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Alan1967

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Posts: 9
Reply with quote  #1 
Hi

I posted a little while ago about how I've been experiencing sensitivity to certain noises like paper/plastic bags rustling and how my Tinnitus which is severe seems to react to it. I know there is debate if 'reactive Tinnitus' is hyperacusis or not.

For the past 6 weeks I'd been using that new device Lenire by Neuromod. It has a very heavy white noise hiss on it and during my time of using it my reactivity definitely increased. Two weeks ago I was exposed to a house alarm panel sounding, the sound emitter was muffled and I shoved on a set of ear defenders within seconds. Since then I used my Lenire a few times and a couple of times I woke up in the night, with my T screaming at me.

It's been like this for nearly 2 weeks. Same higher pitch tone plus bells. My reactivity is up. What I've noticed is my T can start off mild in the morning and get progressively worse and as that happens so does my reactivity. Or I can wake up with bad T and bad reactivity.

Both go hand in hand together. I normally get a couple of days Relief, but that hasn't happened in the past two weeks. Is this a relapse? If my T is now at a new level and permanent does that mean my H will remain the same?

Has anyone had 'reactive Tinnitus'? Has it got better?
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rodmccain

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Posts: 219
Reply with quote  #2 
Hello,  Regarding the reactive T and white noise generators, it did the same thing to me. I STOPPED using them.

Wishing you the best,
Kathy M
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Alan1967

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Reply with quote  #3 
So how did you deal with reactive tinnitus can I ask please?
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rodmccain

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Reply with quote  #4 
Hi Alan,

Every one is different, and I don't want to be the bearer of gloom.  I have never recovered sufficiently to get back to a normal life.  I still have the reactive T, not quite as severely.  I have chronic T with multiple signals, which at timescan get very intrusive.  Sound does seem to make it louder.  

My issues were from an enclosed MRI.  I had a severe acoustic injury.  Most of the time, an  injury like this does not heal sufficiently.  I have been to many doctors and they can do nothing for me, so they say.  The other component to this is and a very important one, it seems that my hearing has been permanently altered since this event.  I actually hear normal environmental sound much louder than it really sounds.  Incredible I know, but true!

I do not know how this happened to you, or what other symptoms you may have, or how long you have suffered with this. All of this factors in to how long it will take to recover. 

Sorry I can not really be more positive. As I have said, everyone differs.  If you can get out and about, I would say you are way ahead of the game.  Keep yourself busy, and active. This will put the T in the background,  and will help you habituate. It just may fade or go away completely with time !

All the best,
Kathy M 
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Alan1967

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Posts: 9
Reply with quote  #5 
Hi Kathy

Thank you for your kind response.

My reactivity just came on by itself, by and large. I've had T since 1997 which was invasive, but stable. Then in October last year I played an acoustic piano one night and woke up the next day with my T skyrocketing.

A few months later I started noticing shower water was loud and from there things have gradually got worse. Paper bags rustling, certain material being rubbed etc. Theres no pain but my T seems to feel louder on hearing these sounds and stops when the sounds stop. I'm not sure it does actually increase, it just seems like it increases. I guess this is the Hyperacusis element.

How did yours improve, even if it was just slightly?

I also find that shower water in particular sets my T off which intensifies through the day.
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rodmccain

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Reply with quote  #6 
Hi Alan,

 I have had this debilitating T with loudness H for 7 yrs now.  I would give anything if I could get enough of my hearing back to get out and about as I used to.  I was a very active person.  I believe I would be able to cope with the T a lot better as well. 

A well known ear surgeon in Houston told me that this is not true that protecting your ears from sound will make it worse, or prevent this condition from improving.  He told me that if you feel you need hearing protection...USE IT. 

I tried for almost three years not to protect my ears...nothing.  My hearing has seen a bit of improvement,  T leveled out and the last year started getting worse again.  You do seem to have a few of the symptoms I have.  Regular sound worsens T.  Luckily you are not debilitated.  You can work and pretty much live a normal life.  This is good!  I would suggest that you only use protection when you feel you need it, especially if you have tried not too, and your T worsens, with no improvement in your hearing.  If you must be around something very loud, which I would recommend NOT to do, wear hearing protection,  by all means!

So, in answer to your question, time and very low soft music.  I have a long way to go though.

Take care,
Kathy M 


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Rob

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Posts: 38
Reply with quote  #7 

Alan, tinnitus and hyperacusis are two different auditory challenges.  Based on what you have explained, it isn’t clear whether you have hyperacusis.  A good way to help your doctors make that determination is to have an audiologist administer a frequency-specific loudness discomfort level test to help determine your tolerance of sound.   

When you describe your tinnitus as growing louder when you are exposed to specific noises, you are describing your own response to tinnitus rather than tinnitus’s response to sound.  Tinnitus doesn’t have agency; it can’t react to anything.  We do that.  When folks are very distressed by tinnitus, we tend to monitor it as we would any threat and we look for patterns to try to understand and alleviate the threat.  I would follow your intuition that the tinnitus signal may not really increase when your auditory system is exposed to certain sounds; rather, it just seems like it does.  This isn’t a feature of hyperacusis.  It is a very typical and understandable response to being distressed by tinnitus.   

When I was distressed by tinnitus, I frequently noticed tinnitus seemed to increase in volume when I was exposed to all sorts of comparatively loud sound.  For example, I could hear my tinnitus when I was driving 70 mph on the highway with the car windows open.  The reason I could hear my tinnitus wasn’t because it had grown louder when exposed to highway sounds.  It appeared to grow louder because I was monitoring it.  The auditory system is very good at keeping tabs on sounds that are important to us.  That is why we can hear our name being called in a crowded restaurant or bar or wake up to the sound of a crying baby in the next room but stay asleep during a thunderstorm. 

The sorts of things you describe went away for me completely when tinnitus was no longer a threat.  There are several effective ways to help manage tinnitus so that it is no longer a threat over time.  My suggestion is you spend some time looking into a management strategy that is helpful to you.

Rob
              

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Alan1967

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Posts: 9
Reply with quote  #8 
Thank you Rob for a very eloquent reply. It's strange to say the least. I was watching random TikTok videos the other day on my mobile and if a particular voice or tune seemed to elevate my T, the moment I tapped the screen and paused it, it stops.

But...if you do it rapidly, the T does it rapidly too! It's almost as if the T hasnt changed by the two sounds combined seem to register somewhere else in your brain as being louder (I.e reactive)

What I have definately noticed is shower water. If I have woken up and my T is quiet, I get in the shower, come out and it starts off, progressively getting worse.

However if I avoid a shower and just have a rub down it stays quiet. I noticed this over many weeks.

That all said, my T is now worse, thanks to this new device Lenire I personally believe.
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Rob

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Posts: 38
Reply with quote  #9 
Alan, try not to be the biographer of your tinnitus by tracking its behavior. 

I suggest you stop using the Lenire device since it isn't helping you and look into another strategy that may be better suited to helping you to manage tinnitus. 

A book written by Jane Henry and Peter Wilson called Tinnitus: A Self-Management Strategy for the Ringing In Your Ears may be helpful, particularly chapters 4 and 5.

https://www.amazon.com/Tinnitus-Self-Management-Guide-Ringing-Your/dp/0205315372

Rob

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Alan1967

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Posts: 9
Reply with quote  #10 
It's very difficult Rob, my T is high pitched and it's like having my brain drilled with a dentist drill.

I have had the music changed on my Lenire device. Now it's simply 6 tones like a telephone key pad being pressed. I have that book, but it's very difficult to think straight with T like mine and to maintain mental resolve.
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Rob

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Posts: 38
Reply with quote  #11 
Several things you have said so far about your tinnitus are examples of what the book's authors would call distorted thinking.  For example, you compared your tinnitus to a dentist's drill.  Tinnitus isn't like a dentist's drill and the sound made by tinnitus isn't remotely as loud as the sound made by a dentist's drill.  High-pitched tinnitus is the most common form of tinnitus.  You said it is very difficult to think clearly with your kind of tinnitus.  I would argue that while you are very distressed by tinnitus, the type of tinnitus you have isn't unique and turning the corner on high-pitched tinnitus, even when it is loud and intrusive, is achievable.  I'd also like to suggest that the management strategy proposed by the authors of the book I recommended doesn't involve mental resolve.  It involves learning how to identify cognitive distortions, learning how to see the connection between distorted thinking and the sort of emotional distress you experience, and learning how to replace distorted thinking with more realistic thinking.  Earlier you asked what steps folks took to improve.  For me, it was realizing the impact of my catastrophic thinking about tinnitus.  I began to understand my thinking about tinnitus had a lot to do with my distress.  Over time, my tinnitus has remained the same but my response to tinnitus has shifted.  I no longer experience tinnitus-related distress and often go for days without being aware of tinnitus. 

Rob
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rodmccain

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Posts: 219
Reply with quote  #12 
Hi Alan,

May I ask you please.......  It is evident to me that your T is causing you extreme distress.  I do realize how severe T can be.  Some T signals are much more easily habituated than others.  Correct me if I am wrong, but I thought you posted that you have had T since 1997, and it was stabilized?    This tells me that you can, and have habituated to the sound/sounds.  What specifically happened to make this intolerable?  Is it the sound of T only, or is there another symptom making the T sounds/sound much more difficult to cope with?   How is your hearing PERCEPTION?   I am not speaking of phonophobia,  or misophonia, but the way in which you are ACTUALLY hearing the environment, or certain sounds.  There is a difference.  

I am certainly not an expert, and  I do not have the answers, and will not pretend to have them.  Every doctor or audiologist I have seen in the past seven years, is basically clueless, with MY conditions.   I do however know what I live and endure with on a daily basis.  It is very real, and the root cause of the misery is NOT emotional. 

Kathy Mc 



   
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