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Alan1967

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Posts: 4
Reply with quote  #1 
Hi

First Time Poster, hoping to find help.

Long story short. I've had Tinnitus since 1997 caused by ear infection. In October 2018 I suffered a noise trauma and my tinnitus got significantly worse.

In the past 4 to 5 weeks I started to notice that certain sounds seemed sharper. I don't experience any pain, fullness, sound distortion etc. Sometimes some sounds just cut through me.

Moving forward to today I've noticed that if I wake up and my tinnitus is faint, it will increase after I've been in the shower, then if I'm at work, I drive to work and sit in an open plan office, which can be noisy. By 2pm my tinnitus is screaming. Then later at home noises like plastic bags being crumpled send my tinnitus crazy and stop when the noise stops.

On days when I stay at home and wake up and my tinnitus is faint, if I just slob for the day, my tinnitus can remain low all day. Strangely, when I wake up the next day my tinnitus can be raging again.

I admit when my tinnitus got worse in October, I used hearing protection occasionally and avoided moderate sounds, even wearing ear plugs in meetings.

I've read reactive Tinnitus is a subset of hyperacusis. Others argue it isn't. The advice I've read so far is dont over protect in normal sound environments and use sound enrichment, but, in my case, some some are triggering the reactive tinnitus and making it worse.

Has anyone got reactive Tinnitus? What did you do for it? Did it go away and return to more 'steady state' tinnitus? How do I treat this?

I want to protect my ears to stop the tinnitus triggering but I don't want to decrease my tolerance to sound so I'm very confused as to what I should do for the best?

Thank you.
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EDogg

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Reply with quote  #2 
Hi Alan,

If you haven’t already, you may want to consider getting an evaluation by a clinician with knowledge of tinnitus and hyperacusis. See link at top for thread for TRT trained clinicians to find one near you. It’s possible that you may have a component of hyperacusis in addition to your tinnitus. They will be able to properly evaluate for that and provide you direction.

I also have, what you describe, as reactive tinnitus. You will see that there is much debate about this term in the forums and whether it deserves distinction from other forms of tinnitus. I am not sure anyone knows the true answer. From my personal experience, the reactive tinnitus, or sound-reactive tinnitus, is tied to the hip with my hyperacusis. It sounds different than the static tone tinnitus that many describe. Mine fluctuates in tone constantly and overlays over external sounds. It’s severity and intrusiveness is directly proportional to the severity of my hyperacusis. It, at times, completely goes away when I have mild improvements in hyperacusis. So, my theory, is that they are in fact related, in my situation, and it’s possible yours are too. The strategy I am focusing on is treating the hyperacusis with sound desensitization and not caring about the tinnitus whatsoever. It can be really challenging to do, but it seems like the proper way forward for me. Try to avoid over protecting your ears from sound, as much as reasonably possible, as it re-enforces the fear-avoidance behavior that can be a downward spiral.

Best,
EDogg
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Rob

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Posts: 32
Reply with quote  #3 

Alan, you describe some sounds as being sharper.  Do they sound louder?

Everything you described about your tinnitus is typical, garden-variety tinnitus.  I would try to catch yourself when you start looking for patterns.  (When I go to work, tinnitus does x.  When I stay home tinnitus does y.  When I wake up, tinnitus does z.)  Paying attention to the behavior of tinnitus is a good way to remain focused on it.    

Avoid wearing hearing protection around normal sound.  Stop avoiding exposure to moderate sound.  Moderate sound is good for your auditory system and it won’t make your tinnitus worse.    

The term “reactive tinnitus” is an Internet construct, invented on the Internet by folks who were trying to describe the behavior of their tinnitus.  It isn’t a subset of hyperacusis.  It isn’t even a subset of tinnitus.  

Most folks with tinnitus discover their tinnitus “reacts” to something – sound, wine, salt, medicine, a nap, etc.  Again, this is normal tinnitus behavior.  Where it can become a problem is when we believe there is something special about it that makes our tinnitus more difficult to manage.  It is a short step from believing this to focusing more on tinnitus and becoming more impacted by it. 

****

EDogg –

Tinnitus that fluctuates in tone and seems to overlay external sound is normal tinnitus behavior.  Tinnitus doesn’t actually increase in volume when we are exposed to external sound.  When tinnitus is a threat or of some importance to us, our auditory system monitors it.  That is why we can hear it even in the presence of external sound.  (This is also why we can hear our name being called in a loud room.)  I can hear my tinnitus driving 65 mph on the highway with the car windows open.  This isn’t unusual.        

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EDogg

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Reply with quote  #4 
Hi Rob,

I don’t have any intention of rehashing the long debates about this and, as you know, I have tremendous respect for you and your contributions to the community. You may very well be right that the impression of tinnitus reacting and being modulated by external sounds is merely a consequence of our auditory system latching on and focusing to it. It’s a very difficult and experiential sensation to evaluate in an objective manner. It’s clear in my situation that there is some proportional relationship between hyperacusis and tinnitus. As with hyperacusis, I also believe there are multiple pathways that lead to the symptom of tinnitus. We just don’t know enough at this point to subclassify. And, more importantly, if this sub classification has any relevance from a treatment standpoint. Either way, focusing on it gives it importance and brings it out into the foreground, when it belongs in the background, as a meaningless benign noise.

Best,
EDogg
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Alan1967

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Reply with quote  #5 
EDogg & Rob .....thank you very much for your kind replies.

I'm aware of the debate about reactive tinnitus and also the theory that everyone's tinnitus reacts to something. My brother has Tinnitus as well and his reacts to stress, mine doesn't. Prior to my noise exposure in October last year (I played an acoustic piano like an amateur for an hour) I had tinnitus for 20 years already, was by and large habituated and the only thing that seems to have affected it was ibuprofen.

However since October last year, my tinnitus has been insane. A higher pitch than I had and more noises in each ear. It's only in the past four to five weeks that I have noted my tinnitus reacts to noises like plastic bags being crumpled, crisp packets, paper.

Again, I have no pain, no fullness, no hearing distortion, just this rise in tinnitus volume. Sometimes I think certain sounds sound louder but when I ask my wife if she thought that sound was loud she'll often say yes it was and it would bother most people. I don't like plates clashing together, not because it hurts, just because I personally don't like it. I also think there's an element of fear mixed in that I worry it might my tinnitus worse. I just seem to hone in on these sounds mentally. And now it's reacting, it's almost like my fear has come true.

I can handle Tinnitus well to a degree, but this reacting to external stimuli has destabilised me in a big way. Steady state Tinnitus would be preferable. Is there anything I can do that can help eliminate this reactivity. TRT is mentioned and I know this involves sound enrichment and inner ear noise generators. Are these likely to remove the reactivity?

Incidentally, have you heard about the Neuromod device named Lenire, that's due to be released soon?
Also....I appreciate the principle of not over protecting from normal everyday sound, but is a vacuum cleaner considered normal or too noisy? Or a shower (which triggers my reactive T). Should I protect myself from these sounds?

I also should mention that up until about 11 weeks ago I was taking Venalaxafne, then I switched to fluoxetine and it was about 4 weeks into using Fluxetine that I noted my reactive T

Best regards

Alan
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Rob

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Posts: 32
Reply with quote  #6 

Alan, when tinnitus is distressing to us it is human nature to look for an explanation.  You are in a very long line of folks who become concerned that exposure to normal sound will worsen their tinnitus.  When this concern hardens into a belief, your auditory system monitors sound in your environment and is on alert for any sound you believe may be dangerous to you.  You may be assuming that because you can hear your tinnitus above certain sounds (e.g., plastic bags being crumpled), the volume of your tinnitus has grown louder in reaction to exposure to these sounds.  What you describe is what happens when we track a sound that is threatening to us.  For you, the threat is the fear that by exposing yourself to certain sounds, your tinnitus will become worse. 

You asked if there are steps you can take to eliminate this dynamic.  Absolutely, yes.  In my view, the experience you are describing is generated not by tinnitus, but by your own thinking, fear, beliefs, and actions.  You may need to shine a light on your thinking and beliefs about tinnitus to see if they stand up to a little scrutiny, and take the focus off what tinnitus does or doesn’t do.  In this regard, you may need a little help with some simple techniques to help you do that.  I recommend reading a good book called Tinnitus: A Self-Management Guide To The Ringing in Your Ears by Jane Henry and Peter Wilson.  The authors apply some basic tenets of Cognitive Behavioral Therapy to tinnitus management.  It is extremely important to consistently do the exercises in the book, particularly in Chapters 4 and 5.    

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

I suggest that you stop wearing hearing protection in the shower. 

Tinnitus is not a side effect of the medication you are taking.           

Rob

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Alan1967

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Reply with quote  #7 
Many many thanks Rob, I truly appreciate it.

Best regards

Alan
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TallDude

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Posts: 121
Reply with quote  #8 
Hi Alan,

I experience 'reactive' T too as you describe. Low in the morning and building up to the evening. I can be exhausted in the evening.
I use earplugs as minimum as possible, but certainly for vacuum cleaning because these can be loud.

However if i don't use plugs and keep myself for longer times (5-6 hours) in a busy environment, not necessary loud, this can trigger a louder T and H for me even for a few days, with ear pain/fullness/inflamation.

I know me T is effectively louder when i have this onset period. Because i can manipulate me T with neck movement (loudness increases) called somatosensoric T. When i do these neck movements in an onset period the volume increase is not or only very slightly noticable.

I also took me a very long time to find out that talking for longer periods increases my T.
When you're in an outdoor environment you naturally raise your voice. Even a short louder conversation can trigger an onset period for me for days.

Best regards

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Steve2017

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Posts: 132
Reply with quote  #9 

Hi TallDude, just picking up on your comments about increased T after long conversations - people on here know a lot about T and solutions to possibly help, so many different ideas some of which is new to me as ive been focusing my studies elsewhere.

Now, human energy and positive mind, thats my area where my studies have been over the last few years. So i'd like to share some of my knowledge with anyone interested here if thats ok.

Energy... we are all made of energy bones and blood, everything is energy, and energy is transferred from one person to another, it happens every day! So firstly if you are having a conversation with someone who complains a lot, and after the conversation they say thank you I feel so much better and you might feel drained 'depending how strong your energy is in the first place' - then they've had some of your energy, yes sounds crazy - just look up how energy transfers from one human/ person to another.

We need to keep strong during the day to fight T and back it off a bit.

I think long conversations will drain people anyway, tiring, T will love that, thrives on tiredness.... I have this T help theory ' open your mind' - allow an hour for this... Write down 2,3,4 small jobs to do around the house, write them down and then rest for 5 to 10 mins - completely clear your mind of them, calm your mind, deep breaths, imagine eating your favorite snack over and over drifting down a river, or think of other nice thoughts.

Then I say to myself 'ok get up, get on with it' - and I open my mind, focus deeply on the jobs in hand, thinking of only those jobs as I do them, then an hour or two later I find T is down until the next bit of stress comes along that is lol, there's always some of that on the horizon.

We have to watch out for some of the things that increase T though - thoughts / actions / stress / adrenalin - all increases it, in my opinion. calm and rest is what we should look for during our day, one to three 5/10 mins relaxation sessions as in meditation, nice deep breaths.

And also watch how much screen time, not good for T if screens are bright and if phones are on charge when handled.

Hope this helps someone, kind regards Steve.


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EDogg

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Posts: 167
Reply with quote  #10 
Hi TallDude,

Hope all is well. Identifying and treating Somatosensory tinnitus, using a multidisciplinary approach including coordination between audiologist/neuro-otologist and physiotherapist, is an area of research interest. Apparently forms of physical therapy, including myofascial therapy and trigger point therapy (amongst other approaches) can be a helpful adjunct to treatment. This model is utilized at the Cleveland clinic here in the US. An audiologist I know is currently researching their model and applying it to a large cohort of patients with somatosensory tinnitus. I’m not sure if you’ve looked into this as it might be helpful for you.

Best,
EDogg
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TallDude

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Posts: 121
Reply with quote  #11 
Thx for your replies.
@steve2017: it's not just necessary long conversations, a simple short conversation at the grocery with a local can trigger it. I also noticed several times especially at dinner, just talking with wife and kids and then suddenly i can get a louder T.

I do have very long screen times daily and actually 7 days a week, however i have set my screens not to bright. But this is something i could test in the holidays, f.e. a week without any screens.

@EDogg: I'm doing ok lately, i hope you are doing fine too. Actually my ENT also suggested to get some physical therapy for my jaw and neck muscles. I didn't follow up his advice on this because my T is due to trauma. But then again, i could try it. There has been a period my somatosensory T was almost gone.
I'm having less pain and T and H onsets, but this might just be because i have adapted my lifestyle and the fact that i avoid louder and longer conversations and of course noisy places like restaurants. But it is still difficult to cope with. My social life is very restricted. I still had so many plans and now i'm scared for the future.
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Steve2017

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Posts: 132
Reply with quote  #12 

Hi TallDude,

I think keeping a strong mind is so important with our on going battle against T - In my opinion to keep a strong mind we don't need a tired body - I think when the body is tired & exhausted the brain and the mind are all over the place trying to help with fatigue.

My point here is don't exchange the TV on holiday with too much extra walking - what we're looking for is, ok long walk then rest for 10/15/30 mins clear the mind. And when resting outside and looking up be 'in the moment' admire that bird flying overhead for example, to calm your system.

So my thoughts are walk rest, walk rest - or during working days keep busy then rest, keep busy then rest.

When in short conversations keep a strong mind 'focus' and think to yourself 'this conversation is good for my T - but keep it short' because if you're going into the conversation thinking its going to increase T, then it will.

With mobile cell phones I would avoid handling or putting to ear, we all get contact with some radiation daily but mobiles when on charge I believe with my research send out 1000 times more radiation when on charge - but it only comes out for about 1 cm then goes back in, but its like its glowing bad energy, also the same with bright 'blue' LED lights, and we don't need this with our on going fight against T.

Steve.


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s simpson
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Aplomado

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Posts: 625
Reply with quote  #13 

Tinnitus retraining therapy can help some people learn to ignore tinnitus.

It is uses that same sound generators that my hyperacusis therapy uses.

I have mild tinnitus only, fortunately.

You may wish to look into TRT.

I haven't done it specifically, but based on my experience with the sound generators I think the theory is sound.  (by wearing sound generators set just below your level of tinnitus, you train your brain to ignore the tinnitus sound... my audiologist said if the therapy is successful, the patient will not "hear" the tinnitus 90% of the time, and the 10% of the time they do hear it it will not bother them).

It is not cheap, unfortunately.

https://en.wikipedia.org/wiki/Tinnitus_retraining_therapy

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Alan1967

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Reply with quote  #14 
Hi all

Little update. I saw a Hyperacusis consultant at my local ENT and was diagnosed with H. I have started Hyperacusis Desensitization Therapy....basically a white noise generator that I listen to at a set volume daily for a time length that I determine, then increase that time gradually until I reach 6 hours per day. Then I increase the volume and start back at the minimum time again, again building up in time until I reach 6 hours again, rinse and repeat.

I'm a little worried because I've noticed that when my tinnitus is bad, my Hyperacusis is more sensitive, but, when my tinnitus is manageable or very very low, the Hyperacusis is the same.

How bad my H is is determined by how bad my T is.

This make me think that I can never get rid of it if its the T severity that is determining how bad my H is.

Any suggestions please?

Thanks

Allan
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Aplomado

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Posts: 625
Reply with quote  #15 
Frequently, hyperacusis comes before tinnitus.  I don't think tinnitus causes hyperacusis, though there is an obvious correlation between the two.
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