The Tinnitus Relief I Discovered by Accident

After more than 30 years of living with tinnitus, an unexpected medication brought temporary relief. Now I'm asking doctors to investigate whether it could help others.

An old seizure drug called primidone (brand name Mysoline) has given me real, temporary relief from my tinnitus, and I'm asking ENTs to find out whether it can do the same for some of their patients.

Let me be clear from the start: primidone is not a cure. It doesn't repair the damage that causes tinnitus, and the noise returns. It offers periods of relief, and for anyone living with constant noise, that matters.

I'm not a doctor or a researcher. I'm a patient who wrote a book about managing tinnitus, The Tinnitus Mental Fitness Model. One person's experience proves nothing on its own. But it can give someone with the training, and the patients, a reason to take a closer look.

This article tells you what happened to me, what my doctor and I learned about dosing, and why I think a careful trial is a reasonable step.

How I found it

I found primidone by accident. I have essential tremor, a neurological condition that causes rhythmic shaking, mostly in the hands. I first noticed it in my mid-twenties, and it runs in my family.

In my seventies, the tremor worsened, so I mentioned it to my primary care physician. He prescribed primidone. Neurologists commonly use it for epilepsy, but primary care doctors also prescribe it for essential tremor, and it calmed the shaking as expected.

What neither of us expected was the effect on my tinnitus. Within days, the noise was noticeably lower, not gone, but less than I had lived with for decades.

Why it might work

Primidone calms overactive nerve signaling, and overactive signaling in the auditory pathways is widely thought to be a major source of tinnitus. Think of it as turning down the volume on overactive nerves.

Most chronic tinnitus starts with damage to the inner ear's hair cells. With less input arriving, the brain increases activity in its hearing centers to compensate. Many researchers believe that extra activity is what we hear as ringing, hissing, or buzzing.

Primidone was developed for epilepsy, a condition of overactive nerve firing, and later found to help essential tremor. It seems reasonable that a drug that quiets overactive firing in those conditions might also quiet it in the hearing system. That is a hypothesis, not a proven fact, and it's exactly what I hope a doctor will test.

The idea isn't entirely new. In the early 1980s, ENT surgeons John Shea and John Emmett tried primidone and similar drugs on tinnitus patients and called the approach promising. They stopped because of side effects at regular daily doses, and the research moved on. Today, no drug is approved to relieve tinnitus. What may be new is the intermittent schedule I describe below, which could make the drug easier to tolerate.

The catch, and the schedule my doctor and I worked out

I took primidone every day, but it stopped helping my tinnitus after about five or six days. The noise climbed back to uncomfortable levels, as if my body had adjusted to the drug and restored its old balance. That self-correcting tendency is called homeostasis.

At first I simply stopped for five to ten days and let the noise settle before starting again. During those breaks, I used supplements such as GABA, magnesium, valerian root, and ashwagandha. They helped, but less effectively.

At my last visit, my doctor and I talked about this problem. He pointed out that primidone's half-life is roughly 10–15 hours and suggested skipping days so my body wouldn't have time to adjust. This is the schedule I use now:

In other words, I take it Monday, Wednesday, and Friday and skip the weekend. When my tinnitus is under control, I sometimes don't start another week until I have a flare-up. There's no fixed rule beyond the goal of keeping my body from adapting, and so far it works for me.

My dose is low: one 50 mg tablet on each dosing day. When I started, my doctor had me take half a tablet, 25 mg, for two weeks before moving up to the full 50 mg. For comparison, essential tremor doses can go as high as 750 mg a day.

That gentle start may be the most useful thing in this article. Most of primidone's side effects come in the first few days, and starting at half a tablet gives the body time to adjust. If you and your doctor decide to try it, ask about starting the same way.

A note for physicians: primidone is partly converted in the body to phenobarbital and another active compound, and phenobarbital stays in the body for several days. So even on my days off, some of the drug's effect is likely still present. That may be part of why this schedule works, and it's worth considering in any trial.

Why a trial is a reasonable step

Primidone isn't approved for tinnitus, so a doctor would be prescribing it off-label. Off-label prescribing is legal and common in the United States, and doctors are most comfortable with it when a drug is well understood. Primidone is:

• Well known. It has been prescribed for epilepsy since the 1950s and is widely used for essential tremor.

• Inexpensive. It's available as a generic.

• Predictable. Its side effects are well documented and usually mild. The most common side effects, drowsiness, dizziness, unsteadiness, and nausea, tend to appear in the first few days and often fade as the body adjusts.

It isn't right for everyone. Some people react poorly to the first doses, which is why doctors start low and increase slowly. It interacts with other medications, and it can affect balance and alertness, which matters for older patients. Because it's converted to phenobarbital, stopping it or changing the dose should be done under a doctor's guidance. These are decisions for a physician to make with each patient.

What I'm asking

To ENTs and other physicians: you likely already know primidone from treating tremor or seizures. I'm not asking you to try something unfamiliar, only a familiar drug for a new purpose. If you have a tinnitus patient who has tried other options and is a reasonable candidate, consider a monitored trial of primidone. Watch for whether the noise drops, how long the effect lasts, and whether an intermittent schedule keeps it working. Then share what you find, whether it helps or not.

To patients: please don't try to get primidone on your own or change any medication you already take. If this interests you, print this article and bring it to your doctor. Let your doctor decide whether it makes sense for you.

I filed a provisional patent application on this use of primidone. I didn't do it to make money. I did it to put the idea on record and get it noticed by someone who can study it properly. If it helps even some of the millions of people living with tinnitus, it will have been worth it.