$628.38 raised for my individual page!
My goal was $300!
Our team The Unstoppable Dizzy Detectives raised a total of $1,004.33! (combination of all our personal fundraiser pages)
Our goal was $500.00!
VeDA :: Vestibular Disorders Association
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CAREN :: (Computer Assisted Rehabilitation Environment)
and Vestibular Rehabilitation Therapy (VRT)
I am an advocate for VRT as a support to healing and regaining balance and brain function. No one treatment is a cure, but rather a support for me anyway. The way I explain VRT is that it entails exercises that help retrain my brain to communicate with my inner ear/ balance system. I can say VRT helped me gain my balance back over the span of the last two years.
I had breaks in between going, and have to admit I have slacked on eye exercises, but even with that being said, I can say I am overall 85-90% better on most days even though I still deal with derealization and decreased cognitive function. My balance is wayyyy better!
My VRT Story
My Diagnoses have evolved overtime. Currently I have PPPD, Cervicogenic Dizziness, and Vestibular Migraine. But in the beginning it started off with diagnoses of Vestibular Neuritis, and Acute Peripheral Vestibulopathy.
My vestibular journey started In May 2018 I woke up with vertigo after going through some major life events, and a severe pinched nerve in my neck, and was never the same. I was very freaked out, but I wasn’t taking no for an answer. I started googling Vertigo.
5 days later, I saw my primary care doctor who knows me well, and she was the first practitioner who mentioned I may need to see a Vestibular Therapist for VRT.
I had been through so many other chronic illnesses that took over my life before this day so I was determined to fight. The symptoms got worse and I ended up in the ER.
After being in the ER 2 times at Balboa Naval hospital and having a normal CT brain scan, they referred me to a VT in their physical therapy clinic on base which is located within their physical therapy program.
The base holds symposiums so the ER department, practitioners and inpatient areas come together with a continuity program.
The fruits of their labor came forward when I showed up.
I met my VT and she offered me an opportunity to participate in a new form of VRT
CAREN - computer assisted rehabilitation environment at the Naval Health Research Center (NHRC)
The CAREN is used for a variety of tests, and studies including Warfighter Performance training, PTSD patients, and more.
There are 5 CAREN systems in the D.O.D. and I think I read 6 or 7 in the US, and approximately 20 world wide.
CAREN from June 2018 - September 2018 (EEG within the study)
I have continued with the CAREN system along with traditional customized VT exercises as a part of my VRT off and on since then. I have also done a home program with a variety of custom eye and balance exercises based on my symptoms.
My VT is a big fan of encouraging additional supportive treatments for me or anything else that supports my quality of life like….
Calming my nervous system down with yoga, meditation, mindfulness.
I have seen about 20 doctors/ practitioners/ specialists related to my vestibular symptoms so I can find a root cause, and what I learned was a lot of the tools are within myself and VRT was a big puzzle piece in coping and regaining a lot of my balance back.
VRT Questions and Answers from the panel
Where did you learn about VRT?
Through my primary doctor PA Debbie, who knows me well.
The ER at the Naval Medical Center San Diego after going twice for my vestibular issues.
How long did it take for the exercises to begin having an impact on your symptoms?
4 weeks into therapy I felt a change.
All of my scores on the tests and self report questionnaires improved, but after visit 12 (about 6-8 weeks), I passed all tests.
I was able to walk on my own after this, even if I didn’t feel totally cured.
The process continued for me and since then we have worked off and on tackling the last 10 % of lingering daily vestibular symptoms such as, brain fog, cognitive impairment, low concentration, brain zaps, vertigo drops/drop attacks/brain drops.
Some days are worse, and I go through flares, but I know what my triggers are too.
Do you still practice home exercises? How often?
Yes, I have also done home program with a variety of custom eye and balance exercises based on my symptoms.
This is suppose to be part of my daily routine.
I have not been consistent. Guilty!
I treat it as a muscle that needs strengthening.
It’s uncomfortable, but it’s okay. That’s part of the process.
I struggle with objects close to me that are moving as well as when I move too fast.
Also vision lag, and the brain fatigue and impairment side.
My treatment is customized based on my triggers.
Eye Exercises and Movements with a timer
Tell us about your vestibular therapist .....
I have worked with two.
I initially saw Dr. Grant Meisenholder DPT who is a VeDA Provider on our website was who I saw initially and he immediately confirmed vestibular dysfunction.
His colleague then transferred me over to Dawn Bodell who took over my treatment.
She is a Vestibular and Research Physical Therapist and loves vestibular everything. She attends every course and conference she can, and also works on/ publishing research on VT and virtual reality.
I love her!
What I want People to know .....
VRT should be very customized and specific to each individual case.
Not everyone’s treatment with VRT is the same.
VRT is no quick fix. I know it’s hard to be patient. I struggled with this.
Consistency is key (I am guilty of not always being consistent) and I notice a difference if I am not in a routine.
VRT is a PART of my treatment.
For me, it’s been a variety of shifts and tools. VRT is one of the big puzzle pieces.
We had a blast! Thank You to VeDA, our speakers, sponsors, donors!
I purchased the full 5 days of 6 sessions and it's worth it!
We have had an overwhelming response of support and happiness around our first annual virtual vestibular conference and had people join from all over the world.
Check out my Fundraiser page by clicking the photo above.
Join Our Team! Click the photo below
VeDA is a non-profit organization that I am in love with!
The organization was established in 1983 and their mission is to support and empower vestibular patients on their journey back to balance.
I love that VeDA spreads awareness holistically which includes education for not only patients, but also family and friends of patients, and health care professionals around the world.
My vestibular therapist told me about VeDA in early 2020 and I found their support group on facebook afterwards.
In April I had more of an urge to be involved in the vestibular community, and invisible illness community.
I have always wanted to use my voice and share my story for others. The more info and awareness the better.
I decided to be active on Instagram and I found a few authentic and genuine vestibular warriors. They gave me strength and motivation.
After the encouragement, I heard about being an ambassador for VeDA and just knew I needed to participate.
More to Come!