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

I’m ok. Mainly this new tone is very reactive no matter what I do. I have quiet periods, then chaos all over again. If I go through quiet periods, the tinnitus will calm but hyperacusis gets very sensitive. If I expose to sound, my hyperacusis improves some but tinnitus goes haywire. Then a semi loud exposure will bring me back down in tolerance and slowly worsening tinnitus permanently. Cycle just repeats lol.

 

That sounds like an absolute nightmare. I'm still trying to understand what's setting off my pain sometimes. My tinnitus is worse now since my hyperacusis is worse but I get varying degrees of pain and I find it hard to understand why sometimes.

After wearing earmuffs all day, the tinnitus sometimes really drives me insane. Then I take them off and try to let in a little noise but that sets off huge pain. Going to try and have a more focused approach to it I guess.

I just got a recommendation to check out a program by Dr. Perreau so might look into that now and see if I can get some use out of it.

 

It’s like you gotta find a balance to subjecting yourself to noise plus not making your tinnitus way worse. I’ve been slowly introducing sound as much as my tinnitus has let me.

 

Yup, it’s going to have to be low and slow for us.

 

Last time I was this bad I did get a lot better after a couple months by just avoiding loud noise for a while.

I'm going to order some BPC-157 and TB-500 now. Some people saw great benefit from it. It should be an interesting experiment.

Do you do any type of therapy now? I find it hard to do it when I can't even listen to the lowest level noise without causing pain myself, but when I could tolerate low level noises, it really helped.

 

Did some today and my ears said screw you lol. Hope it works for you.

 

Damn, that sucks. Similar story here. I tried adding a little bit of sound yesterday for a few minutes but I guess it was too loud because my ears have been in burning pain all day today in silence. Or maybe it's because my phone fell onto the floor off my bed this morning, not sure.

In a few days I will try again but I want to just take it super slow now.

 

Try lowest volume for 10 minutes and log it. See if you spike later.

 

What I was doing before actually was playing sound at the lowest volume while still wearing earmuffs. I think that was working better for me. I had no pain for an entire day so then tried without earmuffs and no bueno.

Pain is better so far today anyway. Gonna just take it slow indeed.

 

No pain today? Just enjoy the day and avoid sound for now. Let your body relax for a bit before sending the army again lol.

 

Do you think noxacusis comes from an inflamed middle ear? Like does the pain come when your middle ear reacts?

 

I've been thinking about this exactly the past few days and I'm not sure. At first I thought the pain was coming from damaged nerves in my inner ear but now thinking maybe it could be something in the middle ear, like my ear drum or that tensor tympanic muscle. Especially since I had fluttering in my ear in the acute phase of my setback. That's surely TTTS.

This is why I ordered some BPC-157 and TB-500. I'm going to take them orally, subcutaneous and as ear drops to try and maybe fight some of the inflammation. The fact that it changes so often and how it gets better over time seems like it's inflammation to me but I'm no doctor.

I see why CBT or just trying to stay calm might help the pain. Maybe the pain is caused by stress when you expect noise. Because that muscle tenses when it expects noise and if it's always tense, then maybe that's causing pain.

 

The pain is still there but a lot better than yesterday. Just taking it easy so far today. I'm feeling a bit better mentally now too since I have a plan to try and get better so maybe that's helping as well.

It's just sometimes the pain goes away so I feel like I'm better and expose to a little noise but then it sends me right back into pain again for hours and hours. I know it'll improve eventually though as long as I persist.

I feel like we all just need to find out what our own limits are by ourselves and then try to push it slowly whenever we can. It's a very tricky balancing act.

 

Yup, it’s very tricky. Especially when some of us get worse while trying to figure it out, then having to constantly adjust the plan before it’s too late. Sucks haha.

 

It seriously does suck big time lol. Even the doctors I went to didn't even really say anything about this part specifically. Now I can't even drive to a new doctor if I wanted because it hurts too much lol. Maybe I could though, haven't tried in like a month but might be ok.

 

That's what I'm thinking but I don't have ear pain anymore so I don't have much room to say anything.

 

The pain could be from both. I do think the burning pain is nerve damage though because it is a common description of all types of nerve damage. It does go away for me too but as it's gotten worse it takes less noise to make it come back.

I found a new peptide, ARA-290, that is supposed to be good for nerve pain and it's just going into Phase 3 trials now but you can actually buy it so I might test it out too. It's very expensive though, ends up at about $20 a day per dose and might need to be taken for months.

 

Diabetes and Hearing Loss

I wanted to post this link as I have been having diabetic episodes and it could potentially be a factor in my worsening.

 

What are your diabetic episodes like? Do you believe diabetes can be part of what causes severe intrusive reactive tinnitus?

 

I was pre diabetic years ago and I’ve been abusing sugar and caffeine even more now. I get very bad low blood sugar episodes where I feel like fainting sometimes after eating higher carbs. I’m always thirsty and pee a lot. Tingly feet and hands.

 

Wish I had a plan what to do next. Digital noise bothers me so pretty much all ear maskers, phone sounds (pink, brown, white) irritate me most of the time.

Do I just sit in silence? Do I go for walks to get sound? Is TV ok with earplugs or no sound at all?

I try not to think of my sounds as they are becoming higher frequency over time and it’s depressing.

No route for healing I guess... I just don’t want to get worse until regeneration comes in 2066.

CBT? I acknowledge the sounds... they suck... I’m ok with hating it. Lol.

 

What about soft, soothing music? Can you listen to that?

 

It's tough man. My kids are older so they understand to try not to be too loud. I pretty much sit in silence all day everyday. Absolutely avoid any sounds from electronics. Cellphone speakers and little computer fans are the worst!

 

Some days I can but I still try to avoid due to digital. Are you able to?

Does that include talking on the phone? Watching TV? What do the little fans do to you? Does your tinnitus get louder or do the tones squeal or get aggravated?

Also, have you had any improvement?

 

I can but feel I shouldn't because it's still noise and I think my ears need a break.

 

@SmallRonnie, sorry to hear that, it is a tricky balance to get right.

Could you tell more details of how your attempt at hyperacusis desensitization didn't work? I'd like to know because I am in a not too dissimilar a position and would rather not push things.

 

I was doing CBT. I saw a therapist for 2 sessions. She was telling me to get back to my life. I was avoiding lots of things before so I started to try and be more normal. I went to a bar once, not too loud, didn't wear earplugs though, had some slight pain the next day but nothing serious.

I started playing music a bit louder on my speakers while I was lifting weights at home. Sometimes re-racking the weights was loud. I was driving my car, with a loud exhaust, without earplugs. I was exposed to my dog barking several times which was very loud. Fire alarm went off when I wasn't wearing hearing protection too.

I don't know what caused it exactly but I went back to square one again after being much better for a while. I had massive pain again for almost 2 months.

The pain is much better now though, but I still have slight aches.

I was getting some warning signals last time with pain where I should have protected my hearing more but I didn't. Now I will just protect my hearing more when I think I should. If I manage to avoid the things that triggered me before I will probably be fine.

 

Thanks for that information. It's amazing how these snippets can help others.

I'm staying in the house for the time being and am being careful about sounds I expose myself to. At the same time; with hyperacusis desensitisation you need to allow your ears to hear enough sound to get sound tolerances back to normal.

I understand it's a long process.

Is there anything, when in your house, that you will not expose your ears to and will always earmuff up - for example in kitchen or flushing in bathroom?

 

I was using earmuffs a lot of the time when I was in worse pain but not really sure if it was doing anything. I use earmuffs if I'm near the dogs because they can start barking like crazy at any moment but that's all.

The slowly desensitizing thing doesn't apply to me, I don't think. I just get massive pain if exposed to too loud of a noise and it just goes away over a certain amount of time. I don't get pain from every sound. If I do, I turn it down, but never sure if something is actually causing it because I get pain in silence too.

I'm just hoping I continue to recover like this and try to avoid massive setbacks. I wear hearing protection driving all the time now, but I was fine driving without hearing protection when I was recovering before.

 

@SmallRonnie, are you using Dr. Perreau's program or her PowerPoint slides with your audiologist? I emailed her but since she's licensed out of state, I can't legally see her for CBT, and she never replied to my last email. She recommended my audiologist use the slides on the University of Iowa website to do CBT with me, but my audiologist won't do virtual visits with me.