After 21 Months Almost No Ringing; Ears Feel Achy All the Time — What to Expect Next?

[Vassili]

Hello everyone!

I am seeking advice.

I've been dealing with tinnitus and hyperacusis for 21 months now. At the moment I almost have no ringing but my ears often feel a bit stuffed and achy. Mild headache is also constantly present. I want to ask what to expect next? Will I continue to improve? Should I continue to wear earplugs while being outside?

I am so tired of it all. I know I've came a long way and I'm almost there (who knows, maybe?) but at times I feel that I won't going to make it.

 

[twa]

Hello everyone!

I am seeking advice.

I've been dealing with tinnitus and hyperacusis for 21 months now. At the moment I almost have no ringing but my ears often feel a bit stuffed and achy. Mild headache is also constantly present. I want to ask what to expect next? Will I continue to improve? Should I continue to wear earplugs while being outside?

I am so tired of it all. I know I've came a long way and I'm almost there (who knows, maybe?) but at times I feel that I won't going to make it.

@Vassili so glad you are improving! How's the hyperacusis?

 

[Vassili]

How's the hyperacusis?

Usually it's something like 90-95% reduced but some days it fully comes back with vengeance bringing along a very unpleasant pain syndrome. These special days make me depressed, make me panic.

Hyperacusis comes back in flashes, haunts me.

I am very tired of it all, I'm sick of it. There is just no ending to this nightmare.

 

[Taw]

Hi @Vassili, do you have burning pain hyperacusis? How long does it last?

Unfortunately no one can tell you when or if it will be cured, because this abomination is so different and so unpredictable for everyone...
I am at 5 months and almost constant burning pain, but I think that fact that yours is reduced to 90% is a good sign.

I don't think there will be a complete cure (I don't know anyone who cured 100% from pain hyperacusis), the damage is already done to us. We should hope for improvements and try to live as good as we can.

 

[Taw]

I forgot to ask something else: when hyperacusis comes back in flashes, how long does it last? Thanks.

 

[Vassili]

do you have burning pain hyperacusis?

I had it. Now I have flashbacks now and then (couple of days a month).

How long does it last?

In my case something like a year, maybe a bit more. First year was very tough for me.

but I think that fact that yours is reduced to 90% is a good sign.

I also think so. Gives me hope.

 

[Taw]

I also think so. Gives me hope.

I can tell you that I have been searching for quite time a single anecdote of pain hyperacusis caused by acoustic trauma having been healed at least 50%.
Most of the ones healed are loudness hyperacusis, not pain hyperacusis.
And most of the pain hyperacusis healed were caused by medication.

There is only another story with pain hyperacusis healed but that person just opened a topic and then disapppeared.

So your story is a good sign. Can you travel by car/train/plane/subway by any way?

Mine started in March 2021 with mild hyperacusis, then in May I used the subway with hearing protection (still stupid) and then it got worse. So 5 months till now. I constantly have burning pain in my ears, I have some better days but not many. This was also your case in the first year?

 

[Vassili]

Most of the ones healed are loudness hyperacusis, not pain hyperacusis.

I had loudness hyperacusis first 3-4 months.

Can you travel by car/train/plane/subway by any way?

Yes, by any way.

This was also your case in the first year?

I started to have first somewhat better days only after 8-10 months. Basically, first year was very tough.

 

[anotherforumuser]

...[ ]...I can tell you that I have been searching for quite time a single anecdote of pain hyperacusis caused by acoustic trauma having been healed at least 50%.
Most of the ones healed are loudness hyperacusis, not pain hyperacusis.
And most of the pain hyperacusis healed were caused by medication...[ ]...

I've been booking the recoveries with pain hyperacusis, for the sake of hope and for the sake of learning from them;
> @serendipity1996 almost solved at least her real bad case of pain hyperacusis, recently confirmed
> @Tom Cnyc explains in diverse posts his recovery 99% from pain hyperacusis, here, here2, here3
> @COYS , an hyperacusis pain solved case
> @Shell2211 also recovered, I think completely
> @Jesse Brinck had a solved curious case
> @yonkapin has a thread where he mentions quite a partial healing
> @Jan124 wrote very little on forum but apparently got better
> @StubbyJ is improving from radical pain hyperacusis
> @Contrast 99% solved pain hyperacusis

And now my non medical expert opinion from reading the forum on some possible explanations that make sense to me on common pain hyperacusis would be as follows;
> Not a solved case, but @Greg Sacramento who is quite knowledgeable on Tinnitus statistical chances posted from research that ear pain when somebody has tinnitus is 80% of the times has some kind of hypertension. If I got right the theory, this hypertension can be from different sources; general hypertension, moments (a kind of hidden hypertension, which I believe I probably have as my dad has it) or localized bad flow related due to neck/posture issues (which I probably suffer too), also sometimes due to TMJ.
> Caringmedical guys speak of C1-C2 instability cases where odd ear pain improved. In my case I maybe suffer this as well thus why I research, not sure if useful for you.
> Of course there're more possibilities, lots more to research. There's this "mystery ear pain" website on it as an example. Here they stress the TMJ but point out more stuff.
> From anecdotal reading, the pain hyperacusis cases on forum, I notice they rarely remain just in the ear but other issues around trigeminal area end up involved in most cases, just like neck is very frequently partially guilty, sometimes silently.

 

[Vassili]

I forgot to ask something else: when hyperacusis comes back in flashes, how long does it last? Thanks.

A day or two.

 

[Ben Winders]

So your story is a good sign. Can you travel by car/train/plane/subway by any way?

Mine started in March 2021 with mild hyperacusis, then in May I used the subway with hearing protection (still stupid) and then it got worse.

I hope you don't mind me asking, if you are using earplugs (or whatever hearing protection you have used), how can a car make your hyperacusis worse? Weren't the earplugs all the way in? Maybe you should have silicon custom earplugs made that fit snug into your ear canal.

 

[Taw]

@Vassili man, if I were you, I would be very happy, especially because you said you can travel (if I understood correctly, I am not a native English speaker either). I would give everything to be able to travel with a plane, currently I cannot handle a 1 hour trip in the car, the earmuffs cause a lot of pain, because of the pressure.

You healed 90%, probably you won't get cured 100%, but you could aim for a 99% So be happy because you won this battle, it's our duty (the rest of us) to win the war.

 

[Taw]

@anotherforumuser your post is fantastic, thanks a lot!
I will bookmark them also, the combination of healed pain hyperacusis from acoustic traumas are so rare.

I saw that you are from Madrid. Did you try the Otoclinica LLLT therapy? I heard it has helped some people.

 

[Taw]

I hope you don't mind me asking, if you are using earplugs (or whatever hearing protection you have used), how can a car make your hyperacusis worse? Weren't the earplugs all the way in? Maybe you should have silicon custom earplugs made that fit snug into your ear canal.

@Ben Winders, no problem, feel free to ask anything.

Earmuffs: seem to cause a lot of pressure and pain near my ears (when my wife is driving). I have Peltor X4A and X5A and I stretched them a lot. Maybe because I have TMJ for like 10 years.

Earplugs: I have like 100+ of them, different sizes and shapes and all of them cause ear canal burning pain after I wear them. My ENT said that my inner canal is very inflamed all the time. I think I have sensitive ears. I ordered 5 types, perhaps they fit me better.

Custom earplugs: Bought them 3 weeks ago (custom made, of course) but they seem very tight also, I have problems inserting and removing them and also cause pain. TBH I don't like the quality, I expected better and it does not protect that much (I feel like 15 dB). But I cannot return them.

The "good" thing is that the pain caused by earplugs is gone after 1-2 days of Dexamethasone drops. But I still have to find a long-term solution. This is one of my frustrations: I have this disease and the protection causes me pain. I will try wax earplugs, although they don't protect that much. If you have ideas, please let me know.

 

[anotherforumuser]

I saw that you are from Madrid. Did you try the Otoclinica LLLT therapy? I heard it has helped some people.

I'm from another city and did not know these guys. They look interesting, but it looks to me >90% chances my problems are in the neck, and cervical tinnitus does not belong in their menu so not visiting them either.

 

[Taw]

I'm from another city and did not know these guys. They look interesting, but it looks to me >90% chances my problems are in the neck, and cervical tinnitus does not belong in their menu so not visiting them either.

I have cervical and TMJ pain also for many years, but only after the acoustic trauma the real pain started.

The pain appears also when I speak, so I am pretty sure mine is 80% ear problem, and 20% other problems.

 

[Ben Winders]

@Ben Winders, no problem, feel free to ask anything.

Earmuffs: seem to cause a lot of pressure and pain near my ears (when my wife is driving). I have Peltor X4A and X5A and I stretched them a lot. Maybe because I have TMJ for like 10 years.

Earplugs: I have like 100+ of them, different sizes and shapes and all of them cause ear canal burning pain after I wear them. My ENT said that my inner canal is very inflamed all the time. I think I have sensitive ears. I ordered 5 types, perhaps they fit me better.

Custom earplugs: Bought them 3 weeks ago (custom made, of course) but they seem very tight also, I have problems inserting and removing them and also cause pain. TBH I don't like the quality, I expected better and it does not protect that much (I feel like 15 dB). But I cannot return them.

The "good" thing is that the pain caused by earplugs is gone after 1-2 days of Dexamethasone drops. But I still have to find a long-term solution. This is one of my frustrations: I have this disease and the protection causes me pain. I will try wax earplugs, although they don't protect that much. If you have ideas, please let me know.

The only idea I have is custom silicone earplugs... but to be honest I don't know anything about your condition, so I'm not sure if they won't irritate your ear canals either. I would assume they would irritate more than foam earplugs as foam is obviously softer than silicone.

Thanks for replying so friendly.

 

[anotherforumuser]

I am seeking advice.

Hi Vassili. I can hardly read your post history. I am not a health professional myself, but it seems to me that the remaining problem could be more general issues than your ears, particularly with tinnitus almost defeated?

I read you already excluded TMJ long ago and that extracting wisdom teeth did help you at some point. So what remains? All of this low tinnitus with pain around could be a hidden lesion in your back/neck or a body posture issue - which could be fueling the remains of your issues. I don't know what health professional is more adequate in the country you live to check each. Maybe a physical therapist, or maybe a second round to some TMJ specialist to see how did your mouth fare after so many months and if it still could be causing issues. Just an idea; it can be many things.

I have cervical and TMJ pain also for many years, but only after the acoustic trauma the real pain started.

The pain appears also when I speak, so I am pretty sure mine is 80% ear problem, and 20% other problems.

I thought my own issue to be solely noise too - in my case seemed clearer, as for a whole month all I had was tinnitus. Then, many details have shown me noise could be just a small part of the story - neck movements modulate tinnitus sometimes as an example. I have read from a couple of people mentioning (Greg and Tom Cnyc) that probably cochlear damage is sometimes the trigger for much stuff that was already in trouble inside us, thus the extremely common appearance of TMJ/neck issues short after acoustic trauma that we find out on forum. My theory is we're usually misled to believe it's all cochlear based as what we know "for sure" is the cochlear damage, but this could be just part of the story - even a minor factor in some cases.

Hmmm... When you speak you move your TMJ and your neck even more too, and anyway with your ear so inflamed now everything can be symptomatic, being impossible to tell what's smoke and what's the actual fire. In your case, a possibility is that TMJ/neck could be amplifying a lot of the ear issues in many ways, particularly as you know they were already dysfunctional. I am not an expert and tinnitus / pain hyperacusis works in mysterious ways, but I'd definitely recheck those if I were you. Just an idea; it can be many things.

Btw, I forgot yet another pain hyperacusis victory; @SignWithSilence (wall post).

 

[Taw]

The only idea I have is custom silicone earplugs... but to be honest I don't know anything about your condition, so I'm not sure if they won't irritate your ear canals either. I would assume they would irritate more than foam earplugs as foam is obviously softer than silicone.

Thanks for replying so friendly.

My earplugs are custom silicone earplugs but they are not that comfortable as I thought, still irritate my ears when inserting and removing them. I feel them as cheap quality also, maybe I will try some other audiologists.

 

[Vassili]

@Vassili man, if I were you, I would be very happy, especially because you said you can travel (if I understood correctly, I am not a native English speaker either). I would give everything to be able to travel with a plane, currently I cannot handle a 1 hour trip in the car, the earmuffs cause a lot of pain, because of the pressure.

You healed 90%, probably you won't get cured 100%, but you could aim for a 99% So be happy because you won this battle, it's our duty (the rest of us) to win the war.

Thank you for support.

I remember how I stayed at home during my first 3-4 months with this condition. Went out only to buy food. Lost my job.

 

[Vassili]

Hi Vassili. I can hardly read your post history. I am not a health professional myself, but it seems to me that the remaining problem could be more general issues than your ears, particularly with tinnitus almost defeated?

I read you already excluded TMJ long ago and that extracting wisdom teeth did help you at some point. So what remains? All of this low tinnitus with pain around could be a hidden lesion in your back/neck or a body posture issue - which could be fueling the remains of your issues. I don't know what health professional is more adequate in the country you live to check each. Maybe a physical therapist, or maybe a second round to some TMJ specialist to see how did your mouth fare after so many months and if it still could be causing issues. Just an idea; it can be many things.

Thank you for your post.
I do not have a history of TMJ-related problems or postural/neck problems. In my case it's a concussion, in other words a pure noise-induced problem.

Thank you for support.

 

[Taw]

I thought my own issue to be solely noise too - in my case seemed clearer, as for a whole month all I had was tinnitus. Then, many details have shown me noise could be just a small part of the story - neck movements modulate tinnitus sometimes as an example. I have read from a couple of people mentioning (Greg and Tom Cnyc) that probably cochlear damage is sometimes the trigger for much stuff that was already in trouble inside us, thus the extremely common appearance of TMJ/neck issues short after acoustic trauma that we find out on forum. My theory is we're usually misled to believe it's all cochlear based as what we know "for sure" is the cochlear damage, but this could be just part of the story - even a minor factor in some cases.

Yep, I am 100% sure that in my case it's a combination.

I always had sensitive ears. For example I did not like noise at all, it did not cause pain, I just did not like loud bars/cinemas/crowds.

Also, when I listened to my earphones on medium level, after a while I got pain in my left ear. The pain was there only when I listened to headphones, so I always stopped listening for like 1 month. Then I could listen but to a lower volume. I always used earphones at low volumes.

I know that TMJ and neck has a part of it, but the main problem is in the ear, because I had mild tinnitus for 20 years and the a sensitive ears. Now both tinnitus and ear sensitivities exploded.

Hmmm... When you speak you move your TMJ and your neck even more too, and anyway with your ear so inflamed now everything can be symptomatic, being impossible to tell what's smoke and what's the actual fire. In your case, a possibility is that TMJ/neck could be amplifying a lot of the ear issues in many ways, particularly as you know they were already dysfunctional. I am not an expert and tinnitus / pain hyperacusis works in mysterious ways, but I'd definitely recheck those if I were you. Just an idea; it can be many things.

Yep, when I move my jaw in front, tinnitus volume rises. It also rises when I move my neck or bend over with my head down.

I am wearing a mouthguard for the TMJ for 6 years (which helped) and for the neck I am doing some kinesiotherapy at home.

 

[RonnieThailand]

And now my non medical expert opinion from reading the forum on some possible explanations that make sense to me on common pain hyperacusis would be as follows;
> Not a solved case, but @Greg Sacramento who is quite knowledgeable on Tinnitus statistical chances posted from research that ear pain when somebody has tinnitus is 80% of the times has some kind of hypertension. If I got right the theory, this hypertension can be from different sources; general hypertension, moments (a kind of hidden hypertension, which I believe I probably have as my dad has it) or localized bad flow related due to neck/posture issues (which I probably suffer too), also sometimes due to TMJ.
> Caringmedical guys speak of C1-C2 instability cases where odd ear pain improved. In my case I maybe suffer this as well thus why I research, not sure if useful for you.
> Of course there're more possibilities, lots more to research. There's this "mystery ear pain" website on it as an example. Here they stress the TMJ but point out more stuff.
> From anecdotal reading, the pain hyperacusis cases on forum, I notice they rarely remain just in the ear but other issues around trigeminal area end up involved in most cases, just like neck is very frequently partially guilty, sometimes silently.

Thanks for putting together the list of success/improvements. I've had it for about 4 months now. Two types of pain, one which came just recently after I tested a muscle relaxant for two days (Orphenadrine citrate) while also coming off Clonazepam (so not sure which caused it but likely the relaxant or both). I've had the scorching burning "hot acid" feeling in my ears for 4 months, and this recent knife stabbing feeling only in one ear after the relaxants wore off (they actually seemed to get rid of all the pain on the first day and pain didn't set in again until they wore off, and this new pain in only one ear, my better ear, was MUCH worse than the acid burning feeling, though it's reducing since then).

In the beginning, I was convinced that it was nerve damage that caused mine, but since then I've been experiencing every symptom of TTTS, most of which was not present in the beginning when I had ringing tinnitus and loudness hyperacusis. So the PTSD-like symptoms and constant tension and anxiety, poor posture, clenching jaw every night (now have jaw tension/TMD) from the extreme tinnitus I had in the beginning may have caused this other disorder or maybe I had it coming anyways because of an acoustic shock. It progressed into a pulsatile high pitched hissing/cicadas tinnitus with pain hyperacusis after a few weeks. I'm unsure how or why the TTTS started, but I have every symptom I've ever read relating to that and it's the tonic type that is 24/7 present, not occasional flutter a few times here and there during the day. So I feel TTTS is a major cause of pain H for some people.

With this new stabbing pain, I can literally hear my eardrum being crinkled inwards by the tympani muscle in relation to mild sounds, then the intense pain in that ear begins. Again, this feels separate from the burning pain in both ears, but I was already suspecting TTTS with that as well so I do feel they're related. Nerves may be playing a role in my case since inflamed nerves have been found in cases of TTTS near these muscles. But the TTTS itself I feel is my main problem and should be added to the list of possible causes of pain hyperacusis/hypertension. Both clonazepam and muscle relaxers eliminated my burning pain hypearcusis in the short-term, as evidence of muscle involvement, though one or both of them made it worse when coming off.

 

[Tony1702]

@Vassili, back in June of 2020 you mentioned your tinnitus slowly graduated/changed to a gentle hiss.

Now, a year later, are you saying you no longer perceive the hissing tinnitus?

 

[Vassili]

Now, a year later, are you saying you no longer perceive the hissing tinnitus?

Hi, Tony!

Yes, I don't have hissing anymore. I have a very quiet static and when I block my ears with my hands I can hear ringing, sometimes faint, sometimes louder, sometimes no ringing at all, only static. Hyperacusis comes back in flashes. I have sort of flashbacks sometimes. Those days with hyperacusis make me depressed, still, after 21 months. But what can I do? Only hope for the better and wait.

Take care and have a great day.

 

[Tony1702]

@Vassili, thanks so much. That's positive. I have more hissing than tonal eeeee now. Occasional spikes still occur along with the sensitivity as well. The hissing got pretty loud last week and quite annoying, and for a moment I was worried I did something to cause it, or it's getting worse. So I'm hoping this is the next phase of recovery. Where I go from eeeee to hiss/static to where you are at today.

Do you recall how long it took from hearing hiss to not hearing it anymore? Seems like you habituated to the perception of it as well.

 

[Vassili]

Do you recall how long it took from hearing hiss to not hearing it anymore?

I think in my case first 1.5 years it was ''eee'' plus hiss plus static. Firstly ''eee'' went and then hiss went. Now only static. It's actually hard to tell. ''Eee'' went, then it came back and then it went again. I think you've got the point. Step forward, three steps back, step forward, two steps back.

My ENT told me it can take couple of years. I hope 2-3 years, not 9 years.

I can advise to let this whole situation go. Just protect your ears and live. Visit your doctor time after time. It's hard to do, I know. I struggle from depression till this day at times, but when I manage to let go thing change dramatically. I feel that I am living and going forward.

 

[Exit]

I think in my case first 1.5 years it was ''eee'' plus hiss plus static. Firstly ''eee'' went and then hiss went. Now only static. It's actually hard to tell. ''Eee'' went, then it came back and then it went again. I think you've got the point. Step forward, three steps back, step forward, two steps back.

My ENT told me it can take couple of years. I hope 2-3 years, not 9 years.

I can advise to let this whole situation go. Just protect your ears and live. Visit your doctor time after time. It's hard to do, I know. I struggle from depression till this day at times, but when I manage to let go thing change dramatically. I feel that I am living and going forward.

You're a lucky dog no matter what. Yes, very jealous

 

[GBB]

I think in my case first 1.5 years it was ''eee'' plus hiss plus static. Firstly ''eee'' went and then hiss went. Now only static. It's actually hard to tell. ''Eee'' went, then it came back and then it went again. I think you've got the point. Step forward, three steps back, step forward, two steps back.

My ENT told me it can take couple of years. I hope 2-3 years, not 9 years.

I can advise to let this whole situation go. Just protect your ears and live. Visit your doctor time after time. It's hard to do, I know. I struggle from depression till this day at times, but when I manage to let go thing change dramatically. I feel that I am living and going forward.

Do you mind briefly recapping which drugs you took? I recall maybe Betahistine and benzos but just want to double check.

 

[Vassili]

Do you mind briefly recapping which drugs you took? I recall maybe Betahistine and benzos but just want to double check.

Hey, sure.

Betaserc 200 mg - 2 times during first 6 months.
Bromazepam 3 mg - first 4 months (very responsibly).
Abilify (Aripiprazole) 7.5 mg per day - this is an antipsychotic which I'm taking to eliminate all stress that occured during last 1.5 years. I've taken it for 6 weeks already, 2 weeks to go.
K, Mg, Ginkgo Biloba, B-vitamins, D-vitamin.
Fish oil.

To be honest, nothing changed my tinnitus and hyperacusis. Time was my healer. Also good sleep and resting my ears. Plus I'm not cured completely but the ringing is almost gone.