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Finding Joy In Your Vestibular Journey
United States
Приєднався 16 вер 2022
Joy and Marissa are both vestibular migraine patients and VeDA Ambassadors. Having so many similarities in their vestibular journey and having a passion to help others in the vestibular community, they started a video series. "Finding Joy in your Vestibular Journey" They hope to bring joy and hope to other vestibular patients by sharing their personal experiences having a vestibular disorder. Please see the link below to VeDA for helpful and up to date resources.
5 Tips to Reduce Stress During Holiday Shopping#vestibular #migraine #holidayshopping #stressrelief
5 Tips to Reduce Stress & Discomfort During Holiday Shopping.
Happy Holidays from Joy & Marissa!!!!
Instagram: joyandmarissa
#vestibular #migraine #holidayshopping #stressrelief
Happy Holidays from Joy & Marissa!!!!
Instagram: joyandmarissa
#vestibular #migraine #holidayshopping #stressrelief
Переглядів: 54
Відео
Avulux- Migraine & Light Sensitivity Lenses #avulux #migraine #migrainelenses #photophobia
Переглядів 292Рік тому
Welcome to this exclusive interview with Andrea Posternack, the Vice-President of Sales at Avulux, the trailblazing company behind the world's only clinically proven lenses for individuals suffering from migraines and light sensitivity. Avulux has revolutionized the way we approach and manage the debilitating effects of light sensitivity, offering hope and relief to countless individuals worldw...
Where are we now? #vestibular #migraine #pppd #veda #dizziness #vertigo
Переглядів 328Рік тому
Join us as we discuss where we are now. We share what is working for us and the struggles we still have to deal with. Joining support groups and becoming VeDA Ambassadors has helped us tremendously in our journey. To find out how to become involved with VeDA: vestibular.org/article/get-involved/ VeDA Resources for Coping & Support: vestibular.org/article/coping-support/
Johan - The Chappiness Guy #vestibular #migraine #pppd #veda
Переглядів 328Рік тому
Meet Johan, “The Chappiness Guy”! Johan is a VeDA ambassador and was featured in the Life Rebalanced Chronicles series. Johan tells us how he became “The Chappiness Guy”, what it was like being in the Life Rebalanced series, and where he is now in his journey. Johan is such an inspiring person to speak to. He brings so much positivity and just makes you smile! "Find Your CHAPPINESS" UA-cam: www...
Dr. Beh - "Disembark Overcoming Mal De Debarquement Syndrome" #vestibular #dizziness #beh
Переглядів 2,8 тис.Рік тому
We had the pleasure of Dr. Shin Beh, MD, FAAN, FAHS @thedizzydoc joining us on our podcast for this episode. This interview was unique because we also had David Morrill on from VeDA, Kimberly Warner from Unfixed Media, and vestibular patients from our support group. Everyone got to be part of the conversation which made for an exciting, super informative interview! Dr. Beh is one of the few neu...
Kimberly Warner- #Unfixed Media- #VeDA Ambassador, #Mal De Debarquement Patient
Переглядів 1,4 тис.Рік тому
Join us as we get to know Kimberly Warner . Kimberly is the founder, director, producer and editor of Unfixed Media. She not only partners with VeDA producing videos but is a patient too. Kimberly shares her own journey living with Mal De Debarquement. We talk with Kimberly about her journey from modeling, producing, becoming a publish author, advocacy, and running a sustainable homestead with ...
New Vestibular Videos Coming Soon!!!! #Vestibular #Migraine #PPPD #Meniere's #Dizziness #Balance
Переглядів 39Рік тому
We are happy to share more videos are coming your way Springs 2023. This year we are joining in Step-2-Balance with VeDA and other Vestibular Warriors. May 21st - 27th, 2023.
Areyana- VeDA Ambassador - #vestibular #migraines #veda
Переглядів 237Рік тому
Areyana is a 19 year old student who is a graphic designer and entrepreneur of her photography business. In March of 2022, her life changed and was eventually diagnosed with vestibular migraine. Tune in to learn how it was being so young and living with chronic dizziness. Areyana is an amazing soul who has not let this illness stand in her way! Instagram: areysdizzyworld UA-cam: ...
Hayley - Vestibular Journey #dizziness #vestibular #migraine
Переглядів 125Рік тому
Hayley - Vestibular Journey #dizziness #vestibular #migraine
Dr Carrie Sypherd, OD with Behavioral Vision, talks about how vision effects vestibular conditions.
Переглядів 360Рік тому
Dr Carrie Sypherd, OD with Behavioral Vision, talks about how vision effects vestibular conditions.
Pat, #veda Ambassador - #BPPV , Chronic #migraine & #vestibular Migraines
Переглядів 120Рік тому
Pat, #veda Ambassador - #BPPV , Chronic #migraine & #vestibular Migraines
Heather Davies- Meniere's Muse #Meniere’s #Vestibular #migraine Migraine Patient & #veda Ambassador
Переглядів 219Рік тому
Heather Davies- Meniere's Muse #Meniere’s #Vestibular #migraine Migraine Patient & #veda Ambassador
Happy New Year - Reflecting on vestibular challenges & looking forward to the future. #vestibular
Переглядів 119Рік тому
Happy New Year - Reflecting on vestibular challenges & looking forward to the future. #vestibular
Dave Giugno "Meniere's Disease Warrior" - "Keeping It Real" #menieresdisease #vertigo #veda
Переглядів 161Рік тому
Dave Giugno "Meniere's Disease Warrior" - "Keeping It Real" #menieresdisease #vertigo #veda
Happy Holiday!! Thank you for your Support!!! Holiday Social Hour on Zoom for Vestibular Support.
Переглядів 56Рік тому
Happy Holiday!! Thank you for your Support!!! Holiday Social Hour on Zoom for Vestibular Support.
Tips for Getting Through the Holidays with #vestibular #migraine & #pppd
Переглядів 254Рік тому
Tips for Getting Through the Holidays with #vestibular #migraine & #pppd
Dana Tress, Vestibular Rehabilitation Therapist & Certified Concussion Specialist, #veda Ambassador
Переглядів 136Рік тому
Dana Tress, Vestibular Rehabilitation Therapist & Certified Concussion Specialist, #veda Ambassador
Tiffany - Vestibular Migraine & PPPD Patient - VeDA Ambassador #vestibular #migraine #pppd
Переглядів 183Рік тому
Tiffany - Vestibular Migraine & PPPD Patient - VeDA Ambassador #vestibular #migraine #pppd
Vestibular Thanksgiving Special -- Fellow Vestibular Warriors #vestibular #pppd #migraine #veda
Переглядів 2392 роки тому
Vestibular Thanksgiving Special Fellow Vestibular Warriors #vestibular #pppd #migraine #veda
Caregivers - Meet Jonah (Husband ) Caring for someone with #vestibular #migraines #pppd #caregivers
Переглядів 1442 роки тому
Caregivers - Meet Jonah (Husband ) Caring for someone with #vestibular #migraines #pppd #caregivers
Symptoms of Vestibular Migraines & PPPD #vestibular #migraine #pppd #dizziness #offbalance
Переглядів 2,2 тис.2 роки тому
Symptoms of Vestibular Migraines & PPPD #vestibular #migraine #pppd #dizziness #offbalance
Travel Tips with Angela #menieres #vestibular #travel #dizziness
Переглядів 2132 роки тому
Travel Tips with Angela #menieres #vestibular #travel #dizziness
Canceling Plans with Friends and Family + The Anxiety That Comes With It - #vestibular
Переглядів 3012 роки тому
Canceling Plans with Friends and Family The Anxiety That Comes With It - #vestibular
The Wins - Vestibular Migraines & PPPD (Vestibular Disorders) #vestibular #veda #dizziness
Переглядів 2962 роки тому
The Wins - Vestibular Migraines & PPPD (Vestibular Disorders) #vestibular #veda #dizziness
David Morrill / VeDA Community Support Coordinator (Vestibular Disorder Association)
Переглядів 1652 роки тому
David Morrill / VeDA Community Support Coordinator (Vestibular Disorder Association)
Marissa's One Year Anniversary After Meeting with Dr Beh #Vestibular #Migraines #pppd #DrBeh #veda
Переглядів 3032 роки тому
Marissa's One Year Anniversary After Meeting with Dr Beh #Vestibular #Migraines #pppd #DrBeh #veda
Finding Your Joy - In your Vestibular Journey #vestibular #pppd #migraine #veda #dizziness
Переглядів 1702 роки тому
Finding Your Joy - In your Vestibular Journey #vestibular #pppd #migraine #veda #dizziness
Intro Video- Our journey with Vestibular Migraines & PPPD (Vestibular Disorders)
Переглядів 3392 роки тому
Intro Video- Our journey with Vestibular Migraines & PPPD (Vestibular Disorders)
VeDA Link to register: vestibular.org/article/s2b/
Can the "elevator drop" or falling sensation happen during sleep?
We have some of the people in our support group mention they have had some vestibular sensations at night while sleeping. If you have that happen during sleep it might be worth mentioning to your treating physician if you haven't already. Thanks for watching.
@@vestibularjoy Thank you. Taurine helps a lot in case others are interested.
Dave - what a great interview. Thank you for all you do.
Glad you enjoyed it
Nancy’s speed walker is cool 👍🏽 I agree with her about the escalator. Problem with the dizziness is chronic vomiting. Sitting down to eat and bouncing in the chair makes food fly right back out of the stomach out of the mouth. I have to stand on a wobble surface with my eyes closed to eat, preferably over a sink. Sadly, fresh food is hard to digest and keep down. Over cooked, reheated soup and meals, protein powder and protein bars have a chance of making its way through the body and through the digestive system. Drinking water with food will make everything come back up. Water, food, supplements that need to be taken with food and water
Thank you for your comments. Yes, it can be difficult at times to find the right balance with food, medicines, rest & etc.
Thank youuuuu so much for this video. Im suffering from this since I had the preeclampsia in may 23. Its horrible. Especially the brain Scrambler 😭😭😭😭 oh Lord what can I do against it. Please help
We are sorry to hear you are going through this. VEDA (www.vestibular.org) has helpful information. Finding the right doctor is one of the biggest hurdles. Ask your care providers how familiar they are with vestibular disorders.
Great video girls ❤️
Thank you Dave!!!!
Not sure i agree that MDDS prefer to stand still. People with MDDS are unstable when walking. Not so much when not walking around.
Thanks for commenting.
Thank you for your expertise . Just bought the book
Hoping you find some helpful information in it.
Once again you two did an awesome job!!
Thank you so much 🤗
What a nice reminder!
Thank you!!
💜
Thank you!! I need to remember these myself. LOL
Yes! 💜💯
Thank you!!!!!!
Very helpful tips! ❤
Thanks
Great Video !! Great information too
Glad you liked it!
Thank you Andrea for a fabulous interview!! So grateful for my Avulux lenses.
Absolutely love these 💜 thanks for sharing
Thank you. I am enjoying learning to make these!!
Yes!! ❤
Thank you!!
💜
Thanks!!!
Have a look at The Steady Coach
The Steady Coach is wonderful!!!
“I never believed before now that there is a cure to Meniere disease until my nephew got his Meniere disease🦠🦠🦠 cured with a treatment from Dr Madida on UA-cam…”
What rescue medication have you found worked best if you don’t mind sharing
Hello. Every medicine is different but I use Timolol Eye Drops & Ativan (very low low dose)
Kimberly I too same symptoms and mine was caused too by extreme heightened state of anxiety from events and nervous breakdown.. I saw you today on the pain free you interview and was surprised to see you on here...
Visual symptoms in MDds?😢
I have visual warping and disorientation along with the bobbing and swaying. Also weird spatial awareness with distorted sound perception sometimes.
Thanks for the update ladies! Summer has been busy and I miss seeing your faces! 🎉🎉for the well deserved "VeDAs Volunteers of the Year Award". ❤ Keep up the awesome work!!
Thanks Heather!! Miss you too!! ❤❤❤
Thank you Heather. We are truly blessed to have met you on this journey. 🐚🐬🌸
Enjoyed the update. Thank you
Thanks Kevin!! Love your LRC video!! Thanks for being brave and sharing your story!! ❤
Kevin, Thank you. You new video is amazing. 💙
Great video Joy and Marissa 🎉
Thanks Ann!! ❤❤
Thank you Ann!!!!
Which neurologist helped you guys ? I have VM snd I haven’t found a solution for my dizziness 24/7 I don’t have headaches but feeling unsteady and vision changes it’s bad
Hello. We both see Dr Shin Beh via Telemed. Finding a Neurologist that specialized in Vestibular is a bit harder to find out there. I don't have headaches either just the dizziness. If you go on the VeDA sight they do have a physician directory. Now keep in mind not all the Vestibular physicians are in the directory. You can also contact VeDA Direct for peer-to-peer counseling and help. vestibular.org/about/contact/
Hoping you find some relief.
Great job ladies and thank you Johan for continuing to be your true self, offering support to others and always being honest even when it may hurt to hear. You just want the best for others. Many blessings to you three!!!!!!
Thank you. We had a blast speaking with Johan.
Thank you 🙏🏻 and remember to always Find your CHAPPINESS !
Thank you again for the great interview. Listening to the interview again made me smile. ❤
Thank you Johan!!!! We had such a great conversation! Thanks for letting us be part of your journey!
I love this video! First time I saw this.! A beautiful beginning to a great friendship!!
I'm glad you mentioned family members since I have/had Familial MdDS. As such I wonder if there is any research about the genetic component of MdDS? I think Dr Wolfe has been looking into this but I don't know much about it. In the UK we have a woman with MdDS and all three of her daughters have it too.
This is a great questions. If we find any info on this we will share.
My diagnosis is vestibular migraine...but I suspect I might have MdDS after reading a pub med article that discusses subsets of MdDS...it addresses MT (motion triggered) MdDS and SO (spontaneous onset) MdDS...Because I had not been on boat, ship, plane, train, etc my doctor told me I couldn't have MdDS...I told him about the subsets in the pubmed article and pointed out I might have SO MdDS but he wasn't convinced. I saw another doctor who finally ran some tests to rule out other causes: VNG,VEMP, some other auditory tests, an MRI of the brain to rule out a tumor b/c I'm a cancer survivor, and a CT scan of the inne ear...these were all normal except the auditory tests did show I have some hearing loss in the low decibel range...I also have roaring tinnitus in my head as well as the rocking motions, the sensation of the floor vibrating when it's not, and balance issues... This all goes away when I'm riding in a car....His clinical diagnosis was Vestibular migraine. I am satisfied the diagnosis is right BUT the neurologist I was referred to isn't convinced it is VM..why? Because my episodes are chronic vs episodic. I pointed out that VM can be chronic but he still wasn't convinced I had the right Dx......I referenced him to the Johns Hopkins websites on VM as well as the Mayo clinic to no avail. After hearing today from Dr. Beh that Menieres symptoms can include roaring tinnitus, which is the first time I've heard that, and b/c I do have roaring tinnitus in my head, and hearing loss in the low decibel range as well as ear problems in my left ear (my ear felt stopped up ..turned out there was fluid behind the ear drum and my head sounded like a melon when I tapped on the left side; myringotmy was performed) it makes me wonder if I might have Menieres, plus I'm still wondering as well if I might have MdDS instead, b/c riding in a car cancels all my symptoms, . Either way, MdDS, Menieres, or VM, the treatments are similar..the neuro Rx'd Ajovy saying if it worked it would prove I had VM....I was on it 4 months, it helped somewhat...my zero symptom days increased from 8 to 10 a month... he thought not good enough considering the expense, my age (73) and some other things, so I was put on Amitriptyline. One low dose of it gave me some serious heart palpitations, so that was stopped........ next drug was Xanax, .25 mg daily for two weeks, then .25mg daily 2x a day which worked beautifully, for one month, until it didn't due to inter-dose withdrawal and/or tolerance withdrawal...I didn't want to unnecessarily be on a benzo long term if other options worked, so I was kept on the Xanax and Rx'd Zoloft..13 weeks on it now...might be working but not sure b/c I'm tapering off the Xanax and am experiencing withdrawal symptoms.....am doing a very slow taper..down to .125mg daily from .50mg daily...I reduce the Xanax by 1/8 each week....When the taper is finished, IF the Zoloft does not work alone, I might consider a low dose of a long acting benzo instead of or in addition to the Zoloft...... I am 73 and have no real issues with side effects taking these 2 drugs except the Zoloft caused insomnia until I switched to taking it in the a.m. instead of before bed. I'm in my 4th year of this nightmare, on meds since Jan this year b/c it took 3 years to get a diagnosis.....it's been a journey which I describe like this: This journey, the VM journey, is like traveling without a map, not knowing where you're supposed to go let alone how to get there, and along the way finding pieces of a map that when put together show you the next step and step by step you eventually get to the right place.
Thank you for sharing your story. Finding the right medication can be very daunting and you are right it is like a puzzle. So many of the vestibular disorders share the same symptoms. I (Joy) have ringing in my right ear but Marissa does not. Wishing you the best on finding which medicines and dosages work for you.
I wish we knew why some people have episodic MdDS and others don't. I've been lucky to have had lots of remission over the years and I am back in remission again now. Based on what I learnt from Dr Dai I think this remission will stick but if I do get another episode I would go to Antwerp (I'm in the UK) and donate my data via the clinical trials there. I also found a haptic device (the Basslet - the subwoofer, not the fish!) which worked like a charm and could also switch off MdDS symptoms by putting my feet on a TENS machine. I am concerned about the overdiagnosis of PPPD and that some people have had their accurate MdDS diagnoses changed to PPPD without any further consultations taking place.
Thank you for sharing. I do wonder the same thing too about people not being diagnosed with MdDS.
www.ncbi.nlm.nih.gov/pmc/articles/PMC5834551/ This link explains the subsets of MdDS which includes MT(motion triggered) AND SO (spontaneous onset).
Thank you for sharing this link. I am going to share this link on the Community Page!!!!
@@vestibularjoy Your're welcome.
Five years in July. I am going to purchase the book. MdDS is a living nightmare. That's all I can say. I am going to keep at it, continue to work full time as long as I can, and enjoy my family. My daughter is getting married next year, and I will do whatever it takes to do all the mother/daughter "fun stuff" with her. Dr. Yonit Arthur of The Steady Coach and Pain Free You with Dan Buglio on UA-cam are great resources.
Congratulations on your daughter getting married next year. Dr Beh was so informative about MdDS. That is wonderful you are pushing through even though it is hard. Dr Yonit Arthur is wonderful. I didn't know about Dan Buglio, so thanks for sharing. His videos look very interesting.
Thank you Dr. Beh for giving us your time!! Also, a thank you to @davidmorill, @kimberlywarner, and our support group members!
Loved this conversation!!!! Just got the book in the mail a few days ago and am excited to dive in. Thank you Dr. Beh for all you do for us! And thank you Marissa and Joy for bringing us all some incredible resources and love.
Is this about balance disorders?
Yes, Kimberly Warner is a vestibular patient and also brings awareness to chronic illnesses.
Still working full time almost five years from the plane ride that gave me MdDS. I can still hope.
OHHHHH Kimberly, I can not wait for your Fluff face cream to be available!! You are such a gem!
So interesting about our shared "looping thoughts" pattern too... listening to us discuss that now and it does make me curious about how this might be connected to PPPD or MdDS.
Note: All photos used in this video came from Kimberly. Such beautiful photos.
I enjoyed this conversation soooooooo much. Joy and Marissa, thank you for creating this space for all of us to share our stories with you. xoxoxoxoxo
Thank you for meeting with us. I can't wait to do Part 2:)
So excited for this episode to be released! Kimberly is truly a talented and amazing woman and vestibular warrior. Kimberly has done so much for the vestibular community with Unfixed Media and VeDA. I am honored to have her as a friend and fellow vestibular warrior! Enjoy!
I can't wait !!
Thanks Dave
Check out our new videos! We did some wonderful interviews over the last couple of months and can’t wait to share them with you! Please remember to Like and Subscribe ❤ Thank you for supporting our channel as we work on our mission to make vestibular visible and bring hope and joy to others. 💜~M & J
Areyana thank you for sharing your inspiring story. Your resilience is encouraging for all of us that continue to live with these disorders everyday. I can't wait to see what lies ahead for you.
You certainly inspire people Aryana! You very inspirational! Great interview!
Excellent once again! When Hayley mentioned laying down and feeling like she was falling, that brought back so many memories. Loved her transparency in saying she's "still in it". We're so geared towards "quick fixes", that when we're honest that even with treatment and meds we still are symptomatic, people are shocked. Thank you so much for your show, sorry I couldn't remember the name during LRL, but glad I could remember your names ❤️
Great interview Haley!
Pat thanks for watching.