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.
I have a rare neurological condition called Mal de Debarquement Syndrome (MdDS) and have also been diagnosed with vestibular migraine. VEDA has been a life-line for me and my neurologist has also used their site for gathering information. The information they provide is user-friendly and they post very interesting articles and blogs. If I wasn't busy advocating for people with rare conditions I would certainly volunteer as a VEDA Ambassador. I am so grateful for all they do.
When getting bounced from Dr to Dr trying to get a diagnosis - a name - to thsee bizarre symptoms. To get a diagnosis and look up Meniere's Disease and one definition is different than the next.
To find one spot that not just defines but helps navigate the illness from food to Dr.
It is a one stop shop.
VEDA has changed my life. I had sudden unilateral hearing loss about 3 years ago. I am now 71. The hearing loss included loss of balance and acute dizziness, and sight problems. I had to quit working. 6 months ago I found VEDA. Following their advice, I started physical therapy with a therapist recommended on the site. I had psychological counseling as well. I am working with training a hearing dog. My dizziness is much less and I am improving the balance issue. There is nothing to be done about the hearing loss, but I am adjusting to it as well.
The understanding expressed on VEDA has helped me educate my friends and family. Thank you VEDA.
This organization makes a world of difference in my day-to-day quality of life with both sound, practical information from leading researchers in the field and emotional support so that I feel I am not alone. Vestibular disorders are still so misunderstood, even by physicians and other health care professionals, those of us who struggle with them would literally have nothing if it were not for VEDA! The business end of their work has always been excellent - handling donations, getting emails and newsletter out timely and correctly. I use some aspect of their information and materials every week.
Amazing source of information and support, that I only wish I knew about when I was in the throes of my 10 year vestibular challenges and ups and downs (pre-internet). VEDA has helped me accept my limitations and be at peace with having to adapt my activities accordingly.
I went to work for the Vestibular Disorders Association (VEDA) last week, and I am SO impressed with the level of support provided by this organization to people dealing with vestibular disorders. Like many people, I was not aware of the severity of these chronic conditions - it is often a completely life changing situation, with everything in their life seemingly spinning (often literally) out of control. I am proud to be associated with this small organization that is making such a huge difference in the suffering of these individuals.
I endured 23 years of progressively worsening Meniere's Disease - alone. I knew of no one who could identify with me. My doctors simply didn't have enough information or education about my condition. I think of the years of guessing at treatments while slowing devolving into a shell of the person I had once been. For myself, discovering VEDA came after life-altering destructive surgery, as I was learning how to make my 'new normal' the best possible. I can't find the correct descriptive words to give someone an idea of what emotions I experienced as I devoured the information on VEDA's site. Sadly - I found VEDA on my own as I Googled information that might help me heal. Why didn't my slew of medical professionals refer me? Why didn't they hand me some of VEDA's very consumer-friendly literature? Why didn't I see a flyer in one of the myriad of doctor's offices? These days, I belong to a number of vestibular support groups - and at least daily I am giving their information to someone who feels as lost, confused and afraid as I was. Someone has to help get VEDA out there - why not someone who owes so much of her quality of life to their outreach?
Only organization to help people with vestibular disorders. Saved my life with fabulous information. The information even helped my doctors. Constantly updating and responsive to sll questions.
Thank you so much for your positive review! Your comments will give others hope and confidence to join in our campaign to defeat dizziness. Best, Cynthia Ryan Executive Director Vestibular Disorders Association
I was diagnosed two years ago with Migraine Associated Vertigo - MAV. I found a great deal of helpful information on the VEDA website, both regarding diet, and vestibular disorders in general. I e-mailed info from the site to family members as well, which was also very helpful. I am now very proud to be a VEDA Ambassador Board Member. They are a wonderful organization, helping to raise awareness and to be a resource for information.
I have dealt with 2 vestibular disorders for over 20 years and V.E.D.A. has helped me as much as my doctors have. The information they provide is invaluable. They provide support and information to so many people struggling with balance disorders. I support V.E.D.A. and recommend them to
anyone I know who is struggling with any type of vestibular problem.
I was very sick with sepsis and acute kidney failure and put in the hospital for a week. When I came out and other things were cleared up I was diagnosed with vertigo. That was about a year and a half ago. I thought I was alone until I found VEDA. I found so much info on there about vertigo and found a couple of online groups on their community groups site that helped me realize I wasn't alone. The people in those groups could understand what I was going through. It was a great relief to know there were others who were just like me. I thank God everyday for VEDA.
Thanks for your kind words, Debbie! I'm glad VEDA could provide you with support and information when you most needed it. - Cynthia Ryan, VEDA Executive Director
I have been dealing with a vestibular problem for nearly 11 months now. It is a very difficult health issue to diagnose, treat, and learn to manage. VEDA has lots of resources available to help people like me. Not only do they offer clear explanations of vestibular conditions, they have interesting articles about coping mechanisms and how to live and manage your life with a vestibular condition. The newsletters have interesting articles that have helped me figure out the next steps in my treatment and have helped me feel a little less crazy about all the things going on in my head. VEDA has been a great resource for me--as a website, on their Facebook page, and in their newsletters. They have helped me feel less alone.
As a physical therapist who treats individuals with vestibular disorders, I have found VEDA to be a invaluable resource for patient-centered information that has helped my patients better understand their diagnoses. The provider directory has also allowed me to assist individuals locate providers in their specific region.
VEDA has been very important to me since 1997 when I was diagnosed with a vestibular disorder. At that time there was no information available aside from VEDA either online or in print. Whether it's tips on how to describe my symptoms or clear information on causes, symptoms and treatments or vestibular disorders, VEDA provides the most current, helpful information. The directory of vestibular professionals is also very helpful as well as the patient support groups. Recovering from a vestibular disorder was a long, trying process and VEDA was there to provide support and information every step of the way.
I found VEDA in 1994 to help me cope with a vestibular disorder caused by a perforated membrane in my middle ear. It left me unable to walk due to the vertigo and in bed for months and months. Using the information provided by VEDA, I was able to get diagnosed by the correct specialist and undergo surgery to repair the membrane. VEDA's information about recovery continued to help me stay focused and patient throughout the process and give me hope that I would indeed recover.
My mother has Meniere's disease, which affects her hearing and balance. Once an outgoing and independent woman, she now has difficulty navigating busy public places and can't participate in group conversations, but because she doesn't look "sick" many people think she is just making up her symptoms. VEDA has provided a great deal of comfort and validation to her so that she doesn't feel so alone, reassurance that it's not all just "in her head." I have also learned a great deal about vestibular disorders and feel more compassion for what my mother has to live with.
I have been connected with VEDA since I was initially diagnosed with Vestibular "Neuronitis" in 1986 (pre-MRI; I am allergic to CT contrast medium;). At that time the research and growing body of information available through VEDA helped me to understand the symptoms I was experiencing, especially the varied distortions in my balance the dramatic changes in cognitive processes. VEDA has LITERALLY saved my sanity and self-confidence over the years since the initial onset. That is not an understatement!
In the mid 1980's physicians were largely unaware of symptoms of vestibular disorders. I was fortunate to have worked with an ENT surgeon who quickly pinpointed the likely vestibular origin of my symptoms. However subsequent referrals by my primary care to neurologists brought very unpleasant, pejorative evaluations and allusions to malingering and psychiatric origins.
I believe VEDA has been a major catalyst and leader in furthering awareness of vestibular disorders among physicians, the development of PT reeducation of balance, research to provide further information, support to and from specialists.... so many positive developments in a life-altering yet largely invisible disease process.
I was a highly functioning RN working in the operating room at the time of onset. After 6 months away from work, mostly housebound, much of the time sleeping and regaining a semblance of balance, I found that I was unable to prioritize and re-prioritize without extreme effort and hesitation, unworkable and unsafe for patients. Information from VEDA assisted me in decisions to move to other areas of nursing. And it helped me compensate for chronic disabilities and the accompanying fatigue. It also was a source of reassurance in a few situations when coworkers judged my situation harshly.
I have been fortunate to have been able to learn to compensate or leave behind prior pleasures (bicycling, skiing,) adjust my lifestyle and continue in my profession over the past 25+ years. As I am aging, I experience the subtle decline in balance and abilities to multitask are further challenged by the underlying chronic vestibular disability. PT is a valuable assistance. And VEDA continues to be a source of valuable information. I introduce VEDA to physicians, friends and acquaintances who are experiencing inner ear symptoms.VEDA is worthy of all the support we can muster; the money is well-used and the results are indeed life changing.
Review from Guidestar
As a Vestibular Physiotherapist who has been treating people with dizziness and balance disorders for 20 years, VEDA has been an extremely valuable resource for my patients and my practice. For many years I've utilized VEDA's excellent and reliable patient education materials, their resources for professionals and their Provider Directory to help people find help from vestibular medical professionals in their area.
Now that I am fortunate enough to be on the Board of Directors, I've come to appreciate the hard work, passion and dedication from those 'behind the scenes' and am amazed by how much is accomplished by so few. We are committed to serving and advocating for those with vestibular disorders, with the vision of an international community where vestibular patients are rapidly recognized, diagnosed and treated.
Those with vestibular disorders frequently encounter a lack of understanding and support from their medical, insurance, employment and social communities. VEDA is working hard to change this, so I encourage everyone who has or cares for a person with a vestibular disorder to consider joining and supporting this wonderful and necessary organization.
When my symptoms of Meniere's began to worsen, I found the best information source was VEDA! This organization provides invaluable information for people with the vast array of vestibular disorders. I truly do not know what I would have done, or to whom I would have turned for knowledge, for guidance, for support, if it weren't for VEDA, especially the publications they provide that address just about everything vestibular.
Unless people have already established a relationship with the right kind of physician who can effectively diagnose and treat these diseases, so many of us wander the Earth in agony. VEDA knows these diseases well and provides those afflicted with the tools and resources we need to get moving in the right direction of health.
Thank you to all the people of VEDA! You rock.
Review from Guidestar