My Hyperacusis Journal — Sound Therapy and CBT with Tracy Holcomb (Treble Health)

Are in-ear generators the same as hearing aids?

 

Yeah I believe so, just without the amplification.

 

You can get them without the amplication.

 

Do you have the Widex Zen? That's what I have. Haven't used them much. I'm wondering, since they connect to my phone, if someone would call if it would go through the WNG.

 

Wouldn't it be better to get hearing aids that can do white noise? That way you have at least some hearing protection provided by the hearing aid rather than the open-ear design of the noise generator? Or do noise generators have the same type of earpiece?

 

Yeah it’s the same thing as a hearing aid. I’ve had both now.

 

Did your audiologist say that noise color didn't matter? Mine did but I don't really believe it. I know white noise is harsher than pink, and that pink is usually the standard for hyperacusis. But do any of these things even have a pink noise setting?

 

White noise makes mine go haywire, like tones and louder. Pink noise sometimes does that, but not always. Violet noise kinda masks it and chills it out. She said to use what doesn't aggravate mine, and it can be normal for certain sounds to bother at times. Just to rest ears if that happens or take breaks.

Hyperacusis is like fine tuning daily to allow sounds, not over protect but still do protect when needed, and not over do it with sounds. Annoying process for sure.

 

So yours has specific colored noise settings? What model are they? Mine only have white noise, the Signia Pure 312 X. Quietest setting is too loud for me.

 

I’ve just been using my phone as I haven’t adjusted mine yet with the audiologist.

They are Phonak ones.

 

Using musician's earplugs instead of foam earplugs and doing more sound therapy seems to be pissing off my tinnitus. Sharper, more piercing spikes. Need to back off again.

 

Same fluctuations. Good days, bad days, good days, bad days. Pink and violet noise are irritating or making my tinnitus harsher about 50% of the time. Frustrating to say the least.

 

Seems quietest is too loud for me as well. When it’s in my ear I’m feeling like little jolts around my head near the ear lol, like it’s bothering it.

 

I had to go to my audiologist to get them reprogrammed to be the absolute quietest. They are tolerable now volume-wise but I can only tolerate about 5-10 minutes before I get ear burning, nerve triggers in my usual problem areas outside of my ears and head. I've had my exploding head symptoms each night I've used them so far. Tinnitus has been more volatile, plus imprints of the sound generator noise onto my pre-existing tones.

Might have to bite the bullet and get yours reprogrammed, though I know it's a hassle. Hope things can improve for you eventually...

 

Yeah I will try once more and then make them quieter if need be. I will try maybe 5 minutes.

What nerve triggers are you feeling?

You and I have to start from the bottom of the bottom.

 

I am curious Wrfortiscue, do your sound generators have a volume control so you're able to adjust it yourself, or is the volume set by your audiologist?

 

I visited an audiologist yesterday and asked about sound generators. I told him my concern about my tinnitus being reactive. He suggested I get hearing aids with white noise generators instead, since I have mild hearing loss in the high pitches. He referred me to a doctor that specializes in tinnitus to get my hearings aids from. He said she ought to reduce the amplification of the pitches that cause my reactivity and hopefully get a pair that has volume-controllable white noise generation. So that's my next step.

 

They have a volume button. She said she can lower them even more as the lowest setting sounded louder than previous ones I tried. I kept feeling like jolts by my ears, not sure if nerve related or anxiety from sound so close.

 

Be careful about the amplification. It’s a mic turned up to receive those sounds. I have hearing loss too and the extra sound would spike me.

 

Thanks for the warning @Wrfortiscue - I'll be sure to mention my concern about the amplification. I'm hoping to start with really modest amplification. If that works well enough and doesn't exacerbate my reactivity and doesn't cause any spikes, I'll try increasing the amplification.

 

Thanks for the information Wrfortiscue. Once you are able to use the sound generators on the lowest setting, you can slowly increase the wearing time. You have to see what works for you. If you can wear them for 5 or 10 minutes, rest the ears for the same amount of time then wear them for another 5 or 10 minutes and do this throughout the day. Slowly increase the wearing time until you are able to achieve 6 hours or more.

I know this might seem tedious but stick with it. @Eleanor89 was having difficulty wearing sound generators due to her ears being so sensitive. She tried this method and has been making steady improvement.

Best of luck,
Michael

 

Yeah for sure. I have no other choice and the audiologist said what you pretty much did. So round 2 I go lol.

Thanks.

 

Take things slowly Wrfortiscue and you will get there. Even if there are hiccups along the way, don't let that stop you. Dust yourself down and keep on trying. It took 4 years for me to habituate the second time. On many occasions I felt like throwing in the towel but I carried on regardless. Gradually my good days became more than the bad days and I could see light at the end of the tunnel, where once there was only darkness.

 

Hey Wrfortiscue, remind me again... On goods days, what severity level would you rank your tinnitus? Can it be near silence for you?

 

If you can believe it, my left arm. I have really funky things going on with my nerves ever since the accident that caused my hyperacusis. It's the left side of my upper body and head. My hyperacusis is worse on my left ear too. So I think some kind of nerve damage is coinciding with whatever nerves are damaged for my ear-brain or something. My arm will be burning after I do the generators. It's a mystery within a mystery and I doubt it'll ever get sorted.

Last night, hours after doing the sound generators for only a few minutes, my tinnitus sounded ungodly. Still hard to imagine keeping at it for 8 hours. I might try Michael's advice for the 5-10 minutes throughout the day, but even just 5-10 minutes once per day is getting to me.

Since I still live in such a noisy and unpredictable house, it's hard for me to ditch protection. I still don't know what to believe about under/over protection, especially since noise has only harmed me, but I fear that using it at all, especially at night when I need it most to sleep, will impede any progress. How has your experience with protection weaning been?

 

I’ve only had maybe 3 near silent days, one of them being recent. My usual good days are just soft tones and usually I can ignore them. Not as reactive either. Average days is just good and bad periods. Bad days it’s just a harsh buzzsaw and pinging noises with up and down loud ringing.

 

Thanks. I am trying. Did you ever have bad periods after having steadily making good progress? Also do I have to use in-ear generators for life?

 

I’m sorry to hear that. Yeah, that nerve thing reminds me when you scratch your head and feel pain in your arm or chest lol. Happens to me and it’s odd.

As for protection, I try to wean off or mix it up and usually spike the next day. My spikes just mean harsher left ear tone or more reactivity. If I plug up too much, I’m really sensitive. It’s going to be a slow balance I assume.

Try to do a couple of minutes of sound therapy. Maybe pull the sound generators out some so it’s not so deep in the canal. Ask whoever set them up to put the lowest of lowest sound. Could be the frequency aggravating it.

Surprisingly doing the sound generators today, they weren’t loud like yesterday and there were periods where my harsh cutting blade tone wasn’t piercing through; it was fading back. Then my left ear pulsated some pain so I stopped (after 30 minutes).

If my ear gets a little sore, I stop. She said it’s part of the process and another friend who went through this reactivity had sore ears at first and adjusted. He’s better now.

As per usual YMMV.

Tomorrow I see how my ears are if I do another 30 minutes or so. If spiked, I’ll just do therapy with natural sounds and no earplugs, then resume the next day.

 

Hi @Shizune, I read about your accident and I'm familiar with that. Did any specialists (neurology) examine peripheral nervous system (PNS) and somatic nervous system? Reflex tests to evaluate sensory signals? This is important as some fibers connect to ears. I can go into more detail, but most PNS nerves that would be associated with your situations should hopefully regenerate. Sleep, fluids, magnesium, a little B12, slow walking exercise and staying relaxed should help. When deciding to discontinue a medication, do a taper.

 

I see, I somewhat similar. A good day for me is still moderate tinnitus. It’s still very much perceivable, but tinnitus tones are more tolerable and not as reactive. I don’t have quiet days. It’s not like I care for silence anyways.