Bad Dysacusis / Distortions — Manageable Tinnitus: A 19-Year-Old Guy Suffering for Two Months

[Pierce Wolf]

That's interesting that nicotine increases yours. Vaping doesn't affect mine... Have you tried a benzo to see if that has any positive effect for a break once in a while? Not a great solution but they do seem to help some people.

Recently I've actually taken up some vaping. I find the nicotine "high" somewhat similar to a THC high although it doesn't last nearly as long (comparing seconds to hours). So while they both spike my symptoms, the nicotine high goes away so quickly that I do not mind it nearly as much. I have to avoid benzos for work and I don't like them anyway. Too easy to get hooked and end up with more problems.

 

[Pierce Wolf]

Time for another update as things have once again changed.

So recently I've noticed my bad ear's tinnitus is almost as low in volume as the other good ear. This is huge for the tinnitus in the other ear Is so low volume I never even noticed it before my incident. The bad ears ring is although much higher pitched. Sleeping is becoming a lot easier as a result. I will say this is with constant earplug use mind you, if I expose my bad ear at all to sounds the ring goes way up to old levels.

Oh, and I've recognized the hypersensitivity from overprotection. I can really clearly tell how my one ear hears things much much louder than the other and not just because it's distorted and painful.

My pain reactions without the earplug is somewhat more manageable though, I've now gone almost whole days without needing an earplug. Albeit very stagnant days of sitting inside and playing video games or watching YouTube or doing simple chores (watering garden, making meals, doing laundry). Still the shower and car air conditioning seem to set off the distortions more than anything.

The vertigo has been very very random. The attacks aren't happening as often but they do happen much more if I am not wearing hearing protection or if I'm doing a lot of exercise. Yesterday I hit my head on the wall by accident. It gave me one of the worst attacks in days. Close to vomiting. Sometimes I can predict them happening. I'll hear a really loud noise and then immediately notice my ear start to vibrate and burn and soon the room starts spinning.

Oh and I've tried weed again and it still did spike my bad ear through the roof. It felt good to be high again. My body felt completely amazing but the ring got super super loud. Anxiety didn't take over but it was hard to fend off. Probably going to keep use very very minimal if even at all. It's just so hard when my girlfriend who I'm around a lot uses weed like it's drinking water. Not to mention all the fond memories I've had with the plant.

But I do feel like I am still improving somewhat.

Other random things that still happen:

• My bad ear makes almost no earwax (curious as to why this is since it always made as much as the other ear before my incident)
• My bad ear still pops more easily than the other
• My bad ears tinnitus spikes when chewing or flexing my jaw whereas the other ears tinnitus does no such thing

 

[Guywithapug]

Time for another update as things have once again changed.

So recently I've noticed my bad ear's tinnitus is almost as low in volume as the other good ear. This is huge for the tinnitus in the other ear Is so low volume I never even noticed it before my incident. The bad ears ring is although much higher pitched. Sleeping is becoming a lot easier as a result. I will say this is with constant earplug use mind you, if I expose my bad ear at all to sounds the ring goes way up to old levels.

Oh, and I've recognized the hypersensitivity from overprotection. I can really clearly tell how my one ear hears things much much louder than the other and not just because it's distorted and painful.

My pain reactions without the earplug is somewhat more manageable though, I've now gone almost whole days without needing an earplug. Albeit very stagnant days of sitting inside and playing video games or watching YouTube or doing simple chores (watering garden, making meals, doing laundry). Still the shower and car air conditioning seem to set off the distortions more than anything.

The vertigo has been very very random. The attacks aren't happening as often but they do happen much more if I am not wearing hearing protection or if I'm doing a lot of exercise. Yesterday I hit my head on the wall by accident. It gave me one of the worst attacks in days. Close to vomiting. Sometimes I can predict them happening. I'll hear a really loud noise and then immediately notice my ear start to vibrate and burn and soon the room starts spinning.

Oh and I've tried weed again and it still did spike my bad ear through the roof. It felt good to be high again. My body felt completely amazing but the ring got super super loud. Anxiety didn't take over but it was hard to fend off. Probably going to keep use very very minimal if even at all. It's just so hard when my girlfriend who I'm around a lot uses weed like it's drinking water. Not to mention all the fond memories I've had with the plant.

But I do feel like I am still improving somewhat.

Other random things that still happen:

• My bad ear makes almost no earwax (curious as to why this is since it always made as much as the other ear before my incident)
• My bad ear still pops more easily than the other
• My bad ears tinnitus spikes when chewing or flexing my jaw whereas the other ears tinnitus does no such thing

Glad to see some progress. Sounds like you have reactive tinnitus. When you eat crunchy things like cereal, do you hear an elevation in the ringing momentarily?

 

[Brian Newman]

Nothing yet progress wise. Hypercausis is horrible. I'm still trying the chiropractor, and will report back later.

 

[__nico__]

@Pierce Wolf, have you ever looked into asking an ENT for Lasix or Moduretic? Seems to be helpful for people who suffer from dysacusis and vertigo (combined with Betahistine) like us. I'll be giving it a shot soon.

 

[Matchbox]

@Pierce Wolf, have you ever looked into asking an ENT for Lasix or Moduretic? Seems to be helpful for people who suffer from dysacusis and vertigo (combined with Betahistine) like us. I'll be giving it a shot soon.

If you're talking about me, keep in mind this hasn't really done anything substantial for distortions imo. My thudding tinnitus is what I cared about as well as my morning drones. Those still exist sadly. The thudding has become less which I attribute to Betahistine imo.

I just started on Lasix. Keep in mind Lasix can also CAUSE tinnitus (higher risk than Betahistine, but not as high as certain antibiotics).

 

[__nico__]

If you're talking about me, keep in mind this hasn't really done anything substantial for distortions imo. My thudding tinnitus is what I cared about as well as my morning drones. Those still exist sadly. The thudding has become less which I attribute to Betahistine imo.

I just started on Lasix. Keep in mind Lasix can also CAUSE tinnitus (higher risk than Betahistine, but not as high as certain antibiotics).

Thanks for the tip. I'll be getting Moduretic though.

 

[AliasM]

Other random things that still happen:

• My bad ear makes almost no earwax (curious as to why this is since it always made as much as the other ear before my incident)
• My bad ear still pops more easily than the other
• My bad ears tinnitus spikes when chewing or flexing my jaw whereas the other ears tinnitus does no such thing

They need to do so much more research so our recovery can be more predictable.

The right ear that my tinnitus started in (moved to the left ear a few weeks later) is my ear with better hearing. The right was my bad tinnitus ear, but now it is my better tinnitus ear... but even though the right is now my better tinnitus ear, it is the one that has the pain hyperacusis. It hurts like hell. My bad tinnitus ear does not have hyperacusis. The right is the one that pops and blocks, but the worse tinnitus ear (with the worse hearing) does not. The sound in my worse tinnitus ear is somatic and increases with neck movement. The tinnitus in my hyperacusis ear does not change volume with movement.

Like you, I can not fricking work all this out!

Since tinnitus started, the wax does not come out of my ears. I know it is building up in there and even the softening drops don't do anything. Are you sure yours isn't just building up in there too?

 

[Brian Newman]

Well guys I'm fucked! After all my problems I just got in a car accident, those airbags destroyed my hearing. I hopped on Prednisone right away while I was in the hospital.

 

[Pierce Wolf]

Well guys I'm fucked! After all my problems I just got in a car accident, those airbags destroyed my hearing. I hopped on Prednisone right away while I was in the hospital.

Let us know how it goes and if you think the Prednisone was helpful at all!

 

[linearb]

Well guys I'm fucked! After all my problems I just got in a car accident, those airbags destroyed my hearing. I hopped on Prednisone right away while I was in the hospital.

I went through an airbag deployment a couple years ago with no Prednisone and no issues, thankfully. It wasn't a side impact, those are worse.

 

[Brian Newman]

Prednisone is helping a lot. I called my ENT for another week's dose. Lol whenever I'm on Prednisone, my hyperacusis goes away. It's so nice. I also get really calm and happy when I'm on it. But I feel the swelling starting to go down.

 

[Marin]

Prednisone is helping a lot. I called my ENT for another week's dose. Lol whenever I'm on Prednisone, my hyperacusis goes away. It's so nice. I also get really calm and happy when I'm on it. But I feel the swelling starting to go down.

Wow, I hope your hyperacusis stays down when you taper off the Prednisone. How much are you taking to get such a dramatic effect?

 

[Brian Newman]

Wow, I hope your hyperacusis stays down when you taper off the Prednisone. How much are you taking to get such a dramatic effect?

I'm taking 40mg for 7 days, then taper off.

 

[Marin]

I'm taking 40mg for 7 days, then taper off.

Got it, thanks! I've been tempted to ask for Prednisone myself, but my worsening is months old now so I have doubts of it helping me. I still can't help but be curious, though...

 

[Matchbox]

I'm taking 40mg for 7 days, then taper off.

You've never had worse tinnitus or low frequency wavering coming off of the steroids?

I agree things are definitely better on them.

 

[Brian Newman]

You've never had worse tinnitus or low frequency wavering coming off of the steroids?

Well maybe. I got bad hyperacusis after I got off them, and the fluttering went from my right ear to my head. I was in a car accident and blew out my ears again so I had to take it.

 

[Brian Newman]

To be honest I'm getting addicted to Prednisone. My ears feel amazing when I'm on this shit. I can go to the gym with no problems. And believe it or not I can sleep so amazing on it. It's like taking Xanax before bed. Prednisone used to make me anxious and give me panic attacks but once you get used to it, it honestly makes you high.

 

[Matchbox]

It's all fun and games until your adrenal glands atrophy or you get hip necrosis.

I agree though. While on high doses of Prednisone I'm basically cured... but coming off of them has never been worth it for me. I always ended up worse off. Granted I wasn't given much in terms of real tapering over months.

A doctor friend of mine said if I'm healthy I could stay on it if it meant living... and to taper super slow over months off.


My family doctor didn't think that way. Cut cold turkey and got left with wavering drones.

 

[Matchbox]

I have been off the site for a while now and I thought I'd give some insight on how I'm doing now.

At this point I wear an earplug from the moment I wake up till when I'm going to sleep. I know I know... it's not what you should do and I may be risking heightened sensitivity. But let me just say that the pain that develops while leaving it out gets far far too severe for me to handle (pain scale legit climbs to a 10 within an hour just hearing medium and low volume stuff) and while it's out the distortions get worse and worse. I'm convinced that my hyperacusis symptoms will only continue to get worse no matter if I leave my ear plugged or not. But while it's plugged... bliss.

Since wearing one all day long I've actually started to feel somewhat normal again. More than I have ever in this nightmare. I go to band practice, I've resumed working construction, I listen to music and love it, I can enjoy my girlfriend's voice again!!! At this point I look at my right ear as completely useless and tbh accepting that has really helped bring my anxiety down and I would even go as far as to say my depression is gone. Of course when I plug up it isolates the tinnitus ring, but I'm very used to it at this point and it continues to go down in volume. Unlike the hyperacusis stuff.

Recently the friends of my mother told me that she actually has a friend that is an ENT. Since then I've had 3 visits in her office. The first one they did a whole boatload of tests. Almost all went fine although I had to keep my plug out which then involved sounds being played in my bad ear and making all of my symptoms jump through the roof, but I held on through it. Once again everything came back normal. The very last test however, didn't go as planned. It involved a constant pitch being played very loudly in my bad ear for a prolonged period of time while the other one tried to detect beeps at high frequencies. The test was supposed to switch ears but while they did the first portion of it, out of absolutely nowhere I felt a massive pressure drop in my bad ear and then suddenly the room started spinning super super rapidly and jaggedly. I didn't feel nauseous, but I felt incredibly tired like I could pass out at any moment in the chair. This scared the hell out of me. The ENT assured me that it probably isn't the onset of Meniere's disease but I'm not completely convinced. The episode lasted around 15 minutes and I haven't felt another since.

Today I had another visit with the ENT. Based on yet another test she thinks I may have a dysfunctional Eustachian tube and is trying to get me on a medicine that costs 95 dollars even with insurance that apparently helps keep the tubes closed more. The thing is the condition she thinks I may have doesn't come from acoustic trauma and I believe the test they did to find this was screwed up because I was very congested on my bad ear side. On top of that she also suggested steroids and I'm more ok with that but still extremely doubtful it will do anything at all.

At this point... here is my plan. I'm going to go back to therapy. I don't like it and don't trust it but I'm going to give it another try. I'm going to try TRT as well. If it doesn't help I will stop. If in 2 years' time I see absolutely no positive difference in my bad ear or if no regenerative drug comes out by that point, I'm going to seriously consider a Labyrinthectomy or other destructive surgery. Please understand that I have lost my ear in my eyes. No sound I hear through it sounds right to the point where I'd rather be hearing nothing at all, and not to mention the ear causes me so much unbearable pain if I try to use it. I understand that the surgery will induce complete deafness on my right side but if no sound is worth hearing and causes me pain then there is no use having it at all. People who have undergone this surgery for severe hyperacusis are rare, it's normally done for bad Meniere's disease. But for those that have had it done for hyperacusis, their symptoms do disappear for obvious reasons. I truly feel like this surgery is the cure for hyperacusis. It comes at a great cost but it makes sense. Thank God I still have one good ear.

I initially didn't read this sorry.

It does NOT sound like Meniere's... but it does sound like third window syndrome or a fistula. Both are rare but if the event you had was traumatic enough it could've lead to a rupture, or killed enough hair cells to allow the dissidence to finally become apparent.

Both are treatable, but good luck getting testing for them. You having a full out flat spin with noise playing "should've been" a dead give away...add to that anything that increases CSF (like exercise) and you go for a ride, if just screams to me fistula. My bet would be is if you took a fast elevator ride or went in a plane you'd start feeling spins too. That ENT should be able to at least "consider it" and try a bloodpatch in the ear to see if it helps...and if it does then you know what's what (and might need surgery). "At least"..they are fixable. Diuretics or steroids won't help or fix (diuretics might "slow" the leak) either condition, they need intervention. third window doesn't get worse, fistula may.
Any hearing loss at all? Any old audiograms to compare (that would be fabulous to compare air bone gaps, as a fistula/third window "should" leak out sound energy, showing a larger air bone gap).
Don't let them plug your ears during the air bone gap test. It will screw up the low frequencies and look larger than they really are due to occlusion (a few papers on this with blinded trials showing clear differences even going as far as 15db due to bias and bad methods). Anything bigger than 10db I'd be wondering about, (especially if you get dizzy during the test or tympanogram)...the best thing to have would be a "healthy" audiogram, even if it's from years ago to refer to.
The ENTs obsession with hearing loss below 25db to finally do something just baffles me.