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.
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.