From 0 to Debilitating Tinnitus in 2 Months

[Matchbox]

Not that I'm keeping tabs on this, but it's a good record of how things have been. They seemed to be getting better and suddenly over the last couple weeks have worsened. Still don't know as to why, theory is it's pressure related now. Woke up nauseous too. No idea if it was due to a single tiny bit of alcohol but seems suspicious.

Still no ABR or ECoG testing

If you want to listen to how it sounds now, turn your volume down first. Pretty accurate representation.

Unlike the 4 seconds, this goes on forever in anything I hear.

 

[Hottopic29]

Not that I'm keeping tabs on this, but it's a good record of how things have been. They seemed to be getting better and suddenly over the last couple weeks have worsened. Still don't know as to why, theory is it's pressure related now. Woke up nauseous too. No idea if it was due to a single tiny bit of alcohol but seems suspicious.

Still no ABR or ECoG testing

If you want to listen to how it sounds now, turn your volume down first. Pretty accurate representation.

Unlike the 4 seconds, this goes on forever in anything I hear.

That's what my tinnitus sounds like. It builds up in quiet.

 

[Wrfortiscue]

Not that I'm keeping tabs on this, but it's a good record of how things have been. They seemed to be getting better and suddenly over the last couple weeks have worsened. Still don't know as to why, theory is it's pressure related now. Woke up nauseous too. No idea if it was due to a single tiny bit of alcohol but seems suspicious.

Still no ABR or ECoG testing

If you want to listen to how it sounds now, turn your volume down first. Pretty accurate representation.

Unlike the 4 seconds, this goes on forever in anything I hear.

Sounds like aliens.

 

[Matchbox]

That's what my tinnitus sounds like. It builds up in quiet.

This hot garbage sounds like yours?

 

[Hottopic29]

Sounds like aliens.

It's awful. The sound builds up in silence.

This hot garbage sounds like yours?

Yes, it started 3 days after stopping Prednisone. I thought my fridge was running, went to listen, then got back in bed, then it built up in quiet, like every frequency of bell tones.

This is tinnitus I would expect somebody who hit their head to temporarily hear. It's like a mess of tones. I feel like the brain's plasticity has been altered.

Wondering if I should do another course of Prednisone and taper or will I get worse. I hardly hear it if I'm out being busy, but in silent or when on the couch it builds up.

 

[Matchbox]

It's awful. The sound builds up in silence.

Yes, it started 3 days after stopping Prednisone. I thought my fridge was running, went to listen, then got back in bed, then it built up in quiet, like every frequency of bell tones.

This is tinnitus I would expect somebody who hit their head to temporarily hear. It's like a mess of tones. I feel like the brain's plasticity has been altered.

Wondering if I should do another course of Prednisone and taper or will I get worse. I hardly hear it if I'm out being busy, but in silent or when on the couch it builds up.

Guess how I began getting these crazy sounds? Apart from the ringing? Super fast short Prednisone taper.

I STRONGLY recommend not using it except if you go deafened. It's gambling imo.

Every single time I used it, shit always got worse coming off. It's a shit trade for it temporarily getting quieter. Can't be just coincidence.

I'm getting my levels of C3, C4, anti-DNA, anti-phospholipids and cortisol checked soon again to see if there's suspected dysfunction from the Prednisone.

 

[Wrfortiscue]

Guess how I began getting these crazy sounds? Apart from the ringing? Super fast short Prednisone taper.

I STRONGLY recommend not using it except if you go deafened. It's gambling imo.

Every single time I used it, shit always got worse coming off. It's a shit trade for it temporarily getting quieter. Can't be just coincidence.

I'm getting my levels of C3, C4, anti-DNA, anti-phospholipids and cortisol checked soon again to see if there's suspected dysfunction from the Prednisone.

I'm learning real fast Prednisone shouldn't just be taken like candy...

 

[Hottopic29]

Guess how I began getting these crazy sounds? Apart from the ringing? Super fast short Prednisone taper.

I STRONGLY recommend not using it except if you go deafened. It's gambling imo.

Every single time I used it, shit always got worse coming off. It's a shit trade for it temporarily getting quieter. Can't be just coincidence.

I'm getting my levels of C3, C4, anti-DNA, anti-phospholipids and cortisol checked soon again to see if there's suspected dysfunction from the Prednisone.

Apparently even 3 days on Prednisone can cause brain issues that can take 8 months to a year to improve.

Have you had any improvements?

 

[VeryUnfortunate]

@Matchbox, I hope you are doing better these days. I've kept up with your posts ever since I first joined, you are in my thoughts my friend.

 

[Matchbox]

Apparently even 3 days on Prednisone can cause brain issues that can take 8 months to a year to improve.

Have you had any improvements?

Well the Prednisone was great while on it and I remember laughing out loud hearing my tones die within a couple hours of taking my 75 mg dose. The distortions I had though? They never changed on Prednisone.

It was always the coming off where I was left permanently in worse shape. I've gotten more used to it but not the random bouts of losing hearing and blaring tinnitus (seems random).

There are some very interesting things about my tinnitus I have a hard time finding others with. I do not have noxacusis unless a dog barks right in my face (stab stab) after which the stabs and aches last for hours but, unlike some, mine does go away in earplugs after an hourish. Hyperacusis is pretty negligent now too compared to a year ago. I use soft white noise all day just so the garbage isn't in my head (the white noise sounds like shit tho) so I can focus or work.

All kinds of weird stuff but what helps? Seemingly complex carbs, coffee, exercise (when blood pressure catches up after a strong winded set), LOTS of sleep, small amounts of serotonin and melatonin (too much makes it much worse), watching salt (direct salt, natural salt in food not nearly as concerning) and using a non loop diuretic. Also head tapping or vibration against the skull, but that's its own monster where it gets way better, comes back as a tsunami of chaotic noise and then dies to nothing and finally to baseline (pendalum effect). I wear earplugs doing it to hear what's going on better but a whisper quiet room will be the same.

Amitriptyline MIGHT be helping, but it's kind of inconclusive. Amitriptyline mixed with Cyclobenzaprine seems most predictable for making a quieter morning. These are all low doses given two drugs at once. The diuretic used to seemingly work alright.

The right combo has made days where the tinnitus is whisper quiet and I'm almost cured... but it always goes back to rampant awful shit and random bouts of quieter world in one ear... eeeeeee for a few hours!

So it's complicated and seems blood pressure or head pressure related. Doing a hand stand will make my distortions become tsunami loud and satanic seashells of hell. Vitamin D also makes me worse, sometimes a lot. I'm wondering if this is some sensitive form of otosclerosis... and maybe secondary hydrops.

Thank you Prednisone.

All my blood tests came back fine, but it seems I make a lot of cortisol, near the high end of normal (and this is 3 hours after waking :$). My complement was low but they never did the ANA test because Canada. And of course my latest test compliment is where it should be.

I also have random growths on my face as bumps now. I don't know if related. It seems a bit of a coincidence as they grew as my tinnitus developed and got worse. Doctors don't care. They're tired of seeing me. I have to use an antibiotic cream and it has to keep growing for them to take it semi serious.

 

[ZFire]

I use soft white noise all day just so the garbage isn't in my head (the white noise sounds like shit tho) so I can focus or work.

So white noise doesn't sound right for you as well? If I have the air conditioner on, one of my tinnitus tones matches the volume level of that AC and will ride on top of it. Makes hearing the actual AC noise really difficult and I can't mask the tinnitus.

Is that distortions for you or reactive tinnitus? I can still hear this particular tinnitus noise that's reacting even in silence, albeit it's much lower in volume because there's no triggering sound source.

 

[Matchbox]

Just to keep a record.

I had to go on steroids, Dexamethasone, to avoid the problems with Prednisone potentially screwing up fluid balance.

I had a hearing loss in left ear that was sudden and quite terrifying and did not get better after 24 hours. Could have been from a long car ride, or lack of fluids... it's hard to say. It didn't come back on its own.

Missing treble sounds and anything that was supposed to be 6 kHz made a screech in my ear as if a mosquito were there instead, which is hard with everyday sounds doing that constantly.

I'm totally off steroids. They were slowly adding more noises. This could have been due to hippocampal neurons known to die with stress or from Prednisone affecting fluid levels. I used Dexamethasone mostly to avoid this extra variable but mixed some Prednisone to have a short time of high dosing (1/3 of total steroid was Prednisone). Dexamethasone worked on its own as my audiogram improved using just it initially within hours.

Last night was satanic tinnitus. I think possibly only those with hydrops or AIED might experience something similar. Every terrifying sound I ever had was amplified by 5. It was the worst tinnitus and hyperacusis night I've had in many months. I had been cutting back steroids previously with no such madness at 3am. in fact my left ear was ungodly quiet then.

There's only 3 possibilities that I had control of.

1. I took NAC the night of quiet and not last night.
2. I took Betahistine the night of quiet and not last night.
3. Dexamethasone has such a long half life that it doesn't matter that I began tapering the night before and only truly lower levels which spiked inflammatory damage kicked off last night.

My audiogram had gained in my right and left ears. My right ear gain has disappeared as of this morning. It was surprising to hear 1500 Hz so clearly a couple days ago. A difference of 20 dB in my right ear, better than my left, to say the least I was very surprised. My left ear which initially lost hearing at 6 kHz down to 25 dB has all come back and remains, so off Dexamethasone for now. Goes to show whatever is going on is certainly not always permanent.

Hearing is duller on right but I care way more about the fucking noises and distortions.
I hear shimmering, rapidly fluctuating in volume tinnitus at around 4-6 kHz. I'd imagine bilaterally, along with grunts groans, distortions, and seashell noises in both ears yet again in the morning (which makes work very very hard).

Any ideas for blood tests that I could convince someone to run where bilateral tinnitus increases so drastically on steroid reduction would be helpful to suggest.

I hope this is temporary and that I don't have nightmare tinnitus/distortions again tonight. Not eating or sleeping and profusely sweating whilst having your life in shambles around you isn't great for suicidal thoughts.

 

[Esra47]

Do you think that Prednisone can cause permanent damage? I didn't taper slowly enough and have developed a morse code tinnitus which reacts to everything.

 

[DebInAustralia]

Any ideas for blood tests that I could convince someone to run where bilateral tinnitus increases so drastically on steroid reduction would be helpful to suggest.

Lyme testing?

Cd57 - immune suppression?

Live blood analysis - look for inflammatory markers for EBV/other?

Adrenal/cortisol testing?

DHEA?

Cytokine panel?

Histidine (if low, common to have histamine excess)

Aldosterone?

 

[makeyourownluck]

Do you think that Prednisone can cause permanent damage? I didn't taper slowly enough and have developed a morse code tinnitus which reacts to everything.

Hi @Esra47, I hope you're doing ok. Crazy how the pills that are supposed to help can worsen someone's situation. I have Prednisolone in my cupboard but haven't taken it because of stories like yours. Thankfully my pain eased off and I'm having a good spell, and now I have a stash for if/when I loose more hearing.

Also, people are more likely to answer of your questions if you tag them or quote their post.

 

[Esra47]

Hi @Esra47, I hope you're doing ok. Crazy how the pills that are supposed to help can worsen someone's situation. I have Prednisolone in my cupboard but haven't taken it because of stories like yours. Thankfully my pain eased off and I'm having a good spell, and now I have a stash for if/when I loose more hearing.

Also, people are more likely to answer of your questions if you tag them or quote their post.

Thank you. I am fine except of my reactive tinnitus Well, I will never take Prednisolone again. I've learned my lesson. I don't even know if these pills are really going to help people with hearing loss or maybe it's just time which is the magic pill for some people.

And thanks a lot for the advice

 

[makeyourownluck]

Thank you. I am fine except of my reactive tinnitus Well, I will never take Prednisolone again. I've learned my lesson. I don't even know if these pills are really going to help people with hearing loss or maybe it's just time which is the magic pill for some people.

And thanks a lot for the advice

No worries.

Yeah, there is a sweet spot for taking Prednisolone. I think people say you should ideally take them within the first 72 hours, and only if you have suffered hearing loss. However, as we all know, it's very difficult to see an ENT within that time frame, unless you're unlucky/lucky enough to be bleeding from the ears.

I hope your reactivity calms down. Try remain positive. At this point, it's all we've got.

 

[in_LA]

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

Cross your fingers and toes.

Do you still have palinacousis? If so, how long have you had it for? Mine started June and I'm desperate.

Did you get the MRI? Did it show anything?

 

[in_LA]

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.

Dude you had palinacousis? I have had it too since June. I think it got way more noticeable after taking a second round of Prednisone. I'm hoping it'll go back to baseline. Mine can get pretty loud sometimes, I can't even tell where sound is coming from. The strange thing is, I can tell when it's coming because I can start hearing music from the A/C etc.

How did you get yours? And how long have you had it?

I just realized it's only my left ear, however if it's loud, it comes from both ears.

 

[Marshall]

Dude you had palinacousis? I have had it too since June. I think it got way more noticeable after taking a second round of Prednisone. I'm hoping it'll go back to baseline. Mine can get pretty loud sometimes, I can't even tell where sound is coming from. The strange thing is, I can tell when it's coming because I can start hearing music from the A/C etc.

How did you get yours? And how long have you had it?

I just realized it's only my left ear, however if it's loud, it comes from both ears.

Your brain is filling in missing frequencies with familiar sounds or really just anything your brain can compute into those frequencies. I have this with certain white noises, and so does my mom. More people probably have it to some degree, but don't notice it because it's the last thing on their mind. It's only a huge problem when you hear it loud af and can distinctly make it out.

 

[Marshall]

I'm learning real fast Prednisone shouldn't just be taken like candy...

But it's the first thing you see when you first get tinnitus and how to treat it. Lmao. What a joke.

 

[in_LA]

Your brain is filling in missing frequencies with familiar sounds or really just anything your brain can compute into those frequencies. I have this with certain white noises, and so does my mom. More people probably have it to some degree, but don't notice it because it's the last thing on their mind. It's only a huge problem when you hear it loud af and can distinctly make it out.

The thing is my hearing is normal, but I just got a normal hearing test.

 

[ZFire]

Dude you had palinacousis? I have had it too since June. I think it got way more noticeable after taking a second round of Prednisone. I'm hoping it'll go back to baseline. Mine can get pretty loud sometimes, I can't even tell where sound is coming from. The strange thing is, I can tell when it's coming because I can start hearing music from the A/C etc.

How did you get yours? And how long have you had it?

I just realized it's only my left ear, however if it's loud, it comes from both ears.

Yeah, I had it. My auditory system went haywire right after steroids, but not sure if I attribute many ear issues to steroids entirely. Palinacousis was one of the symptoms that did emerge soon after steroids. It lasted roughly 7-9 months for me. I don't notice it anymore and the sounds (leaf blower, distant sirens, hovering helicopter, some music) that used to trigger the mimicry don't happen anymore as far as I know.

 

[in_LA]

Yeah, I had it. My auditory system went haywire right after steroids, but not sure if I attribute many ear issues to steroids entirely. Palinacousis was one of the symptoms that did emerge soon after steroids. It lasted roughly 7-9 months for me. I don't notice it anymore and the sounds (leaf blower, distant sirens, hovering helicopter, some music) that used to trigger the mimicry don't happen anymore as far as I know.

This is awesome, I'm glad you have found relief. I hope my journey is not long. Have you gone back to listening music, to using headphones or going to movie theaters? Do you think it can come back? I wonder how long I should lay low before I can resume my life to some level of normalcy?

 

[ZFire]

This is awesome, I'm glad you have found relief. I hope my journey is not long. Have you gone back to listening music, to using headphones or going to movie theaters

Yes, I can listen to music, at low-mid levels of volume now. While my hyperacusis (loudness) is mild now, some music mostly heavy/death metal is still bothersome. The sound of an electric guitar makes me feel very uneasy. It sounds too screechy to me, so have been avoiding that. I haven't tried headphones or going to movie theaters yet. I'm not sure if I plan on going anytime soon. Still trying to figure out how my ears operate.

Do you think it can come back?

This is a good question, I mean it's possible that it could return if you were to go through another significant noise trauma. Not sure though. I'm only 1 year and 3 months into this, so I'm still learning as I go. But I don't care about it returning at the moment. I care about the NOW and right now, the palinacousis is not here and that's good enough for me.

I wonder how long I should lay low before I can resume my life to some level of normalcy?

You're probably gonna hear this a lot or already have heard it, but everyone's experience is different and very individual. Only you will know when you're feeling better and when it's time to test the waters.

 

[in_LA]

Yes, I can listen to music, at low-mid levels of volume now. While my hyperacusis (loudness) is mild now, some music mostly heavy/death metal is still bothersome. The sound of an electric guitar makes me feel very uneasy. It sounds too screechy to me, so have been avoiding that. I haven't tried headphones or going to movie theaters yet. I'm not sure if I plan on going anytime soon. Still trying to figure out how my ears operate.

This is a good question, I mean it's possible that it could return if you were to go through another significant noise trauma. Not sure though. I'm only 1 year and 3 months into this, so I'm still learning as I go. But I don't care about it returning at the moment. I care about the NOW and right now, the palinacousis is not here and that's good enough for me.

You're probably gonna hear this a lot or already have heard it, but everyone's experience is different and very individual. Only you will know when you're feeling better and when it's time to test the waters.

Before Prednisone, movie theaters didn't bother me, so I'm just waiting for my sensitivity to go back to baseline. It's been frustrating for my girlfriend because of the upcoming show we were supposed to go. I miss music so much, I can listen to it but not too loud like I used to.

 

[Matchbox]

Dude you had palinacousis? I have had it too since June. I think it got way more noticeable after taking a second round of Prednisone. I'm hoping it'll go back to baseline. Mine can get pretty loud sometimes, I can't even tell where sound is coming from. The strange thing is, I can tell when it's coming because I can start hearing music from the A/C etc.

How did you get yours? And how long have you had it?

I just realized it's only my left ear, however if it's loud, it comes from both ears.

I second @ZFire's experience here.

It came on after tapering Prednisone and took MONTHS, but it did fade and occur less and less.

As far as filling in gaps, there's no rhyme or reason to it. Sure it could be nerve damage, it could be rebound inflammation, but the neuro I saw basically said it sounds like "that area is sensitive to stimulation and gets stuck in a loop". White noise actually HELPED me out with the mimicry.

Certain SSRIs and Na blockers in low doses also seem to help.

Benzos make it "quieter" but it doesn't stop, and then there is re-bound mimicry I have to contend with for days.

Mine never really went "away" but it got a lot better, rarely occurs now unless:

1) I do steroids again
2) I come off any GABA drugs
3) I hear a VERY loud sound repetitively in the 1-1.5 kHz range (training my nerve pathways to fire, guess that path is "sensitive")

Even then, when it comes back, it lasts only about a week.

It's only ever been the right ear, but I have chaotic tinnitus in both, which has had more frequent moments of true volume reductions. Sound distortions in music haven't really changed much, but if the volume is quiet it is ok until the distortions ramp up over the music. The type of music matters too, if it has a lot of noise going on instead of 1-3 distinct instruments, it will get bad.

I was supposed to do an ABR as I'm guessing this might be nerve related really, but I was told by the audiologist that it is an hour long test of a single pulsating beep at ungodly sound levels (90ish dB+). She said it actually gave her tinnitus and thought it'd be nuts to do it on me. She might've saved my ass.

Save steroids for hearing loss, I had some over a car trip occur, very unfun and scary shit.

Steroids worked (really well, haven't had such a good audiogram since pre-tinnitus) and the insane extra tinnitus has come down back to its previous bullshit baseline, so the increases (which were suicidal) are in fact temporary (backs down over 2-3 weeks once off the steroids). I taper quite slowly, and also used Dexamethasone this time instead, which has a much longer half-life and to reduce any cross over to screwing with inner ear fluid homeostasis. Worked just as well when dose adjusted (1 Dexamethasone : 7 Prednisone equivalent).

 

[in_LA]

@Matchbox, it would obviously be shitty to get a palinacousis diagnosis but I read that an anti-epilectic medication completely took away the symptoms...

@Mary97, I've read the same, but I don't have a history of epilepsy or any of my family members for that matter, how can an anti-epilectic drug help people with palinacousis? Would it be worth exploring that with a neurologist? Would I have to take it forever?

 

[in_LA]

I second @ZFire's experience here.

It came on after tapering Prednisone and took MONTHS, but it did fade and occur less and less.

As far as filling in gaps, there's no rhyme or reason to it. Sure it could be nerve damage, it could be rebound inflammation, but the neuro I saw basically said it sounds like "that area is sensitive to stimulation and gets stuck in a loop". White noise actually HELPED me out with the mimicry.

Certain SSRIs and Na blockers in low doses also seem to help.

Benzos make it "quieter" but it doesn't stop, and then there is re-bound mimicry I have to contend with for days.

Mine never really went "away" but it got a lot better, rarely occurs now unless:

1) I do steroids again
2) I come off any GABA drugs
3) I hear a VERY loud sound repetitively in the 1-1.5 kHz range (training my nerve pathways to fire, guess that path is "sensitive")

Even then, when it comes back, it lasts only about a week.

It's only ever been the right ear, but I have chaotic tinnitus in both, which has had more frequent moments of true volume reductions. Sound distortions in music haven't really changed much, but if the volume is quiet it is ok until the distortions ramp up over the music. The type of music matters too, if it has a lot of noise going on instead of 1-3 distinct instruments, it will get bad.

I was supposed to do an ABR as I'm guessing this might be nerve related really, but I was told by the audiologist that it is an hour long test of a single pulsating beep at ungodly sound levels (90ish dB+). She said it actually gave her tinnitus and thought it'd be nuts to do it on me. She might've saved my ass.

Save steroids for hearing loss, I had some over a car trip occur, very unfun and scary shit.

Steroids worked (really well, haven't had such a good audiogram since pre-tinnitus) and the insane extra tinnitus has come down back to its previous bullshit baseline, so the increases (which were suicidal) are in fact temporary (backs down over 2-3 weeks once off the steroids). I taper quite slowly, and also used Dexamethasone this time instead, which has a much longer half-life and to reduce any cross over to screwing with inner ear fluid homeostasis. Worked just as well when dose adjusted (1 Dexamethasone : 7 Prednisone equivalent).

When you said it comes back for a week, what did you mean? Did you get a constant sound or song for a week? Or was it easier to set off during that week? As you know, mine needs to be loud enough. Today walking around, someone was blasting their wireless speaker, it must've been quite powerful because my right ear reacted with a lot of sensitivity, for a moment I thought it did something to it. So my issue is definitely related to hyperacusis. If my ear thinks it's too loud, it may get stuck. The odd thing is, so far every time I have had an episode, I don't get voices or sounds stuck in my head, it just sets off music. Maybe once I did get the bus sounds stuck though.

 

[Matchbox]

When you said it comes back for a week, what did you mean? Did you get a constant sound or song for a week? Or was it easier to set off during that week? As you know, mine needs to be loud enough. Today walking around, someone was blasting their wireless speaker, it must've been quite powerful because my right ear reacted with a lot of sensitivity, for a moment I thought it did something to it. So my issue is definitely related to hyperacusis. If my ear thinks it's too loud, it may get stuck. The odd thing is, so far every time I have had an episode, I don't get voices or sounds stuck in my head, it just sets off music. Maybe once I did get the bus sounds stuck though.

For me it's specific noise frequencies, usually resulting in intermittent very similar beeps of that noise, especially as a sound distortion. Not constant, intermittent and only in loud environments. Calms down in quiet and goes away where normal tinnitus garbage remains.