Hello TT (Tinnitus for 10 years)

Hello TT, Ive been lurking the tinnitus forums off and on for ten years.
Im feeling down, I have had tinnitus since I was 13 or 14, cant remember. Im now 24 years old trying to get by.

My tinnitus was pretty modest, It could go by days without me thinking to much about it. I lived my life as I wanted, making music, playing loud music and did not pay any attention to the tinnitus. But the warning signs were there, It was becoming louder every year.

But then a half-year ago, there it was. My new enemy. My tinnitus had gone from somewhat mild to I guess severe. Now the tinnitus can be described as:
1. High pitched (cant be masked, except when in the shower and in the car with the windows down).
2. Buzzing sound, feels like my ears are moving/vibrating.
3. Crackling in the ears when I swallow, move my head.
4. I can hear my pulse in my ears, especially when I have had an excersice of some sort.
5. I feel like there is pressure over my ears constantly, Im doing the Valsava Manuever pretty much every hour or so, without any succes to relief.

And it feels like it is progressively getting even worse, my hyperacusis is also being put into the spotlight with myself cringing if someone is laughing loud or a child is screaming.

My life has taking the turn for the worse, Im feeling like the life I had infront of me is shattered in pieces. Im scared.
Im scared it will get worse, as its been getting since the onset ten years ago. Im scared that my lifepartner is not getting her portion of life.
Im not the man I used to be. I would describe me 1 year ago as a person who was fun, who was caring and looking forward to be with my partner. Now that is all gone. Im not coming home anymore screaming "Im home, honey".
I come home, Im tired, dont feel like talking, trying to talk and listen but im not there, cant help it. I have nothing to "chit-chat" about.
I love her so much... I want to give her the world, I cant. Im devastated that Im ruining her life/future.

Im exhausted, I just needed to write something to someone.

 

Bob,

I really feel for you. I don't have anything smart to say, You've had tinnitus for 10 years, mine started 3 weeks ago, who am I to give you advice. But I've already learned how devastating this illness is. I feel the same like you, all plans, ambitions shattered and future uncertain.

You should be honest with your partner. Talk to her. You are aware things might not be going well at the moment but explain to her what are you going through. Tell you need her support, she will understand.

There are moments when I can't stand it anymore, I'm scared. But we need to stay strong, what else is there. Hopefuly there will be a cure one day, maybe not for tinnitus, but stem cell treatment for hearing problems, that will indirectly help us. I estimate it's 10-15 years away from now, I cling to it. Best of luck to you

Fish

 

Hi Bob, I am pretty much in same boat as fish, three weeks into T. I do think fish gave you some very good advice.
BTW what is Valsava Manuever, I am sure your ordeal you are going through can help others here that read your post

All I can add brother, is be strong mentally. That's where the battle is being fought. We have to be stronger than the T.

Gary

 

Thanks for the replies, I was a mess yesterday! Reading your replies is helping.

Fish you said "Tell you need her support, she will understand.". Well she knows, she is supportive. She tries to help. She gives and gives. It feels like Im only taking, a parasite of some sort.

Gary, The valsalva manuever is
"The Valsalva maneuver or Valsalva manoeuvre is performed by moderately forceful attempted exhalation against a closed airway, usually done by closing one's mouth, pinching one's nose shut while pressing out as if blowing up a balloon."

Karen, I havent tried any soundtherapy except I have fans, radios and computer/tv running all day long when Im home.
As for the supplements I have tried absolutly none, I would like to know what they are doing and why. Why is magnesium helping? What does it do to the body? It would be good with a list of supplements that several people have been taking and seeing positive outcomes. As for now I see 100 different supplements on the internet, hard to chose.

What I have tried to do is Cognitive behavioral therapy (CBT). and Acupuncture, it hasnt helped me.

I have donated a small amount of money to research, I hope, I really do that some day there would be a cure. Its that and the fact that I have one of the best girls around that keeping me alive.

Thanks again for the support. I will try to post a "happier" post soon, this post is not so encouraging for people who are new to tinnitus. Im sorry for that.

 

Good idea Bob, I too would like to see a list of supplements that have helped some people.....

 

Thank you so much Karen, it is a good place to start. Also good reading there. Well today is the first time in three weeks My T is only at a 2-3 in stead of a 10+ so far. Will see what happens tonight. it's 4:25 pm here, been up since 10am. Usually by now it's at 8-10+ I did nothing different yesterday or today except my last steroid pill was Wednesday, the whole time (6 days) I was on seemed to make it way worse. Well just have wait and see.

"I am really enjoying this non-T day" It's giving my brain a well deserved rest. lol

 

Hey Bob,

You're me. You describe me in March and April. Every single sentence is me. The signs, the music, the partner experience, the man you used to be (read any emails recently that you wrote when you were well and wonder if that guy knew how good he had it?), the Valsava Maneuver, the heightened sensation after exercise. All of it.

The one thing I've got for you right now that you need to hang onto is this:

It will get better. This isn't the end. It's a blip. You *will* be that man again.

My problem was a unshakable conviction that I'd damaged my hearing, plus work-related stress. Guilt, self-hate ("I'm an idiot!!"), stress, anxiety. All focused like a laser onto my ears. Every single second of the day and night, all of my attention was on the sound and *sensation* in my ears.

Here are all the things I did. None of them on their own were a magic bullet, but I believe they all worked together:

- made sure I ate, even when I couldn't face it. You need to stay physically healthy, you need your vitamins.

- saw my GP to address the anxiety. I went back onto Fluoxetine (Prozac). I still had 6-8 weeks to get through before that would help, and I knew it. More on my GP in a moment..

- talked to my wife. Whereas I was convinced I was done (in the darkest sense), she was equally convinced that I would get through it. I have to admit that I found this hard to believe at the time, but I was able to hang onto it. It's like I delegated the hope part to her and had faith in her judgement (mine was shot to pieces).

- learned from my GP that there are a lot of nerves going to the ears and the ear area. Consequently, when you decide or are forced to pay attention to that area, you really sensitize yourself.

- learned that there is a vicious cycle between anxiety and tinnitus. While ill, your conviction is that tinnitus is causing the anxiety. If you're able to view it differently, that the anxiety causes the tinnitus, then suddenly you had turned this whole thing into something you can fight; work on reducing anxiety.

Your brain is very good at concentrating on things that worry you. Your ears are worrying you, and so you focus on them. Everybody can hear tinnitus (there is a study from the 50s that shows this); everybody else isn't *worried* about it.

Did you know you can always see your nose (that will screw you up for about 10 minutes until you forget about it again)? Concentrate on the sensation between your big toe and the next. You never think about it, and that's because you don't need to.

So, my basic daily regime was to stop myself thinking about it. I had to start with things that would stop me thinking about it for a few seconds/minutes at a time: I learnt spanish numbers and counted aloud forwards and backwards (a nutty day), and played guitar. *Nothing* else at that time would distract me. I would get absorbed few a seconds/minutes, and then realize I'd not been hearing my T. Of course, then it comes back, but I was able to generate some real hope and belief like this that I could become habituated. Little by little.

I went back to work. I'm a software developer. I found a small project I could work on. I normally listen to music while working, but even this wasn't masking my noise. I used natural soundscapes (Jim's are perfect for this), and then tried to focus on what seemed like a pointless project (in the scope of everything else that needed to be done). Each day was a struggle, but I would be distracted for tens of minutes.

I got my hearing checked. I found out there was no damage. My hearing was *better* than it should be for a middle-aged "musician". This made me think I'm just very sensitive about my ears. This was huge. That night I slept for the first time in 6 weeks without amitryptiline. The next day was amazing, I felt I'd got my life back. However, I was still suffering with underlying stress and anxiety, and I would have bad days every so often.

I found a PDF about personality types and how they relate to T. More evidence that my mind was the key to getting better.

I found this forum. I found evidence of serious research and serious money being spent on what I had until then was a problem only suffered by stupid musicians, who were undeserving of funding.

I found other forums, where I read accounts of people who had gotten better. Importantly, they didn't say their T had gone, they said they didn't care about it. That was enough for me. I had an inkling that I've had T for a long time, and not cared about it (also, the idea that we've all got T and don't care about it). What I needed to do was get back to not caring. More evidence for mind as the focus of treatment.

I went back to my band. With earplugs and a sound meter (I must have looked a little unhinged that night). I knew instinctively that if I started behaving like the old me, I might fool myself into being the old me, and that I wouldn't set up any cause for feeling a victim. I was very scared that night, and didn't honestly enjoy it. The next time was better, and by the time our next gig came around, I was back to old me.

I used masking to take the edge off, but not at night. This was a weaning process; I had started with amitryptiline at night with white noise playing on my iPod. Then I would try and take my earplugs out before morning. If I woke up with them in, taking them out prompted cold sweats and panic attacks as the T rushed back in.

I stopped the Valsava thing. I came to realize that my sensation that made me do that was the result of my mind focusing so much attention on my ears. In fact, as soon as I thought about my ears, I could feel that sensation start as if they were closing up, which prompts the attempt to open them with Valsava. I told myself that if work on distraction, that sensation will go away. That sensation alone is what I believe caused my crisis; it makes you feel deaf, and it heightens your perception of the T. This stresses you out and you focus on it more. It also revved up my T into a high pitched squeal. It was hard to get out of this loop. I found it would come on whenever I got into my car. I couldn't understand this at all. I wondered if I could break the link, and did the counting aloud thing while driving.

I hope some of this helps you. It's like a brain dump of my experience - I've splurged parts of it in other posts too. Regulars may be fed up with reading it

Keep talking to us, you'll get better and then you can tell us about it.

DD

 

Thank you, Dezdog.

you said "I found a PDF about personality types and how they relate to T. More evidence that my mind was the key to getting better."

Would you like to elaborate that? Sounds intressting.

And it was a really good read. You gave me some light on my mind. Funny thing that we can see our nose. Somehow that helps. Thanks for the reply Dezdog!

 

DD, excellent reply. Really does make sense.

 

Thanks guys. Here is the PDF that I mentioned.
http://oxfordlearning.org.uk/westbe...ationswb/pdf/A/L_Waite_GP talk powerpoint.pdf

 

hi can you tell me what suplaments worked for t thanks jack usa

 

Hey Bob,

Man I can relate,
Like you I got my T around 13 or 14 years old.
Like you I have had it a long time (24 years).
Like you I feel I am not the man I used to be.
Like you I feel my wife is missing out on the life and attention she deserves.
Like you I am scared for the future.
Like you when I get home I'm not in the mood to talk, my ears feel blocked and talking sounds horrible.
Like you I have hyperacusis and now driving in a car on the open road is too loud.

Your not alone mate, remember that when you think no-one understands what your going through, I understand, many others in this website also understand. Somtime soon somethings going to come along that will give us all our life's back.

 

Thanks Jamie, yeah sometimes the only thing that gets me by is the small hope for cure.

 

Hi DezDog, I know your post is from last August but I just joined the site. I found it extremely helpful as well as the.pdf file you gave the link for. The things you mentioned sound challenging because your dealing with yourself, your thoughts, emotions, anxiety and habits...which isn't always easy to control or get around but I know it can be done. I started out with pulsatile tinnitus in my left ear after a sinus infection back in '08 it freaked me out at first I did what everyone else does Dr's, tests etc... but got to the point where I rarely noticed it (or cared). Now my tinnitus seemed to changed, both ears, louder, stuffy feeling and some pain as well as hyperacusis which I had before this new onset. Anyway your words and the .pdf are very profound and have forced me to think in the other direction...anxiety causing tinnitus. Thanks for the post.

 

Thanks Mike. Hang in there. And you should get some kind of award for reading all of that. If I've helped you in any way, I'll be very happy.
Cheers
DD