A Life with Tinnitus — How to Live?

[Sean]

I´m not sure I follow you on this one.
English is not my native language so I might have trouble understanding what you mean.



You are probably right... But my anxiety fogs up my thoughts and makes it one hell of a battle. But I will fight... I just need some help

@Makrohn , spike normally subsides for lot of people. I have had several spike in last 7 years.

Please try to relax and know it will subside. It might take some time ..few days or months but it i it will go down. key thing for me is to avoid loud noises. I have T which was caused my ipod and then fire cracker and my T is very reactive to every day sound .

 

[Makrohn]

@Makrohn , spike normally subsides for lot of people. I have had several spike in last 7 years.

Please try to relax and know it will subside. It might take some time ..few days or months but it i it will go down. key thing for me is to avoid loud noises. I have T which was caused my ipod and then fire cracker and my T is very reactive to every day sound .

Thank you for your kind input Sean!

This spike has been for 2 months... But I do at some points feel some degree of relief in short periods. I have not found any pattern, but it really gives me hope that once my anxiety is under control, the spike will fade. But as said, I´m having a shitty time with this anxiety now.. nothing seems to help

 

[DebInAustralia]

have you watched the back to silence video?

and read the bts thread on here?

the guy featured in the video had suffered with loud t for a long time like you before he managed to habituate using the bts method

 

[RicoS]

Thank you for sharing your story RicoS.
I am in a really bad place right now and I do know it, but I am afraid I will be trapped in this bad place too long.
It has been a really hard 2 months now.

I find inspiration in the fact that you are getting through the days, and like you, I use my children for strength in difficult times like now.

Wish you the best, and may a cure be here very soon

Thanks my friend. To be honest I do not hope for a cure...but more for strength to carry on. Because that is more reasonable that a cure. If my anxiety is low...my OCD is also low and I could care less for my T. But lets face it...volume matter. So if T is loud and I still do not react.... subconscious I still feel uneasy.
With T on a level 2 or 3 it is a walk in the park because I came from 10/10 T. But if my T is 5 or above....it is a more troubled day. But I will not and will never not let it stop doing the things I like. Sure I have no energy sometimes and I need to rest a bit more. But at home they understand. I lost a lot of friends and I do not blame them...I was not fun to be around anyway. I changed from a loving , funny , sporty guy to a somebody who did not want to go out and avoided people.

Forgot to tell I got H to btw hahaha but fuck it ... fuck this whole T and H.... sure I hate it and like many other lucky people who have to search for it with their ears plugged.... NOT ME ... I hear it most of the time anyway but you must not let it this saboteur in you take you down. You have to stay above it.... not thinking in doom and gloom....been there done that...did not help a bit. I had a major depression 2,5 years ago and I am not completely out of it, but there is a fire under me again that will not make me give up.

Do I have hope than T goes away? No I do not...I do not believe in fairy tales ....
Do I feel sorry for myself? Sure..I am only human... but I do feel sorry for myself all the time
Do I feel happy? Sometimes...when I see my son and wife happy.... Or play a cool game or play on the Nintendo Switch with my son. It is not a continues thing anymore but some sparks of happiness
Do I think about deadth? Yes...sometimes..... I know for a fact that I would give my life for my son if it comes to that.... But i would also give that without T I guess. ;-)

This whole T, H, PT , OCD, S-OCD , panic attacks ....it is all shitty to the bone.... but we are stuck with it... we spend money on it .... we try every new drug for it.... doctors do not know a damn thing about it .... So yes you live from day to day until there is a cure or you just do not care anymore or you give up.

But remember one thing.... Not me , not God , not Budha....not the Queen of England or Donald Trump will help you to get up and face life as it is. The only thing that can pick you up is YOU!!! Sure people can motivate you but you have to change your mindset and that is tough...but if it was not tough you did not had to change your mindset anyway because it would be a walk in the park.
We have enough time ahead to give up , but not much time to pick our self up and move forward in life regardless the shit we go through.
Perhaps your T will be gone one day and you get severe eye-floaters (I also had that in the past) it is just as bad as T..... same anxiety and all but I overcame that too....so I can do this too....and if not than not.... There are no rules for life ....there is just life and you have to fill in the pages of life. You have to write your own story and you decide if it is a good book with horrific chapters ....or a bad book with every page the same....
Becides that.... I say this now but when I had 10-10 T I could not even move and my H made sure my own T was hurting my ears...it was insane...but still ...I am here,..... but again.... Monster T is a different ballgame. But we go with what we got !

 

[Sean]

Thank you for your kind input Sean!

This spike has been for 2 months... But I do at some points feel some degree of relief in short periods. I have not found any pattern, but it really gives me hope that once my anxiety is under control, the spike will fade. But as said, I´m having a shitty time with this anxiety now.. nothing seems to help

By the way ,kid screaming close to ears can cause spike ..do you think that was the case ?

 

[Makrohn]

Thanks my friend. To be honest I do not hope for a cure...but more for strength to carry on. Because that is more reasonable that a cure. If my anxiety is low...my OCD is also low and I could care less for my T. But lets face it...volume matter. So if T is loud and I still do not react.... subconscious I still feel uneasy.
With T on a level 2 or 3 it is a walk in the park because I came from 10/10 T. But if my T is 5 or above....it is a more troubled day. But I will not and will never not let it stop doing the things I like. Sure I have no energy sometimes and I need to rest a bit more. But at home they understand. I lost a lot of friends and I do not blame them...I was not fun to be around anyway. I changed from a loving , funny , sporty guy to a somebody who did not want to go out and avoided people.

Forgot to tell I got H to btw hahaha but fuck it ... fuck this whole T and H.... sure I hate it and like many other lucky people who have to search for it with their ears plugged.... NOT ME ... I hear it most of the time anyway but you must not let it this saboteur in you take you down. You have to stay above it.... not thinking in doom and gloom....been there done that...did not help a bit. I had a major depression 2,5 years ago and I am not completely out of it, but there is a fire under me again that will not make me give up.

Do I have hope than T goes away? No I do not...I do not believe in fairy tales ....
Do I feel sorry for myself? Sure..I am only human... but I do feel sorry for myself all the time
Do I feel happy? Sometimes...when I see my son and wife happy.... Or play a cool game or play on the Nintendo Switch with my son. It is not a continues thing anymore but some sparks of happiness
Do I think about deadth? Yes...sometimes..... I know for a fact that I would give my life for my son if it comes to that.... But i would also give that without T I guess. ;-)

This whole T, H, PT , OCD, S-OCD , panic attacks ....it is all shitty to the bone.... but we are stuck with it... we spend money on it .... we try every new drug for it.... doctors do not know a damn thing about it .... So yes you live from day to day until there is a cure or you just do not care anymore or you give up.

But remember one thing.... Not me , not God , not Budha....not the Queen of England or Donald Trump will help you to get up and face life as it is. The only thing that can pick you up is YOU!!! Sure people can motivate you but you have to change your mindset and that is tough...but if it was not tough you did not had to change your mindset anyway because it would be a walk in the park.
We have enough time ahead to give up , but not much time to pick our self up and move forward in life regardless the shit we go through.
Perhaps your T will be gone one day and you get severe eye-floaters (I also had that in the past) it is just as bad as T..... same anxiety and all but I overcame that too....so I can do this too....and if not than not.... There are no rules for life ....there is just life and you have to fill in the pages of life. You have to write your own story and you decide if it is a good book with horrific chapters ....or a bad book with every page the same....
Becides that.... I say this now but when I had 10-10 T I could not even move and my H made sure my own T was hurting my ears...it was insane...but still ...I am here,..... but again.... Monster T is a different ballgame. But we go with what we got !

As for now, I feel I have to hope for a cure within, lets say 10 years or so.
This might change if I succeed in changing my mind and my thoughts about T and I feel like I can live with it again like I did before. But at the same time... having this for 20 years, of course I´ve heard it all along... and of course there has been bad days and times before. But not as long and intrusive as this time. And mixed together will an all-time high anxiety level, I´m living a deadly cocktail right now.

I really do want to make a change.. Change the way I think, and change the way T affects my life. But I feel lonely in all of this. I dont know anyone with hearing loss, T and anxiety... how do I find support? My wife tries to understand and she does well, but she can never fully understand it. And I feel bad for her because I´m walking around like a zombie.

I really appreciate you telling your story my friend. And I really hope there is a cure for both of us in near future.. not because we need it, but because we deserve it

 

[MiaX]

Thank you MiaX, I really appreciate your kind words.
I hope you are right, bc I really want to get through this

You will! Try to find things you enjoy and which relax you, that can help too!

 

[Makrohn]

By the way ,kid screaming close to ears can cause spike ..do you think that was the case ?

I dont think so... I have tracked the past months and I really believe it is due to stress and anxiety the last year. I had very many things coming up like my wedding, school exams, my kids always wanting attention, sleepless nights.. etc. and I also got sick with glue ear on my left side.... just for the record its my right ear giving me a hard time now.

After all of this I started to have long periods of being dizzy, did not eat, lost weight, lost hair, did not sleep well and had many major panic attacks. And then the spike came and have been around almost constant...

Seems like I´m not coming "down" from the stress I suffered or something?
And the anxiety is as mentioned worse than ever... its really really scaring me

 

[MiaX]

I really do want to make a change.. Change the way I think, and change the way T affects my life. But I feel lonely in all of this. I dont know anyone with hearing loss, T and anxiety... how do I find support? My wife tries to understand and she does well, but she can never fully understand it. And I feel bad for her because I´m walking around like a zombie.

It would be nice if you found someone with hearingloss and T who is relaxt with it! Then you will see that it can be different. But I don't really know how to find someone like that.

My dad btw has also T, but he isn't bothered by it, I never talks about it, only if I want to talk about my T.

 

[MiaX]

Take a really deep breath: everything is alright, the world is not failing apart, you have a house, a wife, kids, it is alright, just breath!

I really believe that it is going to be alright (maybe with some help).

 

[Makrohn]

It would be nice if you found someone with hearingloss and T who is relaxt with it! Then you will see that it can be different. But I don't really know how to find someone like that.

My dad btw has also T, but he isn't bothered by it, I never talks about it, only if I want to talk about my T.

Yeah, I really need to find someone who fully understands me.

Haha, sounds like my dad.. He has a severe hearing loss but he NEVER speaks of it or seems affected by it. He is 70 and still working full time. Not much hearing left but he is as happy as ever.. I really envy his attitude. He does not suffer from T though.

 

[MiaX]

Btw: do you have neck problems or something? Because when I have a sore neck, my T is also worse.

 

[MiaX]

Yeah, I really need to find someone who fully understands me.

Haha, sounds like my dad.. He has a severe hearing loss but he NEVER speaks of it or seems affected by it. He is 70 and still working full time. Not much hearing left but he is as happy as ever.. I really envy his attitude. He does not suffer from T though.

Haha, but you see: with a lot of things, it is the attitude that is important!

 

[Makrohn]

Btw: do you have neck problems or something? Because when I have a sore neck, my T is also worse.

Funny you should mention that... I just started seeing a fysiotherapist since I have been feeling dizzy for quite some time and it too got worse during this period. I have never been to one and he told me my neck was mess.... So I got some treatment and he wants to see me on a regularly basis. Maybe it could be something? Have not helped anything so far after 2 treatments, but perhaps I should dear to hope?

 

[MiaX]

Funny you should mention that... I just started seeing a fysiotherapist since I have been feeling dizzy for quite some time and it too got worse during this period. I have never been to one and he told me my neck was mess.... So I got some treatment and he wants to see me on a regularly basis. Maybe it could be something? Have not helped anything so far after 2 treatments, but perhaps I should dear to hope?

I am always afraid I make my T worse if I go to a fysiotherapist, but I think it can help! I have had trigger point therapy (it's like dry needling) and it helped temporary with my T! Maybe I am going back, but right now, I don't really care about my T (but my neck is soo sore, haha).

And btw: do you excercise or something? Because that would be good for your mental health!

 

[Makrohn]

I feel you... When he made my neck snap I felt an intense fear.
But after it feels ok and almost god.. lol

Trigger point sounds interesting, maybe I should check it out. I also hear good things (and bad) about acupuncture.
I have many things left to try since I have not tried much during these years.

But, its a jungle out there when it comes to remedies that might just help.
That being said... I would give much for something that would provide me with at least some relief in volume.

 

[MiaX]

I feel you... When he made my neck snap I felt an intense fear.
But after it feels ok and almost god.. lol

Trigger point sounds interesting, maybe I should check it out. I also hear good things (and bad) about acupuncture.
I have many things left to try since I have not tried much during these years.

But, its a jungle out there when it comes to remedies that might just help.
That being said... I would give much for something that would provide me with at least some relief in volume.

Yep, true. But if you neck really is a mess, it is good to fix that (for your T and your neck itself). My T is related to my neck, shoulders and jaw, so it is possible if you fix these things, your volume will go down. And ofcourse taking care of your mental health will do a lot. For example: I am pretty sure my T would normally be loud right now, because my neck and shoulders really hurt, but because I just don't care and I just don't listen, it doesn't really seem worse.

And do you drink enough water??

 

[Makrohn]

My biggest hope right now is that if I get my anxiety under control, start working out, eating more healthy, sleep more and fixing my neck.. T will be lower. I just have a hard time finding the strength to do the things needed. Dont know where to start in a way..

I drink enough water yes.. after many years being really bad at it, I´m now up in 1 to 1,5 litres per day at least.

 

[MiaX]

My biggest hope right now is that if I get my anxiety under control, start working out, eating more healthy, sleep more and fixing my neck.. T will be lower. I just have a hard time finding the strength to do the things needed. Dont know where to start in a way..

I drink enough water yes.. after many years being really bad at it, I´m now up in 1 to 1,5 litres per day at least.

Mm, yes, I understand what you are saying. Going to a fysiotherapist is already a good start! It will take some time, but with effort, you will feel better soon! And you can always message me!

 

[Sean]

Thank you MiaX, I really appreciate your kind words.
I hope you are right, bc I really want to get through this

@Makrohn , Please do let us know when spike subsdies. I am 100% sure it will.

you have been ok from last 20 years and it doesnt seem you have done any permanent damage.

 

[Makrohn]

@Makrohn , Please do let us know when spike subsdies. I am 100% sure it will.

you have been ok from last 20 years and it doesnt seem you have done any permanent damage.

Yes, I´ll be sure to keep you updated on my situation.
Really appreciate all of you taking your time to respond here.. I felt quite alone at first.

I´ll hang on to the hope that this spike will fade with time

 

[Makrohn]

Just a quick update.

Tonight I have slept about 5h 30m... I woke up with my baseline T but now 1 hour later, my spike is slowly returning.
I´m not sure if I should keep track of this, but I just wanted to take a note so I dont forget that the spike actually disappears at times.

 

[MiaX]

Just a quick update.

Tonight I have slept about 5h 30m... I woke up with my baseline T but now 1 hour later, my spike is slowly returning.
I´m not sure if I should keep track of this, but I just wanted to take a note so I dont forget that the spike actually disappears at times.

Interesting! It can be a good sign!

 

[Elfin]

Good question and I have asked myself the same... It seems like I just did not care (enough).
And all of a sudden, its like the center of everything. Just like.. taken control in some way.

Well, we all have our ways to cope, and I really hope to find something that helps me through this storm I am experiencing right now.

Mate, this literally is my experience. We are experiencing the same feelings, despair and anxiety, and we have both learned to cope with this for periods, but now seem to be in relapse.

This morning was so hard. It is difficult knowing where the tinnitus begins and general anxiety ends. It is a vicious cycle. I hope to break it. I am so stressed now. I am supposed to be getting married on Saturday. I cant concentrate on anything, just this drone in my head. It/this is awful.

 

[Makrohn]

Mate, this literally is my experience. We are experiencing the same feelings, despair and anxiety, and we have both learned to cope with this for periods, but now seem to be in relapse.

This morning was so hard. It is difficult knowing where the tinnitus begins and general anxiety ends. It is a vicious cycle. I hope to break it. I am so stressed now. I am supposed to be getting married on Saturday. I cant concentrate on anything, just this drone in my head. It/this is awful.

Yeah, its really frustrating, cause I feel like before, I did not have to do anything to not care about it. All of a sudden I have to analyse this and that... Of course I should not analyse but it feels like I have to in order to gain some control.

I feel you sooo much on the vicious cycle of anxiety and T.. I have no idea where it ends or where it starts. Sometimes I just feel like the two of them are competing to get my attention, and thats a really scary feeling.. takes over my whole body and existence.

I really hope you find some comfort before Saturday and are able to enjoy the special day.
Wish you the best of luck, and if I do find something that makes my T better, I will not hesitate in posting it here.

 

[Makrohn]

Thing just got worse...

I am at the moment having a spike on top of another spike.
This is just too much, I really dont know how I will get through this when it keeps getting worse.

I am having a real bad time coping with my anxiety and after 3 months of this my body is probably
pretty messed up i guess. My only hope is that if I manage to get the anxiety down for some time,
the T also will lower... but it it just so damn hard

 

[MiaX]

Did this spike happened out of nowhere?

I really wish you would stop caring about the sounds in your head! They are not dangerous, almost everybody hear sounds in silent.

Did you already seek help for you anxiety?

 

[Makrohn]

Did this spike happened out of nowhere?

I really wish you would stop caring about the sounds in your head! They are not dangerous, almost everybody hear sounds in silent.

Did you already seek help for you anxiety?

Yeah, just suddenly appear.
My theory is that my body and mind is just completely exhausted from the last three months.
I´m hoping if I get the anxiety under control, the T will go back to baseline.

Oh, I really wish I would stop caring also. But I hear my sounds over pretty much everything so it is not that easy I´m afraid :/

Yes, I am seeing a psychologist for my anxiety, and we are working on it. Will take som time, and maybe the work we are doing is upsetting my T and anxiety!?

 

[MiaX]

Yeah, just suddenly appear.
My theory is that my body and mind is just completely exhausted from the last three months.
I´m hoping if I get the anxiety under control, the T will go back to baseline.

Oh, I really wish I would stop caring also. But I hear my sounds over pretty much everything so it is not that easy I´m afraid :/

Yes, I am seeing a psychologist for my anxiety, and we are working on it. Will take som time, and maybe the work we are doing is upsetting my T and anxiety!?

It is definitely possible that your body is exhausted!!

I am happy you are seeing a psychologist!!

You're going to be okay, it just take some time

And I really understand that it isn't easy to be careless about your T when you hear it above everything.

I am also having a spike right now (maybe noice related, hope not), but I think I will be fine and so will you

And sometimes when I hear a sound and I think it is in my head, I panick, but when I learn it is outside my head the sound doesn't bother me anymore. That is the way you need to live with your T, you brain needs to learn to filter it (just like the ticking of a clock, the sound of the traffic outside, the sound of the ventilstion system, etc.).

Did you recently visited a ENT? Because he may be able to tell you if you have more hearing loss and if you haven't, maybe you will be more relaxt!

 

[jimH]

I am positive that my anxiety level has some part in this, but I really struggle in getting control of my anxiety. I do not use any AD, and I am scared to try in case I get a reaction or get addicted to them.
I really need some help in dealing with both the anxiety and the Tinnitus, but I dont know how or where.

.

I've had T for more than 30 years. In 2014 I had the worst and longest spike ever (four months). I also developed H during this time. I felt exactly the same way you described your feelings. It's beyond discouragement. I was in a downward spiral of despair. I had to force-feed myself because I had a constant queasy stomach in addition to no appetite. I lost a lot of weight during that time.I could not sleep for more than 2 1/2 hours. It was more like passing out than sleeping. There were times that it was so bad that I could not remain seated. I had to go for a walk or I paced back and forth in the house. I thought it was a permanent change in my T for me. So, my anxiety level went through the roof!


The ONLY thing that pulled me out of it was an AD. PLEASE!...do not completely rule out the use of one! I only needed it for three months. I had no bad side-effects or any problem coming off of it. They can be a life saver. When my anxiety level came down, the H stopped and my T reverted back to its previous level. I could be wrong but I don't believe
that AD's are addictive. Please go and talk to your doctor about it!