"Shifting" or "reactive" tinnitus issues.

[thesynthfreq]

Hi. My name is Danielle and I wear 2 Phonak Naida V Ups. I love my hearing aids to pieces and wear them 24/7, well almost. LOL Anyway, I am trying to sort out an issue that I have had for about 14 years, but worse in the last few years. When I have my hearing aids in, my left ear that has the worse loss (90-110 db) and a Eustachian tube dysfunction problem that is painful at times, seems to get aggrivated when sound is coming into my hearing aids. Every time I talk, sound comes into my hearing aids, and pretty much anything that makes sound will cause my nerve in my ear to make this shifting tinnitus sound. Its always there, making the same 5 or 6 tones that ring in my ears and when sound comes in, the pitch of my tinnitus shifts up a few tones, then when there is no sound being picked up by the hearing aid, the tones go back to ringing like before, about 5 or 6 different sounds all together. I cant go without my hearing aids since this weird tinnitus thing will drive me crazy and make me in a bad mood and frustrated. I also will put my hearing aids on "T" since it kills the microphones, and picks up interference which actually cancels out my tinnitus altogether. Its the only time I get relief from it. I hear this with any hearing aids in. My left ear doesn't get much help from a hearing aid except for getting the sensation of sound, sometimes loud sounds tickle the inside of my ear even though the sound is not seemingly loud to me. My right ear wont do it as bad but my left ear, also has zero pressure in it, a negative peak on the test, parts of an eardrum since it deteriorated on its own, without pain, which I am still very shocked that it can happen like that. I also get this intense pain in the side of my neck where the Eustachian is, and it feels like an intense pressure that wont let up, very painful. It will hurt for hours, sometimes a few days. I cant keep a hearing aid in it when it hurts like that.
Anyone with the same "shifting or reactive tinnitus" thing?

 

[defgrl]

"screwy" ears

Wow! Sometimes I put my HA's on "t-coil" and the "buzzing" covers up the tinnitus. I, too, sense vibrations in my ears as well as hearing sound through my HA's. It helps me "keep time" better when I play percussion in a local "community band." I will often keep my hand on a cymbal, so that I do not play too loudly (by accident). Sometimes the other percussionists will tell me it hurts their ears. I most likely have something called AN/AD. I DEFINITELY have some "timing issues" in my hearing system. That is on top of the "loss" itself, and the "unexpected" difficulty with understanding speech. I find it laughable that some people think I have "normal" hearing. How someone with normal hearing could wear hearing aids and STILL play percussion too loudly in a band is beyond me.

 

[thesynthfreq]

Thanks so much for replying to my post. Defgrl
I thinks its so funny that you also put your hearing aids on "T" it works so well for canceling out tinnitus. My tinnitus is so loud without my hearing aids in. Its so loud that it makes me in a bad mood and makes it hard to sleep. lol
I think its great that you are in the band. I actually play synthesizers and electronic drum machines that I program and write music with. I have played synthesizers and other electronic instruments for 20 years. Even though I have days when my hearing is bad, I still play music everyday. Some days really frustrate me though. Sometimes I cant get the speaker loud enough at all and my hearing friend says that she cant stand the level of loudness, but to me, its not loud enough. I have the studio loud speaker only 2 feet away from me at all times. I also use the Icom that goes with my hearing aids to hear music directly into my hearing aids but sometimes its not loud enough either. Anyway, I have the "too loud" problem too. lol When I talk, I am always told that I am talking too loud even though my hearing aids are on. When I take my hearing aids off or am not wearing them, which is rarely, I talk too loud then too. I am working on not talking so loud, I used to talk too softly, but not now. lol My left ear is crap. If I take out my right hearing aid, and leave my left one in, I cant really make use of what I am hearing, I just feel noise in my ear.
So, for now I just use the "t" coil setting to get rid of my tinnitus and the weird up and down pitches that I hear whenever sound comes into my ears. I guess there is nothing that the audiologist can do about it. Its probly a nerve dying or something. lol I think its when your hair cells in your cochlea die, your brain tries to make up for the loss, by aggrivating fibers next to the dead ones and that is what you hear, the sounds are the nerves. I know there is a term for this, I will have to think of it. I know it, but just cant recall it right now. lol
Anyway, hope you have a great day.

TSF

 

[Anij]

One thing that might be helpful for managing your tinnitus at night is using a noise machine - or "noise machine CD" (better for severe hearing loss)

Noise machines play a number of different sounds including waterfalls, rain & thunderstorms, waves crashing on a beach as well as "white noise" and "pink noise".

For those that are Hoh (or deaf, but able to hear a CD player turned all the way up without their hearing aids in) getting or making a CD with these sounds on them wil lbe better than getting a sound machine unit ... because the units aren't able to be turned up loud enough for us to use.


Honestly - unless you or someone you know has done work with audio editing before ... Id recommend just looking for a pre-made CD ... they're fairly easy to find in stores or online (buy from reputable online stores to make sure you're getting a proper CD not someone's "homemade" amateur CD)


If you or someone you know DOES have audio editing experience ... here's a basic outline - however you should already be familiar with this:
To make a sound CD yourself (or have a hearing friend/family member make one for you) - you can look online for some free wav. (or mp3 if your CD player plays MP3s) sound clips of the noise/sound or noises/sounds you want (rain, white noise, pink noise etc)

Then download the clips/audio tracks and import/open them a free downloadable audio program called "Audacity" (by Sound Forge).

Once you have the clip opened into the Audacity program simply take the short clip and copy it - lining it up so that it sounds like a loop with no "hiccups" at any edit points, including the point where the track ends and then restarts (this is the tricky part).

You'll want to make a single track that ends up being either 50mins (if you want only one sound per CD) or about 10mins if you want a few different sounds on 1 CD.

Once this is done, just burn the CD and your ready to go


Then at night - you take out your hearing aids & turn up the noise CD to a level that you can hear, but only just enough that it is audible over your tinnitus.

*It's VERY important that you don't sleep with your HAs in - because your ears need to "breathe" at night to prevent infection etc. which can lead to more hearing loss ... as well as infections that may spread.

If you have to hear sounds at night (infant/child, phone/door/smoke alarm etc)- look into and get a visual signalling system (Sonic Alert etc) which will allow you to visually see the sounds (or if in bed have the option of also feeling them via a strong vibrating "puck" placed under the mattress/pillow.

 

[thesynthfreq]

Hi Anij
Thanks for your reply. Lots of helpful info.
My tinnitus is so loud that the only thing that helps 100% are my hearing aids on "t". I tried listening to the tv but it has to be so loud, that my hearing room mate could still hear it through headphones, in the next room. lol Both my studio headphones do not work well anymore since I sent such a high volume through them. The speaker elements in them are fried. I bought $92 headphones that are for studio monitoring and they output up to 100db but the kind of white noise, even pink noise would need to be shifted down since higher frequencies are impossible to hear. I program synthesizers in my studio, I am thinking of creating white noise waveforms (2 oscillators) and shifting them down by an octave and then recording it that way. The only thing is, is that in order to hear the sound that is loud enough to drown out my tinnitus, I would have to wear my hearing aids and the Icom or wear the ear buds that I have, and I would still have to have something in my ears while I am sleeping to be able to hear it.
I have tinnitus all the time no matter what, hearing aids in or not. Its this wierd sine wave sounding frequency that seems to be resistant to being drown out completely except for with my hearing aids that are set at a high volume for my loss. I feel like my auditory nerves are just reacting and getting aggrevated to sound instead of processing it although its just certain frequencies. Where my hearing is better, I dont notice this issue so much. My left ear, which is worse, also hears a chirping sound, other times I feel a low thundering kind of sound deep in my ear. I do not have a functioning eardrum in that ear since it fell apart with no pain or anything, it deteriorated in only 8 months. I only found this out when I complained to my audi that I can no longer hear my voice with my hearing aids in and that I feel that I am in a room with no air in it. I was told I have 0 pressure in that ear. You are supposed to have positive pressure to move your eardrum at all.
Anyway, I will look into a way to make a white noise waveform, which is really every frequency in the spectrum all set to equal volume, and shift it down an octave (1200 cents) and see if it works.
TSF

 

[Anij]

One thing you might want to look into is asking your Audie if it would be at all possible to do a CHEAP OPEN FIT hearing aid for you to wear at night on T ... or something like that.

They might even be able to get something VERY cheap from a HA manufacturer that is specifically for that purpose (or re-purpose a "broken" HA where the Tcoil setting still makes noise)

The advantage to the open fit is that it's just a tiny tube that goes into the ear - not a standard mould that traps moisture etc and can lead to issues including infection. You wouldn't have to worry about sound quality or other issues like mic feedback because you'd only be using it in T mode.


Personally - I use a CD recording I made (using Protools I think?) of a thunder & rain storm ... I find that the various noises from that are enough to distract me ... and even if it IS loud enough for someone in another room to hear it ... it just sounds like a super quite rain storm to them (which they promise me doesn't both them)

 

[thesynthfreq]

@Anij
Yes the idea of an old or broken hearing aid with a functioning "t" coil is helpful and I have a set of 14 year old hearing aids from when my hearing was better. I cant hear with them now, but they have dead microphones in both of them. I dropped one and stopped working, the other just stopped working from being old. They both just make noise and dont really bring in much outside noise. I guess I can try them and see if its loud enough to drown out my insanely loud tinnitus. lol I think that I would have to be careful with wearing hearing aids to sleep (the old ones) then when I wake up, put my new ones in. I can also try getting the earmolds that have an opening in them, my Phonak hearing aids cant use them since the feedback would be rediculus, but maybe for the old hearing aids, it would work. I also have to turn my hearing aids to "t" during the day a few times a day especially when I am traveling outside or when I am in a noisy place. My audiologist wasn't going to recommend a hearing aid for my left ear, since its in such bad shape inside. I decided to go with two hearing aids so that my balance would be better and so I can have "some" help with my left ear, but maybe wearing a powerful hearing aid in that ear is just not going to do what I hoped.
I am kind of stuck, of I wear my hearing aid in that ear, then I hear the "shifting tinnitus" issue, if I take it out, then I go right back to hearing the usual tinnitus from my hearing loss.
Switching my hearing aids to "t" a few times a day seems to help at least temporarily.
Listening to music through my Icom really helps too. I use my Icom for TV (even though I cant understand everything people say) and i use the Icom for writing music with my synthesizers.

 

[Anij]

thesynthfrq

Keep in mind that the most important part about using the old HAs over night (if you really need them to sleep) is getting them fitted with an open-fit ear mould ... you need to allow your ears to dry out (literally, because HA mould trap moisture in the ear which can cause infection and hearing trouble during the day).

I'd really suggest making an appointment with your Audie - to discuss the issue with your HAs (in the other post) and get them adjusted, have a new Audiogram done to see if your HL has changed and also see what suggestions they have regarding creating a sound that will help you sleep (without sealing off your ears). Your Audie can help - but only if you fill them in on what's happening ... and be adamant about trying various sound options that will help you sleep.


Regarding Tinnitus:

One thing people tend to minimize is how many variables can cause and increase tinnitus. Some MAJOR factors that can dramatically increase tinnitus are:

Food & Drink

Caffeine & Tanins- found in: tea, coffee, most cola/soda/pop, wines, many medications

Chocolate - milk or dark (not white)

Alcohol - anything with alcohol in it including: wines, beers, coolers, liqueurs etc

Dehydration ... most people are chronically mildly dehydrated ... increasing water intake 8-10glasses of water/day can help A LOT

Aspartame/Splenda etc - many people find that cutting out artificial sweeteners makes a dramatic reduction in their tinnitus



Life, Sleep, Stress

Exhaustion is a major factor in tinnitus ... if you don't get enough good quality sleep, your tinnitus WILL increase. If you have chronic sleep issues, see a doctor for help.

Stress - minimizing the stress in your life & finding healthy ways to deal with stress (exercise, yoga, massage, meditation etc) can greatly reduce tinnitus.

Life - Tinnitus is a tricky thing - spending too much time in loud places, not taking care of ourselves physically and mentally, improper diet, overworking, not resting etc all can have a HUGE impact on the amount of tinnitus we are faced with on a daily basis. Reducing "known triggers" can drop tinnitus from an "unbearable level" to "very quiet" or at times even "tinnitus-free" for many many people. The hardest things is taking the time and self-discipline to try eliminating the various common triggers (caffiene is a HUGE trigger) from our lives. In most cases the "trigger" must be gone from your diet/life for at least 2 weeks before you will notice a big difference ... however it's possible to start noticing subtle decreases in a few days (note: withdrawing from caffiene often leads to a mild headache for e a few days - this is normal and will go away).

I'm not saying that you'll be able to get rid of the tinnitus - however with some work, it's very likely that you'll be able to reduce the intensity of it

Hope that helps !!