Ideas to Leave a Positive Impact on the World?

[Ed209]

I was much like @Bam and yourself back then. And I could never understand why there wasn't anything that helped. I didn't understand going to "professionals" who thought the problem was "ME". I was weak or whatever or OCD or on and on and on. And this did not help me at all. It made me feel worse.

I echo this one million percent. It can be torturous but many people do come through the other side and go on to live happy lives. I know this is the line that nobody wants to hear on here anymore, but it's true for so many people. By saying this, I am not trying to belittle your suffering; I am doing it to give you hope.

There is so much despair and pain in the world. A very therapeutic approach that can help is to channel your suffering into doing something positive for others. Small things like helping homeless people, or taking Christmas presents to sick children, etc, can really help us more than them. It replenishes our soul and gives us meaning. You'd be surprised at how much it can change your outlook on life.

 

[Leoglobe]

Hi @Eric N

Very sad to read this post but first thing, we all care a lot about you.

We are a family even if we all far from each other, we understand you and truly care about you.

Second thing, if I were you I would consider Frequency Therapeutics trial. These guys will be finishing their phase 1 in December. In January 2019 they are going to start their phase 2 and they are going to open up their trials to much more people. In their phase 1a and 1b they treated about 30 people in total but in their phase 2 they will need much more data and therefore they consider having trials all across the USA and not only San Antonio. You should give it a go, you live in Canada so you are not too far. I would do it but my hearing loss is not within the 8k range, it is higher.

I think that could be a good option for you and you will know what are the results in December and could apply for the phase 2 early 2019.

The MuteButton device should also be released soon.

 

[Starthrower]

It can be torturous but many people do come through the other side and go on to live happy lives. I know this is the line that nobody wants to hear on here anymore, but it's true for so many people. By saying this, I am not trying to belittle your suffering; I am doing it to give you hope.

Exactly!!! When I was on a support board back in 2002 - I hated people who would say usually in a mean way - oh yeah you will be okay. So I get this part really well. I just try to give parts of myself and why I am here today.

"I am doing it to give your hope".

My heart feels so much better when someone mentions that hope helps them.

 

[Jazzer]

Severe Tinnitus tends to remain severe
- IMNSHO

 

[Tinker Bell]

Severe Tinnitus tends to remain severe
- IMNSHO

How are we defining severity? The volume or the emotional response? Both are factors that can measure it. And both can be independent. There are forum members with severe volume but a mild emotional response and members with mild volume but a severe emotional response.

 

[Bam]

How are we defining severity? The volume or the emotional response? Both are factors that can measure it. And both can be independent. There are forum members with severe volume but a mild emotional response and members with mild volume but a severe enough response.

How can someone with seriously loud screeching in their heads 24/7 have a mild emotional response to that? How can they be so much tougher than the average person? I just don't buy it I'm afraid. If you don't believe me go ask the SAS if any recruits they've tortured with white noise in training have ever had a 'mild emotional response' to it. Or if any of them could have lasted several months or years.

 

[Starthrower]

How can someone with seriously loud screeching in their heads 24/7 have a mild emotional response to that?

Good question @Bam. I am kinda in tears right now because my severe tinnitus is beyond again.....but my reaction isn't "mild" reaction. I guess it is just hard to explain. After so many years I know how to tame my reaction. Well most of the time. It is there and yeah it sucks. It is just possible.

I have loud screeching brakes non-stop in my brain. I sleep when I can mostly about five or so hours. That is the hardest part. I have a couple of ugly scars from childhood. I see them every single day. The pain isn't there but the memory of it is.

Something I would never have believed or gotten really pissed off about reading during my first year with tinnitus.

I know you will get there. And you will look back or remember back to - now and understand.

 

[Leoglobe]

Hi @Eric N

From what I saw on clinicaltrials.gov it looks to be open to everybody, not only Americans.

For the hearing loss, from what I understood this phase will be open to different levels of hearing loss from mild to more severe as this phase will be focused on the dosage and efficacy for the different types of people. Keep watching the Frequency Therapeutics thread, we will know more in December.

And anyway apply for it for their next phase and like this you will know.

Watch as well the MuteButton thread, it looks quite interesting I am not that much into devices but this one sounds quite promising and this can let us wait until Frequency Therapeutics is on the market I would say in about 3 years.

 

[Tex]

Why are the heads of the charities not on TV talking about people like you?

The ones that put on some of the biggest charity events after huge disasters, such as hurricanes, floods, etc, are musicians. MUSICIANS ARE THE CAUSE of Tinnitus for most people!!!

 

[Ed209]

The ones that put on some of the biggest charity events after huge disasters, such as hurricanes, floods, etc, are musicians. MUSICIANS ARE THE CAUSE of Tinnitus for most people!!!

 

[Bam]

The ones that put on some of the biggest charity events after huge disasters, such as hurricanes, floods, etc, are musicians. MUSICIANS ARE THE CAUSE of Tinnitus for most people!!!

Yeah but that's only a part of the picture. 99% of people can endure normal exposure to loud noises their entire lives without getting permanent T. Make no mistake this is very rare. Don't believe the stats. I dont know about you but I don't have a single friend with this and we're all nearly 40 and have done lots of clubbing and concerts etc.

 

[Sam Bridge]

Yeah but that's only a part of the picture. 99% of people can endure normal exposure to loud noises their entire lives without getting permanent T. Make no mistake this is very rare. Don't believe the stats. I dont know about you but I don't have a single friend with this and we're all nearly 40 and have done lots of clubbing and concerts etc.

My dad (63), uncle (53) and grandad (91) all have tinnitus, makes me think it's genetic although I have been to so many gigs / nightclubs. Just have 1 friend who has it. Im only 29 as well..

I think it's not that rare to have mild tinnitus but could be wrong...

 

[Tex]

Yeah but that's only a part of the picture. 99% of people can endure normal exposure to loud noises their entire lives without getting permanent T. Make no mistake this is very rare. Don't believe the stats. I dont know about you but I don't have a single friend with this and we're all nearly 40 and have done lots of clubbing and concerts etc.

I cannot count the number of friends and relatives that say, "Oh I've had that for years, no big deal." And it may be true that they have a very mild form of it.

Thing is, I also had a very mild form of T for many years before the disastrous onset of high volume a little over ten years ago. Prior to that, every once in a while I would notice this very weak cricket sound in one or both ears, but only during the quietest of quiet times. This is probably what so many that claim to have T are experiencing.

It is those of us with very high volume of T that truly suffer.

 

[Bam]

I cannot count the number of friends and relatives that say, "Oh I've had that for years, no big deal." And it may be true that they have a very mild form of it.

Thing is, I also had a very mild form of T for many years before the disastrous onset of high volume a little over ten years ago. Prior to that, every once in a while I would notice this very weak cricket sound in one or both ears, but only during the quietest of quiet times. This is probably what so many that claim to have T are experiencing.

It is those of us with very high volume of T that truly suffer.

Ah the old 'I've got that mob'.....yeah funny how nobody mentioned it before. Yeah I was talking severe intrusive life damaging stuff

 

[Wolfears]

Ah the old 'I've got that mob'.....yeah funny how nobody mentioned it before. Yeah I was talking severe intrusive life damaging stuff

Most average people out there either never heard of Tinnitus, or they think that everyone has the same kind....
You know the faint hiss that their uncle Bob (or aunt Betsy) seem to hear sometimes when they are in a really quiet room (and are quick tell about their "Tinnitus" to anyone who brings it up).

No wonder most people think that Tinnitus is just a minor annoyance at best.

 

[Red]

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Donate blood as often as you can.
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