Pulsatile tinnitus

I developed pulsatile tinnitus after a penetrating ear injury that perforated my eardrum, fractured the Incus hearing bone & pushed the Stapes into my vestibule (balance system). I’ve had 3 ear surgeries since 1/2/2/2024. The first surgery was to repair the injuries and the last two surgeries were to graft and seal a perilymph fistula. Right after my first surgery, I had pulsatile tinnitus that turned into a roaring ocean. It was an ocean like sound until I returned to work in May. After I returned to work, it turned to pulsatile. It was very difficult to sleep. When I woke up from my last surgery in May, the pulsatile tinnitus was gone and my tinnitus was a low cricket/locust sound. I was so happy it was gone. That was short lived though. The roaring ocean has since returned and becomes pulsatile when I am at rest in the evenings. I believe the roaring ocean has returned due to another failed perilymph fistula graft.

I developed Pulsatile Tinnitus almost 3 years ago. It has caused me immense distress. It is a constant hissing whooshing in both ears in prefect accord with my heart beat. So I hear my A Fib exactly. I had a cardiac ablation 5 months ago & still hear the AFib. I've been to ENT, CT scans, temporal bone x-rays, interventional radiologist, had brain angiogram & venogram, Manometry test, none of which has been able to ID the underlying cause. I had 2 Covid 19 shots & 2 boosters and then contacted Covid, pretty mild case - then the PT showed up.
Has anyone suffered similarly and been able to find a treatment or cure the PT?
Thank you!

I had the same thing for over 2 years. I went through the same testing, and tons of blood work and they couldn't tell me anything about what was causing it! I even had an angiogram! Finally, my bones were hearting all over my body, so my doctor ordered a lot of blood, including an inflammation marker test with high inflammation marks. They gave me one month of steroids. I am much better now, the constant whooshing is gone, except when I exercise!

Now, I am waiting biopsy on my forehead because there is growth in my sinus bone! I am still not done, but I think the steroid helps! I will update you along the way. Hang in there and good luck.

@za5045
Thanks SO much for your reply. I so grateful for even a glimmer of hope. I can get my Dr. to order the inflammation marker test. I really appreciate your note to update me along the way,
Best regards, Carol

I see this is an older post. But I wanted to add that I had mild intermittent irregular heartbeat for years. After I got 2 shots & the 2 boosters & a breakthrough mild Covid infection, the PT started and the irregular heartbeat became Paroxysmal A fib badly enough that I was sometimes nearly passing out. I had a cardiac ablation 5 months ago. I still have the irregular heartbeat and PT is as bad as ever. Unbearable when I'm tired or stressed.
I'm very grateful that I've found this site, perhaps there is hope of some kind.
Thank you,
Carol

Hi Morninglory, which steroid please? name of, thx. My PT is 24/7

I have PT also when I’m not hydrated consistently. I also think it might have something to do with dysautonomia…dysfunction of nerves that regulate non voluntary body functions like heart rate, breathing, blood pressure. When I stay hydrated and get enough electrolytes it helps. Hope you’re feeling better.

IC PREDNISONE 10 MG TABLET. I was subscribed for two weeks twice daily, But it caused insomnia so, I only take 1 in the morning! My DR. was okay with it.
Good Luck. Zina

Perilymph Fistulas are hard to diagnose and most often times are not able to be seen on imaging because the amount of fluid leaking is such a small amount. When they put air pressure in my ear, it causes nystagmus and vertigo. Also, if I seal my ear with the tragus and pump the tragus, it causes the same symptoms. I’ve had two surgeries for perilymph fistula, but the grafts keeps failing. They were able to visualize the fistula’s during surgery. There is a Facebook group called Perilymphatic Fistula. Lots of similar stories.

I have PT and I really hate it. Have been to the ENT doctors, had a ton of tests done. Turns out I have a growth on one of the bones; they can't do surgery to remove the growth because it is too close to the facial nerve that runs down the left side of my face. Such is life; there are far worse things.