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

[billie48]

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.

Eric, sorry to hear of your deep suffering from tinnitus, hyperacusis and TTTS. You have my deep empathy. I also like to thank Michael, Lane and Della for helping to give you some sound advice. I am sorry for being late in replying to your message. I am actually on the Harmony of the Seas right now cruising the Caribbean and I have had limited time on internet usage. I am living my life fully and abundantly regardless of stress and tinnitus spikes. Due to some recent stresses unrelated to tinnitus, I do find my tinnitus spiking to a level similar when it first attacked me (which caused nothing but panic attacks and sleeplessness). But instead of caving to the spikes, I say the heck with tinnitus and stress and off we go (with my wife) to our winter hideaway to warm Florida and cruises. My home country Canada is a frozen polarland right now. LOL.

I am positively living my life with T high or low, spiking or baseline. Finding joy amid the pain, living life abundantly to compensate the suffering, and doing nothing for tinnitus are some of the mottoes I follow nowadays. I refuse to supply more fuel for tinnitus to continue its tyranny over my life. It is a choice I have to make patterning after the choice made by Zoe Cartwright (the lady who is totally deaf with unmaskable tinnitus which I posted about in my success story). This takes time and repeated effort. The body will take some time before it will follow our choice to do nothing for tinnitus, as repeated spikes and setbacks can happen along the way. Don't fear spikes and setbacks. They are going to happen along the way to final recovery or habituation.

I hope your hyperacusis will fade overtime. Those hyperacusis from acoustic trauma usually will fade with time and your upmost patience is needed. You can also post for some advice from the hyperacusis support forum. I recommend you consider buying some good quality 'musician ear-plugs' so they can help shield some of the sudden loud noises around you. As for TTTS, you can search this forum or google for treatment option for it. It is a fixable condition. I think right now your challenge is the high stress and anxiety you are having and unfortunately they are bad for tinnitus. Besides seeking some treatment options or taking medications (like I did), we can help ourselves to do our best to reduce the stress level of our body. I am doing it with deep breathing, exercise, hobbies, travel etc. Every one can find what can help to relax them. All the best to you, Eric. Don't despair. Believe that good days will come back to you. Take it one day at a time and don't project the future at the worst time. Take good care. God bless your recovery.

 

[jimH]

This story of Billie's has helped countless numbers of us feel a little bit better about the possibilities of a livable future.

I couldn't agree more. @billie48's story has helped and encouraged so many of us! He's been a real blessing to the forum, for sure.

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

Same here. It's seems we both (like many others) found it when we needed it most. I no longer felt so isolated and alone in living with and suffering from severe Tinnitus and Hyperacusis.

 

[billie48]

Eric, sorry to hear of your deep suffering from tinnitus, hyperacusis and TTTS. You have my deep empathy. I also like to thank Michael, Lane and Della for helping to give you some sound advice. I am sorry for being late in replying to your message. I am actually on the Harmony of the Seas right now cruising the Caribbean and I have had limited time on internet usage. I am living my life fully and abundantly regardless of stress and tinnitus spikes. Due to some recent stresses unrelated to tinnitus, I do find my tinnitus spiking to a level similar when it first attacked me (which caused nothing but panic attacks and sleeplessness). But instead of caving to the spikes, I say the heck with tinnitus and stress and off we go (with my wife) to our winter hideaway to warm Florida and cruises. My home country Canada is a frozen polarland right now. LOL.

I am positively living my life with T high or low, spiking or baseline. Finding joy amid the pain, living life abundantly to compensate the suffering, and doing nothing for tinnitus are some of the mottoes I follow nowadays. I refuse to supply more fuel for tinnitus to continue its tyranny over my life. It is a choice I have to make patterning after the choice made by Zoe Cartwright (the lady who is totally deaf with unmaskable tinnitus which I posted about in my success story). This takes time and repeated effort. The body will take some time before it will follow our choice to do nothing for tinnitus, as repeated spikes and setbacks can happen along the way. Don't fear spikes and setbacks. They are going to happen along the way to final recovery or habituation.

I hope your hyperacusis will fade overtime. Those hyperacusis from acoustic trauma usually will fade with time and your upmost patience is needed. You can also post for some advice from the hyperacusis support forum. I recommend you consider buying some good quality 'musician ear-plugs' so they can help shield some of the sudden loud noises around you. As for TTTS, you can search this forum or google for treatment option for it. It is a fixable condition. I think right now your challenge is the high stress and anxiety you are having and unfortunately they are bad for tinnitus. Besides seeking some treatment options or taking medications (like I did), we can help ourselves to do our best to reduce the stress level of our body. I am doing it with deep breathing, exercise, hobbies, travel etc. Every one can find what can help to relax them. All the best to you, Eric. Don't despair. Believe that good days will come back to you. Take it one day at a time and don't project the future at the worst time. Take good care. God bless your recovery.

It has been a while I posted this reply to @Eric D2. I hope you are doing better. Any update if you are still actively visiting the forum?

 

[n_li808]

Hey @billie48 I just read your success story. I hope one day I'll be able to overcome this as well!

Did you protect your ears with earplus or anything? What about now?

I want to live my life but needing to be aware my surroundings is dragging me down...

 

[billie48]

Hey @billie48 I just read your success story. I hope one day I'll be able to overcome this as well!

Did you protect your ears with earplus or anything? What about now?

I want to live my life but needing to be aware my surroundings is dragging me down...

Sorry i missed your message. Hope you are doing fine now. Yes during the height of my hyperacusis I used to wear earplugs. I actually own $200 worth of all forms of protection. Lol. But some veteran forum members advised me not to overprotect as I could develop sound sensitivity. So I only did it going out to loud venues. Now I don't need any. Just use my fingers if needed.

 

[billie48]

For those of you who read my latest posts in December 2020, you would have realized I suffered sudden sensorineural hearing loss or SSHL on December 10, 2020. Overnight and without warning my left ear which used to be the better ear had suddenly become profoundly deaf overnight. SSHL is a serious medical emergency that can happen at random and without obvious reason. It happens to about 5000 people a year in USA but I expect the real number can be much higher.

What happened? I couldn't hear any verbal conversation at all from that ear. Besides that, I suffered violent vertigo where every little head, eye, or body movement would turn everything spinning madly. That of course caused bad vomitting that even water wasn't allowed into the stomach. A new roaring, rumbling and humming tinnitus emerged from the left ear, which adds on top of the ultra high pitched tinnitus I used to have. So now I have a duet of a bass and a tenor singing inside everyday. Lol. Then there are the other nasty symptoms of SSHL, including dizziness, loss of balance (due to the eyes which used to depend on both ears for positional and posture input now can only get it from one ear), ear fullness, both ears feeling pressured and plugged as if the ear drums are shut tight, sound sensitivity or hyperacusis, brain fog, constant headaches and general mental tiredness (due to the neurons working overtime to try to adjust to the new normal of depending only on one ear to determine where the sounds are coming from). So it is a slow process of healing, not necessarily the hearing loss which may be lost for good on the deaf ear, but also all the nasty symptoms. Generally it was stated in SSHL support forums that this may take just as much time as an intrusive tinnitus to heal and improve, any time from 6 months or more to see better improvement on the symptoms even if no improvement on hearing.

So this is again a chance for me to practice all the helpful strategies I listed above. I must say I have done quite well, as so far I have not caved into any negative and emotional reactions. I keep believing positively that over time sticking to my strategies, normal and good life will be back again even if I may have to use hearing aids to help out the deaf ear, or worst come to worst, go through a cochlear implant procedure to supplement the hearing of the deaf left ear. Life isn't always going to be perfect and sometimes curve balls of life will be thrown at us from nowhere and we just have to learn to try to accept, adjust, and adapt to the new normal (the AAA approach), and hopefully the body will get used to the new normal in due time, or better yet that those nasty symptoms will fade over time. There is nothing to lose to keep a positive mental frame of mind. Going the other way will only hurt and make life miserable. So I stay positive. I begin to reclaim most of the things I like to do, gardening, singing, dancing with my wife, even going fishing for the mighty salmon and steelhead even if it means I wobble when I walk and may have to use a walking stick to help balance myself. I am not going to let the tinnitus and now SSHL tyranny to dominate my life and I will practice my stated motto of "Finding Joy Amid the Pain", and "Living Life Abundantly Regardless" of tinnitus and now SSHL too. Not saying it is going to be easy. But by sticking to these positivity strategies, I believe time is on my side of winning over these obstacles.

For those of you who would like to know more about the detail and standard treatment protocols I went through for SSHL, please check out the following thread which I created asking for support as soon as my SSHL started. Many kind members contributed helpful ideas and expressed their concern for me. I thank them very much for their kindness and help. So check this out if you have SSHL and not knowing what to do or what to expect. God bless.

My Turn for Your Support — Woke Up with Sudden Hearing Loss and Severe Vertigo

 

[Michael Leigh]

There is nothing to lose to keep a positive mental frame of mind. Going the other way will only hurt and make life miserable. So I stay positive. I begin to reclaim most of the things I like to do, gardening, singing, dancing with my wife, even going fishing for the mighty salmon and steelhead even if it means I wobble when I walk and may have to use a walking stick to help balance myself. I am not going to let the tinnitus and now SSHL tyranny to dominate my life and I will practice my stated motto of "Finding Joy Amid the Pain", and "Living Life Abundantly Regardless" of tinnitus and now SSHL too. Not saying it is going to be easy. But by sticking to these positivity strategies, I believe time is on my side of winning over these obstacles.

You have certainly been through the mill Billie and I'm pleased to know you are making steady recovery. If I may say so you are quite correct, positivity is the way forward and for some, it can be especially difficult but with time and patience a lot can be achieved.

Well done.
Michael

 

[glynis]

Hi @billie48, I have been catching up with posts on the forum and sorry to hear about your single sided hearing loss.

I totally know what you're going through as I have Meniere's Disease in both ears .

Balance was a big problem for me and still is for a lot of situations.
In the dark I'm all over the place, no balance up ladders or high places and walking in the day was hard going like being drunk, bouncy vision and off balance standing in a queue.

Over time your eyes will adjust and take over from your ears relying on your balance when walking but like myself will struggle in some situations and your tinnitus could remain at a high level.

You might benefit from a hearing device a bit like a mini head set that transfers sound from your sudden sensorineural hearing loss ear over to the other ear so it can help you with being in places and around traffic.

Getting used to crossing roads can be hard and must constantly use your eyes and extra checks before crossing.

Brain fog is still problematic for me.

I have more hearing loss and severe bilateral tinnitus and have some up to date brilliant hearing aids and built in masker playing the sound of the sea.

My Meniere's attacks have returned with full on symptoms and know my hearing will get worse, even go deaf, so if you need any support with what you're going through. You can pm me anytime.

Things will start to feel better as you adapt but it's getting to the place you can manage better.

Lots of love and hugs coming your way,
Love,
Glynis

P.S. Look into Gaze Stabilization Exercises.

 

[glynis]

@billie48, sorry to hear you're not doing too good with your ears, I left a message for you above xxx

 

[billie48]

Hi @glynis,

Thanks for your concern. I am slowly improving although I don't know how much hearing I will regain in the left ear. Right now I am having sound sensitivity or hyperacusis issue. It will be a slow process to get out of hyperacusis. The ears feel plugged and pressured and so the humming loud tinnitus from the left ear gets amplified from the bottled up feeling. But I am going fishing tomorrow regardless of what the ears want to do. Just may have to walk with wobbled steps. Lol.

Thanks for your kind regards. I hope all is well with you.
Billie

 

[Alex1515]

Thank you so much @billie48 for this amazing story of hope and light for the many of us that are suffering with the onset of tinnitus.

I wanted to ask you for how long did you take Prozac? I am taking antidepressants because I too felt suicidal. I am coping better now and I think the tinnitus has decreased in volume.

 

[billie48]

I wanted to ask you for how long did you take Prozac? I am taking antidepressants because I too felt suicidal. I am coping better now and I think the tinnitus has decreased in volume.

Thank you for the kind words. I only took Prozac at the time tinnitus first hit me over a decade ago. This time with SSHL I am drug free as I am coping well with the helpful strategies I mentioned in my success stories.

Memory is a bit vague about the taking of Prozac long ago. I took Prozac which my doctor said would help me battle the panic attacks better after I phased out the benzo Ativan. He said SSRI AD like Prozac isn't addictive like benzo and that I could take it long termed if I like. But I didn't want to depend on drugs if I don't have to. So after the symptoms of panic attacks were in better control, I began to phase out of Prozac too. I would think it must be about 9 months to a year I took Prozac. I didn't have any bad side effect from withdrawal of it. Lucky me.

 

[Alex1515]

Thank you @billie48 for your reply.

I also wanted to ask you what was the cause of your tinnitus?

 

[billie48]

I also wanted to ask you what was the cause of your tinnitus?

I couldn't say for sure what caused my tinnitus. It could be stress at the time, or barotrauma (because I took a flight a week before), or acoustic trauma (I tried to fix a faulty smoke alarm without earplugs a few weeks before), or that I had hearing loss due to aging. I didn't have bad hyperacusis after the onset of the tinnitus, which leads me to think acoustic trauma by the smoke alarm was the culprit.

 

[lis]

Billie, do you still have the cotton balls ear fullness? How do you not feel terrified at the shocking physical loss? I'm still struggling with the abnormal hearing. I couldn't hear a thief come up behind me, which scares me.

 

[billie48]

Billie, do you still have the cotton balls ear fullness? How do you not feel terrified at the shocking physical loss? I'm still struggling with the abnormal hearing. I couldn't hear a thief come up behind me, which scares me.

Yes Lis, I still have the cotton balls ear fullness, and strong pressured and plugged sensation plus severe hyperacusis right now plus a new loud humming tinnitus from my left ear.

I am 3 months into SSHL. According to some folks who have had SSHL before, their advice is to keep calm and positive as improvements will come if slowly, between 6 months to 3 years which is similar to sufferers of intrusive tinnitus.

How do I remain as calm and positive as I do now? I guess because I had suffered too much over a decade ago when my tinnitus first hit me which was followed soon after by severe hyperacusis. I suffered like hell worrying about the future and refusing to accept the reality. Such resistance created so much mental and physical sufferings that I now consider could have been spared had I known I could still live a normal life even with tinnitus. Hyperacusis also faded within a year.

So this is 2nd time around with hyperacusis and hopefully if I stick to my success strategies I will minimize the damage and the sufferings even if my left ear is gone for good. There are always the hearing aids. BAHA and cochlear implant that may help improve things.

I will wait to see how my ears and my body can heal themselves first while I am figuring what my next step is.

 

[Johan001]

@billie48, I really admire your strength and inspiration. Just wanted to say thank you for your story and motivation. I remember reading it over and over in July when I was in the middle of the tinnitus "soul grinder".

I am certain you will improve. Wish you a speedy recovery!

 

[billie48]

@billie48, I really admire your strength and inspiration. Just wanted to say thank you for your story and motivation. I remember reading it over and over in July when I was in the middle of the tinnitus "soul grinder".

I am certain you will improve. Wish you a speedy recovery!

Thank you for the kind words. Glad that my story has helped you through the tough initial months. Wish your recovery will continue. Take care. God bless.

 

[Ben Winders]

@billie48, your success post is a true inspiration. I'm a year in and slowly getting to a better place.

I have low buzzing tinnitus in my right ear, but (so far) I only have it when I don't sound-enrich my bad ear during the night. The buzzing also comes on after driving a car for 2 minutes. After 2 minutes it starts stuttering and then stop completely, like: brrrrr... brrr... brr... br... b... STOP... It really sounds like I describe it, like a machine running out of gas... Very strange for being regular tinnitus.

I have 2 questions if you don't mind:

1) I still have a someone full feeling in my bad ear, will that ever go away?

2) Do you use hearing protection while driving a car? I sometimes drive for 8 hours per day, which seems like a long time with high volume sound, even if it never goes above 80 dB.

 

[billie48]

1) I still have a someone full feeling in my bad ear, will that ever go away?

I think the ears tend to heal overtime and so it is highly possible that the fullness will go away. You may want to see an ENT to check the ears.

2) Do you use hearing protection while driving a car?

I didn't need hearing protection when my hyperacusis faded. But right now with my SSHL, my hyperacusis is back and quite severe. So I use earplugs on and off while driving. If on freeway or very rough road surface I wear earplugs. Need to be prudent on this. Each person may have different tolerance on road noise.

 

[ThomasC]

Hi Billie. How are you doing? Have you recovered from sudden sensorineural hearing loss?

 

[billie48]

An update on my SSHL. The deaf left ear hasn't restored hearing. So I am partially deaf. But life goes with me. I am fishing and gardening, and having virtual meetings with families and friends. A cruise is planned for next January. The heck with tinnitus, hyperacusis, and SSHL. Hope all is well with you all. Stay safe from COVID-19. Take good care. God bless.

 

[David S]

@billie48, I just read some of your latest updates. You are truly a never ending source of inspiration on how to live life fully with ears that messes with you constantly.

Thanks,
David

 

[Athens]

During your road to recovery, did you find that exposure to normal, everyday sounds worsened your conditions?

 

[Della]

Hello all, and especially @billie48! I haven't kept up with the posts here this year, so I missed the new curve ball life threw you. I'm so very sorry, but equally glad to hear that you've been keeping to your regimen and staying positive. Going ahead with (or returning to) as many of life's joys as we can is the only way forward.

Hi @Athens... I can't tell if you meant your question specifically for Billie or if you're asking anyone in general. For myself, the answer is certainly yes. You have to remember that "normal everyday sounds" vary hugely in their decibel level. Before we get tinnitus, we don't tend to think about how loud a busy city street is, for example. I'm way more sensitive to sounds than I was before, and many things I used to pay no attention to are painful. And yes, exposure to them can worsen my symptoms... but I never know when that might happen. I have hearing aids and 4 different levels of ear plugs that I carry with me all the time, so I'm ready for whatever. Now at 7 years in, my tinnitus and hyperacusis still tend to go through cycles. Sometimes I can pinpoint something that causes a spike, but often it just seems to get worse or better on its own. (For me, "better" means I have only a continuous high pitch sound; "worse" is when low rumbling sounds and/or low humming kick in, and/or hyperacusis.)

Just by way of update on me, I would say that I'm fully habituated at this point. Last night I went to the first concert I've been to in 2 years, the fantastic jazz trumpet player Chris Botti and his band, and it was both surreal and wonderful. I went prepared for anything, with all my tools, since I knew the musicians would be amplified. It was a tricky concert because the volume level went from extremely soft to pretty loud, sometimes in the same song. What I wound up doing was wearing moderate level earplugs in both ears, but taking out the left one and turning that ear a bit more toward the stage when things got really soft. Likewise I could turn my head in the other direction quickly when I needed to, to take care of sudden loud passages, and if things stayed loud for a while then the left earplug got popped securely back in. It worked pretty well I thought, but when I got home in the quiet house I realized I had added a deep throbbing sound that hasn't been there for a long time. I figure it was a reaction... but maybe more a reaction to what came before the concert: having dinner outside in front of a cafe, with motorcycles going by and young guys revving their car engines, etc. I didn't wear my earplugs during dinner because I wanted to talk with my friend and hear what she was saying. (Not that we could hear anything when the guys were playing Grand Prix, lol.)

My standard practice to calm things down when they flare up is to wear my hearing aids all day every day for a while, and at night to listen to the Tibetan Temple Bells on the website myNoise.net. For some reason these two things are reliable helpers to get me back to my "normal".

Best wishes to all of you as our journeys continue! Keep safe and well.

Della

 

[billie48]

Hello all, and especially @billie48! I haven't kept up with the posts here this year, so I missed the new curve ball life threw you. I'm so very sorry, but equally glad to hear that you've been keeping to your regimen and staying positive. Going ahead with (or returning to) as many of life's joys as we can is the only way forward.

Thank you Della for your kind thought. Yes life does throw us unexpected curve balls at times. We can't worry about things we can't control. I have learned my lessons so I will do the best with what I can still control, and that is to be more patient and positive with my body and my life. Finding joy amidst the pain and living life abundantly to compensate from the suffering, that is my new motto in life.

 

[GeorgeLG]

@billie48, thank you for your excellent initial post, I have come to agree with your conclusions. I believe that with most challenges, especially chronic pain, the total outcome for us is a combination of the initial symptoms plus how we react to it. In certain conditions like chronic pain, tinnitus and hyperacusis, our emotional brain centers/chemistry exist in a feedback loop with the symptoms which can calm the problem down or make it run away. In fact with guys like you and me that have suffered extreme loss and grief that may be the starting point for the cycle. We have a lot of impact on the total effect on our life.

All the best,
George

 

[billie48]

During your road to recovery, did you find that exposure to normal, everyday sounds worsened your conditions?

Sorry I missed your post and question. I initially thought the exposure to normal sounds was bad for my hyperacusis. It seemed like that as they all appeared so loud and unbearable. But I found out myself and from others that hyperacusis will usually fade out if the tinnitus is from acoustic trauma and that allowing exposure to normal sounds will be beneficial to help speed up recovery from hyperacusis. And so it is. Both of my hyperacusis episodes ended within a year with this approach.

 

[Athens]

Sorry I missed your post and question. I initially thought the exposure to normal sounds was bad for my hyperacusis. It seemed like that as they all appeared so loud and unbearable. But I found out myself and from others that hyperacusis will usually fade out if the tinnitus is from acoustic trauma and that allowing exposure to normal sounds will be beneficial to help speed up recovery from hyperacusis. And so it is. Both of my hyperacusis episodes ended within a year with this approach.

I have had hyperacusis for fifteen (15) months and tinnitus for almost as long. I have not overprotected and have exposed myself to normal, everyday sounds. The hyperacusis and tinnitus have not improved and the tinnitus seems like it might even be worsening. I am wearing above the ear sound generators and listening to pink noise each day. It might be aggravating my condition but my tinnitus seems reactive to running water, paper/plastic bags, turning the key in a lock, squeaky floors, etc. I am also still having a lot of insomnia which has been a problem since July of 2020.

 

[DebInAustralia]

Eric, sorry to hear of your deep suffering from tinnitus, hyperacusis and TTTS. You have my deep empathy. I also like to thank Michael, Lane and Della for helping to give you some sound advice. I am sorry for being late in replying to your message. I am actually on the Harmony of the Seas right now cruising the Caribbean and I have had limited time on internet usage. I am living my life fully and abundantly regardless of stress and tinnitus spikes. Due to some recent stresses unrelated to tinnitus, I do find my tinnitus spiking to a level similar when it first attacked me (which caused nothing but panic attacks and sleeplessness). But instead of caving to the spikes, I say the heck with tinnitus and stress and off we go (with my wife) to our winter hideaway to warm Florida and cruises. My home country Canada is a frozen polarland right now. LOL.

I am positively living my life with T high or low, spiking or baseline. Finding joy amid the pain, living life abundantly to compensate the suffering, and doing nothing for tinnitus are some of the mottoes I follow nowadays. I refuse to supply more fuel for tinnitus to continue its tyranny over my life. It is a choice I have to make patterning after the choice made by Zoe Cartwright (the lady who is totally deaf with unmaskable tinnitus which I posted about in my success story). This takes time and repeated effort. The body will take some time before it will follow our choice to do nothing for tinnitus, as repeated spikes and setbacks can happen along the way. Don't fear spikes and setbacks. They are going to happen along the way to final recovery or habituation.

I hope your hyperacusis will fade overtime. Those hyperacusis from acoustic trauma usually will fade with time and your upmost patience is needed. You can also post for some advice from the hyperacusis support forum. I recommend you consider buying some good quality 'musician ear-plugs' so they can help shield some of the sudden loud noises around you. As for TTTS, you can search this forum or google for treatment option for it. It is a fixable condition. I think right now your challenge is the high stress and anxiety you are having and unfortunately they are bad for tinnitus. Besides seeking some treatment options or taking medications (like I did), we can help ourselves to do our best to reduce the stress level of our body. I am doing it with deep breathing, exercise, hobbies, travel etc. Every one can find what can help to relax them. All the best to you, Eric. Don't despair. Believe that good days will come back to you. Take it one day at a time and don't project the future at the worst time. Take good care. God bless your recovery.

Hey Billie,

Whatever became of Zoe Cartwright? I've tried finding her since making her short movie, but she seems to have disappeared?