Tinnitus — My Journey Back to a Normal Life

Well, I guess it is time for my post. Even though it's just a summary, you better be in for a long read...

Disclaimer
My tinnitus is nót hearing-related. Still, it might be interesting for some people who have this diagnosis, as I did incorrectly get the "hearing loss" conclusion from one ENT as well (though that appointment is not further mentioned in this story).

A small note
As most of you know, behavior of tinnitus can differ greatly per day, or even per hour/minute. To keep some overview, I based the story below on my "average" experience per month. Obviously, a good period could still have a few bad days, except for these last few months. (Also, my "bad" days later on were still much better than "good" days in my worse periods.)


Onset of tinnitus - the past

April 22th, 2019

When lying in bed, I noticed a faint and strange tone in my right ear. A bit like "EEEeeeeeeEEEeeeeeeEEEeeeeee", continuously going up and down in volume. I recognized the phenomena immediately: tinnitus. A few years before, I had experienced something similar, though it was a straight tone at the time. Earwax had been the issue at that time, so I decided to get my ear checked out.

The family doc saw a bit of fluid behind my eardrum. As he concluded that this was the probable cause, I wasn't too worried and made an appointment with the ENT. There was a bit of a long waiting time (few months), and I was somewhat annoyed because the loudness and amount of tones was increasing weekly, but knowing that the ENT would fix it, I endured this without trouble worth mentioning.

The big date came: July 15th. Happy I was, walking into the clinic... tonight I would sleep well again, instead of the irritating 4 hour rythm I was stuck in. Sat in the waiting room for about 20 minutes, then I got called in. The ENT kindly asked a few questions, checked my ears and nose and did a few tests.

[Paraphrased]
"Nothing to see here. No fluid, no hearing loss... don't worry, you're fine."
Uhm... those weren't the words I expected.
"But I'm hearing tones and hisses. Certainly there must be some wax somewhere?"
*Headshaking*
"No, all clean. You'll just have to learn to live with it."

In short, that was the message: nothing to do here, this will be the rest of your life. At first glance, I probably seemed to take the message fine: I thanked him for the examination and walked out, back to the car. That same night though, hell broke loose and all kinds of sound were torturing me, even more than the last few weeks.

For the next two months, I would get 0-2 hours sleep a night. The days were just more of the same torment: I had an unsynched orchestra of loud tones, hisses, buzzing and crickets going around. 24 hours a day, seven days a week. I remained active at work to have some distraction at least, but my social life deteriorated: I spend the evenings scouring of the web, searching for possible causes. Though learning a few interesting facts about my tinnitus at times (sound reactivity/head movements to change pitch and volume), nothing really useful came out.

Once October hit, I felt done with life. The volume and amount of sounds kept increasing, I stopped counting once I identified twelve of them. I barely functioned in my job anymore. I had stopped talking to friends or family, giving nothing more than an occasional one-word WhatsApp response on my "best" days. All I wanted was to go to sleep and not wake up anymore. Even though I did not want to consider suicide, if someone would have given me some magical button that would end my life immediately, I'm confident I would have hit it right away.

Jumping forward - the present

Just a little more than a year after the original ENT examination. My days are silent again, and I sleep about 7 hours a night on average. I have an active social life again (for as much as Covid19 allows me to) and my performance at work is optimal. Where I just wanted to die a year ago, I'm now living life once more.

What is the exact situation of my tinnitus?

Am I physically cured? Not completely (yet).

I currently have two types of silence:

1. "Fake" silence, where tinnitus is audible in the background, but I don't register it consciously. I can sit quietly on my bench, or walk around in some nature area: the experience is full silence, as my focus is elsewhere.
2. "True" silence, where I can search for it as much as I want, but the sounds are nowhere to be found.

Right now, these two are active on a intermittent basis. I can have whole days with true silence: or likely some periods in between might be the fake one, since I stopped actively listening for it a long time ago. But occasionally I check, and I estimate that 40% of these moments have no sound whatsoever.

My tinnitus mostly depends on my body posture. Globally, it mostly comes up when I'm lying down. Sitting gives some tinnitus activity, while standing or walking around usually results in no tinnitus at all. When reading this, you might expect me to avoid the sitting or lying down, but this is where the well-known term of habituation kicks in: I don't notice it. Besides, I do have periods where sitting and even lying down don't result in having tinnitus (the true silence). As months progress, these periods are slowly occurring more often and becoming longer, following the pattern that my tinnitus has had since November last year (more on this later).

Occasionally, I suddenly do register the sound while tinnitus is active, usually due to a specific trigger (i.e. someone mentioning the concept of tinnitus). But at this point, another point of habituation kicks in: in the past year, my brain slowly learned to search for distraction immediately. It doesn't cost me any energy or mental leap, I just focus on anything else automatically, and my attention for tinnitus is gone again.

So what changed? - My path to being alive again

Not simply one thing. I did not find some miracle cure that instantly fixed my tinnitus. However, I did manage to find out what caused it, and the steps I took next helped both my body and brain to deal with it.

At some point, I stumbled upon an article online where tinnitus was mentioned as a possible symptom following a car crash. I'm not exactly a medical specialist, but I'll try to explain how I understood it at the time.

Tinnitus can be a result of whiplash: the neck muscles overstretch in an instant and are extremely weakened. In turn, the resulting nerve signals that are being send to the brain, can accidentally get "caught" by the body's system for hearing, as these signals are wired closely to each other. So technically, if this happens, you are not hearing sounds: you are hearing nerves.

To be fair, this theory sounded (pun not intended) a bit far-fetched to me when I read it, and I actually dismissed it at first. But a few days later, the following happened. I finished another "research" session and shut down the pc upstairs. Subconsciously I pulled out my phone and wanted to descend down the stairs, which suddenly triggered a memory from roughly six months before. At the time, I did exactly the same (shut down and walk down the stairs with my phone in hand), but I then made some weird slip with my feet and fell down instead, having a broken phone and sour neck/shoulder in the end. It had actually taken a few months for my pains to recover at the time.

Promptly I wondered when this exactly happened. First, I booted up the PC again and searched for mentionings of people getting whiplash injuries from falling down the stairs. This was confirmed after a few minutes, although it apparently was a rare occasion. Next, I checked the dates of when I bought a new phone, and when I had a message "gap" in my WhatsApp (due to not having a phone to app with).

The result? April 20th - 27th.

My phone broke on April 20th, and two days later my tinnitus started.

Coincidence? Maybe, I wasn't sure. But it was enough information to at least investigate upon. If the article was correct, then something should be wrong with my neck muscles. So I went to the physio, who let me do a simple exercise. Lie down on my back, and try to keep my head slightly lifted up for 20 seconds.

As much as I tried, I couldn't maintain the position for even two seconds.

After a few more checks, he confirmed that my neck muscles were extremely weakened, and he scheduled a few more appointments.

This gave me something to work with. I actually had another ENT appointment at a specialized tinnitus clinic in Germany (Regensburg) in the next week, so I wondered if they would know about a case like this. I went there with my father and got four different examinations in a day. The ENT that shared their conclusions in the end told me that I clearly had no hearing loss at all: my ears were not the issue. The jaw seemed to be fine as well (though I have some other symptoms there since last year, but never mind that for now). Sadly, their physiotherapist had a day off when we were there, but the ENT confirmed that tinnitus due to neck injury is a clear possibility. After hearing out my story, he suggested to keep doing physiotherapy for my neck, and although he made no definite promises, he did say I had a fair chance of getting improvement.

So this is what I did.

For the next two months, I followed the exercises described in this post. I was only two weeks in, once I already noticed some improvement: the sounds stopped increasing, both in volume as in amount. In the weeks after, I started observing a slight decrease in volume, although I actually didn't dare to believe this at the time.

About halfway December, only six sounds remained: the others were completely gone. And even the remaining sounds decreased in volume immensely. I used to rate my sounds at 8-9 on a 10-scale, but at that point I rated them at 1-2. Things were not perfect yet, and keep in mind that all these numbers are averages (there were bad and good days), but as there was clear improvement, I slowly started loving life again. In the first few weeks of January, I actually had some periods of real silence again, and my sleep was nearing six hours per night.

Sadly, this constant improvement didn't keep up at the time...

I just happened to catch a cold halfway January. In merely a few days, my sounds came raging back at me: the exercises no longer seemed to have any use. Even though the cold was gone within a week, tinnitus remained.

At the start of February, I lost my will to fight and called in sick. Devastated by the renewed torture, I started thinking that I had imagined all my earlier progress. Once again I did not sleep, yet I mostly remained in bed. I went to the family doc once more, but he never saw the progress I made in the months before: despite the good support he gave me in my first six months, I experienced him as quite dismissive now. (In hindsight, I'm sure he wanted to help, but likely he was out of options.)

I didn't get diagnosed with it, but I'm fairly sure I was at the edge of depression.

A few days later, I got a text message of an acquaintance who works in healthcare. She heard about my sleep issues and suggested a device called the "Alpha Stim", something that is used a lot in her area of expertise. As I completely lost my willingness for social help, I responded in an extremely dismissive way... something I still regret at this point, even though I understand why I did so.

Still, having no options at all, I googled the device's attributes and reviews. I found that it is a type of electrotherapy for the brain, and it is used to battle pain, anxiety, depression, and sleeping problems (and more, but not related in my case). Reviews were extremely positive, and since it had no risk of addictiveness like drugs, I did rent one unit.

This turned out to be my best decision in that period. My symptoms of depression faded within three days, and this renewed my will to fight. I started doing sports again, hoping that my muscles would recover again. I bought a spinning bike for the rainy days, and started working on my personal computer projects once more to distract myself from the sounds. In a few weeks, my sleep recovered to 5 hours per night, and the sounds started diminishing again. (In hindsight, I suspect this would have happened without the new sports as well: colds tend to do weird things to tinnitus. But it was good for my mental state nonetheless.)

At the end of April, I was fully back on track with my life. The first moment time I noticed this was on May 25th: I stopped doing what I was doing for a second and realized that I felt alive again. Tinnitus volume in general kept decreasing and was already below the state before I caught the cold. The only issue I still had was waking up in the middle of the night and occasionally starting to get annoyed and worried about one specific jaw issue (it cracks since about 10 months, never did that before), thinking that my sleeping posture might worsen it. But this issue is (probably) not related to my tinnitus: and even if it is, then the slow reduction in sound over the months only suggests that it is getting better, not worse.

Tinnitus itself does not bother me anymore if it is there while I'm lying in bed. I don't use sound enrichment, and I eventually stopped using the Alpha Stim as well, since I no longer needed it: I am not dependant on any external device anymore. I can sleep where I want, whenever I want, whether there is tinnitus or not. These days 7 hours of sleep are quite normal for me.


Weak attempt to illustrate progress over the months


Behold my wonderful graphing skills. What I'm mostly trying to show is the default pattern for my tinnitus has mostly been that it becomes worse over a set of days before it drops more and becomes better than before. This was mainly noticeable with the neck exercises: I usually got a small spike after doing them. Then the spike dropped quickly to "normal" tinnitus level, and after one or two weeks the real effect was... audible? I guess.


To conclude:

In my case, tinnitus became a non-issue. My body keeps further healing itself, and for the episodes where it does occasionally pop up, my brain has fully learned how to instantly divert my attention from it.


Thoughts after

No doubt about it: tinnitus is a beast, and it has been the worst condition I ever experienced. But I don't believe it is unfixable: the only issue here is that we lack in knowledge. I'm quite positive that eventually, all my silence will be "true" silence again, once the body has fully healed again.

I just wish that the medical world would communicate better. The first ENT I got was well-willing, but at the same time horrible when it comes to conclusions. (Definitely heading back there at some point to get that cleared up: do NOT tell people to just "learn to live with it", and know that there might be more to tinnitus than just the brain.)

For those out here who just got acquainted with tinnitus: don't give up. Many cases eventually resolve itself, and others might be treatable if the right people come together. Furthermore: habituation is not a fix, and it is not for everyone... but for some, it can help to a degree anywhere from 1 to 100. I realize that it's easy for me to say at this point, since I know that my case is recovering, but if I didn't habituate to what I have, I would still be tortured for about 60% of my days. Do not refuse trying to habituate simply because some doctors have a wrong view of it. It is nót a cure, and they do need to get their facts straight and find the true physical issues and fixes... but until then, it can be a useful coping mechanism.

For those of you who aren't this lucky, and still live in continuous torment... I feel for you. I honestly hope that science will catch up and the doctors eventually find out exactly how the body functions, so that they can focus on the exact issue, and not just hand out a tinnitus "label" and send you off. I'm not a doctor myself, but I can support this cause with a donation: which I finally did. I hope it will help in all the research.

I probably won't be active on the forums for much longer, but for those who have questions, feel free to ask. No doubt I missed some details somewhere, so I'm definitely willing to fill in the gaps.

 

@Tybs that was a nice success story. Shame you too are going to leave the forums after getting better. Isn't leaving a little selfish? Why not stay to help others...

 

Well written and inspiring post @Tybs. Hope you get to 100% “true” silence soon as it seems you’re well on the way.

 

@Tybs

Thank you for posting your success story! I have an alpha stim device. I used it for about a month, but it made my tinnitus worse. I wonder if I abused it though. Sometimes I would wear it for 60 minutes at a 3.5 setting. What setting and duration did you use? I may give it another try...

 

IMHO, it would have been selfish to leave without saying or giving anything. Th

I only used the lowest settings (0.5, I guess?). Mostly because I did not "trust" the device yet, but it was all that I needed in the end.

I'd say, use it at 0.5 for at least another week, and see if anything worsens then. I would not continue if it does have negative impact at that point, but if things improve or at least stay the same, you should be able to safely continue for a longer time.

 

@ajc Apologies, apparently something went wrong with my reply above. What I wanted to say was the following:

IMHO, it would have been selfish to leave without saying or giving anything. This way (by donating, writing the story and answering questions), I can support those who are struggling while picking up my own life again. I have multiple other reasons not to remain active here, but I prefer to keep those out of the discussion.

 

Thank you for sharing your story. I do not blame you one bit, please go and enjoy your life. We wish you the very best!

twa

 

So the Alpha-Stim is not a PEMF device like NeoRhythm? Concerned about it worsening tinnitus as it has for a couple of users of that device have reported here.