Screaming Tinnitus Disappeared Completely After 2 Years

So, back in February of 2017 I got screaming tinnitus from acoustic trauma during a loud jam session at my own birthday party. And I mean it was screaming... nothing could mask it. I heard it in the shower, at the beach, over the loud blues band that I continued to play with (I was wearing ear plugs)... but basically I could hear it everywhere. In addition, I also had really intense hyperacusis and this combo was just brutal. I went through the tinnitus spiral that everyone who has it bad knows about. The anxiety and panic attacks. I remember stopping on the way home from work almost everyday so that I could cry for a half hour before I got home. I also remember the sort of dark thoughts that come with the feeling of being utterly trapped in a torture chamber for months on end with no hope of survival and only the prospect of endless amounts of brutal pain ahead. Yet, somehow despite this, I was able to keep my life together. I kept going to work and even did a pretty good job. I kept gigging with my blues band. In fact, hardly anyone other than perhaps my wife and brother even knew I was struggling because I did such a good job of hiding it.

Well, about 6 months after the onset, my wife and I decided to take a trip to Catalina Island. I didn't really feel like going but she insisted so I obliged. It was an amazing trip. Although my ears were still ringing very loudly, I must have started to habituate to at that point it because I finally experienced some peace from being in such a relaxing and beautiful place next to the healing sound of water. We spent a week there, camping, hiking and snorkeling and I knew as I waited for the boat to take us home that everything was going to be OK... Well, I was in for a surprise. We disembarked in Long Beach an hour later and I immediately knew something was not right. I felt as if I was still on the boat. I was rocking back and forth uncontrollably. It was disconcerting but I figured that a good nights sleep would reset my balance. Well, it didn't... I woke up the next morning rocking harder than the night before. In fact I felt sea sick for weeks and I also felt extremely disoriented and confused. I just couldn't think straight and had severe brain fog. This continued for the next few weeks and finally, as I found myself struggling at my job and life in general, I booked an appointment with an ENT. He was a very smart guy and he was able to diagnose the problem as a very rare neurological condition known as Mal De Debarquement Syndrome. This condition is similar to Multiple Sclerosis and Parkinson's in its ability to utterly disable its victims. So, at that point, I still had very loud tinnitus but in addition to this I couldn't stand up straight or think clearly. I realized one day that I was pretty severely disabled and that I was spending all of my energy trying to get my life as I had known it back. Then something interesting happened. I gave up trying to be normal. I somehow accepted that my former life as I had known it was over and I needed to carry on with whatever I had left. This was a hard pill to swallow but I was just tired of fighting it.

Over the next few months I noticed my ears ringing less and less and I honestly can't say if it was the continued habituation process or if they were actually improving at that point. I think my focus was on trying to deal with the balance issues and brain fog from the Mal De Debarquement. Around the time of my next birthday (one year after the tinnitus onset), my brother (an MD) discovered an experimental therapy for the Mal De Debarquement syndrome. We tried it and miraculously it was successful! I couldn't believe it, my brain was suddenly clear as bell again and my balance was back to normal. My ears were still ringing but they seemed much quieter and mild. In fact, I was pretty much totally habituated by this point and rarely thought about them. When I did, happen to notice them, they didn't bother me anymore. Slowly, my old life started to re-emerge. I soon forgot about the intense struggles that I had had with tinnitus and started to look at it as my old friend who was always there to keep me company.

Fast forward another year (2019) and everything was going great. My wife and I decided to take a trip to Costa Rica. Well, something truly amazing happened down there. I discovered cicadas! I had never heard these little bugs before but they actually sounded a lot like my tinnitus except that they were incredibly LOUD, so much so that I pretty much had to keep my ear plugs in at all times when we were around them. We spent 3 days hiking in Corcovado listening to these little guys in addition to the howler monkeys and the other amazing sounds of that park. Well, when we finally got back to civilization and I found myself alone in the bathroom of our hotel, I realized something was different but I couldn't put my finger on what it was right away. Then it dawned on me, my ears had stopped ringing. I couldn't believe it at first. I plugged my ears and tried my best to listen for it but it was absolutely silent not even a hiss...nothing! By this point, I was so used to my ears ringing, that the magnitude of this event was lost on me. I simply walked out of the bathroom and casually mentioned to my wife, "Hey, my ears finally stopped ringing." She replied, "Oh that's nice" and that was basically it. The horror story was over... or so I thought! I didn't think about my ears again until June 28th of 2021 when I suffered another acoustic trauma...

Seeing as this is a success story thread, and I find myself struggling once again, I feel compelled to continue with my current story in a different thread. I hope one day soon to be writing another success story though. I know how much we all need hope that we can heal and recover and resume a normal life. So I share this story as much to remind myself as I do to give those of you reading this hope that it is possible to tame and even conquer this brutal beast.

I would like to end this post by sharing the phrase that helped me survive this period. This was something that my childhood friend's father (a well respected cardiovascular surgeon who also had tinnitus) said to my at my lowest point in 2017.

"Just keep putting one foot in front of the next."

I adopted this phrase as my mantra and I think that I am still here today because at my weakest moments when I couldn't imagine going on, I did exactly what he said to do and focused all of my effort on taking my next step. As I said before I hope this helps you as much I hope it helps me once again as I embark on this journey all over again...

 

An amazing well written story

Sorry about the new trauma though. What happened?

I’m a little curious what kind of job you got. Is it an office job?

Some people probably also wonder what the experimental therapy was?

Hope you get lucky again my friend! If not then another trip to Costa Rica might be due

 

Thank you for sharing this! I really hope I recover faster than 2 years though! I hope this new onset isn’t as bad as the first?

 

@]Barry098, what did the therapy include exactly? Could you please share?

 

@KBombRN, when I have a bit more time I will continue the story.

@Exit, I'm glad you enjoyed the read... I will continue with my saga when time permits.

@Freerunner, the therapy was actually a very simple neural re-alignment process. s it turns out, what causes the Mal De Debarquement seems to be a mismatch between the Vestibular and Ocular systems. It is a truly bizarre thing but I think that what happened was that the cocktails that my wife and I had on the beach prior to leaving Catalina put my brain in an unstable state and then the unusual sensory information from the boat-ride locked it in as the new norm. Probably not unlike how tinnitus occurs. The professional therapy involved sitting in a room that slowly spins around you with some kind of pattern that forces a nystagmus reflex from the eyes. Here is a link to the article which inspired us to try it:

New Treatment Successful for Rare and Disabling Movement Disorder, the Mal de Debarquement Syndrome (MdDS)

We actually improvised a bit since we didn't have a spinning room, my brother just turned me around in an office chair as I focused on the paintings on the walls. It took a few sessions but, each time we did it I noticed improvement. After about two weeks it was completely gone. I still can't believe it worked... but it did. I will never get on a boat again though

Imagine if there was a simple solution to tinnitus... wouldn't that be nice?!

 

@Barry098 thank you for sharing your story. This is something I really needed after the days I've had. This has made me hopeful, and I will be sure to keep placing one foot in front of the next. Sounds to me we all need a trip to Costa Rica!

 

Costa Rica is nice... I certainly hope to visit again.

 

@Exit, so, to answer your question about what happened recently.

Well... that is a bit of a saga as well. Like everyone else on the planet, COVID-19 created new challenges and stresses for me. Work (I'm a music teacher) moved online and that was hard. But, I worked hard and adapted. I was looking forward to this summer so that I could decompress from a hard year but, right when the summer started, my elderly mother started to have some mental health issues. She, ended up in the ER twice in two weeks. Then my nephew was (as it fortunately turned out) misdiagnosed with a lymphoma. To get my mind off of all of these stressors, I had some drinks and played some music with some friends (first time since COVID-19).

After 4 years of religiously protecting my hearing with custom molded earplugs every time I played music, I somehow forgot to wear my earplugs. I still don't know how I could have done something so stupid but, my mind was somewhere else. Well...I woke up in the middle of the night with my ears screaming again. I knew instantly that I was in trouble. After about a week I recognized that the anxiety was back. I didn't feel like I had the strength to deal with it head on so I started taking Zoloft. That was my first experience with this drug and so I didn't know what to expect. The higher the dosage I took, the louder my ears rang and I started having issues with staying asleep at night. I had been a great sleeper leading up to this event.

However, I did feel like the meds were giving me a bit of relief so I kept them up for about 3 weeks. Finally, couldn't handle the not sleeping so I quit them and instantly started sleeping well again. My ears also quieted down to the point that I couldn't hear them ringing outside at all. We took a trip to the beach again and everything started to feel normal again. I was still frustrated that they were ringing at all but realistically, on a scale of 1-10 they were probably at a 1-2 by mid-August.

Then my real trouble started. I took a trip to visit a friend of mine near Seattle mid August, right before school was about to start and I told him, no boats and no music. Well, it was a fun and relaxing trip until the last night when his brother came over with his guitar and amp and wanted to jam with me. I knew I should have declined, but it seemed impolite and besides I had my ear plugs to protect me so what was there to worry about right? Well, I don't know how loud that amp must have been but I woke up again in the middle of the night with my ears screaming again. This time, I fought back the feelings of panic as I contemplated yet again having to go down this road. The next day I woke up and they were ringing nauseously loud. Then I had to take a long flight to get back home. By the time I got home, my ears were absolutely screaming... it was 2017 level for me all over again. I tried to stay calm the next week but the anxiety got the better of me and after feeling panicky all week, I made the bad decision to give Zoloft another try. I knew sleeping would be a challenge at least initially but I thought that perhaps I didn't give it long enough for my body to adjust the first time around I also didn't feel like I had any other options so I took the plunge.

Bad move! Zoloft makes you feel a whole lot more anxious before you start to feel better. The anxiety I felt was utterly soul crushing. It also made my ears ring noticeably louder and on top of all of this I couldn't sleep! I tried everything I could get my hands on to help me sleep: Melatonin, Valerian, Trazodone, Benadryl, Nortriptyline, Xanax. None of it helped me get more than about an hour or 2 in a row. I was so determined to make this work that I stayed on the Zoloft for 9 weeks. After 6 brutal weeks I finally started to feel a little less anxious but the insomnia never went away and I started getting some stomach pain which I attributed to the cocktail of meds that I was taking to help me sleep. So, I quit the sleep meds entirely and started tapering off the Zoloft about 2 weeks ago and my sleeping has been improving every night.

Yesterday I went off of the Zoloft entirely and I pretty much slept the whole night without taking any medications. That feels like a victory for me but my ears are still ringing really loud probably somewhere in the 8-9/10 range. This time around the sound is also very different from 4 1/2 years ago. I have a high pitched ringing mixed with some speaker hiss type sound but I have something entirely new. It sounds kind of like being stuck in a car in the middle of a sandstorm. Fortunately the sandstorm doesn't rage all day. It always seems to start up in the mid afternoon and then get louder as the evening progresses. It sounds like every frequency all at once and it is very opaque. I didn't have that sound before starting the meds so I don't know if it is related in someway to that or if it was from the finally acoustic insult that I received in Washington.

Anyway, that is where I am at the moment. It has been a rough turn of events for me but, there is only one way out of this mess and it is about putting as much time between myself and the last injury that I had. I know that with time (and sleep!) the brain can heal itself. I didn't ever want to have to deal with this again, but we have to play the cards the we are dealt. Needless to say, I think my days of loud music are over. I have decided to go back to acoustic instruments once and for all. In the meantime, I am practicing my old mantra of "putting one foot in front of the next."

Like I said in my original post, I hope to conclude this journey as another success story like my 2017 victory but I also know that the first step will be working towards habituation and the next few months will be challenging.

 

Wos that was long! Thank goodness I have nothing better to do

Music teacher...?! That’s insane what instruments do you teach? One on one or a classroom of little gremlins with their lethal instruments?

I agree the only thing you can do now is to give it time. Be careful, you might want to think about something better than earplugs when you fear loud events. Cheap earmuffs can be more comfortable than proper 3M earmuffs. And you won’t feel so claustrophobic as in 3M types.

Regarding the constant tinnitus changes and medications, it could be a coincidence, my experience is that in the first 5 months there’s a lot of changes and sometimes to the worse without any medication or anything loud happening.

But I might be a special case.

 

Sorry for the novel. My psychologist told me that I need to journal, so I am practicing.

That’s interesting that you experienced many changes in the early stages too. I remember that from my first time as well. Maybe you are right about the spikes and the medication being coincidental.

 

Thank you for your lovely success story, although I am very sorry that you are struggling again. I have a similar story. I too suffered an acoustic trauma after a loud AC/DC concert in 2015. At the time I had no measurable hearing loss but I had bilateral tinnitus. It was awful. I don’t even know if it was super loud I just know that I was super anxious in my response to it and was out of my mind. At the time they put me on Zoloft and I have to say I ended up feeling much better. However, I also had a very hard time coming off of the Zoloft and I gained like 60 lbs while in it. But I digress.

Long story short, my ears healed and within about 2.5 years I no longer had tinnitus.

I was tinnitus free for almost 3 years. In April of 2020, I developed unilateral tinnitus and unilateral mild hearing loss. Within a year however the tinnitus resolved. I still have some bilateral tinnitus that started in May of last year that the ENT thinks is related to TMJ and allergies. And man can it get loud. It fluctuates and can also go away or be imperceptible. I have it in both ears but worse in my right. It went away late fall of last year and didn’t return until March, which is why they think there’s an allergy component.

Anyway, my next hurdle will be the Pfizer vaccine and praying that it has no impact on my tinnitus. If I don’t get fully vaccinated I will be fired from my job. Even though I don’t interact with people routinely. Yup fired. I babe 2 kids, one of whom is going to college in 2 years and a boat load of bills. Can’t lose the job.

Best of luck to you and hope this recurrence settles or better yet, resolves. We are both proof that it can happen.

 

I’m so happy to hear about someone who beat it twice! It’s crazy how complacent I got after the first resolution... I will never make that mistake again! I wish you luck with the vaccine. If it’s any help, I didn’t have any issues with it other than a sore arm for a few days. I understand that it is a bit of a gamble though.

Thanks for sharing your success story. Positivity is the key to dealing with this.

 

Which vaccine did you get if you don’t mind me asking?

 

Moderna

 

Thank you for this Excellent Post! And best of luck towards habituation or even complete resolution this 2nd time around! Tinnitus is such an up/down journey and these success stories really help me get through difficult spikes and times dealing with this horror show.

 

Just wanted to give a status update. My tinnitus is definitely less bothersome than it was a few months back. Not resolved but significantly less intrusive. Not sure if it is actually quieter but I’m not noticing it all day long anymore. I’m also finally sleeping much better after discontinuing ALL of medications I was trying.

So, both times I’ve gotten tinnitus it followed the same trajectory. Six months of pure hell followed by a transitional period where I was able to tune it out for extended periods. I can only hope this case of tinnitus will eventually fade and disappear into the ether like the last time!

 

Really inspiring to hear this. I have been suffering for 17 months now and I really hope it goes away for me by 2 year mark. It's been hell. Some days are harder than others and I pray it just lessens by 50%. Happy for you love life to the fullest and smile all the time. Take care.

 

Tinnitus, for me, started March 2020 at the start of the pandemic. Mine sounded like bubble wrap being stepped on or a crack of a whip.

I started on an antidepressant (Lexapro) and Xanax to calm me down at night so I could fall asleep! Trying to fall asleep with tinnitus is extremely difficult!

For whatever reason the tinnitus started to resolve itself (maybe it was the meds?) and by December of 2020 it seemed like the tinnitus was gone.

However, reading through some of these posts I knew tinnitus was sneaky and could come back. I made it through all of 2021 tinnitus free! I even made it through 2022 up until this month. I don’t know, for whatever reason it has decided to come back! I’ll keep you posted for how long. Looking for my Xanax now.

 

@Michael1122, you should start your own Success Stories thread, I'd be interested to track how you fare.

 

Lol maybe I should?

This morning when I got up there was no tinnitus. I made the coffee, petted the cat, sat down to scroll through the phone, sipped some coffee and suddenly I could feel my right ear starting to feel full and then the popping started, but only for about 5 minutes. That was about 35 minutes ago. I’m now eating oatmeal and drinking more coffee and there’s no tinnitus.

I’m trying to think back to March 2020 how the tinnitus was in the 1st few weeks - if it was sporadic like this. I think it was and then progressively got worse and then eventually got worse. Fingers crossed this is just a blip and it’ll go away.

 

How are you feeling right now? How is your tinnitus?

 

Looking for updates! How are you now Mike?

 

Judging from your later posts, your tinnitus got stuck in a fluctuating but permanently bad place after your subsequent trauma.

Should be a warning to all success story posters.

 

After everything I’ve gone through, I’m still alive... I would consider that a success story.

 

I guess so. Goes to show how standards of "success" can be adjusted down...

Your story is quite interesting. It seems your success was really mostly about tinnitus getting quieter, although there was some habituation mixed in.

But since your trauma in 2021, it seems you have had trouble re-habituating. Can you shed more information on your story? What is the difference? Volume?

 

I wouldn’t say that my standard of success was adjusted down so much as my understanding of what is important in life has been dramatically reprioritized.

Life with severe tinnitus is hard but it is the only life we have. And there are still many beautiful moments to be had. So it is worth the effort to live it to the fullest.

 

Glad you found your way. Myself I am pondering if the effort is indeed worth it.

 

@Barry098, can you provide more information about your hyperacusis? You mention it in passing, but do not elaborate. I suppose it was mild and went away at some point, likely well before tinnitus did?

 

This story continues to amaze me. Both the severity, the strength @Barry098 had, if not fearless recklessness (playing in the band)... and the complete remission after a long time.

I hope @Barry098 comes back to add some more info. And of course I hope he'll regain silence again.

 

@Barry098, thanks for sharing your story. I found it very inspiring.

Do you still play in bands? As a musician of 35 years, I’m wondering if there will ever be a day when I can return to doing the thing I love.