Desperate for Help with Severe Reactive Tinnitus and Life Impact

[helpmyears]

Hello everyone, this is my first time posting. I will try to make this as brief as possible.

In October 2024, I experienced lower-frequency hearing loss following an ear infection. After treatment, the hearing loss is now only mild, but I have been left with multi-tonal, reactive tinnitus. I have around four different tones: a hissing sound that comes and goes, a pylon-like electric noise, a ringing tone, and a high-pitched whistle that worsens with sounds like cars, fans, hairdryers, and so on. All of these sounds react and become louder in response to general noise, including talking and everyday environmental sounds.

I also have a low buzzing or humming sensation that feels like fluttering in my ears. It stops and starts when I speak. I'm scheduled to begin treatment for this soon, as it may be middle ear myoclonus — although it might just be another form of tinnitus.

The reactive nature of the tinnitus has had a devastating impact on my life. I feel completely overwhelmed and don't know how to make the reactivity stop. The stress has caused me to lose a stone in weight. I feel sick with anxiety every day and have diarrhea every morning. I'm struggling to care for myself, and my parents have been helping look after both me and the kids, as my husband works away for a month at a time.

I am not coping. I feel lost. I keep reading conflicting advice — some say to protect your ears, which I've been trying to do, but it's very isolating and difficult. I am extremely depressed because I can't talk, spend time, or interact with my family without the tinnitus worsening. I can't watch TV, listen to music, drive, or go out anymore. I'm basically housebound.

Am I doing the wrong thing? Should I actually be exposing myself to more sounds so that my ears gradually stop reacting this way? I have no idea which path to take. I feel like I'm spiraling, and I'm desperate.

PLEASE, PLEASE HELP ME.

 

[Cmspgran]

Hi, your symptom set sounds like a mirror image of mine. I am over two years into this worsening, with resulting reactive tinnitus—which I did not even know was a thing until my standard tonal tinnitus turned reactive after an MRI scan.

First of all, I am sorry this is happening. I can completely relate to the anxiety and toll it is taking, as I have experienced it and still continue to do so. There is a lot of conflicting advice out there, but I would recommend adopting a sensible middle ground. Clearly, avoid loud noise, but do not isolate yourself from all sound. I believe complete isolation can potentially lead to issues like central gain, and living in a silent "Faraday cage" environment is not going to help your mental health.

You have several options.

Psychological:

CBT and ACT have shown some small benefits. In my opinion, they are most effective for more typical cases of tinnitus, while severe reactive tinnitus is a whole different beast. That said, seeing a counselor—or even just talking to a friend—can help to offload some of the emotional burden. Mindfulness meditation often gets dismissed, but I do believe in the mind's ability to help us cope. It is worth looking into.

Pharmacological:

There is the Neuromed approach discussed on this forum, which links reactive tinnitus to migraine. Personally, I am not entirely convinced, but there is a lot of information available in those threads, so you can judge for yourself. The "nuclear option," and the one I have chosen, includes Clonazepam and, in my case, Pregabalin for sleep, as I cannot get Gabapentin. I was previously taking a low dose of Mirtazapine for sleep, but it left me feeling like the walking dead.

Right now, you are likely in a full-on fight-or-flight state. It may take some combination of counseling, medication, and adequate sleep to bring you back to a place where you can even begin to reclaim a normal life.

We are here for you. We understand what you are going through. Keep asking questions and venting—there is still hope to hold onto.

 

[Nes]

Hello, my tinnitus is almost the same as yours. In my case, I have found that it is best to expose yourself to sound only when you feel safe or when you are having a better day. Do it slowly and very gradually. Every worsening I experienced—some temporary, some more long-lasting—happened because I pushed my limits. Stress and reactive tinnitus really do not mix well.

At one point, about ten months in, I started taking Clonazepam when I was feeling really bad and could not sleep. That is when I stopped being constantly stressed. Once that happened, I began sleeping well again, and that is when I started seeing improvement. It took over a year to reach that point. I developed tinnitus in February last year, and it started to stabilize a bit around April this year.

I began exposing myself to sound in May by wearing my earmuffs loosely, not fully covering my ears. I still cannot comfortably have a long conversation without my tinnitus or hyperacusis spiking, but after two months of gradual exposure, I can now manage short conversations. I can also listen to running water, toilet flushing, cars passing outside, and short videos on my phone again. Even my spikes are shorter now.

So, my message to you is this: first, get help to manage your stress symptoms, because stress really makes everything worse. Whether you see a psychiatrist for medication or a therapist for counseling, it does not matter, as long as you find something that works for you. Also, work on improving your sleep. Getting good sleep is essential.

Then, identify your triggers and how your tinnitus reacts. Does it worsen for a few hours, for days, or only while exposed? Are there moments when you are exposed to a trigger and it does not get worse? If so, what was different? Were you less stressed? Did you sleep better?

After doing all of that, try to gradually expose yourself to the triggering sounds. It will take time. You will have setbacks. But if you follow an approach that feels right to you, things should eventually improve.

 

[Jupiterman]

I don't think you have a psychological problem, you have a severe tinnitus problem. You have physical damage in your ear, which has caused hearing loss and consequently tinnitus. You are a severe case because your tinnitus easily (potentially permanently) worsens from normal noise exposure and is also reactive.

There really isn't much help anyone can offer. The cells in the inner ear do not heal (well), if at all.

Yes, you will receive the classic opposing advice:

1. Expose and try to desensitise, to reduce reactivity.

OR

2. Protect for a long while to give the ears a rest, prevent the condition from worsening, and allow for healing (if there is any chance of that) to occur.

You seem to have already figured out the insane truth of your situation; exposure to sound and you get worse, so remaining at home, where you are in control of the sound, is the only way to guarantee your condition does not worsen. Don't expect others to accept, understand or be supportive of this, even the medical professionals. They will classify you as having an "overreaction to your tinnitus" and therefore that your problem is more psychological.

The truth of the matter is your condition persistently CHANGES/worsens, and this makes it almost impossible to habituate to your tinnitus.

Unfortunately, no one on the planet (unless in your situation) is likely to understand the above statement.

If you see an ENT, audiologist, or doctor, they are almost certainly going to advise you "to be exposed to normal noises and live your life as if you don't have tinnitus." Do bear in mind you are likely to be the single most serious case of tinnitus they will have experienced in their careers, and there is no prescribed treatment for severe reactive tinnitus differentiated from 'standard' stable monotonal tinnitus. All tinnitus cases are treated the same by the medical profession, regardless of the severity.

I advise you against any invasive diagnostic tests, such as a hearing test or MRI. These can potentially worsen your condition.

There is no advice anyone can give you to make this 'go away', but if you've realised that staying at home prevents worsening and this gives you some measure of relief, you may want to run with this for the foreseeable future and then perhaps reassess your situation again in 6 months' time.

One last piece of advice: Be mindful of advice from non-sufferers; they don't need to live with the consequences 24/7.

 

[MindOverMatter]

I don't think you have a psychological problem, you have a severe tinnitus problem. You have physical damage in your ear, which has caused hearing loss and consequently tinnitus. You are a severe case because your tinnitus easily (potentially permanently) worsens from normal noise exposure and is also reactive.

There really isn't much help anyone can offer. The cells in the inner ear do not heal (well), if at all.

Yes, you will receive the classic opposing advice:

1. Expose and try to desensitise, to reduce reactivity.

OR

2. Protect for a long while to give the ears a rest, prevent the condition from worsening, and allow for healing (if there is any chance of that) to occur.

You seem to have already figured out the insane truth of your situation; exposure to sound and you get worse, so remaining at home, where you are in control of the sound, is the only way to guarantee your condition does not worsen. Don't expect others to accept, understand or be supportive of this, even the medical professionals. They will classify you as having an "overreaction to your tinnitus" and therefore that your problem is more psychological.

The truth of the matter is your condition persistently CHANGES/worsens, and this makes it almost impossible to habituate to your tinnitus.

Unfortunately, no one on the planet (unless in your situation) is likely to understand the above statement.

If you see an ENT, audiologist, or doctor, they are almost certainly going to advise you "to be exposed to normal noises and live your life as if you don't have tinnitus." Do bear in mind you are likely to be the single most serious case of tinnitus they will have experienced in their careers, and there is no prescribed treatment for severe reactive tinnitus differentiated from 'standard' stable monotonal tinnitus. All tinnitus cases are treated the same by the medical profession, regardless of the severity.

I advise you against any invasive diagnostic tests, such as a hearing test or MRI. These can potentially worsen your condition.

There is no advice anyone can give you to make this 'go away', but if you've realised that staying at home prevents worsening and this gives you some measure of relief, you may want to run with this for the foreseeable future and then perhaps reassess your situation again in 6 months' time.

One last piece of advice: Be mindful of advice from non-sufferers; they don't need to live with the consequences 24/7.

You seem to give very black and white answers. One size does not fit everyone, and I disagree with a lot of what you are saying here.

Reading between the lines, it comes across as if you believe you are pretty much doomed with reactive tinnitus. In any case…

There is much more to tinnitus than just physical damage, and it is important not to downplay the fact that it is very much a brain disorder or neurological condition. There are numerous mechanisms at play here.

Being stuck in a fight-or-flight loop is real, and if you remain in that state for too long, it will affect your tinnitus in one way or another. Most people will become anxious, depressed, and spiral downward when their autonomic nervous system is completely out of balance. That certainly does not help when trying to come to terms with things and move forward—whether it is hyperacusis, reactive tinnitus, or any number of related conditions.

So, there is hope @helpmyears, but sacrifices have to be made—at least for now, and for you, at this point. The road ahead will not be linear when it comes to getting better, and there will be many setbacks. Just make sure to avoid the major ones, especially those that can be prevented by staying away from loud environments.