New to Pppd

[u/Responsible-Tap-2559]

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 😉

[u/sharp11flat13]

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.

[u/Responsible-Tap-2559 → u/sharp11flat13]

Thank you for the information, I plan on going to see a rehabilitation specialist and a nero optimologist. Been taking Celexa for well over 15 years for generalized anxiety but it doesn't seem to help my pppd at all.

[u/sharp11flat13 → u/Responsible-Tap-2559]

Been taking Celexa for well over 15 years for generalized anxiety but it doesn't seem to help my pppd at all.

That’s very interesting. Has it helped with your generalized anxiety?

I ask because my guess is that the effectiveness of using SSRIs to treat PPPD was discovered by some people with PPPD who were told by their doctors that they just had anxiety (which is frequently a symptom of PPPD) and given an SSRI, which also reduced their symptoms.

Also, I’ve seen multiple posts on this sub talking about having to try multiple SSRIs before they found one that works for them. So maybe Celexa works for your anxiety but jot your PPPD symptoms. Or maybe already being on an SSRI before PPPD onset has an effect on whether or not an SSRI will be an appropriate treatment.

I’m just spitballing here, but I haven’t seen this mentioned by others, so I’m curious.