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.