Urtica that is awesome that its getting better! Slighlty is a good thing, hopefully tommorow there is another slightly noticebable difference.
AM-101 TACTT1 Results Released
- Thread starter Hudson
- Start date
bill 112
Member
MemberThey haven't said anything about that. I doubt it, but maybe hyperacusis is partly due to more attention given to the ears? In that case I suppose it might help.
bill 112
Member
yeah thats true my tinnitus reacts to noise which makes me monitor my ears a lot im always monitoring sound around me too just need to get into the next autifony trial....hopefully
thanks
- Jul 21, 2013
- 842
- Tinnitus Since
- 01/2013
- Cause of Tinnitus
- Acoustic trauma from headphones
Nah, they haven't had any trials around here yet. All that email mentioned was that they're planning on doing so.
here's the official TACTT3 website from auris medical; everyone is free to register if they live in a participating country, once done you can choose a site close to you and be contacted by their staff by email or phone.
http://www.tinnitus-study.info/
http://www.tinnitus-study.info/
Johno
Member
- Jan 8, 2014
- 231
- Tinnitus Since
- 6/07/2012
- Cause of Tinnitus
- acoustic trauma
Possible yes, if hyperacusis (and in my opinion it IS) is caused by glutamic acid inbalance:
(Microinjection of glutamic acid into neurons produces spontaneous depolarisations around one second apart, and this firing pattern is similar to what is known as paroxysmal depolarizing shift in epileptic attacks. This change in the resting membrane potential at seizure foci could cause spontaneous opening of voltage-activated calcium channels, leading to glutamic acid release and further depolarization - from wikipedia)
Am101 may help sufferers with hyperacusis too.
has anyone found any hard data from the first two am 101 trials-- since tinnitus is a condition that is subjective and improves for many sufferers after a period of months it would be interesting to see improvement data between placebo and active drug recipients... I am considering undergoing the trial, but the fact that I can't find data, that it doesn't appear data has been published in any professional journals, is giving me a little cause for concern
another question about glutamate excitotoxicity... does anyone know enough about the chemistry of am-101 to know why it would permanently down regulate glutamate rather than only do so temporarily
another question about glutamate excitotoxicity... does anyone know enough about the chemistry of am-101 to know why it would permanently down regulate glutamate rather than only do so temporarily
Regarding your request for hard data from the first two am-101 trials. This might be something relevant.
I have found the following articles (on page 32) in a publication made by a Belgian hospital:
Source: http://issuu.com/jessaziekenhuisvzw/docs/jessalinea_nr7_intranet-def./32
The data seems to be from 2012.
I'm unable to copy / paste anything from the publication since it is in Flash. If somebody else is able to, be my guest.
I'm also unable to create a link because i'm new. I need one like to create a link.
Mod edit: Link added.
according to the link...the phase 2 study seemed to show no statistical change between active drug and placebo as far as minimum masking level is concerned.... and that was the efficacy goal of the trial... the efficacy goal of phase 1 was a combination of masking level, tinitus loudness and the questionaire... then since masking level was succesfully reduced in phase 1 they stated masking level should be the more primary test of effectiveness and then when there was no difference in masking level between active drug and placebo in phase 2 the link questions whether "semi objective" criteria like masking level are sufficient to measure the success of the study.... In my eyes at least that's not very confidence inspiring.... anyone else have an links to data/results from the earlier trials... I'm desperate and will probably participate .... this just doesn't look that promising upon further examination
I strongly believe, that Auris Medical has some good candidates. They also co-worked with Ecole Polytechnique (Xigen) Lausanne and havea good surrounding.
Also the Human Brain Project Lausanne might give answers.
https://www.humanbrainproject.eu/
Also the Human Brain Project Lausanne might give answers.
https://www.humanbrainproject.eu/
where did it mention that a higher dose reduced masking levels, I don't see that anywhere... for phase 2 that link explicitly states that there was no difference in masking levels for placebo and drug... that's why it failed the efficacy goal of the phase 2 trial
I have a possibility of applying for an AM101 trial for acute (recent onset) tinnitus. I would welcome any opinions on whether I should ask my doctor to put me forwards for this? I know there must be some element of risk and I may end up getting a placebo - on the other hand I don't want to be sitting here in 18 months reading about the guy that got a benefit out of this thinking it coulda been me! BUT I don't want to be reporting back it made it worse. I know a couple of members in the usa did a trial with mixed results.
These things are so hard aren't they - how do you make decisions on things like this?
These things are so hard aren't they - how do you make decisions on things like this?
Ps - I promise to read this whole thread too - haven't sone so yet - just wanted some opinions and thought better to add it here.
Please keep us updated on how things go for you.
Do you have a backstory about how your first got your tinnitus?
I think it will not get worse. I have the feeling that or get`s better, or doesn`t. Why would it even get worse ... it would mean that the drug would cause damage wich I think is not the case anymore since they have moved on to phase 3 trials. I am one of those people that did not get the chance, just because my doctors secretary was completely misinformed about the trials and Tinnitus. So I would say go for it ... can you tell us some more about the mixed results you mentioned... what kind of result? Who ere they and how long did they have Tinnitus? maybe you have a link to their story?
Ah sorry it was the Fish's story and another guy already linked on here - though Fish's outcome looks positive doesn't it. I think I'll see if my doctor will put me forwards, I can be assessed and think about it then, if I wait I'll miss the boat and it may be too late. I may not fit the criteria anyway who knows. My doctor has already told me he doesn't see thepoint in referring me to an audiologist/ENT or anything at all hopefully I don't have to fight a battle with him over this.
If nothing else it gives me a few months hope and a feeling someone actually is trying to help me, that's worth something.
I would recomend you should to it. I'm also glad i participated. Altough it caused a lot of stress, traveling to the doctors, having my eardrum pinched, having to fill in a T. diary everyday, and two weeks of a really loud T and distorted hearing.
I don't think it's doing any worse to your ears, nothing that's not temporary. Or at least I hope so..
It gets better everyday and I think two weeks after the injection it should
have reached the point as it was before the injection. Then hope it keeps on improving beyond the point before the trial.
Btw. if you feel it didn't help, you get the chance to do the followup trial
in which you get the real drug for sure.
@Hudson: I got my T though a mean firecracker that got thrown at me.
I don't think it's doing any worse to your ears, nothing that's not temporary. Or at least I hope so..
It gets better everyday and I think two weeks after the injection it should
have reached the point as it was before the injection. Then hope it keeps on improving beyond the point before the trial.
Btw. if you feel it didn't help, you get the chance to do the followup trial
in which you get the real drug for sure.
@Hudson: I got my T though a mean firecracker that got thrown at me.
Damn, this is a Swiss Company but you can't select Switzerland.... So it's not available?
I wish I could participate....
I have been meaning to start a thread for those who have had the am101 treatment for the past couple of weeks now. I regret not having done so. I feel like these posts will become lost in this huge thread. I'm still happy you guys posted though and shared your experiences. I have a few questions for the both of you if you don't mind.
Urtica, that device they used to suck the numbing liquid back out of your ear, do you know if its the same one they use to clean earwax out of people's ears? I've read several accounts on the net of people getting tinnitus from those. It seems like there would be the potential to cause more damage to the ear if this is what they are using. I'm not trying to scare you, I'm just curious.
Fish, how much of an impact would you say tinnitus still has on your life after the treatment? I know you said its not bad at all but I figured you would have abandoned the board if it wasnt having a negative impact. I hope that didn't come out wrong, I'm not trying to be rude.
Urtica, that device they used to suck the numbing liquid back out of your ear, do you know if its the same one they use to clean earwax out of people's ears? I've read several accounts on the net of people getting tinnitus from those. It seems like there would be the potential to cause more damage to the ear if this is what they are using. I'm not trying to scare you, I'm just curious.
Fish, how much of an impact would you say tinnitus still has on your life after the treatment? I know you said its not bad at all but I figured you would have abandoned the board if it wasnt having a negative impact. I hope that didn't come out wrong, I'm not trying to be rude.
Hello again everyone!
I've been getting asked about my AM-101 treatment quite often recently - I guess it is related to new trials taking place soon. I thought I could write a quick follow-up then:
I participated in AM-101 medical trials in september 2012 after my tinnitus onset in july, the same year. I don't know what was the initial cause of my tinnitus, I suspected a couple of things but the most likely cause was the ototoxic antibiotic I was prescribed around that time (ciprofloxacin - that s**t should be banned worldwide, there are safer alternatives nowadays).
I quit the AM-101 trial early because my tinnitus worsened suddenly after second injection. I went to take a nap after coming home (it was 2-hours travel to the hospital where I was being treated) and after waking up I realized that my tinnitus was much louder in the ear where drug was injected. I panicked a lot and went back to hospital the next morning to get checked. The spike went back to normal volume after around 2 days. I didn't have courage to continue with a 3rd injection though.
I didn't feel (hear) an improvement until around a month after quitting the study. The improvements were very gradual, but they were in fact measurable - tinnitus loudness is measured several times throughout the study and the tests confirmed that I indeed did get better.
Question I'm often asked - do I attribute my improvement to AM-101? It wouldn't be fair if I said yes. I ignored doctor's orders and I tried several treatments at the same time so I'm afraid I cannot say which one of them actually helped... It literally was a matter of life and death to me so I really did everything I could to improve my chances.
Another question I'm asked - should you participate in AM-101? That unfortunately is a question I cannot answer. It greatly depends on how do you feel, how bad your tinnitus is. I was very, very afraid of this treatment - day of first injection was the most intense day of my life, a mixture of fear and hope. I'm not a religious person but I did some prayers, I cried a little, I listened to my favourite song for the last time. I was mentally prepared I'm going to lose my hearing. Yes, this is one of the possible side effects they warn you about. It is a very serious, invasive procedure that involves puncturing an ear drum and injecting unproven, experimental drug. I really don't want to push anybody into joining this study. It needs to be your decision and yours only.
The quality of medical care itself was great - I had numerous tests done throughout the study, I had a doctor that was available to me 24/7 on the phone who would answer any and all of my questions.
And last but not least, how is my tinnitus today? Much, much better. It is nowhere as loud as it was in july two years ago. I can really tell the difference before and after all those treatments I tried and I can say I'm fully habituated to what is "left" of my tinnitus. It isn't completely gone but I effectively forget about it throughout the day as it's easily masked by everyday sounds. It still fluctuates, usually being better in the morning (it's sometimes completely gone when I wake up only to come back later in the day) but as I said, it doesn't bother me one bit.
One permanent change to my lifestyle that I think some of you can relate with - I'm much, much more careful with loud noises and I do my best to avoid additional exposure. I carry earplugs with me all the time because you never know when they might be useful. Perhaps it's too much, but I even block my ears when there's for example an ambulance passing by close to me etc. I scrapped in-ear headphones completely. I listen to the music at lower-than-moderate volume and I take breaks often. Better be safe than sorry.
That would be it I guess, hopefully my story helps someone. I wish best of luck to everyone who decides to participate in further trials. Take care
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