Almost Every Noise Spikes My Tinnitus

[Wrfortiscue]

@ZFire, @Stacken77, @GeorgeLG, thank you for the kind words, you don't know how much it means

@aura, @Damocles, you guys crack me up lmao. I know aura first pointed that out... my bad @Michael Leigh, it's just a habit I have.

I use humor daily to get me through even before tinnitus, life is just hilarious even if I'm at the butt end of the cruel joke.

Lol.

 

[GeorgeLG]

I use humor daily to get me through even before tinnitus, life is just hilarious even if I'm at the butt end of the cruel joke.

Lol.

LOL.

 

[AnthonyMcDonald]

Anthony this is still very early for you.

You are still in panic mode.

This period will pass and you will realise that these noises can go on and you can have a normal life. Eventually they may even disappear. I was free for over 3 years after torment of over 2 years.

Hang in there. Take one day at a time. Eat well, rest when you can.

It WILL pass.

With all due respect I haven't been in "panic mode" for many months now. I do not have panic attacks. I do not have anxiety. I just suffer. I cannot live a normal life when chewing food and swallowing water permanently increases my tinnitus loudness and tones, and catastrophic hyperacusis keeps me from leaving my bed or even moving.

 

[GeorgeLG]

With all due respect I haven't been in "panic mode" for many months now. I do not have panic attacks. I do not have anxiety. I just suffer. I cannot live a normal life when chewing food and swallowing water permanently increases my tinnitus loudness and tones, and catastrophic hyperacusis keeps me from leaving my bed or even moving.

There are many causes for tinnitus and hyperausis so this is not one monolithic condition. One cause has to do with nerves that originate in the body or neck/jaw, especially related to hyperacusis. The vagus and trigeminal nerves are examples. Part of what you describe sounds like a nerve disorder which may refer pain and sensitivity to the ear. You may want to consider seeing a neurologist or specialist in TMJ.

George

 

[Wrfortiscue]

There are many causes for tinnitus and hyperausis so this is not one monolithic condition. One cause has to do with nerves that originate in the body or neck/jaw, especially related to hyperacusis. The vagus and trigeminal nerves are examples. Part of what you describe sounds like a nerve disorder which may refer pain and sensitivity to the ear. You may want to consider seeing a neurologist or specialist in TMJ.

George

Do you have a theory in which noise induced tinnitus can be somatic as well? Jaw/neck.. You said vagus and trigeminal nerves?

 

[GeorgeLG]

My research is related to hyperacusis because for me that is the bigger challenge. I have been able to largely ignore tinnitus most days but the ear and head pain from normal sounds is the bigger challenge because I am a musician. I got started down this path because jaw pain and clicking showed up as well as neck face and head pain with the ear pain. Research led me to a comprehensive research paper on primary and secondary causes for ear pain and that is where I saw references to nerve function as a possible secondary cause. My ENT also mentioned TMJ. It can be nerves that terminate at or near the ears or travel alongside nerves that involve the ears. I do not have much of a sense if this can also explain some cases of tinnitus without ear pain.

For me, neuroplasticity and brain retraining is doing a good enough job making tinnitus a relative non issue. Since the ear pain has not resolved with the tinnitus my sense is that this for me has its origins in nerve function. I also have a large tumor in my chest covering my heart that is on the side of my ear pain that has started to affect breathing, swallowing and heart function. This will be removed at the end of the month and may have an effect on this problem, hopefully positively.

Hey, where is my lol after your question? Lol.

George

 

[volsung37]

With all due respect I haven't been in "panic mode" for many months now. I do not have panic attacks. I do not have anxiety. I just suffer. I cannot live a normal life when chewing food and swallowing water permanently increases my tinnitus loudness and tones, and catastrophic hyperacusis keeps me from leaving my bed or even moving.

I am sorry if I jumped to conclusions Anthony.

May you be well.

 

[AnthonyMcDonald]

There are many causes for tinnitus and hyperausis so this is not one monolithic condition. One cause has to do with nerves that originate in the body or neck/jaw, especially related to hyperacusis. The vagus and trigeminal nerves are examples. Part of what you describe sounds like a nerve disorder which may refer pain and sensitivity to the ear. You may want to consider seeing a neurologist or specialist in TMJ.

George

Thank you for the reply. You mean that hyperacusis of this magnitude can be caused by the jaw?

 

[GeorgeLG]

Thank you for the reply. You mean that hyperacusis of this magnitude can be caused by the jaw?

I am saying that hyperacusis or ear pain can be caused by nerve problems and one possibility is the jaw/TMJ/trigeminal nerve system. I am not a doctor and have no clinical treatment experience and so I cannot assess your particular symptoms and know the likelihood of this possibility but I brought it up as one possibility for you because of the way you describe your symptoms. I think that for most of us relief comes with trial and error, working through the most likely things that might bring relief. This is not just one condition with only one cause.

All the best,
George

 

[ZFire]

Reactive tinnitus and hyperacusis are most definitely linked. I can attest to this, as when my hyperacusis began to abate, so did my reactivity.

100% agree. I can attest to this myself.

There is definitely an observable relationship between hyperacusis and reactive tinnitus and so I agree too. When my sound sensitivity was at its worse (August), if I were to make splash noises in a bathtub filled with water, I would end up having a spike (new tinnitus noise) almost immediately which would last for a few days. Now that my sound sensitivity has improved immensely, I tried replicating this same scenario multiple of times, but nothing happens now! I even raised the stakes by dropping water at a much higher height. No reactive spike from it anymore. I'm now exploring listening to sounds at much longer durations to see what kind of impact if any it causes me. Once you get a good handle on hyperacusis, I think all the other pieces of the puzzle like tinnitus, reactivity, distortions will fall into place.

PS. If you detect even the slightest hint of improvement, take that as a major sign that you are headed in the right direction. Non linear progression is a real thing.

 

[Stacken77]

There is definitely an observable relationship between Hyperacusis and reactive tinnitus and so I agree too. When my sound sensitivity was at its worse (August), if I were to make splash noises in a bathtub filled with water, I would end up having a spike (new tinnitus noise) almost immediately which would last for a few days. Now that my sound sensitivity has improved immensely, I tried replicating this same scenario multiple of times, but nothing happens now! I even raised the stakes by dropping water at a much higher height. No reactive spike from it anymore. I'm now exploring listening to sounds at much longer durations to see what kind of impact if any it causes me. Once you get a good handle on hyperacusis, I think all the other pieces of the puzzle like tinnitus, reactivity, distortions will fall into place.

PS. If you detect even the slightest hint of improvement, take that as a major sign that you are headed in the right direction. Non linear progression is a real thing.

Thank you for sharing!

 

[Forever hopeful]

For about six months now I've also been experiencing exactly these things you describe. The spiking sounds, which typically last less than .5 second, tend to be glassy/metallic in nature (sometimes like the sound of knives sharpening), as is a large component of my overall tinnitus now. A mild generalised hyperacusis has also set in, which is a real game changer (I think the hyperacusis underpins this overall change in character of my own sounds).

Earlier this year when I visited the audiology clinic at my local hospital and described the sensation of transient spiking sounds that often make me wince, the audiologist mused that my condition "sounds like recruitment". I have to say that further research on the subject of recruitment actually just left me with more questions than answers.

I went on to purchase Neil Bauman's Hypersensitive To Sound book (the inexpensive download version) to see if there might be any answers there. I also corresponded with Neil by email. It was his view (and mine too to some extent) that my situation cannot be categorised as recruitment because it isn't accompanied by any severe hearing loss (I have noise induced hearing loss down to 35 dB @ 4 kHz in one ear and between 4 kHz-8 kHz in the other ear). What Neil believed I'm affected by is, reactive tinnitus.

I'd like to say something about reactive tinnitus. I don't believe reactive tinnitus is a condition all on its own. Instead I believe reactive tinnitus describes a symptomatic intersect between tinnitus and hyperacusis that may occur in some people affected by both of these conditions. Reactive tinnitus is something that's discussed quite at length in Neil's book, and from what I can now understand, in terms of management approach, the general consensus of opinion between the audiologists he quoted (and if I remember rightly Neil Bauman too) is that when hyperacusis and tinnitus co-exist, treatment for hyperacusis must be carried out first.

It's apparent from reading this forum that treatment for hyperacusis divides people. Some have had success, others state there is no treatment available for hyperacusis. I honestly don't know. I suppose it depends on the type of hyperacusis one has. It seems there may be a distinction between loudness hyperacusis and pain hyperacusis, with the latter potentially being more difficult to treat/manage, but not impossible. @Damocles who's a good ten years into this, did say it is possible to habituate to our kind of malady. A comment for which I'm grateful. Go well, man.

I'm so sorry you're going through this. I don't have hyperacusis but the spikes you describe are me. Knives being sharpened for a short period of time. Sometimes it lasts longer. What the heck is going on? It is maddening. Then it will quiet down for a while. Sometimes for a few months I can still hear it but the spikes are much quietly although just as high pitched. This is the second day this week I have had massive spikes. I'm told my therapist my life was over. I can barely work. Can't sleep. I am a mess. This is no life.

 

[Exit]

There is definitely an observable relationship between hyperacusis and reactive tinnitus and so I agree too. When my sound sensitivity was at its worse (August), if I were to make splash noises in a bathtub filled with water, I would end up having a spike (new tinnitus noise) almost immediately which would last for a few days. Now that my sound sensitivity has improved immensely, I tried replicating this same scenario multiple of times, but nothing happens now! I even raised the stakes by dropping water at a much higher height. No reactive spike from it anymore. I'm now exploring listening to sounds at much longer durations to see what kind of impact if any it causes me. Once you get a good handle on hyperacusis, I think all the other pieces of the puzzle like tinnitus, reactivity, distortions will fall into place.

PS. If you detect even the slightest hint of improvement, take that as a major sign that you are headed in the right direction. Non linear progression is a real thing.

Mine was opposite when my hyperacusis was at its worst (moving on a pillow felt too loud).

My reactivity went constant and then faded away to a gentle hiss within 10 days.

It was a very odd behaviour...

 

[UKBloke]

I'm so sorry you're going through this. I don't have hyperacusis but the spikes you describe are me. Knives being sharpened for a short period of time. Sometimes it lasts longer. What the heck is going on? It is maddening. Then it will quiet down for a while. Sometimes for a few months I can still hear it but the spikes are much quietly although just as high pitched. This is the second day this week I have had massive spikes. I'm told my therapist my life was over. I can barely work. Can't sleep. I am a mess. This is no life.

Have you read Neil Bauman's Hypersensitive To Sound? If not, I'd recommend purchasing it. He offers an inexpensive download version too. There's discussion in there about reactive tinnitus (a term, which I believe describes a symptomatic intersect in some people between tinnitus and hyperacusis). As well as tinnitus, it may be that you also have a very mild form of hyperacusis that is essentially creating what some in the book refer to as 'funny' tinnitus or strange tinnitus. Essentially a tinnitus that misbehaves itself as ours does.

I now believe my original 'funny' tinnitus was basically a form of reactive tinnitus back in the days when I didn't have much sense of there being a mild hyperacusis present. Unfortunately, I continued to assault my ears with headphones and have ended up paying the price. I think the main thing is to try and find a sympathetic audiologist that specialises in tinnitus/hyperacusis management. We can fall into the trap of believing that our local health care providers/ENT/Audiologists do have a firm grip on this malady, but in my ongoing experience that hasn't been entirely true. All the best.

 

[Forever hopeful]

I can't cope with it. There is nothing I can do. I can't use any type of sound enrichment or masking because my hyperacusis is catastrophic. I cannot even open or close a door without a permanent increase in tinnitus. I have to wear double hearing protection at all times that just increases the noise of my own body. I have to lie in bed all day to delay the constant worsening.

I am so sorry that you're going through this. My heart breaks for you. I know what it's like to feel trapped in your own body although I don't really have hyperacusis. But I do get screaming tinnitus that makes me wanna claw my ears off. But I really do believe that you need some help to sleep.

I know you wrote that you don't think medication would help you, but have you tried any? Lack of sleep is a huge contributor to the increase in tinnitus.

 

[Forever hopeful]

Have you read Neil Bauman's Hypersensitive To Sound? If not, I'd recommend purchasing it. He offers an inexpensive download version too. There's discussion in there about reactive tinnitus (a term, which I believe describes a symptomatic intersect in some people between tinnitus and hyperacusis). As well as tinnitus, it may be that you also have a very mild form of hyperacusis that is essentially creating what some in the book refer to as 'funny' tinnitus or strange tinnitus. Essentially a tinnitus that misbehaves itself as ours does.

I now believe my original 'funny' tinnitus was basically a form of reactive tinnitus back in the days when I didn't have much sense of there being a mild hyperacusis present. Unfortunately, I continued to assault my ears with headphones and have ended up paying the price. I think the main thing is to try and find a sympathetic audiologist that specialises in tinnitus/hyperacusis management. We can fall into the trap of believing that our local health care providers/ENT/Audiologists do have a firm grip on this malady, but in my ongoing experience that hasn't been entirely true. All the best.

Thanks. Perhaps but I can't figure out what it is reacting to. It has been quiet all day. Right now I'm just sitting down in a quiet living room and it is blaring away. I have not assaulted my ears in the past few years. As a matter fact I've been very careful. I wear earplugs in loud environment. Never use headphones. My ENT has tinnitus herself.

 

[UKBloke]

If your ENT has tinnitus then at least she can relate to what you're dealing with.

My own experience with reactive tinnitus is that it doesn't necessarily require an immediate external sound to react to. It's just that overall, the tinnitus these days for me is very dynamic, which during the past couple of years I've associated with a gradual onset of mild hyperacusis. I find diet can be a factor too, inflammation, even the weather. Hope things improve for you soon.

 

[AnthonyMcDonald]

I am so sorry that you're going through this. My heart breaks for you. I know what it's like to feel trapped in your own body although I don't really have hyperacusis. But I do get screaming tinnitus that makes me wanna claw my ears off. But I really do believe that you need some help to sleep.

I know you wrote that you don't think medication would help you, but have you tried any? Lack of sleep is a huge contributor to the increase in tinnitus.

I can sleep. Doesn't help much though. Clonazepam even at high doses does absolutely nothing for my tinnitus or hyperacusis.

 

[Forever hopeful]

I can sleep. Doesn't help much though. Clonazepam even at high doses does absolutely nothing for my tinnitus or hyperacusis.

Sorry to hear. Klonopin in high doses is probably not helpful in the long run.

 

[pixiebelle]

Thank you for sharing!

Hi there. I haven't been on this forum for a long time and as don't usually use forums/social media so not really sure what I am doing ;0

I am a member from the UK that has been diagnosed with TTTS via the NHS, as the muscle in my ear could be heard misfiring by a consultant using a special device. Well he heard a clicking noise anyway

In the past I have also been diagnosed with maxofacial pain, TMJ/TMD, so much so that part of my jaw used to go numb. I now have a standing desk which has fixed that

I tried to search up people like myself as I am having extreme tinnitus at the moment. I notice our tinnitus is similar, I have sound issues with cutlery too and running water, which is particularly annoying as most tinnitus sound machines have running water soundtracks (does anyone enjoy these?!)

The things I need help with from the reactive tinnitus/ TTTS community is.

1) How to reduce my hyperacusis/ desensitise? Do you have to start with silence and get your tinnitus down first? Or can you start to desensitise when tinnitus is at a massive height as mine has been for a week or two now?

2) I have been taking what we call in UK Zopiclone which I believe you mention as 'benzos'? Not sure if this is same thing? You mention people need to avoid this. I have been taking it for a few years due to loud multitone tinnitus in both ears caused by exposure from fire alarm a long time ago and a few years ago loud headphone use. I used to take a small part of a tablet (not even one whole tablet) to help get to sleep, recently I had to go up to whole tablet per night due to tolerance. Is there a safe way to taper off these and is there anything I can use instead to help with sleep?

Grateful for any help or advice.

Best wishes from UK,
Pixie

 

[MindOverMatter]

@pixiebelle

1) No, you can use sound therapy of your preferred choice to desensitize any time imo. But it should be a sound you can have some positive associations too. So avoid running water if you don't like that sound. Maybe smooth pink noise could be something to try, opposite to running water which is typical white noise.

Or birds, fire crackling - anything that doesn't make you anxious or annoyed. If it do annoy you, take one step back.

Just make sure you do not set volume louder than your tinnitus. You should be able to hear your tinnitus.

Progress slowly.

2) I have no experience with anti-depressants myself as I've only opted for natural remedies, but I've heard that benzos for instance may hinder the brains neuroplasticity.

I can't answer for the tapering (other than I understand it has to be done slowly).

I can recommend Holy Basil Extract for sleep.

 

[pixiebelle]

Thanks so much for your help and advice

1) I have something called Tulsi tea which I think is Basil, I didn't know I could take it at night for sleep so will try it, thanks

2) I have sound maskers from the NHS (sit behind ears but just play sound), my tinnitus is so loud it is drowning it, I think I can turn them up though, so will try that. Unless people think that in-ear sound maskers aren't helpful? The brand is Oticon. Yes I have a sound machine and iPod (yes I still own one) I will try to find pink noise tonight.

3) My living situation means that I am exposed to the oldest noisiest central heating in the UK! Sounds like water hissing through pipework like a tap. It aggravates tinnitus. As a general rule should aggravating noises be removed e.g., move house which I have trying to be doing for the last two years anyway (as I do not own the property) or should we put up with aggravating noises to desensitise?

4) Tonight my tinnitus was set off by the ancient washing machine here which has a spin mode like a jet engine :O grateful if any UK people could shout out a non aggravating washer/tumbler brand/model I can get? I tend to be bothered by high pitch over low pitch noises.

Any further advice from community over tapering sleep tablets and desensitising is welcome, I could frankly do with all the advice I can get. Have been going it alone for quite a few years as no one I know has a similar issue (white knuckling it) so feels good to get advice from community

 

[Stacken77]

Hi, @pixiebelle

Sorry to hear about your struggles. I think you got some great answers from @MindOverMatter. I'll just share my thoughts.

1) How to reduce my hyperacusis/ desensitise? Do you have to start with silence and get your tinnitus down first? Or can you start to desensitise when tinnitus is at a massive height as mine has been for a week or two now?

If the tinnitus spikes very easily, from low level sound, you should be very careful. We want to improve the loudness hyperacusis without worsening the tinnitus permanently. If you can get the tinnitus down a bit by staying in silence, you could do that. As for desensitization, I would personally not recommend continuous sounds, like a fan or white noise since those seem to irritate the auditory system more easily, at least for many. I went and got high fidelity custom molded ear plugs with interchangeable filters. They let through more high frequency sound, which I'm most sensitive to, and I use a lower filter, like -15 dB instead of having a foam ear plug cut 30-40 dB in the higher frequencies. It can be a little tricky, but it can be done. Don't expose yourself to sound that you feel are "uncomfortable", doing so can cause setbacks and make the tolerance drop further.

2) I have been taking what we call in UK Zopiclone which I believe you mention as 'benzos'? Not sure if this is same thing? You mention people need to avoid this. I have been taking it for a few years due to loud multitone tinnitus in both ears caused by exposure from fire alarm a long time ago and a few years ago loud headphone use. I used to take a small part of a tablet (not even one whole tablet) to help get to sleep, recently I had to go up to whole tablet per night due to tolerance. Is there a safe way to taper off these and is there anything I can use instead to help with sleep?

If I've referred to Zopiclone as a Benzodiazepine in my postings, then I was formally incorrect because it's a "non-benzodiazepine", though, it shares very similar molecular structure to that of Benzodiazepines. I think the reason why I lumped them together was because Zopiclone targets GABA-receptors and builds tolerance. The reason why I've advised against such medication is because the tolerance can cause withdrawal when coming off, and that has caused increased tinnitus and hyperacusis in some.

As for how you should taper off, I'm not qualified to answer that because I've not been through the process myself. I've read some people filing the pills and measure it on a fine scale, or use it in liquid form. You should probably speak to your doctor, and if they aren't willing to help you, search for similar people on here or elsewhere that has managed to taper off.

Don't lose hope, things can get a lot better!

Wish you well,
Stacken

 

[pixiebelle]

Thanks very much for your reply Stacken.

I've disappeared off the forums for 2 days because I actually had a bad head cold. Maybe that was the reason for my spike as well? The tinnitus has been very loud for maybe 2 weeks now and I did feel a bit run down and sinusy. My tinnitus does seem to be more easily aggravated recently as you say by things such as my central heating coming on. Though it is an ancient system and very loud.

Yes I've had the same experience with things like continuous sound such as white noise and fans. I can only use Blue Air which I think is maybe from Sweden (though I may be wrong about that) on the lowest setting.

I do put some of my things, like some machines, on timer plugs.

When you mention the earplugs, I had to have a little sigh to myself. I tried to have musicians earplugs fitted at the UK branch of Boots, which is a chemist here, they were special ones to reduce noise and they were made of acrylic. However, I developed swelling and irritation immediately after trying them and so had to take them back in the end. I don't know if this is something that only I experienced but but the the audiologist commented that my ear tubing was like that of a 2-year-old. There is also a twist at some point of my ear canal which means at one place is incredibly narrow. I also used to have otitis media which probably means my skin is incredibly sensitive. I certainly have a lot of allergies, probably a lot more than most people.

So basically unless someone tells me acrylic is a nightmare and I should use something else I might be scuppered as far as the musicians earplugs are concerned although I could try something else softer like silicon I guess. I have been using wax earplugs which I can mould to my ear and doesn't seem to irritate them as badly. Though I can only stand them for a few hours.

It sounds like what you're saying, reading between the lines, is that that I need to reduce my noise exposure first and then graduate back up to normal.

I vaguely understand about GABA, it's something to do with with aminoacids and Glutathione turning your response from flight to relax, or something like that. I'm feeling that you are telling me that this drug may be interfering with that process?

Were you saying that the earplugs reduced your exposure to high noises? Is that something that will help with my my tinnitus if high noises are my problem, which they are?

 

[hears4fears]

I had lower ringing this morning and noise from the day kicked it up it's so loud now. My ENT said my auditory nerve was being overstimulated. It's not damaging your hearing, just inflaming it I guess.

I'm really terrified too, I don't know what to do or tell ya. One big thing is I'm stressing right now and that's making it worse. The thing that scares me is is it permanent and is it going up and where will it stop. It sounds like that's what OP is saying, although I'm also having ototoxic reactions, antioxidants etc.

Make sure it's not caused by something other than noise too, diet, blocked ear tubes, random nature of it?

 

[DaveFromChicago]

Michael Leigh: I find it beyond incomprehensible that you would cite my style as "overly complicated"; did you ever read Dickens, Melville, Thomas Hardy, Faulkner, etc.? They make me sound elementary.

And by the way, I find it ever so revealing about who you really are that you would regard them as (by extension) also "overly complicated."

Grow up, Michael.

 

[GeorgeLG]

Harbouring anger and resentment is unhealthy, something that people in our condition don't need. Who cares what other people think of us, we must develop our own opinion of who we are. In the end our inner peace and self worth has to come from within us. If we are not worthy of respect, if we are not proud of who we are then it's up to us to change that. If all is well then, all is well and no external commentary can derail that. Other people's opinion of us is none of our business, except for those trusted few in our inner circle that we go to for council and advice.

All the best,
George

 

[dan]

I can barely hear anything at all through my tinnitus because it is so loud

...this has to be some form of hearing loss. Tinnitus can make you not hear things? I may be wrong about this, but I'd appreciate some more clarification. Just trying to understand severe tinnitus better.

With all due respect I haven't been in "panic mode" for many months now. I do not have panic attacks. I do not have anxiety. I just suffer. I cannot live a normal life when chewing food and swallowing water permanently increases my tinnitus loudness and tones, and catastrophic hyperacusis keeps me from leaving my bed or even moving.

What? Have these increases stabilized by now?

 

[AnthonyMcDonald]

...this has to be some form of hearing loss. Tinnitus can make you not hear things? I may be wrong about this, but I'd appreciate some more clarification. Just trying to understand severe tinnitus better.

What? Have these increases stabilized by now?

More or less. Still suffering immensely and nowhere near normal life. Sound still spikes me permanently but not to the extent of what it once did.

 

[EternalRinging]

@AnthonyMcDonald, how are you doing? Are you still sensitive to spikes?