Hi My Name Is Winston, Tinnitus for 1.5 Years and Counting

Hi everyone, my name is Winston, I have been reading posts in this forum ever since I started experiencing tinnitus but I never ever properly introduced myself. I guess in my mind I always wanted to save my first post for a success story when my tinnitus is magically gone, but that never happened so here it is, my long and winding “Introduce Yourself” post:


Introduction

I am 43 years old. I have a good job, a loving wife and a healthy body that I believe to be above average for my age. I eat healthy, sleep well and exercise 5-6 days a week. I never had any health issues and the annual body checks with the family doctor always show that I am perfectly healthy.

I felt invincible because life was good.

That was all before this beast tinnitus turned it upside down…


Cause

I have always known tinnitus and have had it for most of my life, but the form of tinnitus I have had was very mild and I could only hear it when I lay down in bed or sitting in a quiet room. I believe what I had was tonal tinnitus where it was just one tone through and through. I have always believed that tinnitus is natural, and everyone has some form of it, so I never really paid too much attention to it.

Around two years ago, I attended a concert where I stood in the first row right in front of the stage. As a result, my ears were blasted by loud music for a couple of hours. My ears were ringing right after the concert and I felt something was wrong after that day.

The funny thing is, severe tinnitus didn’t start till much later…

Around 3-4 months after the concert, I woke up one day noticing the usual tone of tinnitus I was already used to but at an elevated volume. I lived with it for around two days and then the next day comes with a new kind of tinnitus I have never experienced before – buzzing. The buzzing can come in for hours and could be gone for hours at a time. It was really annoying, and it was something I cannot really get used to.

But compared to today’s volume, that was nothing. I always tell myself what I would give up just to get myself back to this stage!

I was in semi-panic mode so I went to the web and look for answers like normal people would. I read that tinnitus might be caused by excess ear wax build up so I believed hopefully that might have been the issue. I also remembered that some years ago I went to the doctor to have my ear wax flushed out and that it never had any ill effects. So I decided to give it a try myself…

That was when my nightmare started…

I softened the earwax with vinegar and baby oil for around 2 days before attempting to do this procedure and it took me 2 tries to flush the wax out. Immediately after the procedure I already noticed the already elevated tone I had was getting louder. The buzzing in my ears is also more severe and piercing. My hearing was also muffled where it felt like I was underwater.

Initially, I said to myself these could be symptoms of the flushing where water got trapped behind the ear drums. After a few days it would surely clear and there would be a day where my hearing would be back to normal.

But that day never came…


My Tinnitus

After 1 week or so, the muffled hearing was slowly coming back but as soon as I was able to hear properly (even though my tinnitus was still here), I noticed something was wrong with my hearing. I am an audiophile. I like listening to vinyl records. When I listen to the usual records I normally listen to, the high frequencies felt distorted especially for sibilance heavy songs. These were the records that I usually listen to and I know how they should sound.

This could not be happening!

The tinnitus was not leaving anytime soon and it stayed at the same loud high-pitched level for almost 2 weeks and the buzzing also continued. Negative thoughts kept rushing into my mind with the realization that this may stay with me for an extended time and I needed to do something about it.

Panic started to kick in as soon as I realized that I may have seriously hurt myself this time around. I kept telling myself how stupid I was going to that concert without ear protection and even stupider for trying to clean my ears at home!

Feeling restless, I decided to go visit the walk-in clinic to see what the doctor has to say about my condition. We talked for a bit and when I mentioned to him I have tinnitus, he immediately prescribed me with Sudafed and said if the Sudafed does not do the trick, I would have to go visit my family doctor and possibly visit an ENT specialist.

The day after I took Sudafed, I woke up feeling a lot better. The tonal tinnitus and the buzzing seemed to have weakened although the distorted hearing is still there. I felt like myself again for the first time in two weeks. I was in an upbeat mood and thought that I have genuinely dodged a bullet…

After a day of relative silent, the tinnitus came back with a vengeance.

High Pitch tonal tinnitus with buzzing that seem to happen inside my head/brain that did not seem to let up a bit during the day. At night, they even increased in intensity and made life miserable. Watching TV was torture during this time because when the volume of the TV was turned up, the tinnitus also turned up to compete with it. I could never find something that could mask this tinnitus I had.

I also noticed this fullness inside my ears that seem to tighten them whenever sounds enter. It eventually became painful to listen to music. I guess this was a form of Hyperacusis that usually accompany tinnitus.

I was also having a hard time concentrating when the tinnitus was blasting away, and I wasn’t sure if it was the tinnitus that caused it. The high-pitched tinnitus at night usually is accompanied by a mild headache which made my life even more unbearable…

In the first month of my onset of tinnitus, I seemed to be able to get half to one relatively quiet day in a string of 4 loud days and the cycle repeats again. The quiet day is great where I can feel like myself again although I can still hear the tinnitus, it seemed to be not ringing inside my head and was separately ringing in both ears if you know what I mean.

The silver lining in all this perhaps was the fact that I could sleep relatively well during this hard time (although I still had to use melatonin for the first month). As I have mentioned before, I have had mild tinnitus for most of my life and that probably prepared me for sleeping under the presence of tinnitus, even though it was way louder than what I used to…

At this point in time, I still had hope that I was going to get back to normal where the tinnitus would fade. Little did I know what kind of a beast I was dealing with…


Dark Places

Months have passed, and the tinnitus has stayed. Life was no fun with tinnitus. I kept believing that it would fade but it kept screaming at me without stopping. How can I live with this for the rest of my life?

Music that once was my biggest escape now became hell because it was painful to even endure the 4-minute duration of an average song. I cannot sustain a healthy conversation with people when I must keep requesting them to repeat what they said. Watching a movie in a cinema which I enjoyed immensely before was now a chore with distorted dialogues and unbearably loud sound which makes for a painful experience. I could choose to sit in a quiet room, but the tinnitus was blasting and I didn’t want to listen to it! There seem to be nothing I can do to make it better. Is my old life gone for good?

Soon, I was drowning in depression with no way out, life was not worth living anymore when I was barely surviving.

That dark thought had crossed my mind numerous times and I kept running scenarios in my mind of what I could do to make it happen. However, further thoughts that my wife would be devastated if something were to happen to me was what pulled me back from further action.

Thankfully, these thoughts were only just thoughts.

Pulling myself away from the doorway of hell didn’t seem to help me a bit with my tinnitus. It seemed to have made me feel even more devastated. The realization of the fact that there was no way out makes my life a living hell.

There was nothing I wanted to do, nowhere I wanted to go and nothing I wanted to try because I knew nothing would change my situation. I was stressed out by the easiest everyday tasks at work and at home and I lash out at my wife daily for no reasons.

They usually say whatever that can’t kill you makes you even stronger, is that true?


How I cope with my Tinnitus

I woke up one day realizing that although I may never be able to get all my old life back, 80% of it may be what I needed to settle for.

I started to go to the movie theaters again to watch movies. I also resumed listening to music although it was not as fun as before, I did it with the realization that one day I may be able to listen to it again without fear. I started to go out and have dinner with friends again and did not fear going into the bar to have a beer. All these activities I did them without wearing earplugs, but I did bring them with me for the odd occasions whenever I felt that my ears were under stress.

I only use earplugs when I absolutely have to like operating the lawnmower and listening to live music in a club.

I even started to go on trips with my wife/friends and discovered that I was able to forget about my tinnitus while I was on vacation. Although not having the time of my life, I at least felt like I was having fun and living my life for once!

Living my life as if tinnitus was not there was a revelation.

Although I still hear it and I was in no way habituated like many other sufferers, I believe I have at least had the condition controlled. Life still sucked living with tinnitus, but I finally have a believe that it will one day get better…


Getting Better

In around the 8 months mark after the onset of my tinnitus. The cycle of 4 days loud, 1 day not as loud had slowly turned into 2 days loud, 2 days medium and 1-2 days quiet and have settled there.

Although there can be relapses where I could get the 4 days loud cycles for a week or two, it eventually settled back to the 221 format.

Today after a year and a half of struggling with this beast, I can say that I am finally getting better. Sometimes I even have 3 good days in a roll!

The hyperacusis also seemed to have settled down and while the pain is still here, it doesn’t stay for as long as before. I also can listen to music without much distortion. Although it is not 100% back to the time before I cleaned my ears, I would say I am enjoying music again!

Lately the day 3s and day 4s in the cycle also feel quieter. Am I imagining things?

I don’t want to get too much ahead of myself but is habituation going to arrive soon?

 

Thanks Hazel for the encouragement. I am hoping that either habituation can finally come or a treatment like the mute button can actually make my tinnitus fade away...

 

Yes!! I still remember that first real going out experience.

I also enjoyed reading your experience. Maybe "enjoy" isn't the right word? I found your experience interesting and enlightening.

 

Thanks Starthrower, I am glad you enjoyed reading my post.

I hope it’s not too long and not overly dramatic. However, I know from personal experience that suffering from tinnitus could turn any sane person into a drama queen...

 

what band?

 

Honeymoon Suite

 

awesome band. just wish these pricks would be more mindful of our ears.

 

I’m glad things have got better for you. I’m sorry you had to go through that torture.

 

I think the journey you described, and arriving at a 221 situation and taking life as liveable even before that - is definitely admirable!

For what it's worth, I have some hearing loss above 12-13k but have found increasing the treble of any audio playback (or using an equalizer) really helps, not only for my enjoyment of the music but I think my brain's audio processing circuits appreciate it.

Good luck sir!

 

Man, your tinnitus sounds exactly like mine. I'm 44 years old, and I believe I always had mild tinnitus too. Mine changed after a loud concert as well. My t follows the same exact pattern as yours. It started to change at the 8 month mark too. I think my quiet days are getting quieter too. I'm about 14 months in now. I hope and pray that it fades in time. Mine also seems to be climbing higher in frequency every month. I'm not sure if this is all normal as I don't have a reference point. I'm hoping a treatment is available to me soon. As I'm sure you can attest the loud days can be pretty loud still. I love for those quiet days that I get every 2 or 3 days.

 

Me also but very funny is opposite than yours. I mean, I started alternatively 2 day good and 2 bed and slowly increasing 3 good and 3 bad. At this point I am 4 good and 4 bed! But changes happen very slowly takes many months even years to change.
Expecting a cure soon I am tired

 

I wish I can have 4 good days in a roll! If yours is already doing that, there’s reason to believe you T will eventually get even better. Just be Patience and you will get better.

 

We should monitor each other’s progress as our tinnitus are so much alike.

Around a month ago, I have experienced a real volume reduction in my tinnitus even on the first two bad days. I would say it went from an 8 to a 6 for around 3 cycles in a roll. For 15 days, I lived an almost normal life where my tinnitus was not bothering me constantly.

Unfortunately, that didn’t last and now I am back to square one where day 1 and 2 are at an 8 level loudness. I still have hope that it will go back lower eventually...

 

My tinnitus was probably about an 8 on my day 1. Sometimes it seems to drop off now as the day progresses. Starts out moderate then climbs in volume then drops off at night. The next day is moderate then usually the next day is mild. Then the cycle repeats all over again. Sometimes I get 2 consecutive mild days.

My tinnitus seems to be climbing higher and higher in frequency every month too.

I also believe I have 2 tones as well. Kind of a quieter white noise undertone mixed with a higher frequency hiss/static over the top of that. If I could get rid of that tone it would be much easier to handle. I'm trying to view the changes in my tinnitus as progress. My ENT believes that it's a sign of healing. I'm hoping in the coming year to have some more improvement. I know the process is slow though. My tinnitus is somatic in that by stretching my jaw I can make the volume increase momentarily. It seems for some reason we have very similar symptoms although no two people are alike.

Maybe we represent a subtype? I'll keep you posted. I hope we both can say we are improving greatly in the coming months.

Hopefully we can get our hands on Lenire soon and turn all our days into mild or no tinnitus days.

 

Are you going to be trying Lenire as soon as it hits the European market? Or wait till it comes to North America?

I also noticed that my tinnitus was slightly more annoying than before in my recent cycle. Probably higher frequency too... Hmm...

 

I'm in NY so probably going to wait for the North American release. Not sure about the logistics of traveling to Ireland and bringing the device back. Looks like I'm going to have to wait awhile. Hopefully they get FDA approval soon. I have to agree that this higher frequency tone is a bit more annoying. Right now I'm enjoying a quiet day. It kind of sounds like a mosquito near my ear. Its the same tone just seems to be more in the background. Outdoors I can barely hear it. It was louder earlier today. Seems like my tinnitus is starting to change throughout the day now. Before it was just the same drone all the time. Tomorrow might be another mild one or it might be back to the dentist's drill sound.

 

I will have to wait and see...

If a Canadian release is not imminent, I will fly over to Ireland and get one. I will wait for positive reviews from early adopters before I go of course, I won't be the first batch of folks to go over there...

 

I'd like fly over and get it too. I'll wait and see what other Americans experienced on their trip, and if they'll need a follow-up as I don't think there are any trained audiologists here yet in the use of the device. I really wish the Susan Shore device would hurry up and hit the market stateside. I believe Neuromod is shooting for an American release this year from an interview I watched. Hopefully that's still on schedule.

 

Where are you?

 

Toronto.

 

Thanks for sharing this @winstona. I believe I will be having a recovery experience like yours and @KMc24. Toughest thing now is that I planned to go to FEQ (been going for a few years now) this year and will be canceling that trip. I love live music but need to err on the side of caution for the first year while my ears heal... some days they ache.

Good luck @winstona.

 

Hi winstona,
I am from Germany, so please excuse my English.
Thanks for your story. In parts, I thought it is mine.
Especially the cycle:
In my case it is a 3-days cycle: 1 day very loud, in the whole head an non maskable / 1 day middle loud and in the ears. / 1 day low and farther away in the ears. and then it begins again...
In the morning when I'm waking up, I know how it will be.
I guess it belongs to something have to do with the unconsciousness.

I hope having more good than bad days in the future and tinnitus will quieten down.

Hope to read more of your success Story.
Thanks,
Matea

 

Hi Matea,

How long have you been suffering from Tinnitus?

 

Just a quick update on my condition...

It's now been 1 year and 9 months since I first experienced this life changing tinnitus.

Lately I have been seeing some changes in my usually predictable cycles of Tinnitus.

In the past, it usually starts with two days of loud Tinnitus (in the head), two days of moderate Tinnitus (In both ears) and 1-2 days of quiet tinnitus (in both ears).

Lately however, the cycles are no longer predictable and yet somewhat positive changes are witnessed.

Now, I noticed that the I could potentially get 1 day of loud tinnitus (in the head) and 2-5 days of moderate tinnitus (In the ears and sometimes one day in the head) before getting 2 days of quiet tinnitus. Some times I even get three days of quiet tinnitus. This used to be a yearly occurrence but now I get the 3 days quiet may be 1-2 times a month.

During the first loud day, I sometimes feel like the Tinnitus is lighter in intensity during the day until around 4-6 PM where it would ramp up to the usual unbearable stuff. But the good thing is it's almost always easier to deal with in the beginning of the day. I am not sure if I am habituating or it's really lowered in volume.

Sometimes I still get 2 loud days but its almost a 50/50 now.

The moderate days can stretch out to 5 days whereas in the past it was almost always 2 days and then followed by quiet days and rinse and repeat.

2 steps forward, 1 step back I guess?

I hope this is a sign that my tinnitus is healing and it is heading to the right direction?

Can someone who has experienced their Tinnitus fade over 2 years confirm what I am seeing is healing? I know it is always best not to be hopeful but...

 

Another year and a half has passed and I would like to provide another update on my condition. This time there is some good news.

I am happy to report that my mild hyperacusis and sound distortion have all been diminished to a point where I can no longer feel them even if I try to. I am back to being able to enjoy music as if this thing never happened. The distortion in sibilance or "s" sounds are nowhere to be found. I shed a tear of joy the day I confirmed this and it was the very first day of true happiness for me in 3 years...

Although my tinnitus is still there, it also has been affecting me less and less. It still comes and goes in a cycle but I seem to be getting more quiet days lately. 3 consecutive quiet days used to be an event that happens only once every 1-2 months but now it's more common. I can sometimes even get 4 consecutive quiet days before the tinnitus ramps up again the next day. My cycle looks like this now:

1 bad day, 1-3 moderate days, 2-4 quiet days.

I also noticed that even during the bad day, my tinnitus volume felt lighter as a whole, not just during the morning hours. Although it still bothers me when it hits and I cannot pretend that it is not there, I can say that I can function like a normal human being during those times.

Having said all that though, I am still not at a point where I can call myself habituated to tinnitus. I think that day will come as my condition continues to improve.

Will it completely fade away? I can't tell but I am hopeful that I can finally live with it now as it continues to improve.

I am finally getting better.

 

This felt good to read.

 

Really happy to hear that. This brings some hope for everyone of us. Just out of the curiosity, do you take any supplements or pharmaceuticals? Or was you improvement completely natural?

 

I used to take Gingko Biloba and Magnesium supplements in the early going with little to no benefits so I decided to completely stop taking them a year or so ago...

I would say it's completely natural.

May be the pandemic helps because I no longer need to commute to work and can sleep more, eat healthier at home and have more opportunities to exercise...