Over 1.8 million nonprofits and charities for donors, volunteers and funders

2018 Top-Rated Nonprofit

Vestibular Disorders Association

5,679 pageviews

Nonprofit Overview

Causes: Ear & Throat Diseases, Ear & Throat Diseases Research, Health

Mission: The mission of the Vestibular Disorders Association is to inform, support and advocate for the vestibular community.

Results: VEDA has helped millions of vestibular patients find hope and validation through our educational resources and support groups, and put patients on the road to recovery by connecting them with qualified vestibular specialists.

Target demographics: vestibular patients

Direct beneficiaries per year: 4 million people learn about their vestibular disorder and connect to a qualified vestibular specialist

Geographic areas served: the United States and abroad

Programs: information, education, support and advocacy for the vestibular community.

Community Stories

50 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 4

I am a 72 year old male, retired college professor. I have always been very active. On February 26, 2018 everything changed. That night I had a sudden, violent episode of spinning vertigo followed by intense vomiting. My wife called 911 and I was taken to the ER. After three MRIs and two CAT scans, nothing was found. I went home but I was unable to do much. Thankfully, the severe vertigo hasn't returned. I went to an ENT for tests. Nothing was found until I had a KNG test. It showed a 55% loss of function of my right inner ear balance nerve. I was told that it was likely caused by a virus infection. During the following year I had appointments with an ENT specialist and a neurologist in the Dallas, TX area. My diagnosis is vestibuIar neuritis and PPPD. I did go for special PT but that didn't help me. I was told to do as much strenuous activity as I could to build my strength and to improve my other senses. I was prescribed Zoloft and that has helped with the anxiety that is always there. I never feel right and share the same problems that others have described. I was told that there is no "cure". I function better after a good night's sleep and a day of rest between strenuous work days. I walk about 2 miles every other day, mow my yard, do gardening work and I have decided to start playing golf again. Even though I won't be able to play well anymore, at least it gets me out and socializing with friends who understand my situation. I hope to live an active life but I know things will never be exactly the same. We have to continue with life even when it is difficult. Good luck to all who experience these mysterious, vestibular problems.

Client Served

Rating: 5

I am a retired 68 yr old woman. I heard about this site from my therapist Denise Schneider who has been treating me for vertigo. I had been having trouble with this condition for several months while lying in bed and turning on my right side. I felt like I was rolling off a cliff, and my balance was off. I did not know one could be treated for my type of vertigo. So, I saw Denise several times and she put me through specific movements and I have to say that it worked ! Mine seems to be positional at this time and so was treatable. I have not had it happen except once since treatment and then I had a session for that and it has been gone now for over two months. I am now studying this website and finding lots of good information to keep handy in case I need it in the future. I will also be quick to recommend people seek help for this condition! I no longer worry about not being able to drive! I am grateful to Denise at Doctors of Physical Therapy in Schaumburg, Il.

General Member of the Public

Rating: 3

My dizzy spells have been coming on for the past two years and my NP at the VA finally sent me to the Neuro Doctors and then to the ENTs then to the eye Doctors and now I’m a the list to go back to the ENTs, this has been going on from June until now nine months and at this point I started research on my symptoms and told the Doctors that I think I have Central Vestibular Vertigo and or Menieres and that was a surprise to them after all this time and now they will get back to me.

I was put on Gabapentin and that made it so bad I had a had time walking and fell down a lot I hurt my shoulders so bad I went to the ER at the VA and everyone was very sorry that I keep falling, next my head started hurting so bad I was back in the ER and the Doctor said you just have a headache and he gave me Mrclizine and just one dose put me out for one complete day.

In spite of the fact that I had given my NP all my symptoms in writing for over a year the VA has not comeback with a final diagnosis, well that’s the VA for you I think that the VA expects me to dye of a fall and then it will be all over.

Is there any medication that helps with Meniere's so I can start the VA Doctors off in the right direction because it looks like the VA Doctors don’t have a clue about Menieres. I did talk to a Vet. That had Meniere's and it took them ten years to diagnose it and put him out on a medical.

Comments ( 1 )

profile

vestibularVEDA 02/14/2019

Your story is not uncommon. Vestibular disorders are very difficult to diagnose, especially for primary care doctors, but even for some specialists. Since you are a veteran, I suggest that you check out the resources VeDA has for vets and active service members (https://vestibular.org/military). Contact us and we can help you get connected with a vestibular healthcare specialist (phone: 800.837.8428, email: info@vestibular.org). Here is some information about Meniere's: https://vestibular.org/menieres-disease. The medications used to treat this disease are generally meant to be short-term, for acute attacks only. The main treatment is lifestyle changes such as a low-sodium diet. Other interventions can include surgery to reduce the fluid build up in the inner ear. You mentioned central vestibular vertigo, which is very different from Meniere's (Meniere's affects the inner ear, whereas central vertigo affects the nervous system). Getting an accurate diagnosis is key.

Board Member

Rating: 5

I first found out about VeDA many years ago when I was a treating full time as a physical therapist. I quickly discovered that VeDA's resources are outstanding for patients and clinicians alike. I was so impressed by their work, I joined one of their committees about 5 years ago and have recently joined their board. Throughout my many exposures with everyone involved with VeDA, it is clear they are committed to making a difference in the life of those impacted by vestibular disorders. They strive to advocate, educate, and raise awareness through all that they do. A small group of amazing staff members has been able to achieve so much! It is clear everyone involved with the organization is passionate about their mission!

Holly F.2

Board Member

Rating: 5

When I was diagnosed with my vestibular disorders I felt overwhelmed and alone. I did not know anyone with a similar illness and I did not know how to cope. I was so lucky that my doctor handed me an article about my condition from VeDA - the Vestibular Disorders Association. From there I found the VeDA website and found so many critical resources to help me like - scientifically-based research articles explaining how my cognitive issues were related to my disease (not to me going crazy!), a director of providers who specialize in Vestibular disorders, and connections to other vestibular patients going dealing with similar challenges. I am SO GRATEFUL for all VeDA has done for me!

General Member of the Public

Rating: 5

I had an episode of a spinning room when I got out of bed one morning in a hotel. I was alone. It was scarey! I found a physician to treat me. The materials on the VEDA website were an excellent resource, but I joined as a member because their newsletter is outstanding and value received for the small membership fee is well worth it.

Michelle E.2

General Member of the Public

Rating: 5

The Patient Support Coordinator is fab! She will spend as much time as necessary. And free! Highly recommend and have become a donor.

2

Client Served

Rating: 5

When I was diagnosed with inner ear nerve damage by several specialists I was basically given no information or treatment, I was just told to "wait" and see what happened. Yes, "wait". Never mind that I was too dizzy to walk, drive, work or take care of myself. Somehow I found VEDA and learned what my test findings meant, what possible therapy might be available to me and that I was not alone. There were support groups, provider lists, detailed descriptions of different diagnoses of similar sets of symptoms, other patient accounts of how they navigated through life after diagnosis. I also learned how to minimize and manage symptoms as much as possible, local resources and general knowledge that I could handle this. I really am so appreciative of this organization which was so helpful to me at the lowest point of my life. I have referred others to VEDA knowing that they will also find help.

Donor

Rating: 5

Even before I joined VEDA, the information they provide to the public is super helpful. Lists of possible conditions are very comprehensive. Since I joined VEDA, I’ve been provided with even more support for my condition. Emails, newsletters and opportunities to meet at support groups have been sent my way. It is a great organization for people with medical conditions related to dizziness, who feel isolated, misunderstood and at times hopeless. VEDA makes you realize you are not alone and that there is always hope.

2

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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!

General Member of the Public

Rating: 2

I expected this site to give news in the diagnosis and treatment of this disorder. I only found ways to donate. What a waste of time!

Comments ( 1 )

profile

vestibularVEDA 02/14/2019

I'm sorry you did not find VeDA's Educational Resources helpful (https://vestibular.org/educational-resources). I encourage you to contact VeDA directly so we can get you connected to articles, support and healthcare providers you need. Phone: 800-837-8428 or email: info@vestibular.org.

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 4

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

9 Glenn S.

Volunteer

Rating: 5

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.

4 Kelly193

Volunteer

Rating: 5

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.

4

General Member of the Public

Rating: 5

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

4

Client Served

Rating: 5

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.