Finally Stopped Lurking

[Mikey Cliff]

Hey everyone, my name is new but I've been reading and lurking since my T started in April this year. It has been pretty devastating for me. As a drummer I have pretty much lost my career so far. I am hoping I find more ways to cope so I don't lose it completely. I have been playing and teaching for 20 years. Most would say, yeah no wonder he has tinnitus, however I have been wearing ear protection for many years. I do have hearing loss that indicates it was noise induced however my hearing is fine other than the high frequency loss, my right is worse than my left. My feelings right now: I can no longer enjoy hunting and fishing. I can no longer enjoy teaching and playing as it is too loud. I find it difficult to enjoy watching TV and have gone into a pretty deep bout of depression. I was able to join the AM-101 trials, with unfortunately no luck. My T is Bilateral and loud all the time. It is also somatic in the sense that I can change the pitch when I bite down on the back of my jaw, press on my Jaw or when stretching my neck all the way to the right or left. My main reason to join was to share with others my not so successful try at AM-101. I'll be posting in that thread shortly. Also, I am here to find support as I am completely alone in this. I am single and have been pretty distraught. I am very familiar with all the treatments and types of T. I'll get more in to details of other things that occurred that may have caused my T and am hoping to learn and help share what I have learned. Already feeling a little better.

Thanks,

Hope I find life worth living again

 

[Karen]

Hi, Mikey, and welcome!

Yes, sometimes it helps just to vent and talk about your concerns with other T sufferers. We definitely understand what you're going through. I'm sorry the AM-101 trial didn't work for you. Does that mean that you received a placebo, or that the AM-101 drug didn't work?

Please don't give in to depression; read some of the success stories on this forum, if you haven't already. They will give you hope, and help you find the strength to keep going.

We're glad you've joined us, and look forward to hearing more about the details of your situation.

Best wishes,
Karen

 

[Mikey Cliff]

1. I went through 2 rounds. Not sure I got the placebo or not the first round and for sure got the drug the second round. Thank you Karen, it has been difficult especially since I was doing much better right before I got the real drug. Then boom!! super loud and right back into depression. Iv'e got a long road ahead and am looking to be successful. Having no one to talk to has really made it much worse so I'm glad that I finally have other people to talk to.

 

[Karen]

Mikey,

Sorry to hear that. But maybe the drug temporarily caused a spike, and your tinnitus will go back down eventually to baseline level.

We're glad you've joined us. You can always find an understanding person here!

Best wishes,
Karen

 

[amandine]

@Mikey Cliff

I am sorry to hear this - I really do feel for you and know how you feel.
I am suffering like you.
I am worse than alone, i live with someone who has no idea what i am going thru and keeps shouting at me. In fact that is how all this started. I put my finger in my ear to block him out with his usual shouting and insults. When i took my finger out there was a faint buzz and an ear blocked with wax. The buzz has gotten worse ever since even after having my ear syringed after using drops.
Finally he realised that i am suffering 2 months after it started an dload more stree and he was ok for a while but tonight he is back to his usual self. So i am sitting holed up in my bedroom trying to not listen to him screaming insults at me, which is of course making it worse.
I seem to be on a 2 day on high and then one day low cycle.
Please tell me where you had the trials done - are you in the uk or america or where? Did you do the phase 3 trials of am-101 and did you have the full 3 injections? Did you go for the follow up blind trials where you are guaranteed to get the real deal? Cos you say that the trials were not successful?
I have been seriously considering the am - 101 trials but cannot seem to find any real good success responses from those who have taken part in it. Which does not fill me full of confidence. But then again so many people are doing the trials and they are all very positive people and AM would not have done these trials if there was not a serious side and hope that it works as it costs a fortune to run these trials and AM has to provide the money. I know that they have got backing but they would not have had backing if they could not show that these trials had a real good chance of working - so I am left confused and hope to hear from other people and their experiences with these trials.
I have this in one side only and I too want to start life again cos right now i dont see that i have any life left. See I told you that I was feeling like you.
hope to hear from you and hope you get better. By the way, it has been known to go just as it came. Poof gone like that I have heard that for some people it disappears as it came even after having it for months. Apparently the worst thing to do is sit in silence altho i dont know why.
amanda

 

[amandine]

HI Just read your comment which i read after i posted, that you did both sets of trials so for sure got the real thing second time around.
How long ago did you get the second lot of injections? Has it gone down a bit since then? For how long had you the T before you got your injections or the 2nd lot that we know are the real deal?
Good that you are here now and able to discuss with other people.
be well
amanda

 

[amandine]

@Mikey Cliff

Would it be possible to ask you to put your results from the am 101 on the new thread which was started. It has a poll at the top of it asking better same no improvement or worse. Then people who have had the am 101 meds are putting in their progress reports as it goes on now or their experience of it. It would be really good if you could add yours please to this thread?

 

[amandine]

@MikeyCliff

Hi there Mikey, the new thread for am-101 is AM-101 PARTICIPANTS UPDATES AND Q+A
If you can post your findings with am 101 there for the forum please that would be great of you
thanks amanda
would also be a help to people who are thinking of signing up to the injections

 

[Mikey Cliff]

Hi, I plan on putting that information up. I can't give to many details yet because I don't want my information to get DQ from the trial. I will be done soon. In fact, the trial coordinators thought I was going to withdraw but did not on my last follow up. I couldn't imagine going through all that pain to have my information withdrawn. I'm American so I hope that answers one of the questions. I felt before the real drug my left ear was sooo much better. During the second injection of the real drug I new tone came in and has been there since. I also here certain sounds differently now. Things that use to help mask(fans, air conditioners) and were soothing now sound almost like crickets. This happened about a month after the real drug. It has been well over a month since I got the real drug. I had T for around 2.5 months when I went through Tact-1 the first set which may or may not have been the real drug. I'm almost positive I got the placebo because of the differences in the first and second injections. Pretty devastated because I feel the real drug as caused irreversible problems. I hate to say that I pretty much regret getting the injections. I'll post on the am-101 threads when I get a chance. It isn't easy for me to talk about it.

 

[Mikey Cliff]

@amandine sorry I wish you could get out of that situation. No one deserves to be treated like that

 

[awbw8]

@amandine just echoing what @Mikey Cliff said, no one should have to live like that. I wish there was something I could do.

 

[SoulStation]

1. I went through 2 rounds. Not sure I got the placebo or not the first round and for sure got the drug the second round. Thank you Karen, it has been difficult especially since I was doing much better right before I got the real drug. Then boom!! super loud and right back into depression. Iv'e got a long road ahead and am looking to be successful. Having no one to talk to has really made it much worse so I'm glad that I finally have other people to talk to.

Mikey - I am totally in your boat. Pro guitarist /bassist (also a drummer) who has T and is dealing with the same feelings as I have quit all my gigs but still teach acoustic guitar, piano bass and electric drums (thru a small speaker on .5 volume with ear plugs)... I am trying to find a new career in the web design / comp science field. I need folks to chat with as well who are in my shoes but I do have some tips and coping mechanisms I'd be happy to talk to you about. Message me any time and keep your head up. You will make it through this. I'm 31 and from the ny area ...where are you located?

 

[amandine]

@DannyBoy
Have you checked to see whether your ear drum has completely healed up as this may be a cause for your T problems higher now.
Please let us know
amanda
Also TMJ is not on the list for am 101 (tmj =jaw mouth teeth disorders

 

[BobDigi]

Hey everyone, my name is new but I've been reading and lurking since my T started in April this year. It has been pretty devastating for me. As a drummer I have pretty much lost my career so far. I am hoping I find more ways to cope so I don't lose it completely. I have been playing and teaching for 20 years. Most would say, yeah no wonder he has tinnitus, however I have been wearing ear protection for many years. I do have hearing loss that indicates it was noise induced however my hearing is fine other than the high frequency loss, my right is worse than my left. My feelings right now: I can no longer enjoy hunting and fishing. I can no longer enjoy teaching and playing as it is too loud. I find it difficult to enjoy watching TV and have gone into a pretty deep bout of depression. I was able to join the AM-101 trials, with unfortunately no luck. My T is Bilateral and loud all the time. It is also somatic in the sense that I can change the pitch when I bite down on the back of my jaw, press on my Jaw or when stretching my neck all the way to the right or left. My main reason to join was to share with others my not so successful try at AM-101. I'll be posting in that thread shortly. Also, I am here to find support as I am completely alone in this. I am single and have been pretty distraught. I am very familiar with all the treatments and types of T. I'll get more in to details of other things that occurred that may have caused my T and am hoping to learn and help share what I have learned. Already feeling a little better.

Thanks,

Hope I find life worth living again

I remember wondering if life would be fun again. Glad to say it does. Good luck. You'll be ok again.

 

[Mikey Cliff]

Doctor said my ears healed up perfectly fine.

 

[tyty]

@Mikey Cliff so sorry to hear about your present condition. I must admit I have wanted to try to get into trials but have yet to find out how to sign up? I have been a T sufferer now since late March 2014. My T started after a long bout with bronchitis. I found a TRT therapist her in my area that has helped me greatly understand more about my T and it's possible causes. I have finally decided to purchase hearing devices with masking capability. My therapist has informed me to never fully mask my T. I do have high frequency hearing loss but otherwise I hear fine. I was shocked at the price tag on these devices but at this point I am desperate to get relief. Unfortunately my insurance does not cover hearing aides of any kind for any reason. I have been able to sleep at night only with the help of a noise app on my iPhone. I simply place it under my pillow and it stays on all night.
I do know that at the initial onset of my "T" I was sick to my stomach, had a drop in appetite and felt hopeless. I finally contacted Dr. Nagler who assured my that I should eventually habituate. I do have reactive T and typically my T rises above most all noises. I must say sometimes I feel like my life is a struggle to get through my days. I do find that staying busy with work, exercise and social events actually help me to not focus on my T.
Please feel free to private message me anytime.

Also at @amandine I am hoping that you can possibly get help to end the mental abuse that seems to be happening to you? I agree with the responses above, no one deserves to be treated with such indignant abuse. Please try to reach out to this forum, I am usually on here daily. You need to get a support person in your life not more despressing negative.

 

[amandine]

@tyty

easy to sign up - just google am 101 trials - are you in america or europe as they are different registering sites?
Must admit that i would want to do these trials - however it is hugely far away from me and i am in france and so need to do it in french which is not a problem as my french is good enough. But the though of injections in the ears - plus so far have not read anything positive results yet from those who have participated. It says in their AM trial info that it can reduce up to 50% of T intrusion in approx 60% of people...and 10% will see an increase altho this is ''possibly'' a temporary thing altho could be permanant. Really dont know what to think....so sitting on the fence and watching and waiting for a positive response which I would have thought, with the few people here taking part, that there would have been by now...@Mikey Cliff had a bad reaction and so have some others. @NewGuy so far says that his T has gone up and he had his injections about 10 days ago now so waiting to hear from him latest report. He is due to go for his first check up appt on 30th October.

No he is not like this all the time - he is finding it difficult to know how to deal with this T problem just as i am...both at our wits end

 

[MS011]

Whoa, I can relate, I too am a musician, but do not despair that makes things worse. Get some Lavender oil and put on your pulse points when relaxing so that your central nervous system can relax.