MemberNo idea, multi tonal. Havent bother to find out what frequency the most dominant tone is.
Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus
- Thread starter attheedgeofscience
- Start date
SteveToHeal
Member
ok thanks. I'm just trying to figure out if Autifony are of the belief that t (from noise exposure) gets set up from damaged hair cells and thus hearing loss. Or if they just including both criteria as completely separate and unrelated conditions. The whole two birds with one stone, save money etc.
Would you say your multi tonal t is less than 8000Hz? And is it from noise exposure? We should have a specific section in each persons profile that says cause of t, both ears, one ear etc, so that we wouldn't have to re-ask. I'm sure you've told your story many times. Sorry. Maybe that feature is coming in the new website. No disrespect moderators. Tx.
Not sure if this is helpful or not, but I have zero hearing loss on standard measures (I was told that I have "the hearing of an 18 year old"). However, one audiologist did pull out the extended range gear and picked up some loss around 12,500 Hz (which is also the measured frequency of my T). Obviously the hearing loss isn't at all noticeable or problematic at this frequency...unless I someday have the need to converse with bats
I think most adults have some hearing loss, even if they do not have tinnitus. No hearing loss would be perfect hearing across the whole range, i.e. 0db loss at all frequencies. It is just that ENT's etc tend to say you have no hearing loss if you do not have over 30 (or is it 25) dB.
In a later post I said 'I have hearing loss up to 35db at some frequencies on the tests they perform in the NHS here (i.e. up to 8kHz). And from being on the ANM trial and testing myself I know that my hearing drops quickly above 9k to nothing at all at around 12.5kHz.'
Funnily enough he predicted that it was unlikely to start on schedule and said he thought the company's timescale was unrealistic. I know the guy is very busy (NHS in the UK is getting shocking nowadays thanks to years of inadequate funding) so I'd really rather not wear out my welcome if you understand. I think it is best to just be patient - the bureaucratic hurdles for this stuff are huge. It will happen.
I can answer that for you. AUT00063 does nothing whatsoever to improve the condition of your hair cells, so that's not what Autifony is interested in. What it can do is improve the processing of what you hear.
For instance, I can't understand people in a crowded restaurant unless I can look them directly in the face. It's not that I can't hear them, it's that my brain can't filter out their voices from the background noise sufficiently for comprehension. That's a symptom (or co-symptom) of my particular tinnitus.
AU000063 could help me because, in theory, the same hyperactivity of auditory neurons (in the brain, not the ear) is causing my inability to filter out background noise and my tinnitus. Fix one, fix both. Mind you I've always had more trouble than most focusing my hearing in a noisy environment, but it's gone from "trouble" to "absolutely not able to do it at all".
So Autifony doesn't care about hair cells (in this context) but they do care about functional hearing loss.
SteveToHeal
Member
Yes - i know Autifony is not targeting improving the condition of hair cells. I was probably a bit vague. I am trying to figure out if there are any people with T that have NO (NONE whatsover) hearing loss have T. See RoadToSilence above. He has hearing loss at 12.5KHz and his T at that frequency as well. So the two are linked. So the old question of damaged hair cells causing t. However people get ear infections, blocked eustacian tubes, tmj, brain neuromas that have nothing to do with damaged hair cells (unless an ear infection eats away at the hair cells) and they have t. Sorry. It might be a discussion for another thread.
This is what I truly believe: the fact is that someone that has T in some X frequency, for sure is gonna have "hearing loss" exactly in this frequency and in the same proportion of the volume of its T. This is because of the effect of masking. Your T masks the lower sounds of same frequency as higher sounds of yout T mask your T.
So you can have super perfect ears and because of that hyperactivity somewhere in auditory pathways but your hearing tests will say that you have a hearing loss. I heard many cases of T caused by stress, nothing to do with the ears and they have hearing loss in same T freq.. If some day T get cured in this cases, hearing will be recovered to it initial state i belive.
And this is what I believe too, against many poeples oponion probably: Even cases that came from acoustic trauma, i think most of the cases dont cause real damage on the haircells but they make start this hyperactivity on the neurons located on auditry system. I mean damage in haircells is always happening but in a slow way, not as fast as when we get T from a concert of let say 30db so this T may cause a hearing loss of 30dB in some frequency, i dont think it made a damage in haircells that makes lose 30db, i believe when this person gets cured of T he will recover the hearing capabilities, make clear this is my humble opinion
@SteveToHeal It is for another thread, but it's also impossible to answer. Those of us with hearing loss don't know if the hearing loss and tinnitus are related or coincidental. Most of those without hearing loss haven't been tested above 8000Hz, if at all, and we haven't even talked about infrasound, frequencies below the human hearing threshold. Without a major multi-center study with thousands of participants over a decade of reporting, we can't give a meaningful answer.
It is totally understandable that Autifony does not know whether 00063 works on humans or not as it has not been tested for T on humans yet (documented).......I would not lose hope however I would be cautious with getting over excited by anything that is not proven.
my take anyway, but I must admit that in the last 15 or so years, this has been the most exciting research into T that my poor noggin can remember
sticky
my take anyway, but I must admit that in the last 15 or so years, this has been the most exciting research into T that my poor noggin can remember
sticky
Thank you for the well explained explanation here
I just want to point out if a miracle happens and that's the case, can we please make sure the party has extremely low music haha
Thank you for the well explained explanation here
Stacey with millions of people attending it will be noisy even with no music
But with cure available we won't need to worry about noise
Yes, Benryu is "back" but he is extremely busy with work now and the coming months. He said in a mail that he will maybe find some time in the end of December.
Sorry I am going to be a bit technical here, but it may interest some of you.
Potassium channel modulators should not be compared, there is a ton of parameters and subtilities that can change drastically the impact of one drug.
Flupirtine acts mainly on the Kv7.3 , retigabine specifically acts on the neuronally expressed KCNQ2-KCNQ5 (Kv7.2-Kv7.5) channels, AUT00063 will act on the Kv3 channels.
Talking from a neuronal perspective, Kv7 and Kv3 mediate the channels and more precisely the action potential.
The action potential is an electrical signal generated near the cell body of a neuron that propagates along the axon to the axon terminals.
After an acoustic trauma, or after taking some drugs such as quinine there is an interference with the excitability of spiral ganglion neurons (The evil glutamate is guilty
Going back to the potassium channels, Kv7 channels primarily control the interspike interval with a limited effect of the repolarization. Kv3 channels control the repolarization of the action potential and are expected to induce a new state.
The idea is to open the right channels to lead to a neuronal hyperpolarization, thereby stabilizing the membrane potential and decreasing excitability.(No or very little Tinnitus)
Conclusions:
- Despite a drug being potassium channel openers, it has to be very precise to work.
- Flupirtine doesn't act on any sub unit related to T. ( So no possible impact)
- Retigabine acts on interspike interval, meaning less T. spikes and it can possibly repolarize the action potential for some people. But the sub unit range is too wide with numerous side effects. (so it can work to stabilize T. and decrease it to some extent, but is not specific enough to be viable.)
- AUT00063 acts directly on the repolarization and is much more precise, so it's a viable solution providing it works as expected
While we all waiting for Autifony news, I found this post from Benryu very interesting, maybe some of you didn't see as it's in another thread, its an explanation of the different available drugs regarding potassium channel modulators
Flupirtine — Another Potassium Channel Opener
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
new info about autifony
The QUIET-1 Study in Tinnitus – A UK study
FAQs
On the assumption that you are reading this as an enquirer to Autifony asking a
question about our tinnitus study, may I first apologise for sending you a
"generic" reply. We are really interested in your issues and how to help people
with tinnitus understand better the details of our study. However, we are now
receiving a large volume of mail and we are unable to spend enough time to
respond individually; instead we are working hard to get the study sites opened
across the UK and get them enrolling people into the study.
Q: There seem to be lots of detailed eligibility criteria to enroll into the study –
why is this and will it mean that I cannot be enrolled?
A:
Our first clinical study last year (2013) was in healthy subjects, young
adult males and a group of older men and women, and was intended to
check the safety of our new drug AUT00063 in people.
The QUIET-1 study is the first study of "063" in people suffering with
tinnitus;
We have to be very careful to test the medication in a uniform group of
subjects whose tinnitus is relatively similar. So we need to have quite
tight eligibility criteria. For example, the tinnitus must not have become
too long-term (6 – 18 months is OK) and must not be too extremely
severe.
We also need to be careful that "063" does not adversely affect other
medicines or other illnesses, so we also need to have restrictions on
certain nervous system illnesses (e.g. Parkinson's disease, MS, myasthenia
gravis etc), as well as some medicines that enter the brain.
If the trial is successful, then we will be able to conduct additional trials
with a broader range of people with tinnitus.
Q: How will I get more details?
A:
We shall constantly update the www.autifony.com website. Over the
coming weeks we shall list which hospitals will be enrolling patients and
when they will open for the enrollment process. Recruitment will be
open over a period of at least 6 months.
We may even be able to post a telephone number for people to call and
check certain things; we are keen to do this so that people will have a
good idea of whether they might be eligible for the study.
We are likely to inform GPs in the locality of the study sites – but this has
not yet started so please don't contact your practice nurse or your GP yet
– wait until you see the details of your own local area on our website.
Q: how many hospitals will be involved?A:
10 -12 or even more, all in England.
We shall probably be studying up to around 150 study participants so
there will be room for lots, all around the country.
Q: I do not live in the UK. Can I visit the UK and be enrolled in the study? Will
you be opening in other countries such as Ireland, the Netherlands..?
A:
Not this time.
People who enroll in the QUIET-1 study must be resident here in the UK,
have an NHS number, and be registered with a local GP, who will be kept
informed of any patients who enroll.
If this study were to show encouraging effects of AUT00063 [and we are a
very very long way off showing anything at all at the moment, as it is only
just starting] then other studies may follow across a broader range of
people with tinnitus and across different countries.
It is also important to know that the study participants will have to
undertake a number of hospital visits over a period of 8-10 weeks and
this will take considerable time and commitment; around 5 half days out
of your schedule. If you start on the study, we really need you to stick
with it!
Q: I have suffered from tinnitus for well over 18 months. I still don't understand
why can't I be enrolled? Does that mean that this medication will not be able to
help me?
A:
As mentioned above, this is the first trial in subjects with tinnitus, and we
need to take one step at a time as we test the effects of "063". If all goes
well in this study, we will aim in future to broaden out into testing the
drug for people who suffer from different kinds of tinnitus, including
those who have had the condition for longer.
The QUIET-1 Study in Tinnitus – A UK study
FAQs
On the assumption that you are reading this as an enquirer to Autifony asking a
question about our tinnitus study, may I first apologise for sending you a
"generic" reply. We are really interested in your issues and how to help people
with tinnitus understand better the details of our study. However, we are now
receiving a large volume of mail and we are unable to spend enough time to
respond individually; instead we are working hard to get the study sites opened
across the UK and get them enrolling people into the study.
Q: There seem to be lots of detailed eligibility criteria to enroll into the study –
why is this and will it mean that I cannot be enrolled?
A:
Our first clinical study last year (2013) was in healthy subjects, young
adult males and a group of older men and women, and was intended to
check the safety of our new drug AUT00063 in people.
The QUIET-1 study is the first study of "063" in people suffering with
tinnitus;
We have to be very careful to test the medication in a uniform group of
subjects whose tinnitus is relatively similar. So we need to have quite
tight eligibility criteria. For example, the tinnitus must not have become
too long-term (6 – 18 months is OK) and must not be too extremely
severe.
We also need to be careful that "063" does not adversely affect other
medicines or other illnesses, so we also need to have restrictions on
certain nervous system illnesses (e.g. Parkinson's disease, MS, myasthenia
gravis etc), as well as some medicines that enter the brain.
If the trial is successful, then we will be able to conduct additional trials
with a broader range of people with tinnitus.
Q: How will I get more details?
A:
We shall constantly update the www.autifony.com website. Over the
coming weeks we shall list which hospitals will be enrolling patients and
when they will open for the enrollment process. Recruitment will be
open over a period of at least 6 months.
We may even be able to post a telephone number for people to call and
check certain things; we are keen to do this so that people will have a
good idea of whether they might be eligible for the study.
We are likely to inform GPs in the locality of the study sites – but this has
not yet started so please don't contact your practice nurse or your GP yet
– wait until you see the details of your own local area on our website.
Q: how many hospitals will be involved?A:
10 -12 or even more, all in England.
We shall probably be studying up to around 150 study participants so
there will be room for lots, all around the country.
Q: I do not live in the UK. Can I visit the UK and be enrolled in the study? Will
you be opening in other countries such as Ireland, the Netherlands..?
A:
Not this time.
People who enroll in the QUIET-1 study must be resident here in the UK,
have an NHS number, and be registered with a local GP, who will be kept
informed of any patients who enroll.
If this study were to show encouraging effects of AUT00063 [and we are a
very very long way off showing anything at all at the moment, as it is only
just starting] then other studies may follow across a broader range of
people with tinnitus and across different countries.
It is also important to know that the study participants will have to
undertake a number of hospital visits over a period of 8-10 weeks and
this will take considerable time and commitment; around 5 half days out
of your schedule. If you start on the study, we really need you to stick
with it!
Q: I have suffered from tinnitus for well over 18 months. I still don't understand
why can't I be enrolled? Does that mean that this medication will not be able to
help me?
A:
As mentioned above, this is the first trial in subjects with tinnitus, and we
need to take one step at a time as we test the effects of "063". If all goes
well in this study, we will aim in future to broaden out into testing the
drug for people who suffer from different kinds of tinnitus, including
those who have had the condition for longer.
- Jul 21, 2013
- 842
- Tinnitus Since
- 01/2013
- Cause of Tinnitus
- Acoustic trauma from headphones
This should pretty much silence the concerns that it will ONLY work for short periods of onset.
They are being wise and limiting the number of confounding variables by testing a limited demographic of tinnitus sufferers.
I get the feeling they really believe in their product and are just doing their due diligence to get it to the market fastest.
At last we are getting some numbers. Add 1 month for the drug dosing. Add some more months to analyse data and post the results. Maybe 1 year minimum b4 we see if 063 is effective?? I am glad to see they did no hammer home the hearing loss requirement. Perhaps they will relax that.
I think this is what they mean by "a very very long way off showing anything at all at the moment" -> I guess 1 year b4 results are published.
I could manage that. However, if the placebo to real drug ratio is too high and they don't give you the real drug after the trial (more than likely), it really is a shot in the dark. But then you might get put on their register for phase 3.
Thanks Christian for sharing that info. Is it the same email address as what is on here: http://www.nhs.uk/Conditions/Tinnit...7-GB&Condition=Tinnitus~quiet&pn=1&Rec=0&CT=0
I am sorry, but i can't believe (understand) this theory, which base on "all problems are in brain". I had acoustic trauma. I don't have hearing loss(my ent said me, another young people can envy my good hearing). Autifony says, that phantom sounds are from brain,because brain expected signal.
I don't understand.
I have multi tonal tinnitus in both ears (i hate it), no hearing loss and hyperacusis(i wear earplugs all time). Hyperacusis is problem in ears, i think.. I don't believe this problem is in brain..
Please, give me hope and say me, that i am wrong... I dont belive, taht cure is near..
I don't understand.
I have multi tonal tinnitus in both ears (i hate it), no hearing loss and hyperacusis(i wear earplugs all time). Hyperacusis is problem in ears, i think.. I don't believe this problem is in brain..
Please, give me hope and say me, that i am wrong... I dont belive, taht cure is near..
There is a theory that hyperacusis is a projection of the hyperactive brain onto the ears. Just like say Allodynia is in chronic pain - the brain is so hyperactive that in these people even wearing clothes hurts.
Hence if they cure the brain, the hyperacusis will as well. This is a very strong theory, but, will Autifony work that is a different story.
Yes they got sick of your emails and now apparently will be sending automated responses as above.Maybe they got sick of my emails and decided to give us an update
I believe tinnitus is in the brain.. Meg scans already showed that parts where T is it lights up like a christmas tree.. Its activity thrown out of whack caused by over firing neurons caused by any cause of T.. In your case acoustic trauma and mine too.. I have zero hearing loss too, but was also exposed to 130 db for 40 mins and so its obvious i have T cause of that ( mild) and we may have perfect hearing but somethings still thrown out of whack we may lost some frequencies which you wont notice but your brain will and thats why its making T sound. When you get T, your kv3 channels in the brain are reduced causing neurons to overact.. So thats why they came up with aut00063 to regulate the channels slowin down the neurons which will decrease T ( hopefully). It deff has me more understanding and i dont think of it any other way until proven it doesnt work
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