31-Year-Old with Mystery Morse Code/Typewriter Tinnitus for ~1 Year

[martap]

I was hoping I would be the lucky one that doesn't have to introduce herself here, but here I am. One day in the beginning of April 2021 I started hearing noises in my right ear. It was (and still is) a weird sound, a morse code type of sound like I was receiving a message from aliens. After a while I started hearing it in my left ear as well, but the tone is a bit different.

I went to a family doctor and 3 ENTs so far. My family doctor found fluid in my ear, but none of the ENTs did. The first ENT was the worst doctor I ever met. He did a hearing test which was perfect and then he basically told me to f**k off and never come back. The second ENT did a hearing test, which was normal as well, checked inside of my nose with a long camera and a MRI for acoustic neuroma. The third one wanted to do a hearing test of course, but I refused, he checked my Eustachian tubes and said there are signs of dysfunction. I got a steroid that didn't help and then I did pneumatic inhalation sessions (AMSA). It didn't improve my tinnitus at all.

I think maybe I am looking in wrong places. I don't think the second ENT looked for anything in my MRI other than an acoustic neuroma. I found this article (link below) about Carbamazepine and neurovascular compression of the cochlear nerve.

I am also considering TMJ (I have a night guard), I have pain in my temple and jaw frequently and sometimes after eating something chewy my ear explodes with a very loud sound that goes away after several seconds. Also when I move my ear muscles (I think they are called posterior auricular muscles, maybe?) the morse code beeping turns into a continuous loud beep. So, my theory right now is that something is compressing my nerve or something like that. I want to talk about this with my second ENT since I will have a follow up with him this month.

I am tired and unhappy, but stubborn to get this solved or at least try. I know I might never find out what caused it, but I am 31 and if there is any chance that I can improve my quality of life I will take it.

If anyone has similar experiences or advice on what to try or how to talk to doctors that are trying to push the hearing loss (which I don't have) diagnosis on me please let me know.

I am based in Ontario, Canada and every doctor except the third ENT was in Canada. The third ENT was in Poland. I am open to doctors from all over the world and I can travel if needed. One doctor that I have read a lot about here is doctor Dirk De Ridder, so I am thinking of consulting with him.

Typewriter tinnitus revisited: The typical symptoms and the initial response to carbamazepine are the most reliable diagnostic clues

 

[GregCA]

I was hoping I would be the lucky one that doesn't have to introduce herself here, but here I am. One day in the beginning of April 2021 I started hearing noises in my right ear. It was (and still is) a weird sound, a morse code type of sound like I was receiving a message from aliens. After a while I started hearing it in my left ear as well, but the tone is a bit different.

I went to a family doctor and 3 ENTs so far. My family doctor found fluid in my ear, but none of the ENTs did. The first ENT was the worst doctor I ever met. He did a hearing test which was perfect and then he basically told me to f**k off and never come back. The second ENT did a hearing test, which was normal as well, checked inside of my nose with a long camera and a MRI for acoustic neuroma. The third one wanted to do a hearing test of course, but I refused, he checked my Eustachian tubes and said there are signs of dysfunction. I got a steroid that didn't help and then I did pneumatic inhalation sessions (AMSA). It didn't improve my tinnitus at all.

I think maybe I am looking in wrong places. I don't think the second ENT looked for anything in my MRI other than an acoustic neuroma. I found this article (link below) about Carbamazepine and neurovascular compression of the cochlear nerve.

I am also considering TMJ (I have a night guard), I have pain in my temple and jaw frequently and sometimes after eating something chewy my ear explodes with a very loud sound that goes away after several seconds. Also when I move my ear muscles (I think they are called posterior auricular muscles, maybe?) the morse code beeping turns into a continuous loud beep. So, my theory right now is that something is compressing my nerve or something like that. I want to talk about this with my second ENT since I will have a follow up with him this month.

I am tired and unhappy, but stubborn to get this solved or at least try. I know I might never find out what caused it, but I am 31 and if there is any chance that I can improve my quality of life I will take it.

If anyone has similar experiences or advice on what to try or how to talk to doctors that are trying to push the hearing loss (which I don't have) diagnosis on me please let me know.

I am based in Ontario, Canada and every doctor except the third ENT was in Canada. The third ENT was in Poland. I am open to doctors from all over the world and I can travel if needed. One doctor that I have read a lot about here is doctor Dirk De Ridder, so I am thinking of consulting with him.

Typewriter tinnitus revisited: The typical symptoms and the initial response to carbamazepine are the most reliable diagnostic clues

You could try this flowchart.

What kind of hearing test did your ENT doctors perform? Was it fork tests? Pure Tone Audiometry in a booth?

 

[Mumbo]

I'm so sorry you have to deal with the Morse code. Mine started only a week ago and it can be maddening so I can only guess what you've had to go through for so long. My wife jokes that my ears are communicating to me that I should do more household chores.

I'm also someone who can move the ears willfully (a lot of people can't) and just noticed after you mentioned it that it makes my Morse code turn into a continuous sound too! Super weird. When I flex my neck muscles it increases my regular tinnitus, but my ents always dismiss this as anything indicative of a neck problem. Then again, I've never had a good ENT.

Anyway, I wish you luck and if either of us figures something out before the other we should compare notes.

 

[Michael Leigh]

Hi @martap.

Many things can cause tinnitus including stress. It can also appear for no apparent reason and gradually go away all by itself which can add more mystery to this strange anomaly.

The fact that you have been examined by three ENT doctors, had hearing tests and an MRI scan, should have revealed if there is an underlying medical problem within your auditory system causing the Morse code tinnitus. Your ENT mentioned you have signs of Eustachian tube dysfunction which could be a factor. If this is responsible for your symptoms then a decongestant as well as oral medications and antihistamines can help treat the condition and therefore, it's best to be under the care of an ENT doctor because this is their area of expertise.

Ruling out TMJ as a possible cause for the tinnitus and the above medical conditions mentioned, the likely cause is some exposure to loud noise or the regular use of headphones, earbuds or headsets even when used at low volumes. Morse code tinnitus is a common occurrence in noise induced tinnitus.

Only you can know if your symptoms are linked to noise induced tinnitus. If you regularly listen to audio through any type of headphones including earbuds, headsets, bone conduction and noise cancelling headphones, then you have probably been listening at too loud a volume without realising it. It is here your problems are. Going to see more ENT doctors will not help your situation because this is not their area of expertise.

You need to be referred to an audiologist that specialises in tinnitus and hyperacusis management. Various treatments can help, since you've had this nearly a year.

Please click on the links below and read my posts. Then go to my started threads and read: The Habituation Process, How to Habituate to Tinnitus, Tinnitus and the Negative Mindset, Acquiring a Positive Mindset, Will My Tinnitus Get Worse?

If your tinnitus is noise induced, my advice is not to use any type of headphones even at low volume as you risk your symptoms getting worse.

I wish you well,
Michael

New to Tinnitus, What to Do? | Tinnitus Talk Support Forum
Tinnitus, A Personal View | Tinnitus Talk Support Forum

 

[martap]

Thank you everyone for replies!

@GregCA, it was Pure Tone Audiometry.

@Mumbo, sorry to hear you have it too. If you find out a cause or anything that helps you with it, please let me know.

@Michael Leigh, thank you for sharing these resources, I will check them out. I don't think my tinnitus is noise induced. I work in a quiet environment and I only used headphones occasionally at a very low volume. Currently, I don't use headphones or anything like that to listen to music. I only wear noise cancelling AirPods (without music) when I am in the louder environment like on the plane.

Is it possible that it is noise induced at my age and lack of history of loud noises or using headphones? And if it was noise induced would I be able to alter the sound by moving my muscles?

I also tried different decongestants and antihistamines, but that didn't really make any difference.

 

[Michael Leigh]

I work in a quiet environment and I only used headphones occasionally at a very low volume.

Quiet environments are not good for anyone that has tinnitus, as it allows the brain to focus on internal sounds within the body and head. The head is where the tinnitus resides. While the brain increases its background activity it will also increase the tinnitus which can make it louder. Buy a sound machine to provide low level sound enrichment whilst at work. It is important not to sleep in a quiet room too and advise you start using a sound machine at night, by placing a sound machine by the bedside. More about this is explained in my posts: New to tinnitus what to do? Tinnitus, A Personal View. Please do not dismiss the advice about sound enrichment and quiet surroundings as it's very important.

Is it possible that it is noise induced at my age and lack of history of loud noises or using headphones? And if it was noise induced would I be able to alter the sound by moving my muscles?

Noise induced tinnitus can affect anyone at any age and is one of the most common causes of tinnitus. I am not a betting person but if I were, I'd wager your Morse code tinnitus is linked to exposure to loud sounds. Many people that listen to audio through headphones, earbuds or headsets, think they listen at low volume but more often than not this isn't the case. It is not just the volume of the audio that is of concern but how frequent the person uses these devices and duration of use which only you know.

If you are able to print my articles I suggest that you do, as you will absorb and retrain the information better than reading on a screen. Refer to them often as they are a form of counselling and will help to reinforce positive thinking.

Remember to start using low level sound enrichment while at work and particularly at night. This doesn't mean to mask or attempt to cover up the tinnitus so it can't be heard.

Michael

 

[blamingeverything]

How are you doing @martap? I think I have the same thing. I don't know if "typerwriter" really fits the bill, it's a very faint rapid firing beep (in addition to my high pitch tinnitus), sounds just like a morse code sound effect from a movie.

It goes away when I drink alcohol and stays away if I have a drink or two every night. But as soon as I stop drinking (no drinks for 2 nights at the moment), it comes right back. Clonazepam has a similar effect (I don't mix the two).

Just as I was getting used to tinnitus, this happens. Par for the course I guess.

 

[Pol]

Hi @martap,

I was wondering if your typewriter tinnitus became better? I went to Dirk de Ridder and he wants to operate the muscle. But I am still frightened of it.

Maybe you found another solution in the meantime?

 

[martap]

@blamingeverything, I am doing fine, but no changes to my tinnitus so far. I think maybe "morse code" describes better the sound that I am hearing. Someone posted this video a while ago:



It is very similar to the tinnitus in my left ear. The one in my right ear is similar too, but the tone is a bit lower. Also, the morse code sometimes switches into a continuous beep and sometimes but rarely I just hear the sound like the water from the video. I don't drink much, so I will need to check if the alcohol helps, also I didn't try any medications other than supplements.

@Pol, I didn't see Dr. Dirk de Ridder yet, I am seeing my ENT tomorrow. I want to show him the article about the Carbamazepine, but my hopes are very low. ENTs here do routine stuff like audiometry tests and don't want to look beyond that. I will see how it goes tomorrow, but I want to schedule a call with Dr. Dirk de Ridder anyway or maybe visit him while I am in EU.

I found this post where someone had their muscle cut, maybe this will be of interest to you:

Typewriter Tinnitus

 

[martap]

Small update. I've seen my ENT today and he prescribed me Carbamazepine for 4 weeks. I will give an update if that helps.

 

[blamingeverything]

Awesome, thanks for getting back. Let me know about the alcohol. It's a pretty clear effect for me.

The YouTube video above isn't terribly different from mine, but my tone is much more faint. Just loud enough to cause pangs of anxiety in quiet rooms. It's funny how I don't care about my "normal" loud tinnitus at all when that's going on - shows you what's possible.

Also, I'm soon going for a follow up with my otologist, who is said to be one of the best in the country, and plan to raise my new morse code. I don't expect there will be any definitive answer but maybe he will have seen this before.

 

[Mumbo]

That video is similar to mine, but mine's a bit lower in tone. In the past 2 months I've picked up in my left ear: a morse code ringing, a high pitch electrical zing with pain, a dentist drill, a mid-tone eeeeee, a high-tone eeeee, a clicking sound, and 2 different hisses. If during this time only the morse code appeared, it'd probably be enough to drive me batty on its own. But because so many others things came at a similar time I only really notice the morse code when I have an earplug in and the zing isn't being set off. So weirdly I don't find it too annoying except in certain circumstances.

I was thinking of asking for Carbamazepine too, and heard it can start working very quickly. I'll be hoping it helps you. Good luck to ya!

 

[Mumbo]

Okay, weird. In the middle of the night yesterday, my morse code sound turned into a lower-pitched tone with the same rhythm it always had for about an hour before reverting back to the higher-pitched tone. For that hour it was a little less annoying and I was hopeful maybe it was resolving. When it returned to the higher-pitched tone it's louder than ever.

Anyone else have anything like this happen? What does it mean? Was it a strange reaction to Ambien? Very confusing.

 

[aura]

Okay, weird. In the middle of the night yesterday, my morse code sound turned into a lower-pitched tone with the same rhythm it always had for about an hour before reverting back to the higher-pitched tone. For that hour it was a little less annoying and I was hopeful maybe it was resolving. When it returned to the higher-pitched tone it's louder than ever.

Anyone else have anything like this happen? What does it mean? Was it a strange reaction to Ambien? Very confusing.

Have you tried Carbamazepine after all? How are you now?

 

[blamingeverything]

Have you tried Carbamazepine after all? How are you now?

For what it's worth, my morse code sound has faded significantly to the point where I don't really hear it at all. It's still just barely there and I can hear it sometimes at night with that ear on a pillow but that's it.

I fully expect it will ramp up again at some point, who knows what causes it, but I will trust that it'll fall back again too.

 

[aura]

For what it's worth, my morse code sound has faded significantly to the point where I don't really hear it at all.

After how long?

 

[blamingeverything]

After how long?

Good question. I think it was just a couple weeks. It's still there mind you, but super faint.

 

[Marshall]

Good question. I think it was just a couple weeks. It's still there mind you, but super faint.

Is it low frequency?

 

[blamingeverything]

Is it low frequency?

Depends what you'd classify as low. It really does (did) sound exactly like the morse code tone you'd hear in a movie.

 

[martap]

I forgot to give an update. I tried Carbamazepine, but it didn't help and I got an allergy reaction to it once the dose was increased, so I had to stop taking it after around 2 weeks.

 

[TheCapybara]

I forgot to give an update. I tried Carbamazepine, but it didn't help and I got an allergy reaction to it once the dose was increased, so I had to stop taking it after around 2 weeks.

Sorry to hear that didn't help, @martap.

Has there been any change or improvement in the sounds since it's been over a year by now?

 

[Chezten]

Hi @martap!

Your tinnitus sounds similar to mine. I often hear Morse code-like sounds, especially when I wake up, and sometimes they last all day. Occasionally, if I'm lucky, it morphs into a continuous loud hum, which is easier to deal with.

An MRI revealed that I have the typical arterial loop close to the vestibulocochlear nerve. I had tinnitus in just one ear for eight years, but about eight weeks ago, I started hearing rattlesnake noises around 4 PM. One morning, the noise was so intense, like a machine gun, that I had to go to the hospital by ambulance. Unfortunately, doctors often look at you as if you're crazy.

Currently, I take a Valium when I wake up and two Endep tablets in the evening. I'm waiting to see an ENT specialist, but there's a six-month wait, with my appointment scheduled for March 25.

To help with sleep, I use wired headphones and listen to "Babbling Brook" or "Waves" on Spotify, looping it all night. I also enable "Do Not Disturb" on my phone. I'm not keen on surgery or anti-epilepsy drugs.

I believe my body and nervous system have gone into alarm mode. Just writing this can cause the Morse code-like sounds to pick up pace. I'm trying somatic massage and more osteopathy, as I think the tension in my neck and shoulders might be contributing.

Just as some people experience twitching nerves in other parts of their body due to underlying stress, I think tinnitus is how my body manifests stress. I've heard that a certain type of magnesium, specifically magnesium glycinate, can help. Wine also helps me a bit, though I say that with a bit of humor.

I wish I could have my old tinnitus back. This new development started after I had some osteopathic treatment inside my mouth, which I suspect might have triggered it.

Any updates from you would be appreciated.

 

[Chezten]

I forgot to give an update. I tried Carbamazepine, but it didn't help and I got an allergy reaction to it once the dose was increased, so I had to stop taking it after around 2 weeks.

Sorry to hear it didn't work out. My tinnitus changed to a Morse code pattern about six months ago. I've been taking Endep at night, and usually, as soon as I wake up, the "machine gun" noise starts, even after a peaceful night's sleep. If I'm lucky, it eventually shifts to a humming sound in my bad ear, which I can cope with. But today, the clicking has been going on for seven hours on both sides.

I've seen an ENT specialist, an audiologist, and a neurosurgeon, who now tells me I need to see a neurologist. I'm hoping to try Carbamazepine soon.

It seems like head movements and talking can make things worse. I'm currently undergoing osteopathy and dry needling in the trigeminal nerve area, but so far, no luck.

 

[martap]

Sorry to hear that didn't help, @martap.

Has there been any change or improvement in the sounds since it's been over a year by now?

Unfortunately, there's been no improvement for me . However, I've kind of made peace with my situation, so it's easier now, and I visit the forum less frequently.

Sorry to hear it didn't work out. My tinnitus changed to a Morse code pattern about six months ago. I've been taking Endep at night, and usually, as soon as I wake up, the "machine gun" noise starts, even after a peaceful night's sleep. If I'm lucky, it eventually shifts to a humming sound in my bad ear, which I can cope with. But today, the clicking has been going on for seven hours on both sides.

I've seen an ENT specialist, an audiologist, and a neurosurgeon, who now tells me I need to see a neurologist. I'm hoping to try Carbamazepine soon.

It seems like head movements and talking can make things worse. I'm currently undergoing osteopathy and dry needling in the trigeminal nerve area, but so far, no luck.

My MRI didn't reveal anything, although I think they were only checking for tumors . I feel like my ENT has given up; he just sees me once a year to check on me, but he doesn't have any new advice or tests, aside from checking for hearing loss, which I don't have.

In addition to the morse code sound, I also experience other sounds, like a kind of white noise that's hard to describe . I suspect these might be related to my bad posture and neck/jaw tension. Sometimes, when I clench my jaw, the sounds get louder. Once, after a deep massage on my neck, chest, and upper back, I thought the sound went away for a few seconds, but I haven't experienced that again after a massage.

Recently, I've started feeling something like a muscle spasm in my left ear, which is new for me.

 

[Chezten]

Unfortunately, there's been no improvement for me . However, I've kind of made peace with my situation, so it's easier now, and I visit the forum less frequently.

My MRI didn't reveal anything, although I think they were only checking for tumors . I feel like my ENT has given up; he just sees me once a year to check on me, but he doesn't have any new advice or tests, aside from checking for hearing loss, which I don't have.

In addition to the morse code sound, I also experience other sounds, like a kind of white noise that's hard to describe . I suspect these might be related to my bad posture and neck/jaw tension. Sometimes, when I clench my jaw, the sounds get louder. Once, after a deep massage on my neck, chest, and upper back, I thought the sound went away for a few seconds, but I haven't experienced that again after a massage.

Recently, I've started feeling something like a muscle spasm in my left ear, which is ne

Hi Martap,

Good to hear you're coping better. I have good and bad days. Fortunately, I'm not in pain like those who have trigeminal neuralgia.

I started on Tegretol (carbamazepine) on November 28. I'm currently taking 100 mg twice a day for the first week, then increasing to 200 mg twice a day. The instructions are to keep increasing until the symptoms stop. However, I'm not convinced that a nerve in conflict or a looped nerve around the vestibulocochlear nerve is the culprit—it's just a gut feeling.

I felt some pressure from my family to at least try carbamazepine. So far, there's been no change, but I'll continue for 2 or 3 weeks. Fingers crossed, as the neurologist says that once the symptoms stop, I can gradually reduce the dose.

Can I ask what your allergic symptoms were? I've only been on a low dose for a few days, and so far, the only side effect I've noticed is feeling quite hungry.

I'm also waiting for cyclobenzaprine (a muscle relaxant) to arrive from Canada. I've read about others finding success with short-term use for 3 to 4 weeks. I feel the spasms are a hyperexcited reaction that spiraled out of control after I started seeking help and undergoing various physical treatments.

Sometimes, it feels like blood is trying to rush to my head through narrow veins, causing the splattering sound. Strangely, the spasms move from my ears to my upper and lower jaw, like an electrical current trying to find a way out. I have four amalgam fillings left in my mouth, but I'll leave replacing them as a last resort and plan to see a holistic dentist if needed.

I'm also investigating DMSO, as recommended by a scientist who writes on Substack. His handle is "The Forgotten Side of Medicine." He explores and shares insights on supposedly hidden or suppressed remedies for various ailments.

All the best,
ChezTen

P.S. I also experience white noise.