People with New/Mild Tinnitus: You Are NOT Doomed to Be Like the Severe Cases Here!

DISCLAIMER: NONE OF WHAT FOLLOWS IS WRITTEN FROM ANY SORT OF MEDICAL QUALIFICATION, OR EXPERIENCE WITH SEVERE TINNITUS, HYPERACUSIS OR NOXACUSIS. IT’S JUST AN OPINION FROM A FAIRLY NEW, MILD CASE.

A few people on here may recognise me, I posted a thread about my own condition a few months ago, and have since made a few profile posts and replies to other threads. I will not go into detail about my case (I already did in another thread) but I have mild multitonal, somatic tinnitus probably originating from repeated noise exposure, and spiked by a virus a few months ago. I am also autistic, and also have lifelong anxiety issues, that will readily manifest themselves into health anxiety should there be anything ‘wrong with my body’. To make matters worse, I am a very sensory person.

When my tinnitus got worse after the virus, and then undoubtedly as a result of the ensuing anxiety, I did what many do, jumped on the internet. Outside of this forum, I researched countless diseases and conditions that had tinnitus as a potential side effect. I unironically convinced myself I had a CSF leak at one point. It was not fun. I would only be properly worried about one particular disease for a few days, but then another one would always take its place. I’m sure many of you reading this had similar experiences when your tinnitus first hit.

This forum definitely didn’t cause any of that, as people here generally don’t fear monger about what diseases have caused their or other people’s ear issues, but it caused another problem for me. The fear of hyperacusis and noxacusis.

I will say first that I sympathise greatly with people suffering from genuinely severe cases of tinnitus, hyperacusis and noxacusis. Although I will not claim to have gone through experiences like this myself, I know, from this forum and other sites online, how all three of these horrendous conditions can ruin your life. And I understand that for people suffering the most from them, forums such as this are one of the only outlets that you have left. I’m not here to be one of those arseholes saying ‘it’s all in your head, just do some CBT or put some masking sounds on’. Having been to hell and back the last few months with my mild tinnitus, I can only imagine how horrible that must be to hear if you are a severe case.

But when you’re on the internet searching desperately for information and validation about your own case, while reading horror stories that can be on a Stephen King level, it can be very hard to remember that truly severe/catastrophic cases are the MINORITY. And I’m not even talking something like a 1 in 5 minority. Much less than that. I will not post any statistics about how rare true hyperacusis and noxacusis are, as I have seen several different figures from different sources. But they’re RARE rare. Of course, tinnitus on its own is a very common condition, and a fairly significant proportion of people who have it can hear it in many more settings than just a silent room. But people locked in a room for years, people who spike from every soft sound and can’t hear conversation over the tinnitus? Incredibly rare. But online, it won’t seem like that. Most people who write online about their experiences with tinnitus aren’t the milder cases who suffered for a few months, even a year or two, but then habituated. Even within true cases of hyperacusis, the people who are now much better (the majority of past cases) won’t write about it. When it comes to health problems, the internet can create an illusion that more severe cases of the condition are much more common or likely than they actually are, due to severe cases usually being the ones that take time out of their day to write about the condition. This illusion is particularly pronounced on talk forums like here, and to make matters worse, accounts of severe cases understandably will get much more interactions and replies, leading them to be more visible. But the majority of people reading these stories are probably people just like you! Of course, advice to prevent mild cases turning severe is a positive thing, but only to an extent.

I’m writing this because of what the internet has done to me around hyperacusis and noxacusis. Before visiting this forum and other sites, I had no idea what hyperacusis was, and also did not feel any sensitivity to sound, even after my tinnitus had properly spiked. But when I first visited this forum, I saw posts all around me of people‘s sensitivity spiking through double protection, messages about how they hadn’t left their room for months. For someone with health anxiety like me, this DID NOT end well.

Despite knowing that my day to day life did not contain harmful sounds and was not spiking my tinnitus, I became nervous around completely harmless (for people without hyperacusis) sounds. And there is no need to explain that anxiety around sounds WILL make them seem louder to me. A few weeks went by and I convinced myself I at least had a mild hyperacusis case. My ears would feel tense on a completely harmless bus journey. And if I ever felt ANY pain near my ears, I would convince myself that noxacusis was next. I truly believe that hyperacusis is one of the easiest conditions to convince yourself that you have, especially if you have significant anxiety problems. Try reading articles about brain tumours. You normally feel a headache afterwards right? I do, at least. And as I said, anxiety will make sounds seem sharper. Of course, this is different to true hyperacusis, as it’s not related to genuine damage to the ear, but for someone worried about having or developing it, it can cause a very similar effect. It goes without saying that it’s impossible to develop hyperacusis from fear of developing hyperacusis, but anxiety and conformation bias are both bitches.

TTTS is another one. This condition is also easy to convince yourself you have, considering everyone’s tensor tympani does occasionally react to sound. And once again, ANXIETY WILL MAKE THIS HAPPEN MORE. I would be in an already anxious state, feel my ear spasm to a fairly loud, sudden sound, and convince myself I was about to go down with the condition. And of course, TTTS unlike true hyperacusis is genuinely related to anxiety at least in part, so it’s CRITICAL in my opinion to get the anxiety down about it if you don’t already have it.

I won’t go into detail about what the anxiety about having these conditions did to me, but it wasn’t pretty. Of course, the whole experience for me was started by having tinnitus, but after a while the fear of having acusis (I’ll just use that umbrella term) was genuinely worse than the tinnitus itself.

What I’m saying with all this is, if you’re a new case of just tinnitus, no matter how bad it might seem to you right now, try your hardest to avoid the horror stories. You are almost certainly nowhere near as bad as them, and if you’re sensible and not horribly unlucky (I know the most sensible can sometimes be fucked over by just luck) the chances of you ending up like this are MINUTE. Obviously, if you’re here because you started experiencing genuine pain or sensitivity to sounds, or properly REACTIVE tinnitus, then it’s different. But if sound sensitivity is not currently an issue to you, keep it that way and don’t research it.

Of course, I’m not saying to be reckless with your ears. That’s what can cause true severe cases. But don’t lock yourself in a silent room either. And I know all too well how tinnitus when it’s new can often seem deafeningly loud, particularly in silent places. But it normally will not stay this way for long, as long as you’re fairly sensible and try your best to keep your anxiety down. I know that this can be much easier said than done, but the first part, in my opinion, is understanding that the chances of this genuinely altering your life in the long run are close to zero.

 

Be happy you are a new mild case.

Note you can be new and become severe quick. I started mild (also 01/2023), became moderate in 3-4 weeks, and severe in less than 2 months.

And I don't think it became bad because I "feared it". It's just my shit luck after entire life of good luck. It's going to kill me, pretty sure.

Good luck.

 

Well, thanks for not gaslighting severe people, we all appreciate it. If this works for you, great. It can definitely help a lot of mild/moderate people. You are right it is incredibly rare to have this ear stuff at true severe levels and most will never get there as long as they don’t keep damaging their ears. Myself, being one of the most horrific noxacusis cases, I don’t even tell people to avoid all noise.

I’m glad you are humble and can tell the difference between the levels of this. It’s important for people to think this way. It’s true a lot of people think we should behave and have this mindset you have and that it’s going to fix us, and that the severe cases are being too negative and that what works for mild cases should work for us and, if it doesn’t, it’s our fault. It’s true if somebody’s tinnitus is only heard in a quiet room or hyperacusis is mild sound discomfort, it can really cause panic and mess themselves up. For anyone else reading this, If you can mask your tinnitus, your tinnitus is not severe, and if you can leave your home, your hyperacusis is not severe. Of course people who have tinnitus that can be masked or hyperacusis or noxacusis that allows them to live a life can realistically convince themselves they are ok, mind over matter, sound therapy, positive thinking and they will literally feel better and come back and say it’s all in your head! Then for the severe people, no matter what they do, nothing changes the horrible lingering chronic ear pain or screeching tinnitus. I do believe brain techniques can help, especially if somebody’s hyperacusis and tinnitus is at a 4 and they get to a 2, they’re going to think they are cured. Somebody at a 10 who gets to a 9 feels no difference and they are still suffering.

I agree, if you have a mild case, avoid horror stories because it is really bad for your mental health. It’s important the mild cases know what can happen if they are stupid and continue damaging their ears. Most of the time those who developed worst cases in the world already had pre-existing moderate tinnitus, hyperacusis or noxacusis, they already had the damage, recovered a little and are living their lives years later. Then their ears get damaged again and this is when shit hits the fan. This happened to me. Spend a few nights reading the stories that you do not want to end up as, listen to their advice and move on. Avoid forums best you can and live your life. Avoid clubbing, loud music, shooting guns, fireworks, and sirens and 99 percent of people will not get worse.

Good advice. Good luck with your ears!

 

Mine was from noise in February, it didn’t get bothersome until March, and severe in April. It calmed down in May. Barring a miracle (or miraculous treatment breakthrough), I expect it to come and go for as long as I’m alive. Something I’ll die with but not from.