Oldies sometimes make us newbies feel worse!

Why do i read time and time again, Tinnitus since ... 1990, 2001, 2002, etc, etc, this just makes my heart sink, as all i ever hear is you will habituate, you'll start forgetting about it, your brain will get bored of hearing it, and i think halleluya!! time will help me so just be patient ... then someone post's i cant take this anymore!! and i automatically think OH!!! must be a newbie ... NO ! NO! NO! it's someone who has had it for donkeys years and is still posting things that just send me in to a whirlwind of what my future holds ... surely if after many, many years of Tinnitus you would have ended it all knowing that this shit is here with me for life ... NO ONE can endure this life of hell for 10, 20, 30, 40 yrs without habituation ... i don't care what you say it is not possible to want to be alive with this screaming in your head 24 7 for over 10 yrs plus ... so oldies think before you post, some of us are just new to this crap and look up to you oldies for hope and support ...

 

Do you want a support? Than read thread about Retigabine. That is support.

 

What the heck is Retigabine, please explain to me, as i refuse to read one more story about how this can take my life !!! Thank you in advance ...

 

In the treatments section there is a thread about an epilepsy drug called Retigabine that works similar to Autifony (which is a drug for tinnitus in the trial phase). Three to four people haven taken that and their T went down. Some more people want to start taking it once they have it. So maybe we have something here which gives us hope. I would not be overly optimistic (the more optimistic, the more disappointed later) but maybe we are lucky.

 

Looks encouraging.. Were not all far off from the noise ending.. No reason for anyone to think your with this for life. Stay hopeful, positive, and habuitation will happen to everyone. Some might take longer but youl get there. And autifonys on a good ass track and now with reg... Just excited to see more people try out the drug especially those that are chronic and see if it helps, and if it does there shouldnt be any reason it wont help the majority of us and then we can even wait for autifony and be more excited. Ofcorse theres a chance it wont help but looks good so far!

 

There are many people who are able to cope well with problems and others who are not able to deal with them. Obviously on support boards and groups you will find people who for whatever reason do not cope with them so well. That does not mean that it is possible to cope with problemss. I believe thats also the reason why some people become disappointed or bitter when old and others remain a cheerful attitude although both may have endured the same amount of pain.

 

Carol... I'm one of the "oldies", and yeah I have a rather 'exceptional' and multi-layered T story. However, there are a number of ways to interpret what one could see as a fairly disastrous affair with this affliction.

- One way would be to indeed feel discouraged that one can get T four times with increasing volumes each time.

- Another way would be to see that I habituated very successfully twice, and with difficulty a third time because I had added hyperacusis. But I did get my life back enough to travel widely and even dance Gangnam Style on stage (see "Positivity Thread" for the video proof) with no earplugs in! Took a while but I got there.

- Yeah this fourth time is hard and is proving difficult, but I am in better shape psychologically now (even with another thing in a long list of things pulling me down - infected root canal molar just removed, lip stitched up, etc. feeling like hell yet still have a divorce finance meeting tomorrow...Sigh!) than I was a year ago. That is progress. For sure the T and H restrict my life a great deal, but read most of my posts on this site, and the majority I hope, are not pools of depression. I hope that's true but I could be delusional.

- I do hear you though, that the reality of what can happen with T, and successive more T, is not a happy thought. Yes it could bring anyone down. But look at it this way...It is fact! It can happen! it happened to me! Perhaps by sharing that it will give pause to some who I think are a bit 'cavalier' about assuming that once habituated it's all over and go riding off into the sunset, ready to hitch their horse at a disco, etc.

- Yes, sometimes this suffering feels unbearable, but I AM STILL HERE! That too is a statement.

- Also the vast majority of T sufferers are NOT going to be as complex and weird as my case, and those: "You will get through this and more or less forget about it!" statements are true. And hey, make no mistake, I get tired of hearing those without typing a "Yes, but...". However I don't for the most part, unless I fell it is really warranted within that discussion.

- We are here to share and indeed I felt hesitant about replying and for a moment wondered if I should quit posting if it were only bumming people out. I quickly realized though that I feel it would be a disservice to hold back and not share my truths and reality despite them being 'not so rosy', so long as I continue to try and do so in a balanced way. Truth is truth. It's mine. People must make their own decisions about how to accept or reject that.

- Finally, you do need to look at the Retigabine thread, it's getting to be pretty heady stuff! It's too soon to say yet, but this is way important and a real validation for Autifony as well.

Ha, ha...Yeah, as a footnote, I do still have my POLST form as I understand where you are coming from and why all to well. Suffering does suck. That's why I hope I go out with some boxing gloves on to beat the hell out of whoever put it into the Grand Design!!!

Take gentle care Carol... Best, Zimichael

 

I don't know...I'm a newbie as well, but I don't think it's the oldies responsibility to filter what they feel and say for the benefit of us. They are here for the same reason as we are. They need to vent, and they also need the support from others just like you and I.

In my opinion telling others to "think before you post" is just not fair.

I personally think that there should be no timeline for sharing feelings, and everyone here should have free range to say what they want...even if it's not what you want hear.

 

Carol first off, im sorry not doing well at the moment. I dont think it makes a difference how long someone has had T for, the people you should look to hope and advice from are ones who have done it. No matter how long they have had t. The people who have had it for years and are still suffering are on this board because they are still suffering, and looking for support. Its not fare for us not to ask them to post, they may need as much or even more help then newbies. As for you, Carol if you have not been making improvements maybe its time to look for some help, from someone who has a lot of experience and a good track record of helping people with T. Wether it be some sort of CBT or TRT or whatever else. Sometimes its not enough to wait and hope time heals us. On a brighter note one that i hope will give you confidence my father has had T since before i was born, and he is great, my uncles has had it for around 10 years, and my doctor has had it for a while. And the people on here are a small minority of all T sufferers, many are doing great, and don't come to support boards. The people here tend to be ones looking for support anyway hope things start to get better soon. Also look in the retigbine thread, it seems a cure or treatment will come soon, but again i think you need to address things that something like trt or cbt will help you with, mainly distorted thoughts. Take care .

 

The only part that scares me about the "oldies" posting is that I see a lot of them saying that over time their T has gradually gotten worse (in some cases so bad that people have had to quit their job and withdraw from all society) and it scares me to think about that. I'm only 20 (turning 21 in two days) and I have so many years ahead of me and I can't help but to think that that is a lot of time for my T to get worse and a lot of time for me to deal with this monster. I'm a very social person who thrives on company and friendship and I have seen at least three people on here who have testified that their T got so bad that they had to just give up everything and never talk to anyone and suffer alone. Honestly, if that's what happens to me I'd rather just not live because there would be no point.

 

I think it is wrong to say "habituation will happen to everyone", or stuff like that. How long do i have to wait for? How do you know everyone? Isnt some 15 years with tinnitus enough to habituate? I just woke up and realized my ears are ringing. I find this situation over and over again every single day.

And yes, T got worse last year. A lot worse than i ever could have imagined (trying to habituate to Meniere´s disease, too, causing T to go berserk sometimes. (noise so loud you cannot hear what the other person is saying). I like to think i am a positive guy, but hearing "you´ll learn to cope with it" makes me angry and sad sometimes. I´m sorry but it does.

it is possible to keep things going with diseases, tinnitus, anything. Quality of life is another thing.

 

Just as well you could think that if according to statistics around 1/4 of people for example in the UK have cancer you will get it to. or that if the woman next door is not able to get pregnant you won't too or if II WW broke out the III will too. There is no point in thinking like that. Instead of worrying about the future live in this moment and simply take preventive methods such as plugs to avoid it getting louder. Also Im quite sure that if we get older and endure more we will see that life goes on anyway, no matter what happens.

 

For a start as far as forgetting you have T , no matter how long you have had it for, is not true, you don't ever forget that you have T, there just comes a time where you just accept that you have T and try to lead a normal as life as you possibly can!
Habituation does not mean that your brain will get bored with it and fade it out you just get to a point where you don't worry about it as much.
People on this forum can give you all the support in the world but in the end we can't help you habituate, that is up to you and that will take time.
I was sweet for 24 years with my T, I was used to the noise and it didn't bother me that much, I was still aware of it and could hear it most of the time but I just got used to hearing it, but I still went through what you are going through now for at least 6 months.
I am suffering from a chemical imbalance in my brain, (depression) that is most of the reason why my T has changed in volume and pitch and now is more bothersome than it used to be but I have found over the last two weeks I am becoming less emotional about it and it is becoming a little less bothersome to me.
The only people I believe who can really forget that they have T are the ones who have had it since childhood like my wife but even she says that sometimes it can really bother her as well and even she has noticed that the older she gets the worse her T seems to get.
Your best bet is to not worry about what your T is going to do in the future and just worry about the now, what you do from now on will determine if your T gets louder in the future or not like Stina said ear plugs and vigilance always!

Rich

 

It is normal to worry about the future when T is new and that you are still in that dark tunnel not seeing the light yet. We are just human. The important thing is not let that worry to become all overwhelming that it becomes a cognitive distortion - catastrophic thinking about the future. There is a fine line between being normal and otherwise. That is why I have been saying, to not live in the future but focus on the very moment in front of you, which you can control and can make it the best moment.

One of the mistakes I made as a newbie to T back then was doing just that, trying to project the future when my body & brain were at their worst shape, as if my perception about T would be always traumatic and fearful. I often suggested to myself that there was no way I can live like that for the rest of my life. The more I thought like that, and with T not fading, the worse I felt about my chance of surviving that.

The mistake I made was that I thought my perception about T would never change. How wrong I was. I paid the price. Thinking back, if I had known my brain would not give a dime about T high or low in a few years, all those immense sufferings at the start would have been spared. How my brain could have hardened to this dog whistle, that I could learn to accept this reality and now peacefully co-exist with this beast without letting it ruin my sanity, I don't really know how except Time and making a conscious effort to live life positively. It is a progressive thing.

If I can suggest an approach, it is that we don't need to worry about our own future because we see some oldies still seem struggling. Everybody is different. T can be different. Circumstances such as health condition, character temperament, upbringing, stress level, physiology, mental approach etc. can affect how we cope with T. The oldies' challenge with T is real and they should be just as free to talk or rant about it like others. But to suggest to yourself that you will be struggling just like them in the future is not logical nor realistic. For all we know, there are millions of people who are oldies with T and their T is no longer an issue. Perhaps focus on the positive that you have a high chance to be among those too in the future. My 2 cents.

 

Thank you for your reply it has cleared a lot of questions i had about habituation, i'm still trying to come to terms with this thing, and i'm struggling with the thought that this is for life, thanks again.

 

Believe me Carol you have got T at a better time than when I got it, I had no help whatsoever and was told to just live with it with next to no information at all, and there is allot of positive research going on at the moment with a cure now a very real possibility, you may like to look at these threads...
https://www.tinnitustalk.com/thread...-treatment-of-hearing-loss-and-tinnitus.1607/
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga.5074/

Should make you feel a little more positive about the future.

Best of luck Rich

 

Thank you so much, really appreciated .

 

Thank you Zimichael, i really appreciate your help and i meant no harm with my op i guess i'm just just looking for assurance that i won't be still suffering in 10 20 yrs plus, the thought of it scares me senseless . You are a very kind person and i have read many of your post's and have felt better for doing so, please never stop posting as you do help so many of us in many different ways, and yes you are still here fighting the good fight and for that i am very grateful to you, thanks again and have a blessed day.

 

Billie thank you so much for your words of encouragement, i really have taken on board what you have said !!! i never meant that oldies shouldn't post, of course they've got as much right to post as anyone else, i just meant that when i read it i'm sad and scared as i think OMG this is what my future holds for me and i don't want it !!!! I'm still struggling to accept this bully that has came into my life, and feel very alone with my catastrophic thoughts and feelings of i can't do this anymore, i'm fed up ramming plugs in my ears every time i leave the house as there is always loud noise's going on and i just won't take the risk and go plugless, then of course my T screams even louder, i just feel like giving up, but i wont i'll just keep going for now, and see what happens when i hit the one year target, thanks again for all your help and good advice.

 

Telis, firstly i did not tell anyone that they shouldn't post, i asked them to think before doing so, we all need to vent and that is what i was doing, so apologies for offending people, and yes you're quite right some of the things that are said i don't want to hear!!! of course i only want to read positive things, and how this bully will stop torturing you and taking your life away from you, why would i want to read anything but that ? However your comments are appreciated and from now on maybe i should try thinking before i post ... best regards Carol.

 

Thank you so much cull, your support is amazing, i know i'm not alone, but feel very much so at the moment, one day i feel i can do this, and the next day i think oh no i can't !!! everything you say above makes sense, so thanks again for your caring and compassionate post, wishing you a very blessed day.

 

I have only known my tinnitus to be a real problem for a few years, and I too felt dismal and hopeless when it first started. My father had it from middle age to when he died and he soften complained about it. But I think there was less support in the medical field, no internet to find like persons, no research to find a cure or amiliation of symptoms.

At first I needed to mask it with a fan at night. I still am aware of it during the day when it is quiet. Then I learned that masking is not dealing. About 6 months ago, I realized that I had habituated to it. It just wasn't bothering me, except on a few occasions when it seemed to get worse for some reason: stress on my part is a big factor.

In the last months, I have had trouble gaining this serenity in my relationship with T.But is is now going back into the habituation stage of my life with T, and the past few weeks there are times I think it is actually gone, but it has just receeded because it can't win the war. It's still there. Make no mistake. But it is not a monster to me anymore. It takes time and understanding to be able to cope; at least it did for me. This forum has been a great blessing, to hear the pain and to hear the success, both of "oldies" and "newbies."

I think everyone adapts in their own time, but it doesn't happen overnight. Sometimes it is like having pain the doctors can't control for you, until one day they find something that works. In the meantime, you have to live with it ao what you can.

It was mentioned above that cognitive behavioural traing can work and I truly suggest that. At any rate, I hope you will soon come to terms with the monster under the bed, and banish it.

 

Another thought or two.

My late husband had a saying:
God gives his heaviest loads to his Strongest Children

I didn't always want to hear this, but it was usually comforting and instructive.

Obscessing, as others have said, over thinking, giving too much attention to negative thoughts, worrying excessively, will focus your attention on the problem and you will live inside that "prison of pain."

I have faith that you will find your way. Please be patient. Come here to rant, to ask questions and get support, take part in the forum any way you need to. It has been a great support me.

I hope I haven't sounded condescending. That was not my intention. I wish you the best.

 

Not at all clare, and thank you, and bless you for caring x

 

So...someone who has had T for 10+ years, and is having a difficult time coping, shouldn't post so as not to discourage a newbie?

So where does an "Oldie" go that needs support?

The vast majority of people habituate. It takes time, we all have our own schedule. All that need support should feel free to seek it, no matter how long they have had T.

 

carol kane wrote:
Why do i read time and time again, Tinnitus since ... 1990, 2001, 2002, etc, etc, this just makes my heart sink, as all i ever hear is you will habituate, you'll start forgetting about it, your brain will get bored of hearing it, and i think halleluya!! time will help me so just be patient ... then someone post's i cant take this anymore!! and i automatically think OH!!! must be a newbie ... NO ! NO! NO! it's someone who has had it for donkeys years and is still posting things that just send me in to a whirlwind of what my future holds ... surely if after many, many years of Tinnitus you would have ended it all knowing that this shit is here with me for life ... NO ONE can endure this life of hell for 10, 20, 30, 40 yrs without habituation ... i don't care what you say it is not possible to want to be alive with this screaming in your head 24 7 for over 10 yrs plus ... so oldies think before you post, some of us are just new to this crap and look up to you oldies for hope and support ...

My suggestion is to cut the chaff from the hay and you can do this by reading Success Stories here or on Yuku. My estimate is between 90 - 95% of people get to a point where their tinnitus has no impact or little impact on their life. The time will vary according to other symptoms, their emotional makeup, other health issues etc.... There are a relative few who just can't seem to get from point A to point B and there might be a good reason for that including what I just wrote but another reason might be that they have not had proper treatment whether it be TRT, CBT, meds or lack of a support system. You will always get somebody who posts how miserable their life is and how they hate tinnitus or whatever but there is more to the puzzle than just tinnitus because time is a great healer and that is exactly what happens to 90+% of people with tinnitus.

 

Pef, i'm sorry that you have been offended by my OP, i did not suggest at any time oldies should not post !!! i am often told that if you give yourself time, things will get better and better !! SO my point is this .... time does not make things better as people who have been suffering for 10, 20 ,30 years are still suffering, so WHY???? are we told to give time time ...when quite clearly time has not made things better for THE OLDIES !!! and yes i am alarmed when i read these stories as my thoughts turn towards my own future and how bleak it is likely to be, as reading about some ones miserable life since getting T has been a struggle, full of depression, no social life, isolation as no one gives a damn, must i go on !! of course they need support and of course they should seek it !!!! all i'm pointing out is that one minute us newbies are given hope and reassurance in one post, and then the next minute all that hope is taken away by reading the next post, i hope i have explained myself to you.

 

Thank yo

Thank you Magpie, your reply makes a lot of sense to me, i would never of thought of these things, so thank you for not telling me off for my OP.

 

because a lot of the so called oldies have it get louder and have to habituate again. The cases in which people live in isolation are quite rare even on this board. If you are bothered by it just dont read those posts.

 

I don't know what i'm about to read until i start reading it ... as for so called OLDIES that is what they call themselves !!!