Still Alive and Doing Better! Hyperacusis and Pain Have Reduced by About 75%!

@Sydney13, it sounds like you have found some good activities, and I did a lot of the same stuff.

At first all I could do was color, cross words and puzzles so I did A LOT of that. When I started walking outside I did lots of nature walks and hikes, and I thought of them as physical therapy for my ears. I also organized my house from top to bottom. I pretty much did whatever I could to keep myself as busy as possible. Once I was pretty comfortable on my walks I also started gradually socializing more and more as my ears allowed.

I’m still doing very well, thanks for asking

 

Hi @ErikaS -- I've done extensive craniosacral therapy (even prior to getting tinnitus), and many other things to help calm my body/mind. In case you're interested, you can check out the following two posts of mine. In them I describe a simple spiritual technique that works well for me (similar to meditation, but much easier). -- Take care!

Post 1 -- Post 2

I might just add that occasionally when I sing the song of HUUuuuuuu (out loud) that I describe in the above links, I actually feel a soft, gentle (and might I say healing) vibration in my inner ears. Almost like a pleasant tingle. Doesn't happen every time, but when it does, it feels really soothing.

Hi @Marin -- Thanks for this thread, and for your continuing updates. Much of your thinking and health approach orientations are very similar to mine, and I can relate to so much of what you're sharing. Always looking for innovative approaches that will yield helpful insights into these challenges we all face here on Tinnitus Talk.

P.S. This also works well for me:

Tone Pacer PRO App — Has a Very Soothing Effect on My Auditory Cortex

 

I'm so happy you're finding things a lot better.

I have a question on the beeps and reactive side of things.

I have the hiss, an electrical sound, and beeps at the moment, all being reactive, as in they compete with external sounds! Did this calm down for you?

Many thanks.

 

Thanks so much, @Marin. My TRT consult is this Wednesday, I am really hoping to feel a ray of hope from it as I am not doing well mentally.

I wanted to ask you, did your reactive, multi-tone tinnitus start to improve before you weaned off of Klonopin and the other meds, or was it after? I am on a small dose of Ativan (0.25mg) a day for the past 4 months and sometimes I wonder if it’s holding my brain back from healing or making my reactive tinnitus worse. My goal is to get reactivity down, then hopefully some tones to fade.

 

Hi @ErikaS,

2 years ago, I tried a pair of hearing aids, and it has substantially reduced the ringing in my ears. The good thing is that you will know within 10 minutes of using them if they will help you or not. Every hearing aid specialist will let you try them for free for two weeks.

Tony

 

@pez, yes, all of those noises have calmed down a lot. I can hear the hissing in my hearing loss ear pretty much over anything if I "look" for it, but I don't expect that to go away because the hearing loss is so severe and I've habituated to it. I can only hear the tinnitus in my "good" ear in silent rooms. The tinnitus in that ear is a beeping or variable tone tone, but it must be pretty quiet since I can't hear it with any kind of background noise.

 

It's been so long now I can't remember exactly, but I do think Klonopin did help temporarily with the tinnitus, but it would ramp back up again when the dose wore off. The tinnitus really started to improve for me when I got out of silence and hearing more and more sounds.

I hope your appointment goes well! I will say that I never used any kind of pink or brown noise because it really hurt my ears. I was still able to desensitize using music, nature, and every day sounds. I guess I'm saying just don't push yourself to listen to pink or brown noise if it's painful. Wishing you the best of luck!

 

Marin, good to see you on the forum again and that you're doing well. Still love your profile picture!

 

Thanks @Anthony2019, glad they helped you so much! I fear that my hearing loss in right ear is too high for hearing aids to help (around 12,000 Hz) and I also have other tones around 2,000-2,700 Hz, all variable and reactive. Not sure hearing aids can work with reactive tinnitus.

Was your static hiss reactive to external sounds or did they not have an effect on it?

 

My static hiss was not reactive to external sounds.

My frequency loss in both ears is around 8,000 Hz.

 

Hi @Marin! Thank you so much for posting your story! I’m in a similar situation as you were before, maybe not too extreme (horrible hyperacusis, homebound, isolation, nothing that I have tried has helped, like pink noise or gradual exposure). I saw some other people with similar conditions that had success with neural retraining and now I’m starting DNRS too.

I would like to ask if you had some worsenings/setbacks during the incremental trainings and how long they lasted?

Did you have ear fullness too? My ear fullness changes a lot; sometimes it is in one ear, sometimes the other, sometimes none and sometimes both. Very annoying.

I hope you are living your best life now! I love how you made a different approach and got better from such a horrible state.

 

Brian, does your hyperacusis spike your tinnitus? If so, for how long?

@Nick47, wondering the same for you.

 

Marin,

Did you notice a reduction in the number of tones you had once your hyperacusis got better? How long did some tones stick around for?

I am in a similar situation, pretty much housebound from hyperacusis, although I got it from damn Klonopin so I'm not sure if that means it will get better quicker than noise-induced hyperacusis.

EDIT:

Nevermind, I read through the whole thread and you specified that once your hyperacusis got better, your tinnitus did too.

Thanks!

 

Hi @Marin, I hope you’re still doing better than ever. Do you know what exactly the homeopath you went to gave you that helped?

 

Pulsatilla 200c.

She wrote that in a message on the first page.

 

Hi @Marin,

Thanks so much for sharing your inspiring recovery journey! Since acquiring loudness and pain hyperacusis and reactive tinnitus approximately six months ago, I've returned to read your story many, many times to help keep a sense of hope alive.

I'm wondering whether you could possibly provide some more details about how you went about re-introducing music into your life? My ears seem to be particularly sensitive to artificial audio (even from a higher end audio system), which is really frustrating for me because it is really limiting in terms of applying sound therapy (for both the hyperacusis and tinnitus). I noticed that you went from listening to no music to listening to music all day, every day within just five months and am wondering how you were able to get to this stage so quickly. The following details would be greatly appreciated (and any others you'd like to share about your process!):

- From the time you began desensitizing to music (as in, actually exposing yourself to it), how many months in total did it take you to get to the point of listening to it all day, every day?

- What was your process like in terms of increasing listening time and volume? For example, did you increase the listening time and/or volume by specific intervals, and if so, what were they?

- If you experienced any significant ear discomfort during or after exposure (including the day after), did you still continue with exposure or give your ears some time 'off'?

Thanks again so much for sharing, and I sincerely hope you're continuing to do well!



Sincerely,
Maddy

 

Your audiogram is almost exactly the same as mine.

Right ear:
250 Hz - 3000 Hz 0-15 dB.
4000 Hz - 75 dB
6000 Hz - 90 dB
8000 Hz - 110 dB

Left ear normal.

 

Hey @Marin, I know you don't sign in often much anymore (great for you!) but just in case you do soon, I wanted to ask some specific DNRS questions with regards to our conditions. I completed the course and am starting practice...

1. When doing the actual rounds, did you talk out loud to yourself at first, or did you say the sayings in your head? Just me talking, even softly, can make my tinnitus change character or become distracting that I get annoyed or angry about it, which is what I want to avoid as I am doing a round, especially in the beginning. I know talking out loud was very hard/not possible for you at your worst, so I just wanted to see how you went about that.

2. In terms of very gradual exposure, whether it was incremental training or just going about the practice, how were you able to control the sounds of your environment so well? I fortunately live in a quiet home, but neighbors use power tools outside, husband showers and does his daily things, and I have been fortunate to not have to live in my house with ear protection but am wondering if I need to for this practice and to try to control sound exposure more.

3. Because our conditions are constant ITs, how did you maneuver/overcome this in practice? Would you stick to the hour of rounds and then just positive distractions? I am VERY much struggling with keeping positive outlook, completing rounds with a smile on my face and not getting frustrated or crying, etc. I guess I am just still afraid to completely buy into this with the fear that it may not help my reactivity. That's honestly the thing I want to diminish the most, if I could have tinnitus that doesn't react/change to sound I would be so happy.

Thank you for any feedback!

 

My apologies for not seeing this sooner. I hope you are in a better place now. It has been quite awhile since I desensitized to music, and I don’t remember exactly how long the whole process took. I’ll try to answer your questions as best as I can remember.

When I started desensitizing I couldn’t tolerate any artificial audio at all so I can relate to how frustrating it is to have that limitation. When I first started listening to music again, I used a very high quality speaker (Sonos), I played it at a volume so low no one else in the room could even hear it, and I picked acoustic music that I LOVED. At first I played only one song and then stopped. I very gradually increased the length of listening time and volume over days, weeks, and months as I felt more and more comfortable. I find that I’m still gradually increasing the volume after two years.

I didn’t have a specific strategy about how much I’d allow myself to increase the volume or for how long. I mostly went with what felt right. I’m sorry I can’t give you a more concrete answer!

Ultimately, I think what helped me the most was to focus on how much I loved each song I listened to. I really tried to get into each song and feel all the good feelings that the music gave me.

Early on if I felt a lot of discomfort I would ease up on the desensitization, and then I’d start back up when I felt ready. Eventually, I felt good enough to where I stopped taking breaks all together.

Interesting! May I ask if you know what caused your hearing loss?

When I first started the rounds, my own voice could my ears burn terribly, but I tried whisper as much of my rounds as I could. Some days I could whisper more than others. If I was having a particularly rough day, I'd whisper the steps, but say the visualizations in my head. I think trying to say as much as I could out loud helped A LOT with my tolerance for speaking. Over time, I was able to talk louder and louder and for longer and longer. Eventually, I got to a point where I was visualizing myself listening to music and I was able to sing out loud. I know it sounds goofy, but it felt incredible to once again be able to do something like that that I used to take for granted.

My family tried to be as considerate and quiet as possible, but ultimately I didn't have a whole lot of control over my environment. I had the showering husband (and children), neighbors who worked in their garages and in their yards, etc. At first I was stuck in hearing protection 24/7, and I had to work really hard to get out of it. So, I don't think I'd recommend adding it if you aren't already using it to get by. When those types of exposures happened, I tried my best to redirect my attention. I'd tell myself, "No one else is being hurt by these noises, why should I be?", or I'd do a partial of full round to distract myself. I'd also put a big fake smile on my face because my brain didn't know that the smile was fake. I fake smiled a lot in those first few months. I must have looked so creepy, lol.

I did exactly that - did my one hour of rounds, did my best to interrupt any unhelpful thoughts (POPs), and redirected my attention to positive distractions when symptoms increased. I completely understand how hard it is to try to keep a positive outlook! I cried in a lot of my rounds early on because I felt so freaking sad and defeated. It really was a fulltime job trying to keep myself distracted and to avoid focusing on the symptoms, but thankfully, it became easier with lots of practice. The fear of not improving or getting worse can be a big roadblock, and I had it too. I interrupted those types of thoughts, and I replaced them with "This is going to work," "I don't care if the tinnitus gets louder, I'd much rather be out living than stuck inside". One of the most helpful things I did when I was getting started was to stay off of the tinnitus & hyperacusis forums (I know how that sounds!), and instead I read a lot of neural retraining forums. I learned so much from reading about others' experiences and what worked for them. It didn't matter if their physical symptoms were different than mine. They were focusing on healing their limbic systems which is what I wanted to do.

 

Thank you so much Marin for sharing all of this. I hope you are still doing so well and continue to progress with minimal to no setbacks! I pray I can be in your position in the near future.

 

Thanks so much for sharing @Marin! Would you mind sharing what artist(s) you listened to to start? Maybe, just maybe, they'll work for me too

Also, did you initially get fullness & burning building in your ears within seconds of starting the music? This happens to me (even with volume 1 music), & it's so discouraging. So I don't know whether I should stay away from digital audio longer to allow my ears to heal, or start to desensitize very slowly.

I'm also wondering whether you ever experienced any prolonged numbness in your face? I developed this symptom recently, & it's quite concerning. It's not a full numbness, but a partial one, & kind of feels like my face is sunburned.

On another note, how are you doing these days?

Smiles,
Maddy

 

@Marin, thank you for your continuing updates and wisdom! It means a lot to those of us who are not nearly as far along on the journey to healing.

If I could piggyback on the audio questions posed by @ErikaS and @MadeleineHope, do you have any thoughts on how to desensitize yourself to certain pitches or tones in music? After I got tinnitus and noxacusis, I discovered that it was excruciatingly painful for me to listen to music videos on YouTube. Especially high-pitched female voices and high-pitched musical tones.

I then tried to administer myself some sound therapy at home by avoiding songs with high notes and female voices and seeking out songs with low-pitched melodies sung by all-male bands. But even then, that was a failure. After listening to male singing voices for only twenty minutes, I would still get a burning sensation in my ears, even if the volume was low. Since then, I have given up on music, although I do listen to other types of YouTube videos or podcasts where people talk. I just keep the volume as low as possible and rely primarily on the captions to understand what they're saying.

At present, I test my sound tolerance once in a while by listening to this video, which is not a music video, per se, but a mathematical pendulum animation that just happens to incorporate sound effects at a predictable interval. It starts out with a single tone that you hear several times, and then that tone gets higher and higher, but in incredibly small increments that you barely notice. I like this video because there are no sudden, unexpected sounds, just a slow introduction of increasingly high pitches at an interval that is easily memorized, so I can pause the video or mute it when it starts to hurt. To date, I have never made it all the way to the end. There always comes a point where the "ding" starts to cause pain.

(1) "Galaxy" - A Pendulum Animation - YouTube

On a very bad day where my ears are extra sensitive, I still watch the video, but on mute, just because the visuals are relaxing to my eyes.

 

Hi @MadeleineHope, the first album I really tried to desensitize to was Chris Cornell's live acoustic album. I picked it because it is just vocals and a guitar, and I love that album. I can't remember what music I picked next. For me, the most important thing was to pick music that triggered lots of good feelings.

When I was at my worst, artificial audio immediately triggered all of those awful symptoms. I went over a whole year without music or sound on the TV and it was absolutely miserable. When I started desensitizing with music, I had already been improving by working with natural sounds. I had also been incorporating music into my DNRS visualizations which I honestly think helped a lot. For example, I'd visualize myself feeling happy while driving and listening to my favorite music. I honestly can't remember if those symptoms were triggered immediately when I went to listen to the Chris Cornell album that first time, but they would get triggered if I listened for too long.

You could try to desensitize to music by listening for only a second at a time, and then immediately after think about or do something that evokes strong feelings of happiness and joy to redirect your brain away from any bad symptoms that may be triggered. If you are hesitant or fearful of triggering symptoms it will be counterproductive.

Another option would be to focus on natural sounds first to strengthen your ears before you attempt listening to music. It's totally up to you, and what you think will work best for your ears.

Oh yes, I had that, too, plus, burning. It was very uncomfortable and honestly, scary. I have heard from several other people with hyperacusis who have similar symptoms, and I really do think it is a limbic thing. I had an "ah ha" moment when I started learning about DNRS, I read a post from one woman who said her face and body burned when she was exposed to household cleaners. She got much better with DNRS and desensitization, and here story gave me more confidence that it would work for me, too.

I am still doing very well, thank you I find that I am still improving little by little, and most days I don't notice my ears at all. I spent Father's Day with my family boating on a lake, and I am extremely grateful to be able to do so.

 

Hi @ECP,

I didn't focus on any specific tones or pitches in music so I'm sorry that I don't have advice for that. I made sure that I was using high quality speakers and the highest quality music that I had available to me. I could be wrong, but I suspect that YouTube music might not be of the best sound quality and harder on the ears?

When I started, I picked music that was slower and with male voices. I eventually worked my way up to music that was faster, with more electronic sounds, and female voices. The most important thing to me was that the music made me feel good.

If your ears start to hurt after 20 minutes, then stop at that point. Try listening to music right up until that point of discomfort, and then stop. After a few days, try adding on another 30 seconds or minute of music, and so on. It is very tedious, but thinking of it as physical therapy for my ears helped me keep working at it.

I was only able to listen to about 10 seconds of that video before it bothered me. Personally, pure tones are still uncomfortable for my ears, and I don't feel the need to work on fixing that since I rarely encounter those pure tones in real life. Music and real nature sounds have worked best for me.

 

Thank you @Marin. Not many people have stuck around on the board long enough to tell us what it's like on the other side of this ordeal, so we sure do appreciate your words of encouragement and advice.

You bring up a good point about trying to listen to music that we enjoy, and to focus on positive thoughts pertaining to an unrelated subject while we listen to music in order to distract and desensitize our brains from the anxiety of listening to music in the first place. It's all too easy to associate all music with pain, and that can't be good for the limbic system. I need to make graduated exposure to music more of a priority again, starting with low-pitched voices and melodies. In hindsight, I probably tried exposing myself to music too soon when I should have stayed in silence more. Maybe now I can handle music better? I won't know unless I have the willingness to try again.

I don't know if YouTube sound quality in general is poor, it could just be that I've always relied on the built-in speakers on my laptop, and they are not top-of-the-line speakers at all. Plenty of people here have said that it helps to buy better speakers to reduce ear discomfort, and if I can be honest, what's held me back from following through on that advice is resentment. When I think about how much money I've already spent on vitamins, supplements, medical copays, etc., I feel bitter at the thought of having to upgrade my audio equipment on top of everything else. I hate how this acoustic injury has created so many unanticipated expenses, some of which did little or nothing to alleviate my symptoms, so now, when I get the idea to buy something new, I balk at the thought of having my hopes dashed again.

I'm sorry that the pendulum video hurt your ears in just the first ten seconds. You're right, we don't often get exposed to pure tones like that in real life, so we may not need to actively habituate to them. I think I got hung up on making that my goal because "Eternal Flame" by the Bangles is one of my most pain-inducing songs ever. Unlike most pop songs, which rely on drums and bass to keep the beat, that song uses a triangle from start to finish, and the recurring sound of the "ding" hurts so much. I've liked that song ever since it came out 34 years ago, and I keep hoping I can learn to like it again.

For now, I am sort of okay with outdoor sounds in nature, and that will have to do until I figure out how to move forward with music.

Thanks again, Marin, for showing us that recovery is possible.

 

Hi @Marin,

That's amazing that you were able to go out boating with your family! I'm so happy for you for how far you've come

Thank you, thank you, thank you for coming back here every so often to share your experience & recovery journey. It makes such a positive difference for many of us here who are currently going through our hardest times with this condition.

I haven't been able to find many cases of people with the facial numbness & burning, so it's a relief to know you had it too & it eventually went away! Mine is a full-face partial numbness/burning/stiffness that has persisted for about a few weeks now, & only seems to have gotten worse. Was yours like this too? It certainly is scary!

And, if I may ask, how are you with the phone these days? Are you able to use your cell phone on speakerphone, for instance, or do you use an external speaker to take calls?

Thanks again & so glad to hear you're continuing to do so well! Sending positive thoughts for continued healing your way!

Maddy

P.S. Thought of some more questions that I'd greatly appreciate your feedback on (though I completely understand if this is too much; please just ignore them if it is )

- Were you sometimes exposed to fire alarms or similarly loud sounds during your recovery journey? If so, what was your experience like with these very loud events?

- Did certain sounds ever sound plain nasty to you, like nails on a chalkboard? Some sounds are like this for me... I think it's the high frequency sounds.

- I also seem to be able to hear electricity now, as crazy as it sounds... & quite loudly too! Did you ever experience that & did it eventually go away?

- How do you manage your fear of really loud sounds these days (e.g., fire alarms, sirens, potential vehicle collision & airbag deployment)? I struggle with this quite a bit.

 

Yes, those were some of the facial symptoms I had. Honestly, if I focus on my face now, I can still feel a tiny bit of tingling on the right side of my face which is my hearing loss side. It is much, much, much less than it used to be, and I can go weeks and months without noticing it now.

Unfortunately, phone speakers are still problematic, but I also haven't made a significant effort to try to desensitize to them, either. I can thankfully make short phone calls without giving it a second thought now, but I wouldn't be able to be on a phone all day for work.

I hadn't been exposed to a fire alarm until this last month. While I was in another room of the house it wasn't too bad, but when I stood under it to try to get it to turn it off it hurt my ears. I ended up going outside to wait for my husband to turn it off. My ears were sore and a little raw for a few hours afterward, but went back to their baseline by the next day.

Last year I attended a small festival and parade where the police and fire departments turned their siren's on and even shot off a few blanks. That was rough, and I was even a little shellshocked afterwards... headache, dizziness, nausea, ear burning and rawness, etc. I thankfully bounced back pretty quickly and was able to enjoy the rest of my day after taking a quick rest and having a cocktail or two.

Yeah, I've never liked the chalkboard sound... who can tolerate that sound?! Many years ago I remember my ears burning when shooting with hearing protection on. I only did it that once and I don't plan to do it ever again.

Yes! I felt like I was going crazy hearing those sound no one else could. I could hear electrical buzzing from most electronics and there was one spot in my hallway that had an electrical hum. I couldn't even use some of my TV's on silent because their electrical hums were too painful. I don't hear any of that anymore.

DNRS has been an absolute lifesaver for practically eliminating my fear and anxiety of loud sounds. The only time those bad feelings creep back nowadays is when I spend time on here or chatting with someone about hyperacusis. When that happens, I disconnect again and try to do a few DNRS rounds to get me back on track.

Wishing you the best, @MadeleineHope. Sending you a big virtual hug.

 

When I first turned to Tinnitus Talk a year and a half ago for my wacky tinnitus and hyperacusis, I thought @Marin's post was the craziest thing I had ever read. Now, I am well on my way out of hyperacusis and tinnitus, and I only find it flares up when I am stressed/overstimulated. I can easily "control" it now by slowing down, doing my own version of "the rounds," feeling my feelings rather than trying to overcome them, and reminding myself that so many people like @Marin and other mind-body/brain retraining folks have healed through the same methods.

I am back to my normal life, even if I still have some lingering symptoms. They come and go, and it's all related to my internal state. I'm confident I'll get there as my happiness continues to grow. I got reactive tinnitus/hyperacusis during some pretty serious depression that started to lift about 9 months ago. Life is good! Keep the faith!

 

Thanks so much for sharing all of this @Marin! It's comforting reading how someone overcame symptoms so similar to mine

Haha, yeah, I think the nails on chalkboard sound is one that universally sounds nasty! For me, there are lot of other sounds (I think high frequency ones) that sound similarly nasty... did you ever experience this? If so, did these sounds eventually start to sound normal again?

That's truly amazing that you were able to overcome all of those truly loud sounds with such time-limited symptoms! I think it really shows how far you've come

If I may ask, are you able to work these days? Or are you currently focusing on taking care of your home & family? I don't have a family of my own & am unable to currently work, so it's hard thinking about how I will support myself in the future - especially with the artificial audio issues

I also worry about things like going to the dentist in the future & being able to take the odd medication here & there when necessary... what's your experience in these areas been?

Sorry for all of the questions; again, I totally understand if it's too much & you need a break for a while or forever, haha

Sending a big virtual hug right back at you, & continuing to send healing thoughts too!

Thanks again,
Maddy

 

@OnlyUP, thanks for popping by to share an update on your progress! I'd love to hear more about your recovery journey & where you're at now, if you're willing to share

Smiles,
Maddy