Screaming Tinnitus Disappeared Completely After 2 Years

Discussion in 'Success Stories' started by Barry098, Oct 25, 2021.

    1. Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      So, back in Feb. 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 Parkinsons 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...
       
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    2. Exit

      Exit Member Benefactor Hall of Fame

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Noise
      An amazing well written story :D

      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 :)
       
    3. KBombRN

      KBombRN Member

      Tinnitus Since:
      September 12
      Cause of Tinnitus:
      Noise
      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?
       
    4. Danail

      Danail Member

      Tinnitus Since:
      October 2021 (moderate/severe)
      Cause of Tinnitus:
      caloric test
      @]Barry098, what did the therapy include exactly? Could you please share?
       
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    5. AUTHOR
      AUTHOR
      Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      @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.

      @Danail, 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?!
       
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    6. LaMarge
      Wishful

      LaMarge Member

      Tinnitus Since:
      5/2021
      Cause of Tinnitus:
      2nd Pfizer Vaccine
      @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!
       
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    7. AUTHOR
      AUTHOR
      Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      Costa Rica is nice... I certainly hope to visit again.
       
    8. AUTHOR
      AUTHOR
      Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      @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.
       
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    9. Exit

      Exit Member Benefactor Hall of Fame

      Tinnitus Since:
      01/2020
      Cause of Tinnitus:
      Noise
      Wos that was long! Thank goodness I have nothing better to do :)

      Music teacher...?! That’s insane :D 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.
       
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    10. AUTHOR
      AUTHOR
      Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      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.
       
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    11. Forever hopeful
      Depressed

      Forever hopeful Member

      Location:
      USA
      Tinnitus Since:
      2015 resolved, 4/20 L ear, increase 2/21
      Cause of Tinnitus:
      2015,noise,2020-21 SNHL
      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.
       
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    12. AUTHOR
      AUTHOR
      Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      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.
       
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    13. Forever hopeful
      Depressed

      Forever hopeful Member

      Location:
      USA
      Tinnitus Since:
      2015 resolved, 4/20 L ear, increase 2/21
      Cause of Tinnitus:
      2015,noise,2020-21 SNHL
      Which vaccine did you get if you don’t mind me asking?
       
    14. AUTHOR
      AUTHOR
      Barry098

      Barry098 Member

      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Loud Music
      Moderna
       
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