I came down with severe vertigo in August 2016. I was hospitalized for six days. Fortunately, one of the physical therapists had been trained in vestibular rehab therapy. Not only did she provide twelve weeks of therapy that restored my balance, she directed me to VeDA on my initial visit.
VeDA has been a tremendous resource for me. It has provided educational resources that has helped me understand my condition. I have also been able to use these materials to help educate my general practitioner. VeDA has provided support through its quarterly newsletter, On the Level, as well as its monthly e-newsletter. Both newsletters include stories of others who have vestibular conditions, which provide comfort and support in that they reassure I am not alone with these symptoms. They also discuss triggers that can activate the symptoms, so that I can better manage my condition.
In addition, when I developed lingering symptoms that local doctors could not diagnose, the information on the website led me to a specialist at Duke. Not only was he able to diagnose my condition, he gave me a treatment plan that resolved many of my issues.
For these and other reasons, I have found VeDA to be a lifeline as a person who has entered the dizzy land of vestibular disease.
VEDA is an invaluable resource for fact based Vestibular disorder information. The information from this site helped me get the proper diagnosis and ultimately helped me regain my life. My Vestibular disorder was very frightening and confusing. VEDA’s easy to read handouts helped me understand my illness and to formulate important questions to ask my doctors.
VEDA is wonderful! As a vestibular patient who was unable to walk, I am SO thankful for all of their important information, Facebook Live presentations, and social media posts. Additionally, I learned more from VEDA than my own specialists at times. We are a special misunderstood niche with an "invisible" disorder that's difficult for others to comprehend. Thank you VEDA for giving us hope!
My balance is completely off due to my vestibular system. What makes it even worse is the vertigo that does not go away. I did take medication however, I was allergic and a very itchy rash was from my scalp to my ankles.
I did go to physical therapy which my insurance approved only 20 sessions per year.
This is not sufficient. I do the exercises at home which takes much time. I stay at home a lot and cannot go a lot of places with my friends. Sitting down I am fine, lying down I am fine and driving my car I am also okay. As soon as get up my vertigo kicks in. My doctors are not helpful. Physical Therapy will do the epily maneuver (not sure of spelling) but the one time it was done I was sick for 4 days. They say that is the only thing that will help.
I really am miserable.
This organization is finally shining a light on the complexities and enormous difficulties experienced by people with vestibular disorders. My diagnosis (40% dysfunctional left inner ear vestibular nerve) was given over 35+ years ago, and I still suffer from it's disabling symptoms today. Just the fact that research is being done, and remedies are being sought has been uplifting to my spirit. Doctors in past decades (even specialists) had no effective medical tools to help patients, which has been very demoralizing. It is a disease that is now in the category of disability, but was not considered such during my working years. Struggling to meet the demands of employment when (vertigo, disequilibrium and drop attacks) would occur spontaneously and often without warning, became so difficult. I was fortunate to have a 'progressive' employer, who allowed me to be the first employee in that corporation to telecommute from home in the mid-80's. This disease has enormously diminished my quality of life.
for the last year i was wondering why i felt this way. i knew it had something to do with my neck injury, because i felt "weird" as soon as i had the trauma. i dealt with it and thought i just had vertigo, all the symptoms were there after doing research. i digged deeper and came upon this veda page and i was like .. THATS IT. all the symptoms matched up, from the dizziness to the lack of concentration. i questioned my neurologist who i had seen at the time of injury, and also saw upon returning to work with the same symptoms and came to the conclusion that it was vestibular. im relieved i know what it is but not sure if i can live the rest of my life with this. ill keep you posted
I was diagnosed with a terrible vestibular disorder called Meniere's disease back in 2011, and for a long time everything seemed hopeless. I had a terrible doctor and so much of what I could find online only made me feel worse...
Except for VEDA. The Vestibular Disorders Association was my one source of hope and good information in those early days.
Unfortunately, vestibular disorders are not widely understood by both patients and doctors. VEDA exists to correct this imbalance by educating doctors and empowering patients to advocate for themselves.
Navigating the waters of a vestibular disorder is a terrifying ordeal, but thanks to VEDA, we don't have to do it alone.
Veda has become my second family, helped me with education, knowledge, support and friendship and not being alone. I became a Ambassador to help spread the word about this terrible disease, but always refer back to Veda because they are such a awesome group of people that care.
I was diagnosed with a vestibular disorder, and this organization is amazing in providing information! There is a member forum where you can ask questions to people that have your disability. I was so impressed with this group, that I became an Ambassador. I highly recommend this organization! Lorna Paterson
Awesome organization!!! Very informative. A one of a kind organization that will help people with balance disorders. If it wasn't for this organization I would still be going from Doctor to Doctor to get some of the help I've gotten from VEDA. Education/knowledge is power. Join today, you won't regret it.
What happens when a therapist needs therapy? We quickly discover, we don't know it all! After a long period of floundering with the aftermath of my diagnosis with Labyrinthitis in 2002, VEDA quickly became my lifeline. Their information and reference material have been priceless to me, after feeling isolated for many years. I recently became an Ambassador for VEDA and want to thank VEDA for their support, pulling me out of a very deep hole!
From the time I discovered VEDA, it's been my go-to for information about treatments, lifestyle changes and practitioners. That first year, I became a member and have made a donation annually.
The one thing that doctors routinely fail to do is to provide information. A diagnosis is the start of a new life. VEDA, among other things. fills that informational void.
My go-to whenever I need a new practitioner or when I need to help a friend who has a vestibular disorder. All of the disorders are somewhat amorphous - they cannot scan inside your ear so it is hard to find the exact diagnosis. This site is filled with terrific medical information. It also highlights others experiences so that you know you are not alone. Most importantly I have found the top MDs, PTs and other providers in the US by using this site. Whenever I hear of someone with vertigo, Meniere's, bppv or any other related disorder I know they will find the most reliable information on this site.
My number one go to...especially when I have a bad day and cant understand what is happening to me...the information they provide I cant get any where else...this is what calms me down in my darkest hours !
The Vestibular Disorders Association website was one of the first online resources I found when I needed information on balance challenges following a concussion. Their website is easy to navigate, it contains a wealth of reliable information, and I was able to learn a lot about vestibular problems in a short time. It's like 'one-stop shopping' in that the educational materials are plentiful and excellent. I am hugely appreciative of the efforts the staff and doctors put in to create all of the resources. It's difficult enough to have medical challenges, this group provides an outstanding service!
In a period of three short months four years ago my life completely changed. Raging vertigo lasting seven hours and more, pulsating tinnitus, hearing loss, and sensory sensitivities that I had never encountered, nor could have imagined. Who can imagine what a broken vestibular system feels like when all your life it had supported you flawlessly. I was sent to doctor, after doctor, and then I also started researching for myself and found VEDA online and finally all the pieces came together to complete one picture: Meniere’s I had a vestibular condition called Meniere’s. From that day on VEDA became a constant resource of support and encouragement. VEDA was a beacon of light at a very dark time and for that I say sincere thanks VEDA. Judy McNamara Tripp
After 18 months with multiple misdiagnoses, I was on a mission to find my problem. After hearing about VEDA, and reading all the research and articles posted, I knew exactly what My condition was. That has since been confirmed through proper diagnoses at Johns Hopkins, that I have VM, secondary BPPV and possibly CSD. VEDA is constant source of valuable evidence based research, new potential treatments and the emotional support that we all so need!
VEDA publishes information on current research for people with vestibular disorders. One study correlated low Vitamin D with the onset of BPPV in postmenopausal women. I showed the info to my medical doctor, she had my level tested and found it low. So with Vitamin D supplements and monitoring of my Vitamin D levels, I have been symptom free for a year and a half. This correlation was shared with my vestibular physical therapist who has been sharing with her patients. VEDA is able to be a clearinghouse of current research and information to help those with vestibular problems. I am grateful to the organization for giving me a way to control, but not cure my BPPV. Thank you. I donate to this organization so that others will be helped.
The informational material that is provided online by VEDA has helped me to understand the complexity of the vestibular system and the difficulty of obtaining a diagnosis. The information from VEDA has been a great help to me in accepting and living as best I can with my undiagnosed disorder. They have done a great service.