Autifony Phase II Trial Participants Experiences

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

 

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

 

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

 

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

 

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

 

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

 

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?

 

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!

 

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

 

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

 

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

 

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

 

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

 

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!

 

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

 

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!

 

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

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

 

Hi Robb your correct ,thats spot on

 

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

 

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

 

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

Unfortunately they will never let me know!

 

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.

 

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

 

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 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.