AM-101 TACTT1 Results Released

@Robb

Please do keep us all updated on your progress, it will help yourself and others. Thanks and I truly wish you the best.

 

@Robb - Please do keep us updated. I haven't heard from anyone yet that has had a permanant worsening of the t after am101.

 

I will

 

I've seen my first ENT today, she told me that I had no significant hearing loss, I told her about the Am101 and she wasnt positive for this at all.. I know that it has to be my decision to do it or not but after seeing what @CathodeRaySound posted today I feel very anxious because I thought that controversal side effects on T were not possible with the Am101... I really thought that i'd do it but now I dont really think so since my t doesnt really brothers me (though it'd be better if it goes away) Can you guys help me please

 

Btw she didn't knew about these trials and doesn't really wanted to

 

There are many options to try that can permanently reduce tinnitus, especially that it started so recently. I'd suggest waiting with the currect studies/new drugs that will most likely provide a temporary relief.
I recommend reading one of my posts:
https://www.tinnitustalk.com/threads/hello-from-mexico.6261/#post-67890

 

It's a shame that your ENT could care less about clinical trials that are taking place to treat tinnitus. I suppose that is just a reflection of the old attitude that "nothing can be done about tinnitus, and will ever be". However, I think people are seriously blowing the possibility of side effects out of proportion here. Esketamine is a safe drug, it's been used in medicine at much higher systemic doses for years without documented side effects on hearing. The procedure itself is done many thousands, if not hundreds of thousands, of times a year around the world. Perforating an ear drum for one reason or another is a fairly common practice in otolaryngology. That being said, you can expect some distortion to your hearing temporarily or a slight worsening of tinnitus before it gets better.

But as I've said before... if these relatively small things are so worrisome to people with tinnitus, then maybe their tinnitus isn't as big of a deal as they have been making it out to be. Not to be negative, but I would jump at the chance to take part in this trial. Years ago, there was absolutely nothing that could be done about tinnitus, whatsoever. There were no clinical trials on the radar, and very little information was available about it at all. To me it is jaw dropping that we have these awesome clinical trials which are available now, and have a real opportunity to help people... and there are so many newbies that are opting out of that chance voluntarily. Maybe it's because they haven't experienced the grind of 10 years of unrelenting tinnitus (or more in many cases!) and the realization that if they have the opportunity to treat it now they should jump at it.

That's just my two cents though. We always have to do what we feel is right for ourselves after proper consultation with a professional. I understand some of the anxiety surrounding taking part in a clinical trial, but I really don't think people have much to lose here.

 

@Marius T. I would second @Hudson's post. I went through the injections and they are incredibly safe, I dont know anyone who had any serious adverse affects. If you go back to the beginning of the thread or the other am101 thread not sure which one it has reviews from people who went through with the trials.

edit: Ive seen the previous posts I think in time Robb t will come back down, I cant see how it could lead to a permanent increase in volume.

 

she's a doctor from the previous millenium and should have remained there

 

@Hudson @cullenbohannon thank you so much guys you surely don't know how your posts are important for me ..
As you said it seems to be safe, but you know I'm only a newbie (though I've clearly understood that the ENT doctors and GP are ignorants about tinnitus) and I don't want to make a hell out of my situation with my T. But now that you informed me well I'm definitely going to take part of those trials. Thank you again guys your words are the most reassuring i've ever heard ..

 

@Marius T ,

Please don't use my opinions as your only source for information. Proper consultation of the risks vs. the benefits with a professional is always the best route. However, if you could find the people running the trial, they will be able to give you a lot better information about what you can expect than an ENT who is not even working on the trial. It is my opinion, but AM-101 is practically speaking, very safe. As with any surgical procedure, there are risks, no matter how uncommon they may be. You will be informed of this. We have to keep in mind that we live in the real world though, and nothing will ever be 100% safe or guaranteed. Hell, the clonazepam, buspirone, and lexapro I take certainly do not come without side effects nor do they come with guarantees.

 

Hi Hudson and everyone,

Just interested in your thoughts. I saw my ENT for the first time yesterday, went through all the standard tests and got hearing check and so on. He is big on TRT and said after we eliminate any curable causes we need to work on my reaction to the T. I described the AM101 trial to him to ask what he thinks about it. He said, "I think it sounds experimental" and said no more but had a look on his face that suggested "you might also try boxing your ears to cure yourself of Tinnitus..."

Sitting in his office with his look of suspicion about the trial I found myself studying an image of the ear - the tympanic membrane looks quite a long way inside the ear. Is perforating it for different procedures really that common? What are the 'fairly common' reasons that eardrums are standardly perforate in otolarygology? To me it looks pretty invasive a procedure, but that might just be my ignorance.

 

@Marius T , I know how anxious you can get making this decision, i was in a lot of panic my self, but im very happy i did it, although it was stressful. Like Hudson said of course their are risks but i think they are minimal, i agree again with hudson, talk to the doctors who will perform it, after i did i was much more at ease.

@2131e I think TRT is an option you can try but it seems early for you. Unfortunately its hard to find an ent who keeps up with tinnitus research but their is a lot of evidence that points to the fact that what am101 treats along with treating potassium channels, what autifony is trying to do could be helpful for tinnitus.

The eardrum is not that far in the ear, i hit my eardrum with qtips in the early stages of t, which made mine worse, they perform the procedure for sudden hearing loss, injecting a steroid, also the hole they put in your ear is extremely small, mine healed by the time i went for my next visit and they had to poke a new hole every time.

 

Thanks @cullenbohannon I just deleted my post - worried about sounding negative about AM101 when so many on here are hopeful that it will help them.

Did the needle hurt? Could you feel it? Did it sound really loud? I read that it is 1mm wide.

 

No worries about the post you did not sound negative you just had some questions.

I felt no pain the first two times, they numb the eardrum before the injection the third time they left the numbing chemical on for a shorter time and i felt a little twinge of something but i would not say it was painful. It does feel a bit weird as the liquid fills up your ear, but after my first injection i was so relived and mad at myself for being so scared. It wasnt loud you dont really hear to much, when the gel runs down your Eustachian tubes you might hear some sounds and popping which i did. I saw the needle and it was very small, dont know exactly what size.

 

Thanks @cullenbohannon

 

Marius I've seen you posting all over the forum asking for advice from anyone and everyone. I'll give you my 2c

From what I've read your t isn't that noticeable when you are out unless you stop and listen for it. You hear it when at home or are trying to sleep correct?

Because your T is new, you will focus on it nonstop and because of that, you will always notice it. As time goes on and you stop being so worried about it. Your T levels should naturally lower on their own. I remember when I first got mine. It sucked I was freaking out over it and honestly, looking back on it. It was pretty minor but since it was new to me, it was MASSIVE!!!!!

Personally I'd wait if I was at all worried about taking part in the trial test. If you take the trial and nothing happens, nothing happens. If you don't take part in the trial and the trial does work for other people, things will move forward and they will have a better understanding of T and knowing a way of fixing it. This will lead to other options and ways of fixing it. So in the end you'll still be able to get the fix down the road.

If your T bothers you nonstop and you cannot get away from it no matter what you do. I'd understand the desire to be apart of a trial. But if it only bothers you when you look for it or lay in bed... Try using a white noise program.

I can not stress this enough to you, stop focusing on it and just let it be.

 

I'm sorry to hear that your tinnitus hasn't either returned to it's previous level or decreased from it.

Was there any problems during the process? I know that during one of my injections there was an air bubble that caused a popping sound. Did you experience anything like that?

 

@jeffie7 Thank you for helping me. As you said, mine's not loud, I can hear it in my house when it's quiet or when I look for it. But I think that if the trials are a good opportunity for me, I'd be mad at myself knowing that it was my big shot. Moreover, I'm scared that my tinnitus goes worse by an another acoustic trauma, or anything else (a friend of mine got tinnitus for only 6 month before he listened to his earplugs for an hour with a medium sound level and it's been worse since then). I'm still wondering if I'm gonna do it or not, only god knows at this time !

 

@Marius T
Sorry for not tagging you in my previous post. You should really take a look at what I've linked, if your T is not that loud and it started recently you have pretty good chances to make it go with Prednisone.

 

@Mosaik I've seen your post but I forgot to answer, actually i've been taking prednisone for 2 weeks and a half but I think it's done nothing on my T :/

 

Ear plugs are your friends.

Mine went down a lot after about a year. It should naturally go down or stop. Who's to say this trial doesn't fix it only for you to get it again from hearing loss down the road. PROTECT YOUR EARS!

many things to weigh out before becoming a trial subject. I've had at T for a long time and if they offered this trial for me without a doubt I wouldn't do it. But each of us have to come up with our own decision. My T is livable and if this trial works I'll have the option to get help down the road when my T gets worse.

Personally I don't think this style of meds will be limited to new T but only that the study for control sake is limited to new T. I could be wrong and this might be your only chance at removing the T you do have.

Either way good luck with whatever you choose to do.

 

@jeffie7 yeah you're right but I'm pretty young, and if the trials are 99% safe I think this is something to do.

 

@Marius T
How much were you taking? Was it prescribed by a doc?

 

I've seen this Prednisone talked about a couple of times. Anyone with chronic T taken it and it works? Or is there a seperate thread for this?

 

Here is the thread:
https://www.tinnitustalk.com/thread...dexamethasone-others-oral-and-injections.348/
I will post soon about my experiences, as I've gotten medrol injections 8 months after the onset and it helped a lot for me.

 

No air bubbles. I think the 'mechanical' part went flawless. But I and the interaction with the substance hmmm
I can't say it helped me and for now my T is a bit more out of control and slightly increased.
Still fluctuating.

I suppose at least it is a sign I won't suffer a too strong worsening as this should have occurred by now already.

 

I was 20 when I first noticed mine. I'm pretty sure I was younger when it first started. I always slept in a room with a fish tank. When I moved to a different place and the fish tank went away a new sound replaced it.

 

I'm pretty sure the ears-auditory system calm down/autorepairs while sleeping, if you sleep with some noise on background you get more chances to get T. I got mine when I moved to a new apartment on wich i used to listen a water bomb at nights, not sure if that was the cause or stress. I read a story of a girl wich T appeared while sleeping and she was waken up by a thunder storm. Also notice people with temporal T after concerts, go to sleep and it just go away in the very most of cases
Sorry for getting off-topic

 

Sorry, don't buy that at all. None of us sleep in a sound-proof chamber. If not for my tinnitus, I could hear crickets and cicadas chirping away all night, and that's the same for everybody in my part of the country. From anime movies I've watched, it's true of everybody in Japan all summer, too.

Our bodies are quite loud themselves, it's a function of our brains to ignore this, but it doesn't stop the presence of the noise, just its perception.

If you're sleeping with an 85db sound system blasting all night, then yeah, you're going to lose hearing and probably get tinnitus, but sleeping with a fish tank? I'm with Dr Nagler on this one. Overprotecting your ears is not a good idea. It's like closing your eyes so you can see better.