My Dearest Tinnitus Sufferers — I'm Torn Apart — I Want to End This Waking Nightmare

Is it not all about funding grants investors, and manipulated data to obtain $$$$$$?

 

https://list25.com/25-famous-predictions-that-were-proven-to-be-horribly-wrong/

You may well be right Mr. Bourne. Who knows? But I'm really tempted to add your prediction at number 26 on the above list. I hope you don't mind.

 

Sensorion:
Acute
Regain:
Sucks compared to fx322
Novartis:
Works, sucks compared to fx322.
Decibel:
They have not announced anything except a prophylactic
Otomagnetic:
Just a delivery method.


The reason I say the other 2 suck is because they are just focused on growing hair cells. Fx322 does more than that. It maintains the pattern, and divides supporting cells.

 

Damn did you see this?

"The procedure involves going down the ear canal and detaching the tympanic membrane (ear drum) to reach the cochlea. A laser is used to create a hole in the cochlea to deliver the CGF166. Remarkably, it only takes 30 minutes and the patient is sent home the same day."

https://www.hearinglossjournal.com/cgf166-latest-news/

Egad, fx322 better friggen work!

 

You are being very black and white. You can’t say it’s the only one when there are other companies out there trying to restore lost hearing. You are spreading misinformation and artificially raising people’s expectations before we even know anything about its effect on tinnitus.

It’s cool to be excited, but you need to calm down on the cure front, at least until we see what it can do for tinnitus. This will be quite a while away yet and certainly not 6 months.

 

I just we hope get this sorted, one way or another. Bi-model for some help in the mean time if it all works

 

Like what? Quote me specifically. If you can't then you owe me an apology.

 

‘Frequency Therapeutics patent they have stated that their methods are going to also treat Meniere's disease and dizziness and vertigo. I have no clue how but it's in the patent and you can't just patent anything without some kind of evidence.’


‘It is the ONLY thing in the universe right now between here and eternity that has any chance of delivering us from tinnitus hell.’


I can’t be bothered to go through your post history to find all your inaccuracies, but you have frequently told people that we will find out if FX-322 works in December, which is not true at all. It will likely be a long time until we find out how FX-322 affects tinnitus.

I just think you are getting far too carried away. Some users may read your posts and believe there is a known cure out there that we are being denied access to, and all because of the FDA, which isn’t true.

 

That's a lie. I've only said that they, FrequencyTx, will know. And they certainly will.

I have said repeatedly that they will probably only report the safety endpoint and that we should try and ask them about efficacy data. That's been my entire point about advocacy.

 

It is true. I legitimately believe this and tell anyone I know who will both to listen to me, even if I sound nuts. I am freaking nuts. These governing bodies do not have our interests in mind.

Especially after that American Tinnitus Association person went on TV and downplayed our extreme suffering... I was convinced there is a conspiracy... really, that proves it. If that wasn't the proof there, then that person is total dunce.

I mean how can the head of the association representing this torture which is inching me closer to sweet suicide send the message that it's no big deal and it fades... I hope nobody quotes me those bullcrap studies and numbers... I still have tinnitus 3 years later, and nothing triggered it. My dad fires guns, was in the army, is old, and still goes to Metallica concerts. No tinnitus, not to my level! F***!!!!!!!!!!!

The FDA/ATA/BTA either know something, OR they are deliberately derailing legitimate attempts to cure our suffering and forcing us to funnel our cash to useless, and I mean f*****g USELESS nonsense like TRT-Jastreboff (#scam), hearing aids, homeopathic bullcrap, antidepressants... "tinnitus clinics"... I am absolutely convinced the FDA is tied into these things...

Sorry, but the days of "get used to it", "you'll habituate tee hee" are over for us

 

John, they won’t know what effect FX-322 will have on tinnitus in December. Remember we are a Tinnitus and hyperacusis forum.

You are making huge leaps that the hearing loss they can recover, if they can, will convert into reducing tinnitus in the brain (after the maladaptive plasticity has taken place).

You are making far too many assumptions here, buddy, and as we know, assumptions are the mother of all f*** ups.

 

Yes they will. That is, unless all 16 participants had SNHL without tinnitus.

I'm curious as to what you're basing your statement on.

 

I'm convinced someone people want it to fail... so we can keep going back to gingko biloba lol... right?

Get used to it bro

 

John, you cannot prove it’s efficacy for tinnitus with just 16 people. How many of the test subjects even have tinnitus? And where is this reported?

Have Frequency said they will review the effect it has on tinnitus in this phase?

They are primarily testing the safety. Whatever data they accumulate, good or bad, they will have to further prove the concept in phase II; that’s how all drug trials work.

You are trying to get access to a drug that is owned by Frequency Therapeutics. Do you think they would let you interfere with their studies of this drug? Forget about the FDA.

You are essentially telling people that we all need to band together so that we can get access to this drug (which has no data about it’s effect on tinnitus), but it will never happen. I’m not sure how else to break it down to you. It will never happen.

Am I on my own here or what?

 

I would love it to work for both hearing loss and tinnitus, why wouldn’t I?

Some of the stuff I’m reading on here lately, though, is way out there to the point that we are leaving reality.

 

Sadly you’re right Ed. We are the most fucked people in all of fuckedville and nobody gives a fuck or cares about unfucking us. Which basically leaves us well and truly.....fucked.

 

The day tinnitus showed up in my life was the day I stopped living in reality. There is no reality, that's the past. I don't live, I just exist.

I cling on to whatever morsels of pitiful hope I can get.

 

Spot. On.

 

Allan
I know it is tough, but time is the key please try to hang on . Stay strong for your family, they need you. Something will come out soon to help us all, have hope and faith. God blessings!

 

Well, back from the cliff top again this afternoon. Wrote out four goodbye please forgive me type letters.

Obviously haven't gone through with anything. Just waiting on an Archangel to show up.

Tinnitus was that bad today I just had to get out of work. Annoyed at myself for being a full blown chickenshit.

 

Does your wife work? You need to take some time off your job and focus on yourself

 

Only part time and not enough to sustain our outgoings Coffee Girl.

Normally I'm not too bad at work but on Fridays people get excitable so they get louder and that's on top of the sneezing and coughing and general loud blabbing and complaints about nothing big in their lives like having to wear glssses being a 'nightmare'.

 

@Allan1967 keep fighting bro

 

Allan,
Try to stay strong. As I have said before you have a lot of people that need you and love and care for you. It will get better. As I have told you in this thread previously I am going through the same issues. I am now at week 10 of a random spike. I have been doing several different things to get better without much luck. Today is the first day I have felt some relief after about 10 weeks. Like myself, you have put yourself in a vicious cycle of stress and anxiety. Even if this spike doesn't subside, though it probably will, there is hope coming. Spend some quality time with your family this weekend. Remember what you are to your family.

 

Allen it can only get better from here. Can you at least please wait for mutebutton?
There is hope.

 

Perhaps tell your wife you need some time off, she needs to carry the load for a little while until you are mentally where you need to be. You clearly need help and work is making things worse. Take some time off (even if it is a week) to work on yourself. Go to the beach, go on a road trip, go sit under a tree. Get away from your family and focus on loving yourself a little bit. You seem like the type of guy that does everything for everyone else and not enough for yourself, that needs to change.

I don't mean to be rude, just my opinion

 

@Allan1967

Hi Alan,

Lots of folk telling you to hang on for your family - It gets to a point where that becomes incidental.

I have been having a spike for 9 weeks - caused by loud scores being roared through a speaker.

Its my first setback in 4 years

I am in the same boat ... All I care about is getting the noise to improve.

Today after 9 weeks of hell I have noticed some small improvements.

Things could settle down again Alan.

I appreciate the work situation isnt ideal and the pressure on you is enormous. However things can sometimes swing back your way.

Mutebutton is coming and I'm going to try it. We may be block buying a few so you may get your hands on one soon enough..

Keep in mind that Tinnitus isnt fixed - Its a moveable thing - It can get better... Not in terms of the sound going to zero but te manifestation of it can change....

All the best

R

 

@Allan1967

One last thing Alan I wanted to say. Let the guilt go .. This isn't your fault. We all got dealt a terrible hand here.

Take the load off and if you are stop blaming yourself - You've done great to make it this far.

Just hold on a little longer and take some sick leave from work

Check out the sick leave policy in your place - some places pay out up to a year of sick leave.... make sure you know the policies.

Also if you are Unionised in your company have chat with your regional officer and see if they can do something for you aswell in terms of representing you to your employer....

Also check if you have Permanent Health Insurance as part of your pensions package - This can pay you a wage indefinitely

There may be more options there than you realise - Also look at taking a mortgage break if available.

you need time off right now - maybe a few months...

If only we had some billionaires on the forum - Where are all the T affected Billionaires....?

We could start some benevolent fund for people going through the ringer

R

 

Bam - Look here - whereas I agree with every sentiment you mention - kindly learn to curb your ‘fuckin’ language!

(In our defence - if Tinnitus isn’t enough to make even a saint swear - then I don’t know what the f**k is?)

 

I'm in bad shape. Totally losing it. My noise induced spike is now reaching 8 weeks with no signs of easing off. It's the same as it was on Day 1. Does noise induced spikes settle or you just get used to it?

I'm a weak person, I have no emotional resilience, just turn into a quivering wreck of hopelessness and negativity. I don't want to live like this, it's too much.