Experiencing Palinacousis, Reactive Tinnitus, TTTS, and ETD — Any Link Between All of This?

I developed hyperacusis (loudness) and sound reactive tinnitus, along with mild TTTS, 11 weeks ago after microsuction.

Unfortunately, after a few noise-related setbacks, my tinnitus is only getting worse (despite my very best efforts to keep loud noises at bay and never leaving home without wearing earplugs). I'm pretty much homebound now, and some days bedbound.

Within the past week I have also now developed both ETD and palinacousis. I hear crunching and crackling in my ears whilst swallowing and I am literally hearing a song repeat after listening to it long after it's finished.

If this was all I could hear, then so be it, but I have 6-7 tone multi-tonal loud intense severe tinnitus, as well as vibratory tinnitus (which I got after hand was placed on top of a dishwasher whilst running even whilst double protected). I can 'feel' the tinnitus across my head and nose as well as hear it.

It's all just so intense.

I am literally spiraling downwards fast. The first 9 weeks were about trying to cure it, then 2 weeks of wondering how I can just get through the day to work online in a quiet environment - and now feel I'm in to survival mode.

Unfortunately, each worsening in the past 11 weeks I can attribute to a specific noise trauma (clicking of plate in dishwasher causing ears to scream, audiologist playing white noise during a hearing test, dirt bike revving in an underground car park whilst double plugged etc...).

I hate comparing to anyone else as I know everyone is so struggling, but I just don't know how I got so bad so quickly and not finding many with as many concurrent issues.

Has anyone else experienced such conditions all together, and any thoughts on the linking of all of this at the same time?

 

I’m sorry to hear about all this!

If you are in a state of severe anxiety and hyperawareness, I believe it can cause at least some of the symptoms you are experiencing (palinacousis and that you «feel» the tinnitus), and probably exacerbate the others.

 

I'll be honest and say that (for some reason) I haven't felt anxious or panic throughout this experience (aside from during the further noise traumas, as I was doing everything I could to protect).

Recent heart rate checks and blood pressure results show everything is quite normal. I had a qEEG recently and apart from the results showing my body is under stress (naturally), I certainly wouldn't say it's in the fight or flight stage. The qEEG didn't show much in the way of anxiety.

At least not consciously, but subconsciously perhaps.

I'm down, absolutely, as I can't do anything right now. But I'm not in a panic or anxious state. I'm trying to wait out the bad days to get to the better days, but it's very tough.

In fact, sometimes I wish I were in that state as I'd at least feel there was perhaps a 'better' to be had if I could come down from it (if that makes sense).

I've had tinnitus for 45 years, and, according to my audiologist, have probably never experienced or heard silence. Maybe that primed me slightly but what is going right now though is of course a different level. It's 100 levels above.

Being the analyst I am, I'm still in that 'trying to be pragmatical' stage.

Unfortunately, these are real experiences from someone (somehow through the madness) still trying to stay relatively calm and composed.

Dealing with this compounding onslaught though is not a life.

 

No anxiety when suddenly experiencing all of this - is nothing but impressive.

I have a high-pitch hiss in my left ear, that is constantly worsening, so that I now hear it over almost everything - mild compared to your struggles, but it has brought me to my knees with severe anxiety, depression and made me suicidal for the majority of the last year. If I were reacting a bit more like you, I would probably be somewhat ok.

 

Thanks @Pistolpete - unfortunately I haven't been able to mask mine since the start 11 weeks ago (prior to this I could mask easily for 45 years - as strange as this sounds, I actually miss my old chirping cicada tinnitus as it was there since birth).

Unfortunately, despite not really reacting emotionally to it, it doesn't really seem to have had much benefit - the added noise traumas on top haven't helped, and I kick myself probably more from those than the microsuction.

 

Makes a lot of sense. It’s been a year for me - and the anxiety, panic, depression and suicidal thoughts have more or less been with me ever since. I keep telling myself I can’t evaluate how (if) I will be able to live with this until the depression and anxiety is gone, but with constant worsening - that never seems to happen

 

It says in your profile that your tinnitus may have been brought on by stress - and I have to say my most stressful moments so far have been when it worsens, so I know how you feel.

Are you on medication for the stress and anxiety - and have you tried CBT and mindfulness to help calm the body? (I know easier said than done).

There are other treatments such as neuromodulaton that can also help with tinnitus symptoms as well as a stressed body. Have you considered these?

 

SSRI and Remeron. The SSRI really does nothing, while Remeron might be helping me fall asleep. However, I suspect the Remeron is causing some vivid dreams and nightmares which often wakes me up (with crazy loud tinnitus). The first months I used a benzo, but my intake got completely out of control and luckily I was able to withdraw without any problems. If I had any of that now, there’s no way I would be able to only take it every now and then.

I’ve tried CBT, MCT and some mindfulnes and meditation. But I feel it’s really hard to benefit from any of these interventions when in a state of desperation. I need instant relief - and when I don’t get it, it kind of feeds the hopelessness. «Nothing works... I’m doomed... I’m a lost case» etc.

I’ve tried Lenire. For six weeks. I got worse so I quit it. But I think I would have gotten worse anyhow. I’ve been thinking about starting using it again - but again it’s just desperation and frankly I get anxious just by looking at the Lenire unit

 

Hey @DeanD, I am so sorry to read all of this. I give you so much credit for trying to stay calm. But I completely understand the downward spiral of depression and survival mode.

Do you have any good contacts near you with functional medicine or homeopathic medicine? If you go take a look at @Marin’s latest thread and how she willed her way out of her severe state; homeopathic medicine and going carnivore diet helped her immensely. It took time, but she has a lot of good information. I myself have an appointment set up with a functional medicine doctor next week and I have a TRT eval scheduled in February. I believe our brains are in such a heightened state that it takes time and multi direction approach. It’s just so scary that we have no guidance on this, so we literally have to make the decisions ourselves.

 

Hi @DeanD,

I'm so sorry to read that you're yet another victim of microsuction. In 2016 this ridiculous procedure also caused intensive and serious harm to my hearing resulting in debilitating tinnitus, hyperacusis, TTTS etc.

I can't believe that ENTs and audiologists are still practicing microsuction, and getting away with damaging people's hearing/lives through it. It's just wrong.

 

Hey @ErikaS - thank you for your kind words.

I'm not a million miles away from London so I do have lots of options available. I haven't seen Marin's posts but will check them out. I'm open to try most things.

I am a believer that a small 5%-10% improvement in each of a number of treatments can really add up.

I have the option of neuromodulation in February, and I'm due to speak to quite a well regarded hyperacusis, tinnitus and TRT specialist next week - I'm just trying to get there.

Like I've seen you mention in your other posts, if only the reactivity would cease and we could maintain some level of stability, it would make such a difference.

For someone to have tinnitus, head vibrations, brain zaps, hyperacusis, TTTS, ETD and palinacousis within 11 weeks - whilst also having had mild tinnitus and short bursts or vertigo or seizure like symptoms before the microsuction - feels like a lot without there being something more underlying.

I'm just having a challenge through all the research I am doing to join the dots, if there are any to join.

 

Have they ruled out cochlear hydrops or Meniere's disease? Just asking with your history of vertigo. If you follow up with ENT or neurologist, you could ask them about medication like Keppra (anti seizure) that others have had help them with hyperacusis. The only other thing I’m thinking you could ask to try is Low-Dose Naltrexone (LDN), quite a few have had success with this who have had an immune system response causing their issues.

Glad you have those appointments coming up. I hope this crap slows down for you. Do you have anything like Ativan or another as needed to get you to next week? I take 0.25mg of Ativan at night and it does have a slight improving effect on my tinnitus and it does calm me down. I know benzos get such a bad rap, but many of the main members used them early on and have had success weaning off or stopping and are doing great. I have made sure not to go above a very small dose so my wean off won’t be dramatic.

 

To be honest, the medical system I have at hand is struggling with the basic understanding of tinnitus. I don't think it is Meniere's as dizziness is not a prevailing symptom. I also ruled our cochlear hydrops as I am not experiencing any particular sudden deafness.

I am considering a trip to my GP and ask for a neurologist appointment. I was quoted a 42 week wait time recently when my GP tried to enquire about an ENT visit at the local hospital, so I booked privately. I know I can't wait that long on the NHS.

I'm taking 10 mg of Propranolol (which I decreased from 30 mg a month ago), and 15 mg of Mirtazapine. These unfortunately have no effect on my tinnitus. I'm also taking NAC and Magnesium supplements, but have been doing this for 6 weeks and I haven't noticed much difference, plus they failed to protect during further setbacks.

I have Tru-Niagen Nicotinamide Riboside, as I heard this is good to take after noise exposure, but also read it slows down the heart, which Mirtazapine also does, and was worried about a conflict so I haven't taken any.

I guess my biggest challenge right now is the vibrations I have in my skull. There is one particular tinnitus tone I got recently (dirt bike in underground car park when double plugged) where the piercing strength and pitch literally hits my skull. This one isn't even loud but it's piercing. It feels like having the skull squeezed from the inside. My girlfriend actually felt my skull vibrating recently when I asked her to check.

My good days now are worse than my bad days just a week ago (before the bike exposure).

All of the sounds, and this sensation, are giving my brain sensory overload at times even in absolute silence - and I can feel my brain almost wanting to switch off. I have had to shake my head a couple of times in the past couple of weeks to keep from what felt like going in to a mini-seizure, vertigo or passing out. Not fun

 

I'm sorry to bump this post but in additional to the severe reactive tinnitus, hyperacusis, TTTS, ETD and Palinacousis - I am now experiencing over sensitivity to my eyes.

I can't look at a computer screen without blue blocking glasses, as well as the eye comfort levels turned up on my monitor to 70% (making most of the screen look amber). It just looks too bright. Plus more ghosting than usual when looking at anything remotely bright.

My ears have been bad for years, but my eyesight has always been very good - and very good eyesight runs in my family.

I now feel in a bit of an uncontrollable mess.

I never had an issue before the microsuction. Health wise I was good, no anxiety, no depression and I was in a pretty good place. Stress certainly played no part in bringing all this on for me.

I haven't left my home in 3 weeks, and even my GP believes I should stay at home now with the continued worsening and how bad things have got.

She is urgently trying to push forward an appointment with an ENT (as something seemed to change with my hearing 2 weeks ago after catching my hand on a plastic indoor clothes hanger creating a 60 dB thud at most, which resulted in the start of sensation in my eyes, and making my tinnitus louder with a vibratory feeling as well making it sound more 'tinny').

She is also trying to rush me an urgent appointment with a neurologist re the Palinacousis, and ophthalmologist because of my eyes.

I have appointments coming up with Brai3n and also Myriam Westcott re the hyperacusis and TTTS.

Although I have been able to fall asleep with medication, my tinnitus is so loud that each night for the past 4 nights I hear the tinnitus in my dreams and its waking me up to a huge massive spike just an hour later, not too dissimilar to a smoke alarm going off. Not just by way of sound, but also vibrations and a piercing feeling. I am then unable to return to sleep properly.

4 nights this week I have had just 1 hour sleep a night.

I have just been switched from Mirtazapine because of exploding head syndrome, to Zopiclone to try and allow me to sleep which is my GP's first aim. The first night the Zopiclone knocked me out (probably because of 3 hours sleep in 3 days) and I slept for about 10 hours, which was nice, but last night after taking it I woke after 1.5 hours again to screaming tinnitus.

For the first 9 weeks or so since the microsuction I slept a good 8-9 hours every night despite severe intrusive tinnitus, unfortunately 2 acoustic 'traumas' the week before Christmas made a severe situation almost unliveable.

I almost lived in earplugs at the very start- whereas now I can't bear earplugs on for more than 5-10 minutes due to how severe the force of the tinnitus is behind them.

Right now I am living in near silence (without earplugs) but every day is a challenge to keep following my own mantra of just trying to put one foot in front of the other.

I feel lost, a bit of a mess and no idea what to do next.

 

Sorry to hear about your experience. I have had a very similar experience with all these symptoms and worsening tinnitus from normal sounds for the last 4-5 months. This is after having more stable tinnitus for 7 years (although it was always worsening slowly month over month and year over year). While I considered myself habituated to my normal tinnitus, this quickly worsening tinnitus and severe hyperacusis has changed my life. I’ve been housebound for months now. Any minor noise exposure leaves me with a massive spike which settles into a higher baseline. It’s tough how primitive the science is on this. I’ve heard I should expose myself to more sound and also I should isolate even more. I try to do what I can based on feel and how my ears react. Noise is certainly much worse than silence in terms of how quickly this progresses. I pray for a miracle of healing, but objectively it feels like its snowballing. As sounds damages my auditory system, it takes less sound to damage the next time. A truly vicious cycle.

Now that the venting is out of the way, what can we do? I use the app “Oto” which has CBT exercises for tinnitus and also “Curable” which is more generally for chronic pain. I also have taken up drawing, online chess, and am watching shows on low level volume to distract. I’m hopeful that if I hold on strong, things will eventually reverse on their own. Or something like the Susan Shore device or a tinnitus drug will eventually lessen the load.

 

My tinnitus has increased even more over the past couple of days, possibly from having a couple friends over with conversation. I was enjoying myself a lot and wasn’t thinking about noise but after they left, it was a noticeable notch up and has stayed that way. This condition of worsening tinnitus makes no sense and I feel lost without answers too.

 

Sorry you're also going through this.

I have never really got my head around the whole 'reactive tinnitus is hyperacusis', as it suggests that tinnitus will not react (or potentially not worsen) once the hyperacusis has gone away - which it still does

It feels to me that both our hyperacusis are in too sensitive a state, and this heightened sensitivity has a greater effect on the governing power of the tinnitus - mini acoustic traumas you could say at volumes those without hyperacusis wouldn't flinch at.

I do believe hyperacusis can make tinnitus react, and can also cause it to increase. I also think it can sensitise as system by up to 80%, which may be causing our issue.

It seems the solution is to start to desensitise it at its peak level. Controlled way (TV if possible). Volume 1 one day, volume 2 the next etc. Just 1 dB change a day. If TV is not possible, I've also found the auditory delights of Stephen Fry's Sherlock Holmes on Audible to be good. His deep calming tone, and 59 hours worth of content, can be a good sound source.

I don't want to use sound therapy at night yet, as I feel in our cases rest is still needed.

I like your ideas of online chess, and used to draw and paint myself. I also build websites, which I have been trying to distract myself with, if it weren't for these eye sensitivities.

I hate to add sounds in but I've been living in silence for 3 weeks with no change.

It would be a great goal for January to feel stronger and get out for a walk. For an hour, double plugged in nature, to say we can.

Hopefully the 1 dB increases will not present too many spikes.

My goal is by the end of the year to be able to take a flight if possible.

I want to work on a month by month plan to get there.

It will take the right attitude, right health plan, CBT, supplement stack and eating good.

I have watched Rocky so many damn times. I can't fight tinnitus but can I hone to its needs while trying to take as much of its energy source away.

Each month a different chance and challenge, and end of month goal.

Every month to be controlled and not foolishly playing with loud noises in some kind of ego trip (you may have to hold me back as I know what I can be like).

I can't fix tinnitus but I can fix elements that interact with tinnitus and hopefully use them to my advantage.

I still plan to spend the next 5 months at home. I have no need to rush out there and let my head be obliterated by noise it clearly isn't ready - but each month a plan.

Until we're finally ready to run up those Rocky Chicago steps for a success story.

 

I love the attitude, I think you’re going to kick its ass with that mentality. I have found it most difficult to not get upset with the inevitable setbacks that will happen in this situation. We can limit them but very difficult to avoid completely, so we have to be ready for those hard days. I agree with using TV at slightly louder volumes (gradually) to increase noise exposure in a controlled way. I’ve also found it difficult to use white noise as it all too easily flares everything up. TV and podcasts have been more comfortable even at higher volumes. The auditory system is strange.

 

Zopiclone kicks in fast and will help you fall asleep, but not stay asleep.

 

I've found that. First night it knocked me out for 10 hours (3 nights of just 1 hour sleep per night beforehand), but for the past three nights - as you say, it knocks you out but I woke up after just 1.5 hours each night to screaming tinnitus. Couldn't then get back to sleep.

 

This sounds exactly like mine, especially the songs repeating in my head! I can’t remember the song thank god but I remember thinking if I was experiencing dementia, but anyways man, it’ll get better in about 6-7 months and you’ll be in a much better place (mentally).

 

Thanks for the reply @Sammy0225 - for me it happens after a song has been played, but it's getting worse and extending to other things like the doorbell, a siren or TV intro theme tune.

I rarely hear sirens where I am, but one I did hear a month ago still pops up from time to time.

I am though hearing a lot of overlapping voices making up at least part of my tinnitus. I've tried searching for similar instances on here but there aren't many.

I can't work out the words, it sounds as if there's a radio on in the next room (which there isn't and definitely in my head), but it's the same vocal pattern repeating - and there's a combination of them.

I put bird song on the Relief app yesterday for 3 seconds and that bird song continued in my head for at least an hour.

I'm starting to think the acoustic shock triggered a bit more than standard tinnitus.

It's getting worse daily (each day louder than the one before after sleep, and I'm living in near silence).

Never had any issues prior to this.

 

I definitely can relate!

First few months I experienced these phantom songs replaying in my head every 3 seconds or if I heard beeps from the phone alarm, it would stay playing in my head for an hour or so. I found all this incredibly troubling because I also had 3-4 tinnitus tones while musical tinnitus did its thing.

 

@Sammy0225, this does sound a lot like palinacousis, as far as I have been able to research with incredibly little information about.

Did you ever get yours checked out by a neurologist or just waited for it to pass?

I think many of my 'tones' are some type of auditory echo.

 

@Theezy, are you seeing any positive changes in the right direction as of yet?

I think the challenge is sometimes less about the volume, and more about the frequency. I guess white noise covers more frequencies so more likely to affect the problem area.

 

I’m having a tough go of it to be honest. I’ve been more on the side of sound isolation due to some initial noise exposures worsening all my symptoms at the beginning of this increase through August/September and October along with noxacusis. It’s been hard for me personally to find the right balance, but I believe it’s probably good to keep a comfortable sound enrichment as you can tolerate without irritation.

I have hope as I know people have made it through severe tinnitus and hyperacusis periods even if it takes a year or so. Hopefully it’s much quicker recovery for us!

 

@Theezy - it's good you have been able to persevere with the sound therapy. It's always a tough call when worsening but if you can get through and still function, then it sounds like it's the right call.

I had a significant worsening last weekend with a truly one in a million chance of happening, it had to be 110 dB plus and happened indoors in the quiet right next to me. Freakish thing that has never happened before and probably never will again, so couldn't even possibly have protected for.

It pushed the volume 10x times what it was overnight, and before then it was 10x tones, severe, reactive and unmaskable. A lot of hope was lost.

I did manage that January goal yesterday of getting out for a walk, wearing earplugs and Peltors. I live near a beach and went for a walk to watch the sunset. As beautiful as it was, I struggled to enjoy it.

I need to choose a February goal, but that last huge setback has taken a lot of out me as I'm near bedbound now. Maybe it's time to try and keep my work from home job going (I have the most amazing job, and an amazing company who are being brilliant and so supportive with me at the moment - but I struggled to hear a doctor on a phone call yesterday because of how loud the tinnitus is now).

I have had so many different tones come and go (probably 30 in total now overall from low to high pitch, tunes, melodies and distant voices), I struggle to believe all of this is from hearing loss and the brain missing a single frequency.

The brain creating permanent consistent ringing due to a missing frequency, yes, but these situations we seem to have appear to be explained more so by an acoustic shock that hasn't settled down.

Each subsequent acoustic 'shock' reverberance adding to the existing sound, increasing the overall volume. It can calm but it can be added to.

Like you, I think any sound that doesn't cause an increase is worthwhile to help desensitize the auditory system and I seriously hope, with my last bit of hope remaining, that the volume can reduce over time if lived in hibernation for a year.

 

I’m really sorry that happened to you last weekend. I know the feeling all too well of having a new increase in baseline. It’s terrifying not knowing if it’s permanent or not. Although my baseline has absolutely been increasing, it at least seems like the day or two after an increase are usually the worst and it settles a little bit (or my brain adjusts over the following days/weeks). I’m also struggling today after cooking last night and thinking I could handle more sound than I could. Trying to stay strong and positive is truly a challenge when these things happens. I am thinking of you and hope this spike calms down a lot for you. I hope all of us experiencing this can somehow find answers and relief from this condition soon.