Musical Ear Syndrome (Musical Tinnitus) Following a Car Trip (Wore Earplugs and Earmuffs)

[PebblesForNow]

Hi all,

I have had tinnitus since 2011, following a concert. It was originally what I would legitimately call "catastrophic", but I also had inflammation due to an autoimmune disease contributing. So lots of years of high dose prednisone, and time, brought it down significantly. Thereafter, I would have flare ups, presumably caused by inflammation and occasionally by relatively mundane noise exposures, that would last months and cause the volume and intrusiveness to increase to unbearable levels. These would only resolve with high dose steroids for increasingly longer periods of time.

So, in sum, I have had the "eeeeeeeeeee" high pitch tinnitus since 2011, with it ranging in volume and intensity from a 10 (totally unmaskable in any environment, etc) to a 2 or 3 when things were good and inflammation was under control.

I recently went on a long drive (can't fly due to ETD) for vacation. We were in a very quiet vehicle and took frequent stops, breaking the trip down into 3 days of about 5.5 hours each day. I also wore ermuffs. When we arrived at our destination, I had a terrible spike for the first half of the week we were there. So for the drive home, I wore double protection of earplugs and earmuffs. We arrived home with my regular tinnitus slightly heightened, but not nearly as bad as after the trip down.

Unfortunately, over the following day or two I started hearing a multi-tone sound repeating over and over that sounds musical. It has gotten increasingly loud and intrusive. From what I have read, this sounds like "musical ear syndrome" or "musical tinnitus". It is only the same few notes over and over again all day: "de de, de de, de de, de deeeeeee; de de, de de, de de, de deeeeeeee" etc.

I can still hear my regular tinnitus as well, it is largely back to its baseline.

Anyone have experience with anything similar? Any success stories?

So far it has been about a week and it seems to be getting worse rather than better. I don't think I did any noise damage, but by over protecting on the drive home I may have given my brain too much quiet to play with and caused further issues. Even after all of these years with tinnitus, I hate how you are always darned no matter what you do.

 

[Joe Cuber]

Hi there @PebblesForNow - Welcome to the forum. That must have been a tough trip to go on, I also have a tough time going on long drives. My tinnitus will usually spike and stay high for a long while from all the road noise. I've tried earplugs, but they don't work so well for me because I'll hear my tinnitus pretty loudly the whole time the earplugs are in, which I find to be more annoying. I haven't found a good solution yet. I was thinking maybe playing nature sounds on the stereo? I don't know whether that'd make things worse. It's trial and error.

Musical tinnitus, from what I understand, is uncommon. Sorry to hear you're experiencing it, I hope you'll be able to get on top of it. Has it improved any or are you able to cope better?

I've searched the threads here, and I haven't found many results. But I did find this one from @JayZee interesting:

Tinnitus and Hearing a Sequence of Repeating Tones — Caused by Nortriptyline?

Stay strong, stay positive!

 

[PebblesForNow]

Thanks for responding, Joe. Unfortunately the musical tinnitus continues and has become more intense. I have a systemic automimmune disease that can cause neurological issues, so I am working through some additional testing on that front. But for now, it is 24/7 music. I am able to stay pretty calm, given my past experiences dealing with my high pitch "regular" tinnitus, but it is a little scary/disconcerting.

You are right that everything with tinnitus seems to be trial and error. I am just a little shocked at how many "errors" I still seem to make, even after all of these years!

Hope you are doing well with your tinnitus (and otherwise)!

 

[Joe Cuber]

Sure thing @PebblesForNow, I hope your testing goes well. What's completely wild about tinnitus is how varied it is. Reading through posts on this forum, I'm astonished about the variety of causes, symptoms, aggravations, solutions. It's dizzying.

It's good to hear you can stay calm, that's a positive. I'm new-ish to tinnitus, about 10 weeks in now. I have mild reactivity in both ears, and an additional fluctuating tinnitus in my right, which is the annoying one. It fluctuates by the day, so some days it's quiet and some days it hisses loudly. Fun times. I used to get freaked out (and I went through a major anxiety/depression episode--on meds now), but recently, I recognize it but don't get so worried about it.

 

[PebblesForNow]

Sure thing @PebblesForNow, I hope your testing goes well. What's completely wild about tinnitus is how varied it is. Reading through posts on this forum, I'm astonished about the variety of causes, symptoms, aggravations, solutions. It's dizzying.

It's good to hear you can stay calm, that's a positive. I'm new-ish to tinnitus, about 10 weeks in now. I have mild reactivity in both ears, and an additional fluctuating tinnitus in my right, which is the annoying one. It fluctuates by the day, so some days it's quiet and some days it hisses loudly. Fun times. I used to get freaked out (and I went through a major anxiety/depression episode--on meds now), but recently, I recognize it but don't get so worried about it.

It sounds like you are making great progress. I was a total wreck for the first 6 months to a year after I initially developed tinnitus back in 2011. It was very severe, unmaskable, and terribly reactive to everything. And of course, then there is all of the questioning of every decision, etc. and whether it was causing a spike. It was a rough time. But I can speak from experience that it definitely improved a ton, in sometimes imperceptible increments, over that time.

So hang in there - you are still very early on and things will likely continue to improve and become less reactive over the coming weeks and months.

 

[Joe Cuber]

It sounds like you are making great progress. I was a total wreck for the first 6 months to a year after I initially developed tinnitus back in 2011. It was very severe, unmaskable, and terribly reactive to everything. And of course, then there is all of the questioning of every decision, etc. and whether it was causing a spike. It was a rough time. But I can speak from experience that it definitely improved a ton, in sometimes imperceptible increments, over that time.

So hang in there - you are still very early on and things will likely continue to improve and become less reactive over the coming weeks and months.

Hey thanks for the encouragement, I appreciate it. I'm slowly getting better, it's still an uphill battle, but I'm trying my best, and I'm trying to stay positive

 

[jecamp1]

It is only the same few notes over and over again all day: "de de, de de, de de, de deeeeeee; de de, de de, de de, de deeeeeeee" etc.

I could be wrong, but I read and watched some videos that described musical tinnitus as a condition when you literally hear music like songs, individual musical instruments playing a stead bead or rhythm, or just plain singing. It's more like hallucinations than tinnitus. Lots of commenters on the videos were saying how it's like someone is playing the radio in the room. Or that there was a brass band playing in the backyard. That's wild.

I'm saying this because your description of the noises you are hearing sounds just like my tinnitus, but I could be wrong because no one can hear what we're each hearing, respectfully. My tinnitus used to be a straight up high pitch steady EEEEEEE, but it's changed and the De's have been consistently taken over for the last 4 or so days. I'd still call mine ringing and it fluctuates in volume. The single De's are quieter and then the longer Deeeeeee's. It is unilateral tho. Only on my left. Also comes with some annoying dull pain.

Got no advice. Just my empathy and love. We are going to get better. I know it. Plus you are a veteran. Remember how strong you are @PebblesForNow.

And hey @Joe Cuber, I hope you're doing better with each passing day my dude!

 

[Joe Cuber]

Got no advice. Just my empathy and love. We are going to get better. I know it. Plus you are a veteran. Remember how strong you are @PebblesForNow.

I too am sending you positive vibes @PebblesForNow!

And hey @Joe Cuber, I hope you're doing better with each passing day my dude!

Hey thanks @jecamp1, I'm slowly getting into that acceptance phase of habituation. Last two days were good in that regard. I could hear it, but I was less bothered by it (until the evening, when I was tired). Today is another bad day, and I can already feel the dread. So I have to somehow turn my frown upside down.

 

[PebblesForNow]

I too am sending you positive vibes @PebblesForNow!

Hey thanks @jecamp1, I'm slowly getting into that acceptance phase of habituation. Last two days were good in that regard. I could hear it, but I was less bothered by it (until the evening, when I was tired). Today is another bad day, and I can already feel the dread. So I have to somehow turn my frown upside down.

So I know this sounds cheesy, and it is so not something I would normally do. But during some of the worst of my situation before, I was told to Google "enjoyable activities" and force myself to do two things from the list every day. Even when they weren't "enjoyable" to me. I totally laughed it off. But when things were at their worst, I just started forcing myself to do it anyway. It wasn't immediate, but I was eventually able to to enjoy increasingly more of the activities even during bad days.

If you are going to be miserable anyway, you might as well be miserable doing an "otherwise-enjoyable" activity!

 

[Steph1710]

It is only the same few notes over and over again all day: "de de, de de, de de, de deeeeeee; de de, de de, de de, de deeeeeeee" etc.

Yeah, mine is exactly the same. A little tune that plays over, and over, and over. Once I started humming the tune and thought what's that song? Then it dawned on me that I was humming my tinnitus tune!

But, I second what another member said - I don't think we have musical tinnitus because I believe musical tinnitus is when someone actually hears what they think is a song playing on a a radio, or someone playing music somewhere. My grandmother had musical tinnitus, and she was always asking who was playing music.

Anyway, hope you're doing okay.

Steph

 

[Steph1710]

If you are going to be miserable anyway, you might as well be miserable doing an "otherwise-enjoyable" activity!

Absolutely!

 

[Joe Cuber]

So I know this sounds cheesy, and it is so not something I would normally do. But during some of the worst of my situation before, I was told to Google "enjoyable activities" and force myself to do two things from the list every day. Even when they weren't "enjoyable" to me. I totally laughed it off. But when things were at their worst, I just started forcing myself to do it anyway. It wasn't immediate, but I was eventually able to to enjoy increasingly more of the activities even during bad days.

If you are going to be miserable anyway, you might as well be miserable doing an "otherwise-enjoyable" activity!

Ha that doesn't sound cheesy at all, that sounds like a great coping skill. I believe it's called behavioral activation if I recall my CBT lessons at all.

 

[PebblesForNow]

Yeah, mine is exactly the same. A little tune that plays over, and over, and over. Once I started humming the tune and thought what's that song? Then it dawned on me that I was humming my tinnitus tune!

But, I second what another member said - I don't think we have musical tinnitus because I believe musical tinnitus is when someone actually hears what they think is a song playing on a a radio, or someone playing music somewhere. My grandmother had musical tinnitus, and she was always asking who was playing music.

Thanks, Steph. Unfortunately, mine has expanded to other musical sounds, although it does "revert" back to this repetitive one in between. I think it is likely related to my medication. I just hope it goes away in time, as I am very reluctant to take any of the medicines that would be used to treat it.

I agree that the other tones you mentioned are likely not musical tinnitus. I have had some like that before, too, and I totally can relate to the accidentally singing your tinnitus thing!