Was the Tinnitus Retraining Therapy Effective or Would Habituation Have Occurred Anyway?

Discussion in 'Support' started by LifesABeach, Apr 10, 2015.

tinnitus forum
    1. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      I started wading through the mega-thread on TRT before posting here, but didn't really find what I was looking for. Hope I'm not rehashing an old sub-topic.

      Like many of you have done, I'm sure, I'm considering TRT now that I'm going on 4 months of what looks like a horrendous and permanent T spike - complete with new sounds, increased volume & sound movement - and absolutely no sign of re-habituation. (I've used bedside sound machines and constant daytime background music or TV or whatnot ever since original T onset in 2006, but they don't do diddly for me now. Well, they are better than a silent room, but you know what I mean.)

      From what I've read, you need to plan on giving TRT 18-24 months for it to work its magic on your brain. OK, I can accept that. And I know some studies have shown TRT to be successful for some/many people. But my problem is how - after all of that time - do they know it was the TRT that actually facilitated the habituation for the successful users and not some other factor ... like the simply huge amount of time involved?

      Thanks.
       
    2. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Personally, I don't understand TRT myself...If the volume is really loud how can you retrain your mind to ignore it when it's there? Mine used to be louder than anything, but trobalt has lowered mine so I don't hear it barely. TRT is old-fashioned, I say medicate, medicate...But that's just me. TRT is very costly I've heard. If you do go through with it, I hope it helps...I'm just a pessimist.
       
    3. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      Hey Danny Boy:

      At least the way I understand it, the noise volume used for TRT isn't set so loud as to fully mask your T. If it were, then I'd agree that your brain wouldn't be able to habituate to your T because you wouldn't be able to hear it while using the aids. It's set somewhere just over the level of audibility (I think the term is mixing point).

      As for meds, 10+ years ago, I might have thought so too. But now, with T being much worse than when it started plus severe hearing loss plus a diagnosis of New Daily Persistent Headache plus a few other things thrown in for good measure, I'm pretty scared of most Rxs thought to be useful for T (for some people, at least) b/c of side effects and lack of generally accepted efficacy re: T treatment.
       
    4. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Hm, well trobalt can't really make your t worse, it can improve it...Hard to get the stuff, unless you live in Spain. +trobalt can help with headaches.
       
    5. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      No, no Trobalt for me here in the States.
       
    6. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      It's under retigabine in the usa.
       
    7. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      Wait, isn't that the one that can cause blue skin and retinal problems!? Sheesh, just what need next. :)
       
    8. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Only in some cases, that's only been reported on high doses over a few years.
       
    9. Stink

      Stink Member

      Location:
      US
      Tinnitus Since:
      09/2000
      TRT takes 24 months during that time 99.57 percent of sufferers have habituated anyway.
       
    10. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      That issue is the reason I started the thread, for sure. When folks say TRT works, how do they know it's the TRT itself that's instrumental to habituation and not just all of the time that's gone by that's done the trick?

      If any TRT fans are out there who know the answer to that, I'd love to know before I plunk $$$$ down on TRT.
       
    11. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      One bump just to see if anyone out there knows the answer to the question in the OP. Thanks.
       
    12. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      OK. I'll try to respond.

      More like 8-14 months, but for sure it is far from overnight - so your point is well-taken.

      To the best of my knowledge, you can't. Now if you waited, say, six years and then started TRT, you could be pretty sure that TRT played a significant role in facilitating any habituation that might occur over the ensuing 8-14 months. But if you started TRT the same day you developed intrusive tinnitus - or even a few months later - I do not see how you could possibly know for sure the extent to which TRT facilitated your habituation over the ensuing 8-14 months, if it had any effect at all!

      You are very welcome. Hope it helps.

      stephen nagler
       
    13. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Let me add one thing to the above response.

      As I have written elsewhere, one of the real shortcomings of TRT (in my opinion, anyway) lies in the lack of credentialing and the lack of standardization. If I were in charge of credentialing and standardization, which is a headache I absolutely do not want, I would require every TRT clinician to explain to each prospective patient exactly what can be expected from TRT and what cannot be expected from TRT in terms similar to what I have written above. That is how I do it in my own clinic before any patient is even given an appointment, and it is how I would hope other clinicians conduct their practices.

      stephen nagler
       
    14. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      OK, that makes a lot of sense. Thanks again. Dr. N.
       
    15. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      That's really an unfortunate set of circumstances.

      Do you have an opinion one way or the other re: the folks who do TRT at the UCSF tinnitus patient management program?
       
    16. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      No, but I have provided a series of questions that I believe should be asked of any clinician offering any treatment for tinnitus sufferers, TRT or otherwise. Those questions may be found towards the end of my post at:
      https://www.tinnitustalk.com/threads/trt.7823/

      Hope it helps.

      stephen nagler
       
    17. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      Great! Thanks.
       
    18. geg1992
      English

      geg1992 Member

      Location:
      England
      Tinnitus Since:
      05/12/2014
      Cause of Tinnitus:
      Noise exposure + Antibiotics
      Hope you improve soon, what caused your spike?
       
    19. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Not a problem. Glad to help.

      Now, LAB, let me ask you a question. If you do not feel like answering, that's perfectly OK. But since you are apparently seriously considering TRT, the answer might help you quite a bit with your decision process.

      Here's the question ...

      On a scale of 1 to 10, where 1 is "I have tinnitus, but I really don't care since my tinnitus does not bother me in the least," and 10 is "I have tinnitus, and my tinnitus has totally and irrevocably destroyed my life," where would you put yourself overall? Take into account good days, bad days, etc. Just give me a single number where you see yourself on that huge scale.

      stephen nagler
       
    20. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      I'm doing great, Greg. Thanks for asking.

      I have absolutely no idea.

      stephen nagler
       
    21. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      Hi Dr. N.

      I can't give you a single number right now b/c along with the spike and change in my tinnitus I've been suffering from persistent daily headaches for the past 3.5 months or so. It's difficult to tweeze the two of them apart to give a "life impact" grade to each one separately. If it helps, I can say that together they generate a 9. (The headaches range from 3-8 on the pain scale and I'd love to be rid of them, but having had tinnitus since 2006 I know the emotional impact attached to tinnitus bugs me more than physical pain.)
       
    22. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      Thanks. Wish I knew!
       
    23. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      Well, LAB, TRT isn't going to do a thing for your headaches, unless those headaches are caused by your tinnitus - and for the purposes of this little test of mine that is an assumption you cannot make. What I am saying is that if you cannot readily assign an 8, 9, or 10 specifically to your tinnitus, then I'd think long and hard about whether TRT is for you. In my own practice, for instance, almost all of my TRT patients are 9s and 10s, more than half of whom are unable to work because of their tinnitus and many of whom have seriously contemplated suicide. Additionally, I have a couple of 8s, one 7 (a physician), and one 6 (also a physician). Perhaps other TRT clinicians see things differently, but in my opinion many 8s and almost all 7s or below shouldn't really be considering TRT at all.

      So (true story) a fellow called me last week wanting to make an appointment for TRT. He had heard all about TRT and found me on the Internet. He told me that he was totally fed up with his tinnitus and took five or ten minutes giving me a detailed history about his condition. He wanted to book a flight to Atlanta and start TRT as soon as possible. I gave him the same little test I just gave you, and he said that on that scale he was a 4. In other words, having tinnitus bugged the crap out of him - but it didn't really affect his life all that much. I explained to him that TRT would not do a thing about his having tinnitus; it would only address how his tinnitus affected him. If he was an 8, 9, 0r 10, TRT could probably get him down to a 2 or 3 - but he was pretty much there already! So I spent 15 minutes or so explaining the pathophysiology of tinnitus to him, I explained the importance of trying to avoid silence, I told him what to avoid in terms of LOUD noise, I discussed some coping strategies with him, and I pointed him to some resources for self-CBT. You know, the sorts of things you can generally find right here on this board ... or in the near future possibly on The Hub that @Markku, @Steve H, and some other dedicated folks are working on developing. That's it. The very last thing this gentleman needed was TRT - in Atlanta or anywhere else!

      So, LAB, before you call the folks who do TRT at UCSF and ask them that series of questions I referred to in Post #16 above, take some time to ask yourself whether in your own situation TRT is worth looking into at all!

      stephen nagler
       
    24. LifesABeach
      Depressed

      LifesABeach Member

      Tinnitus Since:
      02/2006
      Cause of Tinnitus:
      Wish I knew
      Thanks for taking the time to respond in detail, Dr. N.

      I understand that TRT isn't going to do anything for my daily headaches. That would be great, but of course that's not going to happen. My original plan had been to try solving for the headaches before thinking about undergoing any costly tinnitus treatment.

      Unlike tinnitus, I had assumed, I'd be able to work with my primary doc and a neurologist and get some measure of relief on the headaches in terms of frequency and intensity even if I couldn't get rid of them completely. Plus, that would have given me time on my own to try to habituate to the tinnitus. I figured if by the time I had some success with the headaches the tinnitus was still driving me nuts in a life-affecting way, then TRT would be a potentially reasonable approach. And, of course, if I'd significantly habituated by that time then woo hoo for me. (I even fancied that perhaps a reduction in the headaches would result in an easier time for me with the tinnitus ... I doubted the volume would decrease just b/c the headaches were gone or reduced, but at least I'd have a firmer base of health from which to deal with the tinnitus.)

      Unfortunately, I've come to learn that the drugs my neurologist wants to me to take for the chronic daily headaches are meds that might well aggravate the tinnitus and/or further impair my already severe hearing loss. So, I'm at a standstill with the headaches, and am now thinking about TRT.

      Hope that makes sense.

      Good true story. Thanks for taking the time to record it here. I hope folks take heed.

      As for me, I know my tinnitus isn't a 4, like this gentleman's. I've had tinnitus since 2/2006 and had plenty of "2," "3," and "4" days after a hard-fought habituation and so I know those days well. (Good ole days, from my perspective now.) I was just trying to be totally upfront with you in answering your question by disclosing the headaches and admitting that they make it hard for me to be sure I'm a tinnitus 9 or 10 right now, let's say.

      As an aside, I'll note that it's funny how this (permanent and multi-faceted) spike has me thinking back to my original onset in 2006. I would have called myself a 10 then, no question. Even though at that time I had far fewer sounds in my head, all at a far lower volume. Also, there was no movement of the sounds then. Now, they waver around inside my head (the light saber effect, as it were). And the right ear has a constant, very high pitched pinging thing happening along with the sound of some guy with a chainsaw and a never ending supply of wood maybe 3 houses down the block ... brutal. In addition, one day the left side is worse and like as not the right side is worse the next day. To add insult to injury, it seems far more reactive to noise now than ever. Back in 2006, I loved driving b/c it would help mask the tinnitus. Now, when I get behind the wheel it feels like my dentist is using two cavitrons in the left side of my head; and it stays that way for a while after the trip. Crazy.

      All of which is to say that over the years many of the things a tinnitus newbie might learn from a tinnitus coach - were such a person to exist - about how to think about tinnitus (what it is and isn't; that it's not - after a quick MRI - a symptom of something physically cataclysmic on the horizon and that life can go on b/c you can get used to it, etc, etc) have become ingrained in me. And, yet, I still find myself hanging on by my fingernails some days because of how it hits me so hard on an emotional level (objectivity and knowledge be damned.) Maybe all that does mean I'm an 8, 9 or 10.

      Dr. N., if this prompts any further pearls of wisdom, I'm all ears. If not, thanks for your time.[/QUOTE][/QUOTE]
       
    25. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      You are welcome. I hope it helped.

      The only other "pearl" I have to offer is something that is so incredibly obvious that folks often forget it in this day and age. Remember when you were a little kid and your parents told you "Believe nothing of what you hear and only half of what you see" (or some similar aphorism)? Well, what you read on the Internet (and especially on Internet boards) absolutely falls into the "what you hear" category. In your search for information, just because something you read makes sense does not in any way mean that it is accurate. And that is true regardless of who is writing it, including me! So it is really important to go out of your way to do your due diligence.

      stephen nagler
       

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