@JohnAdams you say you have had a lot of inner ear injections. Have you ever had any issues or has it ever made anything any worse?
Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
- Start date
No, but the way I think it works is the same way research is trying to uncover. How damage to the cochlea ends up with malfunctioning in the brain, tinnitus.
The brain learns of the damage in the cochlea through electrical signals and neurotransmitters. If the message that something is wrong is blocked, the brain might stop the malfunctioning that leads to tinnitus. That's how I think these drugs work, and why I also hope hearing restoration through regrowing hair cells, synapses, or nerve preparation might also stop the tinnitus.
RingingBrother
Member
- Oct 27, 2019
- 96
- Tinnitus Since
- 2018
- Cause of Tinnitus
- Noise induced hearing loss
What would be all the consequences if FX-322 was injected into the epithelium by accident?Here's the truth.
These types of drugs work. They restore hearing. FACT. Restoring hearing will alleviate tinnitus and hyperacusis PROBABLY FACT. They are also kinda dangerous because they are messing with cellular signalling pathways that can trigger tumors and other stuff. FACT. As long as they don't get into the blood stream then they are okay. FACT. That is why phase 1 was measuring blood plasma levels.
Here's the doom scenario, and I am speaking from experience. An ENT is doing this procedure, and sticks the needle in a little too far and instead of injecting the gel into the middle ear cavity, they inject it into the middle ear epithelium. That will introduce the drug I to the bloodstream. BAD. It can happen. One time Minbo Shim did that to me with PRP, and it hurt so bad that I was cussing him out. It was up there in the most painful things I ever experienced, but that was 1 out of > 100. AND it was PRP so it was okay.
I 100% believe this is a full blown cure for many of us, but success depends on the steady hand of the ENT/Otolaryngologist doing the procedure and it could be the difference between life and death. And it will not be a one time shot, this will undoubtedly require multiple injections.
Make no mistake, this is some high wire medical shit that will require the ENT to be perfect with their hands. Despite the awesomeness of this technology, the major risks might sink this. Hope not.
I didn't realize it was a knock off of her device. I figured she was part of that.
I'd sure love to see more info on her device moving forward. Odd it's so behind Lenire in terms of being released and tested.
MemberYou really can't compare Lenire to Dr. Shore's device. They are similar in that they are both bimodal stimulation devices but the key component of timings are majorly different. No one seems to be paying much attention to that. Compare the timings of Lenire to Dr. Shore's published research data and you will see why Lenire doesn't have much effect or even makes people's tinnitus worse.
Dr. Shore's device is going to blow Lenire out of the water.
Allan Mcmillan
Member
- May 11, 2019
- 92
- Tinnitus Since
- April 30 2019
- Cause of Tinnitus
- Acoustic shock from playing guitar with headphones
I really hope so. If tinnitus is the phantom limb syndrome of damaged hair cells then restoring that lost hearing should fix the nerve synapses and lead to a downstream healing process where the brain picks up the restored input and through neuroplasticity eliminate tinnitus.
Allan Mcmillan
Member
- May 11, 2019
- 92
- Tinnitus Since
- April 30 2019
- Cause of Tinnitus
- Acoustic shock from playing guitar with headphones
Even then, I still don't understand how stress can cause tinnitus in people or how idiopathic tinnitus is a thing.
In terms of being released, she aims for 2020 but makes no promises, ultimately it's up to the FDA.
She hopes to have the results of the ongoing study by halfway 2020, I'm praying for release shortly after.
That's what I keep coming back to. If we have found THE mechanism then why would it happen in all these other situations?
Bottom line is we don't know until we know.
Saying tinnitus was cured in mice is like saying your great uncle's neighbor from another country won the lottery once. "Okay......cool story"
I have the same. I assume it's because I'm removing some masking. In my case this seems to only happen when i lay on my left ear though my tinnitus sounds bilateral. Does that mean I actually have unilateral tinnitus with poor localization because of my potential DCN damage? Who knows?
Allan Mcmillan
Member
- May 11, 2019
- 92
- Tinnitus Since
- April 30 2019
- Cause of Tinnitus
- Acoustic shock from playing guitar with headphones
Probably because there are different etiologies behind tinnitus. But for many people tinnitus is caused by damage to the hair cells so surely fixing those broken hair cells should fix tinnitus caused by that etiology?
Do you guys think FX-322 is safe? What if more injections like the four they are doing in the clinical trial is too much? What if that causes very sensitive hearing or the growth of a tumor or something crazy. I guess that's why it's a trial, just curious on your guys thoughts.
If injected properly into the middle ear, yes. Eaten or injected into the blood? Cancer territory.
Is it a pretty standard procedure that they are using to get the gel into the inner ear? Something that most ENTs do? Obviously there is always room for error.
So if they screw up the intratympanic injection...what if it goes down the eustachian tube?
Does anyone know how long you have to not swallow or talk for after receiving the injection?
Well, most of it will flush down the Eustachian tubes so...... I dunno. If they screw up the injection, I honestly don't know.
The amounts of gamma secretase inhibitors they gave the rodents that caused tumors were very large compared to what's being injected so you'll probably be okay if it flushes down your tubes.
Would you do the phase 2 trial if you qualified? Not knowing the long or short term side effects?
Street Novelist
Member
- Apr 2, 2018
- 290
- Tinnitus Since
- February 2018
- Cause of Tinnitus
- Listening to loud music through headphones
If anyone here does get into the trial, please tell us. As this message board is completely anonymous, you don't have to worry about blowing your cover. I just would like to know if a member does get into the trial. I don't need to know specific details.
RingingBrother
Member
- Oct 27, 2019
- 96
- Tinnitus Since
- 2018
- Cause of Tinnitus
- Noise induced hearing loss
Should I try to apply if I have to drive about 60 miles to get to the trial? I wish they were doing it in Miami, Florida.
Of course I do.
They are testing it with a higher dose and tinnitus this time, and will reveal their results in about a year, so we shall see.
I can only judge this based on my own knowledge and the proof will come out, so we shall see.
I've been following this thread for a while before commenting, but this question came to me when you mentioned the safety of ingesting it. Wouldn't the FX-322 draining down the Eustachian tube end up in the same place as if it were ingested? The Eustachian tube would drain into the throat.
Since you have had similar injections before, did you have to be concerned about spitting up/out anything that drained out of the Eustachian tube to avoid it being ingested? Thanks in advance for your reply.
I would. I used to drive about that distance daily for work. Every once in a won't be an issue if you have a reliable vehicle.
- Jun 18, 2019
- 294
- Tinnitus Since
- 05/24/2019
- Cause of Tinnitus
- Chronic headphones use and acute noise induced trauma.
That's what they do, that's how they know the sound is real, because it's handled through the auditory cortex and there are significant differences shown in tinnitus patients against control.
It's not "in the brain", the brain just processes the extra signaling (the tinnitus sound) it perceives, hence why the brain activity is increased, if a sound is heard, obviously the auditory cortex and other correlated portions of the brain have to process it, that said, the sound itself (or rather the signals the brain perceives and transcribes as sound) originates elsewhere, more often than not, in the case of somatosensory, that would be in the cochlea.
That extra signaling can also be caused by a lack of nerve/synapses input, as the auditory cortex expects a feedback from the cochlea (the information in between the cochlea and the cochlea and the auditory cortex is bidirectional), this is likely why you may still perceive "sound" when the auditory nerve is cut/disconnected.