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2019 Top-Rated Nonprofit

Vestibular Disorders Association

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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

62 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 1

i spoke to this organization and read their site and each time it is less and less helpful
but it's very soon for them to ask for money when they offer little to no help as to what to do to get better they focus more on how to apply for social security, they cant suggest any treatment . I mean even trainers and HIV Centers send you to somewhere the Gays really Got on Hand and Action Sites these people have nothing because they dont' really participate with many valuable places, their articles go on forever setting you up for doom and long term feeling sick rather then better. on the phone they are very nice but you can tell it's all protocol as to not to give you any sense of direction everything i have found to resolve all my issues has been somewhere else, there are many youtube videos and exercises for vestibular rehabilitation available , but they don't use those either , I was even asked to join their group on facebook when i was telling the person on the phone it made me worse and it' s no surprise that their group there is a-lot of failure long term stories , while in the Dizzy group there are more success stories because it was started by someone who is a survivor and has left Vertigo behind , Awareness is nothing without solutions and that is the missing link , as long as they lack help or solutions and get some professionals on here this site is worthless, i even spoke to the Plasticity organization and they offer more then this Veda Does , My Physical therapist down the street offered a-lot more information, while people who are desperate may feel real honored for this site. I feel nothing I have to give credit to Nicole thanks for her personally lending me an ear but that's all I know she is a volunteer and even asked If I wanted to be one, but I would never I like to offer solutions solutions solutions , I awareness is cheap I hate this place just like many others who teach their employees to learn a script and that is all you get frustrated , I have and will always be number one in customer service because I don't sugar coat things , this org is a waste , so sorry for those suffering who come here. for help

Client Served

Rating: 5

Being a dizzy Dutch 40-somewhat-year-old-woman, I was so happy to discover more info on vestibular topics on the internet.

I got educated and therefore I could inform my family and friends. And maybe reach other vestibular patients through them.

This helped me a lot, also emotionally.

Susan Fouts B.

General Member of the Public

Rating: 5

I still have a lot of symptoms from VN, and going on almost 2 years. I've improved a lot with lots of PT and continuing PT at home. I have 100% vest. nerve damage in right ear, which is why I think it's taking so long. I've had lots of ups and downs, but am still improving at times. But, I've learned so much from this group that has made my recovery even better. They do give hope, when we sometimes feel there is none. I'm still plugging along with my recovery, but when I see someone new I try to encourage, just like others have done for me. Thank you so much for this sight!!

Client Served

Rating: 5

I was diagnosed nearly twenty years ago with multiple sclerosis. Having severe issues with not being able to see my feet or surroundings in the dark...leading to dizziness, disorientation, and falls were my most disconcerting symptoms that led me to a neurologist. I have long since learned that I have to be a self-advocate. I am a team with my doctors. I have to bring in 'evidence' such as journals and specific circumstances. If I do not explore, if I do not question, I will not get what I need. I discovered VEDA last year, when I had a horrific vestibular migraine that led to several very bad panic attacks. I researched...wow... this is beyond being dizzy, this is not acceptable to live this way, (you know all the feels when you are desperate). I found VEDA through online articles and blogs with Dizzy PT. Just knowing others feel this way helps me cope with this. Also it is a resource for very concrete things one can do. People will sometimes self-stigmatize and just go NOWHERE because it feels disorienting and they feel they are looked on and judged. These days, at times, I'll get dizzy and lose my equilibrium, even when it is not dark, and sometimes fall. Yes, it is embarrassing. Yes, I have bad days. Organizations such as VEDA help me get through them.

General Member of the Public

Rating: 5

I was initially misdiagnosed with BPPV. When it wasn't quickly 'cured' by therapy, I was given a second diagnosis of Vestibular Neuritis. After 2 months, it was determined I had permanent damage to my left inner ear. At the end of 3 months, I was defeated, financially depleted, and still sick!! All the while, 3 inexperienced Doctors discouraged me from reading up on VN, BPPV, PPPV, MD or join fb groups, etc. Apparently, there is a fear that you can make your Vestibular Disorder worse by being informed!! Through VEDA, I found links to videos to treat visual vertigo ( shadows and light could send me into a spell ), DAVT, and other adaptive measures that ended up helping me tremendously. My VT was great ( Docs- not so much ), however it was VEDA that gave me hope, a measure of control in my recovery, and taught me to advocate for myself! I hope through VEDA, all med professionals will find access to training for this horrible misunderstood illness!

General Member of the Public

Rating: 5

Veda provides such an extensive array of support, information and connections for those of us on the journey with Vestibular challenges. I discovered Veda while researching online for any information to help me deal with a disability that is not very well known by many in the medical field. Veda provides a wealth of information and helps to feel you're not alone. My favorite is the "Talk Tuesdays" with Bridgett Wallace, DPT from 360 Balance & Hearing Center. Thank you Veda!

General Member of the Public

Rating: 5

Very useful, valuable info when I was diagnosed with vestibular neuritis and had no idea what it was. They also make it so you feel so much less alone and have hope again. Thank you to this wonderful org and all they do!

Client Served

Rating: 5

When I found VeDA I had been suffering with vestibular symptoms for almost a year. I was lonely, afraid and without hope for improving. Doctors seemed confused by and uninterested in my condition. Finally I found VeDA and began to learn about this disorder. I joined online support groups they suggested and began finding answers to this puzzle of a disorder. The resources, support and information VeDA supplies to vestibular patients and their families is invaluable. I owe so much to them as I move forward and learn to live with my health challenges.

Client Served

Rating: 5

This organization helps countless people get their life back. After receiving no answers or options from doctors for months, Veda helped me get the answers I needed to get me on the road to normalcy. They offer a great new patient kit and help finding the right doctor to make a diagnosis. Not only that but you get a road map and continued education to help you cope with a life changing diagnosis. Not sure what I would have done without them.

General Member of the Public

Rating: 4

The Vestibular Disorders Assoc was very, very helpful and useful to me especially when I was first searching for credible, reliable information about migraine symptoms which had diversified into other complicated symptoms. I think I learned aboutthem through the World Migraine Summit. I was soo happy, relieved and grateful! For the first time I could ask questions and actually get reasonable answers! It was a pleasure to donate to VEDA and continue to hear about new research, solutions and helpfull information! THANK YOU VEDA!

Client Served

Rating: 5

People who are affected with vestibular disorders are often confused and misdiagnosed. There are so many variations and symptoms that make it difficult to advocate for yourself. VEDA provides the tools, experts, and research to assist you in this complex struggle. They also provide support and group events to help people know they are not alone with this condition. Since connecting with VEDA I have made new contacts and gained a better understanding of my condition. If you know anyone struggling with vestibular issues or caretakers of vestibular patients, please connect them with VEDA soon.

Kayla M.6

Volunteer

Rating: 5

VeDA is a great resource for people with vestibular disorders. They provide education, access to doctors and have introduced me to a community of people with diseases similar to my own. It’s such a relief when you’re diagnosed with a vestibular disorder to know that you’re not alone. I love that VeDA works hard to educate the community to help those who have just been diagnosed and to help spread awareness around invisible illnesses.

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.

1

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 )

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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 )

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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.

Professional with expertise in this field

Rating: 5

Outstanding resource for professionals and patients !!

2 Margaret76

Professional with expertise in this field

Rating: 5

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!

1

Donor

Rating: 5

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.

Donor

Rating: 5

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.

3

Client Served

Rating: 5

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 !

3

Client Served

Rating: 5

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!

2 Judy155

Donor

Rating: 5

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

2

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 4

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.

1

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

2 Jon_32

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

3

Donor

Rating: 5

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.

4

Donor

Rating: 5

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.

1 David256

Volunteer

Rating: 5

I suddenly became disabled by a disabling balance and dizziness condition caused by complications of a stroke. When I turned to this organization they were so supportive and informative. They inspired me so much I decided to give back and now volunteer for this great organization. I would highly recommend this to anyone who suffers from this type of disorder.

2

Client Served

Rating: 5

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?

2

Client Served

Rating: 5

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.

Comments ( 1 )

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vestibularVEDA 10/02/2014

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

1

Volunteer

Rating: 5

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.

1

Donor

Rating: 5

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.
Susan Papa

1 Debbie131

Client Served

Rating: 5

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.

Comments ( 1 )

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vestibularVEDA 08/07/2014

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

Client Served

Rating: 5

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.

Board Member

Rating: 5

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.

1

Volunteer

Rating: 5

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.

1

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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

Board Member

Rating: 5

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.

Sally T.

Client Served

Rating: 5

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