It has been over 14 years since I first became dizzy and off balance. It has been a hell for all of the years and I am still suffering. At first after visiting a doctor supposedly well known for dealing with all forms of dizziness and ear problems, he thought perhaps an operation would help. I refused and went on my way to Mayo clinic in Minneapolis. After another battery of repeated tests they were just as confounded as the first doctor and after staying 5 days with each day more tests, the only thing they could offer was more physical therapy. I agreed and came back home to again do more physical therapy. It was fruitless. After more doctors and doctors, I have come to the conclusion that I either have M.S. or a slight case of Parkinsons or some case of auto immune disease. When I tell this to my primary doctor he thinks I am way off because I look so healthy and exercise and eat all the right foods and etc. etc.Never smoked or drank too much so why am I dizzy? Veda has not been able to help me.I am off balance every day as soon as I get up untill I go to bed. This is hell. I am going on 89 yrs. take no medicine, just vitamins and as you may now know as soon as you get into the eighties, forget it the doctors figure you've had enough time and now lets look to the younger groups. This is my story, I have given in the past so many times and received nothing in return . I have had all the advice I can handle. I do not drink but I am drunk every day until I go to sleep. This is what Vestibular Disorder feels like!
Incredible organization that helps so many people stricken with vestibular disorders. My teenage son has Vestibular Migraines and PPPD and VEDA has helped us immensely with providing information and support. I don't think we could have found the right diagnosis, or Alex's current specialists, without them. Alex has made great strides in his recovery and is now a pediatric ambassador to help other children and teens who struggle with vestibular conditions.
Life of a Teenage Vestie:
I stumbled on VIDA while looking for more information about vestibular issues, hearing loss and horizontal canal fistula. This organization is a wealth of information for those struggling with any vestibular disorder. Their articles and live presentations offer the help that is needed. I hope that more awareness of these disorders will help bring an understanding to the public and also more funding for research to provide help for these disorders.
When I suffered vertigo attacks and then unrelenting balance challenges, VeDA was a lifesaver. They offered support, education, resources and a sense of hope. For many months the people I "met" online through this organization were my only contacts who understood what I was going through. I'll always be grateful and indebted to this great group.
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.
In a word: remarkable. I have suffered from Meniere's disease for over 25 years. It has many symptoms, but the worst is random debilitating vertigo attacks. At my wits end, VeDA was a lifeline to not only others who shared my experience, but medical professionals who could truly help. One of the biggest issues facing people with vestibular disorders is the lack of understanding by the general medical community due to the difficulty diagnosing vestibular disorders. VeDA helps people cut through that so they can more quickly get to the critical help they need in managing these conditions. After all they did to help me, I joined the board for five years to help repay, in some small part, all VeDA did for me.
I am a vestibular physical therapist, treating people with dizziness and balance disorders for 3 decades. VeDA is the champion of education and support for people with vertigo symptoms who's life is literally spinning out of control. Answering questions like "what's happening to me?", and "what do I do now?" are VeDA's specialty. I direct all of my patients (and those who care for them) to VeDA so they know they are not alone, and others have walked the same road before them. Vestibular healthcare providers may provide clinical remedies and treatment strategies, but VeDA provides an empathic community for the patient via support groups, and science-based info we as healthcare professionals cannot always make time for during office visits. Across platforms, (printed materials, website, and social media) VeDa is working to make Vestibular Visible, and help people on their journey back to balance. It's a great organization, highly regarded by vestibular professionals and patients worldwide. Kathleen Stross, DPT, PT, MS, CHC
I was referred to the VEDA (Vestibular Disorders Association) website by a friend after experiencing vertigo and being unable to get a diagnosis or treatment. The VEDA organization was a wonderful source of information on vestibular disorders as well as a great way of making a person feel that they are not alone. After looking through information provided by VEDA, I came to realize that many vestibular patients do not receive a diagnosis for many years and that these disorders are not well known or understood by either the health care community or the general public. VEDA offers hope to patients that this will change.
I've been connected with VeDA now for over 16 years. I am not exaggerating when I say that VeDA was essential to my accepting and learning to manage my vestibular disorder. The patient education materials, patient support groups, and provider resources have been critical in my self-care. I became a volunteer and then a board member to give back to this amazing organizationl
This organization is a wealth of information for those struggling with any vestibular disorder. Their articles and live presentations offer the help that is needed. I hope that more awareness of these disorders will help bring an understanding to the public and also more funding for research to provide help for these disorders.
My first experience with VEDA was in 2012 after my 14 year old son suffered a concussion in 2011 that progressed into complete loss of function due to debilitating bouts of vertigo, loss of balance, and dizziness. Thankfully, I found them as they were the ONLY source of knowledge to the general public of how concussion so frequently can result in these issues. If I had never found them, we would still be trying to find a doctor knowledgeable about these issues. We learned that he had permanent vestibular nerve damage in his left ear.
That was back in 2012. Fast forward to this August...I got a concussion that brought on all of these same issues. Having the experience with my son, and the knowledge VEDA provided, is allowing me to get proper treatment much earlier that I hope will result in less time unable to function normally.
I can't thank VEDA enough!!!
Helped me with quality information on my vestibular disorders as well as find friends and doctors that knew about it and could help me!! I got my life back now!
I was introduced to VeDA through one of the Vestibular support groups.
I have found their resources an invaluable part of my vestibular journey.
Because this organization has done so much for me and meant so much to me, I have become a volunteer myself so that I can be a help to others lost within the chronic illness maze and show them the way.
The Vestibular Disorders Association is a remarkable resource that I use every single day with my patients who suffer from vestibular dysfunction. They provide the the most up-to-date information on the latest treatments, resources, and support.
When I first realized I had a vestibular disorder this organization was there to help me navigate my extremely difficult journey. Their knowledge of these little known disorders was lifesaving to me and many others. For a small nonprofit they certainly deliver big results, thank you for being there when I needed it most.
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.
Vestibular Disorders Association has been a wonderful resource during my struggles with a vestibular disorder, they provided me with the knowledge and help I needed, gave me support, and helped me realize I wasn’t alone, and that I could get better. I am so grateful for all VEDA has done and continues to do.
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
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.
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!!
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.
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!
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!
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!
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.
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!
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.
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.
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.
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.
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.
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: email@example.com). 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.
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!
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!
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.
The Patient Support Coordinator is fab! She will spend as much time as necessary. And free! Highly recommend and have become a donor.
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.
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.
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.
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.
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!
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!
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: firstname.lastname@example.org.
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.
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.
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