Specialists Are Already Starting to Give Up on My Tinnitus Case — I Feel So Hopeless

[Syb]

Long vent. I just need to scream into the void.

Background: I've had a hearing loss induced, atonal tinnitus for years. Mild, very manageable. I honestly couldn't care less about it. I might even have had it all my life (I'm 30F). It got a bit louder a few years ago but I habituated somewhat fast. Rarely ever got spikes.

Then a completely new tone appeared 5 weeks ago, in both ears, after a few days of using new over-ear headphones every now and then, at very reasonable volume. This new tinnitus is usually loud but not overwhelmingly so. Sometimes it almost goes away in my sleep, not sure why. I obviously discontinued use of the new headphones and switched back to my old earbuds when I needed to mask.

I called my family doctor in a state of panic. She prescribed 15 pills of Clonazepam 0.5mg, once or twice a day, to help me calm down, only if needed. I used 12 pills in 5 weeks. It helps reduce the tinnitus a little so that's nice.

Of course she outright said 'sorry, tinnitus isn't my specialty' and referred me to an audiologist and ENT. She also said that if it persists, we'll figure out a medical treatment... whatever that means. I hope she doesn't mean antidepressants because I've been on 3 different types in the past for major depressive disorder and general anxiety disorder, and either the medication did nothing for me (Citalopram), gave me crazy palpitations (Amitriptyline), or made me profoundly suicidal along with a bunch of absurd side effects (Venlafaxine). I refuse to take antidepressants ever again. (Which is why I turned to individual and group therapy at the time — it helped tremendously and I was fine until this new tinnitus started.)

She started me on Pulmicort mixed to sinus rinse twice a day for 2 weeks in case it was my allergic rhinitis acting up and messing with my ears. It somewhat reduced the allergy symptoms but that's about it. I stopped taking it after the 2 weeks.

I've been having a hard time sleeping so I started taking 5-10mg of Melatonin at night. I also tried muscle relaxants, which to my surprise either reduced the tinnitus... or my perception of it, anyway.

I even tried CBD oil as it has helped me with back pain in the past. I can't say whether it helped or not because I stopped after a few days by fear or somehow making my tinnitus worse.

I saw an audiologist 2-3 weeks ago. She said it was a somatic tinnitus, probably caused by the pressure of the new, big headphones on my jaw. She said it had nothing with the ANC function and that it was safe, and that listening to a little music at 60% volume for 2-3 hours a day for 3-4 days couldn't have caused this anyway. She referred me to a physiotherapist to start working on my jaw.

(I also mentioned to her that I had been having rand bouts of mild vertigo, but she said my ears looked fine so it was probably caused by anxiety...? I've never, ever experienced that before. Mystery.)

In the meantime, my left ear started becoming reactive to pretty much all sounds. It's like a 3rd tinnitus sound...? It's an intermittent / fluttering radio static-like sound, atonal, that seems to get worse with sound exposure. (Sound exposure doesn't increase my '1st' and '2nd' tinnitus tones though, just that 3rd, atonal fluttering sound in my left ear... and no pain experienced. I'm just slightly startled by loud sounds because I hear a sort of... distortion / high pitched mimicking of sounds in my left hear.)

I called the audiologist to let her know, and she said it may or may not be hyperacusis...? She admitted she wasn't sure what was going on and needed to ask her colleagues for advice / opinions. I'm seeing her again tomorrow to run more tests. She said to continue sound exposure in the meantime and to try masking when it's too loud — but... I can't mask it since my left ear is reactive and distorts everything I hear unless it's absurdly loud...

I started physiotherapy last week. She said it was probably more cervical spine related than my TMJ. (I have occipital neuralgia, too, although it never affected my tinnitus.) She gave me exercises to do at home for a week (mostly chin tucks), which I did diligently. Pain and tinnitus increased which each passing day, so did the level of 'reactivity' of my left ear. I thought it was a sign that I was strengthening the right muscles or something...? My neck and upper back are so stiff all the time now.

I saw the physiotherapist again today. Based on the results of my at-home exercises she said she doesn't think it's mechanical (what!?) and that there's no point in continuing physical therapy. That it might actually be my nervous system overreacting (???). But... I wasn't stressed at all when this new tinnitus started...? Things had been relatively good for a while. Of course, the anxiety caused by this new situation doesn't help now...

What I can't wrap my head around is. How can it not be mechanical if it's somatic (my neck position affects it + clenching my teeth increases the volume — it never did that in the past)? And if it comes and goes and changes in volume in my sleep or based on which side I slept on...?

I have yet to see the ENT in two weeks, but I'm not getting my hopes up. I picked one with a good reputation, but still, we all know most ENT appointments end up with 'sorry, you'll have to learn to live with it'. That's what I was told the first time I consulted about my old tinnitus, 5 years ago. (And my partner went through the audio / ENT process last year for his own tinnitus, and he also got the 'it might be neurological, sorry, nothing we can do except mask it when it's too loud'. Great. His is a one-sided, constant 7/10. Mine is a 5/10 in both ears most of the time and I find it unbearable. I feel for him. And for anyone who has it worse than me.)

I don't know how to stay positive when doctors and specialists (and even some loved ones) are so dismissive and give up on tinnitus sufferers so easily. I'm doing my best to cheer myself up and reduce anxiety by meditating a lot, distracting myself, going out for walks... But it's really hard.

No wonder people end up so depressed and suicidal with this condition. And mine isn't even that bad! Still, the psychological distress I've been in for the past weeks has made me so depressed and barely functional at times... I'm not actively suicidal, but the thought has been on my mind a few times. And my psychotherapist has no availabilities in the next coming months, so I've turned to self-help books (CBT, ACT), mindfulness and meditation... And Clonazepam once or twice a week when it's just too much and I need a break.

I'm not sure what else to try next. Neurologist? Acupuncture? Is it even worth to keep looking or should I just accept I'm stuck with this? I'm very limited in terms of money and my insurance is absolute garbage. I've started Magnesium Glycinate yesterday, hoping it helps a little...

I've been trying to think of any potential trigger for this new tinnitus, but nothing comes to mind. No change in lifestyle or medication. The only change was the headphones, so part of me still thinks they might have somehow contributed? Or am I just trying too hard to find a cause?

I'm so lost. Confused. Sad. Hopeless.

I do believe in habituation, but the reactive / distortion / sound sensitivity aspect of my tinnitus is just maddening. I don't know how people can live with that. I've lived with chronic pain for years and I'd rather triple the pain I'm experiencing on a daily basis than to have to put up with this.

 

[DRobi]

Syb:

My tinnitus/hyperacusis came on very suddenly 5 months ago (at the age of 65!) and I have been struggling mightily ever since. My tinnitus is reactive as well. When I am exposed to ambient sound the high pitched hissing, mostly in my left ear, just ramps up to get on top. I occasionally have a day where it is more of a constant quieter hissing, but most of the time it is the awful reactive type.

I've been to my GP (1 week course of Prednisone and anti-viral... did nothing), and referred to an ENT (who said the only medical treatment for tinnitus is anti-anxiety and anti-depressant meds), and a referred audiologist who is supposedly a tinnitus expert (she wanted to sell me $5k hearing aids with white noise generators). I took the meds and got dependent on Xanax, and am now on a slow taper off, which has ramped up my tinnitus to a horrendous level.

I also did 9 sessions with a CBT therapist who specializes in tinnitus distress. He said that the phenomenon of habituation is absolutely real, and that I need to hang on to that. On average it takes most people 6-18 months to get to a point where their tinnitus does not "bother" them anymore, and they can resume a somewhat normal life. So that's probably is good as it gets. He also said that eventually we must all learn to accept our new soundscape and relax to it (don't fear it), and learn to listen "through" the noise of tinnitus. I hate my new soundscape, and trying to accept it and relax to it seems almost impossible to me at this time. So I clearly have a long way to go on the road to habituation.

My wife volunteers at the local VA hospital and the number one disability complaint by military veterans is tinnitus. She says so many of them, young and old, suffer from this. It is utterly appalling that medical science has done next to nothing to help tinnitus/hyperacusis sufferers, most especially our veterans. I have never been suicidal before all this, but there was a period about 6-8 weeks ago where I thought about it everyday because I just could not envision how I could ever be happy again with this condition. Fortunately, my depression has lifted a bit, but at the end of my 5 months nightmare, I am really no better off than when I started, other than I am sleeping a little better. Like you, I don't know where else to go, so I am just waiting it out and trying to live a semi-normal life, until some level of habituation takes place.

I wish I could be more positive but there are no easy answers with this condition.

 

[Leila]

He also said that eventually we must all learn to accept our new soundscape and relax to it (don't fear it), and learn to listen "through" the noise of tinnitus

I know that this is what it has to boil down to eventually, we all do. Still, spoken like somebody who has never had to go through a day with an aggravating noise they have no control over in their head.

I hope your tinnitus and hyperacusis will become a little more bearable, soon!

Yours, too, @Syb!

 

[Jrblovsky]

Long vent. I just need to scream into the void.

Background: I've had a hearing loss induced, atonal tinnitus for years. Mild, very manageable. I honestly couldn't care less about it. I might even have had it all my life (I'm 30F). It got a bit louder a few years ago but I habituated somewhat fast. Rarely ever got spikes.

Then a completely new tone appeared 5 weeks ago, in both ears, after a few days of using new over-ear headphones every now and then, at very reasonable volume. This new tinnitus is usually loud but not overwhelmingly so. Sometimes it almost goes away in my sleep, not sure why. I obviously discontinued use of the new headphones and switched back to my old earbuds when I needed to mask.

I called my family doctor in a state of panic. She prescribed 15 pills of Clonazepam 0.5mg, once or twice a day, to help me calm down, only if needed. I used 12 pills in 5 weeks. It helps reduce the tinnitus a little so that's nice.

Of course she outright said 'sorry, tinnitus isn't my specialty' and referred me to an audiologist and ENT. She also said that if it persists, we'll figure out a medical treatment... whatever that means. I hope she doesn't mean antidepressants because I've been on 3 different types in the past for major depressive disorder and general anxiety disorder, and either the medication did nothing for me (Citalopram), gave me crazy palpitations (Amitriptyline), or made me profoundly suicidal along with a bunch of absurd side effects (Venlafaxine). I refuse to take antidepressants ever again. (Which is why I turned to individual and group therapy at the time — it helped tremendously and I was fine until this new tinnitus started.)

She started me on Pulmicort mixed to sinus rinse twice a day for 2 weeks in case it was my allergic rhinitis acting up and messing with my ears. It somewhat reduced the allergy symptoms but that's about it. I stopped taking it after the 2 weeks.

I've been having a hard time sleeping so I started taking 5-10mg of Melatonin at night. I also tried muscle relaxants, which to my surprise either reduced the tinnitus... or my perception of it, anyway.

I even tried CBD oil as it has helped me with back pain in the past. I can't say whether it helped or not because I stopped after a few days by fear or somehow making my tinnitus worse.

I saw an audiologist 2-3 weeks ago. She said it was a somatic tinnitus, probably caused by the pressure of the new, big headphones on my jaw. She said it had nothing with the ANC function and that it was safe, and that listening to a little music at 60% volume for 2-3 hours a day for 3-4 days couldn't have caused this anyway. She referred me to a physiotherapist to start working on my jaw.

(I also mentioned to her that I had been having rand bouts of mild vertigo, but she said my ears looked fine so it was probably caused by anxiety...? I've never, ever experienced that before. Mystery.)

In the meantime, my left ear started becoming reactive to pretty much all sounds. It's like a 3rd tinnitus sound...? It's an intermittent / fluttering radio static-like sound, atonal, that seems to get worse with sound exposure. (Sound exposure doesn't increase my '1st' and '2nd' tinnitus tones though, just that 3rd, atonal fluttering sound in my left ear... and no pain experienced. I'm just slightly startled by loud sounds because I hear a sort of... distortion / high pitched mimicking of sounds in my left hear.)

I called the audiologist to let her know, and she said it may or may not be hyperacusis...? She admitted she wasn't sure what was going on and needed to ask her colleagues for advice / opinions. I'm seeing her again tomorrow to run more tests. She said to continue sound exposure in the meantime and to try masking when it's too loud — but... I can't mask it since my left ear is reactive and distorts everything I hear unless it's absurdly loud...

I started physiotherapy last week. She said it was probably more cervical spine related than my TMJ. (I have occipital neuralgia, too, although it never affected my tinnitus.) She gave me exercises to do at home for a week (mostly chin tucks), which I did diligently. Pain and tinnitus increased which each passing day, so did the level of 'reactivity' of my left ear. I thought it was a sign that I was strengthening the right muscles or something...? My neck and upper back are so stiff all the time now.

I saw the physiotherapist again today. Based on the results of my at-home exercises she said she doesn't think it's mechanical (what!?) and that there's no point in continuing physical therapy. That it might actually be my nervous system overreacting (???). But... I wasn't stressed at all when this new tinnitus started...? Things had been relatively good for a while. Of course, the anxiety caused by this new situation doesn't help now...

What I can't wrap my head around is. How can it not be mechanical if it's somatic (my neck position affects it + clenching my teeth increases the volume — it never did that in the past)? And if it comes and goes and changes in volume in my sleep or based on which side I slept on...?

I have yet to see the ENT in two weeks, but I'm not getting my hopes up. I picked one with a good reputation, but still, we all know most ENT appointments end up with 'sorry, you'll have to learn to live with it'. That's what I was told the first time I consulted about my old tinnitus, 5 years ago. (And my partner went through the audio / ENT process last year for his own tinnitus, and he also got the 'it might be neurological, sorry, nothing we can do except mask it when it's too loud'. Great. His is a one-sided, constant 7/10. Mine is a 5/10 in both ears most of the time and I find it unbearable. I feel for him. And for anyone who has it worse than me.)

I don't know how to stay positive when doctors and specialists (and even some loved ones) are so dismissive and give up on tinnitus sufferers so easily. I'm doing my best to cheer myself up and reduce anxiety by meditating a lot, distracting myself, going out for walks... But it's really hard.

No wonder people end up so depressed and suicidal with this condition. And mine isn't even that bad! Still, the psychological distress I've been in for the past weeks has made me so depressed and barely functional at times... I'm not actively suicidal, but the thought has been on my mind a few times. And my psychotherapist has no availabilities in the next coming months, so I've turned to self-help books (CBT, ACT), mindfulness and meditation... And Clonazepam once or twice a week when it's just too much and I need a break.

I'm not sure what else to try next. Neurologist? Acupuncture? Is it even worth to keep looking or should I just accept I'm stuck with this? I'm very limited in terms of money and my insurance is absolute garbage. I've started Magnesium Glycinate yesterday, hoping it helps a little...

I've been trying to think of any potential trigger for this new tinnitus, but nothing comes to mind. No change in lifestyle or medication. The only change was the headphones, so part of me still thinks they might have somehow contributed? Or am I just trying too hard to find a cause?

I'm so lost. Confused. Sad. Hopeless.

I do believe in habituation, but the reactive / distortion / sound sensitivity aspect of my tinnitus is just maddening. I don't know how people can live with that. I've lived with chronic pain for years and I'd rather triple the pain I'm experiencing on a daily basis than to have to put up with this.

It's a rabbit hole. You may find something to help but specialists are worthless. Hopefully it naturally gets better. Wish I could say you will recover but I have no idea. I'm in hell everyday and wish I could have silence again.

 

[AliasM]

I am specialist hopping and specialist shopping but mainly just to keep me busy. I am not at acceptance yet. It started with (or at the time of) severe headaches and I am still getting severe headaches so it's my only hope. I have seen a lot of specialist doctors and not one of them has been competent or even knowledgeable about tinnitus, or my headaches. My GP had never even heard of hyperacusis.

My tinnitus is somatic in my left ear but not my right. So weird. If I turn my head side to side or ack, the volume really ramps up. I saw 2 different physios and they said everything looks fine in my neck.

Acupuncture and a naturopath are my next stops. Again, I think it is just keeping me busy... and costing me a fortune.

Sorry I couldn't be more help. I am in the thick of it myself and not coping. I get panic attacks just leaving the house. Never experienced that kind of thing in my life before tinnitus. I was always very social and active.

 

[Gemmer]

Masking does help. There are apps you can download. I have the one called White Noise. I used one AirPod in my left ear with it played violet noise very low. It got me sane until my tinnitus improved to the point of only needing a masking machine on low by my bed at night.