Success: Another Newbie 6 Months Later...

Hi,

I hope I can help a few people out there who are scared and looking things up for the first time like I was 6 months ago. I acquired T in January of 2015, after a night of loud music in my home. I had a very, very anxious reaction to it in the coming weeks. Thankfully, I had support systems in place already in terms of counseling and access to medication. I used Xanax, Mirtazapine, and other meds to help reduce anxiety and get to sleep in the first 60 days. Masking worked for me initially (first few weeks), but after awhile its effectiveness waned as my brain became adept at finding my T no matter where it was in the noise. If you have an adverse reaction to T, and you probably do if you are reading this, you must seek help from a health care provider for your anxiety, depression, and sleep problems. Just do it. There is no shame in it. It helped me tremendously, and it helped me early in the process. It was temporary, but necessary.

I did extensive reading (I mean everything) the first 60 days, and decided to proceed with TRT. (Google Tinnitus Retraining Therapy) I had an option for AM-101 and decided not to pursue it, after agonizing over the decision. In retrospect, I firmly believe I made the right decision. I'm not in a position to argue this point, its a personal decision for anyone with the prospect, but one must weigh the pros and cons. Four months outside the window of entry to an AM-101 trial, I feel that I made the right decision. I applaud the researchers, but my calculus did not lead me to thinking that I was a good candidate for the AM-101 trials, although my anxiety almost pushed me there.

My first two months basically sucked. Highs and lows. Depressed and then OK, and then depressed again. Lots of problems sleeping. At about day 60 I began TRT. Sleeping was a problem, so I had no issue with wearing the devices wile sleeping to see if they helped. Within 1 week I no longer needed sleep meds. This was huge for me. I prepared myself for the fact that progress would be slow with TRT. It is. Things change month to month, and its a bumpy road.

A few months later, I found I could go days without wearing the devices, and could sleep without them. My "perception" of my T was about 10 times less after four months. Its not gone, and I am not under any assumption that it will ever go away, but yes, it seems like its about 10 times lower in perceived volume, and that's when I decide to try to listen to it. One of the amazing things about TRT is that it seems to train your brain not to care about your T. I certainly don't mean to assert that this will work for anyone else ... its my personal experience after T induced from moderate hearing loss. I am also taking B-12 ( for my own natural deficiency), magnesium supplements, and 500 MG NAC Daily, as well as a good multi-vitamin. All good stuff, but I had no improvement in the first 60 days with basic supplements, but then dramatic sleep improvement immediately with TRT (within 1 week), and then gradual overall improvement thereafter with TRT (within 4 months), while continuing with the supplements. Personally, I credit TRT with the majority of my improvements but I will stay with the supplements due to the positive studies with respect to hearing loss prevention.

T messes with your head. It really does. I live in Massachusetts, and we have cicadas here during the hot summer months. If you do some reading, you will find a lot of folks compare their T noises to cicadas. With the windows open here in August, I truly am amazed at how comforting the sounds of the cicadas are.

The big thing I hope a newbie will take away from this is that although T can come on suddenly, and cause great anxiety, and it seems like this is a horrible life changing event that you can't recover from .... In fact in many cases the brain will slowly accommodate this change. Again ... its slow ... months ..... but eventually the brain has no use for this bullshit, and that's what it is. Its an unimportant signal. It would be so much easier if we could just consciously ignore it, immediately, but we can't. Hang in there. I was there, and now I am on the other side of this crap, and hopefully you will be too, but it will take some time. My T is not gone, but my brain is no longer per-occupied with it. Life goes on, and my brain has life front and center, not T. This would be damn hard to imagine 4 months ago, but here I am, and here you hopefully will be in a few months.

Best regards,

Trebor Naganalf

 

Thank you for your post. I have just recently sent information to a Tinnitus Retraining Therapy clinic and hope that I can get in. I have been doing reading of well regarded books about tinnitus and trying to implement the suggestions but finding it difficult on my own. Glad to hear that TRT made a big difference in your experiences.

Your post provided me with renewed hope that my awareness of the T will reduce significantly.

 

Glad to hear it TMLB. Definitely read the Jastreboff/Hazel book. I couldn't do it on my own, there's no substitute for a TRT clinician in terms of helping you through the initial phases of understanding what role your brain is playing in terms of perception. Best wishes, Trebor

 

Would be interested to know the volume of your T before you did TRT.....can you give examples please? thanks

 

Thanks for your post.

 

Yes, thank you for your post. I too am interested in doing TRT (and have seen a TRT specialist a few times already) but the main thing holding me back is that I seem to be doing a little better already. I don't use anti anxiety or anti depressants anymore and I am seeing a counsellor. I also have mild hyperacusis and that leads me to wear earplugs a lot, which I find contradicts the sound therapy part of TRT. Do you have any experience with this @Engineer ? I just want my old life back as best I can. I just want to be able to go out and have fun with my friends, drive my car, play hockey etc. (while being protective of my ears) and not have to worry about spiking my tinnitus. Anyways, thanks again, this post is very encouraging to someone like me.

 

hi! i'm 13 and about three months ago i noticed a ringing in my right ear when i was trying to sleep. it doesn't bother me throughout the day, because i can only really hear it when i'm in dead silence or like at night when i'm in bed. it gets really annoying and i have no idea why i have it? like it came out of nowhere and i don't listen to loud music or anything. do you think it will go away? like i'm still really young and have a lot of my life ahead of me so i'm really scared

 

Hi @Engineer, great post, glad you had success with TRT. I personally did well with Neuromonics coupled with cognitive behavioral therapy. As you point out, everyone is different. The important thing is to try to move yourself forward as best you can.,

Did want to mention...if others are seeking help through TRT, be aware there is no central certification program for this therapy. So someone with no training at all can claim to be a TRT therapist. Do your homework.

 

Hi engineer thank you for your story. Where did you go for trt? I also live in mass

 

Hi @Engineer
I live in MA where did you go for TRT? I really need it!

 

Susie I saw Nat Bauman in Hamden Ct. He's a thoughtful, intelligent, and considerate practitioner.

 

@Engineer thanks I found one in west Roxbury the Mario clinic I'll give them a buzz (ha) tomorrow
I need relief from my reaction thx very much I can't go to Connecticut I'll try Mario! Fingers crossed!

 

I went there first and didn't get a good vibe. I wish you the best let us know how you make out.

 

@Engineer really hmmmm how long ago?

 

6 months ago. I'd be happy to talk to you on the phone

 

@Engineer where do you live

 

Metrowest

 

I'm south .....I took a pill to make me sleep but I may take up you at your offer later if that is ok!

 

Sounds good. Sweet dreams!

 

Thanks you too

 

Love hearing this. Congratulations on the speedy recovery (which probably didn't feel all that speed at the time)...

eric

 

Thanks Eric this really helps

 

Thank you for posting this - I am 2.5 months in and it has just been chaos. I do not want to take medication and can manage to get to sleep but I always wake up and just about manage 4-5 hours. I started a new job and had to give up due to the lack of sleep. I am finding it really hard to look forward to anything and feel like my personality has been taken over. Thanks for your post and I really hope that will be me soon.

 

You must have it bad like me - no escape! No sleep more than 4 or 5 hours! I am exactly like you yes........

 

Hang in there Antoinette. I'm at 9 weeks myself and I feel your frustration. -- I will be doing good but if I eat bad, it spikes big time.

Stay busy during the day and try to mask at night if you can't sleep.

Sincerely, John

 

Hang on in there all - it will get better. It just takes time, a lot of time (months) I'm afraid. Please try to get on with your lives as best as you can - don't stop doing anything because of your T but protect your ears in loud places. Your brain is a very complex thing so when things go wrong with it it takes time for it to adjust . . . but adjust it will. At the moment your brain is not used to this new sound and is treating it as a threat and is on high alert to it all the time. As time passes, and you get on with your lives, your brain will lessen it's reaction to the noise and start to tune it out. There is no way to speed this up but it will happen eventually. x

 

Hello Eric,

Did you ever do TRT? There is a program at Northwestern in Chicago but they require folks to wait 6 months.

I'm at week 9. Doing good with it but would love to speed up recovery/habituation.. Thx, John

 

No. I did CBT. Worked great for me. I'm in NYC, and was able to see @Dr. Hubbard from this site. Was an absolute godsend for me. Can't say that it would work for everyone, but it has plenty of evidence to back it up as having efficacy, and anecdotally, I'm glad I did it. I know that TRT has some pretty impressive results with some pretty tough cases. I wonder if they make you wait six months just to see if you start to habituate on your own, and don't need it. I personally didn't have 6 months to wait, giving how I was feeling. Seeing a therapist, just for a few months, changed everything for me. Of course, I might be right where I am, feeling pretty good 7 months in, without CBT. Hard to say. Could have improved just on my own. But for me it was money very well spent.

Good luck,

Eric

 

Yes, Hubbard knows his stuff.

That seems to be the consensus with a lot of the potential remedies. -- Nobody really knows if it worked or if it was just time that did the trick.

Just in case, I'm trying most everything! Ha ha.. Thanks for the quick reply Eric.

 

Hubbard was great for me. I'd recommend him to anyone. As far as tinnitus remedies, its truly impossible to know what is working, if anything. Habituation is very real for the great majority of people. So if you do anything, it might work. Stick your finger in your nose every day and drink beet juice, and you habituate to tinnitus. Swing a turtle over your head every day, and habituate to tinnitus. It makes it very hard to run any kind of a double-blind, placebo study for many things, since many people simply improve, because they improved. Everything worked, and nothing worked. Do TRT and CBT work? People swear by them. But how do you run a placebo controlled test? You know if you're receiving TRT or CBT, so its impossible to do. But that doesn't mean that there isn't evidence that these things work. (I'm really not trying to sound cynical about TRT or CBT here. I'm a believer.) These methods are generally used by people who've suffered for some time, and struggled to habituate. And they have impressive statistics for working. If you're struggling down the line, I'd suggest CBT without reservation. 4 months in, and I took off like a rocket, improving quickly. I even stopped masking to sleep this week. So far, so good.

Good luck,

Eric