Data Collecting from This Site

I don't get this pissing contest "Mine is louder than yours" thing. I can hear mine in the traffic with radio on, also, both ears, did I mention it's upwards of 11.000 Kz? Do I get a prize now? Are we supposed to compete based on who has it worst?

@Fangen you're on track. At 3 months I was in a way worse shape than you, you'll get better.

Getting back on track: I agree with @eric peterson that people here tend to overrepresent worst case scenarios. I know of two people who had T, both personal friends of mine, and they never talked about it before I started talking about mine. They didn't even know about boards and support forums. With that in mind, the people around here seems to be also the most willing to participate on research and even serve as human guinea pigs for experiments, so why not try and make the best of it? I'll support any initiative that raises the level of understanding of this condition.

 

I agree, that is kind of the mentality sometimes here. People with mild T are being dismissed because "oh you probably have it mild, you can't understand me/us". We all hear ringing everyday, it's not that anyone with T are being happy and joyful each morning we hear it but it does depend a lot on how you feel and act towards it. I took the advice of many here to stop fighting it and just accept it. It got better just like they said, so I don't know why we need to have a debate about what is the best solution when you really have one. Acceptance.

 

A new audiologist I saw recently, who had T for a full 2 years but now no longer hears it, said to me that approx 97% of all his patients at least have it go away or stop hearing it.
In his opinion DRs should not tell us it will never go as this is mostly totally wrong.
My T began in 2012 and it did go 99% of the time unless I went into a noisy shopping centre (never been to noisy events since onset) but 2015 it came back due to Dr negligence ultimately causing extreme anxiety, I am now still fighting to habituate again.

 

@eric peterson I agree to disagree. I get your point, I do. But here are the people who are really in pain. So many gathered in one place. So it's not to collect data to inform the world that this is the average tinnitus sufferer, but instead show that this is what people who are really suffering is feeling and going through. Because it's often those people who are not taken seriously enough. I've been there with my T. Most people here been there with their T. It's a voice that should be heard and to show that when you are suffering so much that you are visiting this forum then the chances are high that you are in bad f*****g pain. The world should know that and that's why I think the data collection should be taken seriously but with a reminder that it is from a forum where most people are suffering and are not representable for everyone out there.

 

The worst danger for people who has T, that's when T suffers say "I can live with my T, that's not a problem for me blabla", because that's stigmatize the other T sufferers who has pain (like me, cause I have physical pain with permanent ear pain/headache/hyperacusis)...

 

I'm sorry but I don't see the logic there. Should we (who has accepted T) to lie? How does it stigmatize anyone that are in mental or physical pain to say that "I can live with T"? That doesn't mean that "if i can live with it, why can't you?". It's just a statement. I say it on this forum because of the newcomers that fear that they might never be able to live normal with T. Most of us do. Unfortunately there are people that have a tougher time with T, and that is also why this forum exist.
My T is not a problem for me, I have accepted it. I don't think that I am better than anyone else for that reason. I struggled with it but now I have learned how to live with it. We all walk the same road, some reach the destination faster and some take longer time. Whatever path you take, that is fine. Neither road is better or worse.

 

A lot of non sufferers think, if one can, others too...that's what I meant. I'm very happy if you can live with your T, I can live with my T too ;-) but that's not easy of course, and I'm sure you prefer to have a broken leg than your T ?

 

Do what I've been doing this whole time,living my life as best I can regardless of this two headed dragon that battles me day in and day out.I've done the Habituation thing too many times now,get my life sorted and on track just to be hit with another blow.I refuse to sit like a hermit and wait for a cure to arrive,I'd rather be out living my life until one day hey presto a treatment arrives.I just hope it arrives soon as I'm starting to feel somewhat desperate now,I truly believe a cure or a huge relief is scientifically possible it all just comes down to one thing,money.

 

I do have ear-infected T and it's not going away or getting better, and just when I thougt I was getting better I got T in the other ear. I have always been sensitive to noise and believed to take very good care of my hearing, so having phantom noise in my head is my worst nightmare come true. I'm not trying to argue or anything, I'm just saying what I feel. I'm going to try everything to fight this, and researchers should be too.

 

@Fangen you really should stop generalizing, tinnitus isn't a one-size-fits-all thing.

 

I agree with @Atlantis but also understand your way of seeing it @Fangen my fellow Stockholm resident
Of course it's very personal how you perceive T and how you react to it. But if it reaches a certain level of volume and/or character you can't just accept it and move on. I know this because I have super fluctuating T. And some days, like today, it's so intrusive and awful that your whole outlook on life changes. You can't just ignore that and tell yourself to just move on with your life. It just doesn't work that way. I know what people with severe T goes through and my sympathies go out to all of them <3

 

I just want to clarify that yes habituation comes one day to most people but when it's severe or extreme it's so much harder.

 

I am not generalizing anything, that is your own view on what you think I said or didn't say.

 

I know, I was there too before. Not that my T noise have changed, it is probably louder now than it was at the onset. It feels more quiet because I stopped caring about it. Yesterday I had fleeting T all day, happened like 10-15 times over the day, even if I was just moving my head. So yes, not saying I don't start worrying when that happens, I do. But sometimes we let our mind control us more than we should, if I was starting to panic over it, it'd be feeling like crap. I just kept telling myself that "no you haven't been exposed to anything, you have slept bad for a week now, so this will pass". Just woke up and sitting at work, I guess I'll find out if it keeps fleeting or not. My T fluctuates during the afternoon. I get bothered by it from time to time, but still, if I had gotten here and had people tell that I would get used to it, I'd still be in my panic-mode self.

 

Hi Eric, I've seen this idea before but I have a different perspective on it. I imagine what you say will be true for a few people since different folks can react to things differently. But what I've seen people actually say has mostly been that they found Tinnitus Talk helpful.

I remember visiting here when my tinnitus was still mild. Reading reports from folks who had it bad actually made me feel better that mine did not affect me to that extent. I clearly remember reading people saying they needed fans on to sleep and things like that. This made me feel lucky rather than scared because mine was clearly not so bad as theirs. With hindsight I even wish it had made me much more scared, 'cos then I might not have gone on to take the risks that ended in me getting the much worse tinnitus that I have now.

A lack of information is a scary thing when you get a new health condition, and newbs can get tons of information here, as well as not feel like they are alone with the condition. Also, the information they get is from people not trying to sell them something. There will always be some negative emotions expressed somewhere where people go for support - if people cannot express their problem then they equally cannot get appropriate support with it from amazing people such as yourself, Glynis, Billie, etc. The two things kind of go together - negative feelings and support to deal with them.

Some people take longer to get there (or maybe will not get there at all), but it seems problematic to suggest that those people who are struggling the most are harming or holding back the majority. Historically, that is a dangerous idea. I hope you don't mind me sharing my thoughts on this - I agree with most of what you write, this thing just bothered me a little.

 

Haha. umm no we don't all walk the same road, not all tinnitus is the same, this statement is about as ignorant as it gets.

 

Indeed - it's the same as you would say one type of pain sensation is the same as any else pain sensation. We know that's not true. There is mild pain, moderate pain, severe pain. Just like there is mild tinnitus, moderate tinnitus, severe tinnitus.

 

Uhm, first of all when I saw "we walk to same road" it means "we all want to get better, so we start from being scared/anxious to become better". So please, don't go and put words in my mouth.

 

Ok, now you're overdoing it. You don't want to be dismissed because you have it mild and fleeting, so don't dismiss others who don't have the same luck.

Again, I'm very happy your case isn't that bad. I'm glad you're feeling better and hope you keep up this way. Having said that, my case is of the "severe" and "intrusive" kind as described by different doctors. Let me give you an example: A couple of nights ago I was at this busy restaurant with my cousin, trying to distract myself, and the damn T kept showing up and annoying me. It didn't matter how much acceptance, mindfulness exercises, breathing, etc I did, that night the only relief I got was going to bed and hoping to wake up to fight another day. There are a lot of people who come to this site and say "I can only here it in silence", "I hear it from time to time", well, I'm happy for them, but that's not the case for everyone.

You don't know what it is like to have 24/7 blaring sirens for months on (I also got H, hurray for me), you don't know how it is to have your life completely wrecked because you can't concentrate for months on, so don't talk like you do. I tried to do it alone for months on, than got a CBT therapist to help me. Other people on this forum get TRT, Neuromonics and god knows what, all hoping to get better.

I know that there are people on this forum who got it worse than me - people who got it louder, or changing noises, and so on - just notice that people here volunteer to be subjects on academic studies, drug trials and even try off-label medicines. Just imagine the amount of suffering and annoyance it takes for one to go this way. So no, it's not "acceptance." It may be part of the deal, and for some people just doing a little bit works, but to a lot of people habituation isn't that easy. Please respect that.

Having said that, I'm truly sorry this thread got hijacked by this kind of discussion. I'm glad @Steve is attending TRI's meeting. I was into research (in a completely unrelated field), and know how hard it is sometimes to find the right "subjects". Even taking account of the fact that we may be the worst case scenarios of the Tinnitus population, we are a very diverse groups from all walks of life and every corner in the world. Having access to this group may help some researches move on with their understanding. I hope it bears some good fruits and wish you a nice trip!

 

Thanks. It is nice and close, 90 minutes drive, so in a perfect location to be able to drop by. I don't get to make a holiday out of it but I am looking forward to getting there and making representation.

We have a great pool of people for research, there were actually a lot of different types that responded to our previous surveys and it isn't just the worst cases. You'll know from your background how important it is to have a representative group, I really do believe we can achieve that. Time will tell of course.

 

I haven't said that it easy. Jesus. If you read everything I wrote before you'd understand what I meant.
Whatever, if you want to keep putting words of what you think I meant or didn't go ahead. I don't have any motivation to keep discussing about things I never said. I have nothing but respect for people here. I try help out where I can. Apprently it has to be in the "correct" way, whatever that is.

 

@Zug

Totally agree with you about habituation...my therapist and doctors (the 1st activity of my neurologist is hypnosis) said I can't have habituation because of H/fluctuant T in right ear/and permanent headache can't permit this. My neurologist is ok to try Trobalt in off label...whereas he refuses giving any drugs normally...