Anniversary

[Louise]

Well, tomorrow is the one year anniversary of me getting tinnitus. One year ago today I could still have stopped it happening. How many times I've wished I could go back in time and not go to the pub with the rock band. I very nearly didn't go.

Its been a year of pure hell. I know a lot of you have endured hell too. I'd like to say its improved, but the noise has actually got worse - a lot worse just lately as I've been exposed to a noisy office environment. Normal for everyone else but too noisy for my ears. I now have a noise like a jet engine, a rushing wind with a high-pitched whine in it.

For the newcomers - this getting worse isn't the norm, it gets better for most people, so please don't be discouraged by my experience.

Its very odd that I feel like I should do something to mark the 'occasion'. Wearing black clothing and a black armband sprang to mind I should just treat it as another day I guess but that feels wrong. Its been too massive an event to just pretend it isn't the exact day a year ago.

Oh well, just wanted to post at least to mark the anniversary that way.

Good luck with your own tinnitus experience everyone and I wish you all strength and of course a cure.

 

[inadmin]

hi, what noises were you exposed to in the office? did it go bad only after this exposure?

 

[Hudson]

We have to believe in the possibility of a better future, otherwise what's the point?

If it makes you feel any better, I don't even remember the day that concert was now, it was so long ago for me. I just know it was some time in January.

The significance of the day will decrease with time. Keep your chin up!

 

[Louise]

hi, what noises were you exposed to in the office? did it go bad only after this exposure?

It was a lot of people talking - it was a clearing in the middle of the office of about 100 people and there were 6 small meeting tables where groups had meetings. It was worst when all those tables had meetings going too. I didn't realise at first. It was a similar noise level to a busy restaurant and I either never go to those or else I plug my ears up. I got caught out as I wasn't expecting noise in the office. And yes, it only got worse after that exposure. When noise has made it go worse it never goes back down again. It doesn't 'spike' its always been a permanent increase.

 

[Louise]

We have to believe in the possibility of a better future, otherwise what's the point?

If it makes you feel any better, I don't even remember the day that concert was now, it was so long ago for me. I just know it was some time in January.

The significance of the day will decrease with time. Keep your chin up!

Swoon....

 

[jes]

Wel i also regret a mistake but you cant go back in time,you are my favorite chick if you can take it
i follow.suddenly the cure come i hope.

 

[Louise]

Aw thanks Jes x

 

[david c]

Had my first anniversary a couple of months back so I can sympathise Louise as it's not a great day. My volume level has fluctuated a lot too- getting louder over time. I find having maskers quite handy when it's bad (though I don't think they have much of a long term impact) so I would try to get them from NHS audiology if you can Louise - I know those audiology departments are being shockingly stingy these days and the BTA and their research cohort are trying to get white noise generators and sound therapy phased out altogether and replaced with "counselling". Good luck with it and here's to a better second year.

 

[Petloy]

My 1st year is a month and days away at August 1....I will post on that day too. -) Hey Louise, I too have the jet engine waiting to take off sound in both ears...

 

[Piper]

It was a lot of people talking - it was a clearing in the middle of the office of about 100 people and there were 6 small meeting tables where groups had meetings. It was worst when all those tables had meetings going too. I didn't realise at first. It was a similar noise level to a busy restaurant and I either never go to those or else I plug my ears up. I got caught out as I wasn't expecting noise in the office. And yes, it only got worse after that exposure. When noise has made it go worse it never goes back down again. It doesn't 'spike' its always been a permanent increase.

Hi Louise its strange how significant the date is when it started, I too remember, still trying to "live with it" but so hard, I got a white noise ear piece from audiology it helps when its unbearable, I haven't worked since it started, tried antidepressants but they scare the crap out of me, I have been trying to get a group together to meet up and chat as we all know what each one of us are going through, but everyone is too far away. Mine too through loud music. good luck. Avril

 

[Piper]

Had my first anniversary a couple of months back so I can sympathise Louise as it's not a great day. My volume level has fluctuated a lot too- getting louder over time. I find having maskers quite handy when it's bad (though I don't think they have much of a long term impact) so I would try to get them from NHS audiology if you can Louise - I know those audiology departments are being shockingly stingy these days and the BTA and their research cohort are trying to get white noise generators and sound therapy phased out altogether and replaced with "counselling". Good luck with it and here's to a better second year.

I have downloaded white noise on to an app, and play it through my phone all night, last night was the first night and I actually slept all night which is very unusual since I had this. Avril

 

[Karen]

Avril,

Thank goodness you were finally able to get some sleep! I hope the white noise continues to work for you. Sleep will make a big difference in your ability to handle this. Stay strong!!

 

[Louise]

Had my first anniversary a couple of months back so I can sympathise Louise as it's not a great day. My volume level has fluctuated a lot too- getting louder over time. I find having maskers quite handy when it's bad (though I don't think they have much of a long term impact) so I would try to get them from NHS audiology if you can Louise - I know those audiology departments are being shockingly stingy these days and the BTA and their research cohort are trying to get white noise generators and sound therapy phased out altogether and replaced with "counselling". Good luck with it and here's to a better second year.

So yours has got worse too David? Its not that common for it to worsen. I know mine is "Reactive" but isn't it then supposed to come back down? Mine never does. I am so tired of having to protect my ears all the time from normal noise. And that isn't why its gotten worse because I didn't start protecting them until after I realised noise was making it worse.

The NHS just makes me furious. They wont even spend £50 on us. They should be providing over the ear open fit white noise generators for us, never mind not even funding a £50 WNG machine. We are just not taken seriously at all. I've done their so-called "Counselling" and it was rubbish. I was virtually not allowed to talk about the tinnitus and the noise of it and just told to "Leave it be". Some counselling. They call it Tinnitus Management these days probably to distinguish it from TRT. So why aren't they funding proper TRT for us? Its just a joke.

Yes, I hope the second year is better. I wont feel the same way about the anniversary next year, its this first one, a sort of milestone.

 

[Louise]

My 1st year is a month and days away at August 1....I will post on that day too. -) Hey Louise, I too have the jet engine waiting to take off sound in both ears...

Hi Peter - it's a bad day indeed. I will watch out for your post. At least we all have each other

 

[Louise]

Hi Louise its strange how significant the date is when it started, I too remember, still trying to "live with it" but so hard, I got a white noise ear piece from audiology it helps when its unbearable, I haven't worked since it started, tried antidepressants but they scare the crap out of me, I have been trying to get a group together to meet up and chat as we all know what each one of us are going through, but everyone is too far away. Mine too through loud music. good luck. Avril

The date is significant isn't it? How could it not be. You did well to get that earpiece Avril. I bet its not an open-fit one though? I'm glad it helps you some.

Obviously you'd be better off not using drugs but sometimes people have to.

Markku told me that you are trying to get a group together but I live too far away

 

[jazz]

Louise,

I'm pulling for you to keep strong! Next year has got to be better.

You've suffered so much with tinnitus. You're proof positive why this disease is so important. For many people, tinnitus is more than "a little noise." It's about an insanely frustrating and terrible noise that you can't escape. I wish you could be a spokeswoman for tinnitus research. You're intelligent, articulate, and sensitive. You would offer great ideas based on personal insight.

LOTR's profile has a message that states: "Lend me your ear, and I'll lend you mine." I wish we could do that for health care professionals and medical policy wonks who don't believe this disease is important.

 

[Louise]

Thanks so much Jazz. This message means a lot to me. And it's nice for me that its come on this night - one year to the day since it happened.

You've summed up tinnitus really well and really succinctly.
I too have often wished I could let the medics, and in particular my doctor, have what I have for just 2 weeks. Although in my frustration I haven't thought it as nicely as that quote from LOTR, rather I have wanted to bash their ears with my fists until they do have tinnitus!!

I have no-one to ask why my T is getting worse. I know its noise that makes it worse but not why, what the mechanisms are, how bad it will get or what I can do about it. There is simply no-one in the medical profession for me to ask. That's where we're at we tinnitus sufferers, we don't even have anyone to answer our questions.
We really do need to get a voice somehow. Maybe when someone high-profile gets it then more notice will be taken.

 

[Markku]

This isn't a day of celebration. I never thought Louise would be worse off at the 1-year mark, but this unfortunately is the situation now.

I concur with everything jazz said.

I just don't want to believe it can endlessly get worse. We're all here rooting for you, and wishing for improvement.

The big bear is Tinnitus Talk and its members and you're the dog, being hugged and taken care of. That's how I interpret this picture.

We care.

 

[J M]

This isn't a day of celebration. I never thought Louise would be worse off at the 1-year mark, but this unfortunately is the situation now.

I concur with everything jazz said.

I just don't want to believe it can endlessly get worse. We're all here rooting for you, and wishing for improvement.

The big bear is Tinnitus Talk and its members and you're the dog, being hugged and taken care of. That's how I interpret this picture.

We care.

Let me second that.

Every one here, including Louise, is on my prayer list.

 

[jazz]

I have no-one to ask why my T is getting worse. I know its noise that makes it worse but not why, what the mechanisms are, how bad it will get or what I can do about it. There is simply no-one in the medical profession for me to ask. That's where we're at we tinnitus sufferers, we don't even have anyone to answer our questions.

We really do need to get a voice somehow. Maybe when someone high-profile gets it then more notice will be taken.

Louise,

Uncertainty is a major problem with tinnitus. We'd all like to know why your tinnitus is getting worse, why someone else's may be getting better, etc. It's not academic; it's real life and real suffering.


Yet, as you know, tinnitus research is still primarily descriptive. Imaging studies, for example, explain "what" tinnitus looks like instead of "why" tinnitus looks as it does. The difference between "what" and "why" is significant. "What" may lead to treatments, but only "why" will lead to cures. That's the reason, I believe, the bar is set low for successful tinnitus treatments. Of course, tinnitus is not the only illness where such standards exist. Success is defined much lower for some catastrophic diseases.


The good news is that the "why" (specifically, one "why" hypothesis) on acute tinnitus will start late clinical trials with AM 101. But chronic tinnitus is more challenging, and, I believe, is still in the "what" stage. That's because chronic tinnitus is also a brain disorder. And the brain is not well understood. But cures will come, perhaps in the next five-to-ten years. And effective treatments, like vagus nerve stimulation, are being perfected now.

Of course, five years might as well be twenty years for those, like you, who suffer deeply. That's why the latest technologies--from the best hearing aids to the latest neuromodulation techniques--should be made available to all people with tinnitus--but especially for those severely affected. We need an organization that would help procure these technologies as they become available so that need--rather than affordability--would be the main criterion for usage.

This is another area where an influential, strategic spokesperson might effect change. Look at what Michael J. Fox did for Parkinson's.

 

[Louise]

This isn't a day of celebration. I never thought Louise would be worse off at the 1-year mark, but this unfortunately is the situation now.

I concur with everything jazz said.

I just don't want to believe it can endlessly get worse. We're all here rooting for you, and wishing for improvement.

The big bear is Tinnitus Talk and its members and you're the dog, being hugged and taken care of. That's how I interpret this picture.

We care.

Markku that's absolutely lovely - thanks very much x

 

[Louise]

Let me second that.

Every one here, including Louise, is on my prayer list.

Thanks JM that means a lot.

 

[david c]

Agree with everything you say Louise. I know that although loud noise was not the initial cause of my tinnitus, the times it has got worse since have been when I've had even short exposure to relatively loud noise - I'm afraid the harsh reality for tinnitus sufferers is to try to avoid loud situations as far as that's possible and to have earplugs ever at the ready.

Agree with you about how useless the NHS is and how ineffective most counselling is - the reality is that there's not much that counselling can do beyond some early guidance. What's needed is real investment in long-term solutions and neither the NHS nor the BTA nor (apparently) the ATA are doing much about that at all. I'm glad I got my maskers from the NHS, but under BTA guidance and cutbacks I think they are phasing these out.

 

[Map]

Louise, I am with you in my mind. Your "anniversary" belongs to day of my birthday. Such a weird coincidence.
Mine T has got worse too and didn't improved since. But I still believe it will be better with time for all of us.

Be strong.

 

[Louise]

Thanks Map. I hope that time will help too.