Tomasz

19 hours ago, Sophia3 said:

I don't know if anybody saw my post about VOR...but I have had POTS since early 90s, dx in 1998 and disabled...

Allow me to share my story as I rarely come here anymore or to any support group but this could help somebody..  EDIT if you have Menieres please read this and learn about VOR and gaze stabilization..many are medicated for this but exercises are critical...NOTE if the exercises make you very dizzy, that means you need them and things will get better..

I have had inner ear and balance problems on top of this for over 30 years..(BPPV...everything has long names with what some of us have!))

last August 2021 I got a stomach virus that made me dizzier every time I vomited...and I could not walk to the bathroom....and the dizzy seemed to stay with me...not with just walking or standing but LOOKING at the world..by that I mean I like to photograph birds, especially eagles or osprey..i could not watch birds feed outside my window or the leaves moving on the trees.

well it was a busy fishing season for the Osprey and as I tried to follow it through my camera lens I got MOTION sickness feeling, instantly...mild headache mild nausea, felt I might fall over.  I was devastated as few people get to witness this bird fishing dives....

Anyway, I saw an "ENT Balance specialist for thi"s...he simply gave me a hearing tests, have some loss in left ear and sent me to Vestibular PT.. told me to take  benadryl...sigh....the PT guys got I was dizzy but gave me insane exercises...like sit up 50 times as fast as I can. full blown sit ups..hurt my lower back and I am a small person but also have osteoporosis...not good on my spine.

THus I kept reading and NOTHING matched my balance or dizzy surfaces...until I brought it up to a holistic chiropractor (she never crunches bones)  she mentioned an eye website where I learned the term "Gaze stabilization exercises" .. then I stumbled onto the VOR system.  That was it!!





I cancelled the rest of my PT as this woman helped me so very much...for FREE. no email needed, no password she just helps people..I could not believe it.
Then there are a few videos online but this woman has 3 exercises...
beginners, intermediate and advanced. I started in order..then learned just leaving the house to use my camera and walk was a VOR exercise !!

Anyway, read up on it or maybe try this link if I am allowed to post a link..have not been here much in recent years and rules may or may not change..but this is a CRITICAL thing to know for ANYBODY who gets dizzy.. I don't even remember her name but have these links in my email. ha

https://www.youtube.com/watch?v=drRwAdjZ644&ab_channel=Movement%26Function

 

Thank you so much for this. I heard about these exercises, but I thought they wouldn't help me. I should give it a try.

Do any of you feel increasing pressure in the chest while standing as if traveling to the throat after which the throat begins to constrict? Then, of course, the pulse rate also increases, it is more difficult to breathe, I can take about 3/4 of an inhale or half. I will also start to cough when it happens. I had chest tightness with POTS, but this symptom with the throat is something new and concerning. Everything returns to (almost) normal after lying down.

Does it have something to do with blood flowing downward?

Hey 

On 9/6/2022 at 6:08 PM, Bailee said:

Went to target today as walked in a my dizziness was non existent but as soon as a started moving around shifting my body moving my head and body I got progressively more dizzier and disoriented/ off. However when  on my treadmill or I’m walking straight in one direction  I’m not shifting body as much. I’ve noticed this pattern for a while? Any tips ? Should I bring this up to my doctor? Does anyone know what it is. My dad says it is vertigo but it’s constantly happening when my body shifts it doesn’t just come and go.

I have exactly what you write about, and it started with me after covid along with POTS and MCAS. I don't get dizzy until I move my head or eyes and look ahead while walking. All it takes is a movement of my head or even my eyes and the dizziness immediately sets in. It's as if my eyes can't stabilize the image, it just makes everything float like that. I've noticed that this dizziness gets much worse when it's dark, so less information for the eyes. It also seems to me that the dizziness worsens when I turn my head as far to the right or left as possible, even if I keep my head stable in this twisted position.