Great resources: The Vestibular Disorders Association
Updated: Sep 22, 2020
You just can’t have a vestibular blog without a shout out to VeDA. The Vestibular Disorders Association is hands-down the best online resource for vestibular disorders. They have been providing advocacy, support, and education to people with vestibular disorders for over 30 years. They are a wealth of information from which both patients and clinicians can benefit. VeDA is a non-profit, with a volunteer board of directors made up of both people who have been affected by a vestibular disorder, and specialists in the vestibular medical field. You can find just about every resource you might need at vestibular.org.
Where to Start
The feature I probably recommend the most is their Healthcare Provider Directory. Navigate to vestibular.org, scroll down until you see "Provider Directory", and click "Locate A Specialist." Or just click here.
This is a great tool because you can simply enter your zip code, and it will provide you a list of all vestibular specialists registered with VeDA in order of how far they are from you. Before I started DizzyPhysio, people living in rural areas, of which there are many here in Texas, would frequently contact me because they needed a vestibular expert, but had no way to get to me. From hundreds of miles away, there was no way for me to help them. I would frequently point them to this tool. Usually, it was able to identify someone at least closer than I was, but Texas is a BIG place, and vestibular specialists are still somewhat rare (although this is improving with increased awareness of vestibular disorders and the success of vestibular rehab!). These people would still have to drive miles and miles to see someone who could help with their dizziness. Not ideal when driving can sometimes exacerbate symptoms. The need for telehealth and mobile services is what inspired me to start DizzyPhysio, and I hope to be able to reach people all over who need help but may not have access to it. The VeDA Healthcare Provider Directory is the best place to get started in finding a specialist near you. But, if there aren’t any, give DizzyPhysio a call.
The second most common thing I use VeDA for is their educational materials and articles. It’s best not to get too lost in all of the information if you are new to having a vestibular disorder, so try starting with the New Patient Toolkit on their main page, and then go from there if you want more. “Toolkit” may sound like something you have to download, but this is just a series of pages and articles with information presented in an ordered way. (Update: you now have to click around a bit, including "Show Full Article" in order to see the information.) Under Educational Resources is where you will find the more detailed information when you’re ready. But all the information is there, including how the vestibular system works in regard to the symptoms it can create, descriptions of different diagnoses, and how treatment and therapy works. The language is easy to understand and does a pretty good job of avoiding nocebo effects, which is when negative expectations and perceptions can contribute to negative effects within the body. Nocebo language is regrettably common in medicine, especially vestibular medicine, so I am always pleased to see VeDA choosing their words carefully in most of their articles. If you don’t feel like reading the articles, VeDA creates some very nice infographics that are quite informative, such as this one: Causes of Dizziness and Vertigo
For clinicians, I recommend becoming familiar with the VeDA website primarily as a resource for your patients, but there’s also a list of upcoming conferences and trainings related to vestibular disorders, and professional membership benefits for those who really want to dive into the vestibular community.
Lastly, VeDA serves the incredibly important purpose of providing support to those with vestibular disorders and their families. The symptoms of vestibular disorders can be scary and impact many different parts of your life that you may not have expected (who expects any of it, really). You don’t have to try to cope on your own. VeDA has so many tools available here!
The New Patient Toolkit helps with getting started and entering into the world of vestibular disorders. Then there’s tools for seeking medical help, like symptom logs, questions to ask your doctor, medical history forms, and the Isabel symptom checker. As a provider, I can tell you that these tools are actually very helpful. I have recommended them to my patients before for helping to organize their experiences to better analyze them, and this results in better care. Then, they have whole articles on coping strategies for different symptoms, including vertigo, nausea, and tinnitus. The coping strategies can work differently for everyone, and part of vestibular therapy can sometimes be finding what works best for you.
Their support network is particularly impressive. They have a tool for finding support groups near you, a list of online support groups that meet regularly via video conference, and, of course, a Facebook group to check out. If you become a member, they have an online message board forum to connect with other members anonymously. These forums are moderated by VeDA moderators, who keep the conversation going by posting discussion topics, articles, resources, etc. If groups aren’t your thing, you can seek individual support from a VeDA Ambassador, or through their V-Pals network of vestibular patients looking to connect directly. They even have a Family Support Network for friends and family members of people who are suffering from vestibular disorders. This is so important, because vestibular disorders can have such a large impact on our function. Loved ones are integral to our recovery and coping processes, so their stress levels and questions are very important to address. You don’t see very many diagnosis-specific caregiver support organizations out there, so this caregiver support network is a really special thing for VeDA to provide. We love and cherish our caregivers, and they deserve some support and attention!
Studies show that sharing and listening to similar stories to your own in peer-support groups can help with coping with an illness. In fact, the effect is significant enough to improve medical outcomes in patients with diabetes, improve disease self-management skills, and increase self-efficacy. (Evidence) So VeDA’s peer support resources are another valuable contribution to the world of vestibular health. However, one thing to be careful about when seeking peer support is misinformation and nocebo language, which are common when vestibular disorders and symptoms are not well understood. Try to remember that everyone experiences vestibular disorders differently, and anxiety and depression are common side effects. Recognize that this is an important outlet for venting those emotions for some people, so as not to get bogged down in other people's pain.
Since VeDA is a non-profit, they rely on donations to keep their services sharp. Nearly all of what they have to offer is free, which is awesome. You can donate any amount, but it takes $40 to get access to the online message board forums and the V-PALS program. It’ll also get you access to On The Level, their quarterly newsletter, which normally has some interesting tidbits of new information in each issue, along with some fascinating personal stories. Professional membership comes with its benefits as well, with additional resources specifically for providers that you can check out here (Resources for Professionals). It’ll run you $130 for an individual provider.
Ultimately, it’s important to keep in mind that the information from VeDA is meant to be generalizable to everyone with vestibular disorders. How vestibular disorders present, even the same diagnosis, can be widely different from person to person because of how our brains are wired. VeDA is a great resource, but they’ll be the first to tell you that they are not a replacement for individualized medical care. I am hoping that by reading my synopsis here, you’ll be able to use VeDA for the helpful tool it was meant to be, and they can continue to increase awareness and optimize outcomes for vesties* everywhere! Thanks for reading!
*The word “vestie” to describe vestibular patients and their allies has caught on at VeDA, which I think is super cute and wonderful.