Patients advocating for each other

What helped your tinnitus? Put it on the record.

Millions of people live with tinnitus, and most of what they learn about treatment gets lost in waiting rooms and forum threads. The Tinnitus Ledger collects those experiences in one place: what people tried, what their doctors recorded, and what changed — or didn’t.

The Ledger · sample layout

Treatment triedSourceResult
A prescription medicineVisit notesHelped
Sound therapyMemoryNo change
A supplementMemoryNo change
CBT with a therapistVisit notesHelped
A prescription medicineVisit notesWorse

Illustration only — not real reports. Real entries appear here as people add them.

Why a ledger

One story is easy to dismiss. Hundreds are not.

When someone with tinnitus finds something that helps, the news usually travels no further than a support-group thread. When something fails, almost no one writes it down at all. Doctors see a handful of patients; researchers rarely hear about off-label experiments. The knowledge exists — it’s just scattered.

The Tinnitus Ledger is a simple fix: a shared, public record, built by patients, that asks the same questions of everyone. Over time it shows which treatments people have actually tried, how often they helped, how often they didn’t, and what side effects came with them.

How it works

Three steps. About ten minutes.

Go in prepared

Print our visit checklist and bring it to your appointment, so your doctor records the details that matter — your baseline, the treatment, and the results.

Get it documented

After each visit, open your patient portal and read your visit notes. Check that what you discussed was written down.

Add it to the Ledger

Share the details from your notes — never your name, and never the records themselves. It’s anonymous from start to finish.

Every result counts

What didn’t work matters as much as what did.

A treatment that failed for you can save the next person months of false hope and side effects. A treatment that helped deserves a closer look. The Ledger reports both, side by side, without spin.

Be heard

Go into appointments with the right questions, so your experience is written into your medical record instead of brushed aside.

Be counted

Your single report joins hundreds of others. Patterns that no one person could see start to show up.

Pay it forward

Someone you’ll never meet will read your entry before their next appointment — and walk in better informed.

Not all reports are equal — and we say so

Three levels of evidence, clearly labeled

Memory fades and hope colors what we remember. So every entry shows where its details came from.

●From memoryA patient’s own account of what they tried and what happened. Valuable, and the easiest way to start.
●●From visit notesThe patient copies the dose, dates and results from what their doctor actually recorded. Much more reliable.
●●●From cliniciansDe-identified summaries from doctors and audiologists. Coming soon.
From record to research

When a pattern shows up, we dig in.

The Ledger isn’t the last word — it’s where the questions start.

When a treatment keeps showing up with good results, TinnitusMonthly looks at what the published research says about it: what has been studied, what was found, and what is still unknown. When the research and the Ledger disagree, we report that too.

An honest note: self-reported results can’t prove a treatment works. People who improve are more likely to share, and tinnitus responds strongly to expectation. That’s why the Ledger records every outcome the same way, labels where the details came from, and points to real research — so the record is useful to patients, doctors and researchers alike.
The Tinnitus Mental Fitness Model book cover
Started by a fellow patient

From the author of The Tinnitus Mental Fitness Model

Diallo Kantambu has lived with tinnitus for more than three decades. His book is a peer-to-peer guide to changing your relationship with the sound — and the Ledger grows out of the same belief: people with tinnitus can help each other far more than they’re given credit for.

Every visit you document helps someone you’ll never meet.

Be heard. Be counted. Pay it forward.