New "Victim" Here

Hi,
My name is Paul. I came down with Tinnitus in June 2014, after photographing a speedway event...despite wearing ear plugs. I went to my local gp and he said my ears were full of wax (I need to get this done every couple of years or so). After syringing I still had ringing in my left ear. He told me it could be permanent. A visit to an audiologist showed I had some high frequency hearing loss in both ears...more in the left ear. A 6KHz notch is causing tinnitus in my left ear. I went to a ENT in July 2014 who told me he expected my Tinnitus to go. It's now January 2015 and I still have it. I've tried antidepressants, but didn't like the side effects and they didn't seem to do any good anyway. I am a high school classroom music teacher and have become very depressed due to the Tinnitus. I try, however, to remain positive but am feeling hopeless at this point. Some days the Tinnitus is barely noticeable, maybe once or twice a week if I'm lucky. I'm on school holidays at present, but the Tinnitus has actually been worse despite trying to keep myself busy. I play sport each week and eat healthily. I reduced sugar to almost nil, and don't take alcohol. I now weigh 66kgs...normally 72kgs (a flatter belly...which is good...never had a weight issue My anxiety seems to make it worse. I've seen a psychologist but that didn't help. I've researched all the so called cures...revers my tinnitus is the latest one...almost purchased it except that it seems like a scam. Not sure how long I can cope with this.

 

My friend, if you have days where you barely can hear it,you will cop with it sooner or later. First days are hardest to adjust, just let time go by and will think about it less and less until it becomes like wearing glasses, they are on your face but you don't think much about it.

 

Hey Paul:
Yes, I understand how your feeling also. I've had my tinnitus since 11-8-14. Fairly new, but I've had so many bad days and felt so hopeless and depressed. I took sleeping pills to sleep, and was on some anti-depressants, but after the bad side effects, I decided to get off all the medication, and try to cope naturally. It's been a roller coaster ride of anxiety and sleepless nights, but I told myself no meds for now. Was getting a feeling of hopelessness, However, I recently met a few tinnitus sufferers who also had severe tinnitus and have habituated completely. They still hear the tinnitus, but they tell me they said they don't notice it anymore and its at the point where they need to actively think about it to hear it. One has a loud hissing noise and the other has a loud high pitched ringing in her ears. It's amazing how they both habituated to the tinnitus and now live fairly normal lives. They both couldn't sleep for up to 6 months or more, and both were so depressed and had high anxiety. When they tell me their stories, I get so inspired , and I think to myself we just need to give it more time. We also need to help ourselves habituate by either seeing a therapist, and also using any tools (ie. sound machine, hearing aids, etc.) to slowly help us habituate. These two (2) women were in the exact situation and mind set we're in right now, and they slowly trained their mind to put their tinnitus on the back seat and not bother them anymore (AMAZING!) I told them, "Well my tinnitus is probably louder than yours". And to my surprise, both had extremely loud severe tinnitus. They told me, "I know you may not believe it now, but in a few months, your nervous system will begin to calm down, and then you'll be able to slowly stop thinking about your tinnitus. Once this happens, you'll be able to sleep longer hours, then everything will begin to fall into place again. I know this sounds hard to believe, but if you read a lot of these emails, you'll see so many tinnitus sufferers out there habituate and begin to live normal lives. Easier said than done right? Trust me, I'm exactly where you're at now. And I'm a little skeptical too, but if others can achieve this, then so can you and I. Let's do this!!

Mark K.

 

T at 6KHz is a very good one for notched music therapy. Give it a try, it has helped many. Tinnitus Pro iOS app is probably the best and easiest way to do that.

 

Thanks for all the replies...I guess time will tell. Today has been a "good" day...still there but not so loud. My diet is pretty healthy. I've cut out sugar (used to eat a lot of sweets), hardly drink alcohol, and I eat fresh fruit and vegetables all the time. I've lost weight (especially around the stomach area...which I'm pleased about). I'm normally around 73 kgs, but now 66kg. People say I look good, but I don't want to lose too much more weight. Perhaps it's the anxiety as well that has caused the weight loss.
James: Thank....hopefully you're right, and time will be the "healer".
Mark: Thank you for your honest feelings and words of hope...I'm sure we'll come out ok at the other end of this long tunnel. Every night I hope that the next morning will be the morning where I don't hear it any more...it's hard to accept the fact that it may be permanent. I've read somewhere that some people's Tinnitus stopped after a year or even two years...let's hope we're all lucky one day.
Sound wave: Thank you...I'll check it out. Neuromonics is something I checked out recently...but they want $6000 for a mp3 player that is programed somehow, and only reduces the Tinnitus after a year or so.
Cheers,

Paul

 

If you're already having good days, you'll soon be having good weekends and weeks. You'll be alright. You've just got to let time do its thing.

 

Hey Paul:
We'll start to have good days, then good weeks, then good months, then good years. The tinnitus sufferers I've talked to here in Hawaii were all in our situation, and now they're enjoying life and doing very well. They sleep normal and live normal happy lives. We'll get there. I'm positive.

Mark K.

 

I agree with others here. So much re. healing from tinnitus involves trying to stay calm, engaged and letting time pass. We all habituate at different rates. So don't get discouraged if someone here says they habituated in six months and its already been a year for you. The important thing is to stay positive and believe that yes, some day you will get there, too.

Its hard in the beginning because hours seem like days, days seem like months. But that does change, as @Mark K. said.

Also, @Paul Burdett, if you are considering Neuromonics: I just finished the one-year program. Make sure you choose a quality provider if you do this treatment. A lot of ENT offices now say they are doing Neuromonics but really just hand out the device and tell you good luck. You should be getting professional guidance along the way.

I am pasting in below a long post I did on Neuronomics recently. TRT is another sound therapy option, less expensive than Neuromonics but still a few thousand bucks. Plenty about TRT here at TT, just do a search. Given that you don't hear your tinnitus that often, I would think some cognitive behavioral therapy to help with your reaction to tinnitus might be a better, less expensive fit. But I am not a doctor and this is just my opinion.

Below is my Neuromonics post, which may answer some questions for you. Good luck.


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.

 

"am feeling hopeless at this point. Some days the Tinnitus is barely noticeable, maybe once or twice a week if I'm lucky. I'm on school holidays at present, but the Tinnitus has actually been worse despite trying to keep myself busy..... Not sure how long I can cope with this. "

Hi Paul, welcome to the forum. Sorry to hear you are suffering with T, but that it usually when T is new. You are still in your first year. Don't despair. T is unpredictable, especially newer T. Setbacks are common. Keeping yourself busy (without stressing) is good especially when you are busy with things which will rejuvenate the tired mind, such as pursuing goals or trying new interesting hobbies. Stay positive. As others mention, having quiet moments already is a good sign your T will improve. Keep that positive thought in your mind.

One thing about tinnitus suffering is that the initial phase is the toughest stage. Most of the time for a new T sufferer, it is hard to accept the T reality and its sufferings. They tend to mistakenly project a catastrophic future based on the current condition which may be the worst stage. But do remember one thing - acceptance takes time: habituation also takes time. Not many recovered T veterans can say they accepted their T right away or habituate speedily. Things take time when it comes to recovering from T. The members from Hawaii who Mark talked to attest to this truth. People's perception of T can change to the better over time because of neural plasticity of the human brain. That is how people moving from a quiet country side can learn to adapt to the noise of a busy city over time, especially faster if there is no painful emotional resistance to the changes.

Your reaction to T now may not be the same given some time. So it is wise not to project your future based on your current condition. If you read enough success story, for those who have recovered while their T stays the same, you will discover one similar theme - T may not change but people's perception of T can change over time for the better due to neural plasticity, which allows them to habituate to T. So keep this in mind. Don't believe in the many distorted, catastrophic thoughts about the future. Let the future be the future. It is not a reality yet and it may not as bad as you project based on current condition. If in few years you are going to be ok like others, why suffer so much needlessly in between now and then? So I encourage you to stay positive about the future. Read up the Positivity Thread and the many success stories and you will know T is not an end game.

 

Thank you all again for the words of hope. Yesterday was one of the better days...today not as good, but I'll try to remain positive. I'm glad I found this forum. Since getting T I've been amazed at the number of people I know who also suffer. I am a classroom music teacher at a local high school, and one of the instrumental teachers I work with (a brass player) has had it for years...I didn't know until he told me after finding out I had it. He told me that he just ignores it. Another friend has had it for many years after being exposed to loud factory sounds over a long period of time. He's 62 (I'm 61)...his is pretty constant...the other day he told me it was "raging". I guess that is the scary part...thinking that it could go on forever without letup. In my case it began after a single day at the speedway with very loud cars, and I was wearing ear plugs!
I'll continue to follow your words of hope, and remain positive. When I went to the ENT in July he told me that he felt it would eventually go, so I'm going to keep that in my mind. Thanks to all here for your support...I hope we all have great outcomes.

 

Hey Paul ,
This is very helpful site and it has helped me in many ways .These guys are right and you are getting some of the best info about T here because we are the ones that have it ,and have researched it,keep up to date on the latest treatments and if there is a cure you better bet it will be posted here, to everyone on here you all have all possibly saved my sanity,
Paul,
Did you know before you got T how you would feel with T.Since nobody here could relate how T would make them feel before they got it ,then like some on here have told us newbies we can't know how we will feel when we habituate to T .From everyone I've seen on here after a while it will happen.Or it might go away or subside .My ENT at the SHEA CLINIC in Memphis TN told me eventually the brain ignores the threat of T and then you can start to phase it out just like a clock on the wall or glasses on the face. I too I'm a musician ,play sax ,piano,guitar been in so many bands, studio owner many years.I blamed my years in music at first but as you know ,once a musician it becomes part of your life and a very precious one.I still play and write music as a hobby, it helps me take my mind off the hissing.In 11 years when I'm 61 I'm gonna look back and think ,why did I get so stressed about tinnitus, when it was my choice, to or not to.Tinnitus from what I've seen so far is a mind condition if no physical condition is the cause then, your mind is your biggest enemy ,or your best hope for Habituation,


Good luck and I hope you Possitive vibes as I do every one here on this site (Mike)

 

I can second this. I've read a few of the studies on the efficacy of notched music therapy. The results are very good for those with T < 10 kHz. The researcher I contacted suggested a more narrow notch is better than a wider one.

 

Thank s Billie for your kind words and support. I guess time will tell. As I mentioned above, I have a friend who has had T for many years...last time we got together he said his T was "raging"...so I guess not everyone habituates?
In any case my T is interesting (or not). I would say that I don't have more than two "bad" days in a row (by "bad" I mean loud!!) the other days it's there but, like today, audible but I'm able to not get stressed by it like I was yesterday.
Let's hope 2015 brings us all a little closer to a "cure"...it's got happen eventually.

 

Hey Paul:
I was wondering, on the bad days, do you know if something may be triggering those bad days? Medication, Weather? Diet (Caffeine, Salt, Sugar, Alcohol). It seems like your doing good job watching your diet, so I'm pretty sure its not the diet. Do you keep a journal? I've been writing down every day what I eat, sleeping patterns, exercise recreation, etc.) and how my ringing was for the day. Hopefully, I can better control my good days and limit or have no bad days, based on seeing any trends. So far it seems to help me, because I believe salt is a big trigger for me. I've also been using the Widex Zen program hearing devices. I've only had it for a week, but it really does help me throughout the day. I don't keep it in my ears all day, but just during noisy areas (ie. mall, restaurant, etc.). It really seems to take my minds focus off the ringing, as it focuses on the fractal tones. The great thing is these hearing aids are so small, that no one can see them, even when I tell them I'm wearing them. You can hold conversations, talk on the phone, because you can control the volume, types of tones, etc. with a small little remote control about 1 inch by 1/2 inch in size. DID I MENTION NO ONE KNOWS YOUR EVEN WEARING THEM. It's really been a God Send, since there are a lot of times during the day, we wish we had something to but in our ears, when we hear the ringing getting louder, or if we find ourselves in a noisy environment or worse a quiet environment. This program works under the same philosophy as the Neuronomics and TRT. Basically, redirecting your brain to listen for other noises, and eventually not noticing the ringing anymore. My audiologist told me to wear them minimal 2 hours a day, and also sleep with them on. Which should also help me to sleep at night. I've used it at night for a week, and I did notice, that it does take my mind off the ringing at night, and focus more on the fractal tones. Hopefully, after a few more weeks, or a month, I'll be sleeping longer more consistent hours. I think if you start any program, it's going to help you tremendously.

Have you tried anything to help you habituate in the last year? My suggestion is Widex, Neuronomics, or some type of retraining therapy. This will help you habituate, and maybe a lot faster than normal. I would also suggest to see a therapist to help you through your habituate journey. A therapist/psychologist/psychiatrist, will do wonders in habituating you along with the other devices. Now, I haven't had my tinnitus that long, but the success stories I've heard, and the tools and counseling that are out there now, gives all of us a huge advantage to minimize the ringing and put this nightmare behind us and let us live a better more normal life. I know its easier said than done, But I know we can do this. But you need to get the correct tools, support, and counseling to get us to the promise land.

I was lucky, my psychologist is a tinnitus sufferer for over 20 years. Her tinnitus is a high pitch ringing (like a dog whistle) and she habituated to her tinnitus in her first two years. She was exactly like us, she couldn't sleep at night, she was depressed, had high anxiety. But she habituated really well. So much, she went to college and received her BA and Masters. She can still hear the ringing, but it doesn't bother her at all for over 15 years. She sleeps 8 to 10 hours a night, takes naps during the days, takes vacations with her families. Definitely gives me hope in habituating like she has.

I have faith in you, but I know I couldn't be successful in habituating without the tools available and the counseling.

Hope this helps..........

Mark K.

 

Hi Mark,
Thank you for he reply and info. I decided to try to remain as healthy as possible, so I cut out sugar (I used to eat a lot of sweets, ice cream etc), salt...no caffeine or alcohol. I also play squash every week, swim and walk (my passion apart from music is photography, so I get out as much as I can). I was starting to get a bit of a belly, but I've lost 6-7 kgs and my stomach is fairly flat now, which I'm happy with. The weight loss could also be due to anxiety? I did get to spend a few sessions with a psychologist, but despite being a nice guy, I didn't get much out of our sessions. However, I did start to keep a record of the "good" days and "bad" days...but the guy from Neuromonics told me he thought it was a bad idea to keep records as it fosters more attention to the Tinnitus. However, this is, I guess, different from what you're doing. I can't seem to pin down any "triggers". However, on Saturday I went to see a music trio play and I had to leave as the music was causing my T to increase...it was then quite loud for the rest of the afternoon. Sunday was a good day...just "humming" in the background, but still audible. Today it was good in the morning, got a bit worse after lunch (Subway) and then calmed a little in the late afternoon. It's now 8.30 pm and it's audible again (but not loud) and seems to be in the "middle" of my head! I really think that trying to be calm and focusing away from it is the key, as well as time. The advice I've received from yourself and other forum members is comforting.
I've not heard of the Widex Zen program, but will check it out. I'm back to school next Wednesday (three student free days) and then start teaching on the 27th Jan...this will be tough, as I had lots of bad days last semester, and trying to concentrate in the classroom was so difficult with the T blazing away. However, there were days where it was almost not there...so here's hoping that there will be more of those "quiet" days...I'm sure there will be. I'm a guitar player (classical) by trade, and I find that playing guitar focuses my mind away from the T, but loud music is a trigger.
Luckily I am able to get to sleep, and get around 7 hours before waking up with the usual noise. After a shower the T is much reduced most of the time. I'm not on any meds, and want to keep it that way. Anyhow, take care and I wish you (and all other forum members) have more relief over time.

 

Mark: Just "googled" the Widex, and there's a store 5 mins from where I live. I'll check it out tomorrow. I should say that I don't feel I have any hearing loss, although testing shows I do have some high frequency loss in both ears, but more in the left ear...high frequency loss is quite normal as we get older (I'm 61). I'm lucky that I am able to get to sleep quite quickly...I'm also learning to direct my thoughts to other things in the morning if I want to try and lay in bed for a while (like on weekends). Take care.

 

Some of us habituate and have relapses then the cycle starts again. I was demoralized when I had my first relapse. I thought I had habituated for life. I am in my 8th month of my 3rd relapse. relapses just happen, cold, stress, virus? I habituated before and can do it again. At least that is what I keep telling myself. Habituation is heaven to me.