The Benefits of Staying Away from Tinnitus Related Websites?

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

 

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.

 

Tomorrow will be better Karl.

 

"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!

 

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."

 

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.

 

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.

 

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

 

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?

 

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.

 

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.

 

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.

 

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.

 

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

 

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.