I Developed Typewriter Tinnitus After Having Regular Tinnitus for Six Years

[Chezten]

Hi, Cheryl here.

I think I've developed what's called Typewriter Tinnitus after having regular tinnitus in my left ear for six years. About seven months ago, I started experiencing rattlesnake-like sensations in my ears and upper jaw, mostly when I was out and talking in loud environments, but sometimes even when just sitting down in the afternoon.

I suspect the change happened after a kinesiology treatment (neurological) which made me groan and feel emotional.

Currently, I'm taking a tricyclic medication called Endep to help with sleep. I had an MRI that showed what was supposedly an incidental finding, a vascular loop sitting on my vestibulocochlear nerve, which I believe is consistent with Typewriter Tinnitus. However, the neurosurgeon says I need to see a neurologist, and he seems unsure of the diagnosis.

I have an appointment with a neurologist in November 2024, and I hope to try Carbamazepine, though I would prefer to manage these spasms naturally.

I've also scheduled a visit with a local ENT specialist to run some preliminary tests. I have sleep apnea, and a previous ENT diagnosed me with narrow nasal passages. I've been doing nasal rinses followed by steroid sprays, but there hasn't been any change. I restarted this routine before seeing the new ENT, who may diagnose Eustachian Tube Dysfunction. I feel my sinuses are reasonably clear, although I have been using a CPAP machine for two years.

I have slight hearing loss in one ear, but my TMJ seems okay. For treatment, I've tried osteopathy on my neck and inside my mouth, dry needling around my neck, trigeminal nerve, and ear. I also tried My Sound Therapy, which is based on the Tomatis Method and is supposed to help with hearing loss, hyperacusis, and in turn tinnitus. It cost 600 AUD but unfortunately did not help and possibly made things worse.

I usually feel fairly relaxed upon waking and do not feel anxious, so there does not seem to be an obvious trigger. I do tend to wake up a bit startled, but that settles once I get moving. I think it is just the higher cortisol levels in the morning.

Cheers,
Cheryl (Australia)

 

[delta784]

I have the same kind of tinnitus. Does yours sound like Morse code beeps, or is it different? And have you ever used Prednisone? Mine was caused by that.

 

[Chezten]

I have the same kind of tinnitus. Does yours sound like Morse code beeps, or is it different? And have you ever used Prednisone? Mine was caused by that.

Yes, like Morse code—sometimes super fast. On good days, after waking up and moving around, it morphs into a fridge-like humming noise. Then, as the day goes on, the constant tapping usually starts again.

 

[delta784]

Yes, like Morse code—sometimes super fast. On good days, after waking up and moving around, it morphs into a fridge-like humming noise. Then, as the day goes on, the constant tapping usually starts again.

Since I'm young, it's not very noticeable, but I think it will get much worse as I get older.

 

[EDDTEKK]

I had severe typewriter tinnitus as well. After struggling for nearly two years without a clear diagnosis, I contacted a neurosurgeon. Based on our analysis of the test results, he suggested microvascular decompression surgery. While he couldn't guarantee that the symptoms would disappear, he said there was a high chance of improvement based on his experience.

We conducted high-definition MRI scans and auditory brainstem response audiometry. Initially, the symptoms disappeared after taking carbamazepine, but unfortunately, the medication stopped being effective after about five months.

My typewriter tinnitus was triggered by external sounds and gradually became more consistent and permanent. I was suffering so badly that, in the end, I decided to undergo the surgery. I consulted several doctors in my country to get different opinions, and I waited a year before going through with it.

It took another two years to see mixed results, but today my symptoms are 80%-100% reduced, almost gone. I was told that healing might take up to three years, although the most significant and fastest improvement typically happens within the first year. My case seems to be an exception. I'm not sure if my current state will remain stable, and I can't say with complete certainty if the surgery was the sole reason for the improvement.

 

[Chezten]

I had severe typewriter tinnitus as well. After struggling for nearly two years without a clear diagnosis, I contacted a neurosurgeon. Based on our analysis of the test results, he suggested microvascular decompression surgery. While he couldn't guarantee that the symptoms would disappear, he said there was a high chance of improvement based on his experience.

We conducted high-definition MRI scans and auditory brainstem response audiometry. Initially, the symptoms disappeared after taking carbamazepine, but unfortunately, the medication stopped being effective after about five months.

My typewriter tinnitus was triggered by external sounds and gradually became more consistent and permanent. I was suffering so badly that, in the end, I decided to undergo the surgery. I consulted several doctors in my country to get different opinions, and I waited a year before going through with it.

It took another two years to see mixed results, but today my symptoms are 80%-100% reduced, almost gone. I was told that healing might take up to three years, although the most significant and fastest improvement typically happens within the first year. My case seems to be an exception. I'm not sure if my current state will remain stable, and I can't say with complete certainty if the surgery was the sole reason for the improvement.

I am seeing an interventional neurologist on November 12, 2024. My symptoms are getting worse with loud, rapid clicking in my left ear and a rhythmic sound in my right ear that matches my heartbeat. I hope to get some answers because I am not coping well at all.

 

[Nick47]

I have an appointment with a neurologist in November 2024, and I hope to try Carbamazepine, though I would prefer to manage these spasms naturally.

Yes, Carbamazepine is the Gold standard treatment. I would give that a go before invasive surgery.

 

[Yellowblue44]

Yes, Carbamazepine is the Gold standard treatment. I would give that a go before invasive surgery.

Did Carbamazepine work for you?

 

[Nick47]

Did Carbamazepine work for you?

I don't have typewriter tinnitus.

 

[EDDTEKK]

Carbamazepine can help suppress the symptoms and is the only antiepileptic drug known to be effective for this. However, please make sure to consult your neurologist.

It may either alleviate your symptoms or cause serious side effects, which might require you to stop taking it. I took 400 mg per day, which helped me become completely symptom-free. Unfortunately, in my case, the medication stopped working after about five months. I tried increasing the dosage, but this didn't help, and Oxcarbazepine wasn't effective either. So, as a last option, I decided to pursue surgery.

Here's an article about the support in diagnosing typewriter tinnitus with ABR:

Typewriter Tinnitus: Value of ABR as a Diagnostic and Prognostic Indicator - PMC

Typewriter tinnitus refers to a special kind of staccato tinnitus, which is mostly described by patients as Morse code, popcorn, or machine-gun. It has been accepted that the mechanism of typewriter tinnitus is caused by the neurovascular ...

pmc.ncbi.nlm.nih.gov

According to the study, it appears that for some people, the symptoms remain gone even after they stop taking Carbamazepine.

It's something you may need to try and see for yourself.

 

[Chezten]

Yes, Carbamazepine is the Gold standard treatment. I would give that a go before invasive surgery.

I saw a neurologist yesterday. He thought my MRI was consistent with typewriter tinnitus. He basically asked me which drug I'd like to try: Carbamazepine or Cyclobenzaprine. Carbamazepine is specifically for typewriter tinnitus, but he explained that many people experience negative reactions to it. He advised trying Cyclobenzaprine first, as it's a strong muscle relaxant. This is used for a short term only, about 3 weeks. However, if the spasms are due to a hypersensitive nervous system, sometimes this is enough to calm it down.

 

[Chezten]

Carbamazepine can help suppress the symptoms and is the only antiepileptic drug known to be effective for this. However, please make sure to consult your neurologist.

It may either alleviate your symptoms or cause serious side effects, which might require you to stop taking it. I took 400 mg per day, which helped me become completely symptom-free. Unfortunately, in my case, the medication stopped working after about five months. I tried increasing the dosage, but this didn't help, and Oxcarbazepine wasn't effective either. So, as a last option, I decided to pursue surgery.

Here's an article about the support in diagnosing typewriter tinnitus with ABR:

Typewriter Tinnitus: Value of ABR as a Diagnostic and Prognostic Indicator - PMC

Typewriter tinnitus refers to a special kind of staccato tinnitus, which is mostly described by patients as Morse code, popcorn, or machine-gun. It has been accepted that the mechanism of typewriter tinnitus is caused by the neurovascular ...

pmc.ncbi.nlm.nih.gov

According to the study, it appears that for some people, the symptoms remain gone even after they stop taking Carbamazepine.

It's something you may need to try and see for yourself.

Thanks, @EDDTEKK. I have purchased the Carbamazepine but have not started taking it yet. I am waiting for the Cyclobenzaprine (muscle relaxant) to arrive from Canada. Today, both my ear and the area above my ears are spasming badly. Strangely, it stopped yesterday after a swim in the ocean.

I am scared about surgery because it seems both sides of my head are affected, and it is an invasive procedure. How are you feeling now? I hope you are continuing to find relief.

I do not understand how my spasms seem to move from my ears to my neck and even my jaw through my teeth. They seem to go in a circle, as if one nerve is exciting the others. It is not painful like trigeminal neuralgia, but at times it is extremely forceful.

Regards and best wishes to you. Thanks for responding.

 

[EDDTEKK]

How are you feeling now? I hope you are continuing to find relief.

Hi Cheryl,

I am doing really well, and I truly hope it continues this way! My life has completely changed.

In my case, it was very difficult for the doctors to determine if I had the AICA loop or not. My right ear was more affected than my left, where only minimal contact between the vessel and the nerve was detected. However, I experienced symptoms only in my right ear.

In the end, I decided to undergo the surgery at my own risk.

I was very scared and worried that my classic tinnitus, which I already had in addition to the typewriter tinnitus, would worsen or escalate. It was a very challenging time.

First, I recommend reviewing the medication you mentioned and discussing it with your doctors. It might help.

For your information, I had the operation three years after my symptoms began.

Feel free to reach out if you have more questions.

 

[Slaw]

Wow, I feel I could have written much of this.

What does/did your typewriter tinnitus sound like (anyone in this thread)?

Hi Cheryl,

I am doing really well, and I truly hope it continues this way! My life has completely changed.

In my case, it was very difficult for the doctors to determine if I had the AICA loop or not. My right ear was more affected than my left, where only minimal contact between the vessel and the nerve was detected. However, I experienced symptoms only in my right ear.

In the end, I decided to undergo the surgery at my own risk.

I was very scared and worried that my classic tinnitus, which I already had in addition to the typewriter tinnitus, would worsen or escalate. It was a very challenging time.

First, I recommend reviewing the medication you mentioned and discussing it with your doctors. It might help.

For your information, I had the operation three years after my symptoms began.

Feel free to reach out if you have more questions.

Last week, the typewriter tinnitus I had in my right ear (which has hearing loss of unknown origin and other severe to catastrophic tinnitus sounds) became continual. It is un-maskable by any sound.

It is like this, but imagine it at a high volume:



On my scan, I can kind of see an AICA loop or nerve contact by the canal, or at least by the right ear. (I have had severe tinnitus in the left ear for >5.5 years.)

Do you know how nerve contact is detected for this? Did an ABR show that?

I was on Carbamazepine on and off for the previous beeping and other stuff, but I might be like you where it no longer does anything.

I am not sure how to be productive with an intense chirping in my head, so I am trying to reduce this, at least.

I saw a neurologist yesterday. He thought my MRI was consistent with typewriter tinnitus. He basically asked me which drug I'd like to try: Carbamazepine or Cyclobenzaprine. Carbamazepine is specifically for typewriter tinnitus, but he explained that many people experience negative reactions to it. He advised trying Cyclobenzaprine first, as it's a strong muscle relaxant. This is used for a short term only, about 3 weeks. However, if the spasms are due to a hypersensitive nervous system, sometimes this is enough to calm it down.

Did this help you?

 

[Chezten]

Hi @Slaw,

Unfortunately, the Carbamazepine didn't help. It made me tired, itchy, and a bit depressed.

I'm still waiting for the Cyclobenzaprine shipment from Canada (I'm in Australia). In the meantime, I'm considering revisiting my sound therapy tool based on the Alfred Tomatis method. I have a small device that looks like an old Walkman—around $600 Australian. It comes with a headband, earphones, and books explaining the method.

The program takes you through a series of classical music sessions, starting with a gentle massage. Initially, I had good results, but the later levels seemed to overstimulate my brain, so I stopped. The distributor advised me to stick with the gentle massage level.

The book is definitely worth a read, as it explains in great detail how Tomatis made his discovery. I've attached a file with the book cover for reference.

ChezTen

 

[Slaw]

Hi @Slaw,

Unfortunately, the Carbamazepine didn't help. It made me tired, itchy, and a bit depressed.

I'm still waiting for the Cyclobenzaprine shipment from Canada (I'm in Australia). In the meantime, I'm considering revisiting my sound therapy tool based on the Alfred Tomatis method. I have a small device that looks like an old Walkman—around $600 Australian. It comes with a headband, earphones, and books explaining the method.

The program takes you through a series of classical music sessions, starting with a gentle massage. Initially, I had good results, but the later levels seemed to overstimulate my brain, so I stopped. The distributor advised me to stick with the gentle massage level.

The book is definitely worth a read, as it explains in great detail how Tomatis made his discovery. I've attached a file with the book cover for reference.

ChezTen

View attachment 58681

What kind of massage is it? Are the vibrations from the headband related to the music?

@EDDTEKK, did an ABR test reveal anything connected to typewriter tinnitus? Are you suggesting it can identify nerve contact?

The sounds are extremely distracting. I wish I knew why they suddenly became permanent—or why I developed hearing loss and tinnitus in the first place.

 

[Chezten]

What kind of massage is it? Are the vibrations from the headband related to the music?

@EDDTEKK, did an ABR test reveal anything connected to typewriter tinnitus? Are you suggesting it can identify nerve contact?

The sounds are extremely distracting. I wish I knew why they suddenly became permanent—or why I developed hearing loss and tinnitus in the first place.

The device offers five levels of filtered classical music, which are said to "open up" and restore the inner ear muscles by exercising them with precise frequencies. The first level, called Gentle Massage, is the starting point.

I followed the program and initially thought I was seeing positive results, but later I felt it was overstimulating my brain. After discussing this with the supplier, they suggested I stay on the Gentle Massage level for a longer period. I gave it another try, but I have since stopped using the device because I am still unsure about its effectiveness.

It seems to help people with hyperacusis. However, the accompanying book includes reviews from individuals who claim it also helped with tinnitus.

 

[EDDTEKK]

Yes, an ABR test can help diagnose typewriter tinnitus or compression/contact between the artery and the auditory nerve. Please refer to the article linked above for more information.

However, many people have an AICA loop without ever experiencing symptoms in their lifetime. Therefore, it's essential to consult a specialist familiar with this condition.

 

[Chezten]

Yes, an ABR test can help diagnose typewriter tinnitus or compression/contact between the artery and the auditory nerve. Please refer to the article linked above for more information.

However, many people have an AICA loop without ever experiencing symptoms in their lifetime. Therefore, it's essential to consult a specialist familiar with this condition.

Thanks, @EDDTEKK.

I have an appointment with my neurologist on Wednesday, January 8, 2025. I don't think I've had an ABR test before. The ENT I saw conducted additional hearing tests and noted no eardrum movement during the spasms. I'm not sure who to contact to arrange an ABR test, but I'll look into it.

My symptoms seem to be getting more intense. Upon waking, I experience a typewriter-like sound on both sides of my head while lying still. Additionally, my left eye now pulsates. As the day progresses, the left side of my head throbs with a pulsating sound and a sensation of fullness. Movements like talking, eating, or moving my head seem to exacerbate the symptoms, which aligns more with Typewriter Tinnitus than with MEM.

 

[Slaw]

Thanks, @EDDTEKK.

I have an appointment with my neurologist on Wednesday, January 8, 2025. I don't think I've had an ABR test before. The ENT I saw conducted additional hearing tests and noted no eardrum movement during the spasms. I'm not sure who to contact to arrange an ABR test, but I'll look into it.

My symptoms seem to be getting more intense. Upon waking, I experience a typewriter-like sound on both sides of my head while lying still. Additionally, my left eye now pulsates. As the day progresses, the left side of my head throbs with a pulsating sound and a sensation of fullness. Movements like talking, eating, or moving my head seem to exacerbate the symptoms, which aligns more with Typewriter Tinnitus than with MEM.

Oh, is there a test to detect the spasms?

When your head throbs, is it focused on one specific spot? I experience something similar near my right ear, and my eyes seem to involuntarily close when it happens.

Yes, an ABR test can help diagnose typewriter tinnitus or compression/contact between the artery and the auditory nerve. Please refer to the article linked above for more information.

However, many people have an AICA loop without ever experiencing symptoms in their lifetime. Therefore, it's essential to consult a specialist familiar with this condition.

How did you find a specialist familiar with this, @EDDTEKK? I'm in the US.

It's incredibly frustrating that, despite having no quality of life due to the Morse code-like clicking, I'm not sure if I'll be able to get any appointments for tests anytime soon. Doctors often just rely on radiologists' reports, and I don't even know if the radiologists are capable of recognizing potential compression issues.

I actually wonder if my problem isn't exclusively neurovascular compression or MEM. Sometimes, when I move my head, something near my right ear throbs, and my eyes close involuntarily.

I've read about hemifacial spasms in the limited articles on typewriter tinnitus. It could be related. Some sources also suggest that spasms and clicking of the stapedius muscle might be associated.

 

[lukeg]

I have this type of MEM/Tensor tympani syndrome. I've read that Botox can help because it'll freeze the muscle that spasms. I've called all over New York and have seen multiple ENTs/Neuro Otologist and no one wants to do it. It's either cut it or nothing and the doctors who have done the cut before say they've regretted it for their patients every time and will not do it (not that I would). Does anyone have any idea of a doctor in New England who would be willing to do this?