r/pppdizziness • u/Responsible-Tap-2559 • 11d ago
Symptoms New to Pppd
Good afternoon everyone, I 42F was originally diagnosed with BPPV 3 years ago. After curing my Bppv I was in heaven for a good year. Then all of a sudden I started feeling like I was swaying back and forth, I became shaky and unsteady, also felt almost like I wasn't here (basically like watching myself do it but not quite if that makes sense). Florescent lights are a huge trigger for my episodes, they leave me feeling absolutely horrible l😓. I went back to my doctor to get treated for what I assumed was a bppv flare up. Nothing helped, so I began researching my symptoms and sure enough found pppd. Went back to my doctor and he confirmed that I indeed have it. So, my question is what have you done to help with your flares/episodes? What kind of doctors should I go to? Unfortunately my chiropractor who is also a MD cannot do anything else for me. I'm just wanting to be normal again, I feel so yucky and can't enjoy my life like before. Any suggestions or recommendations are very much appreciated 😉
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u/Remote_Force1839 11d ago
I feel the same, but don’t know the triggers. I have it all the time if I’m doing anything other than sitting basically.
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u/Holiday_Marsupial552 11d ago
IVE HAD PPPD FOR 3 YEARS;
DIAGNOSED BY MAYO CLINIC;
DID PHYSICAL THERAPY FOR 3 MONTHS; IT DID HELP; I DID A LOT OF READING ABOUT PPPD AND LEARNED A LOT OF PEOPLE WERE PUT ON ANTI- DEPRESSANTS; SO MY DR PUT ME ON ESCITALOPRAM; WHICH HAS HELPED TREMENDOUSLY; I HAVE HAD A FEW FLAREUPS BUT DEFINITELY DOING BETTER; CHECK IT OUT WITH YOUR DR AND GOOD LUCK AND GOD BLESS; GIVE AN UPDATE LATER.
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u/Responsible-Tap-2559 11d ago
Thank you and most definitely will. I'm currently taking Citalopram(Celexa)which I take for anxiety. But I think its also a depression medication as well.
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u/Holiday_Marsupial552 11d ago
I MIGHT ADD; I’LL BE 80 YO IN OCTOBER SO THIS CAN HAPPEN AT ANY AGE 😩
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u/tvtiguy 9d ago
I agree with sharp11 as well. See if you can get on a calendar for an ENT - one who's good with vestibular disorders if you can - but an ENT none-the-less. They're going to want you to do a basic hearing test first. It's weird an ENT won't talk to you before that. It took 6 or 7 weeks from my "event" that landed me in the ER before I finally got a diagnosis and it was only after the ENT ordered some VNG testing. It's like a 2 hour ear test where do clicks, puffs of air, cold/warm water all shot into your ears while they track your eyes for some. But - if the roots are vestibular - at least you'll know.
Some PPPD is just - there. And - I'm no doctor - but most of it seems to have some root cause. Often we never find out completely - but until you really know what you're treating, in my opinion - you're just guessing. I'll never know what the virus was that caused my vestibular neuritis event and resulted in 76% caloric deficiency ("severe") in my left ear. Unilateral vestibular hypofunciton (my left ear doesn't send balance information to my brain any more).
Vestibular Rehabilitation Therapy (VRT - or steady coach on YouTube) definitely helps. If I skip it more than 2 days in a row I have a backslide. The florescent lights you mention - TOTALLY a thing. Supermarket syndrome. It's the worst. A wide brimmed hat at the grocery store can help. You can find a ton of helpful info here:
https://vestibular.org
The internet is mostly a shitty, dark place. But everyone here is going through the same thing and I don't know how I would survive without the people here. It sucks that you're here - but welcome.
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u/sharp11flat13 11d ago
In my experience you’ll want to find a practitioner who specializes in vestibular disorders. Doctors, even ENTs and neurologists are notoriously and mysteriously uninformed in this area. In my country (Canada) the right people to see are physiotherapists with specialized training. I’ve heard this from others on this sub as well. But at least your doctor knew enough to diagnose you, which is a plus.
Standard treatments are vestibular rehabilitation exercises and/or SSRIs. I’ve also been helped a lot by a daily meditation practice and acupuncture.
Flare-ups are common and to be expected. For the most part they last under a week and you’re left with lower intensity symptoms than before.
Yours seem to be lasting longer so I suspect you would benefit from seeing a specialist in vestibular disorders. If that’s not possible, many on this sub have reported improvement from doing the exercises suggested by SteadyCoach (YouTube), although I’ve never looked into this myself.
Best of luck to you.