From 0 to Debilitating Tinnitus in 2 Months

[JaneDo]

@Matchbox, thanks for getting back to me.

Well I am going through a lot of the noises and other ear problems as well. Hopefully it will get better with time.

Please keep us updated of your progress.

 

[Matchbox]

I'm trying Oxcarbazepine this weekend as I'm certain the palinacousis is connected.

Cross your fingers and toes.

 

[Matchbox]

Nothing to report, still fucking awful distortions, tinnitus and attempting to work remotely.

Hearing loud things now causes face numbness on the right side.

Yawning still causes twang sounds in my ears when the ear drums flex, both ears.

Didn't try the sodium channel blocker yet because if I get worse Ill miss work and be fired.

 

[Tau]

Yawning causes my right ear to scream at something like 60-70 dB (the one where I have multiple Morse code beeps that get louder when I lie down). I suspect it might be Tensor Tympani muscle, but who knows at this point.

Hearing distortions over external sounds is, I think, hyperacusis + recruitment due to hearing loss. I experience this, too, with any broadband noise causing beeps and hums. Like rustling bedsheets, so I wake up when I shuffle in bed. It's hell.

Hang in there. Are you considering stem cells at all? Or HPN-07?

 

[Jerad]

@Matchbox, did the light saber sounds go away?

I am having those really bad right now. It started 6 weeks ago after listening to headphones at low volume for a couple hours each day (5 days of use). I was trying to treat my hyperacusis with pink noise and was told to use the open ear headphones, and now regret it. I had mild light saber sounds (1 out of 10) prior to the headphones.

Well it ramped them up in intensity.

Now, sometimes they're a 2 out of 10 (not so bad), but sometimes they're around a 4 or 5, which is very intrusive due to the pulsating nature of the sound; sometimes they're an 8 or 9, which gets insane. It also morphs into what sounds like a car engine idling or someone beating a drum. When it's super intense, it's roaring with a drumbeat effect. If I'm in a room that's 40 dB, I can't hear the sound even at its worst. It totally masks it.

I thought about trying to get Prednisone and even asked my ENT a couple weeks ago, but he didn't think it would help. I am worried that Prednisone could make it even worse.

The problem has been mostly the same for the last 6 weeks with some good days, but it changes by the hour. It can be a 4 right now and be an 8 the next hour. I'm worried and not sure if this will improve over time. It's very reactive with my hyperacusis and all. I get distortions and sounds overplayed over other sound sometimes. I'm hoping that the light saber sounds will improve, too, once the hyperacusis is stable. Not sure what to expect, though. It is scary.

 

[ZFire]

@Matchbox, did the light saber sounds go away?

I am having those really bad right now. It started 6 weeks ago after listening to headphones at low volume for a couple hours each day (5 days of use). I was trying to treat my hyperacusis with pink noise and was told to use the open ear headphones, and now regret it. I had mild light saber sounds (1 out of 10) prior to the headphones.

Well it ramped them up in intensity.

Now, sometimes they're a 2 out of 10 (not so bad), but sometimes they're around a 4 or 5, which is very intrusive due to the pulsating nature of the sound; sometimes they're an 8 or 9, which gets insane. It also morphs into what sounds like a car engine idling or someone beating a drum. When it's super intense, it's roaring with a drumbeat effect. If I'm in a room that's 40 dB, I can't hear the sound even at its worst. It totally masks it.

I thought about trying to get Prednisone and even asked my ENT a couple weeks ago, but he didn't think it would help. I am worried that Prednisone could make it even worse.

The problem has been mostly the same for the last 6 weeks with some good days, but it changes by the hour. It can be a 4 right now and be an 8 the next hour. I'm worried and not sure if this will improve over time. It's very reactive with my hyperacusis and all. I get distortions and sounds overplayed over other sound sometimes. I'm hoping that the light saber sounds will improve, too, once the hyperacusis is stable. Not sure what to expect, though. It is scary.

I have loudness hyperacusis with reactive tinnitus. Back in July, I had the lightsaber buzzing sound as well, but that went away for me. Good chance it will for you too or lessen dramatically.

 

[ZFire]

Nothing to report, still fucking awful distortions, tinnitus and attempting to work remotely.

Hearing loud things now causes face numbness on the right side.

Yawning still causes twang sounds in my ears when the ear drums flex, both ears.

Didn't try the sodium channel blocker yet because if I get worse Ill miss work and be fired.

Similar thing happens to me when I yawn. The tinnitus gets amplified to an excessive level and different tone. I also get random eardrum spasms.

 

[Matchbox]

Please lower your volume.

This is a re-creation of what I hear as a baseline, but specifically during a spike (intense noise or tapping inhibition) (90% in right, some noise in left) it is pretty close to accurate, missing some of the more jittery noises.

The beginning is just "tapping" as a sound effect to start it off, followed by what I more or less actually hear post tapping.

It dies down, but some low level version of this always exists and spikes and can change dramatically. Can't figure out what is going on.

Also attached is what I actually hear (good recreation) in white noise masking (distortions).

If anyone is similar let me know.

 

[Matchbox]

Yawning causes my right ear to scream at something like 60-70 dB (the one where I have multiple Morse code beeps that get louder when I lie down). I suspect it might be Tensor Tympani muscle, but who knows at this point.

Hearing distortions over external sounds is, I think, hyperacusis + recruitment due to hearing loss. I experience this, too, with any broadband noise causing beeps and hums. Like rustling bedsheets, so I wake up when I shuffle in bed. It's hell.

Hang in there. Are you considering stem cells at all? Or HPN-07?

I've been thinking about stem cells if I have no choice, even if it induces neuron growth. Ultimately I have firm beliefs in BDNF injections to save me when they're finally approved. Of course if I worsen by then...

We all seem caught in the middle, aren't we? Too late in time to just give up but too soon to have any real help.

So Dexamethasone shots in your ears did shit all for you hey?

 

[Matchbox]

I have loudness hyperacusis with reactive tinnitus. Back in July, I had the lightsaber buzzing sound as well, but that went away for me. Good chance it will for you too or lessen dramatically.

This has come and gone, thanks ZF.

I've got other fun now, there's a snow speeder or buzzing electronic bee now. Then it was AT-AT blasters before.

Maybe this is where the sound engineer for Star Wars got these effects.

 

[Matchbox]

@Matchbox, did the light saber sounds go away?

I am having those really bad right now. It started 6 weeks ago after listening to headphones at low volume for a couple hours each day (5 days of use). I was trying to treat my hyperacusis with pink noise and was told to use the open ear headphones, and now regret it. I had mild light saber sounds (1 out of 10) prior to the headphones.

Well it ramped them up in intensity.

Now, sometimes they're a 2 out of 10 (not so bad), but sometimes they're around a 4 or 5, which is very intrusive due to the pulsating nature of the sound; sometimes they're an 8 or 9, which gets insane. It also morphs into what sounds like a car engine idling or someone beating a drum. When it's super intense, it's roaring with a drumbeat effect. If I'm in a room that's 40 dB, I can't hear the sound even at its worst. It totally masks it.

I thought about trying to get Prednisone and even asked my ENT a couple weeks ago, but he didn't think it would help. I am worried that Prednisone could make it even worse.

The problem has been mostly the same for the last 6 weeks with some good days, but it changes by the hour. It can be a 4 right now and be an 8 the next hour. I'm worried and not sure if this will improve over time. It's very reactive with my hyperacusis and all. I get distortions and sounds overplayed over other sound sometimes. I'm hoping that the light saber sounds will improve, too, once the hyperacusis is stable. Not sure what to expect, though. It is scary.

You sound like me a bit. Odd that we're getting low freq bullshit noises too. I can attest to someone beating a drum quickly in pulsatile sets, constantly.

I don't know if my lightsaber coincided with noise, what I do know is noise exclusively makes shit worse for me. At its worst if loud enough the world will sound like I'm listening to it through pop rocks post exposure.

I have a feeling it's some kind of synapse issue or excitotoxicity and the ones that are left can't handle the amps (literally being overwhelmed with glutamate from hair cells that are very much alive whereas the nerves are not).

Or. It's hydrops.

The lightsaber was very prominent in white noise starting. Not as much if at all now months later.

If it makes you feel better my noises change a lot... some are very consistent, the lightsaber comes and goes but is not nearly as frequent as it was. It seems to have morphed into shorter faster versions of itself, to the point where it sounds more like a vibrating drum. And yes its volume decreased.

 

[ZFire]

This has come and gone, thanks ZF.

I've got other fun now, there's a snow speeder or buzzing electronic bee now. Then it was AT-AT blasters before.

Maybe this is where the sound engineer for Star Wars got these effects.

I chuckled reading this, but I hate how you are suffering from this nonsense. I really hope some positive breakthrough will happen to you down the line. A guy like you deserves it. You are a breath of knowledge on this board and the way you help newcomers out is commendable AF.

True Warrior.

 

[Laurie1961]

By 5 years in - yawning no longer caused any sound. (My ears were oddly dry too.). Looked up Eustachian tubes - knowing these tubes are normally responsible for ear pop noise when yawning.

I came across and followed a video on how to clear clogged Eustachian tubes by Austin Goh. I can't praise Mr. Goh enough! His exercise looked funny but after two days of trying them, obviously something good was happening. One side relieved in short order but the other took about a week.

I continued the 2 weeks as he advised regularly and then every so often. Yawning sensation went back to normal and the clicks, snaps and tone changes are gone. Now if I could get rid of the shrill tinnitus permanently...

 

[Tau]

So Dexamethasone shots in your ears did shit all for you hey?

It was systemic (intramuscular) Dexamethasone, and nope, nothing.

I got a lovely new pure tone eeee today, probably from walking outside near (not so busy) traffic. Terrific.

 

[Tau]

Ultimately I have firm beliefs in BDNF injections to save me when they're finally approved. Of course if I worsen by then...

I can recreate what Liberman et al. did in their cochlear synaptopathy model (NT-3+polymer matrix). I think that will be my last resort.

 

[Stacken77]

I got a lovely new pure tone eeee today, probably from walking outside near (not so busy) traffic. Terrific.

I'd advise to never walk by traffic without single or double protection. We don't need to hear those sounds, and we should try not to put our health in the hands of other people.

 

[Jerad]

@Matchbox, do you think I'd benefit from Prednisone at this point? I'm 6 weeks in from this new spike or tinnitus. It's really scaring me because it's so intrusive in the way it sounds. It's not a pure tone - it's the constant light saber and car engine and drumbeat. It fluctuates in intensity from 2-3 all the way to 8. But it never gets louder than 37 dB.

I dunno whether Prednisone could help or make matters worse at this point?

 

[ZFire]

@Matchbox, do you think I'd benefit from Prednisone at this point? I'm 6 weeks in from this new spike or tinnitus. It's really scaring me because it's so intrusive in the way it sounds. It's not a pure tone - it's the constant light saber and car engine and drumbeat. It fluctuates in intensity from 2-3 all the way to 8. But it never gets louder than 37 dB.

I dunno whether Prednisone could help or make matters worse at this point?

I can't speak for @Matchbox, but I think I recalled him saying that they helped him tremendously while on them, but then immediately got worse once off them. I think he said it's a gamble. it's main priority is for any sudden hearing loss.

I guess everyone is different with how they handled steroids. For me I took Methylprednisolone 4 weeks after my onset, it's didn't do anything. It gave me terrible side effects like insomnia, and high levels of anxiety. I believe it may have actually changed my tone to a rumbling engine sound .I also had random bouts with hearing distortions after off them. Not sure if this is all connected with the steroids though, but it seemed like it.

For the meantime, I would stick to supplements like NAC, vitamin C, E, Turmeric and wait to see what @Matchbox has to say if this puts you at ease.

 

[Matchbox]

I can't speak for @Matchbox, but I think I recalled him saying that they helped him tremendously while on them, but then immediately got worse once off them. I think he said it's a gamble. it's main priority is for any sudden hearing loss.

I guess everyone is different with how they handled steroids. For me I took Methylprednisolone 4 weeks after my onset, it's didn't do anything. It gave me terrible side effects like insomnia, and high levels of anxiety. I believe it may have actually changed my tone to a rumbling engine sound .I also had random bouts with hearing distortions after off them. Not sure if this is all connected with the steroids though, but it seemed like it.

For the meantime, I would stick to supplements like NAC, vitamin C, E, Turmeric and wait to see what @Matchbox has to say if this puts you at ease.

It stops ringing tinnitus imo. Very well. Very temporarily.

If you taper off too quickly you will get a spike no matter what.

You may also get new noises when you finally finish tapering the next morning if you're unlucky like me.

If you do it, be careful with salt and noise. Both of which seemed to make me much worse on steroids than without (inflammation might actually be providing some protection).

If I heard a noise loudly on steroids guaranfuckingteed it would become a tone that night. Thankfully all of THOSE tones, were temporary and faded over days/weeks post steroids.

My other distortions did not fade. Steroids are hit and miss for distortions. Most of mine "changed" or went on steroids, but post steroids, lol, living nightmare. It seems those changes are at least semi permanent.

One girl with severe distortions had hers clear up for apparently a whole few minutes while on steroids, but she's like me and usually got worse off them. She also got pitch changes in hearing from it (temporary).

MOST people are just fine on steroids for tinnitus, just do some preparation and be vigilant. No taper is too slow.

If a doctor says to take Prednisone for 3-5 days and then quit cold turkey, they are retarded, do not do that.

Be sure you have no active infections going on.

Take Lysine if you have HSV and penicillin if you have chronic infections beforehand.
Steroids risks the infection spreading, which if that's what started your tinnitus congrats you made it worse without preparation. If you're sure you aren't sick this isn't an issue.

 

[Jerad]

@Matchbox, thanks for the info. Do you think it's too late for me to try Prednisone? It's been almost 7 weeks since the incident that spiked my tinnitus - listening to low volume pink noise through headphones. I tried to get Prednisone 2.5 weeks after but my ENT didn't think it'd help. But he also said headphones wouldn't have caused the problem, so...

 

[Matchbox]

@Matchbox, thanks for the info. Do you think it's too late for me to try Prednisone? It's been almost 7 weeks since the incident that spiked my tinnitus - listening to low volume pink noise through headphones. I tried to get Prednisone 2.5 weeks after but my ENT didn't think it'd help. But he also said headphones wouldn't have caused the problem, so...

He sounds like a fucking idiot.

Steroids will help, the consensus is up to 6 weeks out. The fact it helps people over a year later should say something. My ENT was the same, too late for shots when no, it wasn't. He just couldn't be bothered.

That said. Do one course, taper insanely slowly, then don't do it again (at least for 6 months) unless you actually go deaf.

Headphones, no shit, will make it worse.

You will likely get temporary tones while tapering off.

 

[Wrfortiscue]

He sounds like a fucking idiot.

Steroids will help, the consensus is up to 6 weeks out. The fact it helps people over a year later should say something. My ENT was the same, too late for shots when no, it wasn't. He just couldn't be bothered.

That said. Do one course, taper insanely slowly, then don't do it again (at least for 6 months) unless you actually go deaf.

Headphones, no shit, will make it worse.

You will likely get temporary tones while tapering off.

Can you explain why it helps tinnitus temporarily and why some get tones with Prednisone? I found my ears were sensitive to noise while on it.

 

[Matchbox]

Can you explain why it helps tinnitus temporarily and why some get tones with Prednisone? I found my ears were sensitive to noise while on it.

I cannot explain why some people are lucky enough to get worse.

I can say the tones I got on Prednisone were due to more noise exposure whilst on it, and from tapering too quickly/being on it too long at too high a dosing.

If you're gonna be in silence and do a quick blast and proper long taper... I think the majority would be a ok, but all will spike hard tapering off. Seems to be a theme and a temporary one. My tones I gained whilst on it went away. The ones I was treating went away "temporarily".

Prednisone affects the mineral receptors (I don't know in what capacity) as well which is why Im really not fond of it for acoustic trauma when hydrops may already be present (could make them worse, acoustic trauma forms temporary hydrops in mice models, in fact for those studies hypertonic saline solution injected or Lasix both helped the mice considerably recover synapses compared to controls).

Dexamethasone is superior in this respect, having pretty much nil affinity for that receptor, but it is much much stronger.

Keep in mind this is basically high level cortisol so it's literally feeding your brain stress. This may explain the increased acuity of sounds. Again... should be temporary in most of us.

If stress makes tinnitus worse, why use Prednisone? Inflammation and prosurvival of hair cells over neural impact I guess? I do recall it can impact the hippocampal neurons in a negative way (cortisol levels co-relate to anti-survival of those neurons). Physiological stress also does a lot of other things than just raise basal cortisol levels. Prednisone wouldn't likely have this impact as the "stimulus" is missing, and lots of people report steroids helping ultimately for tinnitus/hearing loss.

Those who get tinnitus from stress ironically I doubt Prednisone would be a good idea as it's central tinnitus and adding more synthetic stress isn't great.

 

[Wrfortiscue]

I cannot explain why some people are lucky enough to get worse.

I can say the tones I got on Prednisone were due to more noise exposure whilst on it, and from tapering too quickly/being on it too long at too high a dosing.

If you're gonna be in silence and do a quick blast and proper long taper... I think the majority would be a ok, but all will spike hard tapering off. Seems to be a theme and a temporary one. My tones I gained whilst on it went away. The ones I was treating went away "temporarily".

Prednisone affects the mineral receptors (I don't know in what capacity) as well which is why Im really not fond of it for acoustic trauma when hydrops may already be present (could make them worse, acoustic trauma forms temporary hydrops in mice models, in fact for those studies hypertonic saline solution injected or Lasix both helped the mice considerably recover synapses compared to controls).

Dexamethasone is superior in this respect, having pretty much nil affinity for that receptor, but it is much much stronger.

Keep in mind this is basically high level cortisol so it's literally feeding your brain stress. This may explain the increased acuity of sounds. Again... should be temporary in most of us.

If stress makes tinnitus worse, why use Prednisone? Inflammation and prosurvival of hair cells over neural impact I guess? I do recall it can impact the hippocampal neurons in a negative way (cortisol levels co-relate to anti-survival of those neurons). Physiological stress also does a lot of other things than just raise basal cortisol levels. Prednisone wouldn't likely have this impact as the "stimulus" is missing, and lots of people report steroids helping ultimately for tinnitus/hearing loss.

Those who get tinnitus from stress ironically I doubt Prednisone would be a good idea as it's central tinnitus and adding more synthetic stress isn't great.

Thanks for explaining. Man you know your shit lol. So basically Prednisone shouldn't be used by everyone, and if used, then taper extremely slow... Got it.

Have you tried a hydrops specific diet to see if it helps? They told me I had hydrops but just based on my dizziness from hearing loss.

 

[Matchbox]

Thanks for explaining. Man you know your shit lol. So basically Prednisone shouldn't be used by everyone, and if used, then taper extremely slow... Got it.

Have you tried a hydrops specific diet to see if it helps? They told me I had hydrops but just based on my dizziness from hearing loss.

Off and on. It's been hard to correlate thus far.

My tinnitus really bothers me in the low frequencies, yet my hearing loss there is minimal and no "real" dizziness.

 

[Wrfortiscue]

Off and on. It's been hard to correlate thus far.

My tinnitus really bothers me in the low frequencies, yet my hearing loss there is minimal and no "real" dizziness.

Have you tried hearing aids or maskers? I just picked up hearing aids.

 

[ZFire]

Hi @Matchbox, how has the palinacousis been treating you these days? Notice any positive changes?

The mimicry has diminished for me to a great extent. I haven't done anything in particular. So far it only occurs when I hear a leaf blower being used. The noise it makes still lingers with me for another 30 minutes once it stops. Used to be longer but it's gotten much less. Such a bizarre symptom.

 

[Matchbox]

I can recreate what Liberman et al. did in their cochlear synaptopathy model (NT-3+polymer matrix). I think that will be my last resort.

What exactly is this and how would you do it?

 

[Matchbox]

Hi @Matchbox, how has the palinacousis been treating you these days? Notice any positive changes?

The mimicry has diminished for me to a great extent. I haven't done anything in particular. So far it only occurs when I hear a leaf blower being used. The noise it makes still lingers with me for another 30 minutes once it stops. Used to be longer but it's gotten much less. Such a bizarre symptom.

Yes and no.

I had a really stressful few weeks, but some combination of a MUCH higher carb + Vitamin C intake as well as diuretic/tricyclic SSRI (Cyclobenzaprine+ Amitriptyline + Hydrochlorothiazide) is actually significantly helping.

I also took 0.1 mg Dexamethasone (so, almost none and unrelated to the last trial I did). Fats or not eating, not sleeping, or getting sick makes it worse. Sourdough bread can bring the ringing up but the distortions sometimes collapse.

My mimicry has also diminished, until I do benzos. I'm certain they are now related.

2 weeks ago on this regime above, I was able to do headtapping. And, for about 30 seconds, I shit you not, total silence. Total. Silence. Then the wave of shit tsunami sound came on, but it is a huge difference. Distortions also have been cut by I'd say 2/3rds.

Likely due to what I've been doing lately with diet, so at least I have something to go down on. It's likely vascular, immune or ATP related, nerves fire better on carbs, so my inhibitory network may just need more energy or bloodflow.

Inflammation / if I feel sick also plays a HUGE role. My nose will get beat red (as well as my cheeks), and my tonsils sore, and the wavering distortions / ear popping will absolutely get worse.

I also tried a PDE5 inhibitor (you can figure it out) and I so far have had a permanent and instant setback within 1 hour of its use. I would not suggest using them, even though they aren't typically labeled ototoxic they absolutely are.

Hopefully it dies down.

It does all point to something immune or metabolic ultimately, so that's my focus of lab testing.

 

[Tau]

What exactly is this and how would you do it?

It's neurotrophin-3 and 17% Pluronic F127 in PBS, a very simple mixture. It requires an intratympanic injection, though.