Invitation — To Long-Term Tinnitus or Hyperacusis Folks, Still Hurting, Suffering and "Silent"...

[Zimichael]

An Invitation – To long term T. or H. folks who are still hurting, suffering and "silent"...

I have been mulling a post like this for months, but have just not had the inner strength and will to do it. Not sure I do yet, but I'm going to give it a go. Consider it an imperfect attempt, but maybe the general message will come across and something good comes from it.

OK, right up front here I am going to make some comments, warnings, disclaimers, whatever. People who have known me on TT from 'before', when I used to be much more involved and prolific will recognize this trait of mine.

1. If you are into short posts and short attention span stuff, do not even bother to read further. I do LONG posts and this will be one. I don't expect complex and multi-faceted issues to be 'tweet' worthy, trite material.

2. I am specifically trying to reach people with tinnitus and/or hyperacusis, who are potentially still on TT, but who have sort of 'gone silent' mostly, because their needs are not being met, or they are tired of trying to explain that good thoughts, good attitude, etc., etc. will not simply make their T better.

3. I am hoping that this post will not generate a bunch of "chit-chat". If it goes anywhere I would like responses to stay on topic (like hello!), and not wash all over the place leaving one page out of every five with actual useful information. I know for a fact that this 'trivia unconnected information overload' clogging more serious threads has driven some (many?) longer term members away...or to go silent. I could name names, but hell, I will just use me as an example! I got tired of it. And too weak to scroll through it all. For those who don't know me, check my history and see how my interaction dropped off a cliff. And yeah, I was not well known for posting garbage either.

4. One of the major "obstacles" that a number of us long termers had a while back, was, the moment we put out any kind of: "Hey, you know all this stuff does not work for me, and I'm not getting better". There would be an attack by a certain medical professional that would basically hijack the thread and turn it into a dog-fight of epic proportions. The basic theme being: "Your lack of progress and acceptance of T is your own fault. You clearly have the wrong attitude because I got over mine and if you only did the proper XXX method you would not be such a loser." Words to that effect. Those of you who cried out in private or in public: "Why the hell is it always OUR fault that we are not getting better? There are different types of tinnitus that just do not fall into these fixes, or allow habituation that well over a reasonable period of time!" The end result was a kind of despair, and lack of willingness to get attacked again, or to even post much at all. In other words, to suffer in silence.

Hey you guys and gals, this post is for you! That acrimonious individual is no longer on TT (and has not been for months, thank god) so we can more freely discuss these issues without almost certain derailment and Fight Club erupting.

5. You will notice that I started the post heading with the word "Invitation". I mean it as that. However, one problem may be that the very people I am trying to reach here are not looking anymore because they are "off TT", or only show up now and then, due to what I mentioned in item 2 above. Well then, I have a request for "others" who are reading this.....If you know of some TT member who has "gone dark" but is still suffering and may be interested in re-logging on and joining this conversation (or contacting me in a PM), please could you notify them. Thank you!

6. Lastly, on that PM aspect, and my overall energy levels to get too involved here. (Though maybe zero will happen with this post and it will just blow off – I have no idea)... I have had a goddam awful year. Beyond shitty. I am seemingly getting more stable but it could be a fake-out and I may just realize I don't have the energy to follow up on what I may propose here. I am not one of those people who just goes "poof" in the middle of communications online (which seems to be appallingly common and a real source of dismay to me for the future of humanity). Anyway, will just have to see. I'll do my best, but in some ways have trepidations about logging in to TT every day like I used to....which in itself is a good question isn't it?!

So, here we go huh! I haven't even started the actual post per se, but already it's a mouthful. I warned you! Though in fact these points above have everything to do with the core issue I want to bring up and the hope that "many heads are better than one" can enable some fresh ideas on this to come to the surface.

As a kicking off place, perhaps a little comment may be in order for those who do not know my history here, to show that indeed, I was a "tryer" who did not just sit still and bemoan my reactive T. & H. condition, etc.

I was one of the very early people to try a course of Potiga (Trobalt/Retigabine)...yeah the thread with a billion pages. Back then, last October, it was a pretty outrageous drug to take on as we had very little real information on it compared to what built up over time. High risk was an understatement! And it kicked my arse. Badly. Then some months later I tried Cymbalta (for various reasons that made sense despite having tried many SSRI's and SNRI's in prior years), which also kicked me out of left field. Then this past July I tried Keppra (for my Hyperacusis), which also blew me out totally. Not to mention some other misc. minor things along the way.

In short, I've tried stuff...and paid a heavy price. These drugs were highly destabilizing emotionally, psychologically and physically. And one of the key aspects was, I was alone! I had no in-house support system. And quite frankly, emails or messages from other TT members are great, but don't come close to helping stave off major anxiety and fear where one's core has dropped through the center of the earth....and refuses to come back up for weeks on end. It was more than hard...and for now I am well and done with drugs/meds to possibly help my T. and H. And yes, this above is a very short list of what I have tried over the many years I have suffered with this shit.

So, one of the main things I am wanting to address here is ISOLATION. Tinnitus can have a radical effect on social interaction, as even newbies to it know, until it calms down and even becomes tolerable, etc., etc., etc. However, what happens to those few of us where it does not calm down? Or where it takes years and years to become tolerable?

Isolation is a hallmark of long term "reactive tinnitus" sufferers and of course a big driver for Depression...and a nice vicious circle setup is almost inevitable.

Let me offer a few quotes to illustrate my point. These are from the past few weeks, totally current, from private emails/conversations, with 'silent' TT members (yes I have permission to use them). And of course I could throw in a boatload of my own quotes if I were to dig back over the past year before I dropped off the radar too:

.....Yes, how do we address this suffering???????? That is the million dollar question. My H is so bad that my own voice is starting to hurt. Why do I keep getting worse?!? So sick of hearing on TT that "it will get better with time" BS. It ain't! I used to be so active . . . So into life! Hell, I ran marathons FOR FUN! Now it seems like such a waste.

.....I am really hurting today . . . my condition seems to be worsening. My neuro-otologist thinks it is jaw related. Both of my ears are constantly plugging up, and the noise is really loud. The constant pulsing is driving me nuts! My H is getting worse too. No way could I keep working, it was just too difficult. I don't see how the jaw can be doing all of this. It is so intense. Unbearable. Not sure how much longer I can stand this misery . . . Sorry that I don't have more roses, rainbows, and butterflies to share. A nightmare would be ecstasy . . .

.....Something happened and my T worsened. It's quite serious. I resorted to herbal sedatives besides Clonazepam just to bear to exist, being tortured like this 24/7. So I am drowsy most of the time, unable to do almost anything. Hard for me to even write an e-mail.

.....I realise that I have nobody to help me, I have only me to try and save myself, but the problem is that I don 't feel it in me that I have what it takes (the potential to change things around). See, I was in trouble in my life several times, but I always felt that power deep down inside me to overcome the situation, now I don't. But I don't feel like giving up either.

.....I am getting worse and worse (My T got very very bad). One day I was so sick that I got very scared. I felt the need of somebody helping me. Very bad T. I would have preferred somebody who can understand, so I thought about you, but in California was too early. I couldn't even have talked that much on the phone, as I was extremely sick. The only help that I could have gotten would have been to have somebody come over. Then I realised that there isn't a damn thing you could do for me, and that was like a wake up call.

Yeah, this is just a drop in the bucket. I could give you loads more but the points are clear.

So, as I have become more and more burned out on the hopes of a 'cure' just over the horizon, my attempts to jump the gun a bit, and then the unending ability to keep getting more and more and more "information" about potential treatments (or scams) that fizz out...I realized that "information saturation" was becoming a curse. It was not helping me at all. It was not helping the other long termers I knew about who were suffering. We want a CURE now! And we are not getting one – or one we haven't tried. Meanwhile, we get trashed and suffer. That becomes more real than the "hopes" that are a continual moving target.

I want to see if we can figure out some way to address this suffering that is more than just online emails and posting. It has become more critical to me now than a "maybe cure someday". Possibly there are others out in T. land that feel the same way. If so, chime in!!!

I'll start off with a few 'suggestions', and admit these may be wild and speculous, but what the hell...

- I have had some chats with Markku in the past about T. folks getting together "somewhere" in the world, to meet each other and have a kind of retreat where we have "noise level safety" (like duh, we all know what that means v. the general public), and can discuss issues face to face instead of in this cyber un-reality.

- I have even suggested being willing to coordinate/create some kind of semi-improvised theater/dance piece with volunteers (I have some experience with this) where we do a "Tinnitus Dance-Performance" – for our own benefit and maybe to get high quality video of, and if any good, to post online or use for "propaganda/understanding" purposes. I have seen amazing things happen with improvisation and trust. Yes, even from people with major physical handicaps, in wheelchairs, etc.
So, anyone with a big estate in the countryside? Hot spa retreat perhaps? Whatever...speak up.

- Some kind of "visit help" program. I think a couple of TT members already do this, and of course it is full of possible potholes and pitfalls. But geeez AirBnB is international and they seem to do it highly successfully where 'strangers' are staying in one's home or on the property for short (or longer) periods of time. Despite the difficulty of travelling (noise!) it is something I would consider, to give more meaning to a journey than just 'taking a vacation' say...which has become stressful enough if end up in a nightmare place with a gravel crushing plant, or barking dogs 24/7 just next door (conveniently not mentioned or photographed in the write up!).

- Phone support. It is a significant step up in 'reality' from emails and PM's, to me anyway. Google Voice is free throughout the USA and Canada, etc. and very cheap internationally. I guess Skype is too (I don't have it). Anyhow, voice contact is a lot more visceral and easier on my fingers than hunt-and-peck typing. (This takes hours). Now I realize some cannot use a phone as it hurts too much (I have to use a speakerphone), but where possible, it could be a big help. And yes I know this can happen already and does happen with TT members (I have talked to quite a few over the past few years), but I am "pushing this" more.

Ummmmmmmmmmm.....OK, that is long enough for an initial post. Not bad huh, four pages on Word. Clearly I am keeping to my tradition so I must be getting a bit stronger. Pitch in if you have something to say on all this – but again, please keep on topic, even though indeed, it could be a rather 'wide topic'!

Best, Zimichael

 

[RaZaH]

Maybe we could have a separate place in this forum for people who are suffering badly with T&H and are lonely or in dire need of someone to talk to, possibly with an option to setup skype meetings ? Just a suggestion, no one should suffer like this alone.

 

[glynis]

I am always happy to support people by phone calls and been doing it a long time.. lots of love glynis

 

[amandine]

great post zimichael.....well said and so correct too...well done...about time someone said it....

 

[valeri]

A lot of us just got sick and tired of being told "it's just a sound", "it's your reaction", "it's like living next to train tracks/airport, fridge noise, grandfathers ticking clock", "the more attention you pay to it the louder it gets".... bull bull bull.... and some more bull....

Thank you @Zimichael!
Spot on!
It's really sad that those of us who really suffer have been marginalised and pushed into the "too hard (read: too negative/don't want to scare newbies) basket", while stupid threads like "is my tinnitus going to disappear?" or "should a go to a loud rock concert" gets 30+ replies...
Hmmmmm.......

 

[SoulStation]

Thank you for the great post. I would love to be involved in any groups that come of this.

 

[Rina]

Great post!!! I'm so glad you took the step to do this!!! Count me in! There are many who already help many sufferers besides posting on this site. I want to thank @erik, @Danny Boy, @Carlo, who have been very supportive beyond TT...

 

[noisebox]

I find writing on the hyperacusis section rarely gets many replies. I feel alone trying to fix my H. I honestly cannot find anybody here in the UK to address it with me. And TRT book is far too expensive. I done know which way to turn with it.

 

[Zimichael]

Thanks to all above who responded to my 'not particularly light reading' post.

Just a comment briefly to @noisebox first.....Ummmmm, may I suggest that this thread is not what you possibly are looking for at this time. I have not checked all your postings, but did see you got a few replies in the hyperacusis section so don't write it off yet. Instead I suggest doing the "homework" and back-tracking on it and looking at old posts as there is a TON of information in that section. Much that could be of use to you!
Or another option is to just flat out start a new post altogether on the main "Support" page basically saying: "Help! I am not getting any help!!!" or whatever.
This thread of mine here, is more about trying to get more "global" and overall brainstorming, than specifically helping one person...as that will be what I call "off topic"...OK?...Thanks.

To anyone else following this thread.....Well, I want to give it more time to float around and see if it attracts any attention from the more "hard core hurting" people, or those who clearly feel the relevance of this re what I said. It may be that there just is not enough interest, momentum, ideas, will, energy, etc. to do much about it and I will just sigh and back off. There is a threshold for change so to speak and my experience with the internet and "getting real" and getting something sustained on a tangible personal level, has not been at all wildly successful - to say the least! That may be just me...or it could be the nature of the beast.

In any event, I am hoping for some "ideas" that I have not thought of or even considered (the point behind: many minds are better than one), or indeed commitment to do something by/for us folks in the long term, not roses, butterflies and sunshine camp.
Feel free to throw out any darn goofy thing you can think of. You never know, it may just "click" somehow.

So, I will keep track of this thread every few days, see where it goes, (if it goes) and then make some kind of conclusion or "next step" recommendation. Too early yet, but if it drops down off the radar (front page of "Support") it shows that there is little enthusiasm or resonance with many folks.
Incidentally, I do know that some of the target people I'm aware of are indeed "hurting so much" right now they have not responded or even logged in to TT as it is too much to consider...Yes, really in shitsville.
This hard core T. and/or H. stuff can be goddam awful for a long, long, long time.

Best, Zimichael

 

[Zimichael]

I'm bumping this one more time, then will make a summary statement...as perhaps the day that the AUT00063 hope clearly "blew up" is maybe not the best day to call this effort of mine a 'wayward sheep'. However, so far it looks like there is very little "interest", or "support", or "relevance" to my query/thoughts/post and it dropped off page one of the Support Page pretty quick = out of sight, out of mind.

Like @attheedgeofscience in the Autifony thread, I am not going to put my much more limited (currently at least) energy and strength than he has, into something that is not needed or wanted by a significant number of people. It just will not fly, especially in the "cyber world" so to speak. Been there done that. And I'm not saying this in a "downer mode" way, just stating the facts of my experience with these types of things in the 'online world'. [Though for sure we did get on a roll there with Team Trobalt a year or more ago!...It was great, but almost an 'exception' I guess].

Anyway, I will continue to work on this privately as am already doing, and within the confines of my own very up and down limitations. The "cure" train got hit pretty hard as we had a lot of hopes for Autifony, so in a way, to me at least, it makes my points about potentially new ways of support, and contact, and meeting in person, etc. seem more relevant than ever...But??? "It is what it is".

Best, Zimichael

 

[OnceUponaTime]

@Zimichael Bless your heart. I just wrote something here today that somehow (in a few words) can tell you how I feel at times.
https://www.tinnitustalk.com/threads/had-to-cry-today.11536/#post-142038

"Some people here are crying and going crazy because they hear their T when they put their fingers in their ears or that they hear it only when they go to bed??. Really??? I WISH that was my case, I'd be like in heaven. Some people going on RTG when they have 2, 3, or 4 T?? I WISH, I WISH mine was that low for a day!! Sigh... This too shall pass. Considering TRT even when I cant stand the feeling of my own finger in my ear canal...ugh."

I guess I am not the only one that feels like this. I really try everyday to live my life as "normal" as possible but I do have my limitations. I was telling my husband I might as well go get my "handicap" sign for my car, from the social services office and at least I'll get something out of this T misery...a parking spot all the time. (kidding of course). I'd like to join the conversation and exchange thoughts.. Be well Zimichael.

 

[OnceUponaTime]

I am not going to put my much more limited (currently at least) energy and strength than he has, into something that is not needed or wanted by a significant number of people.

But if one person NEEDS it, and you/we are able to help, then that in itself is much. Bless you.

 

[Rina]

@Zimichael ... When do we start!? Let's get organized and do this!!!!

 

[Zimichael]

@OnceUponaTime ... Thanks for the response, and indeed I am no foreigner to the "crying" aspect. Glad you have a husband that is supporting you with all this!

@Rina ...Great, that you want to start and get organized. Please feel free to go ahead!
I have no more ideas than I posted at the beginning, and as yet do not see anything new other than what many of us already do = using the phone to contact someone, as a somewhat more 'real' step than a PM or email.

Also, as mentioned, I am in my own "trashed state". Thus not a bundle of energy and intuition at present. Just trying to keep afloat here...So, indeed, I don't "own" this invitation. Anyone who wants to run with it and get stuff done that can address these issues, please do so!
*[I know of three others who 100% agree with the need and the initial premise of my post, but have apologized privately that they just do not have the strength or ability to respond on the Forum].

OK, can't think of anything more to add. Though "Thank you!" to whoever it was who thought this post was important enough to tag and lock (for a little while I presume) to the top of the Support page. Markku??? Thanks, you are a scholar and a gentleman.

Zimichael

 

[noisebox]

Sorry but I must not have read your post properly, when on my PC the T goes nuts. Please what do you want us to do?

 

[Tamika]

@Zimichael
Great idea and so good of you to put your time into this. From reading the forums I realise there are so many long term sufferers out there who are struggling. I'm a newbie still at less than 6 months and fighting hard to find habituation. I have no energy or reserves to offer help, but I hope you find others who can.

 

[Zimichael]

Sorry but I must not have read your post properly, when on my PC the T goes nuts. Please what do you want us to do?

Ummmmmmmmmmmm... @noisebox - what I am asking people to do is to see if they have any better ideas or more ideas than I do about how to help folks in the long term T box who are hurting and who have sort of given up on the zillion things they have probably tried. That generally means they (we) are feeling continual elements of isolation, frustration, helplessness, hopelessness, despair, etc., etc. Especially after things such as Autifony go "boom!"...Though by no means is that the only one that has gone over a cliff.

So, if you have any ideas...that is what I want to hear about.

If you can find someone who has a castle in the Alps and would like to donate a week or two to us at TT to have a get together, maybe some of us might just go and do it.
If you can help figure out how to activate, elaborate, add to, whatever...any of the "wild card" ideas I have put out already...Go for it.
And so on.

My energy is limited. I am not able to carry this ball without help, and doers, and genuine interest. With a 'cull rate' of maybe 95% for online stuff (my estimate), if we get 95 people showing interest in an idea, maybe 5 will actually show up in person...or am I being too pessimistic?
I guess what I'm saying is that we need a fair amount of momentum behind any idea to actually make it happen - (phone-calls aside, which are already happening).

best, Zimichael

 

[noisebox]

It really is hard to generate support, oddly given that so many suffer. I felt that if every member of a group like this gave one pound,obviously I'm in uk,then that would go a long way towards research. Or even an online petition, we have change.dot org here. But I honestly doubt enough would sign. We are thousands but many are apathetic. I would love to see a petition go to Autiphony to make sure they don't stop trying, that they maybe modify Trobalt, or look at keppra. They need to know we are hurting so bad.

 

[Sgguy46]

As a relatively clueless sufferer, with the hope to habituate this one day soon, i wish to find a coach in my city preferably who has walked down that path who can become my guide so that one day i can also guide others. That would help me. Would be great if there are people in TT who are willing to be such guides.

 

[Zimichael]

i wish to find a coach in my city preferably who has walked down that path who can become my guide so that one day i can also guide others. That would help me. Would be great if there are people in TT who are willing to be such guides.

This is a very good idea @Sgguy46 ...The sort of "actionable" thing I have been trying to figure out.
Yes, like phone-calls and PM's, I know that in the past I have seen members just insert such "invitations" into conversations/threads when they see that another member is in their local area...and maybe they meet up, etc.
However, perhaps a more formal arrangement, or section on TT even, could be set up where "Local Link-Up" could be posted and requested??? In bigger cities the odds may be better for such connections.
Considering though, even much of the UK for instance is not that big you can't get somewhere pretty fast by train...(v. USA which is vast in size by comparison.).

Note...I looked up your "location" by going to the obvious (two clicks) place, which is your Profile...and, Ahhhhhhhhhhh....I do not see any real info. written there about you, your T, or your location even!!!
To me this is basic and valuable info, and would be sort of "required" to allow others to try and find you locally. *[And yes, longer term members will know that this is something I have pushed for a long time too...more basic info on one's Profile. Look at @attheedgeofscience 's for an incredible example of how it's done...go to his Profile, then the Information tab...Yeah, Wow!!!].
I do not have the desire or time for the alternative, which is reading all a members posts to see if somewhere they mention their whereabouts. Try that with some of our more 'prolific' posters!!! Headache'sville.

Again, good suggestion. Take it further if possible.

Best, Zimichael

 

[noisebox]

This is a very good idea @Sgguy46 ...The sort of "actionable" thing I have been trying to figure out.
Yes, like phone-calls and PM's, I know that in the past I have seen members just insert such "invitations" into conversations/threads when they see that another member is in their local area...and maybe they meet up, etc.
However, perhaps a more formal arrangement, or section on TT even, could be set up where "Local Link-Up" could be posted and requested??? In bigger cities the odds may be better for such connections.
Considering though, even much of the UK for instance is not that big you can't get somewhere pretty fast by train...(v. USA which is vast in size by comparison.).

Note...I looked up your "location" by going to the obvious (two clicks) place, which is your Profile...and, Ahhhhhhhhhhh....I do not see any real info. written there about you, your T, or your location even!!!
To me this is basic and valuable info, and would be sort of "required" to allow others to try and find you locally. *[And yes, longer term members will know that this is something I have pushed for a long time too...more basic info on one's Profile. Look at @attheedgeofscience 's for an incredible example of how it's done...go to his Profile, then the Information tab...Yeah, Wow!!!].
I do not have the desire or time for the alternative, which is reading all a members posts to see if somewhere they mention their whereabouts. Try that with some of our more 'prolific' posters!!! Headache'sville.

Again, good suggestion. Take it further if possible.

Best, Zimichael

I know the uk is small in comparison to the US, but still I don't think people will travel out of their own town or city. Certainly with H I now could not bear a train journey. Glynis offers to ring anywhere in the uk to talk to people. And she does I have talked to her.

 

[Zimichael]

I know the uk is small in comparison to the US, but still I don't think people will travel out of their own town or city. Certainly with H I now could not bear a train journey. Glynis offers to ring anywhere in the uk to talk to people. And she does I have talked to her.

@noisebox...In some ways I agree with you, that the hassle and hurt (if have H in particular) will limit distance to travel. However, even with bad T & H I can still travel for a while with my choice of three different grades of earplugs or Bose NC headphones, etc. Yes it can send my ringing up for a while afterwards (the "internal feedback loop" or whatever-the-hell-it-is gets stimulated when I close off my ears - though 'over the head muffs' do this less than plugs in the ear canal), but if no new damage occurs then it 'baselines' again once in quieter area or after a night's sleep.

Some travel can be done if the effort is worth it, and helping someone may be worth it. I would do it for sure, even though I am trepidatious about even going into bloody Safeway with their overhead speaker blather.

I lived near Oxford for quite some time, and mid Sussex, and used to work as a waiter in the Lake District summers...and trains from/to London were so quick and easy v. traffic jams on a San Francisco freeway or whatever. Even all the way up to the Lake District seemed to go by so fast...and that is a long way. So closer places seem possible to me in countries with good transport systems.
However, I know what you are saying...as shit the bloody Tube in London must be up over 100 db at times for sure!!!

Phone-calls are good yes, but they are nothing like having a real live human at hand if there is genuine understanding (and who understands T and H better than us who have it?!) and some connection. Being human, we may not "gel" with someone to even want a face to face, but that could probably be "sussed out" before-hand by phone. Then if the feel is good, then a meet-up for tea and talk or whatever, would probably go OK.

best, Zimichael

 

[derpytia]

I totally agree with the OP 100000%. And count me in!

 

[Zimichael]

I totally agree with the OP 100000%. And count me in!

@derpytia ...please excuse my shorthand or texting code ignorance, but what or who is OP???

I was about to suggest to @Markku that he untag this thread from the top and let it go as it will, as so far have not had any huge out-rush of "actionable"new ideas about how to make any of my original (or the few other) ideas happen.

I will do a summary though, (or dovetail this thread into a few others out there) before it disappears off the front of the Support page.

Best, Zimichael

 

[attheedgeofscience]

@derpytia ...please excuse my shorthand or texting code ignorance, but what or who is OP???

Hi @Zimichael it is short for "original poster" (which would be you in this case).

Hope all is well.

 

[derpytia]

@derpytia ...please excuse my shorthand or texting code ignorance, but what or who is OP???

I was about to suggest to @Markku that he untag this thread from the top and let it go as it will, as so far have not had any huge out-rush of "actionable"new ideas about how to make any of my original (or the few other) ideas happen.

I will do a summary though, (or dovetail this thread into a few others out there) before it disappears off the front of the Support page.

Best, Zimichael

Hi Zimichael,
OP means Original Poster or Original Posting
-derpytia

 

[Zimichael]

SUMMARY CONCLUSION ON THIS THREAD - Time to close it out...I don't think anything is going to come of it.

Firstly, thanks to all those who responded:
@RaZaH , @glynis , @amandine , @valeri , @SoulStation , @Rina , @OnceUponaTime , @noisebox , @Tamika , @Sgguy46 , @derpytia .

Now I am just going to state how I see the situation at present and anyone can disagree and/or run with this on their own OK?!...Here's the skivvy:

Over 1,100 views of the thread but a total response of just you guys above. Without my input, that's about a 1% return. Also in terms of what I see as definite offers to help make something happen (over and above general agreement, etc.) I count three, or maybe four.

Apart from my original ideas of a meetup of some kind, a theater-like event potentially of use for outreach, a visiting in person help program, and phone outreach...only the "phone" one got much momentum (c/o another associated thread really). And, as you know, I consider "phone outreach" to be something already done by members, and something I was hoping to go further with in terms of more direct contact. Phone is good, but not really enough for me personally, as it is still "removed" despite being a good step forward from PMs or emails.

The "buddy/mentor" idea did not get much traction, and quite honestly, if a huge amount of members don't even want to (or bother to?) fill in their personal TT Profile details, then I don't see much hope of them sharing/adding detailed locations and contact info.

Any "actionable idea" other than what is already done by TT members (= PMs and then some direct email or phone setups from there) would take a considerable amount of energy and commitment. I know, because I was involved in Team Trobalt, and you would not believe how much time and energy went into setting up some pretty basic research and follow-through stuff. And that was with a dedicated, highly motivated team.

Imagine the amount of energy and detail required to set up some kind of TT members international get together, and agenda - at some place in the world, at some date that would work for most who wanted to be there, in a situation that could cater to our "hearing" limitations, and potential financial restraints. My mind boggles!
It took me months of preparation to just get one dance organized that I was choreographing locally, at a college with students who just showed up on their own accord, and were already familiar with all the basics, etc. Then doing it all once the setup was done took another few months... This as just an "agenda item" example. And that was all before my T vol. 4 & H level 2 event, when I was much more functional than now. So I am serious about needing help to do too much as my overall energy and resiliency is much less today.

And so on.

Thus the conclusion I have reached is, that there is not enough "juice" behind the items that I initially posted about and the hopes of somehow helping the unmet needs of long term T folks that are really suffering. Maybe at another time, or if the Gods throw me some huge "energy bars" that I can then hustle with.

Meanwhile, take care all...and keep on doing the private outreach if you already are.
Thanks much, Zimichael

P.S. @Markku ...can you please "untag" this thread from the top. And again, thanks so much for putting it up there.

 

[object16]

hi, thank you for writing this. i can touch type, so it is much easier for me to write comments, so it looks like you probably spent a few hours typing and answering. my tinnitus can get so bad, i get so desperate, like when i was out of town a year ago, and just some noise OUTSIDE of my rented apartment, coming from the street, created such a massive spike, i was taking 300mg of lyrica every FOUR HOURS! luckily i did not die from o/d (or maybe not so lucky, sometimes i secretly hope for some sort of accidental o/d so my wife can get some life insurance out of the deal). It was totally brutal. And it continues to be brutal. Some people I know, just tell me "I just ignore it". They tell me "it is quite loud, all the time" - but for me it creates huge amounts of suffering/anxiety/distress etc. sometimes i am quite sure i'm going to be dead very soon, possibly losing my mind and jumping off a bridge or something. i keep myself going, with meds, but other people have said "you have to get off those meds, they will kill you", maybe true, maybe they will, but i don't go on them voluntarity, they are expensive, and i would much rather not take anything, but that is just IMPOSSIBLE for me to do. i try to cut back, switch, rotate meds, etc. try all kinds of "strategy" but basically it is a real f***in nightmare.
every night, is the same question: will i get to sleep? will i wake up tomorrow? and when tomorrow does come: why is it so loud? and why can i never seem to "habituate"? even though i do everything i am told to, it just does not work for me.
p.s. i'm having a bad day today. 2 weeks ago i was a "success story" but now things are in reverse. - ?

 

[Zimichael]

NOT QUITE SUMMARY CONCLUSION YET...

Sigh!...OK...More then... seeing as @Markku (or the Mods) seem to be totally ignoring my requests to "drop" this thread from the top of the page and let it fade into oblivion. Plus the basis behind my original post is still 110% relevant to me - as maybe we have lost Geo now too. *[Note! - Not absolutely confirmed from what I can see, but not looking good]. Anyone think he would not have been "on the edge" if he did not have tinnitus??? Or NiNyu too??? Or those "others" I know of who have dropped off the radar, or maybe the planet???

It goes back to ..... Yes, how do we address this suffering???????? That is the million dollar question.
With a pertinent update from that same person, yesterday..... One friend said she would pray for me. I told her to pray that I die peacefully in my sleep. Never heard back!!!

Look-it, I know this is not by any means the majority view or condition on this Forum, but by hell it is real. I mean it is in a totally, totally, totally different world to folks 'wondering if they should go to a rock concert because their favorite band is playing, and if "X" earplugs are good enough', etc. Holy Xrist...I can't even begin to fathom these kind of questions. Ummmmm..."bone conduction". Ummmmm... "exposure time" and not just speakers proximity or volume. Ummmmm... four tinnitus increase levels during my life... And so on. I mean I personally have ABSOLUTE ASSURANCE THAT TINNITUS CAN INCREASE IN VOLUME THROUGH NOISE EXPOSURE. And who wants that???!!!

Sorry, I rant...but it is mere frustration at the helplessness. And the despair. And the lack of understanding from others (you have to have been there to "get it"!). And the huge waste of it all...

To which I will add then, a couple more "suggestions" at how to possibly address this:

~ A re-boot of that idea of a "meeting up in person" of folks with longer term T or T/H.

Without going into a "War and Peace" length treatise on my premises and experience of the "inadequacies" of online relationships being "real", I will sum it up by saying - they are not. There is nothing like meeting people face to face, for what has been the gold standard for human interaction since the dawn of time. Period.
Yeah I know, the Facebook "likes" believers think it's Christmas and all these supposed people out there love them to bits, but it's bullshit. Yeah, I'm a fossil in the present era. But there is nothing like actual contact to determine relationship depth and connection.

Thus, this "meet up" idea. I mean, is it so hard to imagine that we could not have some kind of annual TT meeting in person??? At some place, where we could just be folks with tinnitus meeting up with other folks with tinnitus and doing what humans do...Talk, share, support, rant, rave, cry, connect, brainstorm, come up with ideas that have not been thought before, or were too ephemeral to grasp until brought into the light of day with others adding to the conversation. And so on.
Hell, @Markku , has TT ever done this???
I know there have been tinnitus 'conferences' posted before, but those were for basically researchers and "white coats" to expound on their papers, or some such stuff.
What about actual tinnitus sufferers??? Do they ever meet, solely for the purpose of what I mention above?
Probably in big cities there are no doubt Tinnitus support groups, but I don't recall anyone on TT ever posting about them or reporting on them. (I don't have long institutional memory here).

Yes it would be hard to travel, but I know I can do it with adequate precaution (three sets of earplugs and over-the-head Bose NC ear-muffs). I know some cannot. But they might benefit from what comes out of such a meeting.
Do not underestimate the ingenuity of "spontaneous combustion of ideas" when people get together IN PERSON to compare notes and think about stuff in a group.
I have seen the magic of this too many times. Plus I have seen the huge positive difference in 'attitude' towards challenges that can come from shared experience like this.

Like I said way back...Isolation is a killer. And emailing or chatting online just does not do it...for me. And I suspect numerous others.
So people...What about it??? Can we have a show of hands here of anyone who would seriously consider travel to a dedicated 'retreat/meeting/get together, of some days (or even a week?) at some 'safe' place to do what I suggest above?
Speak up or forever hold your peace - and we don't get "peace" so you may as well darn well speak up!!!

~ OK, next idea. If we can't do some sort of "demonstration" (dance/theater/whatever) thing about what it is actually like to live with long term T or T/H...how about a book?!

Yeah, I know there are lots of books on tinnitus, but just try Googling: Books on personal experiences living with tinnitus. Not exactly overwhelming. And as expected, primarily "professionals" telling all about it, etc., etc.
What I have in mind is trying to get across what it is truly like to live with this beast long term and how it affects even the smallest almost invisible actions that have to be countered, or addressed or avoided...and the toll they take on one's psyche. The adaptions. The loss. The hopes that don't pan out (Autifony anyone?!). The lack of understanding from those who should know better (ENT's?). The way one's world changes in relation to such a basic given as "sound". And so on...Indeed, success stories too, but primarily if so, the interim experience of what it was like before that 'success'. The suffering part. That is the area that has not been covered in enough visceral detail in my opinion. It's like being on Mars or something...shoved under the rug because most people who get T do adapt, so those who don't must be dummos, or losers, or not taken seriously, or something.
It's a failure of imagination and fact. It needs addressing.

So, here's another idea...Someone write such a book!

Maybe it could be me. Maybe if I had enough inspiration or pull to do it I could somehow muster the strength or ability. It has been suggested before and I have had some preliminary ideas, but quail at the effort. For sure it could not be about just my own journey. I'm really sick of that one!!!
Perhaps some volunteers would be willing to share the intimacy of their own stories? (Must be long term, not short term T folks = different animal, though I fully acknowledge the beginnings are almost always traumatic!).
Perhaps an accumulation of say half a dozen different people's lives with T could make up six stories, or chapters, with their variance and vagaries illustrating the overall realities of what this condition does to us?
Perhaps one person has great detail on their treatment by the medical profession? Another what it's really like to try and live with young children and have reactive T. Yet another, the isolation of having to give up everything that had meaning before. Another the way 'friends' just drop off over the horizon with time. And so on...

Again...speak up if you have any thoughts or opinions on this!

OK, I'm done for now. And @Markku if this thread just wallows in the mud here...you know what to do!!! Thanks.

Best, Zimichael

 

[amandine]

Again...speak up if you have any thoughts or opinions on this!

Hi Zimichael and thank you for your post! Again! First problem is that most people including myself try to ignore it and end up suffering in silence so this is why there is a resounding silence from people - they hope that by ignoring it this will lead to habituation (whatever that is).

Ok re the book idea - I had an idea months ago to write a book about it - but publication is the issue once the book is written and marketing to get it out there and read!

As for demonstrations - what about demos in a major city of each country possible by as many as is possible! All on one day at hopefully the same time of day or night depending where in the world time zones etc!

Team Trobalt does not exist anymore apparently nor does team awareness! ATEOS has dropped off the radar it would seem re these teams and tho he is still posting the team members have lost hope guidance and steam.

So I admire your fight in you - personally I cannot take any more of these suicide stories - they make me personally much worse! I very much suspect that others feel exactly the same way.

No more unsubstantiated stories C(I dont mean you Zimichael!- I mean the people who post of a possible suicide od a member with insider knowledge thru the personal friends of the suspected suicide and then suddenly have no possibility of providing any proof whatsoever to their posting / story / gossip and disappear of the radar with that posting and yet continue to post on other things - having set off an unhealthy barrage of gossip).

Ok so waiting for more ideas....I love your ideas and admire your tenacity of spirit and heaven knows I have it bad but I dont have it as bad as you that is for sure!
I like the idea of a dance or theatre but I feel that we need something strong and fiery so that the public and the govts cannot ignore it!
I also have another idea but would prefer to discuss with you personally first?

ok that is it for now