Street Novelist
Member
- Apr 2, 2018
- 293
- Tinnitus Since
- February 2018
- Cause of Tinnitus
- Listening to loud music through headphones
Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
- Start date
MemberBummer. Big one.
I have the same type of hearing loss and thought it would be spot on. Not huge, so you probably still have supporting cells, but still significant in my opinion.
I guess I was right to lower my expectations a few months ago. I'll just forget about it for a few years now and see what happens then.
brownbear
Member
- Sep 24, 2016
- 272
- Tinnitus Since
- July 2016
- Cause of Tinnitus
- Sudden sensorineural hearing loss ? cochlear hydrops
PetitGarsTimide
Member
- Jan 6, 2018
- 225
- Tinnitus Since
- 2016
- Cause of Tinnitus
- Dumb teenager who listened to loud music everytime
Damn that sucks..... I sent in my paperwork yesterday, and mine only dips to 20db at 2k hertz and then back to normal, so i guess I don't have a shot. Anyone know an ENT where we can fake an audiogram??????
I am confused. Shouldnt tinnitus at any frequency of hearing loss be elligible for this treatment?
It is a bit concerning I see no listing on the clinicaltrials.gov website for this Alamo trial. It just shows that the Phase I was completed. It isn't clear how they are doing this without a registered trial.
When I talked to the doctor on Monday, he said that this was as safety trial or phase 1.5. So im assuming they are not in phase 2 yet. He said 34 or 36 people cant remember what he said would be enrolled, and 24 would receive the drug
I tried. I spoke to Dr Rosenbloom on the phone Monday morning. My problem is, they need to compare a past audiogram and an up-to-date audiogram, to determine "stable" hearing loss. The present audiogram would be no problem, but when I called UT Dallas Callier Center's medical records to get my audiogram from 2009, they didn't have it in my folder.
As I understand it, if Alamo ENT Associates don't have two or more audiograms to compare in the evaluation process, you can't get in.
I would not say you dont have a shot anyone an everyone does. Any one willing to try should. If no one tries then the trial dies. There will only be a select few who make it. Which is great for us if this works an even better for them. Because your dip is lower in frequency they may consider that a better range for the test. Im willing to lean on they want people who are closer to completely tone deaf so to speak threw the lower ranges.
Yes i agree. However there are some exemptions to when they have to report stuff. It sounds like thier still a little nervous an maybe thats this whole 1.5 thing. Has any one tried to contact frequency therapeutics directly?
Street Novelist
Member
- Apr 2, 2018
- 293
- Tinnitus Since
- February 2018
- Cause of Tinnitus
- Listening to loud music through headphones
I have tried to contact Frequency Therapeutics, via phone and e-mail, and have not received any response.
They probably want people with losses at every frequency so they can see how the formula affects each one. Older people with age related hearing loss will have exactly that and if it is under normal circumstances it would probably be a straight line sideways. I'm not sure you guys want to be in on this trial anyway. There is no guarantee you get the medicine vs the placebo, plus its going to be only in a single ear. Its better to wait for it to come out.
Make sure they test it on people with hidden hearing loss such as myself.
Inject FX-322 in my right ear please, i'd love to be able to hear sharp high pitched notes again normally instead of them muffling. My cochlea will thank you
Inject FX-322 in my right ear please, i'd love to be able to hear sharp high pitched notes again normally instead of them muffling. My cochlea will thank you
Street Novelist
Member
- Apr 2, 2018
- 293
- Tinnitus Since
- February 2018
- Cause of Tinnitus
- Listening to loud music through headphones
Does anyone know when they are starting the clinical trials at their headquarters (MA or CT)? It's supposed to be before 2019, correct?
PetitGarsTimide
Member
- Jan 6, 2018
- 225
- Tinnitus Since
- 2016
- Cause of Tinnitus
- Dumb teenager who listened to loud music everytime
As far as I remember :
- 2018 (right now) => weird trial (1.5 phase ? I don't know how to call that) to certainly do more tests.
- (hopefully) early 2019 => "real" phase 2
Still not 100% sure
- Nov 8, 2016
- 45
- Tinnitus Since
- 2011
- Cause of Tinnitus
- don't know, hearing loss related?
Well it doesn't look like I will get in. I called Brignham and Women's where I had the test. Apparently they did the test to 12hz which they normally don't do. What I wasn't told was when they saved the results, the computer software only saved up to 8hz. So I don't have a past audiogram that shows any hearing loss. Seems like practicing CBT for about a year more until Decibal comes out with a Trial. I am interested in the Susan Shore trial also, and being in IT I can work remotely for a month or two, just don't think I can afford a place to stay near the trial for 4-6 weeks or whatever they want.
Why are there no buttons like dislike or loser instead of winner when it comes to ranking posts on this board?
Say what? I have noise induced hearing loss. That is a vague statement with a random number. Mine is from acoustic trauma. Which is noise induced and I dip at 6khz. You cant place a statement for a broad term and attach it to a random number.
- Nov 8, 2016
- 45
- Tinnitus Since
- 2011
- Cause of Tinnitus
- don't know, hearing loss related?
They declined me as well saying they need people with noise induced hearing loss. I didn't know that could be determined just by looking at an audio gram. Is that even possible?
That sucks for those of use who have higher frequency loss, especially when the ENT's say hearing aids won't help. But maybe they are looking to do something specific and if it is successful, they will branch out to other types of hearing loss
You can't tell for sure, but NIHL has a typical audiogram type (a dip around 4-6 kHz).
Street Novelist
Member
- Apr 2, 2018
- 293
- Tinnitus Since
- February 2018
- Cause of Tinnitus
- Listening to loud music through headphones
Everywhere I've read they say Frequency is doing the next phase in the second half of 2018. Is that wrong?
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