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

Hello everyone.

Here's my story:

I believe I have had pulsatile tinnitus (heartbeat synchronous) in my left ear for quite some time, but it's never been loud or intrusive enough to have really seriously bothered me for any length of time. Things started to change about a month ago.

I've also been struggling with incapacitatingly severe abdominal nerve pain for several years now. Most typical pain killing medications are not effective on nerve pain; Oxycodone helps me a bit and I've never had any side effects from it, so that's what I use and I try to take minimal amounts but it only helps so much.

A doctor recently recommended trying Nortriptyline since it was supposed to be effective for nerve pain. I took 20 mg per day for 4 days (one month ago). The pain seemed to decrease about 20 to 30% but the side effects were horrible - painful urination and a complete inability to sleep at all - I didn't sleep a wink for 5 days in a row, so I gave up on it.

There was at least one other side effect that I didn't notice at first - I started hearing a sequence of repeating tones in my left ear - a set of anywhere from 2 to 6 tones that would occasionally change to a different set for whatever reason. At first I thought someone was playing music in another room, but then I realized it was being triggered by the noisy fan of a heater I had in my room. Sometimes the tones sound like a violin and other times like a French police car siren, as well as other tones too. At no time is it a familiar melody that I recognize from before.

Fast forward a few weeks. Now, when watching TV for 10 minutes or more, the tinnitus in my left ear increases dramatically and it suddenly starts to also appear at a loud level in my right ear. After one evening of watching a few TV shows, the increased loudness made it impossible to get to sleep for more than half the night even after taking Benadryl.

In the meantime, the repeating tones in my left ear continue. Over the weeks, they have been repeating and I recognize them from the prior week. They seem to be independent of the tinnitus. Sometimes, I can get them to go away for a few minutes or change to another sequence by listening to a short stream of music. I've noted that listening to white noise has no effect on it. Thus, it seems to have something to do with whether my mind is active in certain ways, especially verbally, since it mainly starts up as soon as things are quiet and I'm alone and not when I'm speaking to someone or watching TV or listening to music.

Lately, when I wake up in the mornings, my tinnitus is reasonably quiet and mostly stays quiet until I am exposed to relatively normal levels of sound, such as a TV or someone speaking to me and then it ramps up. It then gets to be a bit painful to continue at what was previously a normal volume for me. On the other hand, the repeating tones can start at any time and don't appear to be triggered by anything that I have noticed so far.

A data point - when my tinnitus got loud, I tried that trick of pressing down hard with my palms on the area behind my ears and my hissing tinnitus noise drops quite a bit but returns immediately when I stop pressing down (no effect on the repeating tones). Not sure of the relevance of that?

Also, it's always been the case that if I tilt my head backwards with my left ear towards my left shoulder, the loudness of my tinnitus increases in my left ear. It also increases to a lesser extent if I move my lower jaw forward.

Due to my nerve pain being quite incapacitating and with COVID-19 still running rampant, I won't be able to get in to see an audiologist for quite a while.

I'm now getting concerned that this might be permanent, since it's been 4 weeks since I stopped the Nortriptyline and I'm not seeing any improvement and my tinnitus is worse than immediately after taking the drug.
Right now I try to keep my surroundings as quiet as possible to prolong my time with minimal tinnitus, as I imagine most forum members can appreciate. Otherwise, I am faced with several hours of tinnitus and repeating tones after only a short exposure to normal sound levels. However, this will not be sustainable in the long term as I will need to communicate with others. Is this sound isolation a good idea for now, in case I am in a healing mode?

Based on my newfound sensitivity to a normal volume level of sound, do I now have reactive tinnitus or hyperacusis? Can it really happen that quickly with just a few days on a medication?

What about the repeating tones that start as soon as it is quiet (lately they have been starting just 10 seconds after I stop listening to music)? Are they related to the tinnitus? Is it strange that I only hear them in my left ear? Has anyone else experienced this? Any way to rid myself of those tones in my brain since they're driving me a little crazy?

What has this drug done to me??


Thanks to anyone who might have some insight or be able to help.

 

I agree you do have symptoms of reactive tinnitus with some degree of hyperacusis. It seems that hyperacusis often follows a new tinnitus or a big spike as if the ears are quite unstable and are learning to recalibrate themselves on hearing again. Don't worry too much though as reactive tinnitus tends to fade over time when the ears learn to adapt to the new normal.

Take care. God bless.

 

Yesterday, I tried to keep things as quiet as possible, in order to protect my ears.
No TV, music or talking. That seems to have been a mistake.
Instead, my tinnitus started to spike as I was going to sleep and peaked at 3am in both ears and woke me up, something that has never happened to me before! After about an hour of playing some low volume nature sounds, I was able to get back to sleep.
This morning, everything seems muffled, as if the high frequencies are cut.
What is going on?

 

This is what a new tinnitus can do to us, having different symptoms and can morph into different tones or physical qualities that we tend to freak out by its unpredictable nature.

What is really happening is perhaps that the ears are still quite unstable thus the neurons are highly agitated and can give out changing signals or symptoms. The muffled sensations can be due to aural fullness or plugged ears, which are quite common for ears who had suffered a new tinnitus especially if it comes from acoustic trauma.

It may take months to a year or two for some people to find some consistence of their tinnitus, 6 months to 18 months are often quoted. So try your best to stay calm and positive that all these will past and that better days are to come.

 

Update:

I had hoped that things would be getting better by now, but instead they are getting worse.

The Musical Ear Syndrome has come back with a vengeance and is around almost 24 hours of the day.

My pulsatile tinnitus is now also occurring in my right ear and is very loud at times, especially in the evening. As a result, I am using Melatonin to get to sleep, but that only lasts for about 2 hours and then the tinnitus wakes me up and I toss and turn for the rest of the night.

I don’t understand why things are worse now, almost 2 months after taking the Nortriptyline. I also don’t understand why pulsatile tinnitus has spread to my other ear - what could have possibly changed to cause that?

I’m now realizing how much worse tinnitus can get, even when you think you had it bad...

 

It's been many days since I've had any kind of significant night's sleep. I've tried Melatonin, generic Benadryl, generic Gravol. None of those work for more than a couple of hours.

Either my tinnitus or my Musical Ear Syndrome will wake me up from that. My physician had written me a prescription for Trazodone, but I'm very leery to try that based on the fact that I believe I am in this situation because of Nortriptyline.

Does anyone have any recommendations for something else I can try that won't make things worse?

 

@JayZee, I think I am experiencing the same. Did your tones fade away over time?

Best,
Jane

 

Well, it’s been about nine months since it originally happened to me. Currently, I would say it is still bothering me quite a bit, but at a lower volume than it did originally. Perhaps in another a year or two, it might go away to a greater degree, time will tell.

In the meantime, to help me sleep, I have had good success using a new sleeping pill called Dayvigo which is referenced in other posts in these forums. Without it, my days would be much more horrible.

 

Please keep us updated on your progress. Would loe to hear if it will fade away.

Sleeping for me is ok-is but once I wake up the whole orchestra starts one after the other.

 

Any updates? Just wondering how you're doing.

 

@PolarSun,

Well all my symptoms are still about the same and it seems the sounds are also evolving into real tunes that I can hear. Although some tunes seems to be more as a background sound and some seem to to come from my ear and the different sounds also alternate. So I hear kind of melodic drumming sounds, some kind of organ flutes and also gongs. Sometimes the sounds are more bearable than other times. I really hope the sounds will fade with time.

@JayZee,
I am also wondering how you are doing? Are the sounds fading a bit more?

 

Ever try any steroids or sodium channel blockers for this?

 

No, I have not done that. A bit afraid that it will make things worse. Are your sounds getting a bit better?

 

Hi Jane - Are you still having musical tinnitus? Any improvement or tips for coping?

 

Hi @PebblesForNow,

I still have it and it has not really improved. Still figuring out how it can improve. How did you get yours?

Best,
Jane

 

Hi Jane,

Sorry to hear it has not really improved for you. I have had regular (severe, but the normal "EEEEEEE" type) tinnitus since 2011, but this musical tinnitus/musical hallucinations started after a long 2-day road trip returning from vacation. I wore double hearing protection because the drive down had caused a spike in my regular tinnitus. I think that was my mistake. My theory is that the lack of external sound from the double protection coupled with the constant low rumble of the road that I could still hear did something to trip this off in my brain and caused the musical tinnitus.

Is your music constant or intermittent? The music for me is constant, 24/7, although it is made significantly worse by background noise such as the AC or driving in the car. It immediately goes down in volume substantial if you flip off the AC, turn off the car, etc. So I think there is definitely a component of audio pareidolia for me.

Have you tried any anti-epileptics or SSRIs? I am reluctant to, but I also don't think I can do the 24/7 music long term.

Amy

 

Hi Amy,

I have exactly the same as what you experience. Sometimes it’s louder and sometimes softer. For me, it gradually got worse starting after an acute stress reaction where my senses got super heightened.

I have not considered the medication you are talking about but I am interested in how you respond to it if you consider taking it.

Let’s keep in touch,
Jane

 

Jane - Sorry you are still dealing with this, but it is less isolating to hear from someone with the same experience (it is quite odd to try to explain to anyone, obviously). I think the trip I mentioned above also had my senses on high alert, like you mention. Take care!

 

@JayZee, how are you doing?