One Year with Tinnitus and I Am More Scared Than Ever

[Emmi]

Honestly guys, I am freaking out!!

I am having this now for one year and I feel beyond terrible. I think I am having a panic attack right now, I am just so, so scared that this is staying now for the rest of my life. I am so sad, I don't know how to handle this amount of pain every day. I want to be strong and fight, but I am just so exhausted. This condition is just evil and inhumane. Nobody should have to suffer like this.. I am so, so scared of the future.. what if it will only get worse and worse?? I had very mild T for the first 6 months and then it went downhill.. now I have constant pressure and fullness issues along with a worsening of T, that so far has not subsided to its old level. I really fear bigger, social gatherings with an elevated noise level now.. just cause I am so scared of making it worse. I know I am too concerned about noise levels at the moment.. gosh, I don't know how to handle this forever. I really need some hope!! Desperately.. I want to live my life, but right now this is no life worth living. It's torture there simply is no other word for it. I have tried so many things already and I will continue to do so. But what if all of that won't help? Please is there still hope? Can the situation still improve even after a year?

I used to be a positive person, but this is too much for me. Sorry for this outbreak.. but I think I really need some help and supportive words right now.. Thank you

 

[Phil-O]

Honestly guys, I am freaking out!!

I am having this now for one year and I feel beyond terrible. I think I am having a panic attack right now, I am just so, so scared that this is staying now for the rest of my life. I am so sad, I don't know how to handle this amount of pain every day. I want to be strong and fight, but I am just so exhausted. This condition is just evil and inhumane. Nobody should have to suffer like this.. I am so, so scared of the future.. what if it will only get worse and worse?? I had very mild T for the first 6 months and then it went downhill.. now I have constant pressure and fullness issues along with a worsening of T, that so far has not subsided to its old level. I really fear bigger, social gatherings with an elevated noise level now.. just cause I am so scared of making it worse. I know I am too concerned about noise levels at the moment.. gosh, I don't know how to handle this forever. I really need some hope!! Desperately.. I want to live my life, but right now this is no life worth living. It's torture there simply is no other word for it. I have tried so many things already and I will continue to do so. But what if all of that won't help? Please is there still hope? Can the situation still improve even after a year?

I used to be a positive person, but this is too much for me. Sorry for this outbreak.. but I think I really need some help and supportive words right now.. Thank you

Hi @Emmi
I have had T for about 20 months, so can't advise you too much, but know exactly how you feel. There are many wise experienced people on here who will definitely support you through this journey.
Their advice shows how the brain will filter out and start to neither focus on it, nor see T as a threat. This has helped me lots.
In the meantime check out the success and positivity stories, they certainly show how there's light at the end of the tunnel,
and helped to start me on the path to recovery. Although it takes time, try https://www.tinnitustalk.com/threads/back-to-silence.7172 Best wishes Phil

 

[Jomo]

Sorry to hear this...have you continued to use the general fuzz acrn? It has been helping me and not to jinx myself but i am definitly noticing a decrease in intensity..i am only a little more than 2 months so i am still new to this...all i can tell you is dont let the T win! Thats what i tell myself every day and it keeps motivated to fight on.

 

[Gosia]

I hear you I felt the same way so many times..All I can advise you is..not to think, really..Avoid loud noises, loud places or anything that scares you for now, but don't think about the future. Most probably in time there will be fewer and fewer things you will have to avoid, except for the obviously dangerous ones like clubs or concerts, but one doesn't need that to live a plentiful life. Maybe in the future we'll be saved by a cure or t will simply idsappear ? As long as there is this possibility, there's hope, but most of all, it's better to live day by day and focus on the now. Even if you didn't have t , you couldn't be sure if you won't get any other illness in the future or be a victim of an accident or sth but being afraid of that all the time could drive anybody mad, so we have to protect ourselves by pushing this kind of thoughts away. The sympotms you're having right now can be related to some disorder which can be treated. Maybe some infection? Inflamation? Allergy ? If you treat that, your T will probably go back to baseline which is mild and which makes you quite lucky among the unlucky ones. I'd say see an ENT and try to keep busy during the day as much as possible. Anyway, we have no choice. We have to carry the cross and keep living for other things and people and try to take advantage of life as much as possible.

 

[InfiniteLoop]

@Emmi

Try to stay calm. I am with you, I can't stand it, but we have to live with the enemy with the most friendly terms that we can.

 

[DebInAustralia]

Youre not alone Emmi ..

Big hugs xxx

 

[Emmi]

Thanks guys. I really, really hope that it will settle again.. it's just not true to say volume doesn't matter and it's only perception. At least for me it does. This new level scares me way more than the old one, but the problem is it was another noise incident so I fear it won't go back to the old baseline.. I did not have ear fullness and pressure issues before and also I had a short incident of H. I know that my situation still could be way worse, even though I do suffer greatly with this one already.. but knowing that your current hell could be a hell of a complete other dimension if you are not careful is just no perspective for the future. Not only that this is likely to stay for the rest. of. your. life. but also the threat of constantly worsening it.. I don't know how I am supposed to see a future with this?? I try my best to change my situation for the better and I fight for my father, because he is fighting so much for me. I have to continue.. but it's so hard when you just constantly feel tortured and rationally have come to the conclusion that there just is no future. If it would only be about me I would likely end this suffering, cause I just don't see any sense in living with such an inhumane condition. Again, TORTURE. Sorry for the vent.. it just makes me so angry, that we have to suffer like this and nobody is able to help or even see the seriousness of this.

@Jomo
I have used generalfuzz only for a short period, cause I felt it was not really helping me. But I do have a hard time matching the frequency.. so maybe that's the problem why I feel it does not help. But it's really good that it helps you! I am happy about everyone who can find some peace with this.

@Gosia
True, I could check my allergies.. that's on my list for a long time already. And yes day by day. Otherwise it does not work at all.. I have a hard time not thinking further though.. would you say you are still happy or enjoy life?

@Phil-O
thanks for your advice with BTS... I tried it also already, but maybe I did not stick long enough with it either. Did you get some quieter periods with it?

Thanks @DebInAustralia & @InfiniteLoop for your words.. I see you have T now for quite a while.. did it get at least a bit better after some time.. you feel you still enjoy life? Or will we always just hate it?

 

[volsung37]

The only thing that helps me is getting out into nature by the sea or in a forest. Tinnitus thrives on stress. I believe that it is the sound of our nervous system on overdrive. The more you can calm yourself the more it will recede. However the converse is also true. The more you stress and worry the louder it will become. I believe most of us will have this condition for life. However I have noticed that although it is damn loud my brain doesn't see it as a threat anymore so it just files it under nuisance.

 

[Fangen]

Hello Emmi!

I am almost at my full year too, just another two weeks and we have gone a full year. I had that realization of "what if I am going to live like this for the rest of my life?" and had some kind of breakdown the first weeks. I felt awful and had panic attacks all the time and I couldn't sleep due to the noise and I just wanted to cover my ears to make it stop (and realized I could never shut it out and that cause more anxiety). I
Now that time have passed (with lots of up and downs) I guess I am starting to learn the pattern of the T, things I used to be scared about but had exposure to against my will and realized it wasn't dangerous at all. I am still having issues with going to new places or social gatherings as I don't know how loud it can be, but I carry plugs with me just in case it is uncomfortable loud. I think it is a part of recovery to face obstacles like this, and we have good days between. I know it is hard right now, but don't think about the future now. You live in the present and you can do what you can do (for T and for your overall life) right now to get better, protect your ears, do what you love and live life, and then the future will come. If we worry to much about the far distant future, we'll always feel bad as we are unable to do anything about it, but we can all make small changes TODAY.

So don't worry, try to do things that you like to take your mind of it and I hope you feel better soon!

 

[Jomo]

@Emmi

I really suggest you stick to it. You dont have to have the precise sound...as long as you experience residual inhibition you should continue with it. Listen to it when you have at least an hour to do so...i listen almost all day and even when i can still hear my T...i really feel like it is working. If your T changes you have to change the therapy so keep that in mind.

 

[Dominic1955]

@Emmi , did you have ant ENT evaluation?

 

[snow47]

We don't know about future. Maybe next year I accident and I don't be live. So I think we must live in present time.

 

[Marie79]

Not only that this is likely to stay for the rest. of. your. life. but also the threat of constantly worsening it.

Maybe a TINY bit of reassurance is that Dr. Harrison Lin in Irvine is working on a real cure with an electric device. I know you are suffering but I wanted to give you a LITTLE hope. I have seen him personally and he has tinnitus and is doing clinical research now.

 

[william adams]

I sure hope that Marie is right and someone comes out with a cure in the near future for even for people that habituate I think we all get times when T becomes intrusive and gets under your skin..Last night woke up and T was really loud probably the cappucino I had earlier in the day. I no its difficult sometimes but as time passes you will improve believe me. When I look back it seems every month you get a little better so hang in there you are going to get better with time and try to focus on other things and the T will go into the background... Try to keep yourself calm as possible for that is a big factor in getting well and keep busy..What helps me most is exercise, gym, yoga, tai chi any outdoor sports is good too. God bless you will be alright......

 

[stophiss]

Emmi,
Do you have access to medication like benzo's to bring you down a bit when your T is raging? Michael Leigh I believe has a go to drug when his T spikes. Also consider getting on a longer term anti depressant.

Many of us feel your despair at times. I have these episodes as well as probably most here when our T spikes for no apparent reason.

My best advice is...
- experiment with med's so you can get through the bad times. I personally take an Ativan to bring me down off the ledge when my anxiety spikes in sequence with my T spiking.
- have faith that a therapy will be available which will help each of us either surgery or installing a new brain.
- live your life with doing what you love to do the most. Loud social engagements are over rated. Seek romantic quiet time with someone special.
- and here is one that may surprise you a bit. Help others in need. Reach out and help others and you will feel better.
One of the most important members here does that every day and few have suffered more than Michael Leigh. He is such a good person and there are also a great many others here that try to help those in need as well. An irony is...tinnitus humbles each of us and gives us a much greater capacity for empathy for others in need. No shortage of suffering in the world. I am mostly the comic relief...how I cope with this insidious condition we have little control over. I never knew anything about this like most until one day it showed up. I always thought ringing in the ears was for somebody else until it was me.
This is what I do or make a point to. Sure I still engage in the selfish hedonist stuff I like to do but I also make a point to help others. Helping others provides more well being than anything.
'Stepping outside ourselves and outside T which should never define us' to help others may help you as well as each of us have talents we can share.

Group hug.

 

[Gosia]

@Emmi , I can't say I'm happy..but I can enjoy life. Especially before my recent spike, which I still hope to see settle, I really lived quite normally and since T, I had two most awsome travels in life , to Sicily and Crete. I'm not happy for many other reasons though, so ..but t definitely changed me beyond imagination. I'm pissed with fate for that but after a while we have no choice but to come to terms with what life brings - we've been screwed in that way. Other people are in other ways..I'm afraid we have to give up the importance of the future. In a way it's liberating. I'm myself going mad sometimes not knowing which of my problems is worth worrying more. I have so many right now I don't have much time worrying about what's to come. At least I'm still youn, I can walk, I have sb in my life , I have my two cats - these are my joys. But no, I can't say I'm happy. Then again, who said we have to be happy to enjoy living ? Or else : nobody promised we'll have a happy life, but we can still have good moments at least.. I try to do as many things as possible that bring me at least a little joy in everyday pain. What can still happen to us is so terryifying that not thinking about it is a natural defense mechanism.
But more optimistically, as I wrote before - I guess I believe that one day this hell will stop or dimish to very insignificant level. Either by itself or thanks to some treatment. Just by curiosity - what have you tried already to diminish it ? When it come to allergies, welcome to the club. It must be a few years I'm trying to go and do those bloody tests, only here there are so few specialist that each time I called to make an appointment they offered me a date 6 monnhts later which I had to cancel twice because I had sth more important on that day. It may have sth to do with tinnitus but I guess I believe that less and less. I don't have any fullness in my ears though. If you feel some, that might be due to swallen eustachian tubes which might be due to allergies.

 

[Julien87]

I am so, so scared of the future.. what if it will only get worse and worse?

What if it goes away by itself? What if a cure is available in 5 years?
It's good to keep the different possible outcomes in mind. Keep hope

 

[DebInAustralia]

Maybe a TINY bit of reassurance is that Dr. Harrison Lin in Irvine is working on a real cure with an electric device. I know you are suffering but I wanted to give you a LITTLE hope. I have seen him personally and he has tinnitus and is doing clinical research now.

An electric chair?

 

[MikeL1972]

@Emmi

How is your hearing? If you have some high frequency loss and the ringing is really irking you, perhaps you should consider going to a hearing aid specialist to see if it will mask the ringing? I know hearing aids are super expensive, but if will improve the quality of life for you, perhaps worth a try? Your health insurance plan may even assist you in paying for one if it will help you out.

I've had tinnitus since March 2016 and I just try not to think about it. My ear is ringing now, but I don't care; I try not to focus on it. I am trying to take one day a time and not look out years from now. Here is how I look at it: countless millions of people have this and they go on with their lives. Even on this site you have physicians with tinnitus so we are definitely not alone!

One thing that I can offer as a suggestion is to get as much sleep as you can. Go to bed earlier if you can and rest both your body and mind. It makes such a difference and helps you focus on the day at hand! Just stay strong and try not to dwell on the negative in as much as the positive. Your outlook really makes a difference!

 

[Marie79]

An electric chair?

No like something they will implant in the ear that gives off electricity

 

[DebInAustralia]

No like something they will implant in the ear that gives off electricity

Did Dr Lin elaborate on his 'electrical device' Marie?

 

[GregCA]

Did Dr Lin elaborate on his 'electrical device' Marie?

I think it may be what was described in the 7/12 ATA webinar (I don't know if it's available to non-members), which featured a doctor from Irvine too, who was talking about electrical stimulation with electrodes placed on the forehead and the back of the ear, and then in a different location, much closer to the cochlea (I believe one electrode was actually implanted in the middle ear, right next to the cochlea, and the other was external, by the ear drum). This placement gave the best result (fewer side effects), if my memory serves well.
The results were very encouraging, especially because the residual inhibition period was lasting quite long.

 

[stophiss]

No like something they will implant in the ear that gives off electricity

Marie..do you know if this device is being tested currently? If so, animals or humans?

 

[stophiss]

I think it may be what was described in the 7/12 ATA webinar (I don't know if it's available to non-members), which featured a doctor from Irvine too, who was talking about electrical stimulation with electrodes placed on the forehead and the back of the ear, and then in a different location, much closer to the cochlea (I believe one electrode was actually implanted in the middle ear, right next to the cochlea, and the other was external, by the ear drum). This placement gave the best result (fewer side effects), if my memory serves well.
The results were very encouraging, especially because the residual inhibition period was lasting quite long.

Any word on what the side effects are Greg? When you say residual inhibition period...are you saying this technique is a method of masking tinnitus or it stops tinnitus but for a limited time duration?

 

[Emmi]

Thanks for your messages.. it's a bit better now again, guess I just really freaked out when I realized I am having this for a year now and by every definition now it's definitely chronic. So yeah.. it's just hard to see a future with this. But I try to fight as much as I can.

Maybe a TINY bit of reassurance is that Dr. Harrison Lin in Irvine is working on a real cure with an electric device. I know you are suffering but I wanted to give you a LITTLE hope. I have seen him personally and he has tinnitus and is doing clinical research now.

@Marie79 thanks, that in deed gives me a little hope! Do you know if it goes in the direction of Direct Current Stimulation?

@stophiss
wise words. It for sure opens your eyes for all the suffering around you. Especially with young age you are used to health, so you are taking it for granted. I didn't want to go the benzo route so far.. my doctor was also very hesitant about it.. but lately I am thinking of trying it.

@Gosia
true, nobody promised us to lead a happy life. And sometimes things just happen and fate can be a b****. And probably it's wiser to focus on the things you can still do.. I know my focus is way too much on my restrictions atm. Oh wow, I tried quite some already.. steroids, acupuncture, osteopathy, neuraltherapy, various supplements, white noise generators, keto diet, CBD oil (...) nothing helped so far. In case of a success I would definitely report it here! But no nothing..

@Julien87
true you never know.. but still I am scared, cause in the past it didn't exactly get better. But you're right nobody can predict the future.

@MikeL1972
I did a hearing test, but came out normal (I see a pattern here ).. but I might have some hearing loss above 16 khz, not sure if a hearing aid would help with this though?! Sleep is very important, I noticed that, too!

and thanks to all the others!

 

[GregCA]

Any word on what the side effects are Greg? When you say residual inhibition period...are you saying this technique is a method of masking tinnitus or it stops tinnitus but for a limited time duration?

I don't recall the side effects with clarity, but I think it was along the lines of headache, nausea, vertigo, especially for the use case where the electrodes were far apart (i.e. one on the forehead and one by the ear), as there was a lot of "area affected" between the two electrodes. That's one of the reasons they used electrodes that were much closer the following time around: one by the cochlea (inserted surgically), and one by the ear drum (external).
Turning on the jamming via the electrode created a masking effect: at first the person hears both the T and the "jammer signal", then the person doesn't hear the T anymore (I don't remember if the person still hears the "jammer"), and after 10 minutes of stimulation, when you take away the jammer, the T was still gone for quite a long time (I recall something like hours, so very promising). Silence achieved. Very interesting I thought.

 

[Gosia]

@Emmi, and I agree with you that loudness of T matters. Like hell. Mine is a little quiter today and I already feel much better, but then again, I know that tomorrow it may flare up again. Funny this advice we always get first - ''have a lot of sleep'', while sleep is what T disrupts the most. Don't start with benzos..Anyway you will have to stop soon, it's not a long term solution. Better not mess up with those brains of ours even more. Maybe read more postitive stories : having T for a year doesn't mean it will never go away. There are case of it passing completely even after a few years .

 

[stophiss]

I don't recall the side effects with clarity, but I think it was along the lines of headache, nausea, vertigo, especially for the use case where the electrodes were far apart (i.e. one on the forehead and one by the ear), as there was a lot of "area affected" between the two electrodes. That's one of the reasons they used electrodes that were much closer the following time around: one by the cochlea (inserted surgically), and one by the ear drum (external).
Turning on the jamming via the electrode created a masking effect: at first the person hears both the T and the "jammer signal", then the person doesn't hear the T anymore (I don't remember if the person still hears the "jammer"), and after 10 minutes of stimulation, when you take away the jammer, the T was still gone for quite a long time (I recall something like hours, so very promising). Silence achieved. Very interesting I thought.

Interesting indeed and thanks for sharing that.
Cheers.

 

[stophiss]

Thanks for your messages.. it's a bit better now again, guess I just really freaked out when I realized I am having this for a year now and by every definition now it's definitely chronic. So yeah.. it's just hard to see a future with this. But I try to fight as much as I can.



@Marie79 thanks, that in deed gives me a little hope! Do you know if it goes in the direction of Direct Current Stimulation?

@stophiss
wise words. It for sure opens your eyes for all the suffering around you. Especially with young age you are used to health, so you are taking it for granted. I didn't want to go the benzo route so far.. my doctor was also very hesitant about it.. but lately I am thinking of trying it.

@Gosia
true, nobody promised us to lead a happy life. And sometimes things just happen and fate can be a b****. And probably it's wiser to focus on the things you can still do.. I know my focus is way too much on my restrictions atm. Oh wow, I tried quite some already.. steroids, acupuncture, osteopathy, neuraltherapy, various supplements, white noise generators, keto diet, CBD oil (...) nothing helped so far. In case of a success I would definitely report it here! But no nothing..

@Julien87
true you never know.. but still I am scared, cause in the past it didn't exactly get better. But you're right nobody can predict the future.

@MikeL1972
I did a hearing test, but came out normal (I see a pattern here ).. but I might have some hearing loss above 16 khz, not sure if a hearing aid would help with this though?! Sleep is very important, I noticed that, too!

and thanks to all the others!

Emmi,
Ativan is my security blanket that my mom took away when I was a kid . I can't remember which she took away first, my security blanket or my teddy bear. Both were traumatizing and may even have been the beginning of my T.

Seriously, having something in the medicine cabinet on that very rare occasion is sure appreciated. For me, it takes the edge off. I virtually never need it but sure comes in handy when I do.

A steady diet of benzos is of course bad. Just like a steady diet of asprin or Ibuprofen etc.

Hope you feel better. For most of us when our T spikes we freak out a bit. My T spiking sometimes doesn't bother me in the least because I always expect it to go down and it does. But sometimes my T like many here makes me feel a bit desperate and I presume this may even be due to change in brain chemistry I don't realize and why sometimes I react more unfavorably to a change in my T which goes up and down without explanation.

Feel better.

 

[Marie79]

Marie..do you know if this device is being tested currently? If so, animals or humans?

Dr. Harrison told me humans. You can look him up. He is a doctor in Irvine, CA: Harrison Lim

@Marie79 thanks, that in deed gives me a little hope! Do you know if it goes in the direction of Direct Current Stimulation?

That part I'm sorry I don't know. For me my T isn't that bad to where I was going to pursue the clinical study. He did give me hope though in case it got really bad for me and for others.