My special guest today is Lisa, we had such a lovely conversation despite some internet issues on my side, it didn’t stop us from going off topic many times. Before we jump right in, let me share a little about Lisa. Her first symptoms began in 2004, they disappeared until 2019 where she experienced another episode, then was diagnosed in 2021 when the symptoms returned. She longed for information and connection from people living with Meniere's. Over time, she began to understand we can learn to manage our symptoms and more importantly our outlook, while we learn to care of our physical body. She believes we can learn to live more positively with gratitude, humor and compassion. Today, Lisa sells on-air advertising for 4 radio stations and digital advertising in real life. She has a theatre background and BA in Art. She just became a grandmother last week, for the very first time! Congratulations Lisa!! Lisa is also a VeDA ambassador and will be on the patient panel for "VeDAs 3rd Virtual Vestibular Conference" on March 6th -10th

If you would like more information or to reach out to Lisa, please find her:

Instagram

Her website

If you would like to reach out to me, Heather Davies, please find me on Instagram or email me at [email protected]

If you would like more information on vestibular disorders, please go to the Vestibular Disorder's Association website.  I would like to thank you for listening and if this episode resonated with you, please take a moment and share this with a vestibular warrior or family member of a warrior. Be sure to like, share and subscribe to Meniere's Muse for updates. 

Thank you for being here!

See you next week warriors!

(I would like to apologize for the incorrect dates on Lisa journey in the video, the dates here in the description are correct.)

This episodes conversation is with Kristy Carabello, she lives in Philadelphia with her husband, Nate, and their Cavapoo, Lucy. She was diagnosed with Meniere’s Disease and Vestibular Migraine in 2017. After experiencing 8-10 debilitating vertigo episodes a month, she began tracking her activities on paper noticing trends with her triggers and episodes of vertigo. This compelled her to look for an app to assist with tracking, when she was unable to find one for vertigo, she created one!  Vertige! In this episode she shares in more detail about her new app "Vertige" which was created for those with vestibular symptoms, it even prepares reports that can be shared with practitioners, to assist develop a personal care plan. SO EXCITING!!!

Like many of us, Kristy experienced so much anxiety around her vertigo that she stopped doing many of the activities she loved. Over time she found that movement and meditation helped tremendously both physically and mentally. She is a certified yoga teacher and Reiki Master Practitioner and shares these practices with others and hopes to help more vestibular warriors bring balance back to their mind, body and soul. Kristy recently became a VeDA Ambassador and is excited to be volunteering on the Communications Committee. SO exciting!!!

If you had a take away or something that really resonated with you, please reach out on social media and be sure to tag us. If you haven’t left a review yet, let us know how you like this podcast or any constructive feedback is also welcome. I absolutely LOVE hearing from you and knowing what is resonating with you in the community.  Thank you for listening.

If you would like to reach out to Kristy, please click on links below:

Vertige

Instagram

Facebook

Twitter

LinkedIn

If you would like to reach out to myself, Heather Davies, please reach out on Instagram or feel free to email me at [email protected]

For more information on vestibular disorders please visit the Vestibular Disorders Association at VeDA

See you next week warriors!

Welcome, in this week's episode I am talking with someone who shares her vestibular journey that started when she was just 18 years old, Julia Savoia. This is art 2 of a two-part special, if you haven't heard the first episode, you may want to go back and listen to that one first.  Let me share a little about Julia. She moved to the U.S. after graduating college in Poland with her Bachelors Degree. Here she met her husband and decided to make the U.S. her, home. Today, she is the mother of identical twin 4 year old girls. She was struggling with multiple chronic illnesses and noticed that nutrition was one of the most effective ways for her to manage and improve her overall health, which led her to becoming a certified holistic nutritionist through the AFPA, she hopes to improve the lives of vestibular warriors through dietary change and support.

In this conversation we touch on these and a few other topics:

~ Loving yourself, coming to terms with Meniere's, the work involved in healing, showing yourself grace, love and compassion

~ Journaling, social media, affirmations

~ Vestibular rehabilitation therapy, grounding, healthy food being triggers

If you would like more information or to reach out to Julia, please find her on Instagram.  If you would like to reach out to me, Heather Davies, please find me on Instagram or email me at [email protected]  Be sure to subscribe, share and follow for further updates and future episodes.

If you would like more information on vestibular disorders, please go to the Vestibular Disorder's Association website.   I would like to thank you for listening and if this episode resonated with you, please take a moment and share this or any of the other episode with a vestibular warrior or family member of a warrior. Be sure to like, share and subscribe to Meniere's Muse for updates. Thank you for being here!

I’ll see you next week warriors.

Welcome, in this week's episode I am talking with someone who shares her vestibular journey that started when she was just 18 years old, Julia Savoia. This is Part 1 of a two-part special of a beautiful conversation.  Before we get started  let me share a little about Julia. She moved to the U.S. after graduating college in Poland with her Bachelors Degree. Here she met her husband and decided to make the U.S. her, home. Today, she is the mother of identical twin 4 year old girls. She was struggling with multiple chronic illnesses and noticed that nutrition was one of the most effective ways for her to manage and improve her overall health, which led her to becoming a certified holistic nutritionist through the AFPA, she hopes to improve the lives of vestibular warriors through dietary change and support.

In this conversation we touch on these and a few other topics:

~ Rotational vertigo, tinnitus, anxiety, panic attacks, drop attacks, ear pressure and fullness

~ Birth control, hormonal changes, becoming pregnant with the symptoms and mom guilt

~ Types of journaling, learning to love yourself

***TRIGGER/CONTENT WARNING*** From Minute 14.36 to 17.36.  There will be a verbal warning BEFORE she shares about a drop attack and the graphic details surrounding it. PLEASE SKIP to THE SECOND BLUE SQUARE to move past this clip, if hearing this may be a trigger.  Thank you.

If you would like more information or to reach out to Julia, please find her on Instagram.  If you would like to reach out to me, Heather Davies, please find me on Instagram or email me at [email protected]  Be sure to subscribe so you will be updated when Part 2 of her journey is shared.

If you would like more information on vestibular disorders, please go to the Vestibular Disorder's Association website.   I would like to thank you for listening and if this episode resonated with you, please take a moment and share this or any of the other episode with a vestibular warrior or family member of a warrior. Be sure to like, share and subscribe to Meniere's Muse for updates. Thank you for being here!

I’ll see you next week warriors.

Welcome, many of you may have heard his story, at the very least his mission, if not, let me share with you a little about Steve Schwier.  Steve's life as a heavy equipment operator and professional musician came to a screeching halt, when he began experiencing tinnitus in 2011, later being diagnosed with Meniere's in 2012. He had no idea it was the beginning of a new life. A life that is now disabling on many levels. The onset of chronic dizziness, vertigo, nausea, hyperacusis, nystagmus, loss of balance and the emotional roller coaster that left him lost in the world of vestibular disorders.

3 year ago, he decided to fight back and in a way that captured the attention of many.  He created "On The Vertigo",  a non profit to raise awareness and funds for research. This has included two 1,400 mile bike adventures, successful golf outings for research and many other projects to raise awareness. He even co authored a book “On The Vertigo” with his brother, Dave. He was also a cast member on the  "The Life Rebalanced Chronicles" docuseries, sponsored by VeDA and produced by Unfixed Media.  On top of all this, he also has a podcast called "On The Vertishow" co hosted with Adrienne Smith and produced by his brother Dave.

If you would like to reach out to Steve, please find him on Instagram, Facebook or the links above.  If you would like to reach out to me, Heather Davies, please find me on Instagram or email me at [email protected].  If you would like more information on vestibular disorders, please go to Vestibular Disorder Association. I would like to thank you for listening and if this episode resonated with you, please take a moment and share this with another vestibular warrior or family member.  Be sure to like, share and subscribe to Meniere's Muse for updates. 

I'll see you next week warriors.

Today I have the pleasure of speaking with Joy and Marissa. They are vestibular migraine patients who met in a support group having an instant connection through the similarities in their journey. Joy and Marissa share the same diagnosis, doctor, and even some of the same meds! Both women had worked prior to their illness and were searching for purpose and wanted to provide other vestibular patients with hope.

Joy and Marissa share the same passion to advocate for the vestibular community and help others navigate their illness. They are both ambassadors with VeDA  The vision for their series, “Finding Joy in Your Vestibular Migraine Journey” is to help other vestibular patients find joy and hope in their vestibular journey through sharing their personal experiences, as advocates for the vestibular community, helpful information and resources from VeDA  will be shared throughout the series. Find Joy in your Journey!

If you would like to reach out to me, Heather Davies, please email me at [email protected] or Find me on Instagram

If you would like to reach out to Marissa or Joy please click on the links below:

YouTube

Instagram   Living With Vestibular Migraine

Instagram   Joy & Marissa

Facebook Vestibular Support Group:  Meeting Every Thursday at 7pm Central

Facebook -  Marissa's Page

Twitter

Spotify

If you would like more information on vestibular disorders, please go to the Vestibular Disorder's Association website.  I would like to thank you for listening and if this episode resonated with you, please take a moment and share this or any of the other episode with a vestibular warrior or family member of a warrior. Be sure to like, share and subscribe to Meniere's Muse for updates.  Thank you for being here!

I’ll see you next week warriors.

This week I am talking with Veena about her vestibular journey with Vestibular migraine, persistent postural perceptual dizziness that began in 2012. Like many vestibular warriors getting accurately diagnosed was a challenge, especially when her symptoms went away for months only to return stronger after her pregnancy, along with anxiety, depression, loneliness, and disequilibrium. Today, Veena volunteers spreading awareness about vestibular disorders as a VeDA Ambassador and shares her unique story of finding herself through the challenges of her vestibular symptoms.

This was an enlightening conversation where we discussed these and many other topics:

~ Which came first the anxiety or the vestibular symptoms

~ Symptom journaling

~ Leaning on other warriors

~ Trial and error with medications

~ Botox injections

~ Her struggle having COVID during her pregnancy

~ Learning to walk again with a vestibular disorder after a medically induced coma

~ Understanding your triggers

If you would like to reach out to Veena, please find her on Instagram.  If you would like to reach out to me, Heather Davies, please email me at [email protected] or on Instagram

If you would like to reach out, please see the show notes for our email addresses, websites or find us on Instagram. If you would like more information on vestibular disorders, please go to the Vestibular Disorder's Association website.  I would like to thank you for listening and if this episode resonated with you, please take a moment and share this or any of the other episodes with a vestibular warrior or family member of a warrior. Be sure to like, share and subscribe to Meniere's Muse for updates.

I’ll see you next week warriors.

This episode will be part two in a 2-part series of a heartwarming conversation with Nicolle about her vestibular journey.  If you haven't heard the first episode, I would recommend listen to that first. Nicolle has partnered with the Hearing Health Foundation and Vestibular Disorders Association (VeDA) where she donates her time and art to benefit their fundraising initiatives. Her fluid abstract works explore the relationship between sound and life, inspired by her sudden unilateral hearing loss in 2017. After being diagnosed with several Vestibular health conditions affecting her hearing and balance, Nicolle shifted her creative approach and style to illustrate her experience with hearing loss through color and movement. Her mixed-media technique incorporates soft washes and mark-making to create energetic yet calming multi-layered paintings. Over the course of her artistic career, Nicolle has created several art collections, for the most part, drawn from life experiences. Each particular series consists of works depicting a wide range of emotions and incidents, from life to death, from sorrow and solace to extreme joy, and new beginnings.

Nicolle’s series, The Colors of Sound, explores the relationship between sound and life, an invitation to consider how we make sense of our surroundings through what we can hear. When her partner, a sound engineer, used his recording equipment to display the sound waves and frequencies she was no longer able to hear, Nicolle was inspired to illustrate and ‘capture’ sound visually.

Recently she was featured in Vestibular Disorders Associations (VeDAs) docuseries: Life Rebalanced Chronicles, raising awareness about vestibular disorders. If you would like more information on vestibular disorder's please visit  VeDA (Vestibular Disorders Association). Here you will find more information on balance disorders, diagnosis, treatment, medical professionals, support groups, even a new patient tool kit and so much more. It has been an amazing resource.

If you would like to connect with Nicolle please reach her through her Art & Health Blog, Instagram or click here for her full hearing loss story.

If you would like to connect with myself Heather Davies, please feel free to reach out to me via email [email protected] or find me on Instagram.  If you or someone you know has an inspiring vestibular journey, I would love to speak with them, please direct message me and let's connect!  Thank you so much for being here.

I would like to take a moment and say thank you for being a part of the Meniere's Muses Community. I love to share stories of people making a positive impact in the vestibular community. Your feedback means the world to me. If you haven’t already left a review please do so and let me know what you would like to hear more of on the show. Please be sure to subscribe to Meniere's Muse for updates. Thank you for listening!

I’ll see you next week warriors!

This week I’m sharing part one in a 2-part series of a heartwarming conversation with Nicolle about her vestibular journey with Meniere’s, Sudden Sensorineural Hearing Loss (SSHL), BPPV, TMJ and Cervicogenic Dizziness that began in 2017.  Nicolle is a Colombia-American Artist and Hearing Health Advocate based in Miami, Florida. In 2017 she suffered from sudden unilateral deafness and an unexpected incident that led to Meniere’s Disease. Nicolle has partnered with the Hearing Health Foundation and Vestibular Disorders Association (VeDA) where she donates her time and art to benefit their fundraising initiatives. As a result of her work raising awareness about hearing loss and invisible disabilities, she was awarded the “Leadership Scholarship by Americans for Arts” in 2018.

Recently she was featured in Vestibular Disorders Associations (VeDAs) docuseries: Life Rebalanced Chronicles, raising awareness about vestibular disorders. If you would like more information on vestibular disorder's please visit  VeDA (Vestibular Disorders Association). Here you will find more information on balance disorders, diagnosis, treatment, medical professionals, support groups, even a new patient tool kit and so much more. It has been an amazing resource.

If you would like to connect with Nicolle please reach her through her Art & Health Blog, Instagram or click here for her full hearing loss story. If you would like to connect with myself Heather Davies, please feel free to reach out to me via email [email protected] or find me on Instagram.  

If you or someone you know has an inspiring vestibular journey, I would love to speak with them, please direct message me and let's connect!  Thank you so much for being here. I would like to take a moment and say thank you for being a part of the Meniere's Muses Community. I love to share stories of people making a positive impact in the vestibular community. Your feedback means the world to me. If you haven’t already left a review please do so and let me know what you would like to hear more of on the show. Please be sure to subscribe to Meniere's Muse for updates.

Thank you for listening! I’ll see you next week warriors!