Please excuse grammar and spelling.
Here's my story so far about my experience with high-pitched pulsatile tinnitus.
Since February 2025, I've had a very high-pitched cardio rhythmic sound constantly, 24/7. Since this condition is extremely rare, bothersome, and in some cases dangerous, I thought I'd share my experience in case it helps anyone looking for answers.
My first attempt at getting to the bottom of this strange squeaky sound that was disturbing my sleep and daily life was seeing an Audiologist. You can probably guess that I didn't get direct answers there. However, the appointment wasn't wasted, because it led me to other sources and specialists which eventually led me to an actual diagnosis.
After the Audiologist, I paid privately to have a consultation with an ENT consultant in Nuffield. He advised a CT angiogram and venogram. Since I was eager to get to the bottom of this, I also paid privately to have the scan in Taunton as suggested by the ENT consultant. The results came back clear. The results were relayed to me by the consultant in Nuffield. He said everything was clear and suggested meditation. I took his word on this, walked back to the car, went to drive off, and turned to my wife and said, Wait, if the high-pitched pulsatile tinnitus is objective, not subjective, then how will meditation help? We both agreed. I wasn't going to give up.
I then tried my GP. This was an eye-opener because the GP had never heard of such a thing. While examining me with a stethoscope, I said, Try just your ear near the left side of my head, and you'll hear what I'm hearing. I knew this because my wife had already done the same thing. The doctor put his ear next to my head and heard it. He jumped back in amazement and said he'd never heard anything like that before. He referred me to ENT at my local hospital.
I knew the hospital referral wouldn't be quick due to large waiting lists, and I had nowhere else to turn until reaching a specialist. Meanwhile, the high-pitched pulsatile tinnitus kept me awake night after night, at 2, 3, 4 in the morning. I researched, read medical journals, found this blog, and kept looking. Then one very late night I came across a very interesting gentleman: Mr. Patrick R. Axon. He gave me great hope. I contacted Mr. Axon and his secretary. The result was that he knew exactly what the noise was and what procedure was needed to diagnose the issue. I traveled to Cambridge to see Mr. Axon, for only about 20 minutes with him and a 5-hour journey one way, but it was well worth the time and cost. This was around June 2025 and I had still heard nothing from the hospital referral.
Things went back and forth between myself and Mr. Axon through his excellent secretary. Around July 2025, the hospital referral came through to see Mr. Williams, an ENT specialist. During this consultation he kind of dismissed my explanation of the condition until he said, let's go and listen in a soundproof room. In other words, he didn't know or had never come across this before, even though I had a letter from Mr. Axon explaining it. He, along with some students and myself, went into the soundproof room. Mr. Williams tried to hear it first with no result and said his hearing wasn't the best. Then he asked a student to try with young hearing, and the student heard the pulsatile tinnitus immediately. They were in shock. Mr. Williams knew a neurological specialist in another hospital. He wrote to him and asked if he'd take me on. I finally felt hope again.
In October 2025, I finally had a real breakthrough. The new hospital and the neurological department attended MDT meetings every Thursday to discuss my case. Eventually, they took me on. I'm now writing this from my recovery bed at home after the procedure they performed yesterday on the 27th of November 2025. The procedure was a cerebral angiogram, and I now have an actual diagnosis. I still have the high-pitched pulsatile tinnitus, but I now have answers.
The diagnosis is dural arteriovenous fistula. Mine is stage one and not in a dangerous location in the head. There are other stages and positions that require more urgent treatment.
I'm not an expert, and this is my personal experience of high-pitched pulsatile tinnitus. Please don't take this as medical advice. It's simply my story.
What I will say is this: if anyone is experiencing something similar, please seek advice. Even though my diagnosis isn't directly dangerous, some dural arteriovenous fistulas can be. You can contact the specialists I've mentioned, and if you want, reply to me in this forum. I'll try to respond and help, because I know how irritating, lonely, and horrible this condition can be.
Whoever is reading this, I sincerely hope you find answers.
Here's my story so far about my experience with high-pitched pulsatile tinnitus.
Since February 2025, I've had a very high-pitched cardio rhythmic sound constantly, 24/7. Since this condition is extremely rare, bothersome, and in some cases dangerous, I thought I'd share my experience in case it helps anyone looking for answers.
My first attempt at getting to the bottom of this strange squeaky sound that was disturbing my sleep and daily life was seeing an Audiologist. You can probably guess that I didn't get direct answers there. However, the appointment wasn't wasted, because it led me to other sources and specialists which eventually led me to an actual diagnosis.
After the Audiologist, I paid privately to have a consultation with an ENT consultant in Nuffield. He advised a CT angiogram and venogram. Since I was eager to get to the bottom of this, I also paid privately to have the scan in Taunton as suggested by the ENT consultant. The results came back clear. The results were relayed to me by the consultant in Nuffield. He said everything was clear and suggested meditation. I took his word on this, walked back to the car, went to drive off, and turned to my wife and said, Wait, if the high-pitched pulsatile tinnitus is objective, not subjective, then how will meditation help? We both agreed. I wasn't going to give up.
I then tried my GP. This was an eye-opener because the GP had never heard of such a thing. While examining me with a stethoscope, I said, Try just your ear near the left side of my head, and you'll hear what I'm hearing. I knew this because my wife had already done the same thing. The doctor put his ear next to my head and heard it. He jumped back in amazement and said he'd never heard anything like that before. He referred me to ENT at my local hospital.
I knew the hospital referral wouldn't be quick due to large waiting lists, and I had nowhere else to turn until reaching a specialist. Meanwhile, the high-pitched pulsatile tinnitus kept me awake night after night, at 2, 3, 4 in the morning. I researched, read medical journals, found this blog, and kept looking. Then one very late night I came across a very interesting gentleman: Mr. Patrick R. Axon. He gave me great hope. I contacted Mr. Axon and his secretary. The result was that he knew exactly what the noise was and what procedure was needed to diagnose the issue. I traveled to Cambridge to see Mr. Axon, for only about 20 minutes with him and a 5-hour journey one way, but it was well worth the time and cost. This was around June 2025 and I had still heard nothing from the hospital referral.
Things went back and forth between myself and Mr. Axon through his excellent secretary. Around July 2025, the hospital referral came through to see Mr. Williams, an ENT specialist. During this consultation he kind of dismissed my explanation of the condition until he said, let's go and listen in a soundproof room. In other words, he didn't know or had never come across this before, even though I had a letter from Mr. Axon explaining it. He, along with some students and myself, went into the soundproof room. Mr. Williams tried to hear it first with no result and said his hearing wasn't the best. Then he asked a student to try with young hearing, and the student heard the pulsatile tinnitus immediately. They were in shock. Mr. Williams knew a neurological specialist in another hospital. He wrote to him and asked if he'd take me on. I finally felt hope again.
In October 2025, I finally had a real breakthrough. The new hospital and the neurological department attended MDT meetings every Thursday to discuss my case. Eventually, they took me on. I'm now writing this from my recovery bed at home after the procedure they performed yesterday on the 27th of November 2025. The procedure was a cerebral angiogram, and I now have an actual diagnosis. I still have the high-pitched pulsatile tinnitus, but I now have answers.
The diagnosis is dural arteriovenous fistula. Mine is stage one and not in a dangerous location in the head. There are other stages and positions that require more urgent treatment.
I'm not an expert, and this is my personal experience of high-pitched pulsatile tinnitus. Please don't take this as medical advice. It's simply my story.
What I will say is this: if anyone is experiencing something similar, please seek advice. Even though my diagnosis isn't directly dangerous, some dural arteriovenous fistulas can be. You can contact the specialists I've mentioned, and if you want, reply to me in this forum. I'll try to respond and help, because I know how irritating, lonely, and horrible this condition can be.
Whoever is reading this, I sincerely hope you find answers.
