Hi, I'm from the UK and Want to Offer Forum Ideas

[tomm]

Hi all,
Been lurking for almost 2 weeks - this is by far the best resource on the net, full of kind, supportive and intelligent people.

My story is that I went out to a birthday on the 11th, 11 days ago - loud samba band played. Hurt while in the club, now I have noise induced tinnitus. Medium volume in both ears. Right still has a 'full' feeling so probably worse damage in that ear. Once is enough kids!

I was distraught and suicidal the first week. Asked GP for prednisolone at day 3 and was turned down. Wonder if that could have helped.

First day back at work today. I've been careful not to encourage the anxiety and am going through the motions of my life. I can work, but there is a constant background conversation with myself still saying that I can still hear it while having conversations and working.

I'm on the AM-101 trial in London and get my first injection on the 3rd of Nov 2014, just over 3 weeks after the event. I know it is 40% likely to be placebo and that I have a 50% chance of some result if I receive the real thing. I will be offered the real injections 3 months after this trial.

Some notes from reading the site for 2 weeks:

1. There should be a sticky post or something that says "READ THIS FIRST", tells the person that this is not the end of the world and what medicines to ask for that are useful straight away and with some supporting evidence to show to a doctor.
   
   
2. A big central list of what people here have tried and what has worked. Something like CureTogether. I had to sit down and trawl through the forums to find ideas for supplements and treatments and then search the forums and the net for their efficacy. Seems like there are a few types of tinnitus causes so maybe treatments should be grouped like that. A list of forum members who have participated in trials and whether it helped as well. Maybe the admins can give it some attention.
   
   
3. A yearly 'census' that we can participate in that rates our tinnitus volume and the impact it has. It would be nice to see even an anecdotal graph that shows how people here have rated their tinnitus and reactions to it as time has gone on. If you want to add monthly or weekly data that's cool too. I think this would help people stop panicking and asking if it goes away.

I'd donate to see any of the above implemented.

After AM-101, I'm interested in the Autifony trials but have started to make peace with the fact this is how my life is now. We are not invulnerable, and that's OK. It takes all sorts to make a world.

 

[jazz]

@tomm

Hello and welcome to Tinnitus Talk!

Just wanted to say I enjoyed reading your post and wish you the best of luck with the AM-101 injections. You're so early into having tinnitus, I feel confident the injections will work very well for you. But, of course, keep up posted! We all care.

About your suggestions, the first two are being implemented in the new website, tinnitushub, that is being developed. A yearly census idea, however, is another idea that might also be useful for the site. Thanks for your input!

Please feel free to donate! We appreciate it. The site is going to be fantastic. Tinnitushub will be a knowledge base for tinnitus sufferers and a place to share tinnitus success stories.

Here is the link to the recent Indiegogo campaign, where you can learn more about tinnitushub. Please note the site's name was changed a few months ago, but everything else remained the same. You will love the new site.

https://www.indiegogo.com/projects/...onsible-supportive-inclusive-community-driven​

I look forward to reading more posts from you!