Participate in Research What Should I Know About Vestibular Research Why does it take so long for researchers to develop new treatments for vestibular dysfunction? Learn more about the research process, and find out
The goal of the Ambassador Board is to engage patients and healthcare professionals in raising awareness about vestibular disorders within their communities and among their social networks.
You can make a difference! Join us to help raise awareness about the challenges of living with a vestibular disorder.
An ambassador is an enthusiastic and dedicated vestibular patient or professional, or the family member of a vestibular patient, who is interested in sharing his or her time and expertise to help elevate awareness for vestibular disorders. As an ambassador you are passionate about our cause and committed to keeping abreast of new, relevant issues that may impact the vestibular community.
VeDA Ambassadors participate in four (or more) suggested activities per year:
VeDA will provide participants with a PR Ambassador Kit. Ambassadors will be recognized on VeDA’s website and in our quarterly newsletter. Ambassadors’ activities will be promoted on VeDA’s social media sites and online calendar of events.
My vestibular disorder was caused by a stroke that knocked out the part of the brain that controls balance. During my recovery I found myself struggling with constant dizziness and balance problems. I didn't really know where to turn, until I found VeDA. They helped me understand my disorder with all the information and research they have done through the years. I knew at that time I had to give back, and focused all my energy on helping to educate the public so more could understand this disorder. The following quote sums up my entire mission. If we speak in one voice collectibility we can "Make a Difference."
Diagnosis: Perilymph Fistula
My story is a long one but it all started 3 years ago when I had my 3rd concussion. The swaying and constant imbalance started as soon as I hit my head. As the year went on, I started to develop more symptoms like terrible migraines and dizziness. The migraines left but the dizziness stayed. A year later, I got the flu and blew my nose too hard and reopened a fistula in my right ear that had been there since my last concussion. I had vertigo for 3 days and it never left. I recently just had surgery to repair the fistula and am on the mend!
Gig Harbor, WA
Diagnosis: Labyrinthitis, Meniere's, Vestibular Neuritis
My nightmare began in 2012. I came down with the typical head cold, little did I know that this virus would change my life forever. It damaged my vestibular nerve in me right ear, which left me constantly dizzy, blurred vision and foggy. I thought my life would never be the way it once was. Through the long journey involving ENT's, neurologists, physical therapists and naturalpath's,I finally feel like I have my life back. I am no where back to "normal" but I am loving life again. I am honored to be an Ambassador for this organization. And I look forward to guiding others to happier lives.
Saint Louis, MO
Diagnosis: Migraine Associated Vertigo (MAV), Vestibular Migraine, and Vestibular Neuritis.
My world was turned upside down in November 2020. Fortunately, it only took until December to receive my vestibular migraine diagnosis by an ENT. In March, an amazing team of audiologists did a comprehensive examination on me and reaffirmed my chronic VM diagnosis with the addition of a vestibular neuritis diagnosis. It's been a daily battle ever since, and I am so grateful to have found this organization. Dealing with vestibular dysfunction has been THE most isolating, frustrating, terrifying, and anxiety-ridden experiences of my life, but knowing that I am not alone has helped greatly. Through my faith in God, love and support from my family and friends, and a supportive community of fellow vestibular warriors, I know I will be ok. I share about my vestibular experiences on Instagram: brookfindingbalance - I hope you'll join!
Diagnosis: Migraine Associated Vertigo (MAV), Vestibular Migraine
I was just recently diagnosed with Vestibular Migraine in November 2020, but my story begins in March 2019 when my world went upside down as I was getting out of bed to get ready for work. I was 24, newly married, and in my 3rd year of teaching. My dizziness started with a BPPV/Labyrinthitis diagnosis by my GP, where I was then sent to VRT. Several months later I was referred to an ENT where I had balance testing and it was suggested that vestibular neuritis set things in motion for vestibular migraine. It wasn't until 2020 that my neurologist confirmed the vestibular migraine diagnosis. I am 26 now and learning to take joy in the small victories, putting myself first, and learning my "new normal." I am looking forward to sharing hope with others who are in the same situation or are supporting someone experiencing it.
Port Jervis, NY
Diagnosis: Vestibular Neuritis
I was sick due to flu in March 2020, when suddenly one day serious spinning hit me for few seconds. After that it was all downhill! Lights bothered me and I had constant imbalance complimented by anxiety and panic disorder.. after months of doctors visits I was diagnosed with VN with hypofunction in my right ear. Now after months of VRT and Yoga I am on my road to recovery. I do have off days but I am in a much better space. I am here for my fellow vestibular issue sufferers to guide them and provide necessary tips and tricks to manage these symptoms since it doesn’t have any specific guidebook or medication.
Diagnosis: Vestibular Migraine
Hi everyone! My name is Lara and I am a proud mummy of identical twin girls. I was diagnosed with vestibular migraines in 2012 and vestibular neuritis in 2013. My disorders have been life-changing for me, trying to deal with invisible illnesses is very hard and difficult for family and friends to understand. As well as having vestibular disorders I have also suffer from GAD (General Anxiety Disorder) and depression. I have spent some time now, making some major changes in my life to help, as well as CBT (Cognitive Behavioral Therapy) and VRT (Vestibular Rehabilitation Therapy) I am so passionate about raising awareness of debilitation vestibular conditions and help support other sufferers and educate non-sufferers. Despite everything, I have a very positive outlook on life and hope to spread my positivity and motivation to others. Visit my blog at https://mummyseeingdouble.com.
Diagnosis: Vestibular Migraine, Mal De Débarquement
Hi! I'm Sandy, a speech-language pathologist and writer. My "voyage" with MdDS and VM started in 2018 on a trip to Europe. After a few airplane, car, and boat rides, my whole world was constantly in motion on land. I felt and saw rocking, bobbing, and swaying, as if I was still on a boat. I've been trying to get my land legs back ever since! Since then, my coping strategies and skills have improved, and so have my symptoms-- very, very slowly. I'm hopeful I'll reach remission someday, but until then I'm trying to ride the waves of MdDS and live my best boat life despite the dizziness! I decided to become a VeDA Ambassador to raise awareness and help other keep living life to the fullest with MdDS. I chonical my struggles and triumphs on instagram and in my blog.
Migraine Associated Vertigo (MAV), Vestibular Migraine
My Vestibular life started on October 12, 2018 - the day I got married. I remember sitting in my wedding dress and feeling really dizzy, with the room spinning. I thought it was just dehydration so I drank some water and got on with the rest of our day! But a few days later at my job as an Emergency Room nurser, I had to sit myself on the ground and call for help as my world started to spin even more violently. After many diagnoses, I was *officially* diagnosed with Vestibular Migraines in march 2019. After spending about 5 months out of work, I came back to the ER full time and worked for another 9 months before I relapsed in December 2019. Unfortunately, this time left me out of work for the 1.5 years, and I started all over again in VRT (Vestibular Rehab therapy). I am grateful for those in my life who have helped my journey. Instagram, Twitter, Blog
Saravanan Chockalingam [Van] PT, DPT, CLT, CYT: Van is a physical therapist who specializes in vestibular rehabilitation. He’s been practicing physical therapy for more than 24 years and focusing his treatment on vestibular patients for 12 years. Dr. Chockalingam also teaches vestibular rehabilitation internationally and participates on VeDA’s Patient Education Committee to help improve the educational materials we have available for patients.
River Edge, NJ
Diagnosis: Migraine Associated Vertigo
On October 27, 2016 , I was 34 weeks pregnant. That day, I woke up early to prepare for the day ahead and was feeling well. I’m a high school teacher and I remember I was at work when and halfway through my first class when I felt strange . There were some snow flurries gracefully swirling in the air and I thought I was affected by the barometric pressure. As the day progressed so did the strange “dizzy” feeling which eventually culminated in a full blown vertigo attack. I was terrified and the severe attack lasted for several days . I saw many doctors and was referred to a vestibular rehabilitation therapist . At that time, I was living with fear and had to learn new medical terminology. Additionally, I was terrified that something terrible was going to harm my unborn child. I delivered my healthy and beautiful boy at 41 weeks, but was still left with severe and chronic symptoms that also were the catalyst for severe depression. I searched for answers everywhere and stumbled upon Vestibular Audiologist, Joey Remenyi, on Youtube. I eventually signed up for her Rock Steady program, and have also purchased her book. Joey has empowered me to heal through the process of neuroplasticity by having faith and trust in my body. I’d like to say that it has worked and that I have regained most of my balance . In August of 2020, I was diagnosed with Stage 2 , node negative breast cancer. Through the process of neuroplasticity, I had a fairly seamless recovery from surgery and am doing well on chemotherapy. In fact , it is the gift of vertigo that has allowed me to heal so well mentally, physically and spiritually through the breast cancer journey. There is so much possibility in life. I never thought I’d reach this point of feeling so empowered and passionate about helping others. Just when you’re ready to give up, there’s always someone there who will provide you with support and help you to find the solutions that you need! I’d like to thank this wonderful group and also acknowledge the time that physical therapist Dr. Kimberly Bell provided to me several years ago via a memorable telephone conversation and many email exchanges. I am so grateful for all of you who have supported my healing in this vestibular community!
PS: My son is now 4 & is healthy, happy and thriving :
Diagnosis: MdDS, Vestibular Migraine, Vestibular Hypofunction, Otosclerosis, Vestibular Neuritis
I was first diagnosed with vertigo 18 years ago. In October 2016, I started to feel pressure and numbness on the right side of my head and face, as well as tinnitus and weakness. As my symptoms intensified I was forced to withdraw from school, stop driving, and take a leave of absence from work. By the end of 2016 and into 2017 I was diagnosed with VM, otosclerosis, hyperascusis and MdDS. I was introduced to VeDA by fellow Ambassador, Lara Bishop in her remarkable Facebook support group. With her encouragement, I decided to become a VeDA Ambassador, to help bring awareness to the community and to offer support to fellow spinners, while I, too learn to walk in this new life. I share openly about my journey on Instagram.
Diagnosis: Migraine Associated Vertigo & Cholesteatoma
In 2006, I began to experience symptoms that were difficult to explain. Visually and spatially, things looked and felt strange, and I felt disconnected. That same year, I was diagnosed with a cholesteatoma. It has been recurrent; I’ve had a total of 5 surgeries over a decade to remove it. My symptoms seemed to worsen after the discovery of most recent cholesteatoma, and I finally got in with a new ENT/otologist who diagnosed me as having vestibular migraines. I had been told for many years that my symptoms were just anxiety-related, so it was a relief to have a diagnosis. The hardest tasks for me are driving, grocery shopping, and busy visual scenes. My hope is to raise awareness about vestibular disorders, so no one has to go for so long like I did, not knowing what was wrong! My Blog
Diagnosis: Migraine Associated Vertigo
I’ve been diagnosed with bilateral vestibular migraines: associated vertigo since 2017 but I've had the symptoms for 5yrs now. It’s a battle dealing with it because you don’t know when an episode will happen.
Diagnosis: Vestibular Migraine
One day I was a normal college student lusting for everything life had to offer me; another day Vestibular Migraine decided to make all of my days dizzy and out me in a brain haze. Grieving your "old" life is normal. Healing isn't easy but it makes you so much stronger and so much more resilient than you think. I never wish for my old life anymore. Fighting to get better and to have a mental clarity is so important. Mental health and vestibular disorders go hand-in-hand. We must not throw in the towel because we are only getting started!
Diagnosis: Migraine Associated Vertigo (MAV)/ Vestibular Migraine & Ménière’s Disease
I had my first taster of vertigo 20 years ago. It was Christmas time and my sons were both very young. The room spun for 3 hours then I was OK. I really didn't think anything more about it for another few years, just passing it off as the last remnants of an ear infection and cold. It was in my 40s that I experienced the real force of regular vertigo, balance problems and having to resign from work. I felt really defeated at first and very isolated. No one seemed to understand how I felt, not even my doctor. Veda provided comfort and advice and over the past 5 years I have managed to gain some understanding of triggers and learned to survive and thrive. As a VeDA Ambassador I hope to raise awareness of vestibular conditions and help other people to believe that things can get better.
Diagnosis: Vestibular Miagraine
I was diagnosed with vestibular migraine in 2012. My symptoms began with dizziness, vertigo and fatigue following a reaction to a medication for another condition. It took a long time to get a diagnosis, and when I did the VeDA information was invaluable. My symptoms finally made sense! A combination of Botox, physiotherapy and lifestyle changes mean that I haven’t had a vertigo attack for several years and the daily dizziness is vastly improved. I started my website, to help people with chronic conditions connect with each other and to share diet and lifestyle tips. As a VeDA Ambassador I hope to improve awareness of vestibular disorders and further build a community of support amongst those suffering with them. Instagram: @throughthefibrofog.
Diagnosis: Vestibular Migraine
11/5/15 I was sitting in a meeting at work when out of nowhere my world started spinning. My life changed in an instant. I went through 2 years battling just to make it through the day. I had to quit the job I loved and dedicate myself to complete self care. Through lots of research, support and lifestyle changes, I have been able to find my new normal. Although I still have some daily symptoms, I am back to the career world, a present mother and wife, and vow to helping others through this debilitating disease. You are not alone!
Diagnosis: Bilateral Vestibular Hypofunction
After being misdiagnosed with labyrinthitis and then bilateral vestibular hypofunction since 2010, eight years later I have now been correctly diagnosed with vestibular migraine and PPPD (Persistent Postural Perceptual Dizziness). I will continue to raise awareness about the damage of misdiagnosis and the importance of educating our health care professionals, through my website (www.curelabyrinthitis.com). I manage my symptoms through Vestibular Rehabilitation Therapy, lifestyle changes and diet.
Diagnosis: Benign Paroxysmal Positional Vertigo (BPPV), Migraine Associated Vertigo (MAV)/Vestibular Migraine, Tinnitus
On April 3 2019 I was hit with horrible vertigo while taking a shower. Two months & many appointments/tests later I was diagnosed with Vestibular Migraine by my ENT. The diagnosis was confirmed by my neurologist a month later. I am now 5 months in and have more good days than bad but still experience 24/7 dizziness.
Diagnosis: Migraine Associated Vertigo (MAV)/Vestibular Migraine
I have been living with vestibular issues for 4 years and have been diagnosed with Vestibular Migraines. My journey started with severe Vertigo after a series of Sinus Infections and RSV. Originally it was thought that I had VN but after treatment with predisone I was called in for testing. It has been discovered that my right vestibular nerve is barely functioning and my left is compensating for the right. I was told I had Meniere's Disease until I sought an Ear Specialist and Neurologist. It's confirmed I have Vestibular Migraines. This took 3 years for a correct diagnosis and 4 years for meds that work...so far. My triggers are stress and changes in barometric pressure. I've learned though that life doesn't stop at diagnosis. I recently just did a climb of 40 floors, 870 steps without getting dizzy!!! There is hope.
Diagnosis: Vestibular Neuritis
I was diagnosed with Vestibular Neuritis in 2011 (a side effect of Dengue Tropical Mosquito Fever caught 30 yrs ago). I do vestibular rehabilitation therapy with a vestibular trained physiotherapist. Sometimes I thought that I would never manage on my own. I've learned to cope, but I still feel wobbly and anxious. Fortunately, I have a wonderful group of support people - I call them, My Treasures! I became a Tai Chi Instructor (Sifu) in 2007. I teach regularly twice weekly in Cairns, Australia. I previously taught Tai Chi as a Martial Art, now I focus on its use to improve balance. I was so happy I had my Tai Chi Training before the staggering began. My best personal balance is when I am teaching Tai Chi.
Diagnosis: AIED, BVH
My life became unbalanced Thanksgiving 2015. I had been feeling off and out of blue woke up with imbalance and loud tinnitus in my right ear. As days past, it just got worse. 5 months & 4 doctors later I was diagnosed with Autoimmune Inner Ear Disease: Cogan’s Syndrome. My symptoms include: Bilateral Vestibular Hypofunction, SSN Hearing Loss (Bilateral), Osciliopsia, and imbalance. If I were given the correct diagnosis in the beginning, it is possible I could’ve saved my hearing. This disease has robbed me of my hearing, my career as an H.S. Biology teacher, my ability to walk, to drive, so many things. But I refuse to let it rob me of my joy and quality of life. That is why I am a VeDA Ambassador to spread awareness, educate, and to advocate on behalf of patients like myself so that a misdiagnosis can be prevented. Autoimmune Inner-Ear Disorder Facebook Group
Diagnosis: Labyrinthitis, Migraine Associated Vertigo (MAV)/ Vestibular Migraine, Persistent Postural Perceptual Dizziness (PPPD)
8 Years ago I suffered from a bought of labrynthitis which left me confused and scared to what was happening inside my head. After many tests and being told it was anxiety, I was sent away with minor excercises to do. I had years of relief but still suffered with migraine occasionally. However in December 2020 the labrynthitis virus hit me again, but this time 10 times harder. My symptoms were out of control and my anxiety rose high as I was at a great time in my life wanting to move forward with goals. It was such a shock to my system to take a huge step back and from going to 90 mph to doing nothing. Slowly throughout the beginning of 2021 after hospital appts I had some answers and I met with an amazing vestibular therapist called Rachel canning. I'm finally getting better, slowly but surely!
Mount Bethel, PA
Diagnosis: Vestibular Migraine
Like so many others, my vestibular condition presented itself as quite a surprise and has changed everything about my life. At just 34, healthy and ambitious, aside from some migraines, I just awoke one day with vertigo and nausea. I spent many years after that getting increasingly worse and seeking different professional advice. The episodes of dizziness became an all day plague of feeling "off" and having difficulty concentrating, remembering, or staying awake. I eventually found my way to VeDA and to some competent therapists, but not before I was forced to leave my job and stop driving almost entirely. Seven years since onset of symptoms, and I have gained much control over my symptoms. I always said that if I felt well enough someday I would help others get through this awful disorder and mow I am here to do that!
Hello! My name is Pavan and I am a medical student and researcher, with plans to become an academic otolaryngologist in the future. I am currently on a research year investigating human plasma biomarkers for diagnosing and managing vestibular migraine. As this year progresses, I hope to supplement my academic forays with advocacy and policy opportunities with the vestibular disorder community--and after an illuminating conversation with David Morrill, I realized VeDA is a perfect way to get involved! I hope to learn as much as I can from the community and serve as an advocate and committee member!
Houghton Lake, MI
Diagnosis: Vestibular Migraine, Meniere's disease
I was diagnosed with Meniere's Disease (bilateral) 17 years ago, as well as MAV. Over the course of these years, I lived and worked with these disorders, and functioned pretty normally most of the time. At the end of 2016, my hearing started changing. Life was like hearing through cracked speakers. I started getting vertigo daily and was off balance. I ended up having to go on short-term disability from a job that I loved, which later turned into long-term disability. I was devastated. The impact that vestibular disorders can have on a person can feel unbearable. I want to be on the Ambassador Board so I can help educate others on vestibular disorders, as well as coping mechanisms to help overcome the challenges associated with these diseases.
Diagnosis: Vestibular Migraine
Story "in a Nutshell": In 2008 I woke up one morning with the worst vertigo I have ever had. Although it only lasted a few short minutes, it was enough to change my life forever. I still remember being told by many specialists along the way that this was just anxiety and migraine. I have had migraine since I was around 14 so they were nothing new to me, now in my 30’s I am a chronic migraine warrior, but I am still on my vestibular journey. Support from my amazing online Instagram community and a special friend I crossed paths with recently has encouraged me to reach out to VEDA to become an Australian ambassador. If I can be a light for just one person, I am doing something right to advocate for this chronic illness.
Diagnosis: BPPV, Vestibular Migraine
After suffering from imbalance and bouts of vertigo since the age of 10, I was diagnosed with BPPV at age 25. A few years and many specialists later I was also diagnosed with Vestibular Migraines. I am happily married with 2 beautiful children and live every day with hope that it will be better than the day before. I am passionate about educating myself about vestibular disorders and hope to help further research and therapies for them if at all possible.
Diagnosis: Migraine Associated Vertigo (MAV)/ Vestibular Migraine, Vestibular Neuritis
In October of 2016, I experienced symptoms of dizziness that I would later find out would lead to a diagnosis of Vestibular Migraines and Vestibular Neuritis. I was hopeless when I was first diagnosed and thought that my life was over, but after keeping a proactive mindset and attitude, my diagnosis continues to improve. I became an ambassador because when I was diagnosed, I felt alone. None of my family or friends were familiar with my disease and I had no one who could empathize or relate. I joined VEDA in hopes to help educate and share stories about vestibular disorders with society, but ultimately, I want to reach individuals that were recently diagnosed to let them know they are not alone. I blog about my experiences here: www.TrueKaylaisms.com
Diagnosis: Migraine Associated Vertigo (MAV)/ Vestibular Migraine, Central Vertigo
My life with Vestibular Migraine started with a bang seven years ago. I was reading my emails at work one morning when all of the letters on the screen scrambled up. I remember thinking how weird that was and then I was falling out of my chair. I was taken to the hospital and underwent many tests for stroke, heart problems, and several other things. Fortunately all of those tests came back fine. The hospital referred me to a neurologist who ordered many more tests. The final result was a diagnosis of vestibular migraine. I have tried several medications over the years. Some have helped and some haven't but I don't ever give up hope. Vestibular migraine has impacted every part of my life. I am excited to be able to help spread awareness about vestibular disorders!
Diagnosis: Central Vertigo, Cervicogenic Dizziness, Migraine Associated Vertigo (MAV)
In December of 2017 I woke up in the middle of the night with vertigo; the “rocking and rolling bed”. After many doctor visits, tests and treatments, the dizziness and off-balance sensations continued. It has become a chronic condition. Finally I saw a neurologist who recognized my symptoms as Vestibular Migraine and Cervicogenic Dizziness. The most challenging part of this disorder has been the isolation. I’m divorced with grown children who don’t live close-by. Living alone and having to quit my job teaching made this challenge all the more difficult. Finding VeDA was a game changer! I feel connected to people who understand and are supportive. Thank goodness for this group! I will try and contribute what I can to give back.
Diagnosis: Mal De Debarquement, Vestibular Migraine, PPPD
My nightmare began March 2018 after a week long family vacation on a cruise ship. After a week of being home, I knew something was wrong when my "land legs" didn't return and I was beyond exhausted. I wasn't bouncing back fresh and rejuvenated from a week off the grin in the Caribbean as I had from prior cruises. As a healthcare provider I researched the possibilities and starting making appointments with ENTs and neurologists. I had a list of working diagnoses for over one year and saw many specialists before I was able to get definitive answers. I was firts diagnosed with MdDS. During the first year of having MdDS, an invisible disorder, life threw me multiple curve balls increasing stress which lead to vestibular migraines, tinnitus, and hyperacusis. My MdDS symptoms wax and wane. I now fall somewhere in the MdDS/PPPD loop given the day, weather, and my personal activities.
Diagnosis: Vestibular Migraine, Mal de Debarquement
Hello. My name is Joni and I am diagnosed with Mal de Debarquement Syndrome and Vestibular Migraine. I have had dizziness problems over the past 11 years and just last year figured out what was causing my symptoms. I am finally on the path to wellness that I've been looking for! In my professional life, I am a pediatric physical therapist and provide vestibular rehabilitation to children with vestibular dysfunction due to a variety of diagnoses. I am excited to be a part of VeDA's mission to improve awareness and education of vestibular disorders!
Danielle is a physical therapist who specializes in vestibular rehabilitation. She has been practicing for 9 years and has attended various continuing education seminars on dizziness/balance disorders. Danielle is employed at FYZICAL Therapy & Balance Centers, and she also teaches vestibular therapy at a local college for a physical therapist assistant program. Danielle is a member of VeDA’s Patient Education Committee, assisting in creating and providing educational materials to other professionals and the community.
Broken Arrow, OK
Diagnosis: Bilateral Vestibular Hypofunction/Ototoxicity/Tinnitus
In 2010, I developed total BVL from Ototoxicity, at age 17. Suddenly, I had this 24/7 ringing in my ears, I couldn't walk or stand, my field of vision would violently shake at the slightest head movement, and I had so many more unpleasant symptoms. It was a nightmare I never thought I would wake up from. VEDA helped me find answers, and almost 9 years later, with continuous VRT, psych therapy and lots of support, I am much better. I still have a long way to go, but I am optimistic of my future, and will keep fighting for it. As an ambassador I want to continue to help raise awareness, and to help, support, and inspire other vestibular warriors to keep fighting. You are not alone!
Palm Coast, FL
Diagnosis: Cholesteatoma, Perilymph Fistula
My diagnosis came earlier in life. During a routine doctor's appt my mother was informed that I had a Cholesteatoma in my left ear. I had 2 surgeries in an attempt to remove the Cholesteatoma and repair the damage caused. By the age of 8yr I lost 2 "hearing bones" and 30% of hearing (left ear). I had frequent ear infections growing up, but did not realize I had a rare disease. New Year's weekend I had a bad migraine that left me feeling unbalanced and not myself. Several episodes of vertigo, the room would flip or tilt. I went to a walk in clinic and they referred me to an ENT, they discovered the Cholesteatoma reoccurred. Part of my mastoid bone was destroyed and resulted in a horizontal canal fistula. I have constant tinnitus, struggle with balance and struggle to be "normal". And unexpected stress will throw me "off balance".
Diagnosis: Vestibular Neuritis and Migraines
I have been living with a Vestibular Disorder for 11 years now. I was first diagnosed with this at age 36, when I lost my balance, equilibrium, and had many visual disturbances. I am also a Registered Nurse (cannot work as one anymore though). I know, especially when you first get sick how difficult it is , not only on your personal life (career, money, family member stress) but just trying to navigate through the medical system to get help, is a taxing effort at best. I decided to become a VeDA Ambassador to bring awareness to this diagnosis and to help others get the help they need!
Diagnosis: Migraine Associated Vertigo (MAV), Vision Disorder including Binocular Convergence Insufficiency (BCI), Benign Paroxysmal Positional Vertigo (BPPV)
I posted a blog and my Facebook friend David Morrill, Chairperson of the Ambassador Board, encouraged me to be a member. I want, through my blogs, to share my experiences living with a vestibular disorder to help people, including the medical community, understand. I hope that better understanding will help raise awareness about these conditions. You can follow Tamar's blog here: http://visiblepersoninvisibleproblem.blogspot.com/
Delray Beach, FL
Diagnosis: Meniere's disease
It was in 2011, during my senior year of college, when the vertigo first started. After suffering for nearly six months, I was finally diagnosed with Meniere’s disease. But as I began to research my illness, my heart sank. I was sure my life was over. So much of the information I found filled me with terror. VeDA, however, proved to be a light in darkness, providing me with everything I desperately needed to know. After a long struggle, I have finally been able to take back my health, and now have set out to help those still suffering as a VeDA Ambassador and through my website: http://www.mindovermenieres.com. There is ALWAYS so much hope; never give up.
Diagnosis: Meniere's disease, Migraine Associated Vertigo (MAV)/ Vestibular Migraine
I was diagnosed with meniere's disease in 2013. The struggle is real and impacted my life in devastating ways. I lost jobs, friends, and family. In 2020, I rode an e-bike 1400 miles to raise awareness and funds for research. Upon completing my journey, I wrote a memoir of my experience titled "On the Vertigo" available on Amazon. I now plan for another trip in September of 2021. I consider myself an adventure awareness warrior. I will never give up. Peace out!
Richmond Hill, ON
Diagnosis: Vestibular Neuritis
Hello. I am Elaine and my journey with a vestibular disorder began in June 2018 when I woke in the middle of the night to the room violently spinning. I was initially misdiagnosed with BPPV and kept doing the Epley Maneuver with no success. I was growing frustrated, especially when I was unable to return to work. By the fall of 2018, with my condition getting worse, I developed extreme anxiety and depression. It was during that time that I found a support group on Facebook and I couldn't believe how many people had vestibular disorders. I also received the correct diagnosis of vestibular neuritis. Seeing other people successfully living with their various conditions was one of the greatest motivators for me to get well and back to the business of living and loving life again. I began to write short encouraging posts and shared them on the group page with good feedback. I decided then to start my own facebook page and blog, called "The Dizziness Diaries," where I try to encourage others living with a vestibular disorder. Blog • Facebook
Diagnosis: Migraine Associated Vertigo (MAV)/ Vestibular Migraine, Persistent Postural Perceptual Dizziness (PPPD)
I had been having bouts of spontaneous vertigo for a few years, nothing debilitating. On January 5th I collapsed in my home and taken to the ER. They said I was fine. A few weeks later I was diagnosed with vestibular migraine and assumed PPPD. I have never been the same since January 5th, I have symptoms 24/7. I believe there is hope and I will get my life back. Connecting with others in the community has saved my life. Instagram
San Antonio, TX
Diagnosis: Migraine Associated Vertigo (MAV)/ Vestibular Migraine
Hello! I'm Karen and I'm an alcohol industry professional living with Vestibular Migraine. I was diagnosed in March 2019 after 18 months of searching for answers to the dizziness and growing list of debilitating symptoms I was experiencing. I was relieved to finally have a diagnosis that fit and encompassed all of my issues with actual options for treatment. I was even more relieved when I started connecting with the online vestibular community and receiving support from my peers. Adopting the "Heal Your Headache" diet was one of the best things I ever did for my recovery. Like most folks in my line of work, Covid 19 completely changed everything for me careerwise. During quarantine, I started a blog (@tartt.drinks on Insta, www.tarttdrinks.com) where I write cocktail recipes for folks with ingredient sensitivities just like us. I'm on social media @tartt.drinks.
I am a physical therapist and "Vestibuloholic." I developed an educational version of a 3D printed model of the vestibular organ for patient and clinician education and founded Vestibular Today, a website dedicated to sharing interesting patient cases, educational videos, and vestibular-related research. I bring my passion for raising awareness about vestibular dysfunction and imbalance out into the community by giving free presentations at senior centers and local organizations. I am proud to be an active VeDA Board Member. I also serve on VeDA's Legislative Advocacy, Medical Advocacy, Virtual Conference, and Professional Development Committees.
Diagnosis: Vestibular Migraine (MAV)
Hi my name is Johan, also known as the CHAPPINESS Guy. I am a son, a husband, a father, and a friend. Last year in April 2019 I woke up early one day with my whole world turned upside down. I had the most surreal symptoms imaginable (dizziness, vertigo, visual disturbances, headache, neck pain, anxiety, fear, tremors, etc.). After MANY different doctor visits I was diagnosed with Vestibular Migraines. It was a difficult diagnosis to accept but it has helped me grow and become a better person. I am closer to God than ever before, I appreciate life, family and friends and I've made some new amazing "Vestie" friends. I have also embarked on the mission to raise awareness and provide community support. If I could summarize my experience in a few words they would be "we are stronger together and Find Your CHAPPINESS guys." Check out my YouTube Channel here: FIND YOUR CHAPPINESS
Los Angeles, CA
Diagnosis: Labyrinthitis, Ramsay Hunt syndrome
Well into my 3rd year as a medical student, I woke up one morning unable to get out of bed, the world spinning around me. After spending some time in the hospital with Ramsay Hunt syndrome and an associated labyrinthitis, I've been recovering my vestibular sense. Though it has been less than six months, this experience has been a life changing journey! I truly did not understand how difficult it is to live with a balance disorder. While challenging, I'm grateful to have had this experience. As a result, I've transitioned my career path and am now pursuing otolaryngology to support and take care of patients with similar problems.
San Diego, CA
Diagnosis: Cervicogenic Dizziness, Migraine Associated Vertigo (MAV), PPPD, Vestibular Neuritis
Hi, I am Ashley! Although I have dealt with two head injuries and a slew of chronic and invisible illnesses most of my life, my vestibular journey didn't officially start until 2018 when I had a pinched nerve in my neck and woke up a few weeks later with vertigo. I have never felt the same since before that day. Since then, I have seen roughly 15 medical specialists to find out why I still feel "vestibulary." I have VN, VM, CD, PPPD, tinnitus, and Atypical Peripheral Vestibulopathy. Although I am still learning and looking for root answers while feeling constant symptoms, I have learned to cope a lot. I recently learned about VeDA through my vestibular therapist and a few inspiring ambassadors on social media. After all I have been through, I know my purpose is to help others going through their journey. You are not alone! Website
Diagnosis: Bilateral Vestibular Hypofunction, Labyrinthitis
In December 2018 my world was literally turned upside down. I became seriously unwell in the blink of an eye and spent months struggling to get a diagnosis and then many more months on the long and turbulent path to finding a way to live with my condition, to find my new 'normal.' It happened when a virus got into my inner ears. It was a simple cold virus, but it irreversibly damaged my vestibular system. I didn't even know I had one until this happened! My symptoms are crippling vertigo, nausea, fatigue, tinnitus, and anxiety. Due to my vestibular disorder being bilateral, my brain has had to learn to compensate using my vision and my proprioception. It has taken immense hard work and constant vestibular rehabilitation therapy to achieve some compensation, although I do still have flare ups and can decompensate for short periods of time. I am, however, so blessed to be in a position where I am functioning well enough to allow me to do some of the things that I love again. Running has without a doubt been my best therapy. To start with it would take me a week to recover from my short runs. Now I feel better when I'm running than when I'm not! I think that getting out into nature is vital for healing and it's made a huge difference in my recovery. I started a Facebook group to support and inspire other runners with vestibular disorders and I have an Instagram page where I've connected with other people who are trying to fight their way back to some sort of normal life. I get messages almost daily and I'm so happy to be able to give advice and help others now. I am currently training to run an ultramarathon next summer. Facebook Group • Instagram
Diagnosis: Migraine Associated Vertigo (MAV)/ Vestibular Migraine, Vestibular Neuritis
Hey y’all! I’m Alicia and I was diagnosed with vestibular migraine (MAV) in 2017, a diagnosis that changed my life. I went from being a fun-loving, world-traveling 30 year old to never leaving my house. I was newly married and thought my life was over. It took a few months for me to find the right neuro-otologist and the right treatment plan for me, but in the past 2 years I’ve become stronger than I could have ever imagined. Through the Heal Your Headache diet, vestibular therapy (VRT), key supplements, and ballet, I’m back to living life to it’s fullest. I started The Dizzy Cook, a diet and lifestyle website for those with migraine and vestibular disorders, as well as their family and friends. I share the recipes and tips that have helped me get my life back in the hope that it will help others in some small (or BIG) way! Website • Facebook
Oak Park, IL
Diagnosis: Migraine Associated Vertigo (MAV), Meniere's Disease, Tinnitus
I have had increasingly disabling Meniere's disease for over 20 years. I miss consistently helping other people, being super reliable, working, and driving. I miss the parties our friends and families have in the evening. I have devised ways to dwell in joy and gratitude. I like being an Ambassador because it allows me to help people in my area and all over the world. I am grateful for my family and friends. I am grateful that I have a team of doctors who recognize that I know a lot about my condition.
*Prior nonprofit board experience is not required. Ambassadors are encouraged to support VeDA through donations and/or fundraising.
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