Why Is My Tinnitus Reactive If It Isn't Hyperacusis?

[Syb]

Hi everyone.

This new 'reactive' tinnitus has been going on for 3 months now.

The audiologist said it was somatic tinnitus, said I should do physiotherapy as a few things seem to indicate it could be caused by my jaw or neck / cervical spine (i.e. I can wake up to almost or no tinnitus, then I turn or stretch my neck, or yawn and my jaw cracks, and suddenly cicadas & crickets are yelling at me again as they're being electrocuted).

She also ruled out hyperacusis. Supposedly my LDL test came back normal and I only have mild recruitment. Here's my audiogram:

(For the record, while I have hearing loss, there is no known acoustic trauma. ENT thinks it might be a birth defect — we're still investigating).

If I don't have hyperacusis, then why does my tinnitus increase to some, but not all, loud sounds? For example, the shower, epilator & electric shaver even suppress my tinnitus. Yet when my computer fan gets loud or when trying to watch TV, my tinnitus (or my perception of it, maybe?) becomes really loud and gives me anxiety.

I also have this. Constant clicking noise as a reaction to any sound. Like some sort of feedback. It's part of the reactivity but it's basically a feedback sound to external sounds.

However, I noticed that muscle relaxants reduce the reactivity, and tranquilizers pretty much suppresses the reactivity (doesn't really lower the tinnitus that much though, but whatever, I don't mind).

What the hell is that reactivity? Could it be related to the nervous system, considering that medications that calm me down suppress that reactivity?

Plus, how can my tinnitus only be reacting to some loud sounds? Am I developing phonophobia or something like that? Any idea what's going on? My audiologist seems to have no clue. She keeps telling me to do sound enrichment but even basic pink noise triggers the freaking little clicking sounds so at this point, I almost prefer 'silence' to this constant clicketyclick.

I mean, I am an anxious, depressed mess because of this condition so obviously I'm not making things any easier for myself and my tinnitus...! I'm aware the nervous systems influences tinnitus greatly, so I suppose it's not out of the question that it makes it reactive as well...?

Any insight would be greatly appreciated. Thank you so much.

 

[Marcuso22]

People have different ways of defining reactive tinnitus. It's assumed by some that it's hyperacusis in combination with tinnitus. My tinnitus in both ears are not static, have multiple tonal sounds in combination with loud blowing sounds & it can spike if exposed to sounds that it finds irritating or too loud. When I close up a bag of chips or pretzels my right ear reacts with a swirly sound. My right ear makes a louder tonal sound when my refrigerator compressor goes on. It also reacts to running water, computer fan, car noise, & bathroom lights but not other lights that I can detect. My right ear reactive tinnitus will compete and end up going louder when making TV or Radio louder.

I also have Temporomandibular Disorder - TMD. You also may have this and may want to see a dental oral maxillofacial surgeon who specializes in that as it could be contributing to your tinnitus. You may be grinding your teeth when you sleep.

Why some people react to certain things but not others may have to do with the frequency of the external sound in relation to your inner ear hearing loss frequency.

 

[MindOverMatter]

@Syb, since we "hijacked" a thread, unintentionally, posts were deleted. So I figured it's better to post more specific on-topic here.

I don't know if you got to read my last message before it was deleted?

It would be nice to hear your progression with osteopathy as I have considered this type of treatment myself in regards to neck and jaw issues.

 

[Syb]

@MindOverMatter, yeah, I had time to read everything I think! (Sorry to the OP for hijacking, didn't mean to!) Thanks for all the information and explanations — very informative, I appreciate it.

I'll let you know if osteopathy helps... I've only been there once, next appointment is in a few days. The osteopath said I had a lot of tension in my chest, which makes me pull my shoulders forward and can cause pain in the cervical spine, upper back, traps, etc. (Which is definitely my case.) We'll see if getting rid of this tension and improving my posture helps. If I forget to update you, feel free to remind me!

As for having hyperacusis... well, that's the issue. Since technically I don't have hyperacusis, my doctor and specialists are treating me as such. My ENT insisted that the MRI shouldn't be an issue since I don't have hyperacusis — even though I mentioned the sound sensitivity. (As I write this, my base tinnitus is relatively low but I'm so sound sensitive that pink noise irritates me... so I'm listening to neuromodulation at my tinnitus frequency — it kinda helps sometimes since I can't mask and sound enrichment is basically impossible most days). I mean, if vacuuming for 5-10 minutes (with earplugs) spiked me for over a day and increased my sensitivity & reactivity to sound, imo there's definitely something going on there!

When I went for the hyperacusis test, something weird happened and I think it may have falsified the test results maybe? I took the elevator to the audiologist's office and my tinnitus was suddenly basically nonexistent (well, my old hearing loss tinnitus was still there, but it's so mild that I don't mind it). It's as if the elevator did... something. It's so weird. We were trying to determine the frequency of my somatic tinnitus but I couldn't even hear it for the whole duration of my appointment. Then we proceeded to do the hyperacusis test. Normal results. Even at a pretty high volume, the tones didn't spike me. I really don't understand how this tinnitus works, seriously. Nothing makes sense.

The audiologist recently suggested tinnitus rehab... whatever that is, since I'm still struggling with habituation (kinda hard when you have reactivity and multiple sounds that change every day) and also emotionally. She mentioned I could get psychological support at the rehab facility, which would definitely be welcome since my own therapist won't be able to see me for a couple months and I've been so anxious and depressed. (Suicidal, even, at times.) Unfortunately the pandemic is making it really hard to find a therapist where I live (understandably) so I need to bide my time. Meditation / mindfulness & deep breathing exercises help... but only temporarily.

Anyways... If anything, at least I'm lucky that I'm working from home at the moment, in an environment where I can control sounds... That definitely makes my life easier.

(Sorry for rambling lol. I think I needed to get that off my chest.)

 

[MindOverMatter]

I fully understand where you are coming from @Syb. No rambling at all.

It is not easy, by no means, and it is not easy for our surroundings to understand. It doesn't take much for me, on a bad day, to looe my temper over a lot of annoying sounds and so on.

I don't do vacuuming any more (my wife does). It makes my tinnitus react, but I believe there is an obvious psychological/mental factor to it as well. But these days I plug my ears to the sound, or move to another room.

Where are you situated in the world?

 

[Syb]

I don't do vacuuming any more (my wife does). It makes my tinnitus react, but I believe there is an obvious psychological/mental factor to it as well.

This! I also strongly believe there's a psychological aspect to my own reactivity as sometimes when I get too focused on something, I don't immediately notice the sound of my partner's PC fan when he boots his PC and it doesn't bother me until I notice it... I don't know if I'm making any sense? It's almost as if my brain is selecting which sounds are safe and which ones aren't. The shower is super loud but doesn't spike me — heck, I now shower twice a day now since it drowns out & suppresses my tinnitus a little afterwards. I also took the subway twice (wearing earplugs) since this reactivity thing started — the first time, it didn't spike my tinnitus; the second time, it got so bad I took a tranquilizer when I got home.

I just can't make sense of my situation and I think that's one of the worst things for me. Not understanding the 'rules' yet. Plus having a different sound every day, different level of sensitivity every day... Ugh. I'm considering going to a another audiologist for a 2nd opinion... just in case my audiologist missed something. I don't know. I'm a little desperate. I was going to book an appointment with one of the best audiologists in my city but I noped out when the secretary told me it would cost me $400 for 2 hours. I really don't have that kind of money right now — and even if I did, $400 (CAD) for an appointment seems a bit ridiculous considering my other audio appointment cost me $75...

And to answer your question, I'm in Montreal, Canada. I also happen to have crap insurance so none of my specialists appointments (audiologist, acupuncture, osteopathy, psychotherapy) are covered. RIP savings.

I hope you live somewhere that has good healthcare or that you have good insurance...!

 

[Brendon]

Have you checked out your cervical spine?

Getting suppression from a hot shower makes me think muscles are being tight around damaged or out-of-alignment vertebrae.

I have the same symptoms as you, and my C1 and C2 are out of alignment after lifting some heavy stuff. Being getting things realigned and it's helped some so far. Although each time he works on me my muscles tighten up again (which is typical) and ringing is a little worse for a day after. But overall I have more days that are quieter. Also massage on my neck/shoulders helps me a ton.

 

[Syb]

@Brendon, hey, that's an interesting observation! I did a CT scan of my head (well, mastoid process, technically, but I'm guessing it'll show the beginning of my C spine as well?) three weeks ago and I'm still waiting for the results. If there are no comments on the state of my C spine, I was going to ask my doctor to investigate that too. It's definitely not out of the question — both my parents have C spine & neck issues, and my posture is terrible so I wouldn't be surprised.

What kind of physical therapist are you seeing?

My osteopath seemed more interested in my C5-C6 during our first appointment, but I'll bring up my concerns about C1-C2 as well as I've had pain in the occipital area for years. Plus the acupuncturist said she felt a lot of tension in most of my C spine, so...

I have been working on stretching and strengthening my neck muscles for the past 3 weeks and while I often get spikes afterwards, I really think those exercises are the reason I'm finally waking up with near silence (only for a few minutes, but still, it's a slight improvement).

I'm happy to hear that you seem to be getting some relief & seeing improvements by working on your C spine... That's amazing. Gives me a little hope, too. Thanks for sharing! Feel free to elaborate more, too — it's so nice to be able to talk with people who basically experience the same weird things as me...! I feel a little less isolated and misunderstood.

 

[MindOverMatter]

@Syb, it's quite a puzzle, but we need to try stay calm, and keep carry on. With time, it do get better, given we take logical precautions, and stabilize the psychological response towards it.

I am lucky, considering healthcare, living in Norway. I do go regularly to counselling /therapy through a skilled audio educator/therapist, and get it all covered. I have a new hearing aid with audio therapy that do help me from time to time. I wear them mainly in the evening when in quite surroundings. I have a "cookie bite" audiogram, so mid-frequencies hearing loss. I was told by my ENT it is genetic. I have very good (100%) hearing in the higher frequencies.

 

[Aaron91]

This is par for the course with tinnitus. Everyone's tinnitus will react to some sounds more than others. That doesn't mean you have hyperacusis. Trust me, if you had hyperacusis, you'd know and you wouldn't need a doctor to confirm that to you. I'm not downplaying your tinnitus, but hyperacusis is a physiological (not just mental) debilitating symptom. It is like someone putting a knife into your ear. What you are describing is tinnitus that fluctuates depending on what sounds you expose it to. There is no explanation for why some sounds cause your tinnitus to become louder than others. Tinnitus pathology is still poorly understood, but in most cases it has to do with a lack of input to the brain. Your brain is trying to make sense of the sounds it still hears, so it's obviously going to react differently to some sounds depending on where you have hearing loss (even if your hearing loss is not noticeable).

 

[MindOverMatter]

Yes, you are correct @Aaron91.

But you can have hyperacusis without the pain as well. There are different categories of hyperacusis. I also believe that reactivity/reactive tinnitus is a subset of hyperacusis/related to hyperacusis.

 

[Syb]

@MindOverMatter, it's certainly how it feels to me anyway. I can't even listen to soft music a a low volume (under 30%) without slowly increasing my tinnitus.

I'm not a musician, but music means everything to me. I usually always have music playing in the background, always at a reasonable volume because I've always been 'sound sensitive' (loud sounds have always made me uncomfortable, maybe it's caused by my hearing loss or recruitment?), so I know I listen to music at safe volumes. Or used to, anyway. Now I can't without increasing my tinnitus. It depresses me so damn much.

I also love to watch movies, Netflix, play videogames... Can't do any of that with volume unless it's at the bare minimum. It's so frustrating. I'm generally a very 'auditive' person so I feel like as the things I love the most are now inaccessible.

I've had tinnitus all my life and I've never struggled with sounds. My audiologist said having tinnitus shouldn't make me THIS much sound sensitive, especially without hyperacusis. So I don't get it. While I concede there might be a psychological part in this, it can't possibly all be psychosomatic, can it? Even when I'm feeling calm and confident, I try to give music another shot and within minutes it basically makes my tinnitus unbearable.

So yeah, I'm so confused. And frustrated. And depressed. Spent most of last night crying over a big spike and feeling very suicidal. Needed two tranquilizers because none of my usual tricks helped me calm down.

Wish habituation would start working its magic a little faster. Not sure if there's anything I can do to speed up that process but it needs to happen asap. My life is falling apart slowly and it feels as though all I can do is sit and watch it happen. :'(

 

[MindOverMatter]

@Syb, I know the feeling... I've been through the mindset you are in now myself, and sometimes I fall back into it for a short period. But I keep reminding myself it will get better. If I drown myself in negativity, it does get worse - in my experience.

Stay strong, you will get through.Hope you have good support around you, and someone to speak to about your issues?

 

[Syb]

@SybStay strong, you will get through.Hope you have good support around you, and someone to speak to about your issues?

More or less. My family doesn't understand — my dad has mild tinnitus that doesn't bother him so he thinks mine is no big deal; my mom isn't a very emphatic person; my sis told me 'tons of people have tinnitus and no one makes a big deal about it like you do'... so yeah.

My friends don't really get it either... I got the 'oh yeah, I have tinnitus too sometimes it's pretty annoying!'

My partner also has moderate tinnitus but he habituated really fast and it never really bothered him. It's a pure tone, unchanging except in volume from time to time. He's also very good at ignoring things that bother him while I'm the opposite, especially when it comes to sound. He understands my struggle to an extent and does what he can to support me but he's also not a 'feeler' nor a very empathic person — he's a problem solver. But some parts of this condition aren't as simple as 'don't think about it' or 'do something to distract yourself'. Sometimes he makes it seem so simple or easy to deal with that it makes me angry lol. I wish it were that easy.

So... my support system is very average. My therapist calls me 15 minutes once a month just for a quick follow up to make sure I'm hanging in there until she can finally start seeing me again.

I just find that it's really hard to navigate this whole mess on my own and constantly feel either misunderstood or dismissed. I often get the impression that my close ones think I'm not trying hard enough to get my life back on track when I'm constantly doing my absolute best with the very limited resources (mental or otherwise) I have.

I need to be looking for a full time job as soon as possible... during a pandemic, in a province / country that can't really get its shit together either COVID-19-wise. I can't possibly fathom working 40 hours a week outside of home and taking public transit twice a day when simply going grocery shopping for 30 minutes is sometimes enough to ruin my day lol. This is nuts.

Trying to stay positive but it's so hard when I can't see a way out...!

I don't know how you're holding up but I admire your strength! You're very brave! Props to you.

 

[Stacken77]

I'm going through a time with pretty bad hyperacusis without pain. Sudden sounds startles me and causes discomfort, but no lasting pain. I got hyperacusis initially after onset but it improved significantly over the course of 3 months. Now, because of anxiety, I have sound deprived myself for about a month and my tolerances have dropped badly, coincidentally my reactivity have increased a lot.

[...] I also believe that reactivity/reactive tinnitus is a subset of hyperacusis/related to hyperacusis.

I would have to agree with this, I do believe it at least is tied to "sound sensitivity" which may manifest in different ways. Probably a subset of hyperacusis.

@MindOverMatter - have you seen improvements in reactivity as your hyperacusis has improved? Have you found sound therapy beneficial in this regard?

 

[MindOverMatter]

@Stacken77, I do have more better days than I used to. Some days I get the feeling: "Finally I'm back to baseline" / "I have my life back!" And when I have a good day I remember telling myself that life is a gift! And on a bad day, I try to remember the better days, and that there will be ups and downs. Sometimes without any explanation or particular reason.

The reactivity changes with progression in regards to hyperacusis, yes. That's my experience. To me, it seems obvious that reactivity and sound sensitivity is linked to each other.

Sound therapy, i.e. feeding the brain with sound signals that you can positively connect to, works for me. I listen to classical music at a very low volume in the car, I watch TV at low volume, and I use pink noise sound therapy through my hearing aids at at very low volume on a daily basis. I never mask.

The therapy sound should blend in such a matter that after some time you really do not notice it. I always hear tinnitus above whatever I listen to. You can't escape from tinnitus, but I believe you can, eventually, escape from negative reactions towards the phantom sounds.

 

[Syb]

@MindOverMatter, so I just went to my 2nd osteopathy treatment...

I'm not sure how to describe what he did other than a lot of cranial / cranial sacral therapy... and some manipulations of my arm... but I think it did something.

I went in with tinnitus being 3/10 in my left ear, 2/10 in my right (I consider this a good day, btw) and left with tinnitus being slightly reduced in both ears. I hardly have any tinnitus in my right ear. Mostly just a bit of reactivity in both ears.

So we might be onto something...? Going back this Saturday morning, with acupuncture this Wednesday. I'll let you know if it keeps improving?

Although there's still the cursed MRI appointment on Thursday and I still haven't made up my mind about going. Part of me wants to go just in case they see something wrong with my jaw or C-spine that could be helpful... On the other hand I'm very apprehensive of a potential spike & becoming even more sensitive.

I exposed myself to "too much" sound on last Friday night (some classic music) and by the time I was ready to go to bed, my ears were SCREAMING and super reactive + distortions. I'm scared of what the MRI might do to my ears. TBD.

That night I kind of had a meltdown and cried my heart out and I've been feeling better since. I've decided I'm going to... tolerate the tinnitus and try to just... let it be there and do its thing. Stop fighting it. And focus on something else. I've been reading about neuroplasticity this weekend and for now I think I'll try to resort to that and hope it at least improves my mindset. I need to let go a bit before I lose my mind.

So yeah. At least it looks like there really is something going on with my neck or spine so. That's potentially good news. I'm... cautiously optimistic.

I'll update this again next Saturday.

Hope all is well. Take care until then.

 

[MindOverMatter]

@Syb, interesting info in regards to osteopathy, and possibly great news for you if this could be a "game changer". I might have to look more into this myself after the restrictions loosen up.

Anyways, what's most important is what you stated yourself: Stop fighting it! The less attention you possibly manage to give tinnitus, the less intrusive it will become. Neuroplasticity is such an interesting topic. The brain works in mysteries ways. I just bought a book written by Joey Remenyi, about tinnitus and neuroplasticity, which I will be starting on anytime soon.

Take care, and do update us on your progress.

 

[Syb]

@SybThe brain works in mysteries ways. I just bought a book written by Joey Remenyi, about tinnitus and neuroplasticity, which I will be starting on anytime soon.

What the heck. I bought it as well on Kindle two days ago! I like to watch the YouTube channel "Therapy in a Nutshell" and stumbled upon one of their videos where the author was invited.

I know that a lot of people on here consider her to be a "snake oilist" — to be frank, she might be, but I'm still interested in reading about the connection between neuroplasticity and tinnitus, so I thought... it's just $10, might as well give it a shot.

Four hours after my treatment, my "somatic" tinnitus is reduced to a 1/10, not intrusive at all, and less reactive. It's only annoying if I plug my ears. Is it a coincidence that the volume is reducing after the treatment? Maybe. Time will tell... But damn, that feels good. My old hearing loss tinnitus is still its usual 2-3/10 but the fact that I can hear it so clearly again after months is such a relief, no matter how long it lasts. Small victory.

Now I've given that damn tinnitus enough attention for today so... moving on.

Talk to you later! Take care.

 

[Syb]

@MindOverMatter, hope you're doing okay. Not much to add since last time... other than my osteopath noticed that my C1 vertebrae seems to be (I believe it's what he said, although I can't really make sense of it), shifted a bit to the left? Coincidentally, that's the side my tinnitus is louder, and also the side of my occipital neuralgia. He did a manipulation that gave me a little relief on the spot — my spine felt a bit stretched, in a good way? — but two days later, my tinnitus was back to screaming so. Not sure how helpful osteopathy is... Hard to say.

Still waiting on the CT scan results (for my mastoid process). I did the brain MRI last week; waiting for the results (in a couple of weeks). Problem is, I wasn't sent to do an MRI for my neck so I hope they won't overlook my C-spine in the process...

That's about it for now.

Still slowly losing my mind and trying to pretend my life is normal...

 

[MindOverMatter]

@Syb, thanks for the update regarding your experiences with osteopathy so far. I'm not having my best day today. Ear fullness and temporary, elevated reactive tinnitus.

I will do some self massage and stretching tonight, and try to calm down - combined with some deep breathing.

Tomorrow will be better - for both of us!

 

[Nics2drescue]

I'm the same as you. When I lie down (or it used to be like that, I'm currently going through a really bad spike), my tinnitus calms down. As soon as I get up out of bed, boom, the hissing and ringing starts and stays that way for the entire day.

What would a physical therapist do?

 

[Syb]

What would a physical therapist do?

I mean, it depends on the cause of the tinnitus...

In my case, for example, it's possible that it's either an issue with the muscles and nerves in my neck and occipital area. Or it might be cervical spine instability. A physiotherapist — or another therapist, like a chiro, for example — could help me stretch & strengthen the muscles at fault, or realign my spine.

Different types of practitioners can help with neck and jaw issues (which, from my understanding, often cause somatic tinnitus), so I guess it's just a matter of finding which approach works best for you. :/

 

[Keith Handy]

@Syb - I just read through all of your posts because I realized how similar your overall experience has been to mine so far. I've 99% ruled out acoustic trauma at this point - I've always listened to music at a much lower volume than a lot of people I know. And at this point, loud music sounds good to me if I walk past a speaker, although I won't stand there for more than a moment. But what I really miss is being able to experience the full dynamic range, and hear quiet stuff without all the hissing overlaying it.

Mine started in late November. I had an MRI, they only found mild mastoiditis on one side. Does that mean it was caused by an infection? The ENT doesn't seem to think it's relevant.

Anyway, keep us updated, I'll be particularly interested in how things go for you because of the similarities.

 

[Syb]

Anyway, keep us updated, I'll be particularly interested in how things go for you because of the similarities.

Hey! I'm about to head off to bed, but same, I'm interested in knowing more about your situation as well! Feel free to write more — or link me to one of your threads if you'd like!

Also SAME regarding music. I just said "f it" an hour ago and listened to some piano even though I knew it would probably spike me (I don't think it really did, though?) and while my tinnitus tried to compete with it, I was sort of able to ignore it for a little while and sort of enjoy it. Tiny victory.

(How does mastoiditis even happen btw? I know my ENT suspected that, among other things, but I forgot to ask her how inflammation even happens in that area...)

 

[Guywithapug]

But what I really miss is being able to experience the full dynamic range, and hear quiet stuff without all the hissing overlaying it.

This.

While I'm grateful I no longer have a piercing pure tone, this reactive hissing overlay to certain sounds really sucks. Dogs claws on my hardwood floor, any plastic bags crinkling and water rushing make my hissing tinnitus louder.

This is all in addition to a baseline hiss that varies in loudness from day to day, although, I've been lucky to have some great days where I almost hear nothing but some mild reactivity... so blissful.

I also notice that if I take acetaminophen, later on or the next day my hiss will be dampened.

How are you fairing these days @Keith Handy? Have you made any progress since onset?

 

[Keith Handy]

How are you fairing these days @Keith Handy? Have you made any progress since onset?

It has certainly "evolved" in some way. February was the worst. No more hallucinatory loops or echoes, and the world doesn't sound like a nightmarish carnival in a horror movie. It's mostly ultra-high hissing that gets louder when I exert physical or mental energy, and very slight and intermittent low resonances (barely heard them today except a little after work). Real world sound also seems to get clearer ("crisper" is the word I like) than it was in February, but it waxes and wanes a little.

Still too unpredictable to even think of habituation.

 

[Syb]

I also notice that if I take acetaminophen, later on or the next day my hiss will be dampened.

Same here. This also happens with a few other medication that reduce pain and inflammation. I spent last week using Voltaren gel extra strength twice a day on my neck & traps and had some of my best ear days so far.

It's mostly ultra-high hissing that gets louder when I exert physical or mental energy

And same here. I even have a specific tone in my left ear that I only hear when I experience pain / inflammation, or while stretching the left side of my neck. It's really weird.

 

[Guywithapug]

Same here. This also happens with a few other medication that reduce pain and inflammation. I spent last week using Voltaren gel extra strength twice a day on my neck & traps and had some of my best ear days so far.

I wonder what is the reason for this, I know Acetaminophen doesn't have anti-inflammatory properties but may block the pain signal associated with auditory inflammation, hence the dampening effect perhaps.

Just a theory but like I said, I consulted all mighty Google and didn't find anything relating to tinnitus relief associated with acetaminophen, only articles mentioning its minor ototoxicity.

 

[Guywithapug]

It has certainly "evolved" in some way. February was the worst. No more hallucinatory loops or echoes, and the world doesn't sound like a nightmarish carnival in a horror movie. It's mostly ultra-high hissing that gets louder when I exert physical or mental energy, and very slight and intermittent low resonances (barely heard them today except a little after work). Real world sound also seems to get clearer ("crisper" is the word I like) than it was in February, but it waxes and wanes a little.

Still too unpredictable to even think of habituation.

I wonder what we did in our life/previous life to deserve BS like this...