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

Discussion in 'Introduce Yourself' started by martap, Mar 7, 2022.

    1. martap

      martap Member

      Tinnitus Since:
      April 2021
      Cause of Tinnitus:
      Unknown
      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
       
    2. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      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?
       
    3. Mumbo

      Mumbo Member

      Tinnitus Since:
      01/2001
      Cause of Tinnitus:
      Unknown
      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.
       
    4. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      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
       
    5. AUTHOR
      AUTHOR
      martap

      martap Member

      Tinnitus Since:
      April 2021
      Cause of Tinnitus:
      Unknown
      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.
       
    6. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      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.
      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
       
      • Genius Genius x 1
    7. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      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.
       
      • Like Like x 1
    8. Pol

      Pol Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown
      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?
       
    9. AUTHOR
      AUTHOR
      martap

      martap Member

      Tinnitus Since:
      April 2021
      Cause of Tinnitus:
      Unknown
      @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:

      morse code tinnitus example


      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
       
      • Informative Informative x 1
    10. AUTHOR
      AUTHOR
      martap

      martap Member

      Tinnitus Since:
      April 2021
      Cause of Tinnitus:
      Unknown
      Small update. I've seen my ENT today and he prescribed me Carbamazepine for 4 weeks. I will give an update if that helps.
       
      • Like Like x 1
    11. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      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.
       
    12. Mumbo

      Mumbo Member

      Tinnitus Since:
      01/2001
      Cause of Tinnitus:
      Unknown
      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!
       
      • Like Like x 1
    13. Mumbo

      Mumbo Member

      Tinnitus Since:
      01/2001
      Cause of Tinnitus:
      Unknown
      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.
       
    14. aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      Have you tried Carbamazepine after all? How are you now?
       
      • Good Question Good Question x 1
    15. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      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.
       
      • Like Like x 1
    16. aura

      aura Member Benefactor Ambassador Hall of Fame

      Location:
      Romania
      Tinnitus Since:
      05/2012
      Cause of Tinnitus:
      Unknown
      After how long?
       
    17. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      Good question. I think it was just a couple weeks. It's still there mind you, but super faint.
       
      • Like Like x 1
    18. Marshall

      Marshall Member

      Location:
      ND
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Not sure/virus/noise trauma/cumulative noise damage
      Is it low frequency?
       
    19. blamingeverything

      blamingeverything Member Benefactor

      Location:
      USA
      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      high frequency hearing loss
      Depends what you'd classify as low. It really does (did) sound exactly like the morse code tone you'd hear in a movie.
       
Loading...

Share This Page