Does it really get better?

Discussion in 'Support' started by Neenie, Dec 4, 2013.

tinnitus forum
    1. Neenie
      Depressed

      Neenie Member

      Tinnitus Since:
      09/2013
      Does it really get better? Mine hasn't changed at all in almost 4 months. I've been to all the doctors, done all the right things (except thinking about it 100% of the day....). I am so hopeful when I wake up in the morning, and so earth-shatteringly devastated when I realise it's just the same as the previous day. I'm so so sad. Why are things not getting any better? I can not live with this. "Just accept it" is what I here from everyone. I can't. I won't. Life with tinnitus (well my level of tinnitus) is unbearable. People have told me before to accept that certain things, like the fact that I was not good at Physics in school. I couldn't accept that so I ended up studying and now have a degree in Physics. I can't accept things I don't want to accept. And I do not want to accept tinnitus. It won't get better. It hasn't yet so why would things change?
       
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    2. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I'm not a professional, but to me it sounds like you might be an excellent candidate for cognitive behavioral therapy.

      Your unwillingness to accept tinnitus is horribly destructive, and CBT could give you tools and ways to address that.

      What do others here think?

      Usually people have begun to feel better at the 4 month mark, but not always. It can take over a year, or more. So don't draw any conclusions yet, your tinnitus is still in the sub-acute stage.

      I hope you'll start to feel better,
      Markku
       
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    3. Sean

      Sean Member

      Tinnitus Since:
      01-01-2011
      Neenie - I was in your shoes two years ago and I exactly know how you feel.
      It DOES get better ..I don't know when but just think about it ..almost every one here was in your shoes and they got better .It will get better !
      You gotta have that faith plus you are so young ..in 10-15 years we should have treatment ..100s of research going on around the world .i am in Healthcare and I have seen some crazy things cured .. I don't see why T won't be cured.
       
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    4. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      I could not agree more with Markku. I am doing a whole lot of stuff to work on my tinnitus (supplements, mediation, Neuromonics, barotrauma specialists, acupuncture, medication.) But cognitive behavioral therapy has helped me more than anything. It's a tool that will help you build a more peaceful life, not just for tinnitus.

      I also wish I was better habituated at six months --but I DEFINITELY am much better than I was before.
      I think the CBT/Buddhist/mindfulness concept of acceptance is misunderstood by some here. It's not about being passive, just rolling over and sighing, "Oh, I can't do anything about my tinnitus." It's not "just learn to live with it." It's about accepting the fact that it is in your life, making peace with that, then moving on. You will find it is much easier to find ways to help yourself -- and there are ways to "treat" your tinnitus and make it better, no matter what the doctors tell you -- once you move that big boulder called objection out of the way. It's keeping you trapped where you are, miserable and panicky. You found a way to get better at physics: you accepted that you weren't good at it then found a way to make it better (studying). You can do the same for tinnitus. CBT basically teaches you to refocus the way you think about approach problems, stresses, so you can move forward to solutions.

      You will need to accept that you will have good days and difficult days, especially in the beginning -- something that is part of life. You also will learn to let go of the misconception that you can control everything in your life. You can't. Learn to accept what you can't control ("I have tinnitus") and embrace what you can control ("I can see what supplements might help me, protect my ears in loud situations, try meditation," etc.)

      Also, I have heard people suggest here that "acceptance" somehow makes you less proactive. Not true. BE an advocate for more research, better treatments. Seek out the best help you can find, demand quality time from your doctors and dump the ones who don't give it to you. Acceptance doesn't keep you from doing any of that. If anything, it helps you help others as well as yourself.

      Oh, and I suggest you find a good professional to help you with your anxiety. As I recall, you are taking a bunch of meds, yes? That doctor is not helping you and I don't think the medication is, either. Find a good psychiatrist, a good CBT therapist, and go from there. Yes, you may need medication in the beginning. I did. But your current doctor seems to be nothing but throwing pills at the problem.

      I do feel for you. I was exactly where you were five months ago... so miserable, I really didn't see how I could make it from day to day -- in fact, in some cases, from hour to hour. I had rolling panic attacks and could not sleep. CBT gave me the foundation to rebuild my life with tinnitus. Hey, I still have days where I think: God, my tinnitus sucks and it really is annoying me. But I have my life back -- and it is a good life, filled with promise and happiness.

      Blessings. Sorry for the long post.
      D
       
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    5. carol kane
      Wishful

      carol kane Member

      Location:
      Lincolnshire united kingdom
      Tinnitus Since:
      11/13
      Thanks for that Lady Di, i so needed to read that even though it was for someone else, i feel full of hope and optimism, especially as i´ve had a low t day today, bless you for that!!!
       
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    6. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hugs for you, Carol. Some days are better than others but we all have so many reasons to have hope. I also have been comforted or recharged by what people have written here, so I am so pleased what I said helped you. Isn't TT great??
       
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    7. carol kane
      Wishful

      carol kane Member

      Location:
      Lincolnshire united kingdom
      Tinnitus Since:
      11/13
      It really is great, i´m so grateful for the advice and kind words that people have given me. Feeling blessed!!!
       
    8. Luca
      Amused

      Luca Member

      Location:
      Vienna, Austria
      Tinnitus Since:
      3/2010
      Cause of Tinnitus:
      Neck injury
      By "better" I would refer to your state. Most will eventually live a normal life after habituation. The noise itself however doesn't get "better".
       
    9. Sherri786
      Dreaming

      Sherri786 Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      03/2013
      Hi Luca, the noise does get low, at least for me it has.
       
    10. Dan Turner
      Transparent

      Dan Turner Member

      Location:
      Conyers, Georgia
      Tinnitus Since:
      1999
      Hi Neenie...I'm 13 years in now (I think).
      My noise (a dentist drill) has not gotten better...it has changed a bit over time and there are occasionally less noisy days than others. I think my answer to you will be that "the noise may not get better...you on the other hand will get better."

      It may seem unacceptable...but in the long run you do accept the situation. How soon?

      This is one for you to sit down and mull over. If you need cognitive therapy to help you over a hurdle or to share person to person in a live room...give it a try. I don't think any of us are here to re-invent the boat....we're waiting for that miracle pill....however, you should really optimize the successful methods of others in order to adjust life's little sine wave.

      13 years ago, there wasn't a great deal of anything going on that I saw to resolve the problem. There are...however...plenty of folks that mean well and too many folks that do not mean well with answers, methods, pills, elixirs, pressure chambers, etc. for a small cash payment will give you a "cure'....these folks I hold in the same classification of some unscrupulous funeral director that palms a $10,000 casket off on a person in grief and desperation....and a special place in the septic tank of Hell. But....I digress.<G

      Sleep is a big thing. Get some! If you're having trouble with that...your MD can help you out with a variety of sleep aids. I used Nortriptyline for 8 years until I ran out and just didn't renew the prescription. This med may have a better replacement by now...basically an anti-depressant, but when taken at night a very complete sleep and fresh start in the AM.

      Noise abatement. My tinnitus noise will zero-beat out when I go to a semi-swift river in the N. Georgia mountains to climb up on a rock nearby the water and just let it do what it do.<G Within a few minutes, I'm usually out like a light and after a power hour of dozing off, I'm a different Dan than when I showed up.
      I also noticed...for me as well, the ocean doesn't work the same as the river. If I had known, I could have saved about 1300 miles last Spring.<G

      If you swim....try this....jump in a quiet pool (hopefully quiet) and see if your noise goes away while you're underwater and bit of pressure. The first time that I found this out, I almost needed resuscitation as I kept holding onto the bottom run of the pool ladder and experimenting until I almost blacked out.<G

      Again...13 years out...I'm okay. It's just a wrinkle that you, I nor anyone else here wanted or expected. So when those desperate times come about...been there, hated it...utilize the methods and success of others to get past their desperate times. The noise may never get better; but not unlike folks that lose their sight, hearing, speech or impairment to limbs and mobility....adapting is Job One.

      There are plenty of Tinnitus Tough Guys/Gals/Things out there that are all over the place to lend you moral support and little tips, hints and analogies. It's probably one of the reasons you signed up here.
       
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    11. mick

      mick Member Benefactor

      Location:
      USA
      Tinnitus Since:
      11/2012
      CBT may not be helpful to everyone. For me it was more helpful to just occupy myself with anything that I enjoyed. When I tried CBT all the talk about acceptance, focusing on how it was not harmful, "trying" to be aware that I did not have to get anxious, and whatever other tools they tried to teach me only made me focus more on my T. Maybe I was just doing it wrong. Things got better for me when I began saying the heck with it - get on with life. Over time my tolerance for the noise increased and my sensitivity decreased. The noise is still there, but I can easily ignore it when occupied.

      The psychologist told me ahead of time that certain people do not respond well to CBT. I guess I'm one of them.

      I don't want to discourage anyone from trying CBT. You really won't know if it helps until you try. I do want to point out that if you don't respond to it you can still get better. It's not your fault if you don't respond, and its not the only thing out there.
       
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    12. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Hey Mick: I agree. CBT indeed is not for everyone, just as Neuromonics is not, TRT is not, or most other treatments for tinnitus. In fact, I personally tried hypnotherapy, which has been successful for quite a few T patients. Zip, zero, nada for me. I did a couple of sessions and moved on.

      My doctors (or at least the ones I trust) have told me that with tinnitus, treatments must be tailored to the individual, much more so than with most disorders. That's one reason the medical community would rather not deal with tinnitus patients, one of my doctors told me recently. It takes time to sort out what will work for each one. Most docs would rather just hand out a pill, or do a procedure, and then have the patients go away.

      The reason I keep mentioning CBT is I think a lot of tinnitus sufferers aren't even aware its an option. It;s also a treatment that does not require drugs, does not have dangerous side effects. And there is clinical research that shows it works.... for many people. But certainly not for all.

      FYI: I also don't think people should get down on themselves if they aren't habituating "fast enough," when they see other people on the board, who has had T for less time than they have, saying they are doing great. We each must go at our own speed, in our own way.
       
    13. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      That's an interesting point, Luca. Actually, my noise is better when my state of mind is better. After all, my brain is making the noise. It really is a matter of perception, at least for me. But we all are different, as I said above.
       
    14. Danny
      Fine

      Danny Member Benefactor

      Location:
      Near Toronto Canada
      Tinnitus Since:
      2012
      yes
       
    15. Neenie
      Depressed

      Neenie Member

      Tinnitus Since:
      09/2013
      I've tried CBT many times in the past. Even did an intensive 9-5 two week course. Twice. Still nothing. Logically I know how to think but that doesn't mean I do think that way. I feel like CBT just makes you feel better about a situation that is in fact terrible. My partner always looks on the "bright" side of everything. I just think he's foolish and not realistic. Having said that, he is in fact far less anxious than I am. I can try to tell myself that everything is going to be ok, but isn't that a lie? I've had zero improvement in 4 months so why would I suddenly try telling myself that things will get better. If they haven't now, they probably won't. Sorry for being so negative, I'm just really scared and sad that this is going to be my life :(
       
    16. Dan Turner
      Transparent

      Dan Turner Member

      Location:
      Conyers, Georgia
      Tinnitus Since:
      1999
      I think everyone that has taken on Tinnitus has had a pretty rough first year....not to mention the first few months.

      The suggestions to try the CBT or to sit in with a support live room group in your area or take your concerns and feelings to a psychologist are good suggestions by other members that have been at your stage of recognizing a situation that is not going away.

      I wish there was that miracle cure available that you're looking for. Keep in mind, if that magic pill was available....there would be one very long line queued up to get their dose. When I was at your stage of realization there was not a very big effort underway to find some sort of cure. Times are different and there are a variety of groups that are putting their time and money into finding what you're looking for....what we're all looking for.

      In the interim, it's time to ask for some help from your ENT, MD or his/her directive and referral to help you find some release from being scared and negative. Having said that, the 1st year was always the worst because there just wasn't a lot of things available to consider much less talk about when my "noise" came apparent.

      There were scams and not very well tested procedures that did more damage than good. I know one local MD that had a procedure that sounded plausible....an inner cochlear wash with a very lightweight solution that the "inventor" allowed should wash out any damaged sensors that were broken and triggering the noise. This was a surgical procedure and the end result was a compounded noise along with vertigo that put this doctor on disability.

      The moral to the tale of woe....there are Medical types with good intentions, but using you or other tinnitus sufferers in desperation to test unproved techniques. I had one ENT that was willing to section my aural nerve with surgery if the noise got too much. No guarantees with the exception that I'd be deaf in my right ear forever given the irreversible results. Months later, I read that the procedure was being frowned upon as people did wind up deaf but their tinnitus noise was still there as the source was not along the nerve.

      While you're in the search mode....everyone has been in the search mode....just be careful about the cures or procedures that pop up. In my experience (and opinion) many of these cures, procedures, tests, etc. are presented to take advantage of unfortunate folks that are just at the stage that you are.

      I truly feel sad for you at this time because I know you have to be worried, desperate, at the point of despair and frustrated that no one else can "hear" your noise much less understand where you're coming from. I think everyone here has the same compassion and whatever advice that they're offering for cognitive therapy, habituation training, counseling and/or psychological treatment along with MD and ENT opinions have sent these items to you because they know from their own personal trial and tribulations of Tinnitus.

      Everyone wants to help, but the best thing to be found here will be advice based on past experience. Give these good people the benefit of the doubt....again, they've all been where you are.
       
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