1 Year with Tinnitus — Finally Getting Used to It and Hyperacusis

Thought I'd join and share where I can help others. 1 year down, and I'm finally getting used to it. The hyperacusis has also improved. Nice to meet you all!

 

Sounds like you are habituating, which is great.

Any tips on what has worked, and what has not?

 

Welcome to the forum @Diesel. Good to hear the positive story from you. Congratulation! Perhaps you can write a detail success story to help others learn some of your strategies to 'get used to' tinnitus which we call habituation. You can also share how you cope with hyperacusis and what you did to help it improve over time. This way it will help all new tinnitus and hyperacusis sufferers.

 

I think the big things for me have been mostly mental/behavioral. Accepting the condition, understanding that I am not in danger, and that I have a lot of control to keep it from getting worse. I have had to learn to forgive myself for unknowingly harming my hearing from years and years from living a very loud lifestyle irresponsibly. The damage accumulates, and when we're young, we don't always realize the long term effects of naive decisions.

I also look at the -believe-it-or-not- positive outcomes that have come in my life since the diagnosis. I took inventory of the good and bad, in the past year, I have improved my diet, lost weight, worked out more, don't drink as much, spent more time with family, focused on doing a lot of personal 'housekeeping.' And learned how to enjoy doing things that might involve 'loud stuff' safely.

As for the Hyperacusis, it still comes and goes but it has improved and I have generally habituated to the little sounds that seem too loud or maybe cause a slight bit of pain. At the very beginning, everything seemed too loud. My wife's voice, silverware, the TV on the lowest volume setting, even the road noise my truck tires make (otherwise not a loud truck). At the time, I wouldn't dare go to any noisy public place.

I learned about listening to pink noise and slowly turning up the volume over months, which I did for about 3-4 months. I also learned that keeping the ears stimulated with sound at all times seems to keep the hyperacusis down, and tolerance levels up. So, while I work, I'm always listening to music (at a responsible level), a podcast, or similar. At home, music is always playing or the TV is on. Nowadays, restaurants and public places aren't so bad any more.

I also have a lot of hope that a clinically-proven treatment or treatments are not too far off in the distance. Consider in just the last few years how many new developments have popped up in the Research section. That gives me a lot of hope that Tinnitus and Hyperacusis may not be forever for many of us.

 

I am very happy for you. Congrats. I’ve had hyperacusis and tinnitus for last 9 months. Did you listen to pink noise with ear buds ?

I tried TRT but could not handle the pink noise coming out of ear level generators. Stopped. Feel better listening to it on phone app. What device do you listen to pink noise on? How many hours per day do you listen to pink noise while home? How about when out and about do/did you use any sound?

I know exactly what you mean by it comes and goes. One day stepping on leaves ok next day no way.

Also how is sleep? Did you seek any CBT therapy as well? When did you realize you were habituating? How loud is your tinnitus? How was it caused? Is there anything you told yourself or repeated everyday to keep you focused on habituating?

Any advice is greatly appreciated. You give me hope. Again congrats.

 

Good question on the pink noise. I listened to it awake for an hour a day each morning with a set of Sony MDR-7506 headphones. I also have a SoundSleep SE in my bedroom that produces pink noise. I listen to it each night to help me fall asleep. I am not clear on any evidence that listening to pink noise while sleeping does anything, but it atleast masks the tinnitus sound.

I do take CBD or melatonin to sleep sometimes, but not as often as I used to. Having a good nights sleep does seem to help keep my mind in check throughout the day, and my attitude positive. I swear there is a correlation between having a good nights sleep + good attitude and the tinnitus being less annoying/loud and the random hyperacusis events being more bearable / less frequent.

I realized I was habituating when it just seemed 'normal' recently over the past few months. And I preferred to focus on what I was doing and not the sound. It's still not foolproof, sometimes I get caught off guard by a minor 'spike', but my reaction hovers around a 'normal' range, and I can work through it.

My sound is the whole gamut from 14Khz to 20Khz and sounds like TV static or air leaking from a tire, or the upper end of white noise in that range. It can get pretty loud at times, and other times be fairly quiet. I can't seem to predict it.

How I got tinnitus. The long story is, most of my late teens and early 20's, I was a huge live music enthusiast. I figured recently that between 16 and 25, I probably attended in the ballpark of 200+ live concerts. This doesn't include local live gigs at bar, which I also frequented. And loud clubs and numerous discotecas that I frequented along the Spanish/Mediterranean coast line (those were the days.) In those days, ear plugs were not a common thing, or at least not in my group of concertgoers. I also rode loud dirtbikes and motorcycles from 18 through my mid-30's, one motorcycle I can remember would often make my ears ring temporarily, but I didn't think much of it. And fellow cyclists that I know experience this, and also don't think much of it. Finally, I am a bit of a DIYer, and have been since I was young. So, I have accumulated power tools for wood working, automotive servicing, metal working, and landscaping, among others. While I have always been pretty good about hearing protection, there were times where I probably didn't realize how loud a tool/machine was looking back.

What finally got me to the ENT was after an air tool malfunctioned unexpectedly creating a screeching loud noise right by my head. I woke up the next morning and it was clear something was different. I went to an ENT a little while later after the sound kept coming back, and it was at that point, considering my history I realized, it was probably just a matter of time. The good news is, my audiograms do not show any notable/substantial hearing loss up to 12khz.

As it relates to CBT. I am familiar with the practice, but did fine reading books about using my cognitions to stay in control of my stream of consciousness. Talk therapy can work for many, and I highly recommend it. One book I found useful is called, "Rewire Your Anxious Brain" by Pittmann. It provides a lot of insight into the relationship between the frontal cortex and amygdala. I am not sure how much it is discussed in this forum, but it seems to me that keeping the amygdala at bay, and the hormones it produces, as a lot to do with the daily management of tinnitus and Hyperacusis.

Once things 'stabilized' for me about mid-way through 2019. I started to remind myself that this is the new normal and I need to accept it. After a while, things do seem pretty normal and the tinnitus goes on the backburner. I've also been pragmatic about internally working through concerns that I have, whether rational or irrational. The goal is to stay as 'on-par' as I can every day and into the future.

I am definitely human, and still experience anxiety about some changes relating to this condition. But I know over time those thoughts will become normal. An example is like wearing filtered earplugs to a wedding or a loud bar is kind of odd for me, but it's not the worst thing in the world. In reality, everyone at those types of events should probably be wearing earplugs!

Hope this helps. Hang in there.

 

Hey Diesel, welcome. You seem to be a strong, mentally healthy person with the right approach to this condition. I'm glad to hear you're improving!

I absolutely agree. I'm a Lenire user which has definitely helped me, even though it's not a cure and doesn't seem to work for everybody. But it's a very promising first sign. I expect Lenire itself to have future, enhanced versions based on the data they're gathering now; other companies releasing improved/alternative devices of the same type (bimodal stimulation); and whole new types of treatment also hitting the market (e.g. regenerative therapies). The end is near, and in a good way.

I remember skiing ~5 years ago when everyone was wearing cloth caps and mocking the losers with helmets. Now, they don't even let you on many slopes without a helmet! Safety culture evolves. I expect earplugs/earmuffs to gain similar widespread adoption at parties etc. (Or maybe, they'll just turn down the fucking volume!!! Lol.)

 

Diesel,
Thank you for taking the time to provide a detailed response. WOW. I truly appreciate it. My text is long , I apologize but I wanted to address all your points
Listening to pink noise is the best thing you can do besides wearing ear level sound generators. I tried to wear generators but it was not a good experience. I like your approach. You listen to pink noise 1 hour in morning. Then listen to it at night on sound machine to sleep. You are getting a steady stream of it all night and a last call, if you will, with a 1 hour shot in the morning with headphones. Great! When I stopped TRT ear level generators my doc said listen to pink noise on sound machine and/or phone app to treat hyperacusis but it’s not as fast as TRT. Ok. I can live with that. This was also confirmed by another leading audiologist, as a sound way to treat it. A leading Dr responded to a question I had about discomfort with generators and he said listen to pink noise, any broadband noise on sound machine or phone app to treat hyperacusis. It was also recommended to listen to nature sounds at times, as a nice balance of sound. At night, I listen to stream on Oasis sound machine. I now take melatonin at bedtime but think I really don’t need it now. When get up I alternate between sound machine and phone app listening to music, and nature sounds all day when home. When home i devote a couple hours to pink noise at low level. In the past when I went out to store I’d wear generators. Now, I wear nothing. The audiologist I recently went to told me to constantly play noise and recommended open ear headphones or bone conductor headphones for when I go out. She said either was good because they do not completely cut off the canal. I have yet to wear them out. I’ve tried the bone conductor feels ok but have to lower volume a bit, but decide not to wear them either outside. I did not follow this audiologists advice because TRT clinician said expose your ears to normal sounds. Big part of treating hyperacusis is to desensitized the ears. So I don’t wear anything out but have ear plugs just in case. It sounds like you do not listen to sounds when you are out of house when going to environments where sounds are not excessively loud. Do you listen to noise on phone app or other device when out? Hey I like to know because whatever you are doing is working. So other than 1 hour in the morning that is all the pink noise you listen to during the day and it’s working. Fantastic!!!

On May 20, 2019, I got tinnitus from ingesting a ototoxin for stomach condition. On day 3 of a 14 day prescription bam ringing. So bad went to emergency room. They gave me a choose behavioral Unit or figure it out. I took door number 2. They introduce me to the world of antidepressant Xanax. Got home now have to figure out how to sleep without Xanax. In terms of sleep, the first 7 1/2 months I slept maybe 6 hours in seven days. I would go 3 days straight with no sleep. I purchased every OTC sleeping med and natural sleep aids, Valerian root, L tryptophan, CBD. They worked for a day , then next day nothing. I increased dosage, no sleep. I tried all this because I did not what to take prescribed Xanax. Eventually, I had no choice. I begrudgingly took 1 mg at night for sleep. LOL. I did not fall a sleep till the sun came up. Then did not get up till 4 pm feeling like crap. I’ve been an earlier riser all my life and this was totally demoralizing to get up in the evening. Doc switched me to trazedone at night and lexapro during the day. Did it one day, no sleep but was dizzy the next day. I passed out hit head on corner wood table. Lucky wife was home because I bleed. That was it for them. Doc then put me back on Xanax. I spent a total 8 weeks on it. Weaned off of it in August 2019. Then again I struggled with sleep until i stopped TRT in January 2020. Sleep is so crucial in the healing process for ears.

All of this occurred 13 months after retiring. Worked 34 years, retire bam ring. Prior to this never spent one night in hospital. Very healthy and active
I still have some morning where hyperacusis is noticeable but lower even after a good night sleep. On days like this I can stand dishes and paper items in the morning and mid day. They are louder than normal but not bad. I notice as it gets closer to the evening its more sounds are significantly louder and sharper. And like you said about your wife’s voice my wife’s voice is loud particularly at night. Sometimes I have to stop talking because my voice at night causes a sore in my left ear. But it only last a few seconds then it’s fine. For some reason tonight hyperacusis is not bad, talked to wife for 6 hours with no problem or soreness. It is nights like this you are now God’s got this and shows you are healing.

So the last few month there has been change because you choose the way you respond. You are habituating. You are coping and pushing it in the background. That is progress!! Sounds like the books helped you to “control your stream of consciousness”. I like that phrase. What were those books? I will definitely get the book you recommended regarding the relationship between the frontal cortex and amygdala. I am really looking forward to reading how keeping amygdala and the hormones it produces at bay to better manage hyperacusis and tinnitus. I will purchase any other suggested books. Did you talk to a therapist? I tried several therapist but have not quite found the right person. I was trying to find someone with our condition or at least some experience with it.

You have quite an array of sounds and volumes. Before TRT I had high pitch ring that was so piecing it caused ear pain in left ear. It would only fluctuate at night and then I had to focus on something to lower it. I could not sleep. Now ring is a hiss/static and lower. Every now and then I get a high pitch sonic burst and then it fades within seconds. Doc said it’s normal. If you say so. LOL.

You have had quite the adventurous life. You gone to more concerts than I’ve gone to live events in my life. Wow. Talked about fun. Discotecas Spanish/Mediterranean coast. NICE. Dirt bikes and motorcycles. I always wanted one as a kid and teen. DIYer I hear that. That’s me around the house. I do it all. woodwork is cool. Nothing like creating your vision with your hands. Life is twist and turns. The fact that you heard the ring due to malfunction of a air tool while performing something that brought you joy . Trust me, things happen the way they are supposed to happen. My whole circuitous journey here is a testament to things happen the way they are supposed to. We may not like it nor see the utility at the time but close your eyes, humble yourself to this time in your life to everything and everybody and you will come out of this better than you could ever image.

Great about no hearing loss up 12 kHz. Wow most standard audiogram only go up to 8 kHz. That’s great man. Mine was 8 kHz with no hearing loss. I am going to get the expanded audiogram at our local university, which goes up to 20 kHz. My hearing is too good. If bird drops a load in his bowels, I’ll hear it. LOL.

It sounds like mid 2019 was the pivotal moment for you. You accepted the ring as your new norm. That’s the goal. Great. You’ve become more realistic about conscious thoughts both rational and irrational. That's it. Write them down if necessary. The irrational thought is the ego. When they come realize that your thought are not you. Ego only see what wrong not right. It’s never satisfied. Take stock in what blessings you have before you. That is the key to try and stay on par each day and in the future. Sounds like you are doing it. Did any specific book or advice help you to get to this mental state? Your words and thought process is so on point. Acceptance, and adapting to change. wow. Your tinnitus has became your back drop. What did you say to yourself each day up to the point it faded behind you? Because you thoughts and what you said each day was the medicine you needed and I need it. I am slowly getting better but need a little bump up. You are human and anxious moments may come with it and you will handle them and they will go back behind you as a product of normalization. Tribulation bring about experience; experience brings about patience. Your thought on the filter ear plugs for the wedding is the right approach. Yes, our circumstances could be far worse.

Well keep it going. When I say this I mean it, I am proud of you. I know your wife is do relieved. That’s got to make you feel great seeing her small again. Situations like this bring you not only closer to those you love but more importantly to yourself and your faith. I love to see tears replaced with a smiles on beautiful wife face. God Bless you Diesel. I pray that TOMORROW is TODAY for a viable cure for us all. It’s time well overdue!!! Be well.

 

Forgive the typos started this at 4:00am. Texting while bedroom lights were off. Plus eyes are not what they use to be.

 

Damn dude, you had a pretty good run, I must say. I went to a whopping total of 3 loud metal shows (in small venues) before breaking my ears at age 26. Only other abuse my ears have taken would be from the basic, rinkydink LPG forklifts and electric reach trucks (70-82 dB) I drove at work without ear protection for 2 years.

Do you suspect you have any hidden hearing loss (ie. cochlear synaptopothy)?

 

Yeah, I consider myself lucky to some extent. Even when my ENT asked about my history with noise exposure, he said “you really dodged a few bullets!”

I have not given too much thought to the precise type of damage I am experiencing. My pure tone audiogram looked “good”, and I did well in the words in noise test. I have figured to this point that I probably have the garden-variety SNHL/NIHL and tinnitus is the symptom.

 

Can someone explain to me how for two straight days no hyperacusis symptoms. ZERO. Also, each day no noticeable ring. Last night zero ring but woke up with headache over left eye, hyperacusis symptoms, and low hiss ring. I never get headaches. I do not understand.

 

Have you ruled out TMJ? I saw someone on Twitter say they had Hyperacusis for a year from TMJ

Mine also fluctuates a lot. Sometimes my head is like a field of cicadas and once in a while I almost get silence but it always comes back with a vengeance

 

My tinnitus and hyperacusis was caused by ingesting an ototoxin.

it’s crazy how it fluctuates. One day stepping on leaves ok next ughhh. Last two days zero hyperacusis symptoms. I keep hearing that the healing process is not lineal, there are ups and downs. So, we have to hold onto such statements.

 

I still wonder if my Hyperacusis is caused by something else.

A lot of the time when I swallow my ears tend to clog up even more, kinda like that feeling when you do the Valsalva and that increase of pressure comes in and can’t be relieved unless you swallow. So the pressure builds up and relieves almost at the same time

 

What’s interesting with your hyperacusis is that in one of your post you mentioned having a hypersensitive reaction to cabbie chewing gun before the onset of hyperacusis. I am just wondering if your exceptional hearing is really the culprit. But then again that would not account for the physical sensations you feel when you swallow. When my hyperacusis is at its worse each swallows sounds like a smack in my ears.

 

Just reading this now, can you tell me when you would use earplugs? Would you tough it out when watching tv and talking around the house? Thanks.