From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis

Hi @Bishop, thank you for your kind words and the affirmation of some of the points I was making in my posts. Yes, we need to play a smart game with the mind to not let T dominate and traumatize it as much as possible. Some of the strategies and exercises I did are designed to minimize T to convince the brain to not react so negatively to save the body of all the other unpleasant symptoms from anxiety, panic attacks, depression etc. Once we are dealing with T only as a sound, the path to habituation is open and sooner or later, the brain will tell T to take a ticket when it is busy with something. Thanks again for your comment. Have a great day!

 

Thank you brother. For taking the time to consolidate all this truth here. I am feeling more hopeful about overcoming this affliction. Peace to you.

 

Peace to you too brother. Keep up the hope irregardless of the present trials and tribulations of T. If we keep positive and learn to ignore T, it will eventually wear down its tyranny on us. I was at its mercy before but today I kick its butt. Keep up the faith. You can do it brother. Take good care. God bless your recovery.

 

Billie48 remarkable story,I have only one question.How do you succeed in ignoring your T so that id does not bother you anymore.I could easily do that when my T was very low but how can you ignore it when it is high? Do you just pretend it is not there?Or do you just say I don't care anymore?

 

That is basically what I said mentally to my T if I ever have to respond to it,something like the 'Back to Silence' approach. This is a form of 'mindfulness' when we say 'I hear it but I don't care' and the heck with T by ignoring it. Often when we do that habitually, the brain will learn to fade T out of consciousness when you don't pay attention to it anymore, and it will be even easier if your mind is busy with something. This will take time though.

 

Thanks Billie48 You are an inspiration to all of us .God bless you.

 

Thanks @Tony for the kind word. Just doing what I can like others to help those in need of some encouragement. God bless you too brother.

 

Billie48, in all honesty THANK YOU. Your post managed to get me out of my deep hole yesterday. Today's not as good as yesterday was but to see that there can be days like yesterday is SO ENCOURAGING. After reading your post my T almost completely went away. It's all in our mindsets. And God's grace is still there, even if we are not in our minds .

 

Loud noises make me feel very uncomfortable and scary without any pain . Is that Hyperacusis or phonophobia@ Does anybody know?
Even people talking loud in cafeterias make me uncomfortablle .

 

Perhaps you could create a thread with this very question rather than post the same question multiple time across multiple threads?

 

@billie48
What a fantastic thread! Thank you for posting it.

Mystery Reader

 

Sorry I missed your message. Thanks for the kind words. Wish that your condition has improved. Take care. God bless.

 

I would gladly give all the money I have in the bank,my life savings if somebody would make me how I was a few years ago free me from this torture called Tinnitus and Hyperacusis.

 

I have deep empathy for your suffering, brother. Let's just hope that the medical world will come up with something in foreseeable future that can reduce or eliminate intrusive tinnitus, one that doesn't have to break our bank. But in the mean time, we just have to find whatever means that work to reduce the suffering or to achieve some level of habituation. God bless.

 

Billie48, I am in dire need of some help with my hyperacusis + tinnitus. I have been struggling for 5 months and I feel as though my case is severe but understand it is subjective. The next part that I am struggling with is the fact that I am a dentist. My T and hyperacusis is so loud that I can indeed hear it above the drill. Although I have managed to still provide services to the public, I am indeed struggling to make it through each day. My audiologist told me that it was worst she had seen in 20 years. I know I worship and awesome God and he hasn't provided me with an awesome family yet somehow I don't understand how I will make it through this thing. I would like to reach out and speak to someone who has suffered and survived this beast. My heart goes out to your loss and though I have never lost a son, I did lose a wife in 2009 which God graciously helped me through. At any rate I am in dire need and appreciate all you have shared on the forum.

 

Hi Billie 48.I hope you dont mind me asking you a personal question.Because all the stories I have heard from people who recovered from hyperacusis were from fairly young people in their twenties , at what age did your H go?If it is too personal you dont have to answer.Thank you.

 

Another thing when I try to get used to normal everyday sounds my T spikes for weeks.I suppose I should do it more gently.

 

@MHall ,
Sorry I am late in replying. I didn't know you have a comment. If you had tagged me with @billie48 instead of just Billie48, I would have been notified that you have tagged me and I would be able to respond faster. Sorry to hear you are suffering so much with your T and H. But you are still relatively new to the 'life' of T & H. So there is no need to rush yourself on recovery. When I was in the first year, I was relying on taking meds such as Ativan & Prozac plus sleeping pills just to get by each day. I was under relentless anxiety and panic attacks most of the time due to my prior condition of anxiety and panic disorder plus PTSD. So you are doing much better than me at 5 months as you don't seem to be needing drugs to function. Don't count on one audiologist's statement as if his/her opinion on your condition is bible. There are many people with severe condition of T & H and have recovered or regained the ability to live a normal life after some time. But it is quite common for sufferers of intrusive T & H to be in quite a lot of mental and emotional struggle some of whom may not even be able to work. A while ago, we have Dr. Charlie White who is a retired ENT with T & H and he seems to be doing well. You can search his name to see if you can re-read his posts and what he did for his H. Here is his first post on this forum:

https://www.tinnitustalk.com/threads/dr-charlie-—-ent-specialist-with-tinnitus.6935/

You may also want to read Dr. Hubbard's success story to get some idea how he has gotten better with his severe condition. I provide the link to his story below:

https://www.tinnitustalk.com/threads/how-cbt-helped-me-live-again-dr-hubbards-story.4608/

There is also Dr. Ancill's earlier post in which he shares what works for him. Both of these two doctors are in the Doctor's Corner and can answer members' questions.

https://www.tinnitustalk.com/threads/curing-tinnitus.4136/page-5#post-40854

Personally I find that CBT/Mindfulness is a good way to help us moderate our reaction to T & H. It may not eliminate the condition but it does help to relax us so the stress level is not too excessive to trigger the limbic system and the Amygdala to take over and make things worse. The rest is just time plus some strategies. Reading the success stories will give us some idea of the common strategies out there for T & H.

With respect to your situation, having H and needing to use the dentist drill may present a problem. Perhaps you can seek out the best professional grade earplugs or earmuffs to help. If you have to hear the drill noise to some extent, then musician earplugs can help to buffer the exposure of the drill noise and yet filter out the extreme ranges. I do have deep empathy to your dilemma and pain dealing with the initial months of T & H. Hopefully, like most people who get both T & H, that the H will slowly fade over time. Protect yourself reasonably against loud noises or venues but do try to take in the normal, ambient sounds of the environment so you won't be over-protecting which can risk developing sound sensitivity issue. Take good care. God bless.

 

Hi Tony, let's just say that I am not young now as I am a grandfather. Lol. Suffice to say I developed my T & H beyond 50. It seems that H would come from developing T due to acoustic trauma and a really high pitched T will usually be accompanied by H soon after. I suppose we have to use wisdom on a personal basis. While we advise people to protect from the loud noises or venues, but not to over-protect to avoid developing sound sensitivity, only you will know how much your ears can take before it hurts. Use prudence to try to achieve progress in a pace that your ears can handle. Some may take more time than others to get more hardened to sounds without getting H worse.

 

Thank you Billie48 you are a lifesaver.Iam also a grandfather and that gives me hope because I thought only very young people manage to overcome H.Lol.and God bless you brother.

 

Thank you Tony for the good words. I am not a lifesaver, just someone sharing my experience with T and H, hopefully helpful for others to cope better. Hope you are doing better.

 

@billie48 I know it's an old thread but this one is timeless, i accidently stumbled on your post and it's one of the best guides written for overcoming anxiety, tinnitus and hyperacusis and actually every chronic illness there is and I've read a lot!
Tons of respect to you and what you have gone through and accomplished!
It makes me think about a book I read which helped me intensely when going through the depths of anxiety : at last a life by Paul David.

 

Very encouraging and heartening. Thank you for this, @billie48

 

I'm 3 months in with tinnitus and I recently developed hyperacusis about 2 weeks ago. Reading this was such an inspiration and brought tears to my eyes. Thanks Billie.

 

That's an incredible story. I also have intrusive tinnitus (the type of tinnitus you can over pretty much anything else), but for unknown reasons, i had been able to habituate/not paying attention for several years until last month when it came back.

 

Sorry for replying late to your post. If you had tag me with @billie48 then I would have been alerted of this message from you.

Hope your recent spike has subsided. If there is anything I can help please let me know. Thanks.

 

@billie48
Hi Billie,
I've suffered from anxiety for most of my adult life so my journey of tinnitus and hyperacusis and TTTS has been a very long road so far. I don't recall if you ever had the thumping of TTTS from your story but could certainly understand tinnitus and hyperacusis.

My tinnitus journey started back in Fall of 2017. After a period of having a cold, I noticed the foreign ringing in my ear. I've had ringing before after head colds, loud venues, etc. so I thought nothing of it. After a couple of weeks I started panicking a little bit and then went to an ENT, who like many on this forum looked at me in a puzzled way, tested my hearing and sent me on my way. I got a sinus CT, blood work, all looked fine physically.

At the time, I didn't know how blessed I was, but after about 4 weeks, the foreign ringing subsided and went about my life. Funny how in the moment it's all doom and gloom and how quickly my mind moved on in the weeks after.

So after a couple of months, I attended a concert (wearing hearing protection!) and noticed about a day after the event the ringing was back. What I did in the days/weeks afterwards was much the same as the first time. I rationalized to myself - "well, if it went away the first time, stay the course, wait it out." Being the worrier that I am I played the "What if" game - did I not protect myself enough? Did I catch a virus? I remember at that time I found this Tinnitus Talk forums and went down the proverbial "rabbit hole" of information - some good and some bad. I realized after a while the negative stories were far outweighing the positive and took a personal ban on reading anything more or "Dr Googling" anything.

Around Spring of 2018 something severely tragic happened in my life, a close family member become ill (physically, mentally) and it took its toll on my entire family. We watched hopelessly as this person degenerated and eventually succumbed to the illness. This was in the fall of 2018. At that point, I think I was managing my tinnitus in the best way possible, ignored it most of the time. Thinking back I don't know what the secret "sauce" was but I definitely was not as obsessed.

After that traumatic event sometime around November I remember being exposed to some loud loud noise at a corporate event without hearing protection. Call it cockiness or stupidity, but within the next few days my tinnitus was more pronounced. Additionally in the weeks after that - I can't remember exactly when, but I was sitting around my home in relative low noise and suddenly everything became LOUDER and my ears started thumping at certain noises - people's voices, silverware, drawers slamming shut. I was in full on panic mode. I turned back to the double edged sword that was the internet and learned more about hyperacusis and a condition called "tonic tensor tympani" that I most likely had.

I knew I needed help - I reached out to an audiologist in my area that knew about these foreign beasts tinnitus, hyperacusis, TTTS. After the standard tests he encouraged me that I didn't have any "major" hearing loss on my audiogram. Although extended high frequency tests were showing some loss on one ear, everything else was in the normal range. He explained that "normal" sounds could NOT hurt me and that I needed to be exposed to these things instead of avoid them and that a lot of my fears and anxiety were part of the mental aspect, not to discount the physical aspect. After talking he encouraged me to start Tinnitus Retraining Therapy. I started with some noise generators that were more "white noise" based but I quickly realized they were making my tinnitus worse. So we changed it up and I was using more of a chime/fractal tone - this is in the Jan-Feb timeframe of 2019.

So here's the weird thing looking back - within at least a couple weeks, even BEFORE my TRT, I think my hyperacusis and TTTS backed off a little bit. Noise wasn't nearly as painful and the "thumping" in my eardrums only happened with Very specific noises against quiet backgrounds. Any type of ambient noise would make the TTTS not react. I was back at restaurants, hanging out with my family again as "normal" as possible. Keeping in mind that sharp noises were always around the house since I had a toddler running around..

I continued with my TRT throughout 2019 and you know what, I KNOW I had some tough days or weeks/spikes. My e-mails to my audiologist venting about those days are evidence all was not EASY. However, on the average I look back and I had a pretty damn good 2019. I went on vacations, acted "normal" as possible and things were good. I know the tinnitus was there and the "TTTS" could be set off but it was almost like I didn't care??? Evenings were always tougher but I'd just think about it for a few hours then go to bed and restart the next day. Again, as is the theme of this message - I didn't know how blessed I was. My periodic visits with my audiologist confirmed at least subjectively I was doing better - not cured by any means but leaps and bounds greater.

That leads me to this past November 2019. As the perpetual worrier and "what if" master, I can't pinpoint what set it off but one of my "spikes" was noticeably worse than before. I was at a louder party with some friends one evening in October - could that have been it? My now pre-school aged child started a screaming phase to get attention and the piercing noise at home that would show up caused a very bad "fight or flight" reflex in me where my skin would crawl when he would scream for attention - was that is? I also got a really bad cold / virus at that time that I’m just starting to get over. Was it that? But if it was that, I’d surely feel better now from a tinnitus perspective?

Was it stress? was it acoustic trauma? I Don't know for sure. I had plenty of "louder" moments in the past year - why now? I'm a very stressed out person as it is, maybe all of this is stress related with the trauma from previous years?

Anyway, from that point on my tinnitus in the right ear has presented itself louder than my old baseline that I came to "Accept" and tolerate. It almost felt like a relapse but this time the H was much stronger and the TTTS threshold for thumping was lower. How could I do this to myself again?

I visited my trusty audiologist and he assumed me it was just a spike and I've dealt with them before and I'll do it again and to stay the course. And on the chance it's a permanent spike I'll learn to deal with that, too.

He recommended I see a cognitive behavioral therapist. He explained TRT isn't just the noise generators, it's counseling and that I recall haven't done the therapy part of it and was showing improvement so he didn't want to fix what wasn't broken. I'm into session #3 of meeting with this therapist, but really don't know what to expect there. So far it's been more or less a "getting to know you" history and some reassurance that I'm not crazy, lol.

I "got through" the holidays as a shell of myself. I went through periods of crying and self loathing that I wasn't anywhere near the "present" and "Best" version of myself I could be. As with the holidays you have many people gathered in one room with a lot of noise - I had to excuse myself from many of these rooms because my ears felt so full and painful at times. How could this be happening to me? I thought I had tinnitus under control to let it slip out of my grasp and now I have to deal with even worse hyperacusis and TTTS?

So now it's going on 2 full months since my setback. The anxiety that I rid myself of last year where I could barely notice my tinnitus is back and I find it difficult to get through some of the days. In some sort of cruel irony, I wish for the days of last year where I had barely noticeable and manageable tinnitus. Why did I take it for granted? Surely 2 months is more than just a spike.

I get into these negative feedback loops of "I can't deal with it like this." "It got worse and will NEVER get better". "What if this is a sign of things to come where it's all downhill from here". "I can't be a good father/husband/son/brother this way and I have many many more years to live". I know these feelings are irrational but they haunt my mind all the same.

I've had some days since my spike that have been not as bad, I think. I can still tolerate going to the store, going to the gym (as its one of my hobbies that makes me feel better), and everyday conversations are still OK To have with coworkers and family. A part of me things, wow it COULD be worse since there are so many souls out there with severely worse tinnitus and hyperacusis.

Aside from trying to re-read some posts like yours that kept me positive in the past I'm trying desperately not to Google tinnitus, hyperacusis and TTTS, but failing hard. The negativity sometimes permeates my brain and I get stuck thinking about all of the horror stories and how that WILL be me.

I start feeling skeptical that my audiologist "knows" anything and maybe all of this TRT was nonsense to begin with and I'd be exactly where I was regardless. I start thinking about maybe needing medications but how do I ask? What if they don't work? what if they make it worse?

Do I reach out to some of these surgeons that operate on the tendons in the ear that could potentially help the TTTS despite the risk?
Again, my brain spirals out of control out of sheer anxiety.

I don't know why I'm writing honestly, maybe for encouragement, maybe to vent. It's been tough living my life one day at a time trying to just "get through the day". I can't remember the last time I truly relaxed.

Thanks Billie for listening...

 

@Michael Leigh -- Any kind of advice/support you could offer?

@Eric D2 - You might find the following thread to be of interest. -- All the Best...

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

 

HI @Lane
I am replying to your alert message.

I have read your post @Eric D2 and see that you have a lot going on. In addition to having anxiety for most of your adult life, it can't be easy having to cope with tinnitus, hyperacusis and TTTS. I think you are doing all that you can, as you are having TRT with counselling now. If you aren't wearing your white noise generators because you find they cause irritation and possibly make the tinnitus and hyperacusis spike. Try wearing them for 1 or 2hrs then take them off for the same duration. Slowly build up the wearing time and hopefully your auditory system will be less sensitive. Keep their volume slightly below the tinnitus and take things slowly.

Give the counselling time to start taking effect. I suggest you try and avoid places where loud music is played for a while, so your ears have a chance to rest. If you are taking medication to help with your anxiety, this may need to be adjusted, as tinnitus, hyperacusis and TTTS can cause additional stress.

Best of luck
Michael

 

Hi @Eric D2 , and welcome to the forum. You'll find a lot of information here, and many many of us who understand exactly what you're going through. I wanted to make sure that @billie48 gets tagged here; otherwise your message may not get seen for a while. When you want to target someone in particular, type the @ symbol and the first few letters of their screen name, and a little box will come up with their name and picture. Click on that to insert the name in your message. When you post your reply, that name will become highlighted in blue, and the person will get an email telling them there's been some activity here and their name was mentioned.

I'm so sorry for what you're experiencing. This story of Billie's has helped countless numbers of us feel a little bit better about the possibilities of a livable future. I stumbled upon this forum when I too was in a place of darkness and despair, and it really helped to connect with people who knew what I was talking about. (Nutshell version of my story: After years of having high pitch T that was not too obtrusive, in 2014 I suddenly started having low frequency noises in my head, plus vibrations, plus hyperacusis. The next year or two were hell, but like Billie I have now adapted and this stuff doesn't scare me any more.)

I wish you the best of luck on your journey.
Della