeing
disorders!). Physiological sensations can be or doing anything because you are completely
targeted by exercises that calm our sympathetic focused on your hands. If you were to take your
nervous system such as diaphragmatic hands and put them in your lap (i.e., stop putting
breathing, meditation, progressive muscle all of your attention on your vestibular symptoms),
relaxation, and biofeedback. Finally, we do not you are much more able to engage in the things
intervene directly on emotions; rather, they are that are most important to you in life. Your hands
influenced by changing thoughts, behaviors, and (or vestibular symptoms) are still with you, but
physiological sensations. they do not dictate everything about your life. ACT
uses interventions to promote flexible thinking
WHAT IS ACT? and behavior, based on the assumption that the
following six areas perpetuate our suffering.13
ACT (pronounced
like “act”) is a
mindfulness-
based behavior
therapy developed
in the 1980s by
psychologist Steven
Hayes. ACT is based
on the theory that
our use of language
to try to “think” our
way out of internal
experiences leads us
to stay suffering in
those experiences.12
Whereas CBT
focuses on changing
our thoughts
using cognitive
restructuring, ACT
emphasizes changing
our relationship
with our thoughts,
using mindfulness
techniques. ACT
theory suggests
that pain is an
inevitable part of the
human experience (e.g., discomfort and nausea
associated with a vertigo attack), but suffering 1. Avoiding our experiences. We try to avoid or
does not have to be (e.g., all the extra things escape unwanted experiences such as vestibular
we tell ourselves during said attack like, “I hate symptoms (e.g., dizziness, vertigo, imbalance,
this,” “I’m so broken,” or “I’m going to feel this tinnitus) and/or difficult emotions (e.g., anxiety,
way forever”). depression, panic). For those of us with vestibular
concerns, this ranges from small behaviors like
ACT relies heavily on metaphors. One that is not moving our head or eyes in ways that make
particularly helpful for understanding the ACT us feel uncomfortable to more global behaviors
philosophy is the simple exercise of placing like refusing to leave the house. Acceptance is
your hands in front of your face. Your hands are the intervention for avoidance. Acceptance is
your vestibular symptoms. While your hands embracing our private events, without judgment,
VESTIBULAR.ORG :: EDITION
SUMMER20XX
2021 13and without trying to change the experience. health provider, you might consider which therapy
2. Getting caught up in our thoughts. When we feels like a better fit for you. When finding a mental
become so caught up in our thoughts as “truths,” it health provider, you can ask about their “theoretical
prevents us from acting in ways that could actually orientation” to determine what type of therapy
improve quality of life. An ACT intervention for this they provide, or ask specifically about their training
would include cultivating curiosity about thoughts as in CBT and/or ACT. Because CBT is a more well-
just thoughts and not assuming them to be true. established therapy, it may be easier to locate a
CBT therapist. However, the most important thing is
3. Attaching to your identity. We tell ourselves stories finding a provider with whom you feel comfortable
about ourselves every day. We identify ourselves by and safe.
our family roles, our careers, and even our health
status. This becomes problematic for people with REFERENCES
vestibular concerns because we can either have
difficulty accepting the diagnosis and compare our 1. Bigelow RT, Semenov YR, du Lac S, Hoffman HJ,
current functioning to previous functioning, or we Agrawal Y. Vestibular vertigo and comorbid cognitive
can become too identified with the diagnosis such and psychiatric impairment: the 2008 National Health
that it consumes our entire identity. ACT teaches Interview Survey. J Neurol Neurosurg Psychiatry.
patients that they are not their experiences, 2016;87(4):367-372. doi:10.1136/jnnp-2015-310319
but rather an observer of their
experiences.
4 Lacking clear values. This occurs
when we become out of touch with
what is most important to us in life.
Clarifying our values helps us to make
YOU
behavioral goals to start living in
service of these values, thus creating a
more meaningful life.
CAN
5. Not living in the present moment.
This might include attaching to how
things used to be for us before our
diagnosis, or having difficulty letting
go of what we had planned for our
HELP.
futures. Mindfulness practice is
the key to combating this problem.
Mindfulness helps us to live in the
present moment rather than in the
past or the future.
6. Becoming paralyzed by all of the
above areas, and thus not engaging
in the things that are most important to us. This
is the consequence of the other five areas above. 2. Eckhardt-Henn A, Best C, Bense S, et al. Psychiatric
We become so rigid, avoidant, and caught up in our comorbidity in different organic vertigo syndromes. J
thoughts and the stories we tell ourselves about Neurol. 2008;255(3):420-428. doi:10.1007/s00415-008-
ourselves, that acting in service of the things that 0697-x Include customized “why”
are most important to us becomes impossible. ACT statement.
targets this by setting specific behavioral goals. 3. Hoehn-Saric R, McLeod DR. The peripheral
sympathetic nervous system. Its role in normal
HOW MIGHT I FIND A CBT OR ACT THERAPIST? and pathologic anxiety. Psychiatr Clin North Am.
1988;11(2):375-386.
If you’re hoping to work individually with a mental
14 VESTIBULAR.ORG :: SUMMER
EDITION 20XX
20214. Veith RC, Lewis N, Linares OA, et al. Sympathetic
Nervous System Activity in Major Depression:
Basal and Desipramine-Induced Alterations
in Plasma Norepinephrine Kinetics. Arch Gen
Psychiatry. 1994;51(5):411–422. doi:10.1001/
archpsyc.1994.03950050071008
5. Yates BJ, Bolton PS, Macefield VG. Vestibulo-
sympathetic responses. Compr Physiol.
2014;4(2):851-887. doi:10.1002/cphy.c130041
6. Bernard P, Romain AJ, Caudroit J, et al. Cognitive
behavior therapy combined with exercise for adults
with chronic diseases: Systematic review and
meta-analysis. Health Psychol. 2018;37(5):433-450. THANK YOU TO
doi:10.1037/hea0000578 BALANCE SOCIETY MEMBER
LAURA S.!
7. A-Tjak JG, Davis ML, Morina N, Powers MB,
Smits JA, Emmelkamp PM. A meta-analysis of the (Lifetime Donor of $5,000)
efficacy of acceptance and commitment therapy “Eight years ago, I inherited a charitable fund
for clinically relevant mental and physical health and immediately thought of VeDA. In 1996, I
problems. Psychother Psychosom. 2015;84(1):30- woke up to my room moving up and down, out
36. doi:10.1159/000365764 of control. I was also experiencing my usual
migraine headache. Thanks to Dr. Doug Lakin
8. Schmid G, Henningsen P, Dieterich M, Sattel and Dr. Terry Fife (Scottsdale/Phoenix, Arizona),
H, Lahmann C. Psychotherapy in dizziness: a the Epley maneuvers were administered for
systematic review. J Neurol Neurosurg Psychiatry.
BPPV. Shortly thereafter, my research led me to
VeDA and the Vestibular Migraine component.
2011;82(6):601-606. doi:10.1136/jnnp.2010.237388
VeDA was, and still is, of tremendous support
to my inner ear and migraine challenges. Thank
9. Kuwabara J, Kondo M, Kabaya K, et al. you, VeDA! I plan to donate each year, so that
Acceptance and commitment therapy combined you may continue to provide us with current
with vestibular rehabilitation for persistent vestibular research.”
postural-perceptual dizziness: A pilot study. Am
J Otolaryngol. 2020;41(6):102609. doi:10.1016/j. THANK YOU TO NEW
amjoto.2020.102609 BALANCE BENFACTORS
($250 or more)
10. Beck, AT. Thinking and depression. I.
Idiosyncractic content and cognitive distortions. ESTHER BLUM
Arch Gen Psychiatry. 1963;9:324-333. doi:10.1001/ JULIA ANNE BOURNE
archpsyc.1963.01720160014002 DR. JOAN BECICH
CARISSA L. PICHON
11. Beck, JS. Cognitive behavior therapy: Basics and
beyond. 2nd ed. Guilford Press; 2011.
Every year, more than 2 million
12. Hayes SC, Strosahl K, Wilson KG. Acceptance people visit VeDA’s website looking for answers.
and commitment therapy: An experiential approach Our Facebook posts reach nearly 4 million
to behavior change. Guilford Press; 1999. people, and our Patient & Family Resource
Coordinator provides one-on-one coaching to
13. Luoma JB, Hayes SC, Walser RD. Learning ACT: hundreds more.
An acceptance and commitment therapy skills
Your support makes it possible!
training manual for therapists. New Harbinger
Publications; 2018.
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