My Entire Tinnitus and Hyperacusis Story — From Hell to Paradise

I agree here. What's made habituation hard for me after a worsening in February 22 is the instability rather than loudness. That added to the extreme sound reactive nature of the tinnitus, I've still not fully habituated. You are right about silence being unimportant though, although it would still be welcome.
Not to hijack @AnthonyMcDonald's thread, but @Nick47, do you find that your tinnitus fluctuates in volume and sound?

Is it the fear of worsening that is making it difficult to habituate?

Some days I can't hear my right ear outside, but other days I can hear it over literally everything. I would be okay with even this but the volume has definitely gone up since I got hyperacusis, so it has worsened significantly.
 
@Nick47, do you find that your tinnitus fluctuates in volume and sound?

Is it the fear of worsening that is making it difficult to habituate?

Some days I can't hear my right ear outside, but other days I can hear it over literally everything. I would be okay with even this but the volume has definitely gone up since I got hyperacusis, so it has worsened significantly.
The only thing that my tinnitus can't compete with is the power shower in the gym. The kettle boiling in the morning sends it ballistic. Baseline is 3-9/10 and varies by day and even by hour. No, I'm not worried at all about it worsening because I won't expose myself to loud venues. Nor will I be gaslit by MDs waffling crap about misophonia. Never covered my ears unless a loud ambulance went past, and then used my hands.

I took Gabapentin for a couple of days for back pain and it brought my tinnitus down considerably by about 30% and was very low waking up in the morning.

I wonder if reactive tinnitus is auditory nerve damage. Hyperacusis seems connected but not necessarily.
 
The only thing that my tinnitus can't compete with is the power shower in the gym. The kettle boiling in the morning sends it ballistic. Baseline is 3-9/10 and varies by day and even by hour. No, I'm not worried at all about it worsening because I won't expose myself to loud venues. Nor will I be gaslit by MDs waffling crap about misophonia. Never covered my ears unless a loud ambulance went past, and then used my hands.

I took Gabapentin for a couple of days for back pain and it brought my tinnitus down considerably by about 30% and was very low waking up in the morning.

I wonder if reactive tinnitus is auditory nerve damage. Hyperacusis seems connected but not necessarily.
Mine only became reactive after I got the hyperacusis.
 
The only thing that my tinnitus can't compete with is the power shower in the gym. The kettle boiling in the morning sends it ballistic. Baseline is 3-9/10 and varies by day and even by hour. No, I'm not worried at all about it worsening because I won't expose myself to loud venues. Nor will I be gaslit by MDs waffling crap about misophonia. Never covered my ears unless a loud ambulance went past, and then used my hands.

I took Gabapentin for a couple of days for back pain and it brought my tinnitus down considerably by about 30% and was very low waking up in the morning.

I wonder if reactive tinnitus is auditory nerve damage. Hyperacusis seems connected but not necessarily.
I needed to hear this. I got a significant tinnitus increase from withdrawing from Klonopin, and then the hyperacusis made the tinnitus insanely reactive.

Keep in mind I was on this drug for 4 years and then was put back on it a year later by an unknowledgeable/incompetent psychiatrist -- withdrawing usually does not cause this, but kindling can. I have literally experienced every auditory problem on Earth at this point.

I kept thinking back to these (most likely/definitely completely overexaggerated) stories of water permanently spiking tinnitus and I literally convinced myself that my right ear was getting worse daily. What I've concluded is that it has a fairly low baseline but every time I get ear pain and I aggravate it by doing stuff, it gets extremely loud, sometimes by tenfold.

Understanding what's going on has helped but I am still avoiding moderately loud places until the hyperacusis hopefully eventually gets better.

Appreciate all of your research posts.
 
Hi @AnthonyMcDonald, I had another question. Aside from completely avoiding loud places, I am also wondering if I should stop using my ANC headphones. Do you use headphones of any kind, or is this not possible for you at the moment?
 
Hi @AnthonyMcDonald, I had another question. Aside from completely avoiding loud places, I am also wondering if I should stop using my ANC headphones. Do you use headphones of any kind, or is this not possible for you at the moment?
No headphones ever. I only risk high quality speakers at a very low volume.
@AnthonyMcDonald, thank you for sharing your successes.

You mentioned playing the guitar. Do you play in any bands? Have you been able to resume any concert-going or music-making that you were doing before you got hyperacusis?
No concerts, definitely not. Not even gonna risk it. I've been to some events, standing far away, in hearing protection. Yeah, I continue singing and recording some songs.
 
You are right about silence being unimportant though, although it would still be welcome.
Agreed. Silence is not important to me anymore. And while the volume can be troubling, it's the type of tinnitus sounds that make it the most difficult for me, especially those that also include sensations.
 
No headphones ever. I only risk high quality speakers at a very low volume.

No concerts, definitely not. Not even gonna risk it. I've been to some events, standing far away, in hearing protection. Yeah, I continue singing and recording some songs.
When you say events, do you mean outdoor type festivals where you can stand away at the back?

Now that you have managed the flight, is it something you would do again?
 
What exactly do you mean?
I mean you have managed to take one flight, now that you have gone through that experience, is it something you would do again and take another flight in the future?

I am trying to return to the throws of normal as much as possible, I would love to take a flight but have yet to take that leap. My tinnitus is sound reactive and very loud (no sound can come close to masking it) - similar to yours - so I was wondering if it's an experience that put you off or you would do it again.
 
I mean you have managed to take one flight, now that you have gone through that experience, is it something you would do again and take another flight in the future?
It's funny how we all look to one another to see if it's possible to recoup our lives. I do the exact same and I use @AnthonyMcDonald as an example of this as his tinnitus is very severe and seems similar to my own.

I know from discussions I've had with him previously that he's had multiple flights since and most recently to Turkey. Which gives me hope I can still carry on with my annual trips to the United States.

Apologies for the question over question, but I was just wondering how your tinnitus reacts when you say it's sound reactive, and to digital audio specifically? Is it an instant reaction, do you gain more tones etc?
 
I mean you have managed to take one flight, now that you have gone through that experience, is it something you would do again and take another flight in the future?

I am trying to return to the throws of normal as much as possible, I would love to take a flight but have yet to take that leap. My tinnitus is sound reactive and very loud (no sound can come close to masking it) - similar to yours - so I was wondering if it's an experience that put you off or you would do it again.
A lot of us with varying degrees of tinnitus have flown and would/will do it again.

Commercial jets vary so greatly on their in-cabin volume level. Add onto that the variance that different seat locations on each plane can also increase or decrease the engine noise inside the cabin.

Perhaps those of us who do fly, should start keeping points of data in database for all to share.
 
It's funny how we all look to one another to see if it's possible to recoup our lives. I do the exact same and I use @AnthonyMcDonald as an example of this as his tinnitus is very severe and seems similar to my own.

I know from discussions I've had with him previously that he's had multiple flights since and most recently to Turkey. Which gives me hope I can still carry on with my annual trips to the United States.

Apologies for the question over question, but I was just wondering how your tinnitus reacts when you say it's sound reactive, and to digital audio specifically? Is it an instant reaction, do you gain more tones etc?
Yes I'm the same and would love to start flying again too - especially to the US. I am contemplating a flight to Europe to test it before jumping on a 7-10 hour flight.

It's an instant reaction and can last anywhere from a few hours to a few days.
A lot of us with varying degrees of tinnitus have flown and would/will do it again.

Commercial jets vary so greatly on their in-cabin volume level. Add onto that the variance that different seat locations on each plane can also increase or decrease the engine noise inside the cabin.

Perhaps those of us who do fly, should start keeping points of data in database for all to share.
A database would be so useful - especially for cabin noise and also pressure. I've had tinnitus from birth and flew four times a year without any earplugs or issue. Things have changed now though. It's severe and reactive. If I do fly, it will hopefully be in Business or First, so I am hoping this puts me a little further away from the engine noise (in theory).
 
Yes I'm the same and would love to start flying again too - especially to the US. I am contemplating a flight to Europe to test it before jumping on a 7-10 hour flight.

It's an instant reaction and can last anywhere from a few hours to a few days.

A database would be so useful - especially for cabin noise and also pressure. I've had tinnitus from birth and flew four times a year without any earplugs or issue. Things have changed now though. It's severe and reactive. If I do fly, it will hopefully be in Business or First, so I am hoping this puts me a little further away from the engine noise (in theory).
I've only flown one trip so far, but had 5 separate flights on 5 different commercial airliners all with various seating positions.

On planes with the engines attached to the front wings, I noticed the following:
  • During takeoff, sitting behind the engine was loudest
  • During landing, sitting in front of the engine was loudest
  • Sitting directly on the engine was kind of the happy median (medium?)
I only sat in regular Economy and upgraded Economy (Comfort+), so I don't know what it's like further up in Business class or First Class.

All the flights were vastly different in loudness at cruising altitude. A couple were a little uncomfortable and the others were quite comfortable. On one flight I walked up and down from the back of the plane to First Class while checking decibel levels (it was kind of embarrassing), and it appeared to only be 1 or 2 decibels quieter at the front of the plane.

I think the biggest issue is figuring out which planes, and seats on those planes, are the best during takeoff and landing.
 
Apologies for the question over question, but I was just wondering how your tinnitus reacts when you say it's sound reactive, and to digital audio specifically? Is it an instant reaction, do you gain more tones etc?
It used to spike permanently and immediately. Now it doesn't, not unless I really go over the limit.
I mean you have managed to take one flight, now that you have gone through that experience, is it something you would do again and take another flight in the future?
I've gone on at least 10 flights so far, plugged with Xtreme Hearoes and Peltor X5A with HY80 gel cups. Haven't spiked from a single one.
 
No concerts, definitely not. Not even gonna risk it. I've been to some events, standing far away, in hearing protection. Yeah, I continue singing and recording some songs.
I play in a little acoustic trio and do occasional recording. I was dragged along to an open-air festival recently but couldn't believe how loud the bass was even from the other end of the site. I miss concerts hugely, but it's about finding other positive things to occupy your time, isn't it? I'm getting more into exercise and cycling for example.
 
Great to see you are planning ahead @DeanD - hope you're getting stronger with the swallowing issues as well. Jump on a plane to Ireland - if you wanted a test run :)
Thanks - still tough, still going through tests, but managing 2500-3000 calories a day and have put on a pound lol. Ireland is a good shout, I have never visited, and it's only an hour's flight!

Hope you're doing well too, and hope the running is going well!
 
Reading this is genuinely inspiring and gives me hope. I got driven to the point of suicidal thoughts just by an increase in the tinnitus noise, I didn't even get pain hyperacusis or anything and while I hear it 24/7 it doesn't drown out voices.

I ended up on anti-anxiety meds which have basically saved my life but seeing that someone can come back from a far worse case than mine is something I really needed to hear. I'm very happy for you, we're total strangers but I wanted to say this regardless :)
One thing I've seen a few times on Tinnitus Talk is that newcomers should know is that once people got their anxiety under control, they felt a lot better. It's often far more about the anxiety than the symptoms. For me it was the same.

As soon as I focused on other things and had a Valium or a drink, I saw that I was actually fine once the anxiety was gone and the OCD focus was redirected. The more this happened, the more I stopped noticing things and realised things can be ok.

I think it's important for the newcomers to know that the awful stress and anxiety isn't the same as the tinnitus/hyperacusis symptom.
 
I think it's important for the newcomers to know that the awful stress and anxiety isn't the same as the tinnitus/hyperacusis symptom.
Makes no sense whatsoever.

I don't know how many of these 'obscure' writings I've read from the habituated.

Why don't they just say "I've habituated"?
 
One thing I've seen a few times on Tinnitus Talk is that newcomers should know is that once people got their anxiety under control, they felt a lot better. It's often far more about the anxiety than the symptoms. For me it was the same.

As soon as I focused on other things and had a Valium or a drink, I saw that I was actually fine once the anxiety was gone and the OCD focus was redirected. The more this happened, the more I stopped noticing things and realised things can be ok.

I think it's important for the newcomers to know that the awful stress and anxiety isn't the same as the tinnitus/hyperacusis symptom.
And don't forget TTTS, noxacusis, reactive tinnitus, insomnia, and depression. After over 20 years of tinnitus, I've found it's just gotten worse over the last 18 months, even within the last month! The anxiety doesn't get better as things worsen - they're all linked. The sympathetic nervous system does its thing regardless of what I consciously think. These afflictions just can't be ignored. I would love to have a mild condition that a pill or drink would take care of. The anti-anxiety meds and antidepressants I tried didn't appear to make any noticeable difference for me.
 
There is always this misunderstanding/ignorance the mild-to-moderate sufferers have of the severe sufferers.

However, there is never a misunderstanding of the mild-to-moderate sufferers FROM the severe cases. Why? Because the severe sufferers used to be there themselves.

Try explaining the above to a mild-to-moderate sufferer?

Complete waste of time...
 
I sincerely hope my original posts on the previous page weren't interpreted to suggest that severe and catastrophic tinnitus is a different beast to mild/moderate.

In my own thread I made a disclaimer about this to make it clear I acknowledge the difference and appreciate it, sorry if it came across to the contrary. :(
 
And don't forget TTTS, noxacusis, reactive tinnitus, insomnia, and depression. After over 20 years of tinnitus, I've found it's just gotten worse over the last 18 months, even within the last month! The anxiety doesn't get better as things worsen - they're all linked. The sympathetic nervous system does its thing regardless of what I consciously think. These afflictions just can't be ignored. I would love to have a mild condition that a pill or drink would take care of. The anti-anxiety meds and antidepressants I tried didn't appear to make any noticeable difference for me.
Sorry, I was referring to many mild case newcomers. After all this is what the thread was kind of about. I completely understand your situation and maybe I'll soon be there too.
 
Hey everyone. I was asked by a few members on this forum to write a detailed, structured success story (if you can call it that) to show how it is absolutely possible to get out of the worst hell imaginable and have a life again. I'm going to break it down into different months, as accurately as I remember:

It Begins

July 12, 2021. I remember this day as it were yesterday. I was on a leisure trip around the US, visiting as many friends as possible. Throughout my entire life, I always had mild tinnitus (quiet room, single tone), most likely from very serious ear infections I had in my childhood. I always thought some noises were "too loud", whch brings me to believe that I also had a mild form of loudness hyperacusis. On my trip, however, I spent a large amount of time listening to music way too loud in earbuds. And on that day, the 12th of July, I had my first "appearance" of serious tinnitus and hyperacusis. Of course, I went through the whole shabam - going to doctors, no help from them of course, insane anxiety, etc. I would not have called myself very severe at that time, because I could still take showers and walk around the city in ear plugs, but for me my life was over - constant, intrusive (at that time) tinnitus, sleep issues, etc. Over time I came to accept my situation, and life kept going, albeit at a much less active degree (no concerts, no bars, etc).

My Worsening

September 24, 2021. My birthday. A couple days ago, I had a haircut with clippers used very close to my ears. It sent my tinnitus and hyperacusis into overdrive. Over the course of the next few weeks I was worsening daily. I could not do anything, I couldn't wash he dishes, I couldn't go outside without double protection, etc. This spike is what sent everything into overdrive. From this day forth, I was worsening every day, and my tinnitus was getting more and more tones, by the day, by the hour. After 2-3 weeks, my hyperacusis got so bad that I had to start wearing hearing protection 24/7, and my tinnitus tones changed on a minute-to-minute basis. Every single noise was too loud, Lego falling in the floor sounded like bombs, swallowing water would spike me permanently. I couldn't eat food without spiking, I couldn't drink. My life became so limited and full of constant torture, that all I thought about was death. I didn't want to exist anymore, all I wanted to do was sleep to get relief from the suffering in my dreams.

Over the course of the next few months, the worsening continued. My sound tolerance kept falling. My girlfriend broke up with me, my family ostracized me (they did come around, though, thanks to the help of some amazing forum members getting in contact with them - thank you). I was completely alone, in real life at least. The only support I had was from fellow sufferers, and these wonderful people - I thank from the bottom of my heart.

All I did, all day, every day, was research tinnitus and hyperacusis, talk about tinnitus with my peers. I barely ate anything, and eventually I took a loan to hire a friend/caretaker to cook for me, flush the toilet, etc. I also bought a sound booth to sit inside all day while trying to distract myself from the immense torture. Constantly changing and worsening tinnitus and hyperacusis is a beast that, fortunately, not many have to deal with. Having fellow sufferers gaslight severe sufferers like me was heartbreaking, and I was in such a pit of anger and hate that I shit down any positivity coming my way. I still don't think toxic positivity is a good thing, especially for people as bad as I was, though. Also, I would like to mention - near the beginning of my worsening, I briefly would experience stabbing pain in my ears. Also, I would feel deep burning pain in my ears, and occasional fullness. This did not last for long, and I wouldn't say that I had truly experience noxacusis. It went away rather quickly. The horrendous loudness hyperacusis remained, though.

2022, the Worst Year of My Life

I honestly do not have much to say about this year. The first part, especially, was horrendous. Sitting/lying in my earmuffs in my sound booth all day, every day, only opening it to pour water down my throat without swallowing and swallowing as softly as possible overcooked, soft porridge while reading research papers about tinnitus, while jumping at every sound my neighbors made pretty much sums up the entire first part of this year.

In February, my family forcefully had me commited to a psych ward. When this happened, I was assaulted by way more loud noise than I could handle. A strange thing happened, though. My hyperacusis briefly improved to the point when I could talk again and have conversations with people. I do not know why this happened, and I cannot explain it. I do not recommend anyone to expose themselves to loud noise. I started worsening again soon after this.

Closer to the summer, my father eventually decided to help me, and purchased an apartment in a very quiet part of the city. I could finally stay in relative silence without wearing my ear muffs. And this is when my stabilization started.

Stability

After 3-4 months of eating delivered food and sitting all day in my quiet apartment, I started noticing that some noises didn't permanently spike me anymore. I could do more things without hearing protection, like touching paper bags, opening containers, etc. I still couldn't talk very much, but I decided to start pushing myself a little bit. I would try something, worsen, retreat to total silence, try again, etc. I do not know if this was the reason for my improved stability, maybe it was a coincidence. Again, I don't recommend anyone to leave their comfort zone if they can help it. I would do something like go outside at night without hearing protection, try cooking, worsen, repeat. The worsenings started slowing down, my tinnitus and hyperacusis were more stable, and by the middle of the summer I could do things like leave the house, go to the supermarket in my earmuffs, and have small get-togethers with my friends.

By the end of the summer, I could ride in taxis in double protection without worsening too much, and I went to a resort with my friends, where I sang, played the guitar, etc. I worsened pretty badly after this, but I managed to stabilize.


My Time Back Home in the US, Leading Up to Now

I had to move away from Russia for obvious reasons, and under benzos the flight didn't worsen me too much. The next 8-9 months were cycles of me worsening, stabilizing, worsening less and less. I lived with my grandfather in an absolutely silent house in the mountains.

Now, I can travel anywhere I want, by plane, train, cars. I can walk comfortably next to freeways with earplugs. I wear earmuffs only for long car rides, and flights (I can handle then only in ear plugs, and even with no protection, but I prefer not to. Better safe than sorry).

I have traveled to 3 different countries these past few months, and I plan on travelling to many more this summer. I haven't spiked once during my trips, and I can do things like visit bars with hearing protection and go to music festivals, standing all the way in the back with double protection. My improved stability has given my life back to me.

If you have any questions, feel free to comment. I wrote this whole story from my phone, so I may have missed some details.

P. S. I'm not sure if my tinnitus has started decreasing, or if it is insane habituation, but I cannot hear it outside anymore.
Are you now able to go to bars or venues that play music (live or background), with earplugs of course - or is this something you still have to avoid?
 
Are you now able to go to bars or venues that play music (live or background), with earplugs of course - or is this something you still have to avoid?
I can but I don't. I've been to 2 venues so far, in the very back, outside, and in protection, didn't spike. I won't risk it again, though. I never really liked places like that, so I'm not missing out on much.
 

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