I hope I’m not going to jinx it now, but I can affirmatively say:
I’m dizzy free!!!
Now I know I may be a special case of ‘trauma-induced MAV’ (but I also know I’m not alone in that on this board), but I’d like to think this gives much hope to you all regardless! (after all many of you may have had some ear trauma but didn’t realise it at the time!)
I have had several weeks now of zero imbalance and dizziness to the point that I can’t even quite remember what that felt like.
Now I know relapse is possible, so one has to be a bit guarded at this stage, but heck, it’s a total change from the previous 33 or so months!
I did go through an interim stage for a few months of feeling less imbalanced and then having odd ‘moments’ … I occasionally still get those but they get fewer and farther between.
Oh and FYI I’ve been off medication for 10 months … so you may not need the medication to improve, as I’m way better than I was even after I gave up medication. However, for some it’s a quality of life trade-off … of course there was a long period when the drugs were necessary to block migraines.
I still have some mild hearing impairment and persistent tinnitus but I’m more used to it … it’s not got any worse. And I’m very hopeful that if my balance can be sorted out … so can my hearing … so here’s hoping
I should add that I used to have daily feelings of fluid in my ear when I got up every morning. I barely get that any more at all.
Hang on in there!
Wow, congrats man! There is hope for us!
I had hearing loss and tinnitus before all this started (sudden sensoineural hearing loss) and I’ve just got used to it. Sometimes the tinnitus changes, but it never goes away. The hearing loss has never changed for me. Hopefully in your case it does, but even if it doesn’t I can definitely say you get used to it. Is it just the one ear where you had trauma? Or is it both?
One ear. And I didn’t lose any hearing or have any tinnitus to begin with … there was a period of about 5 months after the trauma before the tinnitus came and my HF hearing decreased. I understand this is because of inner ear pressure. My initial bout of 5 weeks of severe imbalance disappeared and I thought I’d dodged a bullet … little did I know it would all come back and much much worse!
It just shows that trauma and effect can be separated by at least months, and possibly a lot longer.
Ah, so yeah if its just pressure it sounds like you could get your hearing back, which is awesome. In my case the cochlea hair cells are probably dead. So, I’m looking at getting a CROS device for my left ear so I can at least hold a conversation on that side of my head. But first on my priority is MAV…
Erik, there are many cases of recovery in HF hearing range. LF much less so. In the case of HF hearing loss it’s basically a loss of response of the ear. It’s like a musical instrument that relies on many physical properties to work optimally. I’d say it’s entirely reversible … and many experts agree that basic ‘hydrops’ (inner ear pressure) is reversible. Hair cell death? Not proven.
Yeah agreed if its MAV-like stuff or sometimes meniers. But, since SSHL occured, which occurred 8 years ago (before MAV), I’ve had zero changes in hearing and tinnitus. It was like something (virus?) just killed my hearing in matter of hours and then that was it. No changes in vestibular function, no MAV, etc… just hearing gone, like that… I wish it was reversible, I hope that stem cells someday will fix it.
this is awesome to read! thanks for staying around for us!
I wouldn’t make any assumptions. The plumbing & physics of the ear is pretty complex and hearing loss can be caused by so many things. There has been progress made in determining the cause of meniere’s hearing loss.
In terms of stem cells, I would say that unless you can sort out the pressure of the ear, there will never be a return to normality. You can imagine the whole ear being ‘damped’. You may have not lost any cells at all but if the sound waves aren’t reaching the hairs with the same power transmission you are going to have less good hearing.
I have a friend that woke up one random day completely deaf in his left ear. Vertigo so bad he crawled on his belly. After VRT and 30 visits to a hyperbaric chamber, he gave up and decided to live with it. He’s at peace with it now. He recently ran into a guy who had the same thing happen and the same outcome.
That’s good. But I have to say, stuff completely accepting this. It takes time to improve but haven’t needed to accept the status quo fully so far
(though I recognise accepting the condition ‘for the time being’ can be a good thing)
I can’t wait for that moment of not even remembering what this feels like! way to go for you James!
Long may it continue…i posted earlier i will shout from the roof tops when i post my success story…congrats👍
I might add it happened in stages as you can see from my diary … vertigo … can’t even remember when I last had that, for example, I’d have to look it up! Last full on migraine was ages ago too …
That’s great - fab news - and very encouraging!.
Awesome! What do you think other than meds helped you get to this point?
That is wonderful news, James! It is so encouraging! Enjoy your improved health!
Minimum bending down such that head kept above waist as much as possible - at one point I could increase tinnitus by a lot just by bending down which was a big clue to what was going on and what might not be good for me
When im laying down and get up and bend at the waist, my ear pulsinates loudly like a whoosh wave sound in my right hear. It feels like its fluid wanting to come out but cant because of the ear drum.
James!!! I’m soooo happy for you! That’s amazing news, and I hope it’s long lasting recovery! Truly happy for you!