u/PCT2022

Hey people, we all know PPPD is some sort of out-of-sync brain processing between visual / body / vestibular systems.
I wonder if having say, your eyes being more
Dominant, makes certain symptoms appear more than other ones.
I can almost feel my brain / eyes fatiguing just by doing something like walking through a supermarket etc. it’s as if it’s overloaded for something that’s seemingly simple and mundane.

Is there any way to test to see which deficit is effecting our subjective experience of pppd the most? I’ve had all the ear tests done and they all came back normal. Had my vision tested too and that was normal but as it’s software and not hardware, I think mine is overly dependent on visual perception.

What are the best VRT exercises to combat this?

So, today I’m in the supermarket and the typical weird “feel like I’m not in control of my body / feels like I’m on an escalator” sensation kicks in.
It’s just so weird and inexplicable. The thinking is that it’s the lights and shapes etc, I have no idea but I’ve just gone months without much of this and now it’s back again.

I’ve got a holiday booked for next month, but now that I’m in a flare up, I’m thinking about cancelling. I wanted to do a lot of walks, but if pppd is doing its thing I’m going to feel miserable. Also I only booked it 1-2 weeks ago. My friends who are aware of this condition, to a degree are going to think I’m an idiot or indecisive. People really don’t understand how crap this condition is, or how persistent it can be.
After all we look fine on the outside.
I’ve gone quite a while without any significant flare ups, surprisingly. But I now feel like this condition will never truly go away, and if it does go away for prolonged periods, I’ll still have to avoid many things (like the gym, using a treadmill etc) because that will start things off again.

Do you ever just think to yourself how unbelievably unlucky it is to have this problem?
Sure, many things are worse, but pppd ruins lives, but in a cruel way where no one sees you suffering. I can’t even describe how it makes me feel, let alone trying to get others to understand how it is.

So I’ve had pppd for over 2 years. In December and January it was really bad and felt like my head was sloshing when I was walking. It’s kinda weird how the symptoms have shifted quite a lot over the years. A lot of people have said “it’s not pppd” because mine always comes and goes. Nearly all of March-July I had barely any symptoms. I’ve also been dealing with gluteal tendinopathy so I’ve been going to the gym, as per my physios program. Now I can feel that wonky spacey feeling coming back again. Really not happy as I have booked a one month vacation in the USA in a months time. I’ve been working really hard and I was partially sure my pppd was finally gone for good. I’m going to do what I did last time and do my VRT program 3x per day for the next month and hope it settles again.
I feel for anyone going through this stuff, it’s such a weird and invisible condition. I’ve had good times and months on end where you feel very wonky, spaced out etc. I can’t imagine how bad it is for some people who have it all the time and to an extreme degree.
But anyway, all I can think of that’s kicked it off again is doing weights where I’m laying flat on my back and exerting myself, or other exercises where I’m using an exercise ball and I’m slanted downwards. I feel like I should just give up on the gym stuff completely.