My Tinnitus / Pulsatile Tinnitus / Hyperacusis / TTTS Continue Improving After 5 Years

Thought I would post as I seen a great deal of newcomers in rough shape. Please feel free to PM should you have questions or need to vent to someone whom understands.

I continue to improve with big strides being made mid 2019.

2015 acoustic shock onset but I think poor spinal health was a contributing factor.
Developed bi-lateral-multi-tonal tinnitus, hyperacusis/reactive tinnitus, pulsatile tinnitus, chirping and TTTS.

Tinnitus Level: According to Tinnitus Handicap Inventory, I have gone from Catastrophic (5) to between moderate and mild (2-3). Of note, my onset level went from mild to almost gone then I made the mistake of listening to binaural beats shooting it to what I consider beyond catastrophic levels. I'm not kidding when I say it was like a hair dryer blowing in my ear. I told my wife I was going to kill myself and to forgive me. I should note that my tinnitus is never constant in behavior but always morphing. About two years ago it came in too many forms to count but now there's about 5 versions that come and go at random. Make no mistake there's always a version present. For the most part it's a whispy, leaky air compressor sound. Onset was constant whole tone... B to be exact. Binaural beats video gave me 2 new tones tea kettle, jet engine and cicada. Year after pulsatile, somatic and chirping tinnitus were added.

Hyperacusis Severity: From sitting in dead silence due and constant, substantial pain to now tolerating 85 dB pretty well. I was home bound as the human voice would cause my face to "burn" and my TTTS to go insane. Tolerance is frequency dependent but all in all I can live a normal life. I was able to mow my lawn for the first time this year with acrylic "full" dB cut ear plugs. Setbacks from years, to months now days resulting in slight pain and elevated tinnitus.

TTTS: From sharp staccato spasms upon any sound to "firing" occasionally beyond 85 dB. About 2.5 years ago it would make me dizzy. Overall, I lost some balance but now 97% of it is back.

Reactive Tinnitus: Almost gone, but still sensitive to certain frequencies. Elevated levels last a day or so. Many consider reactive tinnitus a non-"thing" but rather a symptom of hyperacusis. Heated debates occur over this but I have other stuff to worry about.

Pulsatile Tinnitus: from intermittent 6/10 to 1/10.

Chirping: from shotgun stutter and electrical shock sensation to short-lived intermittent with minimal sensation. At one time this was soul sucking.

Somatic Tinnitus: Right side of face/head only. When I push on heat it created an independent static sound. Volume has gone from 7 to 3 but this is hard to quantify. Doesn't bother me now after getting past initial disappointment.

The really good part is all symptoms are getting better with big changes happening mid 2019. Interestingly, although the Tinnitus Handicap Inventory places me at a moderate level, having experienced what I have without knowing the inventory I would put myself now at a 1. I feel very, very fortunate. There are days (1 day/month) where I think it's going away but I've learned my lesson not to get my hopes up... Ha! This to illustrate how much better it's gotten and just to be sure it's not habituation but actually volume level.

The frustrating part of all this is there's no concrete "rules." Some get better while others stay the same or get worse. However, I do think in most cased it does get better. Another thing to keep in mind is that if tinnitus levels don't actually decrease, chances are you'll get used to it. I've come to know many people who have had it since child birth. According to the Inventory (sound level) a few are considered between 4-5 and guess what, it doesn't bother them in the least; more of an awareness.

Thus stuff sux complete arse, but your situation is most likely to get better.

Stubby

 

Such an amazing story that your tinnitus improved after several years.

 

I think I'm now at what my T was supposed to be like. The past 4 years have been a slow recovery from the binaural beats. I can't advocate enough for people to stay away from these sorts of things. Only natural sounds...stream and bird video/audio works wonders for me.

 

Amazing recovery and so glad that you are back to normal now. Do you ever struggle with anxiety/intrusive thoughts about sound levels etc? I suffered a hyperacusis setback at the end of last year and am now 90% recovered but my short-lived relief has been replaced with ruminating about dangerous noise levels. I can handle most everyday noise but I am incredibly fearful of things like fire alarms and the prospect of all my progress being erased and ending up back at square one. Unfortunately life and the real world is unpredictable and you have to learn to live your life - I try and mitigate this by always having a pair of earplugs handy but this fear is honestly starting to hold me back. Have you dealt with similar situations?

 

I also feel the same way!! You have to be careful but also learn to relax I think. Not every sound will damage your ears but I would not go to concerts and stuff.

 

Great success story! I experience all the same symptoms you describe. My worst time was almost a year ago, but gradually improving.

When you say to avoid binaural beats, did you still use other sounds apart from nature sounds? I enjoy various selections of ambient backround music, acoustic/musical neuromodulation, bell melodies etc. But I do stay away from binaural beats, for some reason I can't quite put my finger on - they just don't feel right to my ears. By the way I think everyone with hearing problems should avoid "Tibetan bowl" music - I nearly damaged myself within the first seconds of one such video on YouTube. Also I used to find white noise/pink noise helpful when my tinnitus was loud, but now that it's quieter I find those sounds irritating to my ears. River and birdsong sounds can still be helpful unless they make my tinnitus louder which happens on certain days.

 

I'm not back 100%, but I don't worry or obsess about sound levels within reason. I had to use a chainsaw too weeks ago for an extended period of time using acrylic musicians IEMs as plugs and muffs with no issue. Last summer this would have not been possible; not even close. This stuff is crazy. I was on hold (telephone) the other day and some thing produced this crazy high pitched squeal. This irritated my ears more than the saw did. I hear that many people once reaching a certain state of healing, progress sky rockets. I would agree with this based upon my experience.

 

For the past two years I only use birds and river sounds here and there (2/month). I try to stay away from masking as I don't want to depend upon it. I may go back to using it if for some reason I digress, but at this point I'm so very lucky to be where I'm at. As I type my bad ear is a whisper. Never would have imagined this 3 years ago. Interestingly, about 4 months ago both ears volumes lowered to what I would call a .5. I actually started to panic a bit due to the odd silence. Think of the experience people encounter in sound proof rooms.

 

Checking back in for those in a dark place. Please hang in there. As mentioned, I, like you was in a dark, dark place. I keep improving after 5 years in with most dramatic this the past 6-9 months. To be clear, yes I portion of it is habituation, but I can tell you without a shadow-o-doubt that my actual volume has decreased considerably with a few tones almost gone....main tone still here. Gone is the oscillating siren in left ear and electric chirping in right (95%). I feel normal again and now remember what it was like to actually like living. My thoughts are back, my joys are back, my focus is back.

Recap: Multi-tonal T, Pain H, Pulsatile T, TTTS, slight snowy vision (comes and goes with muscle tension).
Cause: NIHL/AS (testing guitar amplifier/loud main speakers)
46 years old.

I believe I'm a success story. I'm 4.5 years in with bilateral T and at one time significant H due a bevy of setbacks. At one point in time I was considering a cease of employment due to H. Typing lightly on a keyboard hurt. Shutting doors lightly caused searing/fire pain. Aircraft flying above my home whilst I was in bed with covers over my head hurt and engaged my TTTS. Creaking wood floor hurt. At time of the last two sentences I had a German Shepherd bark 2 feet from my head and I almost passed out from pain and endured a substantial setback..obviously. A this time I though I would never heal. T at its worst was just like having a hairdryer pointed at left ear, sensation and all. I told my wife that I was going to "end the show" in the event if no improvement. I have to admit the hairdryer arrived two weeks after onset and lasted for a short time, but still remained at "leave the party early" levels. Not good.

Well, a week ago I played my electric guitar between 70-82 db (seated indirect of amp) without hearing protection and 93 dB with 10 dB plugs in for 10 minutes yesterday. At the same time my T is the lowest it's been for the longest duration since onset. At its worst, T was a 1o on the rating scales, today I consider it a 1-2..ambient hiss with slight high end. So insanely grateful. I know this sounds cliche, but if I can recover, anyone can. My situation was noise indued, but I have to add the fact that my overall spine health was terrible due to abuse over the years and stress levels through the roof.

What helped:
1. Never talking prescribed or OTC meds....totally "get" those who do.
2. Not plugging when possible...learning my boundaries

When noticeable improvement began
1. Physical therapy on overall spine..terrible forward head posture
2. Smoking cigars.....I know, but I'm telling you it helped relax neck/head muscles (never smoke prior). I guess there are studies demonstrating this not uncommon (shown some by folks here).
3. Stiff drink upon possible setback (never really consumed prior). Same result as #2.
4. Job change...stress much less
5. Not hibernating after setback. Exposed myself to noise the next day (after 3 years in)
6. "Learning" muscles in head and neck; actively concentrating on relaxing them...very hard to do.
7. Caring friends and myself engaging in internal and corporate behavior which tends to trigger many folks here so I will refrain from outright mentioning.
8. Listing to, and learn the lessons I needed to learn.

Could recovery simply be time related, yes, but I do "know" the second list above accelerated progress? At present I never plug unless playing guitar or knowing dB will be above 85. I had terrible setbacks. I found what works for me, thus mileage my vary. As I type it's magnificently quiet...family stirrings are masking what is there almost 100%. Could I digress, sure, but if my recovery ends at present (T levels) I'm one lucky knucklehead. As the ole McDonalds jingle goes....I'm love'n it. Please fell free to reach out if need be.

Stubby.

 

Great great succes story!! Thank you

Have you ever had an audiogram made, to maybe confirm the reason for your tinnitus (noise damage)?

 

Congrats on your recovery, @StubbyJ!

Mary I ask what kind of physical therapy you had on your neck?

Like you, my tinnitus & hyperacusis is noise induced, but I also have a really bad neck. I had started to see a NUCCA chiro, but he pressed on my ear during my last adjustment making my hyperacusis worse. It was pretty frustrating, and I’m wondering what other options might be available. Thanks!

 

Yes. Loss in the 6-8K range both ears.

 

I guess you would call it traditional physical therapy home exercises to awaken dormant muscle to counteract overcompensation of the neck, jaw and upper trap..

In combination with these guys/technique: https://www.motioncare.com/patient-care/

I describe it as manual physical therapy. They literally move the facet joints with their hands. It's a rather interesting sensation. Equate it to a chiropractor without the force witch all too often weakens/stretches ligaments and whatnot.

I can send you my home routine if you can assist with the technical side of things.

 

Hi, Stubby.

Was your noise induced tinnitus and hearing loss cumulative or from one traumatic event? Mine is the latter.

I have multiple tones in both ears but very high frequency range plus the roaring hair dryer sounds which are not as loud now maybe because I'm taking meds for my tinnitus since the levels were too high for me to bear after first few day's of onset. I even tried reducing the main med called Xanax by half milligram for two nights (I also take second dose during afternoon) and my ears started spiking like crazy again.

I recently discovered I have reactive tinnitus with my right ear which really complicates things. I get weirdest dominant sound which goes off every time my fridge compressor goes on. It does stop however when the compressor goes off but still 20 some minutes of added irritation/discomfort. It reacts to many other things as well like my car heater/defroster, running water, radio/tv, phone calls, even my voice.

The worst thing though is that I can't play the piano because I tried it a week and half ago for 10 minutes, not loudly, and my reactive ear spiked for two consecutive days badly.

Did you have TRT or CBT with sound therapy or any professional counselling for dealing with anxiety, panic attacks, PTSD?

It's almost two months now since onset.

 

Well, the good news you are two months in which leaves a great chance of further recovery! I'm no way an expert or versed on the subject, but simply one whom has lived through it. I have not tried TRT or CBT. I decided I was going to face this crap head on and not add any further variables to the matter thus stayed away from meds and protocols. I learned my lesson after viewing a binaural beat video and was suckered into electoacupunture which in the end made a wore impact than initial T. I would do what you can to simply relax your nervous system is in full blown panic mode.

Regarding reactive T: Some on here would lose their mind with you calling it reactive T as they say there's no such thing, but rather it being a symptom of H. The good new is, if you lesson T, You will lessen the "reactive T." I have this as well. It increases after blowing the snow, which a I can't avoid. It lasts for about a day but I do believe the duration is decreasing, and oddly enough, after calming down my T is really quiet and slowly creeps back to baseline, which I'm convinced in slowly lowering as well.

Basically, I've made the decision that I'm simply going to have to live with a baseline of pain either my entire life or until this crap goes away or dissipates. I can avoid noise levels that irritate, thus live in comfort but I find that the more I live in silence, the longer this crap sticks around.

Focus on the fact that you are only two months in healing will happen. Patience is a big thing with this stuff...I'm terrible with it.

 

@StubbyJ, how are you doing these days? Did you have any pain hyperacusis symptoms by any chance, such as trigeminal neuralgia/jaw pain? Also, in addition to your spine issues, do you or did you have TMJ issues by any chance? Trying to figure out my co-factors for my own hyperacusis and I suspect my neck/jaw are implicated.

 

I would be interested in these exercises if you can share them.

 

How long did it take for your dizziness with TTTS to go? I'm dizzy 24/7 and TTTS started mid October this year. I'm suffering so bad

 

I'll be honest, I don't remember. It took about two years for me, maybe longer, I think.

At this point I'm 90-95% "cured," with it randomly "activating" at the oddest times.

Interestingly, my head/ear needs to be in a certain position for it to spasm. Mostly with human voices.

 

An update for those in early onset in complete panic mode...

At this point I don't remember timelines and whatnot, but my life is now back to "normal" for the most part sans playing in loud bands. I'm now mowing the lawn and running chainsaws with double hearing protection (custom earplugs and earmuffs). Daily life as far as entering the community is of no issue. I will say that if I'm really close to a semi letting out air-breaks my hyperacusis will remind me that I'm not normal, but as long as I relax and distract myself, I'm ok with no setbacks. No affiliation whatsoever, but Alclair Audio in Osseo, MN is very reasonable in $.

My tinnitus volume beyond baseline is for the most part, controllable. Baseline is now a much welcomed diffused hiss. When busy, I don't even think about it until walking into a very quiet room. Don't get me wrong, I can hear it 100% of the time, it's simply not as intrusive. It gets louder when I expose myself to busy environments for long periods of time such as sports bars or sporting events. Mowing and chainsawing with double hearing protection used to raise volume but not anymore.

• TTTS - 95-98% gone.
• Pulsatile tinnitus - 95-89% gone. This is very much tied to the muscles in the front of my neck.
• Electric spark/chirping tinnitus - 95-98% gone - comes back randomly. Still as fun as ever.

There is hope... it simply takes a long time. I think I'm 7 years in with notable changes occurring in year 4 and rapid improvement in the last 2 years.

Theryago.

 

Your story gives me hope! Thank you! I’m about 1 year into suffering from tinnitus/hyperacusis post acoustic trauma. It’s by far the most difficult thing I have ever faced in life. I hope you continue improving until your tinnitus goes away completely (I know 2 people who had it for years and it vanished on its own).

On a scale of 1-10, how is your tinnitus now?

 

Wow, I love reading your success story. I am 4 months in with multi-tone reactive tinnitus from an ear infection. It hasn’t improved as of yet, but your story and others remind me that I have SO much time on my side for improvement. I also like how you view sound and letting it in carefully but not overprotecting, I go about it the same way since onset and I think that has helped me not develop overt hyperacusis symptoms. I will say the longer I go on with “no improvement” the more I fear sound, but that’s all a mental game that induces more fear, and as I’m reading in my current book “The Way Out”, fear fuels pain.

Your story also gives me hope that those who experience sudden hearing loss from an event or infection can still improve with tinnitus. It might not go away completely, but that doesn’t mean I’m stuck where I am forever just because I had high frequency damage in my right ear.

I could be reading this wrong, but it seems like you’re a believer in not letting fear and keeping the brain in a fight or flight control the situation. Many here, like @Marin and @OnlyUP have experienced great improvement with the mind-body connection and “rewiring” your brain by changing how you mentally, emotionally, and physically respond to this ailment. It takes a lot of time and hard practice, but it has allowed them to not only go back to living normal lives, but their actual symptoms have improved from no more H and notably decreased/manageable tinnitus. I just feel like you have done this in your own way, and if you have, I commend you!