Guys, I’ve noticed an annoying aspect of my condition: It often gets worse after I go down on my haunches and sometimes if I bend right down to pick something up. I can get a sustained increased in my dizziness that can last not just a few seconds or a minute, but a few hours at least.
The haunches thing is especially annoying as an amateur photographer when I want to take a shot from down low.
Does anyone else get this?
Cheers,
James
sounds like you may have more than ear trouble to me james…bit like me with neck and back issues interupting the already overflowing cup with your ear problems…
I have trouble with both all the time. I actually can’t bend right over to pick something up without having triggered dizziness lasting hours or almost falling over. And yes, squatting down makes my legs almost instantly “sore” but that’s not the right word. It’s like I can almost feel a blood flow issue and it also triggers dizziness.
James that used to happen to me ALL the time, every day , bending down to pick something up, stroking a small dog, bending down to say hello to a little person etc until topiramate. Now it doesn’t happen I am delighted to say. Yesterday I groomed Star bending over, bending on haunches to give her a massage, kneeling to massage stuff into her feet, all things that prior to topiramate would have caused extreme dizziness and nausea for hours, went without incident. One happy relaxed dog and person. So maybe the neuron calming meds really do help the brain settle and act in tandem with the antidepressants in small doses? I can only speak for myself, but I was so restricted in my movements before and now I don’t even think about it. I am slightly dizzy this morning because I have been running around like a blue fly cleaning my flat because I have an unexpected guest coming but nothing as bad as before.
Head below waist level is a no-no for me.!! The dizziness is usually fleeting - but I’m quite likely to fall over on my head! Crouching is not viable with knees and back, so picking something up that cannot be done with braai (barbaque?) tongs, sees me doing a weird kind of giraffe manouvre with legs splayed and knees slightly bent to reach out rather than straight down! Not a pretty sight!
Well guys, this is leading me to think of a new possibility - what if there is a chronic fistula that eventually re-opens under the pressure of one bending over (or guess what? lying down onto the bed), this would lead to an acute loss of pressure in the ear and dizziness would then probably last for hours after whilst your brain got used to the changed sensation and the ear refilled/healed … this relates to my theory about my jaw trouble … its all starting to add up … (remember I had one diagnosis of healed fistula followed by hydrops, this might explain all my MAV!) … I’m also imagining the variable injury to the vestibular window + the gunge that might get onto the Stapes apparatus might explain the HF loss, and its variability! However, this doesn’t explain the fact that you don’t get the spins when bending down, usually only when lying down?
james sorry to hear you have more symptoms, your thinking may be right after all 
but if this is the case how would you heal??
I think the problem could be one of hysteresis. You heal alright but you set off a pressure increase that doesn’t slow quickly enough so you end up with a chronic fluctuation in pressure. The only way I can imagine this sorting out is:
After a lot of scarring the membranes get very strong. Strong enough to cope with the pressure until it drops again
You destress enough to stop exacerbating the pressure with stress hormones
I take heart in the fact that in general my symptoms and stress levels have improved over time. This might suggest the fluctuation is dying down, if rather slowly!
My neurologist said some interesting things:
She said many sufferers eventually lose the tinnutus (suggests habituation or a pressure drop in ear?)
She says MAV eventually ‘fades into background’