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  • 20 years of this crap

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    Old 01-14-2022, 07:38 AM   #1
    ansleygc's Avatar
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    20 years of this crap

    Yes, twenty years of bppv. I have tried everything and can tell you this, it seems to be something I will be living with until the end. So I can tell you right now a few things about this nasty animal. First, learn to live with it. If you think there is a magic pill or way to cure yourself you are setting yourself up for disappointment. Secondly, general practitioners have no way of helping; they will charge you 100 bucks or so and sent you to pt. PT maybe able to put the calcium crystals back into place for a segment of time, but they will probably "slide" out of position sooner or later and you will be back to square one. Other specialist, such as ENT doctors, etc. are of no use either. They will willingly take your money and talk a good game, but in the end you will be no better off. So, my point is, there is no long term cure for bppv. I guess it could be labeled a chronic condition. What angers me is the way the medical profession will pass you from one doc to another knowing darn well it is somewhat fruitless. They seem to have some type of code, a "back scratching" if you will, of feathering each other's pockets. I am sure there are hundreds of people suffering from nothing more than bppv that have spent well over 10k chasing a nonexistent cure.
    My wife does not understand why over the last several years there are times for days on end, I function as if I am an 80yo man. Days upon days of functioning at about 60%, unable to help with the daily chores around the house and yard. Unless one has experienced severe vertigo, they have no idea. I am 68 now and over the last 9 months have dealt 4 times with awful attacks. It is depressing to say the least. Sorry t have reported this way, but this is the view I now have some twenty years later.

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    Old 01-14-2022, 11:11 AM   #2
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    Re: 20 years of this crap

    I've had BPPV since 1966...hit me on the right side when I was 11. There were various treatments, none of which seemed to help because I had no diagnosis. In 1975 there was a change when my new specialist (who also had BPPV) finally diagnosed me, so having that was helpful mentally. He did the Semont maneuver as I needed, and at least I was able to function better.

    You are correct we need to continue funtioning while in attacks, however, there are periods of time that it's near impossible and mentally exhausting. Its sad to hear your wife isnt being understanding...however, maybe one day she will experience a reasonable amount of dizziness and realise how it is to be living with it.

    Starting in 1999 to was nonstop and different from what I ever had before. I did have a flu and then sinus infection that I didnt realise...eventually put on antibiotics. Didn't help the BPPV. The specialist I saw then diagnosed me with BPPV in both, a hell experience that I never imagined. I tried different maneuvers, and requested to be sent for an MRI to make sure I didn't have MS. By the time I was sent to see another top specialist, it was starting to resolve ...but he did the Epley Maneuver on me, and it seemed to help OK. When my next attack happened, I couldnt get in to see him for a few weeks. I never did go back and continued to do the maneuver myself.

    I found using Sudafed extremely helpful when in attacks and doing daily sinus rinses. I also do the Epley when I'm feeling off, thinking it's sludge, and it eases that feeling.

    There are other maneuvers now...with one sitting on the floor on one's knees or sitting in a chair with the head laning forward in proper position depending on affected ear. Most of the maneuvers are for the posterior canal...however if one is uniquely blessed with it in the other canals, the maneuver positions are different.

    I still get visual moments of vertigo...via TV (when scenes are circular shot or zooming in and out) or even scrolling quickly on my computer or tablet. They really catch me off guard.

    In this day and age...accessibility to help via internet is plentiful regarding help. I encourage you to try the one with you leaning forward if your BPPV is posterior. There are books on vertigo and one specifically on BPPV with great information.

    I just want to add that some medications can cause dizziness/vertigo. I was recently on a beta blocker that caused that so I stopped it.

    I hope you're able to find some resolve...even temporarily ot to a point of less symptoms. Just to add that I do sleep on the affected side once my initial anxiety of it being back has eased and my brain gets better at having it.

    I wish you well,
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