Encuentro de Salud Vestibular: Experiencias de Médicos y Pacientes Encuentro de Salud Vestibular: Experiencias de Médicos y Pacientes es un evento virtual de dos días que le brinda entrevistas con expertos vestibulares y un panel de personas que discuten sus experiencias vestibulares. Presentados por pacientes y defensores vestibulares Darilys Matos Acevedo y Johan Galeano, entrevistarán a los invitados sobre cómo discutir estas condiciones invisibles y por qué es tan difícil obtener un diagnóstico preciso. Mírelo en vivo el 26 de Abril y el 10 de Mayo a las 11 a.m. PDT/2 p.m. EDT/8 p.m. CET para aprender, charlar y hacer preguntas. ¡Te veo allí! Día 1 – Cómo comunicarse con sus proveedores de atención médica sobre sus síntomas/experiencia vestibular. 26 de Abril de 2024, 11 a.m. PDT/2 p.m. EDT/8 p.m. CET VER EN LINEA Los síntomas vestibulares pueden parecer imposibles de describir. ¿Es balanceo, giro, desequilibrio, aturdimiento, vértigo… o simplemente […]

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VEDA - Published Mon Apr 15 2024 19:32    View Full Story...

By Wendy Holliday Bledsoe and the Vestibular Disorders Association One day in 2016 Melinda woke with a stiff neck. She’d been painting a ceiling the day before and thought that she’d recover quickly as she’d always done before. However, the next day at work she didn’t feel well. “During a morning meeting I could feel something very odd happen. I could almost hear a whooshing sound,” Melinda says. “My mind and vision had difficulty focusing. When I got up to leave the meeting and I started to move, my surroundings felt like they were spinning.” This episode of vertigo marked the beginning of Melinda’s vestibular disorder journey, which would significantly alter her life. From Therapist To Patient Before her condition Melinda worked as an Occupational Therapist. She loved helping people with mental and physical disabilities, injuries, and illnesses regain independence in their daily lives. However, constant bouts of vertigo made […]

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VEDA - Published Mon Apr 15 2024 18:00    View Full Story...

Mal de débarquement syndrome (MdDS) is an under-recognized and little-understood chronic vestibular disorder primarily characterized with a phantom sensation of oscillatory self-motion or gravitational pull. MdDS typically onsets after prolonged exposure to passive motion of a transport vehicle, and is associated with a failure to readjust to a stable environment after adapting to being in motion. MdDS can be difficult to treat, but the chance of a positive outcome has improved recently with the discovery that a central vestibular function, known as velocity storage, may be ill-adapted in patients with this condition. Velocity storage is a center of multimodal sensory integration that contributes to eye and postural reflexes and spatial perception. As such, a visual-vestibular therapy technique aimed to correct the spatial orientation action of velocity storage is becoming recognized as an effective treatment for MdDS. However, this treatment may not prevent subsequent symptom relapse triggered by re-exposure to prolonged […]

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VEDA - Published Fri Apr 12 2024 21:50    View Full Story...

Mal de Debarquement syndrome (MdDS) is a rare type of vestibular disorder characterized by a feeling of constant movement in the absence of motion. Movement can be experienced in the form of rocking, swaying, bobbing, or a pulling sensation. Although symptoms get better with passive motion (i.e. when you are a passenger in a car or on a boat), they can return after the passive motion ends. Symptoms may be triggered by motion (MT-MdDS) or occur spontaneously without motion (SO-MdDS). Other aggravating factor are exposure to busy environments (i.e. grocery store, airport), visual stimuli (i.e. computer use, phone use, video games), and fatigue. The diagnosis criteria described by the International Classification of Vestibular Disorders is as follows: perception of continuous, non-spinning vertigo lasting a day; onset within 48-hours after passive motion is experienced; symptoms resolve temporarily after experiencing passive motion; and symptoms last greater than 48 hours. Undoubtedly, MdDS negatively […]

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VEDA - Published Mon Apr 8 2024 15:30    View Full Story...

December 17, 2019 I stepped onto a cruise ship in Portugal to sail across the Atlantic. On December 27, following ten days of rough seas I stepped onto the docks in Miami. I didn’t know it then but Mal de Debarquement Syndrome was going to become part of my daily existence. Over the next 12 months as I searched and hoped for a cure that would return me to normal… I had a sinking feeling that I would never travel again. Although grateful for previous adventures, I grieved over the loss of future travel plans to Europe, Africa, maybe even Antarctica. Traveling Again We had a trip to Portugal planned for 2022 and we decided not to cancel but to give it a try. If it didn’t go well, then I would have to accept that traveling was going to become a thing of my past. My husband Steve convinced […]

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VEDA - Published Wed Mar 27 2024 21:24    View Full Story...

What is the placebo effect? First described in the early 1900s, the placebo effect is defined by Oxford Languages as a beneficial effect produced by an inactive drug or treatment that cannot be attributed to the properties of the intervention itself. This effect has been shown to be prevalent in many different conditions, affecting many different symptoms. The placebo effect typically has the most impact on patient-reported metrics like survey responses and symptom reporting. Signs of disease like those found on a doctor’s examination or imaging are less likely to be affected. This is also layered with a component of time. The more time that passes, the weaker the placebo effect. Placebo in Clinical Trials In practicality, the placebo effect most often gets discussed in the context of clinical trials (scientific research involving patient subjects) where new therapies like medicines and surgeries are being investigated. It is used to control […]

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VEDA - Published Mon Mar 18 2024 19:11    View Full Story...

By Karen R Mizrach A frustrating aspect of vestibular disorders is the tendency for recovery to move in an up and down pattern rather than a straight upward path. We work hard to take care of ourselves, follow medical advice, do our physical therapy exercises and avoid known triggers. Yet even when we seem to be improving, setbacks often occur. Setbacks Are Temporary This discouraging pattern can cause us to feel like we are back at the beginning of the journey, not having made any progress. But that is not the case. Vestibular Physical Therapist, Beth Wagner, likes to call these setbacks “speedbumps.” She says, “They can be of any size and any length (like an elongated speed table), but they are temporary.” Temporary setbacks are a normal part of the symptom cycle. You’re Still Past Square One A recurrence of vestibular symptoms may feel like being thrown back to […]

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VEDA - Published Fri Mar 15 2024 18:00    View Full Story...

There’s an app for that. Mobile apps focused on health and fitness help users track their physical activity, monitor their diet, set fitness goals, and access workout routines So what does an app designed for vestibular patients do? It depends. There are several options out there. Some have been developed by researchers to collect data while also supporting patients’ ability to track their symptoms, and others have been developed by patients themselves who wanted to give back to the vestibular community. This article is not an exhaustive list of apps developed with vestibular patients in mind, but it will give you some options to choose from, depending on what your goals are. Vertige Vertige was created by Vestibular Migraine and Meniere’s patient, Kristy Carabello. During her recovery journey, Kristy began tracking her symptoms and triggers on paper. “I began noticing patterns and identifying triggers that exacerbated my symptoms, such as […]

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VEDA - Published Fri Mar 15 2024 15:08    View Full Story...

By Brenda Washington, LMSW, ACSW – Macro and Micro My name is Brenda and I am a long-time volunteer with VeDA. My current position is on the Diversity, Equity and Inclusion Committee. After a recent meeting I decided to do research on how patients might feel more empowered in the medical setting, particularly in the doctor’s office. When I worked as a medical social worker and psychotherapist I saw a lot and advocated many, many times on behalf of injustices. Even with my support, I found that patients and clients who had family and social support had better outcomes. While I was doing research for this article, I experienced anxiety. Thoughts that came up for me included, “We never know if we’re ever getting the BEST treatment,” and “With routine follow-up appointments there’s a concern that something may be missed.” With chronic issues I can’t stress enough the importance of […]

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VEDA - Published Wed Feb 28 2024 00:16    View Full Story...

Gut Health A Holistic Approach to Diet & Lifestyle By Emily Englert, NTP – Seattle Holistic Nutrition Incorporating a balanced diet, mindfulness practices, and personalized lifestyle changes can contribute to a healthier gut. By nurturing our gut, we pave the way for improved digestion, enhanced immunity, and overall well-being. On a personal note, nourishing my gut gave me the ability to take control in the chaos of my vestibular condition.  I learned that I have the power to support health in my body.  It wasn’t an overnight fix, but rather a way to slowly but surely move through my vestibular condition and create chronic wellness rather than feel like I was drowning in symptoms. Understanding the Gut Microbiome The gut microbiome refers to the diverse community of microorganisms, including bacteria, viruses, and fungi, residing in the gastrointestinal tract. This complex ecosystem plays a crucial role in digestion, nutrient absorption, immune […]

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VEDA - Published Mon Feb 26 2024 21:17    View Full Story...