The Positivity Thread

@AnneSusan


Welcome back...I hope your road to habituation is VERY short. May I ask what caused your hearing loss? I have hearing loss in both ears but more so in my left.

 

I always enjoy looking at pretty photos. I makes me appreciate the world around me, as well as make me want to go out and check some of it out!

Heres a photo from the forest near my house. I love it in there

 

positiv is:
sometimes i read in the internet there is coming a drug in 5 years to cure a tinnitus:
http://www.fotos-hochladen.net/uploads/img4453uw1nmx6fik.png
http://www.fotos-hochladen.net/uploads/img44544kja60bcp7.png
do you think is that true?

 

That is some positive news but the report is quite scanty of detail. Is that AM101 or Autifony? Hope they can come up with a magic pill which will help the severe sufferers.

But in the absence of an immediate cure, what can suffering members do? There are alternative treatments which may not cure T but can hopefully help them cope with T better, those like TRT, CBT, meditation/relaxation exercise, diet and supplement or even just living your life again & pursuing your hobbies.

Do the people who are living a normal and enjoyable life after T still have loud T? You bet, at least I know myself and some of the T veterans still have loud T. Last week I was fishing in the rapids of a salmon river and I could still hear my ultra high pitch, high-energy, laser-beam like dog whistle T above all that raging rapids besides me. Yet I didn't give a dime to it. I had a great day fishing and instead of panicking for the sound I live the day in positivity.

No way this was possible 5 years ago when T & H first started. Back then no amount of will power or positivity could stop my nerves from caving to relentless anxiety and panic attacks to this sound. Not now. I can face the same ringing now without negative emotions. Did time do the magic healing? I don't know. It is up to others to debate. But the essence of time, accepting the reality of life with T (if not T itself), flowing and adapting, remaining positive and hopeful, these are all very important ingredients of success, as can be felt in reading many success stories.

Fishing the Capilano River in Vancouver:
https://www.google.ca/url?sa=i&rct=...D3TIOMU4O3vGJqJ5qQPC49Xg&ust=1412449284597783

 

Thanks for your post Dave. Just wondered with Neuromonics, 5 months into treatment, is the volume perception of your t lower, do you think? Cheers.

 

here's a trip - I hurt my back badly at the gym. The pain of the injury made me forget amount the tinnitus. Go figure. This was even more interesting when I took anti-inflammatories which made the tinnitus worse - so I noticed it more - it wasn't annoying due to my focus on the pain. PS - dont take anti-inflammatories as they will make your tinnitus louder. Everyone seems to know this but me.

 

@Davo

Yes, ibuprophen makes my T much louder. But, for me, the T eventually went back down. I am sure it will for you as well.

 

I didn't know this either @Davo! The ringing caused by anti-inflammatories eventually went away for me. It took a while though, about two months.

 

Greetings fellow Positivity Seekers.

I only contribute to this thread because I cant be arsed reading misery.

First up let me say that I have straight forward sound trauma induced tinnitus. And I had some previously. I do not have any other complications - my empathy to those who have.

I continue to use Neuromonics AND stay in touch with my Audiologist. My score on the TRQ was about 65 at first then down to about 45 then last week down to about 25. I say "about" because that was the score on the day and it would vary a few points from day to day. I think that less than 17 is considered clinically nonsignificant (correct me if I am wrong). Now I realise that the TRQ has its flaws like any other questionnaire and I know, as a psychologist, that one questionnaire is not enough to make a clinical judgement but I do believe this is a positive sign.

I have good days and I have not so good days. I don't notice the good days because there was nothing to notice. I notice the bad days because I realise that the day before for good. It is a dance for one.

A couple of people have asked me about the volume of the tinnitus using the Neuromonics device - ok, the tinnitus annoys me less because I notice it less and hence when I do it is not as loud. All totally subjective responses but what else do we have? ALSO I AM LOOKING FOR IT LESS . (sorry to shout). I believe that if I want to find it I will. Indeed my "attitude" to it has changed. If you WANT to notice the colour yellow then you will find it everywhere - try it.

Again I want to repeat that the quality of the relationship you have a learned audiologist is half of the treatment. There are good and there are not so good health professionals. The number of times I just sat there and moaned asking for reassurance and got realistic empathic answers to my concerns , felt assured and progressed. As a psychologist I can tell which patients will and won't get better fairly quickly - it really doesn't matter what I do or say, if they are too heavily invested in their unhappiness they won't get better. If a patients says "I'm not better yet!" I would have to address the underlying belief about what they believed the miracle cure would be and how they would be at the end of "treatment". I cant make someone someone else or take away their crappy childhood, only help them to deal with life more effectively so they are not living in the past.

It is easy to be cynical about the motivations of research companies. In fact cynicism is one of the easiest responses we have - dismiss everything and abandon hope. Objectivity is for adults. This is a world wide medical condition which never loses focus in research. There is tonnes of money to be made and you bet they want to make it and one who gets the best treatment gets the most cash. So yeah they want to make cash but they won't make cash if the treatment doesn't work - that is what the FDA is all about. Tinnitus is invisible - like depression and anxiety (the two biggest issues in psychiatry) but the COST of mental illness is high re lost work and health complications. Drug companies who make antidepressants make a lot of money because despite your attitude, objectively antidepressants WORK.

In my life, I am 50, I have had many personal traumas as a result of the small mindedness and indifference of others. Those traumas have left a scar but those scars have not defined me even though they still hurt occasionally and limit me in SOME ways. Do I go out looking for more scars? No, I avoid those people and those situations. AND when I do encounter them the worst they can do is leave scar. Tinnitus is a trauma and it has left a scar. It has "changed" me but it hasn't defined me.

Below/attached is a pic of me my first stage production in 28 years. I can tell you honestly that had I not gotten tinnitus I would not have gone back to theatre looking for passion and fun as an antidote to sitting about listening to cicadas in my head.

Strength and patience to you all.

 

Constant Tinnitus- Four Things That I Do

Hi,


Well, I woke up about 18 months ago in the middle of the night and a high pitched alarm was going off at the neighbour's house. After two trips out of the front and later the back of the house, in my undies at three in the morning, when I returned to bed for the second time I made the discovery familiar to you all- the sound was in my own head. After a visit to the doctor, a course of antibiotics, a hearing test (damaged) and a brain-scan (all clear, just the personality that disturbed the experts), I know I have tinnitus for life.

So, I wanted to share some of my own tips, 18 months down the line.

1. Accept you have it for life. But in despair, remember- no-one can say there won't be a cure one day.

2. Learn to "cast" the sound. Depending what kind of sound it is, imagine you can throw it to a boiler, a light, the central heating, and then realise that it's coming from that place.

3. This one is for people when spending time alone. The world can be pretty much transformed when you interact. So, if you are alone in your thoughts, and you find yourself distracted by the T, remember that this kind of distraction is temporary. It doesn't cure the moment, but never forget this. When your voice comes into the equation, you are back to your old self, so don't start worrying about getting stuck in to the real world at all times.

4. My final fourth point to this little intro post is that personally I find not verbalising it and discussing it in detail is preferable to talking about it. Yes, you need to let people in on it, to get it out there so everyone close to you knows. But after that, my current view is that the best counselling is to keep your own counsel. Afterall, whilst I have accepted I have it life, I don't actually have it. Not at all. I can't imagine what it would be like.


Ciao for now.


Michael D

 

I am really making progress. I am not masking at work (in a quiet office) and I've learned to just accept the noise. Today, for the first time, I forgot about my T for most of the day because I was so busy and engaged. When I stopped and listened, it was there, of course--so I have to train myself to not stop and listen. I wouldn't realize I wasn't aware of it until I stopped what I was doing and then it was like, 'aha' it's still there. When I did hear it I didn't have any emotional reaction. I've also noticed lately that I go right back to sleep if I wake up at night--even hearing it. I do use a fan at night but it does not block the T. I'm very happy--I feel like I can live with my tinnitus--not just co-exist but actually live with it. I know I'll have setbacks but there have been many firsts this week--four low T days and three loud ones that I can live with, and long periods of not being aware of my T or not caring if I do hear it.

@Dr. Nagler and the veterans of this board are right--there is hope and we can have fairly normal lives. We'll have some bad days but who doesn't? I feel free--free from the restrictions of diet--the constant fear of noise--the constant fear that it will get worse. @Dr. Hubbard also helped with his posts on CBT that reinforced what I learned in my own CBT and anxiety workshop. I think the most helpful parts of CBT were learning to challenge my thinking about T and exposure.

I don't say life is perfect--it's not--but it is so much better now. It is entirely livable and I don't live in fear of what my T will be the next day anymore--especially after a low T day when T would return full blast the next day and I would be disappointed-- now I know that it is what it is and somehow I'm accepting that and living without fear.

 

Kathi, that is fantastic! I'm really glad to hear that. We must stay positive. I've found that when I dwell on my T, and begin to dwell on the negative aspects of T, that's when I feel the worst. But when I say things like, "T does suck, but it can't stop me from living life and enjoying it" I begin to feel better. The more I remind myself of these things, the better progress I tend to make. But there is something very important that I have begun to do, that I wasn't too good about in the past.

In the past, I would only dwell on the positive things in my life when I was feeling depressed. That is fine, but it's when I'm depressed that I feel less motivated to do these things. Instead, I've learned to tell myself these things even when I'm not depressed. Even when I'm happy and having a great day, I remind myself of my blessings in life. My CBT therapist told me it is very important to always do these. This about it: athletes don't just go to the games, they practice.

That's one of the reasons I get a little annoyed when people compare tinnitus to a deadly disease. If we keep telling ourselves that tinnitus is as bad as some super-disease, then we'll never habituate! How in the world can we habituate if we've built our tinnitus up so much that we think nothing can be worse?

I've found the trick to having a good day (at least for me) is to dwell on the positives of life and downplay the tinnitus. I know this is nearly impossible to do when we're in the height of anxiety. But I do believe it's helped me.

 

Been just reading these posts for that last 4 weeks. What a help for me so far this has been. My Story.
I'm 45 years old and have had T in my left ear for 20 years. I was introduced to it after doing some recreational gun range shooting in my twenties, without hearing protection of course. What an idiot. The next day my life changed forever. My left ear had a high pitch ring that would not go away. Scary as hell. I was 24. Constantly touching my ear.. testing, etc. you know the rest. At that time, I will say, that the ringing was real low. I could only hear it when I plugged my ear or was in a quiet room. This is before the internet mind you... so I went to the ENT. Test showed that my left ear had moderate high freq hearing loss and the Dr did the best he could at that time to explain.. IT WOULD NEVER go away. Live with it. And I did. Over the next 20 years I completely habituated to it. Sure, I would notice it like once a week or something for like 2 seconds, laugh at it.. and frankly just ignore it. I would say that during that period of my life, the volume would rate as a 1 or 2 on a 10 scale.

I am a guitar player in a Rock band as well and been playing, rehearsing all my life. Always trying to protect my ears with plugs, headphones, whatever. I would slip up here and there of course. But overall, knew I couldn't afford anymore hearing loss or enhanced T. So 20 years goes by, and my left ringing at a 2 has absolutely ZERO impact on my life other than noticing it for a few seconds once a week. No big deal.
Curveball. 4 weeks ago at the end of our band rehearsal my T was worse. I was wearing protection mind you during practice. But the next morning I was completely fixated on the fact my left ear was ringing way louder than normal and now my right ear was a little bit too!! At about the 3 day mark of this continuation... for the first time in my life complete panic ensued. In the past I educated myself enough to know that for the most part, any ringing in your ears that lasts for that many days is permanent. At least for me anyway. The volume had now turned up to what I would call a 4 or 5. Noticeably much louder than ever. As a person who in the past has mildly suffered with anxiety, panic attacks, etc.. I became obsessed with this new condition. The last 4 weeks of my life have been the worst I can remember. No sleep, waking up to T. Going to sleep listening to my ears ring. LOUD. People around me asking me what is wrong because they can tell I am just out of it. At times, feeling like there is no way I can go on like this. It simply is not comprehensible. If you are in this forum, I probably don't need to go on.

I have spent the last week reading forums like this looking for strength. Reading over and over that is possible that I can learn to habituate to this new level of T. I did it once before. Why not again? Embracing the sound instead of trying to run from it. All the things you read out there. And you know what.... I think it might be working. I'm nowhere near out of the woods mind you. As I type this my ears are ringing like no other. But now in my 5th week of this turmoil, some little epiphanies are happening. 10 seconds passed where I did not dwell on it. 30 Seconds goes by wherein I forgot about my T. I think I may have even had a 5 minute windows yesterday where I felt like somewhat myself again. I packed my two daughters their lunches for school today and forgot about T the entire time. Of course as soon as they walked out the door my ears started to ring. LOL.

Anyway, sorry for the long post (first of my life by the way). I am computer engineer by trade and believe it or not, I never do the blog thing. I hate computers cause I all I do is fix them all day long. My point to all of this is..... 4 weeks ago I wanted to lay down and die. Literally. This morning, I had at least two 5 minute episodes where T had no hold on me. It was there but I gave it no purpose. THAT tells me there are more moments like this to come. I know it. There has to be.

 

Hey Michael, You have summed up so much information and personal experience there! The 4th point is so important - the day I realised that I hadnt talked about my tinnitus for a week was the day I realised I was getting better!

 

Dear DMan, I thought about your posting yesterday. In the past I had some tinnitus in that when I put ear plugs in it was noticeable but not a problem at all. In fact it would lull me to sleep. The first spike was a few years back after a nasty family dispute. I noticed an increase in volume and asked my doctor about it. In about 3 months I had habituated to it. This year it was much much worse after attending a concert. I have gone from a score of 78 to mid twenties on the TRQ since March. The first change was using music therapy - basically finding a slow classical piece of music (say 5 minutes long) and playing it repeatedly via headphones at the same volume of my tinnitus until I didnt hear either. So playing it for about 2 hours at a time. This helped tremendously. Give it a go. It took a couple of months to notice a real change. Cheers, David

 

@DmanLamb Ace post there I just replied in another 'should I go to a concert?', and for every 10 onesided worst case scenario comments there will be 1-2 objective ones. There is a huge gap on the forum that lacks info on stories like yours. The majority living untroubled with t are not ones to usually blog about it on a doom and gloom forum
A lot here is nonhabituaters giving eachother advice on successful management with the use of worst case scenarios at hand and irrational remarks. Looking forward to more posts from you!

Lately at some meetings I've noticed how I become so caught up with the subject of meeting (which is a bigger issue than t lol) and tinnitus becomes lesser important, I may glance at it once in a while. It's both good and bad yet it shows possibility that t can be in the backround

 

well this month has been wonderful i started my Beauty Chanel on Youtube and next week is my first week of acting school and my allergy shots

 

I have slept past two nights without my masking sounds for first time in 9 months. That's a good thing right?

 

At the 6 week mark now. Ups and downs but staying positive the best I can. Two great things happened to me today. One, I actually slept through the night from 11 pm to 6 am. First time since this all started. Til now, its been awake at 3 am to the ringing, anxiety, pacing around out of bed. I don't use any masking devices or pills or anything by the way. I just lay in bed and listen to the ringing and try to imagine that it is normal and a positive thing. Easier said than done, believe me I know. I am no doctor, but I feel like the road to habituation will be more readily achieved by simply subjecting myself to the ringing as much as possible. Not avoiding it. That, and my T is loud enough where honestly, the masking doesn't help that much anyway.
But better than that.... At work today I was conducting a meeting with about 7 customers in the room and I was at the "podium" so to speak. I talked aloud for about 20 minutes and fielded questions when asked, etc. For that 20 minute period I never heard my T even once, not for a second. My brain was so busy choosing words, conveying body language, etc.. that it turned the T off. I imagine that habituation will be something like that. Anyway, this experience was so positive that it also left me with somewhat of a residual effect as I left the office and walked across the parking lot to my car. Like for 2 minutes or so.. then I focused on my T and it turned the volume up of course. "So what" I told myself. You just had a 22 minute reprieve that you never thought would happen... and it did.

 

There is a terrific woman in Holland named Gabrielle who has made a tremedous difference in my life.
She is an angel who I met here on Tinnitus Talk. My suffering has diminished because of her and others in this forum who know what its like to find a greater bond than what hurts us so. Best medicine ever.
I'm from New Jersey and Holland sounds great to me. Listen up and stay strong.

 

So this is what positivity can do to help out or speed up our path to habituation. Glad to hear that you are having a 'Ah Ha' moment when you begin to see the light at the end of that long, dark tunnel. It gives you a glimpse of that possibility that we have been talking about here in the Positivity thread, that when you stay positive and get busy with your life, you can eventually get to the state that the brain can fade T out of consciousness (for however short a moment it may be), and that realization can energize a T sufferer so much that anxiety and panic will give rise to hope. This will in turn help to reduce the stress level to the point that, for some, T will be perceived less loud over time. Congrats.

 

After 6 months of ummm… not so much fun with screaming T, almost losing my mind, I keep cutting back on psych meds that were making me even more crazy and anti anxiety meds (down to nothing on those) feeling like a fog has lifted, worked out in gym, faced my fears and the very noisey T.
I made my commitment to myself to be bigger than my tinnitus and stronger than my fears.
Keeping busy and starting to love life again. T is just as f'n loud but I am not giving it the opportunity to ruin my day. I feel good. I hope the night will inspire some continuation. I remain positive.

 

Hi. A bit of unexpected positivity this week: summer is here in Sydney and I decided to get airconditioning put into my office. For the past couple of years I just put up with the heat with a fan or two. So the aircon is great AND the sound covers the tinnitus to a large degree! When I turn it off I do not notice it (T) to be louder than when I turned the aircon on. Although it "masks" the sound it doesn't detract from habituation. Hadn't counted on that "side-effect"! Another step toward a better life.

 

I just became A DAD!

 

Congrats m8..... it's the best thing in the world...enjoy it!!!!

 

@Sound Wave Congrats.. Puts T in the back seat for a while at least. Had my first boy 5 months ago and sure it´s a wonderful thing

 

100 days of lower T! Yippeee!