Stupid Stupid Fluttering.

I think I've discovered something worse than my actual tinnitus. Lately, my cochlea seems hypersensitive enough to where I can tap on my ear and make my ear ringing morph and change. Since this has been happening certain noises sound muffled and distorted like my ear doesn't know what to do with the sounds it is picking up. If I plug my left ear, which is not experiencing this, I can hear the very sounds that are being distorted almost like I'm getting a double dose of sounds or there is some level of feedback. It's absolutely maddening and I don't know what to do about it. Maybe it's TTTS or something, but even if it is, it's not like that's a good thing because they currently have no idea what to do with people experiencing this. Of I whistle or someone talks to loud it's like my tinnitus rings responsively to the sounds stimulating it. I'm about at the end of my rope as I can no longer tolerate or enjoy sound. Furthermore, I'm sick of feeling like there are no answers for me.

 

Sorry for tough day, also tired of being told nothing can be done.

 

I experienced this in the beginning.

 

Man, you've had it pretty rough. You on any medications at the moment? ​

 

No medication specifically related to tinnitus. If I lightly slap tap on my ear my ear rings responsively. If I whistle, my ear rings responsively. The sounds of bass are distorted. Sounds such as air conditioners or heaters running through a house are distorted. Voices have a distorted echo to them like the teacher from Peanuts (Charlie Brown). My ear if it is plugged off with paper or an ear bud etc if I rub on my ear sounds metallic. The distortion is worse than the ringing and I can't stand it.

 

What benzos have you tried? I wonder if Flexeril would do anything, thought I read one person apparently helped his H by it, don't know anything about it myself though. I still think a lot of these conditions could be central nervous system related and not necessarily because your ears are "damaged". Maybe these symptoms could be helped by something like Autifony down the road and you could find a medication you could tolerate that at least slightly improves or decreases the frequency of the fluttering? I sound so doubtful of my suggestions, haha. I'm just brainstorming because these types of things are all i think about anymore...

 

Oh man, that sucks! Wish I could help out more but I wouldn't really have any solid advice here. I've seen your posts here and there for some time and its sounds like your auditory system is all sorts of jacked up - you found any good ENTs or neurologists willing to help you? I think finding a good doctor who is willing to investigate and try stuff out with you would be hugely beneficial, but I understand that is easier said than done.

Are you on any sort of benzodiazepine at the moment? If not, maybe try something with prominent muscle relaxant/anti-convulsant properties. Might help.

 

Had it.
I stuck cotton in my ears I think it was almost for a year. The distortion went away. The T lightened up. Try cotton, I think it's unhealthy to listen to anything when your ears are like that.
Like you, my loud voice, or whistling gets it going. My fluttering H has been going nuts lately. Would you believe the sound of my typing right now is making my ear flutter? I took the cotton out of that ear about an hour ago because it's quiet and late. But it looks like I better stuff it in tomorrow.
I believe in your case and mine, we cannot just go out and live life and "the hell with tinnitus." That would be asking for trouble. Good luck to ya.

 

Have you had any tests done to confirm or lead information into what you and I are apparently experiencing? I've never been examined for hyperacusis so I have no idea if that is a cause of what I am dealing with. Do you have anything that improves it for your or that made it go away? I got told by a medical assistant that there is no cure for tinnitus and that just like cancer, they'll be looking for hundreds of years and never find anything.

 

None of the doctors I have seen have done anything for the disorder. Either they've shoved me along or they've said just live with it. I had one doctor try steroidal injections. That required tubes in my ears and when the right ear tube fell out, my tinnitus skyrocketed and I got the bright idea to whack my ear a good time to see if I could change the tone. It worked, but then I started experiencing fluttering distortion and slowly became worse over time. I had no idea what to do, I was depressed, am depressed, and have no idea what to do. I can't keep living like this and need real answers. Answers that no one seem to have.

 

I've tried Ativan early on and it didn't seem to help at all. All it did was make me sleep. Sleep is about all I do anymore. What leads you to believe the central nervous system is to blame with regard to these conditions? All I know is I'm not eligible for most clinical trials because I'm in the allegedly chronic stage of tinnitus. And worse, I'm going to UT Dallas in June with this fluttering distortion it could block me from being in the MicroTransponder trial that I have a lot of faith in.

 

I've had WAY more success with cotton and simply avoiding loud sounds than any doctor could give me. In fact, three doctors, one, an ENT, simply mumbled their answer, took my Blue Cross and that was it. Well, long ago I knew I had damaged my ears from loud music so it made very simple sense to avoid any more. While I was still a teenager and didn't know what tinnitus was, I figured that if my ears were ringing I'd better give them a break (cotton). I stick to this treatment over 40 years later and it still works for me. It took me a few weeks to discover that my H was due to sounds also. Even very low sounds such as the heater kicking on would make it flutter. The first time it happened about 15 years ago it was really fluttering so I went to the ER thinking a bug was in my ear. The doctor was absolutely sure it was due to wax buildup. Wrong.

 

So it's never gotten better for you?

 

All I know is that I find this far more disturbing than the actual Tinnitus I'm experiencing and it's much more alarming to me. I spoke with Shawna Jackson at UT Dallas, an audiologist I am going to visit with regard to my issues and she told me to try the app mynoise which I am currently listening to now. I asked her if I was experiencing TTTS and she said it very well may be and assured me that it typically lasts only temporarily. Furthermore, she said that by using broadband noise like rainfall etc. the brain will learn to 'stop caring' which should cause the distortion to stop. Of course, that's assuming that's what is wrong

 

As will be my luck this will likely be permanent and yet another reason to just lie down

 

Oh ya. It's only slightly worse now than when I was a teenager. It goes up and down. For me, it's loud music that's always the culprit. One time I had a two year spike - and I deserved it. I was stupid and was playing VERY loud music. Even though I had earplugs AND headphones I got an awful 2 year spike that I thought would never go away. The ringing came down to a lower, very bothersome frequency and environmental sounds, voices included, were distorted. I had cotton in my ears most of the time for a year maybe. It took two years for it to settle down, and the H is now worse. But they're both triggered by excessive volume. And through the years (since 74) I've had other ups and downs.

 

That's not very uplifting

 

I'm trying to figure out what's going on with me. I have no idea what it is. If I chew hard candy, the pops internally will sometimes make my ringing increase and change. I want this to go away and can't find any answers. Maybe it's hyperacuity, I just don't know...all I know is it ruins my day to day function

 

@iwholove doesn't H almost always go in all cases ?

 

This was my understanding as well but opinion seems to be so varied, I can't discern fact from ideology anymore

 

All I want is to love a normal life. And it in spite of all the things I've overcome, this shit is literally siphoning the fervor right out of me

 

Hey there Packy, not to be nosey, but what country are you located in (maybe I know a good person to see around there)? How did all of this first start?

What you're going through sounds very difficult - maybe the solution for now is in protecting your hearing as much as you can and seeking out a therapy that will help you cope. Have you tried CBT or anything of that nature?

I know that doesn't sound like a cure, but I think sometimes the best we can do is adjust our attitude toward the sound when we can't adjust the sound. We are all pulling for you

 

I live in Tulsa, Oklahoma in the United States. I don't believe in things such as CBT. I see them as accepting a fate rather than finding an answer. Maybe that is not the case but it appears as if one is just giving up and paying someone to tell them to see the limelight. Earlier in the post I believe I addressed how it started, but my tinnitus started in 2011 after a series of gunshots and progressed into a seemingly impassable nightmare. I had tubes put in with the goal of having dexamethasome injections a year later for an attempt to change any permanent outcome. In turn the injections did nothing and when my right tube fell out prematurely, my tinnitus skyrocketed to unimaginably loud levels. In turn I responded by taking massive doses of Ativan which did nothing so I actually resorted to the lowness of hitting myself in the ear. And from that I got a change in tone. Come along a bit more recently I did it again out of frustration and my ear now reacts to certain tones by ringing. Even more recently my ear seems to distort sound with a wobble. It's incredibly frustrating and is actually worse than my tinnitus. I'm a fucking fool for doing what I did but I felt like I had no escape.

live

 

I'm starting to believe I've developed TTTS in my right ear and am currently trying broadband noise (namely rain sounds) for hours a day to try and get my ear to not be concerned and protective. On day three today and minimal result, if any.

 

There's one answer - No hard candy.
I had to sleep on my right side for two years. If I slept on my left, my right ear would flutter like crazy and no way could I sleep.
The reason was H. The furnace and night time 'house' noises irritated my right ear. Would you believe it took 2 years to figure out that with my right ear on the pillow I was OK? Who would think that such quiet sounds would be irritating? So I put cotton in an ear if it's fluttering. The last 2 days I've been ok, lots of ringing but that's normal for me. I fully expect I'll be H-ing again in a couple days. I was in my garage today and my buddy started banging on some steel with a big hammer. He's known me since before I had T, in the early 70's, but still - he forgot.
I've got a bad case but didn't hear it today except now sitting in my chair typing, and when I first got up this morning.

 

Sorry if I missed the part about the cause in the post, Packy. I don't know anyone around where you are unfortunately. That said, CBT isn't for everyone of course (and maybe something like TRT would be better), but I'd urge you not to knock it till you try it. For me, "accepting" my t, if you want to call it that, though really I'm not sure habituation is necessarily acceptance, was the greatest gift.

Even if you're going to keep looking for a physical cure, try to be kind to yourself. The truth is, there isn't a cure out there right now. Harming yourself physically probably isn't going to help in the long run. Maybe try taking some anti-oxidants, eating well, getting some exercise and giving your body the tools to heal itself as well as it can. The ear and the brain are so delicate and complex and anything that is going to help is probably going to take some time (more like months to years than days to weeks).

Of course that's all just my two cents, I hope whatever path you choose you feel better soon.

 

Ev

Everything I've read about CBT is all about stress reduction and acceptance. I have no intention of just accepting things as they are. If I just 'habituate' to me that's the same as giving up. Just like with this ear distortion I am experiencing. I'm not just going to take this lying down and I want answers. My fear is I won't be able to resolve or find these answers. I've already been insulted several times by the very professionals who are supposed to be up to date and knowledgeable. These people make large amounts of money for their expertise and their contribution. Often, the irony is a lot of the surgery these people employ causes tinnitus and ear distortion. And yet they are allowed to treat patients with no knowledge of how to prevent and or resolve the tinnitus signal. Here I am typing and my ear is distorting. My heart is crushed and my emotions blown with rage. And do any of those ENTs really give two shits about what happens to me? I highly doubt it. The whole field is a glorified joke. Even hearing aids are substandard.

 

I hate myself for the self harm I inflicted upon myself. I have no idea if it caused these current issues, but I hate myself for it. But no one had any intention of helping me not did they care.