Newbie with Fluctuating Tinnitus, Need Some Help. Loves <3

[Melike]

Hi everyone;

First of all, I want to send thousands of hugs to every tinnitus sufferer here. Although I am a fairly new sufferer, I've seen the trailer of what kind of a horror movie a life can turn into with such an awful noise.

I am Melike from Istanbul, Turkey. I am 23 years old and I am (or I was..) a 3rd grader international commerce student.

I got my tinnitus, all of a sudden, when I was sitting in a perfectly quiet room and reading my book peacefully (it was the last time apparently). Believe me, it was not one of those ' I tried to listen for it and it was there, then I got mad!' moments. I actually heard noise coming out of nowhere suddenly. I even thought I left the radio on. But it wasn't. I have to say that I was going through multiple stressful events at that time.

You know the rest, the freaking out part etc etc. I've been to various ENTs, my GP and dentist as well. I have tested my hearing and it seems perfectly normal. I have no hearing loss, at least not that I'm aware of. I also had a fMRI and had to pay a fortune to find out what exactly is wrong with my brain. They said there are disorganized activities in my left Heschl Gyrus, coupled with some other disorganizations in some of the non-auditory areas. And some quantity and activity reduction in my cross nerve fibers that are between my left-right nucleus and left-right heschl gyrus'us.


I am now 3 months in and the process has been like that ;


Week 1 – Loudness 8-9/10, high pitch ringing.

Week 2 – Loudness around 6-7 /10

Week 4-5-6 – Still around 5-7 /10

Week 7 – A few hours of almost silence. HIGH HOPES. It is going away probably, huh? 3-4/10 generally.

Week 8 – NAAH. Its gonna be here for a while. 6-7/10.

Week 9-10 – Say hello to hell again. 8-9 /10 ( Combined with a heavy flu)

Week 11 – 12 – I am going crazy. It can be every single number on a 1-10 scale and changes frequency and loudness almost on an hourly basis. Occasional 'near silence' moments again.

Week 13 – Mostly at 3-4/10. But fluctuates very frequently again.


Now here, I need some advices.

Is there anybody who experienced a similar pattern and had his/her Tinnitus settled down to a stable and manageable level ( or may be went away – that would be too good to be true :/ )?

Or any advices how can I habituate to this kind of Tinnitus ? It is like a constant nightmare between joy, peace, hope and hell, darkness and shit. One day I live for the hope of full recovery, one day hope of habituating some day, other day being so tired of this uncertainty and getting nearly suicidal.

I still cannot read or focus any kind of work that requires silence. I had to suspend the semester and I am too afraid to apply for jobs since I dont know what kind of an environment I will be surrounded by. I can't sleep or just stay in quiet places without a masking noise.

PS : I am having r-TMS sessions since the last 8-9 days. Although I knew it was not a trustworthy and certain treatment due to its fixed results, I wanted to give it a try. Even though, I personally talked to at least 6 people whose tinnitus had disappeared or had decreased by 90% with those sessions, it seems like it makes no fucking change for me. (I will be having my last session tomorrow)

PS 2 : Sorry for the long post and please excuse my English. I've been away from school for so long and my English gets rusty quite easily. :/

PS 3: I love all of you.

 

[Henry95]

Hi @Melike, I have had a very similar experience to you in a number of ways. I too had it come out of nowhere as if someone had just switched it on. I was relaxing in bed in the evening and then suddenly there it was. Nearly 2 months later and here I am.

Definitely coping better than at the beginning (it still bugs the shit out of me, but not for every waking moment of the day any more!). I also seem to experience the same fluctuations as you. Literally can be different from hour to hour - usually it ranges from a high pitched ringing which is when it's most irritating and then it falls to a light hissing sound (which is really much more manageable). However there seems to be little I do that changes it, just does it by itself. I think this is fairly common - although others will have to confirm this.

Here's to hoping this utter shit is going to go away some time soon! We're both still at a stage where although it feels like it's been here forever, in reality it hasn't been very long at all and there's every chance that this will go away as suddenly as it came, we just must be patient.

Having just written this post, it makes me realise how much easier it is to give advice to others rather than to yourself..

Stay as positive as you can and just remember none of us are alone in this!

p.s. What range of noises do you get and do they vary from ear to ear?

 

[Melike]

Thanks a lot @Henry95 . It feels so good to know that somebody else is going through nearly the same things I experienced.

I'm trying so hard to stay positive. Even though those rTMS sessions didn't do anything for my auditory cortex, I believe they made tremendous changes for my anxiety issues ( They stimulated the related areas as well, since I was so full of anxiety to see any result as a 'real' result). So I can convince myself to that I will have the exact perfect life again one day. I mean..Most of the time..But the worst part is I have to choose between the options of hoping for a possible full recovery or trying to get 'there' habituating and make a plan to achieve it faster. Choosing the path through habituation and if it goes away, just considering myself SUPER lucky seems more logical to me..Although it hurts a lot.

I get what you did say about how easy is giving advice to others ! I can be a total life coach to others but when it comes to myself I get completely shattered so fucking easily. Maybe thats why we consumed ourselves to the fullest and became so vulnerable to getting Tinnitus.


I have a high pitch( not extremely tho) sound when it is 7-8. I would say it is around 8000hz. Sometimes 10000hz. I hear exactly the same light hissing when it is 1-2-3. Above that it slowly appears in higher frequencies. In addition to that I sometimes hear additional noises like weird hissings, a Morse Code, a light buzzing. But they haven't been constant so far, they come and go :/

And after the first week, I am not sure, my T in my right side went away. I now only hear a noise that feels like centered in my left brain and some occasional hissing in my right. Sometimes when my actual tone is too high, I feel like I hear it in my right as well but that might be a reflection of the secreaming left. Who knows.

 

[InfiniteLoop]

@Melike

My T is somewhat similar to yours. It is very variable in sound and loudness. It tends to cycle with one or two good days, followed by one loud day. It has been quite similar since onset more than 3 years ago, and I will say that it can be anywhere between 1 and 7 in loudness. Sometimes I even experience some minutes of near silence. I agree that is difficult to habituate to such roller coaster of sounds and volume. My frequency is around 10KHz, and I have T only in the left ear. As you describe, when the T is loud it seems that the right ear picks up some of the T sound also. Not sure about cause, around the time of onset I was listening to quite a bit of music, and I even had a fall practicing a yoga handstand hitting the left side of my head against the floor, but I thought that it was a very mild. In any case, I have some hearing loss at frequencies higher than 8KHz in the left ear, and that seems to fit overall T sound region.
If the symptoms are so similar, shouldn't the auditory system damage be similar also? How is your ultra high frequency audiogram? Is there any asymmetry between your good and the T ear?

 

[Melike]

@Melike

My T is somewhat similar to yours. It is very variable in sound and loudness. It tends to cycle with one or two good days, followed by one loud day. It has been quite similar since onset more than 3 years ago, and I will say that it can be anywhere between 1 and 7 in loudness. Sometimes I even experience some minutes of near silence. I agree that is difficult to habituate to such roller coaster of sounds and volume. My frequency is around 10KHz, and I have T only in the left ear. As you describe, when the T is loud it seems that the right ear picks up some of the T sound also. Not sure about cause, around the time of onset I was listening to quite a bit of music, and I even had a fall practicing a yoga handstand hitting the left side of my head against the floor, but I thought that it was a very mild. In any case, I have some hearing loss at frequencies higher than 8KHz in the left ear, and that seems to fit overall T sound region.
If the symptoms are so similar, shouldn't the auditory system damage be similar also? How is your ultra high frequency audiogram? Is there any asymmetry between your good and the T ear?

Actually they didn't test my hearing for ultra high frequencies, not above 8000hz at least. But the fMRI's shows all the hearing losses as far as I know, it just appears as 'partial loss' in some parts of Heschl Gyrus'us activities. Mine showed no loss, only activity reduction and my ENT(a reputable one in my country with lots of experience) believes that I have no hearing loss. I also tested myselsef for higher frequencies, seems like I can hear all the way through 16,000Hz. But since it was only an unprofessinoally done test, I am not quite sure if I have any hearing loss or not. I have no 'irreversible' hearing loss at least I know that.

And yes, I hate this rollercoaster. It is even hard to habituate when it is 4-5, because that seems like the baseline level at that moment and I get used to it quite easily so it quickly becomes my new annoyance level. Then it can suddenly be around 7-8 and here we go, feeling suicidal.

Even if I habituate, I don't want to waste my life feeling so alert about possible threats that can give me possible permanent spikes and avoiding most of the things that can be fun. My boyfriend is a stoner rock vocal and I can't even go to listen for them.

I sometimes try to avoid the maskers and try to be in quiet rooms while trying to get used to it and not be alarmed by it, but it seems like it makes me more sad, depressed and frustrated at the moment. So it ends up with lots of crying. Like I just experienced 20 mins ago. I think habituation doesn't work like that.

 

[InfiniteLoop]

@Melike:

Habituation can not be forced. It is a long process that slowly allow you to care less and be less alert about the T. Passing time is one of the few T therapies that work. I am not a good example of habituation, but there are many cases in the TT forum of people that are able to enjoy life again and think of their T as something even less than an annoyance. Indeed, many of those people do not post again because they do not care about T as a problem anymore.

 

[Michael Leigh]

@Melike
Before your tinnitus did you listen to music through headphones regularly or attend clubs, concerts where loud music is played? If you click on the link below it will take you to my tinnitus article that you might find helpful: Tinnitus, A Personal View.

All the best
Michael

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

 

[Melike]

@Melike:

Habituation can not be forced. It is a long process that slowly allow you to care less and be less alert about the T. Passing time is one of the few T therapies that work. I am not a good example of habituation, but there are many cases in the TT forum of people that are able to enjoy life again and think of their T as something even less than an annoyance. Indeed, many of those people do not post again because they do not care about T as a problem anymore.

Yes, I guess so. I can say that I am %70 back to my normal life. That's a good progress considering the time period I've been with T, I believe. Thanks for the support and I really hope you can make your way through habituation soon. I wish that for everybody.

@Melike
Before your tinnitus did you listen to music through headphones regularly or attend clubs, concerts where loud music is played? If you click on the link below it will take you to my tinnitus article that you might find helpful: Tinnitus, A Personal View.

All the best
Michael

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

Hey Michael ! I am new here but I am well aware that you are one of the most knowledgeable T advisors here and I am glad you try to help every new sufferer here. So, thanks for your reply.

Actually, I've always listened music through headphones but I can't say -regularly-. Sometimes, on my way to school, if I am not busy with something else. And, not very loudly tho. Except for some occasional moments, but in anyway they were not too loud to give my ears a serious damage since I was too lazy to buy me some good quality earphones and most of my friends told me that they can't hear a shit with my earphones, hehe.

Again, I did go to clubs and loud rock concerts but not regularly. 2-3 times a year may be. The last one was 7 months before my onset.

But I believe I was suffering from chronic stress when my T appeared since I was in a strict diet, weightlifting for 4 days, working as a coach and dealing with a seriously heavy school schedule, and oh also, doing lots of housework since I am a little cleaning freak. Perfect conditions for chronically elevated cortisol levels. I am still working on reducing them to a healthy level.

I only made maybe a little more than just browsing through your article, but I am going to read it again with a deeper attention now.

 

[Michael Leigh]

I guess so. I can say that I am %70 back to my normal life

HI @Melike I am pleased to hear that you are making improvement and hope things continue to go well for you.
All the best
Michael

 

[Hopeful1]

Yours is like mine....you should get habituated in a few months
... just do things you enjoy and you will naturally ignore T over the next few months....trust me.

 

[Melike]

Yours is like mine....you should get habituated in a few months
... just do things you enjoy and you will naturally ignore T over the next few months....trust me.

Thanks I think and hope so. I always keep the hope for full recovery in my heart, but don't rely on it to move on. My goal is habituate as fast as possible now. If it goes away, it will be my surprise.

 

[CaRd]

Just don't go near loud places. That was the mistake i made. And it got quite alot worse. With more sounds than ever. And i was just starting to improve ... But it will be allright, don't worry It will even heal in time if you strongly believe it and live and eat healthy. There are lot's of ppl who got rid of this thing. Sometimes it takes a few months. Sometimes it takes more than a year. But keep the hope alive And i would advise to stick to "Successful Stories" section. It will make you feel alot better

 

[Bill Bauer]

The fact that it is changing (and not staying relentlessly at the same level) might be a good thing. Wait a year or two after onset before assuming that you will always have it.

 

[Melike]

Just don't go near loud places. That was the mistake i made. And it got quite alot worse. With more sounds than ever. And i was just starting to improve ... But it will be allright, don't worry It will even heal in time if you strongly believe it and live and eat healthy. There are lot's of ppl who got rid of this thing. Sometimes it takes a few months. Sometimes it takes more than a year. But keep the hope alive And i would advise to stick to "Successful Stories" section. It will make you feel alot better

Oh yes..I will try to avoid loud places. The only problem is my boyfriend's band is about to be a kickass famous stoner band in our country and their music IS.SO.FREAKING.LOUD . I know I have to be careful but I don't want to miss all the fun either. They will be performing in a cool festival this summer and not being able to enjoy it fully makes me quite sad.

The fact that it is changing (and not staying relentlessly at the same level) might be a good thing. Wait a year or two after onset before assuming that you will always have it.

Yes absolutely. I still have hope and my ENT believes it will be gone without anything left behind All I need is just a little patience, like all of the newbies do. By the way I believe the rTMS sessions I had for the past 10ish days made a lot of difference in my T level but it is so soon to draw a conclusion. I will be observing this month and may be post a success story about it. I mean, hopefully.

 

[JurgenG]

Oh yes..I will try to avoid loud places. The only problem is my boyfriend's band is about to be a kickass famous stoner band in our country and their music IS.SO.FREAKING.LOUD . I know I have to be careful but I don't want to miss all the fun either. They will be performing in a cool festival this summer and not being able to enjoy it fully makes me quite sad.

Exactly my problem, well not about a boyfriend or anything, but some of the funnest jobs I do are in loud places.
How are you going to handle it? Earprotection or just not going?[/QUOTE]

 

[Melike]

Exactly my problem, well not about a boyfriend or anything, but some of the funnest jobs I do are in loud places.
How are you going to handle it? Earprotection or just not going?

[/QUOTE]

They had only one show since the onset of my T, I just wore simple earplugs(it was like a foam rubber or something). They did a pretty good job at reducing the volume to a healthy level. Although I take them out during 2 songs WHICH I LIKE A LOT ( I was like, fuck this, I'm gonna enjoy these 2 even if I have to suffer from severe T for the rest of my life), luckily I had no spike afterwards or any kind of problem. But I was so worried all night, I would say I certainly couldn't enjoy it as much as I did before my T Oh, and I stood far away from the stage and the speakers. And I had to watch some girls in front of the stage screaming to my boyfriend. Shit.

Other than that, I sometimes go to pubs to have a couple of beers but that level of loudness never bothered my T anyways. My spikes are always unpredictable and they have no certain reasons.

I can't name any other loud situation I've been to in the past few months. I live a pretty boring life.

 

[jjflyman]

I don't want to miss all the fun either.

Please wear ear plugs if you must go to a concert. If you make it worse/permanent by going out for short term fun it will not be worth it, believe me.

 

[CaRd]

I had no problem with going to semi-loud places. So i dropped my guard ... Now i can't stop blaming myself for my stupidity. Don't risk it, believe me.

 

[Bill Bauer]

Please wear ear plugs if you must go to a concert. If you make it worse/permanent by going out for short term fun it will not be worth it, believe me.

And keep in mind that ear plugs might not be enough protection (as evidenced by countless posts about this on this forum). A lifetime of silence is more fun than a couple of nights attending a concert.

 

[Bill Bauer]

By the way I believe the rTMS sessions I had for the past 10ish days made a lot of difference in my T level

There are very few posts on this site by people who have had rTMS. This is very interesting.

 

[Melike]

I had no problem with going to semi-loud places. So i dropped my guard ... Now i can't stop blaming myself for my stupidity. Don't risk it, believe me.

And keep in mind that ear plugs might not be enough protection (as evidenced by countless posts about this on this forum). A lifetime of silence is more fun than a couple of nights attending a concert.

So you simply recommend -not going- ?

There are very few posts on this site by people who have had rTMS. This is very interesting.

Yeah I can't believe it worked either. It is a bit louder today after 4 days of pure silence + near silence but that might have something to do with my upcoming mensturation which always gave me spikes so far. This time a 4-5 level spike compared to the previous 8-9 ones.

 

[Bill Bauer]

So you simply recommend -not going- ?

If I were you, I would stay away from loud places like concerts for at least two years (while my ears heal). This is certainly my plan.

 

[Melike]

If I were you, I would stay away from loud places like concerts for at least two years (while my ears heal). This is certainly my plan.

But I don't believe there is something wrong with my ears. I strongly believe that my onset was somehow related to my chronic stress and elevated cortisol levels for so long.

https://www.psychologytoday.com/blo...s-can-damage-brain-structure-and-connectivity

But that, of course, doesn't mean I won't protect my ears because I have no noise related trauma in my ears. I already do and I will. But just giving up those fun events makes me depressed at age 23 and I want to believe that there is a sweet spot where you can have fun in loud events and protect your hearing at the same time.

 

[Bill Bauer]

But I don't believe there is something wrong with my ears. I strongly believe that my onset was somehow related to my chronic stress and elevated cortisol levels for so long.

https://www.psychologytoday.com/blo...s-can-damage-brain-structure-and-connectivity

But that, of course, doesn't mean I won't protect my ears because I have no noise related trauma in my ears. I already do and I will. But just giving up those fun events makes me depressed at age 23 and I want to believe that there is a sweet spot where you can have fun in loud events and protect your hearing at the same time.

All I know is that people who have had T, can get T after noise exposure that others don't even notice. Our ears have been compromised.

I think your T could have been caused by the noise you experienced at those concerts. Acoustic trauma is a one time loud noise. Noise-induced T is T due to multiple moderate noise events...

You may want to create a poll for people whose T is due to stress (if you are convinced that yours is due to stress and not noise-induced), and ask them whether they get spikes (temporary or permanent) after noisy events like a concert.

 

[Melike]

All I know is that people who have had T, can get T after noise exposure that others don't even notice. Our ears have been compromised.

I think your T could have been caused by the noise you experienced at those concerts. Acoustic trauma is a one time loud noise. Noise-induced T is T due to multiple moderate noise events...

You may want to create a poll for people whose T is due to stress (if you are convinced that yours is due to stress and not noise-induced), and ask them whether they get spikes (temporary or permanent) after noisy events like a concert.

I don't know. Thats a question I can never answer with %100 certainity. I will never know what caused my T. The last loud event was 7 months ago before the onset as I said. But I did listen loud music through headphones although very rarely. So there is that. Anyways the neural reorganization is done and all I can do is to hope for my brain to rewire itself. I'm taking one day at a time. I will leave the question of attending or not attending loud events for another time period in my near future. Right now, I want to be able to work, read and function normally again.

 

[Rosemerry]

But I don't believe there is something wrong with my ears. I strongly believe that my onset was somehow related to my chronic stress and elevated cortisol levels for so long.

https://www.psychologytoday.com/blo...s-can-damage-brain-structure-and-connectivity

But that, of course, doesn't mean I won't protect my ears because I have no noise related trauma in my ears. I already do and I will. But just giving up those fun events makes me depressed at age 23 and I want to believe that there is a sweet spot where you can have fun in loud events and protect your hearing at the same time.

@Melike Thank you for this link! I actually printed out the article in the embedded link regarding cortisol being public enemy number 1. It talks about one of the things to combat it being loving-kindness meditation which I've started and really helps calm me.

I like the idea of the sweet spot for you. I went to a concert last week - Hall & Oates and also Tears for Fears - you may not have heard of them being so young lol. Anyway, I kinda didn't want to go but my husband was really looking forward to it and we almost never go to concerts. So I wore my Down Beats earplugs and was fine with no residual ringing. Love, Rosemerry

 

[CaRd]

I was convinced that my T had nothing to do with loud music too. Given the fact i always hated loud places and music. Well ... i don't know for sure, but it did get worse. And not the sound itself, which has not changed a bit. Other sounds came along and i can't even hear my old one anymore. It;s there, but very quiet. Now both my ears are tick-ing. Sounds like fun? Nope!

Do as you wish, but use your head That kind of trauma heals veeeeery slowly.

 

[Melike]

@Melike Thank you for this link! I actually printed out the article in the embedded link regarding cortisol being public enemy number 1. It talks about one of the things to combat it being loving-kindness meditation which I've started and really helps calm me.

I like the idea of the sweet spot for you. I went to a concert last week - Hall & Oates and also Tears for Fears - you may not have heard of them being so young lol. Anyway, I kinda didn't want to go but my husband was really looking forward to it and we almost never go to concerts. So I wore my Down Beats earplugs and was fine with no residual ringing. Love, Rosemerry

You're welcome ! It pretty much explains everything, doesn't it? I remember I was trying to lose weight at that time and didnt't even lose 1 pound but gained a few, and I was so bloated the whole month. These are the most common signs of elevated cortisol levels. I'm currently trying to keep it under control to make my brain's job easier (so hopefully it will pay me back with less noticable levels of T :B). I'll try yoga, thai chi and take some Rhodiola extract to begin with.

I didn't know about them but I certainly can say I've heard their music before. That guy really looks like Ewan McGregor. I'm listening 'Maneater' right now :B

By the way is that your cat on the profile picture? My mum's cat is the same breed and they look very much alike! Oh how I miss her..

 

[Melike]

I was convinced that my T had nothing to do with loud music too. Given the fact i always hated loud places and music. Well ... i don't know for sure, but it did get worse. And not the sound itself, which has not changed a bit. Other sounds came along and i can't even hear my old one anymore. It;s there, but very quiet. Now both my ears are tick-ing. Sounds like fun? Nope!

Do as you wish, but use your head That kind of trauma heals veeeeery slowly.

Bye bye my metalhead teenage years. Bye bye the future Foo Fighters and Clutch concerts which I have always wanted to see...And bye to my boyfriend's awesome concerts...The funny thing is, all the members in his band have terrifying amounts of ear problems, one side deafness and partial hear lossess, but none of them has T. Not fair.

 

[CaRd]

I am a rock fan myself also. Although i don't like the loud part, i enjoy that music. Used to listen to some metal too. Now i am afraid to even watch a movie on my PC .... I know your pain, but is it better to hear the ringing in your head?