Hello,
I am new to this site and was wondering if anyone has any advice or is in a similar situation to mine.
I have tinnitus and was told I had pulsatile tinnitus after a hearing test in late 2021. My problem started around the summer of 2021. At the time, I was going through a lot of stress and had been dealing with anxiety disorders, OCD, and social anxiety for years.
Around that time, two things happened. First, I had shingles in my left groin area. Second, I believe I had a chest infection, though I was never officially diagnosed because I was unable to see my GP due to COVID restrictions. No medication was given, and while my chest was painful at the time, the pain eventually faded. I don't know if either of these events contributed to my tinnitus.
Around that same period, I experienced a sudden blast of sound through my earphones while working on music production. I didn't think much of it at the time, but I lowered the volume. If I remember correctly, it didn't seem particularly loud, but I turned it down just in case. I don't recall which ear was affected since I sometimes wore only one earphone at a time. Since then, I have not used headphones or earbuds.
Also, around that time, I remember tickling my ear aggressively in my sleep due to an itch deep inside. The next morning, I woke up with a fluttering sensation in my right ear, which I first noticed when I got out of bed. I assumed it would pass, but nearly four years later, it is still there.
During this stressful period, with COVID and my OCD fears intensifying, I was also withdrawing from a medication called Abilify. Under my doctor's guidance, I tapered from 10 mg to 0 mg due to concerns about developing diabetes (though I am not diabetic). I noticed that the fluttering sensation started around the time my dose reached 2 or 2.5 mg. I will never know for sure what triggered it, but I suspect high stress played a role. I have been taking Fluoxetine (Prozac) for 20 years and continue to take it.
Through my research, I believe the fluttering, spasm, or whooshing sensation I feel (more than hear) in my right ear may be related to the tensor tympani muscle or nerve. My symptoms have remained the same since the problem began. My voice—specifically, my internal voice—triggers a fluttering, spasm-like whoosh in my right ear immediately after the last word I speak. I can talk continuously for long periods, but as soon as I stop speaking, the last word I say triggers this fluttering sensation.
My ear also reacts to high-pitched sounds, such as cutlery hitting plates in quiet environments, causing the same spasm/fluttering reaction. I have been diagnosed with hyperacusis after undergoing a sound pain threshold test, but only my right ear is affected. Occasionally, I experience mild twitching in my left ear, but nothing comparable to what happens in my right ear.
Medical Investigations and Findings
I have been evaluated by specialists within the NHS, but the experience has been frustrating. I often feel like I am not being taken seriously, and the lack of understanding and follow-up has made the process feel like a waste of time. Private specialists have been more helpful, but the financial burden has been significant.
My first MRI scan was done privately, focusing on my internal auditory meatus (IAM). It revealed atrophy of the right cochlear nerve, meaning the nerve is shorter than the one in my left ear and does not match the length of the facial nerve, as it typically should. However, my ENT specialist did not provide any follow-up, and when I mention this finding to other specialists, they seem unfamiliar with its significance.
A later MRI scan through the NHS showed vascular abutment of the cranial nerves VII (facial nerve) and VIII (cochlear nerve), but this time on the left side of my face. Specialists dismissed this as an incidental finding, suggesting I could have been born with it. However, my pulsatile tinnitus—specifically, the heartbeat sound in my left ear—has worsened over the past four years, so I doubt it was always there.
I also have cervical spine issues and TMJ, particularly on the right side of my face, and I have often wondered if these could be contributing factors.
Challenges with Treatment and Diagnosis
The lack of follow-up from specialists has been frustrating. I feel like I am not being taken seriously and have had to do my own research to find the right departments and specialists.
The possible diagnoses I have received include:
Some specialists have suggested cutting the tensor tympani, stapedius, and another nerve, but they admit that this is only a guess. They have also warned that such surgery could worsen my symptoms, increasing my tinnitus and hyperacusis. Given the risks, I have not pursued this option.
I had my Eustachian tubes checked, and they were found to be functioning normally. However, I was diagnosed with moderate rhinitis and sinusitis.
Additional Observations
For years, I have also noticed that I can voluntarily control a rumbling sound in my ears by forcefully closing my eyes. I used to think this was normal, but I've since learned that it is relatively rare.
Another strange occurrence was that after undergoing microsuction ear cleaning two years ago, the fluttering in my ear completely disappeared for a day—the longest relief I have ever had. However, it returned the next day after I got out of bed.
I have also realized that I cannot wink with my right eye—only my left. I wonder if this could indicate a nerve issue. Sometimes, rubbing my right eye can cause mild movement in my ear, but it is nothing compared to the strong reaction triggered by sound or touch.
Hearing Test Results
Hearing tests show that I have mild high-frequency hearing loss in one ear.
Ian
I am new to this site and was wondering if anyone has any advice or is in a similar situation to mine.
I have tinnitus and was told I had pulsatile tinnitus after a hearing test in late 2021. My problem started around the summer of 2021. At the time, I was going through a lot of stress and had been dealing with anxiety disorders, OCD, and social anxiety for years.
Around that time, two things happened. First, I had shingles in my left groin area. Second, I believe I had a chest infection, though I was never officially diagnosed because I was unable to see my GP due to COVID restrictions. No medication was given, and while my chest was painful at the time, the pain eventually faded. I don't know if either of these events contributed to my tinnitus.
Around that same period, I experienced a sudden blast of sound through my earphones while working on music production. I didn't think much of it at the time, but I lowered the volume. If I remember correctly, it didn't seem particularly loud, but I turned it down just in case. I don't recall which ear was affected since I sometimes wore only one earphone at a time. Since then, I have not used headphones or earbuds.
Also, around that time, I remember tickling my ear aggressively in my sleep due to an itch deep inside. The next morning, I woke up with a fluttering sensation in my right ear, which I first noticed when I got out of bed. I assumed it would pass, but nearly four years later, it is still there.
During this stressful period, with COVID and my OCD fears intensifying, I was also withdrawing from a medication called Abilify. Under my doctor's guidance, I tapered from 10 mg to 0 mg due to concerns about developing diabetes (though I am not diabetic). I noticed that the fluttering sensation started around the time my dose reached 2 or 2.5 mg. I will never know for sure what triggered it, but I suspect high stress played a role. I have been taking Fluoxetine (Prozac) for 20 years and continue to take it.
Through my research, I believe the fluttering, spasm, or whooshing sensation I feel (more than hear) in my right ear may be related to the tensor tympani muscle or nerve. My symptoms have remained the same since the problem began. My voice—specifically, my internal voice—triggers a fluttering, spasm-like whoosh in my right ear immediately after the last word I speak. I can talk continuously for long periods, but as soon as I stop speaking, the last word I say triggers this fluttering sensation.
My ear also reacts to high-pitched sounds, such as cutlery hitting plates in quiet environments, causing the same spasm/fluttering reaction. I have been diagnosed with hyperacusis after undergoing a sound pain threshold test, but only my right ear is affected. Occasionally, I experience mild twitching in my left ear, but nothing comparable to what happens in my right ear.
Medical Investigations and Findings
I have been evaluated by specialists within the NHS, but the experience has been frustrating. I often feel like I am not being taken seriously, and the lack of understanding and follow-up has made the process feel like a waste of time. Private specialists have been more helpful, but the financial burden has been significant.
My first MRI scan was done privately, focusing on my internal auditory meatus (IAM). It revealed atrophy of the right cochlear nerve, meaning the nerve is shorter than the one in my left ear and does not match the length of the facial nerve, as it typically should. However, my ENT specialist did not provide any follow-up, and when I mention this finding to other specialists, they seem unfamiliar with its significance.
A later MRI scan through the NHS showed vascular abutment of the cranial nerves VII (facial nerve) and VIII (cochlear nerve), but this time on the left side of my face. Specialists dismissed this as an incidental finding, suggesting I could have been born with it. However, my pulsatile tinnitus—specifically, the heartbeat sound in my left ear—has worsened over the past four years, so I doubt it was always there.
I also have cervical spine issues and TMJ, particularly on the right side of my face, and I have often wondered if these could be contributing factors.
Challenges with Treatment and Diagnosis
The lack of follow-up from specialists has been frustrating. I feel like I am not being taken seriously and have had to do my own research to find the right departments and specialists.
The possible diagnoses I have received include:
- Middle Ear Myoclonus
- Tympanic Neuralgia
Some specialists have suggested cutting the tensor tympani, stapedius, and another nerve, but they admit that this is only a guess. They have also warned that such surgery could worsen my symptoms, increasing my tinnitus and hyperacusis. Given the risks, I have not pursued this option.
I had my Eustachian tubes checked, and they were found to be functioning normally. However, I was diagnosed with moderate rhinitis and sinusitis.
Additional Observations
- My symptoms seem related to tinnitus because when I am in a moving car or outside, I do not experience the fluttering sensation while talking. The background noise, such as a car engine, seems to mask it.
- If I stretch, cough, or yawn, I experience the whoosh/fluttering sensation.
- Touching my right ear sets off the fluttering, and surprisingly, even touching my left ear (which is free of tinnitus) can trigger movement in my right ear.
- Performing the Valsalva maneuver temporarily stops the fluttering for about five minutes before it returns.
- Diazepam helps calm my ear, but the effect wears off quickly, and then it's back to being unbearable.
For years, I have also noticed that I can voluntarily control a rumbling sound in my ears by forcefully closing my eyes. I used to think this was normal, but I've since learned that it is relatively rare.
Another strange occurrence was that after undergoing microsuction ear cleaning two years ago, the fluttering in my ear completely disappeared for a day—the longest relief I have ever had. However, it returned the next day after I got out of bed.
I have also realized that I cannot wink with my right eye—only my left. I wonder if this could indicate a nerve issue. Sometimes, rubbing my right eye can cause mild movement in my ear, but it is nothing compared to the strong reaction triggered by sound or touch.
Hearing Test Results
Hearing tests show that I have mild high-frequency hearing loss in one ear.
Ian
