Autifony Phase II Trial Participants Experiences

[Hotspur]

@Hotspur

Sorry if I missed it but what dosage you were on so far and for how long?

Ive done 12 days,ive got 17 left,tomorrow will be the start of the correct dosage

 

[Hotspur]

I don't want to trivialise your situation or pain in any way, but I think this is to be considered very low compared to most active people on this forum. I can hear mine basically at all times, even on good days - in heavy traffic, at the pub/club - everywhere.

It's awesome that you got on the trial though! And thanks for keeping us updated!

Hi Yes the nurse informed them this afternoon,Autifony dont think it seems to matter too much,only came to light when we were discussing what day i as was due to come in

 

[Hotspur]

@Hotspur

Best of luck tomorrow. You are TT's equivalent of Neil Armstrong.. Let's hope it's a Giant step for you and Giant step for us also!

Thats funny!But didnt he end up a recluse?Hopefully this will yield better results!

 

[Hotspur]

If my tinnitus got cured by Autifony's drug I'd quit my job and be a recluse for at LEAST 6 months so I could relish in the silence hahah. Then I'd start venturing out again, cuz ya know, might get hit by an airhorn randomly or something. At least wanna enjoy it for a bit

Most people i know arent that interested ,suppose its something you have to experience to relate to,anyway hopefully youll all be on it soon

 

[Hotspur]

Great, please keep the updates coming especially now that youre going to take the correct dosage

Thanks mate,ill let you know,hopefully it wont be Houston we have a problem!

 

[Hotspur]

@Hotspur

No you wont have problem. At the best you ll have some or a lot of improvement and the worst case scenario will be no change at all.
Thanks for telling me about your hearing loss - gosh! sounds like severe hearing loss but you can still hear, My loss of hearing must be pretty normal for my age group (older than you!) and also for explaining your T as well.
I too concur with @Valerie that it seems odd that they are not bothered at all by the dosage time table especially as you are nearly half way through (understandable if it wasnt explained to you which is also worrying). This cant be explained away with the idea that the hospital staff know you are getting placebo as it is a double blind study.
Unless it is just one giant con and they are testing for the sugar pill approach and intend to cure people with sugar who have enough faith in the pill they are taking. Mind over matter and all that..........
Cant possibly fathom that they dont care about the dosage time table? Strange indeed!
Anyhow looking forward to your reports as you go along with thanks from us all.

Hi amandine,oh yes,seem to hear fine ,never have to ask anyone to speak up,at the moment
Anyway thanks for that and i,ll let you know, bye for now

 

[chamferman]

Day 1 (5/10)
Day 2 (8/10)
Day 3 (5/10)
Day 4 (8/10)
Day 5 (5/10)
Day 6 (8/10)
Day 7 (5/10)
Day 8 (8/10)
Day 9 (8/10)
Day 10 (8/10)
Day 11 (4/10)
Day 12 (8/10)
Day 13 (7/10)
Day 14 (7/10)
Day 15 (3/10)
Day 16 (8/10)
Day 17 (6/10)
Day 18 (8/10)
Day 19 (6/10)
Day 20 (5/10)
Day 21 (7/10)
Day 22 (8/10)
Day 23 (5/10)
Day 24 (5/10)
Day 25 (8/10)
Day 26 (7/10)
Day 27 (5/10)

These are my total T loudness scores for the trial. I have decided to keep a score of my T for the next 4 weeks for a comparison. Being as I am the first person to carry out the trial at the hospital, the nurse who is running the trial had no other info regarding results.

My hearing was checked after trial and there was no difference in results from when it was checked before trial.

Looking back over trial period there were no real side effects to report. If I was on the real drug maybe I should feel side effects coming off?

 

[Hotspur]

Hi guys,i finish the course on Wednesday,sorry for not getting back to everyone ,but i thought in the interest of clarity it would be best to take a step back and then report when it was towards the end
Basically,i would say i have a mild improvement,say im typically a 4,which would be T annoying in a quiet room after a while?Well now i have days were i can be in a quiet room still hear the T but its not quite so strong a 3 maybe 2?
Can still hear it faintly over TV and Radio,hope this helps!
If theres any questions youd like me to ask on Wednesday and can try to crow bar them in!

 

[Hotspur]

Hi guys,i,ll try to answer all the questions as best as i can,1 Dont think ive had as consistent improvement since before medication,most days about a 2 or 3,which i would describe as a light buzz most of the day
2It could well be placebo,i think unless i get silence then everything is a variable
3They said wouldnt tell me if i get a placebo,but surely wouldnt do any harm after results have been published?From a personal point of view would help a great deal
4 I do think the hearing test will be the good indication of any change,i apparently have quite bad hearing so will ask about any changes when i have the test
5 Again another variable,i feel it did work better with the one big dose,trial doctor didnt seen to think it was a huge deal,but obviously done it that way for a reason,it could also be that medication was just building up?
I also get the impression that this dosage is not set in stone,and like i said previously there were planning on a longer course for people that have had it longer
Hope that helps,anything else i can help with feel frre to ask,bye for now

 

[Hotspur]

So Hotspur, it's hard to say whether you have really seen improvement? You wrote "Dont think ive had as consistent improvement since before medication"

Most days in the last couple of weeks have been about a 2 or 3,which ive not had consistently pre medication

 

[Hotspur]

Oh, thanks, that sounds like potentially quite positive news if you have had a string of good days.
Are you feeling better yourself, with these low days? Or were you already mostly "habituated"
Sounds like your T is similar to mine. Very variable. I get really good days and some really bad days.
Thanks for posting the updates!

Hi,not sure i was habituated,when i first got this a year ago it was very somatic,i dont seem to be affected by noise at all!Like yourself could be variable,but if it did stay with a light buzz it wouldnt be too bad

 

[Hotspur]

Just regarding side effects,and basing placebo or real drug on them, this is what the information sheet says of phase 1
The most common side effects were mostly mild in nature,included headache,feeling a bit sleepy or tired,feeling a bit nauseous.At most 1 in 1o felt these effects
Also 4 out of 56 who received the study medicine showed abnormal events on the heart rhythms which did not cause any symptoms.Heart experts reviewed the data and confirmed that these events were not a clinical worry and could not be proven to be related to the drug

 

[Hotspur]

@Hotspur

Do you know of any other participants who had any improvement?

Ive not met anyone else,the hospital im visiting only has time to see one person each week

 

[Hotspur]

Hi guys,took my final dosage at the hospital today,just a couple a points i thought may be of interest
The hearing test produced pretty good results,i had a 20db improvement in the high pitch range,6000 t0 8000,although the audiologist said these fluctuations can happen,

Also the hearing test itself seems to be proving quite a stumbling block in the recruitment of trialees,im still the only participant at the hospital ,well hopefully someone else from here can get on it soon ,and offer you all slightly clearer results than i could!

 

[Hotspur]

Thanks for your updates! How is your t level since taking the drug?
I'm not an audiologist but a 20db fluctuation seems kind of high to attribute to a margin of error.

Hi Rube, its still the same really,the hearing was,nt put down to error,just a good day?Not sure,was only a brief conversation,having another hearing test there in a couple of weeks

 

[Hotspur]

So there was no improvement in your t at the end of the trial?

First day of trial i was a 6,last two weeks ive been between 4,3,2,mostly 3,today im a 4,which may be down to spending time in a soundproof room with headphones on,not recommended!

 

[Hotspur]

So if I dare to conclude from this post of yours; the drug has a positive effect on your T?

Hi Robb,as i said earlier their has been a mild improvement but this could well be placebo

hi hotspur, thanks for answering questions, glad to see you had improvement. i was wondering:
1. did you get the sense that taking a higher dosages of the drug would give additional improvement?
2. how did you feel after taking the drug? did you feel different at all?

1 I felt the dosage of four at once was better,if it was the real drug i tolerated it very well,so could imagine i could handle more!
2I felt pretty good whilst taking it,not estatic,but just fine really,i didnt honestly notice any big difference within myself,i suppose for me anyway, the best indication if it was the real drug is if i get the same reading on my hearing test in a couple of weeks

 

[Hotspur]

Hi Hotspur once more thanks so much for your quick reply. Please tag me in any of your next posts.
If i am right the drug gave you a mild improvement in your T? But probably gave a better result in recovering some of your hearing loss?
Good weekend plus Best Robb

Hi Robb your correct ,thats spot on

 

[Hotspur]

Hi - just a bit confused by this due to the answer given in the autifony q+a on TT here
A. No, we do not expect AUT00063 to improve the pure tone audiograms as the drug will not restore the damaged hair cells in the ear. However, "063" is aimed at improving auditory processing in the brain, a very important aspect of age related hearing loss, so hopefully could help with understanding speech against a background of noise (particularly in a reverberant environment).

I am missing something for sure - please explain - not improvement in hearing loss except for hearing against background noise.......is this what you mean Hotspur....sorry for being a bit dumb and not understanding the difference here but if you had an improvement in hearing test then this is in contradiction to what autifony thinks will happen? sorry for not understanding.......

Hi amandine,the frequencys between 6000khz and 8000khz i showed an improvement of roughly 20db

 

[Carloflogical]

Just been accepted onto the trial in London.
I will update everyone on here, how I get on

 

[Hotspur]

Any improvement in your tinnitus?

A mild improvement,but of course this could be down to anything!

When do you know if you took placebo or the real drug?

Unfortunately they will never let me know!

 

[Mrs D]

Hi my name is Corrine Dyer, I have had Tinnitus over a year now from a big kiss over my ear. It's a nightmare that I have often thought will I get through the day, let alone the night.

Earlier this year I volunteered to be a guinea in newcastle UK to test a new drug which is being developed in the UK. I was in the trial three weeks. In those three weeks I took 4 tablets a day and after day three I started to notice a difference. By the end of the trial my tinnitus has improved by 75% and I hardly noticed it. During the trial the only side effect I had was slight heartburn and if I drank too much alcohol is was vomiting, the drink I can do without and the heartburn I can cope with. Three weeks after stopping the trial I was back to square one, the awful sound. The trial concludes in August and if all well it goes onto the third and final stage before being licensed . I have also put myself forward for this. Doing the trial has given me what I need to get through knowing that there is going to be a cure.

The trial I did was called QUIET-1 and the drug is called AUT00063 if you want to google it.

Don't give up.

 

[Mrs D]

Do they still need you to continue with the trial? as in the next phase?

Yeah, if I'm willing to do it, so I am as it was amazing and it keeps me going

 

[tomm]

Finished my 29 days of AUT00063 on the 4th of August 2015 (3 days ago).

I had the quietest days of T since it started in this last month. Also some of the loudest.

dB requirement is now 25 rather than 40 at the hospital I was at (Royal Ear Nose and Throat, London, UK). My left ear passed, my right did not.

I bought retigabine from China last year and since AUT is meant to act in the same way I imagined I felt a familiar tickle in the brain on the first day. 50% chance I had pills full of nothing and was imagining it.

3 weeks in it was so low I was writing '1'on my form (from 3) and feeling back to my old self. Placebo or not, this made me very happy. At that level I started thinking about who I would visit at the weekend rather than just hanging on until Monday. A bout of flu 7 days ago brought it back to above baseline (4) and has now reduced to (3) again.

Coming out of the AM-101 trial and into this (I turned down the 3rd cycle of AM-101 so the results for both studies would be valid and was transparent to the AUT doctors) I felt that both were helpful. *If* I actually had the drug, I would say AUT helped more, but I regret having to having make a choice between them. AM-101 helped me as well, and I know I got 2 rounds of that after the first blinded injections.

~10 months in I'm down to a tolerable 3 from 9. No longer suicidal and able to read a book and focus on work. "tincture of time?", maybe. Able to live again, within my means? Certainly.

I don't listen to music anymore but flirted with my spotify account on one of the best evenings. Remembered how nice it was.

Something inspiring by John Metcalfe, The Shock of Recognition:


The same, high quality on spotify:


Keep it nice and quiet.

Tom

Edit: trial is now running until the end of the year (at least in R:ENT, London) with results projected to be released at the earliest Q2 2016.