How Does One Live with Catastrophic Tinnitus?

[kingsfan]

Once again, you're stating that it's a fact that tinnitus gets worse. You have no evidence other than your own experience. If it's inevitable that tinnitus gets worse, then most people's tinnitus wouldn't be mild.

I strongly believe that tinnitus has the potential to worsen over time, seeing how cumulative hearing damage is. There are probably a million different factors that come into play with this, though. I believe the majority of people's tinnitus will progress very slowly where. They can go years or even decades before enough cumulative damage occurs. There are an unlucky few whose damage is already hanging on by a thread and aren't as resilient.

I've seen many older Tinnitus Talk members resurface here occasionally, stating a certain event has increased their tinnitus. It may be inevitable, but the critical thing to focus on is longevity between each worsening. It's all just the nature of aging and age-related hearing loss (presbycusis), but perhaps if the hearing loss is slow and gradual enough, the brain won't register any new or increased tinnitus.

 

[Utdmad89]

I strongly believe that tinnitus has the potential to worsen over time, seeing how cumulative hearing damage is. There are probably a million different factors that come into play with this, though. I believe the majority of people's tinnitus will progress very slowly where. They can go years or even decades before enough cumulative damage occurs. There are an unlucky few whose damage is already hanging on by a thread and aren't as resilient.

I've seen many older Tinnitus Talk members resurface here occasionally, stating a certain event has increased their tinnitus. It may be inevitable, but the critical thing to focus on is longevity between each worsening. It's all just the nature of aging and age-related hearing loss (presbycusis), but perhaps if the hearing loss is slow and gradual enough, the brain won't register any new or increased tinnitus.

I never said it couldn't get worse. I noted that @RunningMan states it's a fact that everyone's tinnitus will get worse, which he has no evidence for. My mother's tinnitus hasn't in almost 30 years, and there are others I know who have had it since they were kids, and it hasn't worsened.

So, like most stuff on Tinnitus Talk, it's speculation, as no one has any proof either way.

I don't find it helpful that people are telling everyone that they will get worse when many people here already are barely hanging on with what they are suffering. I, for one, have almost done something serious, having all the health problems I'm experiencing, and I come on here for some hope, but I find the same people telling me I'll only worsen and that treatments like Dr. Shore's device won't work for most. It's exhausting.

 

[BlueMoon86]

My dad's tinnitus (in both ears) hasn't worsened in 40+ years. He got it in the Air Force running and fixing planes. He says one ear is easily covered by ambient noise; as long as there is another noise in the room, he doesn't hear it. He describes the other ear as a bug buzzing and bumping against a jar, which is way louder and more annoying, but it doesn't worsen when he listens to loud classical music or the TV up at 80% volume. He can read books in silence and sleep in silence. I can't. He has gone 40 years with no worsening; I have gone from moderate/severe to catastrophic in six months despite becoming a recluse whose environment has never gone above 50 dB.

 

[RunningMan]

I never said it couldn't get worse. I noted that @RunningMan states it's a fact that everyone's tinnitus will get worse, which he has no evidence for.

I actually never said that. It's important to read what I actually posted, not what you imagined I would post. Even in my post earlier in this thread, I said that some people will improve, and I said "almost" certainly there will be worsening over the long term. I'm specifically talking about the loudness of the tinnitus, not the response to it. I never said everyone will absolutely get worse in volume, but the most likely trend over the long term indicates that is the most likely development, even if it takes decades to be apparent. Studies show more older people have tinnitus, and if you talk to older people with tinnitus, ask them if it is worse than when they were younger. I always hear it's worse. That's no reason to give up hope.

@kingsfan is correct.

Some people with mild enough tinnitus may not recognize it worsening slowly (getting louder) over many years due to habituation, like I had when my tinnitus was mild. But it could still get worse for those who have not reached the severe stage. It's too bad we don't have an objective way to measure tinnitus loudness.

Regarding Susan Shore's device (the Auricle device), it worked for 65% of study participants, including the placebo effect, based on the study of a relatively small group of 30 participants included in that analysis. Hopefully, that holds true in the real world vs. what we saw with Lenire, and it will stop your tinnitus from worsening. So hold on and keep up the optimism.

 

[kingsfan]

I believe the majority of people's tinnitus will progress very slowly where. They can go years or even decades before enough cumulative damage occurs. There are an unlucky few whose damage is already hanging on by a thread and aren't as resilient.

I too had unchanged tinnitus for around 20 years.

I don't find it helpful that people are telling everyone that they will get worse when many people here already are barely hanging on with what they are suffering. I, for one, have almost done something serious, having all the health problems I'm experiencing, and I come on here for some hope, but I find the same people telling me I'll only worsen and that treatments like Dr. Shore's device won't work for most. It's exhausting.

It's a double-edged sword. A little warning might have saved me some grief in the beginning, but, yes, it would have also been extra anxiety-inducing at the same time. I get the Dr. Shore thing. I avoid the thread because I don't want to read the negativity.

 

[dd314]

It depends on how often it gets catastrophic.

I've had horrific 9/10 tinnitus plenty of times, but I've been blessed with a 4/10 baseline for the better part of the last couple of years. In essence, anything that is temporary is bearable when it acts up. It's the only mentality to take for such a condition.

Remember, tinnitus is just as much about fear as it is about noises. The fear of nonstop tinnitus is almost as bad as the tinnitus itself.

 

[J96]

I wonder the same thing. I have extremely reactive variable tinnitus that is driving me to the brink. I had an acoustic trauma in December, which marginally raised my tinnitus. It gave me minor dysacusis and moderate loudness hyperacusis. This was world-changing, but I could still shower, drive, and listen to low-medium volume digital audio. Sometimes, I needed 21 dB musician plugs, but it was getting better after around a month. That was until I played a song and reverted my equalizer settings to 'normal,' which meant elevated high frequencies to me. I instantly got noxacusis, and my loudness discomfort levels dropped 10-15 dB at the same moment. Within two weeks, my loudness discomfort levels were around 30 dB.

Since then, every single medication I put into my body has made my tinnitus worse. A single half dose of Prednisone gave me a new tinnitus tone in one ear that is still here six months later. I was put on a small course of Clonazepam (0.25-0.5 mg a day) for six days and did not taper as my doctor told me I didn't need to. My tinnitus spiked for a few days after, but nothing major. I tried some Gabapentin for the nerve pain, and it helped slightly. When I started getting facial pain after a setback, I increased from 900 to 1800 mg in nine days per my doctor's instructions. However, after a dental incident a few days into increasing the Gabapentin, I took 3 Advils, 3 Tylenols, and 0.25 mg Clonazepam, which I was told was safe to mix. I also had a small 5 mg Baclofen for some neck pain. The next day, after my exercise mat crashed to the floor (with foam earplugs in), my tinnitus spiked with a new tone. It went away after I took a nap but returned on the next noise exposure (anything above 70 dB, even with protection). Since that day, it has been unstable and spiking to sound.

To make things worse, I tried Valium instead of Clonazepam, and within four pills across a two-week period, I got reactive tinnitus from it. Two pills later, during the micro-taper, I got reactive tinnitus in the other ear. It's now been two months since then without any benzodiazepines, and my tinnitus is still worsening seemingly every day. I wake up with the same tone from Prednisone, and it is completely random after that. It is so reactive and unstable right now that it reacts to every single sound, and I will get new tones for the day while doing something simple like moving in bed. It is beyond horrific, and combined with extremely severe noxacusis and loudness hyperacusis; I don't know how to keep going.