A Life with Tinnitus — How to Live?

I have tried to post some stories about myself on this forum but I have not had much response, so I am trying a different subject.

I have had tinnitus for 20 years and I have a moderate/severe hearing loss in both ears with about 65 dB loss.
At the same time I have suffered from panic attacks and general anxiety for the last 17 years.

As for each Tinnitus sufferer, there are good days and there are bad days. I have not found any pattern to what causes the good or the bad. I just hold on to those good days as my fear of the bad days are always present in the back of my mind.

I want to hear from people in the same situation as mine... How do you cope from day to day with family and work? I literally have no energy left to do any work or actually do things I usually like. Sound has become almost as an enemy to me... Some days I think it would be better if I just went deaf so I didn´t have to strive through life with just 35% hearing. At the same time, I love music, nature sounds and the voice of my children.

But, please, let me know... what do you do to get by, to find joy, to look forward with a hope of a better future when at the same time getting older and the hearing is getting worse.

Thanks!

 

You need to get hearing aids ASAP if you haven't got them. They help with my hearing loss and are able to help with some of the tinnitus.

 

I´ve had hearing aids for 10 years

At first they did help on the T but that effect has slowly passed with time.
I am of course 100% dependent of them, but as you know, they do not give you normal hearing. I am still struggling in everyday life because of the hearing loss and the ever fluctuating T on top. Not having habituated in 20 years does not leave me much hope.

 

Have you tried the new ones out? Check out the Signia/Siemens Primax 7px or Siemens Binax 7bx (older). They may have actually come out with a new model but I am not sure. The Primax came out last year. I loved it. What was great about it was that it amplifies up to 12khz instead of the usual 8khz. That means you can hear more sounds and correct for more loss. I was able to mask more T sounds with ambient noise.

You will however, need to get an extended audiogram which you may have to call around for that. Possibly even go to an audiologist if you can't find a hearing aid place that can do it. There may be other extra bandwidth hearing aids out there.

The Primax had a feature on the smartphone where you can focus the amplification to directly in front of you or 180 degrees in front of you or a full 360. I wish I could have bought it but it was too expensive.

If you are interested though, I was able to try them out for free for 30 days but I'm not sure other hearing aid places would do it.

Nevertheless, call around, prices can be negotiable (except for places like Costco which give great prices but I don't think have the extra bandwith up to 12khz).

I hope one day in the future they can keep increasing the bandwidth even higher.

 

I have been using various types of Phonak ha and currently I have the Phonak Virto Q90 in-ear aids.
Luckily, here in Norway hearing aids are free and I get to test as many as I want to.
I am not sure the maximum bandwidth in theese aids but they do have 20 channels of adjustment.

Edit: I just found out they reach up to 8300Hz

Just tried some Siemens, but I did not like the sound.. this is individual of course.
I might want to try several brands and types before making any decisions.

I would like to se them extend the hearing tests so that more freq. are tested instead of the usual 250 800 1000 and so on. I believe by testing more freq during a hearing test, you could produce hearing aids with much more pin pointed sound to the user.

Things are happening fast in the hearing aid industry, however, hearing aids only help up to a certain level no matter how sophisticated the get.

 

I understand. I didn't particularly care for Resound hearing aids. Its all a personal preference. Widex has one that goes to 10.5khz.

https://uk.widex.pro/en-gb/evidence...excellence/widex-sound-technologies/clearband

 

Today my T just spiked tremendously... I nearly lost my mind and found it hard to cope with the situation.

I am depressed bc I´ve had this thing for 20 years, and suddenly it becomes the center of my attention. I cant get it out of my head, it fluctuates through the day in different frequencies and volume.

I really need some advice on how to get some relief, so if you are a long time sufferer like me, please tell me your best advice to get some relief... I cant take this much longer

 

Still here, but now the anxiety is eating me up inside... I really cant see any future with this. I´m having panic attacks and high levels of anxiety which only makes my T worse. How on earth do I find a way to live with this?

My thoughts are out of control

 

I feel your pain, brother.

Similarly distressed and seemingly unable to get control of myself or this ringing. Agree that this is no life and no way to live. It is merely existing.

 

Thank you Elfin! It does help to not feel invisible on this forum...

Everyone says it gets better with time. It has been 20 years for me... Time is running out

 

Ofcourse I don't know how your T sounds and I know T can be or is horrible, but I also know that your thoughts about T makes T worse. A silly example: when I hear a sound and I think it is is my head, I freak out. When I learn it is outside my head (for example, it is the TV), the sound doesn't really bother me.

Try to stop caring about you T. I know this is easy to say, but it can really help if you just stop listening to it. It is not dangerous.

Since I talked to two people who have T, but just don't care about it and live their live and most of the time don't even hear their T, my attitude towards it really changed. A lot of times I don't hear it, because I just don't listen to it.

Btw, I need to say that my T is not reaaaally loud, but one of the two persons I talked to, had a T which was loud.
Habitation to loud T may be more difficult, but I think in your case, anxiety also plays a part. If you learn to control the anxiety, I really believe that coping with you T will be easier!

Did you ever seek help for your T?

 

I know how you feel. Everyone else seems to be moving on and living and doing things, whilst I am just stuck with fear and terror and depression.

Currently, I am really anxious and seem to be thinking of worse case situations!

What do you do to relax?

 

This is very much how I feel also.
I really cant see any future with this condition, but I have 2 children to live for, but I am just a shadow of how I just to be before this anxiety and depression came. I feel my children notice that I am not very present in everyday life... Walking around like a zombie.

I listen to relaxation tracks on Spotify, watch a movie or go for a drive... It really dont help much, but its better than nothing I guess.

What about you?

 

Than you for your input and taking the time to reply.

My T is very fluctuating and it changes from hour to hour making it almost impossible to "control" in any way. 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.

 

@Makrohn , were you exposed to loud noise? For me some what loud noises like vaccum cleaner, juicer, loud car noises , loud restaurants etc. cases spike.

It took me a long time to figure out that these every day sounds can cause spike. are you staying away from these types of some what loud noises?
does white noise helps you when you have spike?

 

I am sorry that you feel this way! In my country (The Netherlands) you have a couple audiology centre and some psychologists who are specialist in tinnitus. Does this kind of things exist in Norway?

 

Can relate to not being present, to being in your head and for people to say you are like a zombie. Awful business, especially when you are aware that you are doing it!

I like to go for drives or to walk the dog. Whilst these do not mask it, they give me slight relief, more os from the anxiety though, I think. Anxiety makes it worse. Being unable to rest properly and be worried about everything is draining, isnt it?!

 

When I first got it, I went to an ENT specialist and audiologist. They gave me a sound generator and sent me on my way. I have fended for myself since, at great stress to my family and to me.

There were periods of habituation - I went nearly 2 years without really focusing on it as I was really stressed in other areas. It is now back following this spike though. I was anxious before this spike, but this has just thrown petrol all over it, so that my previous coping strategies are no longer adequate!

 

Well, yeah.. at age 15 a fire cracker went of 30 cm from my head and my theory is that this accident caused my T.
I am surrounded by loud noises because of my children so it could be a mix of the noise and my anxiety also having a spike for the last 3-4 months. I have tried white noise but it does not help much.. I found a relaxing tune on Spotify and I use it from time to time. But its hard to combine with family life

We do have som centres that specialise in T and I think I have to contact them because my anxiety has really become the biggest issue here. But the Anxiety is a result of the T and vice versa... its like a dark spiral slowly killing me

I have lived OK with this for the last 20 years... then suddenly it becomes the centre of my attention. Every day, and every hour I think of it and how it affects my life. I have a really loud T, and with a moderate hearing loss on top of that, my alternatives for relief are few.

 

is there any how you can try to wear plugs around your kids and loud noises?

can you take prescrption for clonazepam? Be careful its v v addicting.

i am sure you are getting spike because of loud noises if you try to avoid these loud noises your T might go to baseline. I avoid movies, loud bar etc.

 

Yes, please do that! I really understand what your mean and yes, anxiety makes it so much worse.

Take care, it will get better. At the moment you are just focussed on it and that is one of the reasons it is so bad. I have been there! I started to care less over time and especially when I almost failed university; I just had not the time to listen and worry about my T. And since I talked to those people who just don't care, I am more relaxt too.

 

I could of course try this, but I´m not sure my kids would understand... they are only 2 and 4 yrs old.

I could take clonazepam, but I´m not sure if I dare. I am really afraid of the side effects and of course of getting addicted. But if this continues much longer, I dont have much of a choice

Thank you! But since I´ve had it for 20 years I am really fearful it wont get better.. I have to start getting this anxiety under control because its REALLY out of control right now. Scares the hell out of me

 

But how did you cope for 20 years?



Did you ever meditate? Maybe it will make you more relax!

This may sound very weird, but when I had panic attacks, I would cuddle someone or a teddy bear or something like that and it really gave me some relief!

 

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. Its the worst ever.... A teddy bear, thats cute

 

I really think that that is the key with tinnitus: you just need to stop caring. And it will get better, it really will. You have coped for 20 years with t!! So I don't see why you would not be able to do that again.

 

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

 

Right now it is difficult, but I think you can learn to deal with anxiety!! It is just your thoughts about T.

Again: and search for the help you need! Don't be too hard on yourself, you can do this!!

 

I have a son from 5 years old and a lovely wife...who I love so much. I have S-OCD , PT and T.... I hate it to the bone...but I cannot give up... When I see my son and how much he loves me it is priceless. Even when I suffer I see the good in him. If I did not have him I would not know what I would do.

I have very good days and sometimes very bad. I keep distracted by playing video games and I teach MMA in a great gym with very nice people. My daily work is from IT manager then....to Android/IOS developer now. I do not want the stress of a manager anymore and the pay is the same in our company.

Any empathy from my company is zero to nothing regarding T, but I am not going to fight it. I just want to see my son and wife happy if I cannot anymore and I take some joy out of that. So perhaps when I have T 20 years I still pushing through everyday..... but it is what it is. Even the OCD and the bad anxiety I just take it in and let it be. Fighting it only makes it worse anyway.

 

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

 

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