9 Months of Pure Hell, and Now, Some Relief

[biggy312]

I want to share my current tinnitus-spike-related experience in the hope that it provides some hope for other T sufferers that don't see any improvement and get discouraged. Some brief history: I have had acoustic-trauma-induced for a long time (over 25 years). Up until around 9 months ago, I was fully habituated to my T and it did not negatively impact my life in any way. in fact, I remember having to cover up my right ear and focus in order to hear the sound. Also, when I went to sleep, I was able to do so in complete silence, and when I awoke, I was not aware of the T. Nine months ago, I had a rather unfortunate visit to a bottle recycling center, and was too close, with no ear protection (even my fingers) to a worker who dumped a 55 gallon container of bottles into a metal container. The sound was so loud for a few seconds that my whole face contorted, and I knew I had a T spike. It was a 10/10 in terms of volume, and annoyance level. I had been anxious, nervous, depressed and generally was hating life for the past nine months. Nothing that I had used to habituate prior (Zinc, Gaba, Magnesium, Vitamin B, Vinopectine, Melatonin) was working and it was getting me pretty desperate and depressed. I also had used ambient sounds to habituate (TV, Radio on all night) that did not seem to be working, as my T, or my perception of it was "above" the ambient sounds...really discouraging!

I should also note that, I had lost a job, a girlfriend, and an apartment which was probably not helping! Although, I should note that my T has not ever spiked up or down due to 'stress': When T was not bothering me, and I was habituated, stressful situations did not make it any more noticeable or worse. When the T was bothersome, also, stressful situations did not make it even more noticeable or worse.

I recently started some self-made audio notch and neuromonics treatments through my computer and mp3 player, and, after a few days of a few hours per day treatments, I have seen some improvement in that, when I plug my ears, it takes me a bit more to focus on the T frequency that has been bothering me. I have some hope that, in the next few months or so, I might be able to begin the habituation process and get my enjoyment of life back. I will continue to provide updates, with either continued good news, or (I hope not) any back-tracking.........

 

[Bacus]

Friend,
I wish u nothing but the best,
as u indicated that u had some improvement in the last few days, which is a good sign,
I am positive that u will come down to the "unnoticeable " T in a matter of a short time.
Please keep us posted of your progress and what in your opinion has helped you to habituate.

 

[Sherri786]

@biggy312 , hope it gets better for you and yes do update us, thanks.

 

[Jeff M.]

Hey Biggie312 - So happy to hear you aren't giving up and continue to seek relief!! I hope for great success for you!! As mentioned above, please keep us posted!!! Very intrigued.

 

[biggy312]

Well, I can definitely say that increased stress does not increase the (still lower) tinnitus volume and annoyance level for me. I just heard from my (now) ex-girlfriend that she has met someone new: If that doesn't spike it up due to stress and negative thoughts, i don't think anything can!

I have been continuing the few hours per day of the neuromonics and audio notch therapies, and they are continuing to work well. in fact, last night I was having a difficult time falling asleep (not due to increased T, just regular insomnia) and, when I listened to about 40 minutes of my notched pink noise, my tinnitus calmed down, and I fell asleep......So, all in all, continuing improvement on the T front, and I continue to be optimistic that there is more improvement (on all fronts!) ahead.......

 

[LadyDi]

Hi Biggy, thanks for sharing your story. Do believe that sound-based therapies, self made or otherwise, can provide relief.

But one question: You said you were doing self made "neuromonics" and "audio notch" treatments. These are patented therapies. So are you doing Neuromonics and Audio Notch? Or treatments, with no counseling or professional help, modeled on these therapies? Thanks.

 

[biggy312]

LadyDi:

I should have been a bit more specific: I have been doing my own treatments that is modeled on the neuromonics and audio notch therapies......I also had been able, in the past, to habituate to my tinnitus spikes without much outside assistance. However, the current spike that I am trying to tame is taking a lot of effort!

 

[LadyDi]

Thanks for the clarification. I am doing Neuromonics but know there are others here who have gotten relief with DIY treatments. Best of luck to you.

 

[zola]

how does t react to intercourse?

 

[sanjay doodani]

Friend
Sorry to hear you lost the job and girlfriend I am sure you will improve try starkey xino tinnitus

 

[amandine]

@LadyDi,

Hope you are doing ok.
Just wondered if it would be ok to ask you if the Neuromonics helped or not? Were you on it fo long? together with the counseling? Please let me know - hopefully and if you dont mind telling me thanks amanda

 

[DebInAustralia]

i discontinued neuromonics after 2 months, as i felt i had habituated...

i am starting it again as i am feeling more bothered by my tinnitus lately...

 

[amandine]

@DebInAustralia

Thanks for your reply.
Neuromonics is really expensive I think - it seems that it worked but not really. So you have to pay again to do it?
When you say starting again - do you have to go thru the whole procedure again of them finding your tone plus with the counselling therapy? How do you haituate - is it just by playing masking music all day long on an mp3 player?
How intrusive was your T? Did it get worse until doing the Neuromonics? Did it get better doing the Neuromonics or was it just natural habituation? How has it gotten worse now and can you not play it to yourself again or is it a special machine that you use that you have to give back to the neuromonic people when you have finished? IE do you have to start again from the beginning?
Did you ever find that your T went down on some days and then up on other days?
How do or did you cope with sleeping problems if any?
Thanks for your info if you dont mind me asking you - I could do with all the help I can get here cos I am beginning to fall apart here.
amanda
thank you for all info and advice
amanda

 

[LadyDi]

Hi @amandine: Sorry, I am just picking up my alerts now. I don't come to the board quite as often as I used to.

So Neuromonics (and I am happy to answer any questions, no problem). The below basically is my opinion and my experience; others may have had different results and different opinions. Quick background: I have tinnitus in both ears, started in June 2013 following barotrauma (due to an untreated sinus infection) experienced during a long distance airplane flight. My tinnitus triggered extreme anxiety and panic attacks, although I had no prior panic disorder history.

I started the Neuromonics program at a university clinic near me in late November, 2013. It was expensive: about $5,000 USD. My insurance did not cover it. The program runs for a year, so I will be finished in early December. I think my audiologist and the staff has been top notch. I have the Oasis device, the top-line one.

Here are my thoughts regarding your questions, and some others you might ask:

Did it help? Yes, I think so. They do repeat tests as you go through the program (I will post the numbers when I am finished in December). Mine show my disturbance level, pitch and loudness perception all have dropped. My anxiety levels have dropped to the point that I no longer take day time medication (only rarely, as needed, and my night time dose is very low). I am less conscious of my tinnitus during the day, it just doesn't bother me as much. And on days when I find it annoying, I listen to my device and it calms it down.

So is this all due to Neuromonics? Or simply the passage of time and natural habituation? I'll never know. Part of me believes that with some do it yourself sound therapy, this would have happened on its own. I think one thing Neuromonics gave me was some sense of control, the feeling that I was helping myself. That's pretty important in T's early stages, when you can't grasp how this awful thing has happened to you. But there probably are other, less expensive ways to achieve that feeling.

Did I have the counseling with Neuromonics? Yes, I did. And it was helpful. But I will say that the counseling component of Neuromonics is not what I hoped -- and I went to a good provider. Your sessions get pretty far apart as you progress in the program and most of the counseling deals with coping tips and tinnitus education; it's not true talk therapy. I know other people who got their devices through their ENTs that said they were just given a short first lesson, handed a book and told good luck. I coupled my Neuromonics treatments with doing cognitive behavioral therapy (CBT) with a psychotherapist on my own (and at my own expense). I think that was critical for my success.

Have I been in the program for long? I committed myself to a full year when I started and recommend others do the same. Two, three months is not enough time to figure out if the program is doing you any good; I was at almost three months before I noticed any difference, and my audiologist told me I progressed more rapidly than some. And you already have paid for the program in advance. I suggest sticking with it.

Do I feel like I have habituated with Neuromonics? I feel like I still am working on it but getting close. One thing to remember: Neuromonics WILL NOT make your tinnitus go away. My audiologist was very clear from the beginning that was the case. You still will have days were its annoying and you wish it would go the hell away. I will say that Neuromonics has helped me manage my tinnitus much better. I am able to do pretty much everything I did pre-tinnitus. But if a cure or even something that gave me decent noise reduction came along, I would take it.

Should YOU try Neuromonics? Can't answer that. I think it all depends on how much it bothers you, the type of tinnitus you have, if you have the money, if you feel capable of first trying your own program with some DIY sound therapy and CBT. There are no large, independent clinical studies that show Neuromonics works. On the other hand, there aren't any such studies showing success with anything else. I think its a matter of deciding where you want to put your treatment money -- or if you would rather save and hang on for something more promising. Sound therapy, in my opinion, can take you only so far.

Sorry this is so long! Hope it helps. Feel free to PM me if you have any more questions. Good luck. You still are very new to tinnitus and I am confident you will find something that will help you.

 

[Lisa88]

@LadyDi
Thanks for your account. Just wanted to be clear - so you have experienced some reduction in volume perception? i.e your t appears quieter overall than it used to be?
Cheers, Lady Di. So glad you are doing better. Great news

 

[LadyDi]

Hi, @Lisa88:

According to my tests, yes, I have experienced some loudness perception reduction. But I have to say, such tests only capture how you are doing at that moment in time. Some days, my tinnitus still seems pretty darn loud. Others, it is pretty quiet (but never really gone). Sometimes I feel like I have not improved as much as my test numbers imply.

If I had to give a short answer to your question, I would say, yes: overall, I have had volume reduction. But its hard to tell if maybe I would have been feeling this way, 16 months after my tinnitus started, even if I never picked up a Neuromonics device.

I mostly notice a big difference in my attitude and ability to cope. But again, how much of that is owed to Neuromonics? It's a tough decision to make, especially if you don't have $5,000 to spend. I would hesitate to tell someone to take out a loan, or deplete their savings, to do this. I might try some other coping mechanisms, hang in there and let time do its work. On the other hand, if you are in panic/extreme mode -- and I was -- just about anything seems worth it to feel better.

And thanks for your kind words, Lisa88. I AM better. I hope for better treatments but can hang in there until they arrive.