My Journey from Tinnitus to Hyperacusis to Now TTTS → In Need of Support

My journey spans just over two years but I will keep it as short as possible as I’m looking for any and all help/suggestions/positivity I can get at this time.

I first started with what I now realize was a pretty mild case of tinnitus. This was at the start of the pandemic, and I don’t know the actual cause (at the time, I thought it was from a COVID-19 booster shot). Thus began my obsession with searching the internet and visiting “Google University” for hours at a time. Over the next year and a half, my tinnitus seemed to get slowly worse, from mild and unilateral to more moderate and bilateral. During that time (and still to a degree), I was definitely over-protecting my ears, even in places like restaurants where the noise level was nowhere near dangerous. Then came the initial issue of having my right ear react/cringe to noises like dishes clanking on a granite counter, silverware clanking, multiple people talking, etc. I figured that was some level of hyperacusis – ugh! That progressed to a chronic ear fullness feeling and severe crackling in my right ear that I could not “pop” my ears from. I thought it just might be some Eustachian tube issue. Then other symptoms came, like rumbling and thumping in my right ear. A visit to Google University quickly came up with Tonic Tensor Tympani Syndrome (TTTS). Needless to say, everything I read has made me beyond anxious and fearful that my life is now ruined. Most recently, that has progressed to my left ear as well. I am completely mentally distraught.

Through this journey, my family has been as supportive as possible, but my situation is wearing thin on them, and I don’t blame them. I am quite convinced that all of the progression from my initial mild tinnitus to today is the result of my obsessive reaction to everything and my extreme stress and anxiety levels. The fact that I brought this on myself just makes my anxiety worse.

I have appointments with an audiologist and ENT over the next couple of weeks. I saw both of these providers in the early part of this adventure and the audiologist a few more times, so these are not my first appointments with them. I don’t really expect much. I just want to check to see if my hearing has been affected (audiologist) and if there is any definitive diagnosis or treatment I can get (ENT). Based on what I’ve read (and “doom-scrolled”), it would appear that my only hope, short of surgery, is going to be up to me to address my anxiety/stress towards my tinnitus, hyperacusis and TTTS, and hope that will resolve at least the latter two. The problem is I am not an emotionally strong person, so the thought of it relying completely on my own emotional strength and self-discipline just makes me more anxious.

I guess the best-case scenario for me in the short term is that I can get some answers and direction from my upcoming appointments.

I do ask anyone reading this post to share what they may know or have experienced themselves that may offer me some sense of hope and positivity for my situation. I would give anything to be back with my initial mild tinnitus, and so wish that I had never become OCD with incessant internet research. With no other incident or event that could have contributed to my situation, I am left with the thought that I simply have done this to myself. Knowing that has me a half-step from major depression, thinking that I will suffer from this for the rest of my life.

My heart goes out to anyone who has or is experiencing something similar. Thank you for taking the time to read this.

 

Hi @Ksharky13. I’m really sorry to hear you’re going through this. Your experience isn’t unique, and it’s amazing what the mind can do when it latches onto something like a hearing problem. I can relate firsthand. I went through something kind of similar when I had an almost identical thing happen to me about five years ago, which matched your symptoms and timeline until my tinnitus drastically worsened last year from an acoustic trauma and became reactive along with sound distortions and some hyperacusis, so I’ve ticked every box at some point!

My advice to you would be to try not to panic; the audiologist and ENT appointments will likely be useless, but it is worth getting checked with an ENT to see if any sort of middle ear issue is going on. For some positivity, when I had an onset similar to this about five years ago, it cleared up on its own after a couple of years.

You could ask your GP to prescribe you a handful of Clonazepam to see if it takes the fluttering away, which might help confirm it’s TTTS, but you’ll have to twist his or her arm probably to do this, and they aren’t a long term treatment solution.

You’ll get all sorts of contradictory opinions here, but after a year of experimenting and doing far too much research after my own worsening, I would suggest a handful of things.

If sound therapy makes it worse, don’t do it.

Protect from loud sounds, but slowly see how you get on with nature sounds from walks.

In terms of supplements, I’d only bother with Magnesium L-Threonate or Bisglycinate; I’ve tried everything, and nothing really makes a difference.

Try committing to mindfulness as a coping strategy and something that will positively affect your brain. Some will scoff at the idea, and I would’ve at one point, but the science is there in terms of it positively rewiring the brain, which is something you need to try and do.

Get out in nature as much as possible and try to do as much exercise as possible; both will help with the anxiety and depression aspect and hopefully help with some graded sound exposure, too.

I’m sure others will join to share their thoughts.

 

If it feels like an eardrum is thumping or fluttering, it's probably Tonic Tensor Tympani Syndrome (TTTS). I have that intermittently as well, sometimes spontaneous thumps and sometimes fluttering due to sounds (voices, typing).

Sometimes the thumps even happen for a while when I wake up in the middle of the night, which makes getting back to sleep more difficult. The thumps lasted for 6 hours a few days back, the longest ever, so it doesn't seem to be improving, and will happen at times when my anxiety is low.

But getting anxiety under control is important. I'm still trying to accomplish that 2 years since my worsening.

 

Welcome to the forum. Sorry to hear about your struggle with tinnitus, hyperacusis, and TTTS.

Is the hyperacusis pretty recent? Hyperacusis usually fades in a year or so. I had it twice, and both times it just faded away in about a year.

I don't have TTTS, but calming techniques can generally lower the intensity of the symptoms.

I used to be overwhelmed by my ultra-high-pitched tinnitus in the right ear. Then, two years ago, I suddenly lost my hearing in the left ear. A new loud jet-engine-like tinnitus came to the left deaf ear. It was quite a challenge to lose my balance, too.

But the struggle was initially tough, and then slowly, I habituated to the ringing. Now, I live a normal and absolutely enjoyable life.

Hang in there. Things will improve over time. Stay positive and calm. That will help a lot with your nerves and TTTS. Take care. God Bless.

 

Hi @Ksharky13.

Since you were experiencing symptoms of tinnitus prior to the COVID-19 booster shot, I suspect your tinnitus might be noise-induced, although it's quite possible the COVID-19 vaccine made the tinnitus more noticeable.

Exposure to loud noise is one of the most common causes of tinnitus and typically, it is listening to audio through headphones at too high a volume that causes it. Prior to you noticing tinnitus, if you were regularly using headphones, earbuds, headsets, AirPods, noise-canceling, or bone-conduction headphones, then it's likely your tinnitus is noise-induced. The fact that you are experiencing hyperacusis, too, might also be an indication you have noise-induced tinnitus because this condition often accompanies tinnitus that is noise-induced.

Exposure to other types of loud noises can also cause tinnitus. Attending clubs or concerts regularly where music is played loud can cause tinnitus, even if one is wearing earplugs. Playing loud music in a band or listening to loud music through speakers can also cause tinnitus.

I understand your reasons for wanting to read information online about tinnitus, but sometimes, reading too much about tinnitus online can do more harm than good because tinnitus and, to some extent hyperacusis, are intrinsically linked to a person's mental and emotional well-being and cannot be separated from it. Stress can make tinnitus worse, and tinnitus makes stress worse. One needs to be careful in order not to find themselves becoming too down.

The Internet can be a wonderful source for accessing information, but unfortunately this may not always be a good thing, particularly when it comes to medical conditions and diagnosing them. Please click the link below and read my thread: Keeping Things Simple with Tinnitus.

You may or may not have TTTS, so it's best to wait until you get a confirmation from your ENT doctor. For now, I suggest that you try to reduce or stop reading information online about tinnitus. Instead, shift your attention to more positive things, as this will help to take your focus away from the tinnitus. Engage in the things you like to do or start a new interest or hobby.

Start using low-level sound enrichment during the day and especially at night. More about this is explained in my thread: New to Tinnitus, What to Do? I advise you also to read: Hyperacusis, As I See It, The Habituation Process, How to Habituate to Tinnitus.

If you have been listening to audio through any type of headphones, my advice is to stop using them, even at low volume, for now.

All the best,
Michael

Keeping Things Simple with Tinnitus | Tinnitus Talk Support Forum

 

TRT is useless.

→ Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of Life: A Randomized Clinical Trial

 

Hi @Cmspgran.

Thanks so much for taking the time to respond and for the helpful advice. As you can tell, I am dealing with a very high level of anxiety at this time, not all (but most) related to my auditory system dysfunction. I’ve seemed to attract the Big 4; tinnitus, reactivity, hyperacusis, and now TTTS. You didn’t say whether or not you also had TTTS (I did get that you had tinnitus and hyperacusis). Can you clarify that, and if you had it, did it also resolve?

I did have my hearing test at the audiologist today and the results were very good. Virtually no change from last year’s test and only mild high-frequency hearing loss at 6 kHz and 8 kHz in the right ear. I apparently have very good hearing for my age (64). Now on to my ENT appointment next week, of which I have very little expectation. For me just the act of going to the appointment will be a victory. I was very anxious at the audiologist out of fear that a simple audiology exam could worsen my condition. I felt so relieved that it was so benign and that I actually went through with it.

It’s helpful to hear success stories from people like you who have had a similar experience that eventually resolved in time. My mood and outlook changed by the minute, from feeling distraught that this was going to be for life, to thinking, “I’m tough enough to face this head-on and beat it.” Right now, the best part of my day is when I go to bed and sleep and forget about it. The worst part is waking up to the realization that it’s real and still with me. I feel that I can’t (and even don’t want to) interact with the world like I used to. I really miss the "old me." It’s like I don’t belong anymore. The toll it’s taking on me and my family is scary.

Thanks again for your comments. Take care.

 

Things may change for the better, especially when the nerves harden to the ringing. I never believed that I could habituate, but I did, and it took time and patience. I used to wake up with the loud ringing, and my nerves automatically went into panic attack mode. I had to instantly use sublingual Ativan to try to calm my nerves from a full-blown panic attack. Now, my brain is hardened to the ringing. It doesn't care a dime about it. This will happen at some stage, especially if you focus on some new hobbies or projects, when the limbic nerves will be replaced by the parasympathetic nerves, and you no longer function in fight or flight mode. It will take some time. Try to be positive and patient. It will get better. God Bless.

 

Hi @Michael Leigh.

Thanks so much for your response and suggestions. Over the last couple of years I have certainly read many of your posts.

Actually, I don’t believe I had tinnitus before the COVID-19 booster (and not sure that’s what caused it), except back in my 20s & 30s I did have mild tinnitus a couple of times from concerts that resolved and never really bothered me. I am 64 now so it’s been a while but I could have had very quiet tinnitus lurking somewhere just waiting to come out.

Since my 30s (and even during) I have been very careful with my ears/hearing, wearing protection and concerts and other loud events/situations. However, I do have to admit that during the pandemic and lockdown I did get into the habit of listening to videos and music on my PC via headphones, albeit at a very moderate volume. I guess that could have triggered it.

My audiogram yesterday showed only a slight hearing loss in one ear at the 6 kHz - 8 kHz frequency. I’m going to assume that it is similar, if not worse, at frequencies higher than that. That said, since I got the first “mild” tinnitus 26 months ago, I’ve been extra careful with my ears, maybe to the point of over-protection. I also got severe anxiety about the potential of it getting worse, including extreme anxiety about COVID-19 (I have not had it as far as I know, maybe had an asymptomatic infection). But my tinnitus kept getting slowly but surely worse. Now I have some hyperacusis, and I’m pretty sure TTTS, too. So now I am over-the-top anxious and fearful about this and the prospect that the rest of my life (upcoming retirement) is ruined.

Anyway, that’s my story. Having a good audiogram yesterday really helped my anxiety, and I had a really good night. I’m hoping that, along with whatever the ENT says next week, it will help to lower my anxiety and start to resolve my hyperacusis and TTTS. The information out there on TTTS is so scary; it seems like it’s a lifetime syndrome that is nearly impossible to treat. Maybe I just need to stay off of the internet since it mainly seems to have worst-case scenarios that only add to the anxiety and fear.

Thanks again for taking the time to respond to my post. Take care.

 

You are welcome @Ksharky13.

I am pleased that you have been reading some of my posts. If you print and read again the ones I'm going to mention below, I believe you will find they can help lower your stress and anxiety. It is important that you print the articles and not just read them on your phone or computer monitor. This way, you will absorb and retrain the information better.

Listening to the audio through headphones, earbuds, headsets, AirPods, noise-canceling, and bone-conduction headphones is one of the most common causes of tinnitus. Many people don't realize they are listening to audio at too high a volume. It is not just the volume that can cause tinnitus but the duration a person is using these devices is also important without giving the ears sufficient rest.

The ear canal is just over one inch (26mm) in length; it is one of the reasons a lot of people who work in call centers develop tinnitus because they are wearing headsets for many hours. The fact that you are also experiencing hyperacusis, I believe that your tinnitus is noise-induced, as you have admitted you listened to audio a lot through headphones during the pandemic. Hyperacusis is almost always linked to noise trauma, to the auditory system, and the person has developed tinnitus.

Please try not to be too alarmed because your symptoms can improve. The first thing I advise, which I have mentioned in my previous post, is to stop reading information online about tinnitus.

I do not believe you have TTTS, although I could be wrong. It is quite easy to self diagnose from reading information online and be completely wrong. Such practice can cause all sorts of stress and anxiety issues because tinnitus is an integral part of our mental and emotional wellbeing and cannot be separated from it.

This is the reason I advised you to read my thread: Keeping Things Simple with Tinnitus. I also advise that you print my post: The Complexities of Tinnitus and Hyperacusis.

I believe if you print the following threads: Tinnitus and the Negative Mindset, Acquiring a Positive Mindset, along with those I have mentioned above and in my first post, your stress level will start to decrease. It will take time so please refer to the articles often, as they will help to reinforce positive thinking. Remember, stress can make tinnitus worse and tinnitus can make stress worse.

Counseling with an audiologist who specializes in tinnitus and hyperacusis management could also be helpful.

I advise you not to listen to audio through any type of headphones and to start using low-level sound enrichment. My posts explain more about this.

All the best,
Michael

 

Yes, it actually might be a good thing to stay off the internet for some time if this is your wrap-up of what you have been reading about TTTS. I don't know which stories you've read, but most people I know, including myself, do get better, especially regarding TTTS. Flare-ups may happen, though.

TTTS, to many people's knowledge, is very anxiety and stress driven. It often appears after stressful periods and usually in relation to acoustic traumas and so forth. Once you get to the point where your auditory system is sort of acclimatized again, at least to a degree where you function "normally" again, and you begin to lower your stress/anxiety and hypervigilance, TTTS have a great chance of getting a lot better - and possibly complete remission.

 

Thank you so much for your response and words of encouragement. Without question, this is the most stressful thing I have ever dealt with. It is really causing me a severe level of anxiety and fear, not only about what it is now but about how much worse it could get and possibly remain for life.

I appreciate your positivity about the likelihood of it getting better or totally resolving. I have moments where I can believe that, but so much of what I have read, not just forums but clinical sites, seems pretty clear that there is no cure and that it is a lifelong situation. I'm praying that's not the case. I was already going through a serious anxiety disorder for over a year when this hit me, so I guess it could have been the catalyst for this. I have an ENT appointment next week, but based on what I've read, they're pretty useless when it comes to this issue.

For me it’s strange in that it seems a bit different in each ear. My right ear feels plugged/full all the time and reacts to most sounds with a little pull and rumbling/rushing sound. My left ear has some of that but also random thumps that don’t seem to be noise-induced. For both, it seems to get a little worse every day. The right ear used to react to just things like plate clanking, silverware, and other high-frequency sounds. Now it’s people just talking. The right ear was the only one affected a couple of weeks ago. Now the left is being affected, too.

Do these symptoms sound like what you had? How long did it take for yours to improve, and did you do anything or take anything that helped?

Thanks again for your comments and support. Take care.

 

Well, I'm not sure if your biggest obstacle at the moment is TTTS or hyperacusis (sensitivity to noise)?

What I refered to in my post was mainly TTTS.

Fullness and rumbling noise (a vibrating feeling) are very common with TTTS. And the more those muscles in the ear contract and tense up, the more you will feel it. And the more you think of it, the worse it gets. Racing thoughts where you get stuck in the loop of worst case scenarios.

You need to adjust your soundscape as best possible to something that triggers it less and something that may distract your mind.

I would use a stack of Bioflavonoids and Magnesium (Glycinate, for instance) + B-vitamins and an A-complex. You could also try some tonic water (with quinine). It might help a touch, but it might not. You have to try to know what difference it could possibly make for you. There is no definitive conclusion.

Even so, the most important things are as little stress as possible, meditation/breathing exercises, mindfulness (which could be any activity that brings your mind to what you do/see), and sleep. The body's repair, including muscles and nerves, happens when we are asleep.

I don't believe your TTTS is for life, but tinnitus/hyperacusis might be, to some degree, if they last more than six months. But the brain is capable of habituating and adjusting to a lot - if we manage to let it. Neuroplasticity is real.

 

That sounds a little like my situation. That's TTTS. There is no plugged/full feeling for me, but each ear is different with TTTS in my case. My right ear has the repetitive random thumping episodes that aren't triggered by external sounds, and my left ear occasionally flutters to voices.

But recently, I've had some right ear thumping & fluttering to keyboard typing instead of just the random thumps I used to have in my right year. My worst episode of the right ear spontaneous thumps was a record 6 hours just recently, with varied delays between thumps of immediately to 30 seconds or longer, so it seems to be trending towards a worsening condition since it started recurring in June 2023, about 1 1/3 years after my tinnitus worsened suddenly in February 2022, and hyperacusis became evident in July 2023 and continues about the same, where sensitivity causes noises to be internally amplified and sound louder than they really are.

TTTS symptoms only happened once early on, back in February/March 2022, after my tinnitus worsened when my anxiety was highest, and my anxiety is still high a lot of the time from severe variable tinnitus, even though those spontaneous thumps can start simply from waking up in the middle of the night or otherwise a lower anxiety time.

I just hope the TTTS and hyperacusis get better with time as it does for some people. I don't think that's going to happen with tinnitus as long as there's no treatment.

 

Gotta be the vax. Just too many reports of sudden tinnitus after it. Moderna had a huge dose. I also took two shots of Moderna first. I had a severe reaction (no tinnitus), so later, I followed up with two Pfizer boosters, and had a much milder reaction at those times. While my tinnitus has been 100% caused by self-inflicted acoustic trauma, perhaps combined with an infection/virus I was recovering from; I keep wondering if the jabs primed me for it. The thing with the brain seems to be it can take a certain amount of hearing damage. Maybe the vax brought me/us close to the edge. I will never know, I guess. I wish I had read about the vax causing tinnitus; I'd have been more cautious taking it (I'd seek Pfizer, I guess), and first of all, I would learn about tinnitus...

Sorry, you're in this. I don't buy the anxiety explanation. That's a cop-out and used by helpless (and clueless) doctors to gaslight patients. Do not let them.

And a warning! ENTs and audiologists can hurt you. Do not let them do any loud tests like tympanometry or acoustic reflex test. Or microsuction, for that matter (to clean wax). They may assure you these are safe. They are not for people with tinnitus and especially with hyperacusis. In many people got their even mild symptoms turned into suicidal levels. You have been warned.

 

I already had tinnitus for years, but after a sudden worsening, I later looked back to see how long it had been after my COVID-19 booster. The tinnitus worsened 3 full months after my third Moderna COVID-19 shot, so I don't think it was a factor in my case. I've had 3 additional Moderna COVID-19 vaccinations since with no noticeable change in tinnitus in the weeks following.

With so many millions getting the vaccinations, it makes sense that some people would get tinnitus by coincidence since it is not uncommon, but it's hard to prove. I have seen that the incidence is. higher, yet still low, with some other like the flu.

Of course, IIRC, I had heard about people getting tinnitus from the COVID-19 infection about 4 years ago before the vaccinations were even available.

And still, there's no treatment for tinnitus.

 

Thanks for your comments and advice. I will certainly print out the posts that you mentioned. I haven’t used headphones since my initial mild onset back in January of 2022. I have been extremely careful, probably to the point of over-protecting since then. I am praying that if I can get my anxiety under control, that will have a ripple effect on my tinnitus, hyperacusis and TTTS.

Regarding TTTS, I seem to have all of the classic symptoms, and based on everything I’ve read, I think there is little to no chance that it is not TTTS. I hope your assumption plays out, but I’m pretty much resigned to the fact that I do have it. I think the ENT appointment next week is going to be a major disappointment. I feel they’re either going to try to blow it off as ETD or TMJ or something similar, or they’re going to say, “yup, MEM/TTTS, and there is nothing we can do about you’ll just have to get used to it.” That will devastate me.

Regarding hyperacusis, I think I have it, as I have a visceral reaction to certain sounds like dinner plates clanking together, silverware, and other higher-frequency noises. I don’t appear to have any pain associated with it, though. But it does make my ears “tighten up” (the tensor tympani muscle, I’m assuming). Unfortunately, other sounds, like people talking, can make my ears tighten up, too. That just sucks. Any thoughts on if you think this is hyperacusis and if it can go away over time?

The thought of having to go through the rest of my life (I’m 64, so my entire retirement years) is beyond depressing. I know I’m not a very emotionally strong person, and the thought that I did this to myself via severe anxiety is crushing. My gut is telling me that this is going to be a permanent part of my life going forward. I don’t even want to interact with the word anymore. Every time I think about something I want to do in retirement, I just get sad and pretty much cross it off the list.

Thanks again for your comments and support. Take care.

I’m curious as to the basis for your comment that “most people I know do get better, especially regarding TTTS.” Is this based on a few people you know or some research, etc.? I ask because the vast majority of what I’ve read and researched indicates that TTTS is simply a horrendous condition that is neither curable nor treatable, and that its impact on people’s lives is like a never-ending Stephen King horror movie.

While my initial mild tinnitus may have been noise-induced (or COVID-19 vaccine), I’m pretty sure all of my worsening since, including hyperacusis and TTTS, have been anxiety-induced. One would think that by addressing anxiety, you could reverse the hyperacusis & TTTS, but I don’t know if the already-lowered threshold shift of the tensor tympani muscle can be reversed. It may be permanent damage.

I have my ENT appointment tomorrow, and I am praying that he tells me that either I don’t have TTTS, or if I do, he has some good treatment options. To be honest, I believe that I am going to find out from him that my life, as I have known it for 64 years, is essentially over, and my retirement “golden years” are going to be chronically painful and distressing. My anxiety level is already severe. Any bad news tomorrow is likely to put me over the edge into a deep depression. I could lose my family over this as I won’t be able to live another 15-20 years with this. I can’t believe this is happening to me out of nowhere. Feels like a punishment - very cruel.

 

You are welcome @Ksharky13.

I understand how you feel. This is why I have advised you to print my articles, then take time to read them and refer to them often, because they are a form of counseling. Over time, they will help to reinforce positive thinking.

You may or may not have TTTS. If you have it, then please do not despair because it can be treated.

A patient with TTTS is usually examined at ENT and then referred to Audiology for further assessment and treatment. Therefore, I tend to believe you will be advised to see an audiologist who specializes in TTTS, tinnitus, and hyperacusis management. This is the same health professional that helps to treat patients with tinnitus and hyperacusis.

It is important that you are examined at ENT so they can rule out any underlying medical conditions causing your tinnitus, hyperacusis, and TTTS, if you have them. Please keep in mind that ENT doctors are highly skilled medical professionals and play an important role in treating any underlying medical conditions that affect the ear, nose, and throat.

It is my understanding that ENT doctors do not treat tinnitus or hyperacusis once it's determined that no underlying medical condition within the auditory system is causing these symptoms. The health professional to see would be an audiologist who specializes in tinnitus and hyperacusis management. Treatment can involve sound therapy using white noise generators, counseling, and medication.

Although TTTS affects the middle ear muscle (tensor tympani), treatment for it can involve stress and anxiety management, sound therapy and medication. Therefore, I believe the correct health professional to see would also be an audiologist that specialises specialises in tinnitus and hyperacusis management. I am sure your ENT doctor will be able advise you further.

I am also 64 years of age. On April 4, I will have had tinnitus for 28 years. I once had very severe hyperacusis with pain, which was successfully cured by having TRT treatment for 2 years. This involved wearing white noise generators for up to 10 hours a day and having regular counseling with an audiologist.

I had a severe setback in 2008. My tinnitus changed to variable tinnitus, and it took 4 years to habituate for the second time. Please read my post: My Experience with Tinnitus: Can I Habituate to Variable Tinnitus? Hyperacusis can be cured or reduced significantly with or without treatment. Please print my post: Hyperacusis, As I See It.

You will get through this, so try to keep strong. Talk to your GP/PCP and explain how you feel.

All the best,
Michael

 

@Ksharky13, please do not believe what this individual writes; he repeats some outdated beliefs about these diseases and dishes out dangerous advice. There is no world where adding more noise into your auditory system will cure hyperacusis and certainly not noxacusis. It is debatable what he had, but if he healed, it would be despite adding additional noise, not because of it.

TRT is in contradiction to what we know now about the source of tinnitus (hyperactivity in Dorsal Cochlear Nucleus). Loudness hyperacusis is less understood; it's either central gain and/or hyperactivity of bushy cells of the Ventral Cochlear Nucleus. Hyperacusis is more likely to improve or go away than tinnitus on its own, hence how people think they "treated" or "cured" it. Finally, pain hyperacusis (noxacusis) is the least understood. It is a combination of pain originating in the middle or inner ear and can be combined with central sensitization. In the latter case, gradual exposure to normal sounds can lead to an improvement or cure, provided it is combined with positive reinforcement. Again, there is no way that pumping white noise into ears can elicit positive reinforcement in anyone.

Just ignore what @Michael Leigh writes (it is not a real name, by the way; you may think it is, giving him more credibility). His writings contain tidbits of useful information, but as a whole, they are outdated, incorrect, and dangerous.

 

I think you meant to say "My hyperacusis improved on its own with time, like in almost all cases, and I got lucky that blasting my damaged ears with noise didn't worsen me any further."

 

Update on my situation: I had my ENT appointment last week. He basically confirmed what I already thought, unfortunately. However, he said it is highly likely to be stapedial MEM and not TTTS, based on my description of my symptoms and his experience. Actually, this seems like worse news since, based on what I’ve read, that is more difficult to resolve than TTTS. Needless to say, I am even more stressed out than before, which is not good at all. He also said that I probably have sound sensitivity/phonophobia and not technically hyperacusis. I guess that’s somewhat good news, but who knows? Interestingly enough, he said my crackling when I try to unplug my ears is due to ETD and is not related to or caused by MEM. That surprised me.

He did refer me to another otolaryngologist who specializes specifically in the ear (no nose and throat work), the theory being that he should have more experience with MEM and may be able to recommend certain treatments, etc. Meanwhile, my symptoms seem to get worse on a daily basis. My ears seem to react to more everyday sounds at normal volume levels and the fullness feeling is always there. It seems if I keep busy or if I am around more sound, then it bothers me the least. It’s when I’m in a very quiet space that I experience the sensations more (tinnitus, fullness, eardrum tightening).

I spend a good part of my days stressed/depressed about this, and I have basically given up hope of ever feeling “normal” again. The thought of living the rest of my life with this is beyond crushing. I can’t relate to, nor do I want to interact with, the world anymore. Any thoughts, comments, or advice would be greatly appreciated.

 

It sounds like he didn't really determine anything from testing and is just speculating.

From your descriptions earlier, it sounds like TTTS (which is a type of MEM). Do some sounds sound louder than they used to, or do you just fear sounds? With hyperacusis, they sound amplified.

If you see the other specialist, maybe you will get a different answer.

Some people say TTTS can get better over time, but I've only seen mine worsening since my tinnitus got severe over two years ago. Anxiety doesn't appear to play any role since it's usually not happening when my anxiety is the highest, while it can happen when anxiety is low.

 

Thanks for the response. Yes, the ENT pretty much based his diagnosis based on minimal tests and long conversations. As you know, they can’t really see inside the middle ear without some kind of invasive procedure. But he did, at least, seem pretty knowledgeable about MEM & TTTS. It seems a lot of people on here have seen ENTs who are not. I’m kind of hoping it’s TTTS, as it sounds like stapedial MEM is the worse of the two conditions with respect to the potential to resolve.

I don’t really hear sounds to be louder/more amplified than normal. It just seems that I have a visceral reaction to certain sounds (dishes clanking, silverware, some voices, PC speaker) that make one of the two middle ear muscles retract the eardrum, so it may just be sound sensitivity from fear/phonophobia. I’ve been so amped-up anxiety-wise over the past 1.5 years about tinnitus (i.e., over-protecting when not necessary) and the fear of it getting worse that my brain may have lowered the threshold of sound it takes for those muscles to engage.

I am hoping that the other ear specialist can offer more insight and help. I’m also hoping that getting my mental health in order will also help. I’m holding on to a thread of desperate hope that this won’t be a lifelong situation. I’m 64 and was looking forward to an active and happy retirement, which is not possible in my current state. I feel horrible, not just for me but for my family. It has to be difficult seeing me go through this. I’m not the father or husband I used to be two short years ago.

Thanks again for your comments. I wish you well.

 

HI all.

Well, I have reached a point where my chronic anxiety & panic disorder have gotten to the level that I’m convinced I have no other choice but to try an SSRI to deal with it. I had been on one for about 25 years and stopped in 2022 (which I believe opened the floodgates to where I am today). I did not suffer from any side effects when I was on the SSRI, and shared wisdom would indicate that I should be OK getting back on the same one. However, I’ve made the mistake of reading so many horror stories about SSRIs and tinnitus that I’m petrified of trying one again. My tinnitus has gradually progressed over the last couple of years and is noticeable throughout the day. My MEM/TTTS doesn't help the anxiety, either.

I know I can’t live like this much for the rest of my life. Every day, I wake up to severe anxiety feeling in my body, with constant lightheadedness, a feeling of shortness of breath, and general weakness. I used to get that periodically throughout the day, but now it’s 24/7. And, if I wake up in the middle of the night, I may toss and turn for hours and not get sufficient sleep. I recently had a cortisol blood test, which came back as “high” (25.1, with the upper range being 23). I'm unsurprised due to how I feel; I figured it was high. I’m assuming that accounts for how my body feels all the time.

I would appreciate any words of support, encouragement, or personal stories of success. I miss the person I was just two short years ago, and I’m sure my family does, too.

 

You are wise to know your body. I had to turn to Mirtazapine for relief when my hyperacusis/tinnitus came into my life at age 30, almost a year and a half ago. There's some reason to believe tinnitus, hyperacusis, and MEM/TTTS are the same hyperactive neurology that produces panic and anxiety in us anxiety-prone individuals, only auditory manifestations. I'd be lying if I said I didn't have an anxiety disorder. I have for life; it's genetic for me. You combine that predisposition for anxiety with any amount of hearing loss (which I incurred from a long concert last year), and boom - you have disruptive tinnitus and hyperacusis. The fight or flight train has left the station.

Since hyperacusis/tinnitus appeared in my life, I've had a re-emergence of my longtime panic symptoms over things like public speaking, work meetings, driving over bridges, heck, and even sometimes a fear of choking on food that's impacted my ability to eat/swallow comfortably. When anxiety begins to produce such disruptive physical symptoms, I think it's wise to return to the psychiatrist. If you're not sleeping and eating sufficiently, everything else goes to shit. That's where Mirtazapine was a huge help to me personally.

Everyone on here has their own experience and opinions with their hearing and anxiety disorders. What medication makes one person worsen gives another their life back. Don't be afraid to return to the tried and true routine that helped you in the past, medication or otherwise. And to impart my own experience, a drug called Auvelity (a newer fancy antidepressant which has Wellbutrin in it) did make me worse after three days. I think it fueled the neural hyperactivity in my auditory system. I'd say as long as you're going back on a medication you know well and it isn't known to exacerbate anxiety (Wellbutrin is in many individuals), you should feel confident in taking this step to regain control.

You got this. You have a 100% survival rate until now; don't forget that.

 

I guess you should try it if the alternative was the unthinkable. It seems some people were able to get to the "I don't care even about my severe tinnitus," and some are helped by such drugs. But you probably should never get off it because I agree it is the pretty reasonable assumption they "primed" you for this (can't be 100% sure, though).

But consider if you can think of alternatives. Would you relocate to a vacation spot for a few months? Would you prefer a nicer climate? Would you like to experience some nature heaven? For some people, an elevation change (barometric pressure) can influence tinnitus. Maybe you can find some distractions? For me, the best distraction has been intense work, which is crazy because I have always preferred to do other things and wished to retire early.

As many here say, time does help. I would have been in a pretty good spot if my tinnitus had remained stable—even as bad as it was a year ago (it is much worse now, plus noxacusis). So keep it in mind—I will repeat: time does help, whether you believe it or not. But protect your ears! Even if your tinnitus wasn't due to noise trauma, you still need to treat it as if it was.

Please keep us updated on how you do. Good luck.

 

I also want to mention that I have been trying not to over-protect my ears/hearing. I still protect in typical loud scenarios, like using lawn equipment.

However, I went to a restaurant in an old Victorian house last week. Not too big, maybe 15-18 tables. It was pretty full on Saturday night, and the din was fairly loud but not "dangerous" in the traditional sense. However, after about 10 minutes, my nerves/anxiety got the better of me, and I put in foam earplugs. That very much helped my anxiety, but I do believe that over-protecting is not a good thing. If you stay in total darkness for a period of time (i.e., over-protect) and then go outside on a sunny day (exposed to average noise level), you will not react well to the sudden brightness.

I know this is a controversial topic, but I do think that over-protecting over a year+ is what probably led to me acquiring MEM/TTTS, which has made my anxiety ten times worse.

 

I think this is possible. In my case, I didn't overprotect at any point; about an hour of protection on a bike ride is the longest, but after I stopped working a job, I was exposed to a lot less background noise throughout the day. I only had two instances of TTTS while working through 16 months of severe tinnitus in that work environment, with a wide gap of many months between those two instances.

After becoming unemployed, TTTS became a regular occurrence within weeks, which has been over ten months now, often even spontaneous TTTS thumps without sound stimulus, that I had never experienced while I was still working. It's much quieter in my home than in the building I worked in.

I really haven't seen a connection between my anxiety and frequency of TTTS, though, that some point out. Fortunately, while TTTS thumps have occurred every 20 seconds or so over a few hours straight before, it usually doesn't go on near that long or doesn't happen at all some days, so it is a lesser problem for me compared to tinnitus, insomnia, anxiety, hearing loss, and pain.