My Entire Tinnitus and Hyperacusis Story — From Hell to Paradise

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.

 

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.

 

@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?

 

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?

 

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.

 

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.

 

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?

 

Indeed. No indoor events.

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.

 

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?

 

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.

 

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).

 

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

 

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.

 

It used to spike permanently and immediately. Now it doesn't, not unless I really go over the limit.

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.

 

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.

 

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!

 

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.

 

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"?

 

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.

 

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.

 

I think you've got your wording wrong?

 

I have x.x

 

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.

 

Thank you for sharing, and I’m so glad that you are in a much better place now. It gives me a lot of hope as I’m sure it does for many of us.