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.