Visit to my Neuro-Otologist and Update (Epley Canalith Repositioning Maneuver)

Jimmy, your dizziness at moving your head is typically BPPV and that is why the doctor tried Epley's procedure. Epley's procedure WILL start spinning for a few minutes and it is a part of the process to gradually dissolve otoconia or ear stone. Your headache is another story which may be particular to your condition - could be related to your perilymph fistula. Not many doctors have ample experience with perilymph fistula, so finding the right one would be important.

Good to hear that you have removed the tube, as steriods can only expand playground for herpes. I recommend keeping away from steriods.

Neck braces are generally not suitable for Meniere's disease and it may quickly weaken muscles which may adversely affect the condition. I would rather recommend stretch exercises on the neck.

 

Good luck, Jimmy. What you're experiencing sounds agonizing, even if it's getting better, so I hope you find some relief soon.

 

Jimmy--I know what you mean by feeling dizzy after the epley maneuver.

When I went to 'balance therapy' two separate times, the very good therapist--wanted to 'rule out' BPV (benign positional vertigo). He did the maneuver on me and I did seem to have it but not really bad--yet!.

Since I've had BPV several years ago--before Meniere's, I knew what he was trying to determine. He gave me the exercises to do at home and I'd get dizzy for the first few days and then began to ease and so that 'took care' of that problem. I completed 4 weeks of balance therapy and he just gave me 'tips' to use for balance at home.
I saw my Ent--my hearing is very poor--but was told the Meniere's has 'leveled off'--won't get better (probably) but no worse either. So, I hear poorly even with very good hearing aids. Some days do seem to be better than others. But hearing is either too loud and distorted or not loud enough--but I have developed a sensitivity to 'loud' anything.

He called it 'recruitment' or hyperacusis issues. I have 'dizziness a good deal of the time when I'm upright, but manage to walk good as I focus on a 'spot' to look out at and sometimes hold my husband's arm or hand--just touching something or someone when I walk helps.

Not leaning or pulling on them, just touching. No cane helps. When I tried that I actually did better holding it in my right hand to balance rather than leaning on it--strange but true. Just part of my ongoing story. Hang in there--we all are doing our best.

 

Just part of my ongoing story. Hang in there--we all are doing our best.
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Isn't that the truth?!

 

Complex--is a good word to describe this condition for sure! So many are really having difficult times and some of us have 'been there too'!

I am dealing mostly with hearing loss--very troubling due to being among friends, family a good deal. Not being comfortable with various conversations going at once. And the loss of really 'hearing and loving' the music that always gave joy and comfort--has been a big side effect of this condition that 'hurts' the most. But some days are better than others and I just try to enjoy or 'pretend to do so'. As we all do! Hanging in 'together'!