Ideas to Leave a Positive Impact on the World?

[Eric N]

Sorry to post this kind of thing, but I firmly believe my battle with tinnitus will come to an end sometime in the near future, it has just progressed too far at this point. It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

Thanks.

 

[Striveon]

MuteButton is on its way and help is coming on our way. There is so much research going on. MuteButton can help relieve a good portion of your tinnitus. Hang on tight, you can do this :/

 

[Nanny chocolate]

Has anything else changed for you that is making tinnitus an even bigger monster.
It's so exhausting living with loud tinnitus and increasing hearing loss in my case.
Do you live with anyone, is there anything at all that could help you just now.
Empathically yours
Eve
@Eric N

 

[JohnAdams]

You've made it this far. Unless we are being hornswaggled there may be cures coming soon. Hold tight.

 

[PDodge]

Hey man, I'm here with you. Just three months after I got tinnitus it went from meh to WOAH fuck. I know it sounds like garbage and I don't know your history but have you tried therapy?

 

[Bam]

Sorry to post this kind of thing, but I firmly believe my battle with tinnitus will come to an end sometime in the near future, it has just progressed too far at this point. It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

Thanks.

I'm sorry man. Six years of this at a severe level. You deserve massive credit.

You also deserve a humane end. For you to have to take your own life to end this hell after 6 years of nobody offering you a cure or even some relief is frankly disgusting.

What's more disgusting is that nobody represents your suffering or even talks about it. Why are the heads of the charities not on TV talking about people like you? Talking about the hopeless torturous void of suffering that so many of us are trapped in.

I'm sorry dude, it's a disgrace. A total disgrace. I fully understand why you want to end this and i feel exactly the same as you.

Dogs. My money and house. It's all going to the dog charities.

 

[uae96]

Hey man, since you live in Canada you have access to great facilities for treatments.

Have you maybe tried asking for stem cells treatment?

Also consider yourself lucky that you do not have hyperacusis.

 

[Bam]

Sorry to post this kind of thing, but I firmly believe my battle with tinnitus will come to an end sometime in the near future, it has just progressed too far at this point. It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

Thanks.

Tell you what would be nice......If you and I and others who don't want to live with the torture of tinnitus could donate our otherwise healthy body parts to desperately ill children who need them.

If that option was on the table I would sign up tomorrow and I would feel f'in great about it. Like I flipped this tinnitus shit around and foiled its evil destructive plan!

 

[Bam]

Also consider yourself lucky that you do not have hyperacusis.

You can't base your future happiness on thinking about awful things you don't have.

 

[Ed209]

Sorry to post this kind of thing, but I firmly believe my battle with tinnitus will come to an end sometime in the near future, it has just progressed too far at this point. It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

Thanks.

I wish I could cure your pain and I want you to know that people here honestly care about you. What you have been through is brutal.

You could share your story with the world. Let people know what this miserable condition can reduce a person to. Of course, you may not feel up to doing this, but if you are, you could raise a significant amount of awareness.

However, your health must come first and foremost.

 

[another sean]

Have you considered stem cells like in Thailand where other members have gone and had improvements? If so, what was the end result of that possibility?

 

[RCP1]

Sorry to post this kind of thing, but I firmly believe my battle with tinnitus will come to an end sometime in the near future, it has just progressed too far at this point. It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

Thanks.

You deserve huge credit for making it this far Eric. I also have unbelievably reactive tinnitus which spikes for very little indeed... Examples have been an Ice Cream van which was about 200 metres away - an ambulance which was outside my work building and quite far away (I was inside the building) - It once spiked because the room I was sitting in was too quiet and the PC Fan was all the ear could hear. These spikes lasted weeks. I have not been to a dentist in 4 years as I know what would have happened - However this is not sustainable hence me knowing from early onset that my life was very much on a timer. I have crammed in an awful lot in the last 4 years...an awful lot.

Eric my heart goes out to you. You seem like a kind gentle soul.Know that I am in the same boat my friend. PM me if you want a chat.

 

[Michael B]

@Eric N
You are young and until viable treatment can be found please consider using the pain & suffering you've endured as a teaching tool for others; for those on the path to tinnitus and those who already have it.

People need to hear your voice, what you have gone through, what you have learned and what you can offer others. I know, because I'm one of these people.

Places like these, online support groups as well as local tinnitus support groups need to hear your voice.

You my friend can make a difference in someone's life. Don't give up on that thought.

 

[glynis]

@Eric N ,
Try not judge your future like it is now.
Reason-
I have been to hell and back with my severe Bilateral Tinnitus and Menieres and felt like my life can't go on like this.
My life now is better but tinnitus does remain but my feeling about it have changed but I do work hard to keep my mental health strong as so easy to drag you down.
One day we will get better items to help and hope a cure for some sub categories as their are so many causes of tinnitus.

Tinnitus can take away your confidence and self worth and cause low mood, we are not born with them and can with help come back and help you deal with your tinnitus head on.

Tinnitus is mental torture but try not call it a day with your life as we all need stick together and support each other and get others through the down times and no more lives shed to this terrible condition TINNITUS.

love glynis

 

[Greg Sacramento]

@Eric N Hold on - Two major causes of tinnitus are discussed in links below and some researchers like Levine and Shore think they are substantial reasons. Reversal of components within the cervical craniofacial temporomandibular and sub - occipital complex is showing to be a key area of focus. Relieving compression of sub -occipital nerves that places pressure within the entire upper body by stretching the neck or by simulation. They are focusing on what happens outside of the ears and before activity reaches the brainstem. In another recent link that I posted, it quotes that 43% of all with tinnitus has a direct connection to the above. Up to 80 - 85% have some physical input where some form of muscular and tendon stress took place.

Read the column on left side of this link.
https://sites.google.com/site/doctorlevinestinnitussite/home

One of many related support articles that I have posted.
https://www.sciencedirect.com/topics/neuroscience/suboccipital-nerve

 

[coffee_girl]

I hope you rethink your decision, I don't know how bad your T is, but I hope you find something in life worth fighting for. Perhaps there is someone you can talk to professionally about this?

 

[Wolfears]

Sorry to post this kind of thing, but I firmly believe my battle with tinnitus will come to an end sometime in the near future, it has just progressed too far at this point. It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

Thanks.

The strength of your character shines right through your post.
In your 6 years have suffered more than most people dying of terminal illness (not because they suffer less, but by definition their suffering is much shorter).
So here you are being brutally tortured to death by Tinnitus just like many others before you and you are still thinking of the ways to improve someone else's life.

I'm not sure how much you have left in the tank and unlike most, I will not advocate surviving at any cost.
Having been there myself, surviving without any quality of life is simply not enough.
You are probably aware of some ongoing trials, out of which the Susan Shore's device seems to be the most promising.
However the release timeline is less than clear at this point...
Either way, If I was in your predicament, I would try to hold off till more is known and make your final decision then (if you can find the strength).
I have a feeling that many members here are in similar situation

Should you decide to forge ahead with your plan regardless, you could maybe try to raise awareness about a horrifying condition that most people never even heard off, but for most of them, this level of pure evil is so inconceivable, they simply wouldn't be able to fully comprehend it.

There is a already short documentary out there following another brave lady by the name Gaby Olthuis, whom had decided to end the misery on her own terms..
That one should be mandatory to watch in every high school on the planet..but it isn't.

Also remember that you live in a country, where bureaucracy and the current belief system does not allow for you to experience a dignified exit with Tinnitus, so you might have to travel abroad and/or jump through some hoops.

I would advice you to think long and hard if you are about to do it yourself, because the very last thing you want is to get maimed or crippled on top of your Tinnitus, should your attempt fail.

Either way I wish you peace and the best of luck with whatever you decide.

 

[Nanny chocolate]

Hades TINNITUS with no let up. Extremely loud whale songs, somebody playing very bad piano up and down the scales endlessly, humming with a side order of gale force wind. 'Have a nice day!!!!' I don't think so.
No wonder so many of us despair and want an end to this. Other factors add to the mix depending on our circumstances, just the short straw draw.
Bitter? Moi? Trying not to be and so want other T soldiers to feel better.
Eve

 

[Bam]

There is a already short documentary out there following another brave lady by the name Gaby Olthuis, whom had decided to end the misery on her own terms..
That one should be mandatory to watch in every high school on the planet..but it isn't.

Agreed. But instead of being used to promote a cure and awareness of how bad T can get, she instead was dismissed as 'mad' by a disbelieving media, who understandably considering the bullshit representation we receive, think tinnitus is a minor annoyance.

 

[Wolfears]

Agreed. But instead of being used to promote a cure and awareness of how bad T can get, she instead was dismissed as 'mad' by a disbelieving media, who understandably considering the bullshit representation we receive, think tinnitus is a minor annoyance.

Agreed...and one can hardly blame them.
One quick browse through the Tinnitus Talk boards will leave no doubt that:
"We won't let tinnitus stop us from living", because apparently "happiness is a choice".

Why would anybody want to help such a content bunch of people, whom themselves don't think it is a big deal is beyond me.

 

[GregCA]

Agreed. But instead of being used to promote a cure and awareness of how bad T can get, she instead was dismissed as 'mad' by a disbelieving media, who understandably considering the bullshit representation we receive, think tinnitus is a minor annoyance.

I remember the documentary about her fairly well and don't recall her being portrayed as mad. I googled her name and none of the stories that came up dismissed her as "mad" either.

Do you have a source for the bolded words above?

 

[Bam]

I remember the documentary about her fairly well and don't recall her being portrayed as mad. I googled her name and none of the stories that came up dismissed her as "mad" either.

Do you have a source for the bolded words above?

Sadly Greg it's true. The clinic had its knuckles rapped for not properly evaluating her mental state and referring her to a shrink... and the media was aghast and called it a 'mockery' and a 'lifestyle choice' as if she had a wonky nose or crooked teeth.

https://www.dailymail.co.uk/news/ar...spatch-Holland-thousands-choose-die-year.html

https://www.bioedge.org/bioethics/d...has_knuckles_rapped_over_tinnitus_death/11301

 

[GregCA]

Sadly Greg it's true. The clinic had its knuckles rapped for not properly evaluating her mental state and referring her to a shrink.....and the media was aghast and called it a 'mockery' and a 'lifestyle choice' as if she had a wonky nose or crooked teeth.

https://www.dailymail.co.uk/news/ar...spatch-Holland-thousands-choose-die-year.html

https://www.bioedge.org/bioethics/d...has_knuckles_rapped_over_tinnitus_death/11301

I don't see her being dismissed as mad in any of those articles.

The first article is more controversial and "clickbaity", but that's to be expected from a tabloid.

 

[Hazel]

Agreed. But instead of being used to promote a cure and awareness of how bad T can get, she instead was dismissed as 'mad' by a disbelieving media, who understandably considering the bullshit representation we receive, think tinnitus is a minor annoyance.

I'm from the Netherlands, as was Gaby Olthuis. As you can imagine her story was featured quite prominently in various Dutch media outlets, and I have to say the coverage was very respectful. I cannot speak about media in other countries of course.

Sadly Greg it's true. The clinic had its knuckles rapped for not properly evaluating her mental state and referring her to a shrink... and the media was aghast and called it a 'mockery' and a 'lifestyle choice' as if she had a wonky nose or crooked teeth.

https://www.dailymail.co.uk/news/ar...spatch-Holland-thousands-choose-die-year.html

https://www.bioedge.org/bioethics/d...has_knuckles_rapped_over_tinnitus_death/11301

The Daily Mail is for idiots, even people outside the UK know that. It's hardly a reputable media source. Wikipedia determined its use as a reference as "generally prohibited, especially when other more reliable sources exist". In any case, the article reflects a general anti-euthanasia stance more than anything else. There's a lot of bashing in foreign media about Dutch euthanasia laws, which supposedly allow for "randomly" killing people, when in reality the euthanasia rules are very strict and there is a rigourous independent approval process for any euthanasia application.

As for the second article, this doesn't really raise any judgement on her case at all, it merely reports on the ongoing inquiry as to whether her euthanasia application was rightfully approved or not. As I mentioned above, the approval criteria are much stricter than often represented in foreign media. So any case apart from someone dying of terminal cancer or similar (i.e. they will be dead anyway in a year) will by definition fall in the 'grey area' of whether it meets the criteria or not. Hence, the reprimand to the clinic that carried out her euthanasia is in no way a matter of "trivialising" her suffering; rather, it's a reflection of how complex euthanasia law and regulation is.

So I definitely agree with @GregCA on this one. This is an exaggerated interpretation of the Gaby Olthuis media coverage.

 

[Greg Sacramento]

@Eric N You had started a thread asking "does anyone here to know interpretation of a cervical spine X-ray." "I just want to know if anyone could spot something that could contribute to tinnitus." "If so please comment and I will post them". No one answered.

I can read a XR Cervical Spine Complete. If you wish, post the views. I think that's it very possible that something can be found, which could be fixable and something for your doctors to consider. From your RX, I may be able to make notation with possible indication to - stress to muscles, muscle spasms, and pressure to different nerves, and sub occipitals -occipitals.

My reasons: You mention that you have normal hearing - 2 audio grams. You worked as a software developer which could mean neck posture stress.
From your posting history - "eyelids the buzzing would react to that by temporary intensifying." - "Bending my neck down also seems to temporary intensify it."

Questions: Did you have muscle tightness or spasms with back or neck - days or weeks leading up to onset of tinnitus?
Did you ever have an injury to neck or back in a fifteen year period before onset of tinnitus? Did you have any dental work done prior to tinnitus onset?

 

[Bam]

@Hazel @GregCA

Look 'mad' was maybe an inappropriate word. But her mental state was questioned. Fact.

Anyway this has gone off topic and that's my fault. @Eric N I apologise. I hope you find some peace one way or another.

 

[Eric N]

@Eric N You had started a thread asking "does anyone here to know interpretation of a cervical spine X-ray." "I just want to know if anyone could spot something that could contribute to tinnitus." "If so please comment and I will post them". No one answered.

I can read a XR Cervical Spine Complete. If you wish, post the views. I think that's it very possible that something can be found, which could be fixable and something for your doctors to consider. From your RX, I may be able to make notation with possible indication to - stress to muscles, muscle spasms, and pressure to different nerves, and sub occipitals -occipitals.

My reasons: You mention that you have normal hearing - 2 audio grams. You worked as a software developer which could mean neck posture stress.
From your posting history - "eyelids the buzzing would react to that by temporary intensifying." - "Bending my neck down also seems to temporary intensify it."

Questions: Did you have muscle tightness or spasms with back or neck - days or weeks leading up to onset of tinnitus?
Did you ever have an injury to neck or back in a fifteen year period before onset of tinnitus? Did you have any dental work done prior to tinnitus onset?

I will update the other thread, thanks.

And thanks to all for your support, I read all your messages, fingers crossed something will come for us soon enough

 

[GregCA]

Look 'mad' was maybe an inappropriate word. But her mental state was questioned. Fact.

It seems natural and healthy to question someone's mental state when they go down the euthanasia path. It's unrelated to Tinnitus & Hyperacusis though: it's simply related to requesting euthanasia.

 

[Tinker Bell]

It seems natural and healthy to question someone's mental state when they go down the euthanasia path. It's unrelated to Tinnitus & Hyperacusis though: it's simply related to requesting euthanasia.

Exactly. A mental health evaluation is part of the process for individuals with a terminal illness who are requesting physician-assisted suicide. At least this is a guideline under the death with dignity act. The purpose is to both determine mental competency (that it's the individual's choice) and ensure they do not have a treatable mental illness that is influencing their decision.

 

[Starthrower]

It has been a very hard 6 years indeed and I deserve credit for making this far, but surely this must end.

@Eric N no it does not have to end anytime soon for you. Making it this far is incredible. I have been severely affected since 2002. And in those first six years so many horrible things took place in my once privileged life which took me on a different path where I was needed and made changes for others with tinnitus.

But before that happens I would like my life to have had some kind of positive impact, any ideas? Maybe donating to trust worthy charities? Or a worthy cause?

If you are able - for me the best donations - are to this site on Tinnitus Talk. I believe this is going to really help many many people for years to come. Not only because of this support site but the work on Tinnitus Hub and those that are so active for tinnitus awareness and making real changes.

I will be donating to Tinnitus Talk before the end of the year to help offset costs for those who travel and spend personal time like this last event.

You are certainly not alone @Eric N. The despair is beyond understanding. But, I made it and still live life.
Make your life matter by not giving up.

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 took actions that helped me. Hypnosis and meditation therapies. Everyone is different but using what I learned somehow made me lose that despair feeling. Music therapy every single day.