The Benefits of Staying Away from Tinnitus Related Websites?

[Markku]

You all probably know Jim, who's been a member here from day 1 and later on became a moderator. One of my best online mates whom I met on Tinnitus Talk and who has helped me and many more here in all ways imaginable.

Thing is, Jim has now stopped frequenting websites related to tinnitus. He can chime in and tell the details himself if he wants, but let me in short just say that once he stopped the daily routine of going through tinnitus sites (incl. Tinnitus Talk), his tinnitus seems to have been diminished to an all-time low. Yes, consider it anecdotal, but still, this made me think...

When someone first acquires tinnitus, most often they look up information on the internet, come to the forums etc...

That's all good, and info sites and forums are brilliant for that.

But. Where should one draw the line?

I guess it depends on the person.

Some might obsess over their tinnitus more if they browse tinnitus sites day in, day out. Who knows, maybe habituation might take longer?

Maybe it all happens naturally to many. Those who have successfully habituated and can now continue their daily lives almost like as before, probably stop visiting tinnitus sites without even actively thinking about not visiting them.

Back to Jim. Maybe it's a coincidence. His tinnitus could have diminished even without cutting time spent on websites like this. Still, there's a real connection there, timeline-wise. I think spending less time on the forums might have at least helped.

From the bottom of my heart I'm so happy for Jim.

I'd say the majority of members of tinnitus forums can be put in these two categories:

• Those who have had tinnitus for a longer time (and not necessarily anymore as bothersome as in the beginning), but who are interested in the community aspect, supporting others and sharing and looking up information, keeping up to date so to speak
• Those who are new to tinnitus (or who've had tinnitus longer, but were already habituated to it but then for some reason it became worse and now back on mind 24/7).

Many times it immensely helps a new tinnitus sufferer when they find out that it doesn't kill you, it can get better (but also need to take care of protecting your ears), and people who've had it for years and years are still around and kicking. And of course finding ways to cope is equally important. Thus this kind of new tinnitus sufferer might stop visiting tinnitus sites on their own after a while. Actually I think most of Tinnitus Talk's members have been ones like that.
It's the minority who sticks around.

Anyway, if you are going away for a nice vacation, just for the sake of it stay away from tinnitus sites. If possible! Of course if you face tough times, then do whatever you think is best! But usually a vacation is a great time and place when you don't even want to be online, so testing this hypothesis "Cut your time spent on tinnitus sites and see how your tinnitus naturally improves" is easier to do in that setting

PS.
I'm interested in research news, past and current studies, different new approaches to treatment of tinnitus and also love contributing here whenever possible, so don't worry, Tinnitus Talk isn't going anywhere. And I have seen there are several folks here like me, most of the regulars I think? However, it's impossible to say whether my tinnitus would become less of a problem if I stopped visiting tinnitus sites altogether. Without actually having tried that.

But what are your thoughts? To me it makes sense. Many people have reported that they pay more attention to their tinnitus while on tinnitus sites.

 

[DezDog]

In the early days when I was getting used to the tinnitus, I thought that each time I came to this site my tinnitus would get louder. It makes sense; is there a better way to make you think of your tinnitus?! Everyone should *stop* thinking about their tinnitus. Find a way to cope, then get on with your life. You'll know about the cure when it happens.

However, these sites and forums are invaluable. There's no doubt in my mind that the personal recovery stories, and the reassurance that there is real research taking place were key in helping me get through this.

I think if you feel you don't need to come back to these sites, then this represents a very high level of recovery in itself; we should all strive for this. I would only say, please leave your story before you do!

Jim definitely helped me with his story and the sound files he shared.

I'm still here because I'm curious about the research, and I want to help others if I can. In my darkest moments, I promised that if I got through this, I'd give something back, or pay it forward, however you want to look at it.

Markku - I hope you're not feeling abandoned or unsure about the value of this site. It's a great place.

DD

 

[Karl]

Markku -
Excellent insights about the makeup of the group.

Lately I've wondered about the statistics of how often people blog. Having read this website about 6 months, I've observed that people come and go. I've read very passionate, intellligent comments from some people. Then they're, sort of, just "gone". Like whatever happened to....? Ok, let's not get too specific here. But some people just stopped, and I would like to hear what they have to say.

This has been a bad day for me. I enjoy that this website allows me a way to get my ideas together.

 

[DezDog]

Tomorrow will be better Karl.

 

[Paul D]

"Those who have had tinnitus for a longer time (and not necessarily anymore as bothersome as in the beginning), but who are interested in the community aspect, supporting others and sharing and looking up information, keeping up to date so to speak. "

I'd consider myself as one of this type, although I wouldn't necessarily say it's always less "bothersome as in the beginning;" I still get crazy over it, just not as often. My best relief now comes through focusing on other endeavors or concerns, of which I have been fortunate of late to have more than usual (new job, less stress, more sleep, new interests, etc.). While the tinnitus comes back with a vengeance on a regular basis, I think constantly exploring the issue online can be detrimental to my own well being, keeping the problem at the forefront. As I have to live with it while no cure or effective treatment is in sight, tweaking my own coping mechanisms offers me the best relief.

But I don't want to completely lose touch with this site - it has proven to be the best outlet, information source, and sharing forum I've found.

And I hope at least a few of my occasional posts help others as much as posts and discussions by forum members (and Head Honchos!) helped me the first months after I joined. Thanks to you all!

 

[jazz]

That's great Paul! Habituation is a slow process and for many it is ongoing. But moving ahead is the best thing. I think great sites like Tinnitus Talk give us hope; but we have to balance that with "getting on with our lives." You're right that "tweaking...(your own) coping mechanises offers... the best relief."

 

[Tenna]

Sometimes when I read Tinnitus Talk, I find myself so focused that I don't even pay attention nor hear my own tinnitus It's all in the focus.

 

[object16]

I find it to be really nice to be able to connect with other people that have what I have - it is helpful, and gives positive encouragement.

Positive attitude is important and essential, sometimes that is the only thing keeping us going, and slowly but surely we gradually learn to cope, or train our brain to habituate, or whatever it is, but time is important, and time spent on Tinnitus Talk is really useful - I get a lot of tips here, and that helps me in my personal struggle.

 

[Zimichael]

Markku... I'm new here of late and wanted to thank you for creating or organizing or hosting (not sure yet about all the details) Tinnitus Talk! It is really great and a major shortcut to my requirement of keeping abreast of tinnitus, seeing as I keep getting zapped... and hoping for a cure, etc., etc., etc.

In time I will hopefully get to know a few members better by exposure etc. as am pretty lonely these days (actually the reason I Googled to see if any tinnitus boards existed) as my tinnitus/hyperacusis combo keeps me pretty close to home and isolated.

Anyway, many docs have noticed that: "Michael you seem to be about the most un-placebo patient I've had"... I don't seem to get affected by much unless it's the real deal "affecting it". So yeah, noise will freak me out and make my tinnitus worse, but not reading about it. I already know it's there as it's so darn loud. Actually, I've only touched the surface of the research aspect of this website so intend to be on it a lot more, and it may actually help to be exposing myself to more tinnitus info... But I do get tired of just interacting with the world on a screen, so that is more my issue regarding "boards and websites".

Again... THANK YOU! And I hope your curiosity and such does keep you on board - though a cure would be even better of course, then none of us would need it. There would just be a big banner saying: "CURE - GO HERE!"

Take care... Zimichael

 

[Kathi]

I've seen where some members are backing away from the board in order to aid habituation. Is this really necessary? I find such comfort here, knowing I'm not alone and we can share our experience, strength and hope as well as get support when we need it.

I think I am on the road to habituation--would leaving the board facilitate that?

 

[Martin69]

Kathi, it is the same for me. It makes no difference regarding tinnitus annoyance or loudness being here or being away.

Therefore it is better getting support here instead of complaining at family and friends.

 

[Kathi]

Kathi, it is the same for me. It makes no difference regarding tinnitus annoyance or loudness being here or being away.
Therefore it is better getting support here instead of complaining at family and friends.

You are right --It is better to get support here. Family and friends mean well but can't really understand. Even those I've met at work with tinnitus don't know what we go through-to them it wasn't a big deal and they habituated almost immediately.

 

[Karen]

Welcome back, Kathi! Yes, I know what you mean about other people at work not thinking tinnitus is a big deal. That's because theirs is probably a milder form of T than ours, and it was fairly easy to habituate to it.
Believe me, I know. I've experienced both worlds now --- at first, I had mild tinnitus, and I had habituated to it, without any problems. Then, four years ago, my tinnitus became severe, and I am still working on habituation. It's a different ballgame when you have severe tinnitus, and other people just don't understand that.

Lots of great communication and support here on this forum. Glad you're back!

 

[LadyDi]

Hey @Kathi welcome back! I missed those bewitching eyes.

I am not sorry I took a break earlier this year -- like you, took about a month. But also like you, I decided the benefits of being here outweighed the downsides. I think it's different for everyone.

Yeah, it's hard not lurk... because we miss our Tinnitus Talk friends. As @Karen said, this forum is a place where you know others will understand your bad days, and it feels good to help others when they are having a tough time.

 

[Kathi]

Welcome back, Kathi! Yes, I know what you mean about other people at work not thinking tinnitus is a big deal. That's because theirs is probably a milder form of T than ours, and it was fairly easy to habituate to it.
Believe me, I know. I've experienced both worlds now --- at first, I had mild tinnitus, and I had habituated to it, without any problems. Then, four years ago, my tinnitus became severe, and I am still working on habituation. It's a different ballgame when you have severe tinnitus, and other people just don't understand that.

Lots of great communication and support here on this forum. Glad you're back!

Thanks Karen for the welcome back. I really missed all but you especially, as you are always supportive and kind. (((Karen))) --that's a hug.

 

[Karen]

Awww! Thank you, Kathi. I'm glad I've been able to assist, if only to provide moral support.

I'm glad you're going to be able to take some time off from work in September; it will help you a lot. Stay busy, and enjoy the down time!

Hugs,
Karen

 

[Venryx]

Just thought I'd mention that for me, I didn't go on any forums or the like for the first year or so with tinnitus, and the tinnitus severity/ignorability was not any better than it is now.

In fact, if anything I think it's gotten better since finding and actively reading on these websites. It brings me comfort seeing other people who understand and also wrestle with the issue, and lets me free up my mind to think about other things. Otherwise, I just compare myself to the people I see without it, and my past self, and it's hard to not feel like I've been cheated out of something and have lost my opportunity for immediate-level happiness (or the more thorough forms of peace/rest, anyway).

With seeing other people having the same problem, I don't feel so disadvantaged anymore, and that makes me be able to not focus on it so much.

 

[glynis]

Tinnitus Talk can accommodate everyone!

• Suicidal
• Lonely
• Emotional
• Scared
• Struggling
• No support around them
• Don't understand what's happening
• More aware
• Mild to severe tinnitus patients
• All sub categories of tinnitus
• Newcomers
• Helpful supportive members
• Moan and rant and negative
• Positive and uplifting
• Research
• Own tinnitus journeys
• And any others I have missed who come and read or post

We have a fantastic team of managers, directors and moderators here!
@Markku and @Steve who spend their free time hours day after day behind the scenes and who do it without any recognition for their fantastic work.

I would like to think everyone feels proud to be a member of Tinnitus Talk and respect the forum too.

Love glynis x

 

[annabel16]

I am very grateful for this forum. I've found a lot of great ideas and supportive advice, found people whose struggles I identify with and who understand things about me that my closest friends and family cannot, and also discovered a lot of products and techniques not to bother trying based on the reports of others here. With so many useless products and false advertising it's nice to find out from others what to try/not try.