A Dilemma — Should I Proceed With AM-101?

Discussion in 'Support' started by tom1989, Dec 16, 2014.

tinnitus forum
    1. tom1989

      tom1989 Member

      Tinnitus Since:
      11/11/2014
      Hi all

      I'd like to start by saying what a fantastic community this is. I've only been here a few weeks but the support between members is incredible.

      My T started about 5 weeks ago (probably for noise exposure). Until a week ago it was about a 4/5 in loudness. However, about a week ago it went down to a 1 and is now a minor nuisance.

      Before this reduction I enquired and am in the process of beginning (no injections yet) the AM101 trial. Do you think I should continue with this?

      I'm conscious of it making the T worse but also if I don't go ahead and the T comes back I may have lost a good chance to eliminate it. The T is a minor nuisance as it is (will it come back? how long do these troughs last!?) but it would be nice to eliminate.

      Thanks for you support (and apologies if I come across as being pathetic - I know some have it much worse than me).
       
    2. Kaelon
      Wishful

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      Hi @tom1989,

      It's nice to meet you. I'm about a week ahead of you on the T schedule -- first contracted T on 11/2, but in my case, it appears to be getting louder / worse / more pulsatile.

      I'm curious, how do you know that your T was caused by noise exposure? Was there a specific event or circumstance that you can identify that is linked to the onset? How would you describe your T? Is it tonal or non-tonal? Pulsatile? Subjective or objective? What has your ENT told you are the likely causes?

      I have read a lot about AM101 and, other than ~40% of all participants are injected with saline at this stage, it sounds like a promising investigation into a compound that is principally designed to help people with acute tinnitus caused by a traceable and confirmed acoustic or vestibular trauma. A common side effect of treatment is a significant worsening of the T, which can last for several weeks while the Eustachian Tubes drain of the gel (whether you are injected with the real compound or with saline, ET fullness can usually produce amplification of Tinnitus).

      Because I am not really sure if my T was caused by some sort of exposure to loud noise, I'm not really sure that I would benefit from AM101 -- but if I were in your shoes, and I knew for certain that loud noise caused it, I would at the very least seriously explore moving forward with it, if there's any chance that it can cure you. Otherwise, if your T has just become a minor nuisance that you can concentrate over, perhaps there's hope that the body is beginning to heal itself in your case.

      I will keep you in my thoughts!
       
    3. Jean-Daniel Guay

      Jean-Daniel Guay Member

      Tinnitus Since:
      10/2014
      Hi Tom,
      I'm in the same boat. I'm in the process of getting into AM-101 trial in Quebec, Canada and I'm wondering if I should go throught it? I feel that I'm getting slowly habituated to my T (even if it still considering it as a nuisance as I have a hard time concentrating and sleeping through the whole night). I also that my T seems to be quieting down by itself (or my perception of it). I also have mild hyperacusis (which seems to get slowly better as well). I would also like to get rid of my T, but I'm scare that injections in the ear might make my T and H worse. I don't want to be back to square one after the injections (a month and a half ago) where I had suicidal thoughts. My T was probably noise-induced, but it is also probably related to the fact that I took the plane while having a sinusitis. Here is my detailed story: https://www.tinnitustalk.com/thread...ng-to-try-am-101-trial-in-quebec-canada.7134/

      I would love to have the opinion of senior members on this board about these questions:

      1) Should I expect my T and H (or at least my perception of T) lower with time?

      2) From reading the posts an AM-101, it seems like half improvement and half worsening/no effect, so I' m wondering what long-time T sufferers think about getting into the trial? I'm scare as hell to make it worse, but at the same time, if it could help, I don't want to miss this opportunity.

      3) Therefore, what would you do if you would be in my shoes? I really need some advice please.

      Thanks
      A new T sufferer who is just willing to improve his situation
      Jean-Daniel
       
    4. OddV
      Assassinator

      OddV Member Benefactor

      Location:
      USA
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Ear Infection
      I'm in the trial... Yes, your T goes up, but it does start going back to baseline within a week. I think if you read the Q&A thread, you'll see that pretty consistently.

      Pretty sure that I got the placebo, but @NewGuy got them a bit before me and has now disappeared, so it might have worked for him.
      @tom1989, when are you scheduled for your first injections? You can always back out right up until they do it.. It's a tough decision and I understand your struggle. As you can see, I made the decision to move forward. I did this primarily to guarantee that I could get the real drug in the companion trial if I didn't experience relief from the first set of injections.

      I'm less than 3 months from onset (December 22 will be my 3 month anniversary) and I'll be just slightly over 4 months when I do the next set of injections.
       
      • Helpful Helpful x 1
    5. MichaelM
      Chatty

      MichaelM Member

      Location:
      Finland
      Tinnitus Since:
      mild since ´90 ´s. severe ->2013 on
      Cause of Tinnitus:
      Meniere´s Disease/acoustic trauma?
      Why would you start treating something you call a minor nuisance yourself?
       
    6. OddV
      Assassinator

      OddV Member Benefactor

      Location:
      USA
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Ear Infection
      I would imagine it's the fear of it getting worse.... Catastrophic thinking is a real *****.
       
    7. MichaelM
      Chatty

      MichaelM Member

      Location:
      Finland
      Tinnitus Since:
      mild since ´90 ´s. severe ->2013 on
      Cause of Tinnitus:
      Meniere´s Disease/acoustic trauma?
      What´s the price tag for these trials like?
      Maybe it´s just me and the needles but the idea of injecting something into my ear is just about the last thing on Earth i´d let anyone do to me. And i know the fact that it seems to be the only way to control peoples´vertigo attacks when suffering from Meniere´s.

      I´d give it more time. A few months with T is....well, not that much, it´s not chronic yet and when the first panic fades things might look different.
       
    8. tom1989

      tom1989 Member

      Tinnitus Since:
      11/11/2014
      exactly
       
    9. OddV
      Assassinator

      OddV Member Benefactor

      Location:
      USA
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Ear Infection
      https://www.tinnitustalk.com/threads/am-101-participants-updates-and-q-a.6558/
       
    10. Jean-Daniel Guay

      Jean-Daniel Guay Member

      Tinnitus Since:
      10/2014
      Thanks to all of you! For responding, I've been following the AM-101 post really closely as I wanted to see if there were reports of improvement for some people. What I've seen is mostly people that are stating that their T goes up and down after the injections. Based on my experience of T (onset was a month and half ago), I can state that my T goes up and down during each day and that I often experienced some sort of silence especially after training. How can you establish the real effect of the AM-101 in that case?

      Also, I have seen some reports of T lowering as a result of time (especially early after onset). The study results also reported some improvement from the placebo group. Therefore, the efficacy of AM-101 might only be related to some kind of early recovery. I would like to know your opinion on that.

      I'm still torn as to whether or not I should participate to that study. It has already been a rough month and a half being a new father and trying to cope with T. I'm now able to concentrate and work on my things. I really don't want to risk another set-back (even if temporary) if it doesn't worth it. I really don't have the time and I don't want my family to suffer from my T related-anxiety again. People at the trial center called me and I have my first appointment on January 6. I still don't know what to do.

      Again, if some long-term T sufferers could share some of their knowledge with me. I really need some answers and support. Should I expect T to get better on it's own in the next few months? Or would you try anything (including the AM-101 trial) to get better as soon as possible?

      Thanks a lot for your help,
      Jean-Daniel
       
    11. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I do not see it as a dilemma but as an opportunity.
       
      • Like Like x 1
    12. MichaelM
      Chatty

      MichaelM Member

      Location:
      Finland
      Tinnitus Since:
      mild since ´90 ´s. severe ->2013 on
      Cause of Tinnitus:
      Meniere´s Disease/acoustic trauma?
      You should expect, actually. It´s a new thing for you this T business. Give it some time. Most of the folks habituate nicely. And it is pretty normal to hear some easy mild eeeeeeeeeeeeeeeeee or so. nothing wrong with it. if the sounds from the daily surroundings mask it and you only "notice it in a silent room" like many many many are saying.... you will get used to it if you ask me.

      Would i try anything? no i would not. injections are one of those things. Not until proven to work 101%.
       
    13. Jean-Daniel Guay

      Jean-Daniel Guay Member

      Tinnitus Since:
      10/2014
      Based on the reports of the forum, it does seem like an opportunity to get a needle in the ears and some nasty symptoms for a while. I don't see a lot of positive results on T improvement.
       
    14. Jean-Daniel Guay

      Jean-Daniel Guay Member

      Tinnitus Since:
      10/2014
      Thanks, Michael M. Your feedback is really appreciated. For the moment, I only notice my T when I'm tired in quiet environments or when I think about it. I feel it is still getting slowly better, even if today seems to be harder as it was very loud when I woke up.

      I just don't want T to ruin my life as it has been ruining the month following onset. Thanks again for your feedback. It is really really appreciated! :)
       
    15. MichaelM
      Chatty

      MichaelM Member

      Location:
      Finland
      Tinnitus Since:
      mild since ´90 ´s. severe ->2013 on
      Cause of Tinnitus:
      Meniere´s Disease/acoustic trauma?
      You´re welcome, friend.

      I have had so many "different T´s" during the last few years, in loudness, in tone, frequency, pulsatile one (that was a nasty Beast! Pushed me to me extreme limits mentally), dual-tone, three-tone, fleeting (and these are sometimes ridiculously loud ones), fluctuating.... it varies a lot for me.
      It´s absolutely natural to be afraid, scared... any feeling is natural. That´s the human being in us: less or more afraid of the new things, especially when they are not friendly things that appear.

      And then there´s the "think positive" liner. i´d like to believe that it works for the new guys and girls, but not for my old Meniere´s sufferer self anymore. Sleep good, eat good, exercise, see you friends. take your stress levels down, dont "think with your T". try to live as normal as possible. T might stay or fade away. Enjoy the moment and never give up.
       
      • Like Like x 1
    16. OddV
      Assassinator

      OddV Member Benefactor

      Location:
      USA
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Ear Infection
      @Jean-Daniel Guay my opinion is to keep your January 6th appointment... It's a worthwhile experience and you won't get the injections then. In fact, just getting this first appointment doesn't guarantee you getting on the trial, so I'd go anyway.

      If you're accepted, they'll give you an electronic diary to fill out for 2 weeks and then you'll go back for your injections... You can back out right up until the last minute.

      By going the above route, it basically gives you another month to make up your mind... If you back out now and then reconsider, it might be too late as you have to be less than 3 months from onset. Just my $0.02.

      If you do decide to do it, please feel free to hit me up on private message and I'd be happy to answer any questions you might have.
       
      • Agree Agree x 1
    17. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I wonder if you would mind explaining what you base that on? Do you mean that - as an alternative - some kind of oral medication would (possibly) be safer? Or something else?

      The placement of eartubes, as an example, is the most common surgical procedure performed in children - of all surgeries (not just ENT related surgeries). So the intratympanic injection itself is essentially risk free (otherwise it would not be performed to such a large extent in related interventions). As for the AM-101 procedure itself (ie. the drug and the medical IT-procedure), it was determined in the phase-II evaluation that:
      As for efficacy, it was shown that:
      So it seems to me that enlisting in the trial would in the worst case scenario end up with a status quo result; best case, an improved result. Would you agree?
      I agree that tinnitus may not be chronic yet in this case. But with AM-101, there is such a thing as a window-of-opportunity. If a person waits until the so-called "chronic stage" before deciding on joining the trial, it will quite possibly be too late.
       
      • Agree Agree x 2
    18. Asian

      Asian Member

      Tinnitus Since:
      4 weeks
      Even i feel the risk isn't worth it. Maybe yours is a kind of T that will largely vanish in a year? Who knows. Why bother messing up with it if it isn't bothering you that much. Dont give it unnecessary attention just because AM101 is supposed to help you with this. You get my point?

      So even if you get the temperory spike like all of us you will unnecessarily freak out that its because of am101 and it goes up and down and you start observing it more and anxiety and you get into that ugly vicious cycle. Maybe watch for a couple of months and see which direction your T is going and whether you are bothered by it or not and then think about such treatments. You are new, i am sure you will not need any help and you will get over it. Good luck. Peace
       
    19. MichaelM
      Chatty

      MichaelM Member

      Location:
      Finland
      Tinnitus Since:
      mild since ´90 ´s. severe ->2013 on
      Cause of Tinnitus:
      Meniere´s Disease/acoustic trauma?
      hi there.
      by all means... as i said: it´s me and the needles when it comes to tinnitus. Here we have guys with some weeks of T. what is that? well.... nothing. How can they even know what´s going on and yet they are rushing for some trial treatments. Understandable but also worth mentioning that it´s good to calm down a bit...

      Should there be the "C" (cure) with some ear injections, yes i would take it if it´s 101% certain. Before that i wouldnt bother. All the others are free to inject anything they like into themselves.

      One doctor recommended gentamycin injections for me.
      http://www.dizziness-and-balance.com/treatment/ttg.html
      Mr. Meniere likes to spin me around for hours sometimes.

      and in many cases those shots actually do some tricks to vertigo attacks, yes indeed. but I am not going to take them. Again, its me and the needles. A needle into my head is like a phobia to me. I´d rather suffer some vertigo attacks every now and then.

      Trial pills? that depends on adverse effects.
      I take betahistine for Meniere´s but it seems totally harmless and i find it hard to see if it´s helping at all.
      And again: all the others can do whatever they like. It´s great that some are willing to volunteer. Respect and hat tip to that.

      I wouldnt agree.
      again, that´s just me. worst case scenario? T gets worse or some other, new problems appear. I have just enough ear-related problems for me. T is just one of them. In many ways i am in the wrong forum but i see Tinnitus as my main tormentor.

      I have lived with tinnitus with some 20 years soon. It was the new T2.0 which was summoned with Meniere´s that got the best of me last year. Had someone told me years ago what is ahead with this disease of mine.... i wouldnt have understood.

      my T is sometimes like a fog horn or a jet engine with a dog whistle flavour in it. It´s so loud sometimes it´s hard to actually see with my very own eyes what´s in front of me since the brainfog hits and i get tired too easily. It´s like a curtain of smoke pulled down i have to try see through. The longest phase with this lasted some 10+ weeks. I started hearing noises. I became angry and felt hopeless to the point of suicidal thoughts. I was "done". MD gives these kinda periods... the duration is unknown when it starts. Could be a day or could be months.

      Finally it calmed down to what i like to call my base camp. Not symptomless, T there as always, pressure in the ear with some mild feeling of pain in the inner ear or somewhere there, but i can manage this somehow. During those hellish week the best is to lie down on a sofa and try to gather some energy to move on. cant lie down for weeks so it makes life a bit "interesting" sometimes. But that´s another story.

      Took myself some years to get used to that normal, basic T back in the days. People do habituate to it. I did, too.
      The first weeks are the worse, naturally. That´s why it´s good to try stay calm.

      To my new T i cant get used to anymore. i know my limits and capabilities with T and Meniere´s all too well.
      i just try to get by somehow day by day. What has helped me the most with MD is time, talking and perhaps the AD-pills called buprobion hydrochloride. MD has been a total game changer for me.

      All the best and a happy new year.
       

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