What is Vestibular?
The vestibular system can be divided into two main systems: the central system (the brain and brainstem) and the peripheral system (the inner ear and the pathways to the brainstem). - VeDA (Vestibular Disorders Association)
My Quick Background
Vestibular Disorders are a huge part of my life and why I am who I am today. Growing up I dealt with head pains that left me sensitive to light, and sounds with the throbbing in my head. I also had vertigo before, but I always recovered from it.
Since I was little I have dealt with derealization, and a disconnect feeling. I have always struggled to concentrate. Vestibular disorders heightened these symptoms back in 2018. You can read more about my Vestibular Story by clicking on the links below.
In the Sub Menu above (desktop version) , you will find a variety of topics or you can click on the options below.
My Vestibular Disorders
I've had tinnitus for over 10 years, but this increased after the major Vertigo episode.
In 2018, I was diagnosed with Vestibular Neuritis and APV.
In 2019 I learned about the constant state of a vestibular migraine I was in. I also learned that I was dealing with PPPD.
In 2020 I had another long 12 hour episode of the spinning vertigo which was the biggest one since May of 2018. This time we saw a pattern. I has a pinched nerve in my neck prior to both episodes which led us to this diagnosis (CV).
Could this be linked to head trauma I have had in 2002 and 2016? We don't know yet, but we suspect this.
You can also go to the top menu for some Vestibular Diagnoses. Not all are listed.
Vestibular is an Invisible Illness
What Vestibular can feel like
:: Vertigo ::
Spinning, tilting, swaying, nausea, sometimes vomiting, being pulled down to one or both sides, can’t move at all, and certain positions make it worse.
A never ending Rollercoaster.
:: Balance Problems ::
Imbalanced - Walking on a tight rope, drunk or high feeling, swaying, tilting, tippy, on a boat feeling, motion sensitivity, floating away, bobble head
Had to have my hands held out as if I was in the dark, but I wasn’t. Holding onto people, and shopping carts made me more stable and grounded.
:: Eyes ::
Resistance behind my eyes like there’s little people pulling on a string controlling me.
Lag in vision and reaction
:: Brain drop/Vertigo drop ::
Like I am being pulled in one direction, lasting one second.
I literally felt like I was dropping like in a rollercoaster park.
:: In the Beginning ::
Was having left side pains and numbness and tingly on face and down arm ( second ER Visit )
Hot flashes in my feet
More Vertigo and Imbalance. More Panic. Worsened symptoms.
:: Ears ::
Tinnitus - Ringing, pulsing, thumping, hearing loss, ticking, deafness before the ringing (almost like I just went under the water).
Thumping in ears usually to frequency of whatever I am doing and when I use gun protection, ear plugs, or Bose, then that helps it
Aching and fullness in the ear (Aural Fullness)
Someone said Morse Code in ears
Others I didn't have - Hearing loss (I got testing)
:: Brain and Cognitive ::
Disconnected (here but not here)
Feeling very off
Brain Fatigue, Zapped, heaviness, Lagged, Resistance, Fog, delayed, and slow
A friend calls it "brain mush"
Drunk, buzzed, or high feeling
Extreme sensitivity to sounds and conversation
Come on brain, split it out
Something is wrong with my brain like maybe brain damage
Not in control of my body.
Symptom Impacts on Your Life
Head Pressure and Migraine attacks
Trapped in your body
MDD was triggered
GAD worst ended
Anxiety about relationships and the future
Job impacted and/or lost
Employer abuse and disregard for your condition
Employer breaking the law
Heart rate increase
Independence taken away
Avoiding places and people in fear of having a vestibular attack and overstimulation, a set back, and being misunderstood.
People walking too close and fast around me
Objects moving on my computer
TV Movies Shows Video
Following or tracking moving objects
Game over if someone throws a ball at me or something for me to catch
Scrolling on phone or computer
When I move too fast
People talking to much or too much conversation
More to Come!