life rebalanced chronicles

LIFE REBALANCED CHRONICLESOur New Docuseries

Premieres in August

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SUMMER 2021

A QUARTERLY NEWSLETTER OF THE VESTIBULAR

DISORDERS ASSOCIATION

VESTIBULAR.ORG :: EDITION 20XX2 VESTIBULAR.ORG :: SUMMER 20212

CONTENTS

3-5SPOTLIGHT

Meet nine vestibular warriors

6LRC DIRECTOR’S STATEMENT

Recovery through filmmaking

7DONOR TO WATCH

Jeffrey Fuchs on giving back

8-9BALANCE AWARENESS WEEK

Mark your calendars and get involved

10-11THE ECONOMIC BURDEN OF

VERTIGO

What is the cost of being dizzy?

12-15BREAKING THE “DIZZY—ANXIOUS—DIZZY” CYCLE

How to practice mindfulness for healing

VEDA STAFF

CYNTHIA RYAN, Executive Director

ELIZABETH LADD, Development Administrative Assistant

MICHELLE EYRES, Development Manager

KAREN ILARI, Bookkeeper

RYAN MARQUARDT, Website & Database Manager

ANDRÉE SCOLLARD, Patient & Family Resource Coordinator

SHANNON YENTZER, Communications Manager

On the Level is a quarterly publication of the

Vestibular Disorders Association (VeDA). Information

in this newsletter is not intended as a substitute for

professional healthcare. VeDA does not recommend

any particular course of treatment, clinic, or health

care practitioner. The opinions expressed in these

articles are those of the authors and not necessarily

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

for publication. No part of this publication may be

reproduced without written permission. © 2021

All rights reserved.

BOARD of DIRECTORS

President :: Kathleen Stross, DPT - Pearland, TX

Vice President :: Jordan Tucker, DPT - Troutville, VA

Treasurer :: Holly Fisher, Ed.D. - Coppell, TX

Secretary :: Danielle Tate, DPT - Damascus, MD

Dennis Fitzgerald, MD - Philadelphia, PA

Patricia Gerend, MS - San Francisco, CA

Louise Geib, M. Ed - Atlantic Beach, FL (Trustee)

Sal Gruttadauria, AUD, SLP - Buffalo, NY

Bryce Salvador - Westfield, NJ (Honorary)

EXECUTIVE DIRECTOR

Cynthia Ryan, MBA - Portland, OR

MEDICAL & SCIENTIFIC ADVISORS

Chair :: P. Ashley Wackym, MD - New Brunswick, NJ

Richard Clendaniel, PT, PhD - Durham, NC

Joel A. Goebel, MD, FACS - St. Louis, MO

Timothy C. Hain, MD - Chicago, IL

Janet Helminski, PT, PhD - Chicago, IL

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

Jay Rubinstein, MD, PhD - Seattle, WA

Michael Schubert, PT, PhD - Baltimore, MD

Alain Semont, PhD, PT - Paris, France

Neil T. Shepard, PhD - Rochester, MN

Hinrich Staecker, MD, PhD - Kansas City, MO

Jack J. Wazen, MD, FACS - Sarasota, FL

Yuri Agrawal, MD - Baltimore, MD

VESTIBULAR.ORG :: EDITION 20XX VESTIBULAR.ORG :: EDITION 20XX 3

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.

VESTIBULAR.ORG :: SUMMER 2021 VESTIBULAR.ORG :: SUMMER 2021 3

NICOLLE CURE

Nicolle is a Colombian-American artist based in Miami, Florida. Nicolle creates art inspired by her Sudden Unilateral Hearing Loss (SSHL) experience. Her signature series, The Colors of Sound, is a

collection of fluid abstract paintings that explore the relationship between sound and life. Nicolle’s art has been showcased worldwide, and she has been featured in magazines, blogs, and other publication. You can see more of Nicolle’s incredible artwork and find out where it is on display and sold on her Instagram (@nicollecure_art) and Facebook (facebook.com/nicolle.cure.artist) pages. As a result of her work raising awareness about hearing loss and invisible disabilities, Nicole was awarded the Leadership Scholarship by Americans for the Arts in 2018.

JOHAN “THE CHAPPINESS GUY”

Johan, also known as “The Chappiness Guy,” is an extroverted, loving, family guy. At only 33 years old, Johan’s world was turned upside down by a diagnosis of Vestibular Migraines and Persistent Postural Perceptual Dizziness (PPPD).

Before his illness, Johan felt like he was on top of the world. He had a successful career, had just bought a house, and was planning a wedding with the love of his life. Then, on April 18, 2019, Johan’s world began spinning. His symptoms included head pressure, ear fullness, neck pain, dizziness, loss of balance, visual disturbances, light sensitivity, and inability to focus. Almost two years later Johan is learning to thrive, thanks to some much needed adjustments, such as diet changes, exercise, vestibular rehabilitation therapy, supplements, and medication. Johan 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

Meet the Life Rebalanced Chronicles Cast


connect with VeDA’s wonderful community of Vestibular Warriors.

LYNN JOHNSON

Lynn’s life became unbalanced Thanksgiving 2015. She had been feeling off, then woke up with imbalance and loud tinnitus (ringing) in her right ear. As days passed, her symptoms continued to get worse. Five months and four doctors later, she was diagnosed with

Autoimmune Inner Ear Disease (AIED) and Bilateral Vestibular Hypofunction. Her symptoms include bilateral hearing loss, oscillopsia (jumping vision), and imbalance. Lynn says that if she had been given the correct diagnosis in the beginning, they might have been able to save her hearing.

“This disease has robbed me of my hearing, my career as high school biology teacher, my ability to walk, to drive, and so many things,” says Lynn. “But I refuse to let it rob me of my joy and quality of life.” Lynn is a VeDA Ambassador because she is passionate about spreading awareness, educating, and advocating on behalf of patients like herself so that misdiagnosis can be prevented. She currently helps facilitate the Autoimmune Inner Ear Disorder Facebook Group.

RISHI BHOSALE

Rishi immigrated from India six years ago to pursue his Master’s degree. Living in New York, he currently works for American Express as a Senior Product Manager. Active and outgoing, “making new friends is my second nature,” says Rishi. “My motto is, life should be large, not long.” In

March 2020 Rishi was sick with the flu, when he was suddenly struck with a vertigo attack.

After that, Rishi’s life started spiraling downhill. “Lights bothered me and I had constant imbalance, complimented by anxiety and panic disorder,” says Rishi. After months of doctor visits, Rishi was diagnosed with Vestibular Neuritis with hypofunction in his right ear.

Now, after months of vestibular rehabilitation therapy and yoga, Rishi is on the road to recovery. “I do have off days but I am in a much better space,” he says. “I am here for my fellow vestibular sufferers to guide them and provide tips and tricks to manage these symptoms, since there is no guidebook for how to live life with a vestibular disorder.” Follow Rishi on Instagram @vestibularbalanced.

SANDY BRUNNER

Sandy is a speech-language pathologist and writer and co-founder of Solutions for a Better Day. Her “voyage” with Mal de Debarquement Syndrome (MdDS) and vestibular migraines began with a literal voyage to Europe in 2018. After a few airplane, car, and

boat rides, she arrived on solid ground but her whole world was still constantly in motion. She continues to experience rocking, bobbing, and swaying, and has been trying to get her land legs back ever since.

Her coping strategies and skills have improved, and so have her symptoms, albeit very, very slowly. Sandy is hopeful she’ll be in remission someday, but until then she tries to ride the waves of MdDS and live her best boat life, despite the dizziness. Sandy became a VeDA Ambassador to raise awareness and help others keep living life to the fullest with MdDS. She chronicles her struggles and triumphs on Instagram @lifewithoutlandlegs and in her blog: lifewithoutlandlegs.com.

SIX EPISODES FOCUSED ON

REBALANCING BODY, MIND,

SPIRIT, RELATIONSHIPS, SELF, AND LIFE.

VESTIBULAR.ORG :: EDITION 20XX VESTIBULAR.ORG :: EDITION 20XX 5 VESTIBULAR.ORG :: SUMMER 2021 VESTIBULAR.ORG :: SUMMER 2021 5

STEVE SCHWIER

After being diagnosed with Meniere’s Disease in 2013, Steve was capable of little more than staying on his couch and enduring his symptoms. Last year, Steve hopped on an e-bike and peddled 1,400 hundred miles from Denver, Colorado to Columbus, Ohio to bring awareness

to Meniere’s. His difficult and grueling ride is chronicled in his memoir, On the Vertigo: One Sick Man’s Journey to Make a Difference. Despite the horrendous nature of the disease, Steve tells his story with humor, grace and heartfelt reflection. His ride raised more than $10,000, all of which went to Meniere’s Disease awareness and research. Reach out to him on Instagram @onthevertigo or Facebook @Meniere’s:/Menieres-On-the-Vertigo.

RUPAL RAJANI

Rupal is a broadcast journalist, with over 29 years’ experience working with the British Broadcasting Company (BBC). Rupal has produced programs and interviewed celebrities at BBC Leicester, BBC Asian Network, and East Midlands Today. Born in Uganda, Rupal arrived in the UK when

she was two. Rupal’s documented journey back to her country of birth won a Race in the Media award in 2005. Eleven years ago Rupal was diagnosed with Vestibulopathy with Visual Preference, which has affected her balance significantly. With regular physiotherapy, she was eventually able to return to work after an eight-month absence. Her condition deteriorated in early 2015 and forced her to retire. She now works as a freelancer and writes about how her condition has affected her life. Rupal is Head of Communications with Life on the Level, a support group and resource

for vestibular patients in the UK. Connect with Rupal on her blog @rupalrajani.blogspot.com or subscribe to her on her YouTube channel @Rupal Rajani.

ALICIA WOLF

Alicia was diagnosed with vestibular migraine in 2017, which altered the course of her life. She went from being a fun-loving, world-traveling 30-year-old newlywed to housebound and barely functional. Overwhelmed by her symptoms,Alicia imagined her life was over. Finding the right neuro-otologist and the

right treatment plan took months, but in the past two years she’s become stronger than she would have thought possible. Through the “Heal Your Headache” diet, vestibular rehabilitation therapy, supplements, and ballet, she’s back to living life to its fullest. Alicia started The Dizzy Cook, a diet and lifestyle website for those with migraine and vestibular disorders, where she shares recipes and tips that have helped her get her life back, in the hopes that it will help others in some small (or big) way.

DAVID MORRILL

David’s vestibular disorder was caused by a stroke that affected the part of the brain that controls balance. During his illness and recovery, he found himself struggling with constant dizziness and balance problems. Looking for information online, David finally found VeDA. “VeDA

helped me understand my disorder with all the information and research they have done through the years,” says David. “I knew at that time I had to give back, and focused all my energy on helping to educate the public so more people could understand these disorders.” His credo now is that if we speak in one voice collectively, we can make a difference. David facilitates the largest vestibular support group on Facebook @Vestibular Disorders Support Group.

SIX EPISODES FOCUSED ON

REBALANCING BODY, MIND,

SPIRIT, RELATIONSHIPS, SELF, AND LIFE.


KIMBERLY STARTED NEEDLE-FELTING TO CALM HER VESTIBULAR SYSPTOMS. REX IS ONE OF HER WOOLEN CREATIONS.

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 conditions has been a large part of redis-covering my purpose. Engaging with and directing the nine vestibular warriors in Life Rebalanced Chronicles has meant so much more to me than just a job. It has been a toolkit, a source of inspiration, and a deep well of solidarity as I’ve pored through the casts’ monthly video submissions, piecing their experiences together into powerful, cohesive narratives.

I have wept, laughed out loud, and feverishly taken notes for my personal growth while creating this series. There are common threads between our subjects, and highlighting these shared experiences will be educational and enlightening for vestibular circles. But you don’t have to have a vestibular disorder to relate to the universal truths in these stories. We are all navigating challenges in life. This series is about something bigger than a specific disorder. It’s about human perseverance and healing - even when there isn’t always a cure.

ABOUT THE DIRECTOR

KIMBERLY WARNER

Kimberly is a filmmaker and photographer based in Portland, Oregon who brought Life Rebalanced Chronicles to fruition for all to be inspired . In 2015, Kimberly began experiencing unexplained symptoms, including constant rocking, bobbing and swaying, which was first diagnosed as cervicogenic vertigo, followed by vestibular migraine and MdDS. Kimberly draws from her experience as a vestibular patient in her storytelling, honoring the lived experience of everyone who suffers from these invisible yet debilitating conditions. “From the outside we look normal,” Kimberly says about suffering from misunderstood and misdiagnosed vestibular disorders. “Inside it’s a messy, uncomfortable journey of being alive, with no fix in sight.” You can also check out Kimberly’s award-winning docu-series, Unfixed, on her website unfixedmedia.com.


VeDA Was There For Me

Jeffrey Fuchs’ vestibular experience started with a couple bouts of BPPV. 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 cannot make the kinds of commitments he would like to make. He retired from teaching just a few months after the episode that led to his second diagnosis. The retirement was planned, but the vertigo made it seem urgent. He managed to push himself to take a few classes and then apply to law school, which he attended as a “dizzy senior.” Jeff got a JD and passed the bar, but has not practiced law. “It would be ill advised for me to attempt to represent clients as I can’t always represent

myself,” he says. “I let my donations do a little of what I wish I could do physically.”

Jeff encourages people who have found VeDA’s resources helpful to themselves or a family member to join him in supporting these services. “Our gifts provide a universe of support, a ton of answers, and the possibility of relief if not a cure for others who are also struggling with vestibular symptoms. I can’t imagine anyone who has a vestibular disease or a loved one of theirs not donating to VeDA.”

JEFF GRADUATING FROM LAW SCHOOL AS A “DIZZY SENIOR,” PICTURED HERE WITH HIS NIECE AND NEPHEW.


BALANCE AWARENESS WEEK September 19-25, 2021

Close your eyes and stand on one foot. It’s hard right? Now imagine having that same disorienting feeling on two feet, and with your eyes open. Balance is something most of us take for granted. We don’t often think about our balance—until we lose it.

While most people may not be familiar with the word “vestibular”—a system in your inner ear that sends signals to your brain to tell you where you are in space—many of us have likely experienced the awkward, sometimes even scary feeling, when we momentarily lose our balance.

Whether it comes on gradually over time or all of a sudden, bouts of dizziness, vertigo, and nausea can make many of life’s routine tasks virtually intolerable. Everyday life – from getting around your house to grocery shopping - becomes a progressively challenging obstacle

course to navigate.

That’s why VeDA pioneered Balance Awareness Week in 1997 - to shine a light on invisible balance disorders. When everyone is more aware, we can better understand the vestibular patient experience and be empathetic to those who need our support—family, friends, co-workers, and neighbors.

While many balance disorders are incurable, faster and more accurate diagnosis, along with effective coping strategies, can greatly improve quality of life for those who suffer with these invisible chronic illnesses.

Join VeDA this September for Balance Awareness Week, and together we can support people struggling with dizziness, vertigo and imbalance on their journey toward a life rebalanced.

IMAGINE LIVING LIFE WITHOUT BALANCE


BALANCE AWARENESS WEEK September 19-25, 2021

Life Rebalanced Chronicles (LRC) is a six-episode docuseries featuring nine incredible vestibular warriors. When the fragile vestibular organs of the inner ear and brain are damaged by illness or injury, people can lose the ability to balance or be affected physically, mentally, and emotionally. Vestibular impairment forces adaptation to a “new normal,” and often the discovery of a life rebalanced. All of the courageous individuals featured in LRC have looked fear, anxiety, and loneliness in the face and said, “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.

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.

2. Share VeDA’s social media posts with your online community.

3. Watch the “Life Rebalanced Chronicles” docuseries and share, share, share!

4. Create a peer-to-peer fundraising page and ask your friends and family to support vestibular awareness.

LEARN MORE AT vestibular.org/baw

DOCUSERIES


INTRODUCTION

Dizziness and vertigo are common in the U.S. It is estimated that dizziness can occur in 17-30% of individuals and vertigo in 3-10%.

Dizziness is a broad term, which can include lightheadedness, pre-syncope (sensation of almost passing out), unsteadiness, and vertigo. Vertigo is an illusion of movement, typically described as a spinning sensation. Both dizziness and vertigo can have a huge impact on one’s daily function, affecting the ability to perform daily activities including household and work duties. These symptoms may also place stress on relationships with family and friends. This study aims to estimate the combined economic burden of dizziness and vertigo for adults in the U.S.

METHODS

Researchers analyzed 9 years’ of data (2007-2015), looking at participants’ treatment for a period of two years.

They examined total cost and number of visits required for inpatient, outpatient, emergency room, home health visits, and prescription drug usage. Of the 221,273 patients, there were 5,275 with self-reported dizziness or vertigo, 66% female and 34% male.

RESULTS

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

attributable to dizziness or vertigo was $2,658.73. Cost was found to increase with age. Patients in the Northeast reported significantly higher expenditure ratios compared to the Midwest, South, and West. Patients with vertigo or dizziness had significantly increased medical costs compared to those without for all sectors (inpatient, outpatient, ER, home health, and prescription medications). Additionally, the mean number of annual visits per patient was higher for each of these healthcare sectors for patients with vertigo or dizziness compared to those without either condition. Patients with

RESEARCH

HEALTH RELATED COST FOR

PATIENTS WITH DIZZINESS OR VERTIGO WAS NEARLY TWO

TIMES GREATER THAN FOR THOSE WITHOUT THESE

CONDITIONS.

THE ECONOMIC BURDEN OF DIZZINESS AND VERTIGO IN THE UNITED STATES

Review by Danielle Ritchie, DPT


vertigo or dizziness had 15 more medication refills compared to those without these conditions.

DISCUSSION

After controlling for demographic and socioeconomic factors, patients with dizziness or vertigo have a 1.38 -fold annual incremental increase in cost of care. The

overall annual economic cost of treatment for the total sample was $48.1 billion, with $13.3 billion directly attributable to vertigo and dizziness. The prevalence of vertigo or dizziness in this study was 2.73%, which is lower compared to other studies. Therefore, the economic cost may be even higher than this research estimated. This study does not account for indirect costs, such as missing work, loss of productivity, disability, or death. Dizziness and vertigo can increase risk for falls and therefore lead to elevated anxiety and stress. Individuals may 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.

SUMMARY

Vertigo and dizziness account for a substantial economic cost across many 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 guidelines to optimize cost effectiveness for this population.

Source: Ruthberg, Jeremy S. et al. ‘The Economic Burden of Vertigo and Dizziness in the United States’. 31 (2) : 81 – 90.

HEALTH RELATED COST FOR

PATIENTS WITH DIZZINESS OR VERTIGO WAS NEARLY TWO

TIMES GREATER THAN FOR THOSE WITHOUT THESE

CONDITIONS.

LEAVE ALEGACY

By joining VeDA’s legacy society you can make a difference for millions of people struggling

with dizziness, imbalance, and other symptoms of vestibular disorders for years to come.

Planned giving enhances your financial well-being by reducing your estate and income taxes,

while providing long-term and enduring support to the

vestibular community.

Contact Michelle Eyres, Development Manager,

for more [email protected]

503.229.7705


As a Clinical Psychologist and fellow vestibular patient, I am intimately aware of the “dizzy—anxious—dizzy” cycle. I’ve experienced it personally and have commonly seen it in my practice. In fact, individuals who live with vestibular disorders are

three times more likely than the general population to suffer from anxiety, depression, and/or panic disorders.1,2 One reason for this high rate of co-occurrence is that anxiety,3 depression,4 and the vestibular system5 each activate the sympathetic nervous system, which governs our fight or flight response. The cycle goes like this: 1) vestibular symptoms activate the sympathetic response, 2) anxiety spikes due to discomfort of the symptoms, which further stimulates the sympathetic response, and 3) the sympathetic spike from the anxiety exacerbates vestibular symptoms, which then causes more anxiety, and so on. The result can be a seemingly endless cycle of “dizzy—anxious (or depressed)—dizzy” that can be difficult to break. However, I have some good news! There are two evidence-based psychotherapy practices that effectively address anxiety and depression associated with living with chronic illness: Cognitive Behavioral Therapy (CBT)6 and Acceptance and Commitment Therapy (ACT).7 Both psychotherapies are steadily gaining support for the vestibular population.8,9 I personally use techniques from each of these therapies in my own life. Curious as to how they work?

WHAT IS CBT?

CBT was developed in the 1960s by psychiatrist Aaron Beck. In his psychiatry practice, Beck noticed that his patients’ negative thinking styles were

keeping them stuck in their depression.10 To treat this negative thinking style Beck developed an innovative Cognitive Model. The Cognitive Model helps mental health professionals and patients understand how thinking and behavior contributes to mental health difficulties and target these thoughts and behaviors in therapy to improve mental health. The main theory underlying CBT is that we can change our thoughts, or use “cognitive restructuring,” to adopt a more balanced and healthy way of thinking, which will, in turn, mitigate mental health concerns.11

Core beliefs underlie the cognitive model. These are the deeply held beliefs we have about ourselves, the world, and our futures. They are thought to develop in early childhood and are influenced largely by our early family environment and caregivers. They can also be shaped by major life events, such as the diagnosis of a vestibular disorder. Core beliefs color the way we see the world and influence how we will react to any given situation. Though central to restructuring thoughts, core beliefs are typically tackled later in therapy after a strong therapeutic relationship has been developed and the patient has learned how to use cognitive restructuring in daily situations.

The Cognitive Model posits that all situations lead to thoughts, behaviors, physiological sensations (or how we feel in our bodies), and emotions. These will be examined early in therapy to help patients gain insight into how they react to situations and what can be changed to help improve these four areas (thoughts, behaviors, physiological sensations, and emotions). Though we can target thoughts, behaviors, and physiological sensations in therapy, emotions are a byproduct of the other three and cannot be targeted directly.

In the image at right (Figure 1), you’ll see arrows pointing to all four areas because this cycle is multidirectional; each of the four influences one another. We target thoughts by recognizing our negative thoughts or “cognitive distortions,” and by learning new, more balanced, ways to think about situations we encounter in our daily lives. Behaviors can be targeted by scheduling exercise, activities that we enjoy and activities that make us feel productive, as well as by exposing ourselves to things

COPING + SUPPORT

BREAKING THE “DIZZY-ANXIOUS-DIZZY” CYCLE

By Emily Kostelnik, Ph.D., Rooted Behavioral Education


we might be avoiding (a big one for vestibular disorders!). Physiological sensations can be targeted by exercises that calm our sympathetic nervous system such as diaphragmatic breathing, meditation, progressive muscle relaxation, and biofeedback. Finally, we do not intervene directly on emotions; rather, they are influenced by changing thoughts, behaviors, and physiological sensations.

WHAT IS ACT?

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 does not have to be (e.g., all the extra things we tell ourselves during said attack like, “I hate this,” “I’m so broken,” or “I’m going to feel this way forever”).

ACT relies heavily on metaphors. One that is particularly helpful for understanding the ACT philosophy is the simple exercise of placing your hands in front of your face. Your hands are your vestibular symptoms. While your hands

are in front of your face, you have difficulty seeing or doing anything because you are completely focused on your hands. If you were to take your hands and put them in your lap (i.e., stop putting all of your attention on your vestibular symptoms), you are much more able to engage in the things that are most important to you in life. Your hands (or vestibular symptoms) are still with you, but they do not dictate everything about your life. ACT uses interventions to promote flexible thinking and behavior, based on the assumption that the following six areas perpetuate our suffering.13

1. Avoiding our experiences. We try to avoid or escape unwanted experiences such as vestibular symptoms (e.g., dizziness, vertigo, imbalance, tinnitus) and/or difficult emotions (e.g., anxiety, depression, panic). For those of us with vestibular concerns, this ranges from small behaviors like not moving our head or eyes in ways that make us feel uncomfortable to more global behaviors like refusing to leave the house. Acceptance is the intervention for avoidance. Acceptance is embracing our private events, without judgment,


Include customized “why” statement.

YOU CAN HELP.

and without trying to change the experience. 2. Getting caught up in our thoughts. When we become so caught up in our thoughts as “truths,” it prevents us from acting in ways that could actually improve quality of life. An ACT intervention for this would include cultivating curiosity about thoughts as just thoughts and not assuming them to be true.

3. Attaching to your identity. We tell ourselves stories about ourselves every day. We identify ourselves by our family roles, our careers, and even our health status. This becomes problematic for people with vestibular concerns because we can either have difficulty accepting the diagnosis and compare our current functioning to previous functioning, or we can become too identified with the diagnosis such that it consumes our entire identity. ACT teaches patients that they are not their experiences, 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 behavioral goals to start living in service of these values, thus creating a more meaningful life.

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 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. We become so rigid, avoidant, and caught up in our thoughts and the stories we tell ourselves about ourselves, that acting in service of the things that are most important to us becomes impossible. ACT targets this by setting specific behavioral goals.

HOW MIGHT I FIND A CBT OR ACT THERAPIST? If you’re hoping to work individually with a mental

health provider, you might consider which therapy feels like a better fit for you. When finding a mental health provider, you can ask about their “theoretical orientation” to determine what type of therapy they provide, or ask specifically about their training in CBT and/or ACT. Because CBT is a more well-established therapy, it may be easier to locate a CBT therapist. However, the most important thing is finding a provider with whom you feel comfortable and safe.

REFERENCES

1. Bigelow RT, Semenov YR, du Lac S, Hoffman HJ, Agrawal Y. Vestibular vertigo and comorbid cognitive and psychiatric impairment: the 2008 National Health Interview Survey. J Neurol Neurosurg Psychiatry. 2016;87(4):367-372. doi:10.1136/jnnp-2015-310319

2. Eckhardt-Henn A, Best C, Bense S, et al. Psychiatric comorbidity in different organic vertigo syndromes. J Neurol. 2008;255(3):420-428. doi:10.1007/s00415-008-0697-x

3. Hoehn-Saric R, McLeod DR. The peripheral sympathetic nervous system. Its role in normal and pathologic anxiety. Psychiatr Clin North Am. 1988;11(2):375-386.


THANK YOU TO BALANCE SOCIETY MEMBER

LAURA S.!(Lifetime Donor of $5,000)

“Eight years ago, I inherited a charitable fund and immediately thought of VeDA. In 1996, I

woke up to my room moving up and down, out of control. I was also experiencing my usual

migraine headache. Thanks to Dr. Doug Lakin and Dr. Terry Fife (Scottsdale/Phoenix, Arizona),

the Epley maneuvers were administered for BPPV. Shortly thereafter, my research led me to VeDA and the Vestibular Migraine component. VeDA was, and still is, of tremendous support

to my inner ear and migraine challenges. Thank you, VeDA! I plan to donate each year, so that you may continue to provide us with current

vestibular research.”

THANK YOU TO NEW BALANCE BENFACTORS

($250 or more)

ESTHER BLUM JULIA ANNE BOURNE

DR. JOAN BECICHCARISSA L. PICHON

Every year, more than 2 million people visit VeDA’s website looking for answers.

Our Facebook posts reach nearly 4 million people, and our Patient & Family Resource

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4. 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

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