Only Doctor in My Country Who's Supposed to Be a TRT Expert Doesn't Actually Do Proper TRT. Help.

Discussion in 'Support' started by Zenyatta, Jul 11, 2017.

    1. Zenyatta
      Depressed

      Zenyatta Member

      Tinnitus Since:
      2012/2017(spike)
      Cause of Tinnitus:
      Unknown/Ear-tooth infection
      So I've decided on doing TRT and contacted the only person who really knows about it in my country. Read up on it as much as I could, and by now it has become clear that the place I found does not adhere to the standard TRT model.

      1: No tinnitus counselling. The doctor insists on having therapy, which I agree with, but I was redirected to psychologists/psychiatrists who do not do tinnitus counselling specifically. Sure, I could use some talk therapy, but that is not what my main problem is right now - it's the fact that I have hyperacusis and tinnitus that reacts to "safe" levels of sound despite protecting my ears by spiking up (often permanently gaining new noises along the way). It is the sole reason I am currently suicidal and considering ending my life before the year ends. I had plans for this summer and now all of them are out the window and I'm struggling to stay alive and not lose my job. I had to move back in with my parents and they drive me around, which is... disheartening. (I cannot drive and at this point will probably never learn due to a degenerative eye condition.)

      2: The white noise generator I got (in-ear style) completely blocks my hearing with the sound on even on the lowest setting, making me basically unable to participate in a conversation because it sounds muffled. This means that I cannot wear them at work - I was advised to wear them at home or even when I sleep (?!) But I can't even watch TV or YouTube at a low volume when they're in?

      3: My tinnitus has not been categorised according to the standard 0-4 rating.

      4: The WNGs I got obviously do not satisfy these TRT requirements:

      The end result of the instructions is that (1) the sound does not suppress the tinnitus in any way, (2) the sound is not annoying, (3) the sound does not interfere with communication, (4) the sound does not elicit the stochastic resonance phenomenon (which can actually aggravate tinnitus), and (5) within the aforementioned constraints the sound maximally facilitates habituation. The specific details of how sound therapy is employed in each TRT category and how devices are set (for the categories requiring devices) for each is well-described in a number of publications and is beyond the scope of this review. Suffice it to say that when wearable devices are used in TRT (a) they are inconspicuous, (b) they are comfortable, (c) the sound they emit is not annoying, (d) the sound they emit does not interfere with communication, and (e) within a few minutes the wearer becomes oblivious to them. The devices are worn as much as possible but for at least eight hours a day – but since the wearer quickly becomes oblivious to the devices and to the sound they emit, that is largely irrelevant. At the conclusion of TRT the devices are no longer needed.

      5: I was told that if I hand the in-ear WNGs back, I cannot work with this clinician anymore as they feel like I'm not co-operating and that they have done everything they could for me. I believe this is quite unfair - it isn't my fault that I fail basic spoken word hearing tests with the devices in.



      At this point, I'm very confused and scared of making matters worse. I will probably need to hand these plug-style WNGs back as they make normal life impossible for me due to not being able to hear my environment. What now? Should I just go for an open-ear design? I don't really trust these doctors anymore and I don't know what to do. This was my last hope and I have to go back to work next week... I'm so scared. I don't want to make it worse :( I've tried literally everything and I'm still spiking! The supposedly tinnitus-specialist psychiatrist/neurologist I saw prescribed me Xanax and Citalopram, he said that the Xanax is supposed to soothe tinnitus but it doesn't, and the Citalopram might even make it worse, I took a few doses but I'm not sure if I should continue... I've heard so many horror stories. Any ideas? I currently take 3.75 or 7.5g of Mirtazapine combined with 10mg of melatonin to sleep, otherwise the tinnitus keeps me up.

      ...this is a nightmare. I'm sick of normal noises hurting my ears and I can't habituate to constantly growing T :(
       
      • Hug Hug x 2
    2. Fangen
      Anime

      Fangen Member Benefactor

      Location:
      Stockholm, Sweden
      Tinnitus Since:
      December 2nd, 2015
      Cause of Tinnitus:
      Acoustic trauma (loud concert for 1h)
      Zen, where do you live? Is it possible for you to seek medical care outside your country? I live in Sweden and as it is a part of EU, I should technically be able to go overseas and get medical care if I wanted to.

      Also, don't think about suicide. I know where you are coming from and it might seem like a "good" option now but I think deep inside, it is not what you want, it is the "only" way you can think of that would stop it right now. I am not gonna lie, it took me more than a year to sort of getting used to and really habituate. I still jump like 1 m in the air when there is a sudden loud noise and get like a mini heart attack each time. But there is a lot that I still want to do in life and it sucks that I feel hold back by T. Like I get scared of long flights, or flights in general. I don't want to be at parties or loud places and it gives me anxiety. For example, I am going to GamesCom next month for work and I KNOW there will be a lot of noise, a lot of people, parties and what not. I have ear muffs that I bought but I feel stupid wearing them on the flight in case my coworkers would notice. I am trying to paint them completely black so they will not notice. All that gives me anxiety and sometimes I get really annoyed that my life have become so hold back by it. I feel like a boring ass person that always have to be outside of whatever fun that might be going on because I can't deal with the noise. I am sure you feel similar, but really, I still want to challenge myself and go overseas and visit other countries.

      Don't give in just yet, because heroes never die :)
       
    3. AUTHOR
      AUTHOR
      Zenyatta
      Depressed

      Zenyatta Member

      Tinnitus Since:
      2012/2017(spike)
      Cause of Tinnitus:
      Unknown/Ear-tooth infection
      @Fangen I'm Hungarian - but I'm pretty broke, I can't afford to go abroad for treatment. I've decided to hand these earplug-style WNGs back and go for an open ear design hearing aid with WNG functionality at Starkey. I'll pretty much have to DIY it at this point, it's the best I can hope for.

      It's not the T that really kills me - I've had that for years now (although a milder form that can't really be compared to what's going through my head right now) - it's hyperacusis. Sound hurts and it winds up my T, often giving me permanent noises. I currently have 8-10 different ones depending on the ear and the time of day. Everywhere I go, every activity I'd like to do is too loud and I don't think this is a quality of life I can accept. I've gone from being a normal person to being disabled in 4 months and I just don't want to live like that.


      Eh, Mercy's Rez is apparently getting reworked/nerfed soon, so I'm not sure about that... :p
       
      • Agree Agree x 1
    4. Fangen
      Anime

      Fangen Member Benefactor

      Location:
      Stockholm, Sweden
      Tinnitus Since:
      December 2nd, 2015
      Cause of Tinnitus:
      Acoustic trauma (loud concert for 1h)
      I was very blessed that my T fron NIHL was not accompanied with hyperacusis, even if I am sensitive to loud noises in general ever since. My brain is always anticipating that there will be a loud noise so its always in the flight or flee mode.
      I wish I could give you more helpful advice but I don't :( I can only relate to the struggle but I hope people here can help you with coping.

      Mercy will be nerfed so she can't rez in spawn point, that makes sense :p
       
    5. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      @Zenyatta, out of interest, why do you prefer the open ear design hearing aid over the ear-plug style WNG's?
       
    6. AUTHOR
      AUTHOR
      Zenyatta
      Depressed

      Zenyatta Member

      Tinnitus Since:
      2012/2017(spike)
      Cause of Tinnitus:
      Unknown/Ear-tooth infection
      @Fabrikat : I trialed the earplugs and they pretty much close my ears - I can literally not hold a conversation while wearing them, all I can hear is the noise mixed into my tinnitus. Everyday life is impossible when I have the things in, it's like being in a soundproof box with white noise coming from the walls. From what I've read, TRT devices are supposed to be not annoying/noticeable for the patient. Wearing the plug pretty much drives me insane, and I didn't have that problem when I tried on the open-ear hearing aid with the Starkey audiologist. Why do you ask?

      @Fangen Yeah... I actually habituated to my new T back in May. Things were going fine, the hyperacusis was disappearing and I more or less returned to my usual activities, with ear protection worn when appropriate... and then it snowballed again and hasn't stopped since. I have absolutely no idea why.

      I think that nerf is out already, lol... Blizz admitted that the whole "hide to rez" mechanic can be frustrating for both the Mercy player and the people playing against her and they're thinking about it. Zarya just got a pretty big buff to her ult on the PTR though, which will encourage Mercy players to play even more defensively and hide, so I'm not sure...
       
    7. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      Damn! I was thinking about the in ear style for myself! I thought they'd somehow get around the occlusion problem, but clearly they don't. Thanks for responding to my question.
       
    8. AUTHOR
      AUTHOR
      Zenyatta
      Depressed

      Zenyatta Member

      Tinnitus Since:
      2012/2017(spike)
      Cause of Tinnitus:
      Unknown/Ear-tooth infection
      @Fabrikat For what it's worth, I was told that "all the other patients made it work" and apparently it was "not supposed to block everything"... but I was also told by a different audiologist that every person is different and hearing is subjective and that if I absolutely hate the device, I should not purchase it. Especially since if I get it now, I won't be eligible for NHS support for another device for 3 years. I don't know. Maybe it would work for you, maybe not, but it was really unacceptable for me.
       
      • Friendly Friendly x 1
    9. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      I see! I guess I'll have to try them out for myself. I'll see what happens. Thanks!
       
    10. AUTHOR
      AUTHOR
      Zenyatta
      Depressed

      Zenyatta Member

      Tinnitus Since:
      2012/2017(spike)
      Cause of Tinnitus:
      Unknown/Ear-tooth infection
      Sorry I couldn't be more help! I hope you find the device that's right for you!
       
    11. threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      >implying that doing it in any way shape or form is going to make it suck less
       

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