2 Year Tinnitus Anniversary Today — Habituated

Newly registered and first time post. Today, my two anniversary of getting tinnitus from a loud concert (worse in left ear... kind of a scrambled signal/distant bells ringing as opposed to a tone). I relied on this forum a lot in the first few months and thank you all for sharing. I thought I would share my two year experience with tinnitus.

The first month or so I kept waiting for it to go away and then months 2 and 3 were very traumatic when I realized it may never go. I had emotional problems and it affected me big time, I had to build my life back one step at a time over the course of several months from when I hit bottom.

I read here a few times that it takes about a year to habituate. I would agree with that timeline because in the first year it does get better month by month, but I would probably say that it took me 18 months before I had no panic-related issues with it, and about 2 years to fully habituate to where I am now, which I think is in the category of pretty much fully habituated, i.e., "not giving a shit" about it and living normally, and no more PTSD about the fateful concert, and realizing if I hear louder ringing (sometimes when I wake up from a nap that tends to happen) that it's a temporary phenomenon and not new damage or a sign of worsening.

I only hope that I can help people who are new to T realize that there is hope and as much as it sucks, you are not alone and others have been there and fought hard to make it through the rough timeline to habituation. You can do it! The best advice I got was just to take one day at a time and get through what you need to do today.

One last topic I'd like to comment on is the challenge of getting back to normal in terms of relationship with sound in the environment. At first, I believe I had serious hyperacusis and found so many things like the sound of a TV or maybe someone listening to a video clip on a phone, very irritating (I'll call it "irritation factor") and I was panicked if a fire truck went by and would not listen to music on headphones or go back to a concert (I'll call it "fear of more damage factor"). Use your own best judgment and gather all the information you can to help you with these issues - but for me, I believe these things are psychological more than something physical going on in the ear. The irritation factor has faded slowly for me on the same timeline to habituation. The fear of more damage factor I think I got better for me much faster. After a little while I stopped living my life worried that there were cochlear cells hanging in the balance between life and death depending on how careful I continued to be. I live my life now with perspective that what could damage my ears now is the same that could have damaged my ears at any time prior to this. So for example I have no problem listening to music with headphones (I use Beats Studio) and had no problem going back to concerts pre-COVID19 with proper protection (I use Earpeace plugs, which are great, if I had them in 2018 I would probably not be in this situation. My wife had Earpeace plugs at the same concert and she is fine.)

Stay strong friends! Much love and support.

 

@Gopher93

Thanks for your story. Has the tinnitus loudness stayed at the same level or improved throughout the 2 years?

 

Honestly Renee, I think the baseline is about exactly the same as it was at the beginning. Not better, not worse, but on the bright side I think there are fewer flare-ups and less fluctuation than there was early on.

 

Hi @Gopher93

So great to read your story. I'm so happy you're able to live your life again.

I needed a post like yours right now. I'm feeling a bit sorry for myself. I'm two months into developing T and I managed to pick myself up and get on with things pretty good after my initial panic at onset.

However, a few days ago I had a moment of fleeting tinnitus that never fully went back to baseline and is now louder than when I first developed it.

So I suppose my question is - did you ever experience any spikes/fluctuations? And did they settle down after a while?

Kind regards

Steph

 

Steph I recall seeing a number of people on these boards refer to the first few months as the "dark days" and unfortunately I believe that is true. The first few months are really hard because you are dealing with something new and scary. I won't sugarcoat it - the first few months are really tough and you have to take it one day at a time. If you are like me, you are on a daily march to habituation. Unfortunately that may take longer than we want it to take. And yes the spikes and fluctuations were present in the first few months and maybe even in the first six months. They may still come around but I don't notice them or psychologically I am able to ignore them and know that they are temporary. I got my tinnitus from a traumatic event so I have been able to come to terms with the fact that the damage is done and I need to protect my hearing from new traumatic events. Hope that helps but I know everyone is different.

 

@Gopher93

Thank you so much for replying. Your message means a lot right now. I was well on the way to habituation but then this spike which came out of nowhere has knocked me on my butt. I think right now I'm just trying to find out whether spikes are temporary. I've had little spikes in the two months since my onset of tinnitus, but this one is horrific.

Anyway, I know I've already said it, but I'm truly glad you've got to the place you are now with your tinnitus.
May it long continue.

 

Thank you for this post. I am two weeks in from an acoustic trauma and I instantly developed unmaskable tinnitus. I can hear it over everything, nothing drowns it out. I knew the difference because I have had very maskable “tonal” tinnitus in my opposite ear for 15 years. This noise I can never get away from. It’s a hissing/electricity noise.

I’m also suffering PTSD from it because it was my neighbors who set off M80s and I had no warning. I endured 3 of them before running to the car. Of course, I’m also living with the regret of being in my backyard that night and not running to the car after only 1 blast. We were moving and were in backyard packing boxes.

I guess my question is, is/was yours the “unmaskable” type like I’m describing?

Either way, so glad you’re doing better.

 

@Gopher93

Thanks for your story! I'm at the 16 or 19 month mark depending on how I count it. I don't have panic issues any more really, but I deal with varying levels of anxiety and low mood on and off. I find it hard to imagine that in 6 months or so I could achieve habituation.

So I'm just wondering if you could a) elaborate on how you are defining habituation? Are you able to be in quiet rooms? Are you able to go for a day or more without thinking about it? and b) explain the process of going from "just not panicking" to habituated in only 6 months?

I feel like I've improved a lot in my first year or so but I still worry a lot about whether I'm still making progress and if I can expect further improvement.

 

Thank you so much for this post, it really brings calm and hope. I'm at 11 months now and still occasionally struggling. And feeling bad due to so many people reporting being habituated around 6-7 months, and here I am... So seeing your post about your habituation process taking quite a long time, really makes me relax and feel much calmer and hopeful, and I'm really grateful for you sharing your story. Thank you so much!

 

Same. 43 year old man and still regularly crying my eyes out after 7 months.
Main problem for me I guess is that mine is maskeable with very low volume birds chirping... so when I turn that off I hear a loud shhhhhhh.

I wonder if it's better / habituation would go faster if I just listen to the sound and tackle it head-on.

Silly thing is that when it is loud , immediately I get anxious and we all know what happens then > it only gets worse > and repeat.

 

I am 11 months in as well and struggling all of the time. I also feel bad.

I could not agree more.

 

@KWC Let's see if my "theory" makes sense. Theory being that most people on here (the people that struggle the hardest with tinnitus) are people that are already anxious by nature.

I know for a fact that my girlfriend would be less affected by this. I always have been a very worry-prone, anxious guy.

 

You are absolutely correct. I am highly anxious. To amplify my situation I also have TMJ and was put on Klonopin by a doctor and am trying to taper off of it as well. I'm not sure what caused my tinnitus (right ear only) as I had an ear infection in January and have TMJ on my right side with a "normal" standard audiogram. My tinnitus is a higher pitch hiss/static type of sound.

 

Thanks for describing your journey to habituation. I've suffered from Tinnitus of various degrees of severity all of my life. I have yet to completely habituate, but I utilized a lot of denial and distraction techniques early on to cope with the experience. In my case, I didn't even know that I had tinnitus until about five years ago; I really believed that everyone experienced the same sound all the time (for me it's a loud, high-pitched sinusoidal that fluctuates in tone).

My progressive success with habituation has been utilizing "grief work", medication (anti-depressants), and meditation. For the first year or so, I tried to protect my psyche from the tinnitus label by not recognizing it as a threat (because it is a threat), but what I was actually doing was invoking denial. I thought it made me weak to be bothered by it, and so I never faced the sublimated anxiety it was causing. Once I accepted it in all the subtle ways that my brain interpreted the experience, I was able to start the "grief work" that allowed me to habituate. My grief work consisted of things like "fear of it drowning out my thoughts", "fear that it will get worse", "fear that it will arise or come to the fore of my attention at inconvenient moments", "fear that it will drive me insane", etc, etc. Each fear had to be faced and processed by being present with the experience and the qualities of the "fear." I also believe the whole ordeal has strengthened my character.

It's good to hear about people that have recovered and speak with a voice that seems "real-time" and genuine. Also, describing the post-habituation experience, and how habituation is not a cure (you still experience tinnitus), but instead a remolding of our brains and an evolution of self because that's what I "read in" to your post.

Again, thank you.

 

Do you take anything for anxiety or what do you do to manage?

 

I have Alprazolam EG (which is Xanax) here lying next to me but I only take it when I can't handle it anymore on my own.

Last time was last week at around 4 am in the morning when I heard a new loud hiss in my left ear (the "good ear" up until now) and started flipping out.
Once you give yourself over to "flipping out" you just get worse and worse.

Mind you before I got tinnitus I never had a single panic attack in my 43 years on this planet, but I always knew that I would be prone to if ever something would go wrong in my life.

I just got back from the health store and got Chamomile tea, Melatonin and Cannabis Sativa (freely available here).
I am really trying to get through this on my own as much as I can but I guess it feels nice to have something available when needed.

I really should start picking up meditation or something, see if that helps.

 

Did the hiss go away? Also forgot to ask how much do you mask throughout the day?

 

Good question.

When I feel strong, I don't mask.

When I feel weak, I mask with birds and rain.

I have some sort of reactive component too > MacBook Pro fans make my ears beep for example (I installed a plugin that allows for control over the fans).

When I sleep, I mask with birds and rain again and a low rumble, they play on my MacBook at low/medium volume.

Hiss is still there - Fullness is still only in one ear (the right one), that's also the ear that got the low roar (horrendous) tinnitus in the beginning > pretty sure that's the most messed up one.

How about yourself?

 

My tinnitus is in my right ear. It sounds like a high pitch loud soft eeeee. It started in January. I'm not sure what caused it. I had an infection in my right ear, I took Augmentin at that time and was eventually diagnosed with TMJ on my right side as I experienced a lot of facial pain.

I have had 3 audiograms and all are good to 8 kHz. I tried to match my tinnitus frequency, I think it is around 11.4 kHz.

I tried WNGs but they did not really work. I have to have background sound pretty much 24x7. (I use the ReSound app on my phone and play running water sound when I sleep). Anxiety was so bad that my ENT put me on Klonopin (bad idea... trying to taper).

Like many others, I'm trying to figure out what to do next. I'm ok habituating but I think it will take a long time for me to get to that point.

 

@KWC

You doing any better with your tinnitus? I’m still looking at TMD. I just not sure who to see. I may go to Mayo Rochester.

Another TMJ/tinnitus article:

What is tinnitus and how does it relate to TMJ?



Tinnitus is a condition in which a patient experiences a persistent ringing, hissing or buzzing sound in the ears. Tinnitus can be caused by any number of issues, including high blood pressure or hearing loss. In some patients, this condition may be a result of a temporomandibular joint (TMJ) disorder.

If a jaw is not functioning properly, as is the case with a TMJ disorder, muscle imbalances, swelling or inflammation in the jaw can put excess pressure on the eardrum. Tinnitus can then develop as a result.

If you’re experiencing tinnitus along with other TMJ symptoms, such as jaw or facial pain or locking, clicking or popping of the jaw, you can see an oral surgeon for an evaluation, including X-ray imaging for a better view of the jaw. If a diagnosis of TMJ disorder is made, the surgeon can then recommend the most appropriate intervention.

Even though you may see an oral surgeon to get a TMJ diagnosis, it does not necessarily mean that the treatment will be an invasive one. These specialists extensively study the structures that comprise the jaw, so they are uniquely positioned to make such a diagnosis.

If TMJ is determined to be causing or exacerbating your tinnitus, you may get some relief from a conservative treatment such as wearing a mouthguard or splint during sleep.

In some cases of TMJ, a structural defect of the jaw may be at the heart of the condition. If so, a surgical intervention may be needed to correct the defect and resolve the TMJ symptoms. Similarly, if your symptoms don’t respond to non-invasive treatments, surgery may be considered as a next step.

At the least, tinnitus is a mild annoyance. At its worst, the condition can greatly interfere with your quality of life. Regardless of the severity, you don’t have to suffer from this condition if it is a symptom of your TMJ. Effective treatments for the TMJ may be available. Contact us at Commonwealth Oral & Facial Surgery and schedule an evaluation to learn what interventions may help you.

 

@just1morething

No change, thanks for asking. I guess for now I will continue my splint therapy. I tried WNGs but they did not work much.

 

I hope you are doing as well as can be.

 

@just1morething @KWC

Well for sure, muscle imbalances of jaw from inflammation can cause swelling and thus TMJ. Muscle inflammation is actually gum inflammation. What can cause this is clenching, sinus or ETD fluid infection, or bad hygiene. Much of the time, the atlas - top of neck is also off balance. All this can also cause tinnitus.

Most with TMJ have a deep jaw plane, so they have more gum volume. The best way to solve TMJ, besides using a mouth guard is to gently flow warm water 12 times to each side of mouth and then middle and drain - twice a day before brushing teeth. Only do one area at a time and drain. Use a super soft tooth brush with a natural foaming toothpaste and gently massage gums under teeth. Then gently flow water a few more times to middle of mouth and each side. One area at a time and then drain without bending neck to much over sink. This will help with swelling and inflammation/infection and TMJ, but may not lower tinnitus.

Medications can certainly cause tinnitus, but when medications are used for ear infections caused from sinus and ETD fluid travel - the medications did not cause TMJ - the infection fluid travel from sinus and ETD did. So if one has sinus or ETD infection with fluid travel infection to ears - it's infection fluid that caused tinnitus or meds used to clear infection. The meds would cause high pitch tinnitus, where infection fluid causes a low lower softer pitch. TMJ itself when caused from infection fluid can only associate to a lower pitch. Clenching of teeth or bad gum hygiene can cause nerves to be become inflamed and swell in teeth gums/muscles in jaw. This - nerves - can cause both TMJ and higher pitch tinnitus.

 

@KWC

Maybe it is just inner ear damage. I would think the brain would compensate, but in certain people it doesn’t.

I inquired about Ketamine treatment recently. They have been calling and leaving messages to see if I want to try it. Maybe it would “reboot” the brain?

My head is very noisy today. It sounds like a swarm of bees.

 

@Greg Sacramento

Thank you for the feedback. I hope you are doing as well as can be.

Thanks,

KWC