i have struggled with an undiagnosed swaying dizziness for months

What is PPPD?

I too have been diagnosed with PPPD. Almost two years now and I don’t seem to be getting much better.
I function relatively well but the intensity really fluctuates depending on my activity. It’s always present when awake and it makes life very difficult. How are you doing with treatment?

PPPD can be a huge burden to live with! I' ve learned to be patient and keep anxiety at bay. Vestibular therapy can help if done religiously and being positive. I feel I'm progressing slowly

I wondered the same thing. From Google I found PPPD = persistent postural-perceptual dizziness. But I know nothing about it.

@minnmitzi Google didn’t have any information?

I've had constant, slight dizziness for 19 years running. The diagnosis, from Mayo Rochester and others, is vestibular neuritis. In 2006 the vestibular nerve on the right side of my head suddenly, and almost completely, stopped functioning. The job of keeping me in balance is being performed by only the left vestibular nerve. The cause is thought to be a virus. I'm still searching for a miracle answer. Very frustrating!
An array of in office tests can identify this issue.
Good Luck!

Did you ever find a diagnosis or anything that helped with your rocking sensation? I have had it since March and not really getting anywhere with Ent just printed out some exercises to do but they are not helping either 🙁

Hello @kalebt , I know this was 2 years ago but I’m experiencing the exact same thing!!£ did you get any answers?

@leanne0007 did you ever get answers? I’m experiencing the same!

@SusanEllen66
3. SSRIs or SNRIs (For PPPD)

Chronic dizziness often shifts into:
Persistent Postural-Perceptual Dizziness (PPPD)

This is not “psychological” — it’s brain wiring stuck in threat mode.

Low-dose:
• Sertraline
• Escitalopram
• Venlafaxine

have strong evidence for helping stabilize the visual-vestibular sys

(I am an early adopter of LLM use -please down load chatGPT app to get information on this type of dizziness always discuss the findings with your doctor. )

1. Targeted Vestibular Rehab (Different From Standard PT)

Many people say “PT didn’t help,” but what they got was generic balance therapy.

What tends to work better:
• Gaze stabilization exercises (VOR x1 and x2 training)
• Dynamic head movement training
• Visual-vestibular mismatch training
• Habituation protocols
• Neuroplasticity-based rehab

If dizziness has just started:
Are There Alternative Medical Treatments?

1. Antivirals
• Drugs like acyclovir have been studied.
• They are only potentially useful very early (within days).
• After 20 years, antivirals will not restore a dead nerve.

2. Steroids
• High-dose prednisone early can improve recovery.
• Not useful years later.

Many long-term “vestibular neuritis” patients actually develop:
• Vestibular migraine
• Chronic subjective dizziness (PPPD)
• Central sensitization
If migraine mechanisms are involved, medications can help:
• Low-dose nortriptyline
• Venlafaxine
• Topiramate
• Magnesium + riboflavin protocols
These treat the brain’s processing, not the ear.

6. Supplements (Limited but Some Logic)
Given your interest in mitochondrial support and neuroprotection, these have theoretical benefit:
• Magnesium glycinate
• CoQ10
• Riboflavin (B2)
• Omega-3s

They don’t restore the nerve — but may help central compensation.

Please discuss all information you find with your doctor. LLMs may make mistakes so Download LLM models Claude and Gemini apps too and ask the same questions to double check. I triage with the LLMs and find it useful in managing my medical problems but not all people do. It works for me.