TRT for Hyperacusis with Head Pain / TMJ, Neuralgia

Discussion in 'Support' started by David Vance, Jan 22, 2020.

    1. David Vance

      David Vance Member

      Tinnitus Since:
      Jan 2018
      Cause of Tinnitus:
      Chemotherapy, imbalances with the body.
      Hi everyone,

      My insurance is covering my TRT therapy, but I am wondering if it will work with pain hyperacusis? I get burning pains in my head, TMJ pain etc.

      Has anyone tried / had success with TRT and having these kind of pains?

      Suggestions, advice and experiences all welcome.

      This is so BRUTAL!

      I'm also on Gabpentin and Trazodone right now as well as Tecta for Reflux.

      Should I just try it?

      Thanks!
       
      • Hug Hug x 2
    2. Phat Tuna

      Phat Tuna Member

      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Hygienist
      Do you have TMJ disorder? Maybe it's causing the hyperacusis?
       
    3. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      • Like Like x 2
      • Informative Informative x 1
    4. Christopher805

      Christopher805 Member

      Tinnitus Since:
      May 2019
      Cause of Tinnitus:
      Neomycin
      @David Vance

      I am currently undergoing TRT for tinnitus and hyperacusis. My clinician strongly believes TRT can address hyperacusis. I’ve undergone treatment for 6 months; zero improvement. Some will say he has a bad or unqualified clinician. David, I can tell you my doctor is the Best, World Renowned with TRT. Trust me. One caveat some people feel their condition got worse after TRT. However, everyone is different. If you choose not to do TRT, listening to broadband noise is good for hyperacusis. Whatever you do good luck. God Bless. Peace.
       
    5. Jaysterk
      Blah

      Jaysterk Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Neomycin
      I have TMJ and hyperacusis. Is there a link?
       
    6. uae96
      Thinking

      uae96 Member

      Tinnitus Since:
      6/14/2015
      Cause of Tinnitus:
      Noise induced
      Does Gabapentin make your tinnitus better?
       
    7. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I have tried TRT. It didn't work for me. Kind of a scam, I think...
       
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    8. Phat Tuna

      Phat Tuna Member

      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Hygienist
      I believe there is. TMJ can do messed up things to your ears. Can even cause hearing loss.
       
    9. Jaysterk
      Blah

      Jaysterk Member Benefactor

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Neomycin
      Can this be fixed?
       
    10. Phat Tuna

      Phat Tuna Member

      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Hygienist
      It can. See a Dentist who specializes in TMJ if you suspect TMJ could be causing your symptoms. It's also other things. May need to also correct other things that are causing the TMJ in the first place. Like forward head posture, for example. Otherwise the TMJ problem will just come back later. It can be a complicated thing to solve. But my understanding is the earlier you address it, the better.
       
    11. ajc

      ajc Member

      Tinnitus Since:
      11/2002; spike 2009; worse 2017-18
      Cause of Tinnitus:
      Loud music - noise damage
      TRT has been proven ineffective by researchers. Don't waste your money on it.
       
      • Agree Agree x 4
      • Informative Informative x 2
    12. Jcb
      No Mood

      Jcb Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      AB5E1B83-F01F-4AFA-92C7-3CC930F33752.gif
       
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    13. LindaS

      LindaS Member

      Location:
      Canada
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      sensorineural hearing loss
      @David Vance

      Hello David

      I too have pain hyperacusis and get burning pains in my head and like you I am also on Gabapentin and Trazodone.

      I just started the Gabapentin and was told that it will take some time before it may work as it takes time to build up in the body.

      Is it working for you? Has it taken away all burning pain in your head?

      Do you take Trazodone for sleeping?
       
    14. AUTHOR
      AUTHOR
      David Vance

      David Vance Member

      Tinnitus Since:
      Jan 2018
      Cause of Tinnitus:
      Chemotherapy, imbalances with the body.
      Hey sorry for the later response, just seeing this now. The Gabapentin is working for me for other pains, but not sure if it's working for the hyperacusis. With the Trazodone, it helps for my sleep but gives me really bad headaches, and muscle aches. I tried to taper off of 50 mg, and the lowest I can go is 37.5 mg, I went to 30 mg and the hyperacusis was screaming so loud I couldn't even leave my house. I went back onto the 37.5 mg and it's now somewhat bearable but have extreme and I mean EXTREME HEADACHES. My doctors cannot figure it out at all.

      What dose of Gabapentin are you on and what dose of Trazodone and how are you doing?
       
    15. LindaS

      LindaS Member

      Location:
      Canada
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      sensorineural hearing loss
      @David Vance

      Hello David.

      I have discontinued the Gabapentin. I was put on 300 mg a day, then 600 mg, then 900 mg, then 1200 mg and it wasn't doing a thing for the burning/nerve pain on the top and back of my head.

      I am on 50 mg of Trazodone and I am finding no issues with it aside that it only puts me out for about 4 hours. After that, I find it can take hours to fall back asleep depending on how loud the tinnitus is or if I am worrying a lot about the hyperacusis.

      I find the hyperacusis is worse than the tinnitus. I can't drive, shop, shower, listen to music or tv, conversations cause pain after a very short time, and being on the computer or phone also causes pain. The pain is long lasting after the fact so I never know what low or moderate sound(s) are causing it.

      Have you tried Zopiclone for sleeping?

      Very sorry to hear about the headaches.

      Apparently there is some Rapid Access to Medical Specialists Clinic in Mississauga that my doctor is trying to get me in to see a neurologist. Have you seen a neurologist for the headaches?

      Wouldn't mind staying in touch with you as we seem to have some similar symptoms. If you're up for it, we can private message each other with our developments to see if they might be beneficial to the other.

      Warm regards.
       
      • Hug Hug x 2
    16. Juan

      Juan Member

      Tinnitus Since:
      08/2014
      Cause of Tinnitus:
      Several causes
      I have tried and it does not work.
       
    17. AUTHOR
      AUTHOR
      David Vance

      David Vance Member

      Tinnitus Since:
      Jan 2018
      Cause of Tinnitus:
      Chemotherapy, imbalances with the body.
      Hi Linda, how did you find tapering off of the Gabapentin, did it increase the hyperacusis or tinnitus at all? It's good you are not on it any longer.

      In regards to the Trazodone, glad you don't get effects from it like I do, they are not the best, and finding it hard to come off. I have tried Zopiclone yes, and that medicine increases my hyperacusis, it works so well though for getting to sleep!

      Haven't heard about the Sauga specialists and would have to look into that. I am seeing a neurotologist in Toronto in February, and apparently he knows a lot about the ears / ototoxicity etc. A member from here saw him and he helped her with almost pointing out the cause of her tinnitus, it's still in the works for them.
       
    18. Ava Lugo
      Gloomy

      Ava Lugo Member

      Tinnitus Since:
      10/03/19
      Cause of Tinnitus:
      Virus
      I'm so sorry Linda. Do you have reactive tinnitus, where tinnitus can ring very loud around things like fans and TV? I know you got pain but is your tinnitus reactive too?
       
    19. weab00
      Gloomy

      weab00 Member Benefactor

      Location:
      Joe Dart's basement
      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      some good mf music
      You guys aren't missing out on much, TRT has been proven clinically ineffective for noxacusis, although it can be efficacious for some mild forms of loudness hyperacusis. Don't listen to the shills and charlatans.
       
      • Agree Agree x 2
    20. LindaS

      LindaS Member

      Location:
      Canada
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      sensorineural hearing loss
      I did not find a difference in the tinnitus & hyperacusis with the taper. I know your appointment with the neurologist isn't until February... Have you been waiting long? If less than a year, would you care to share his/her name?

      I'm pretty scared right now as I have been put on Azithromycin for 3 days (after 2 antibiotics by IV for 7 days) for a pretty bad infection and I read that it is ototoxic. Unfortunately, I don't have a choice if I want to get better.
      I just hope 3 days of it does not make things worse for me.
       
    21. LindaS

      LindaS Member

      Location:
      Canada
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      sensorineural hearing loss
      Yes, it is reactive.
       
    22. AUTHOR
      AUTHOR
      David Vance

      David Vance Member

      Tinnitus Since:
      Jan 2018
      Cause of Tinnitus:
      Chemotherapy, imbalances with the body.
      That's good you didn't find a difference with the hyperacusis & tinnitus coming off, with some of these meds the withdrawal symptoms can be brutal especially with the auditory system. I really hope you don't get any spikes or setbacks with the antibiotics, I'm sorry to hear that.

      The Neurotologist's name is Dr. Rutka. He practices at Toronto General Hospital. He's got a book out on Ototoxicity. It was published in 2004, but it's good to know that I will be seeing a doctor who kind of knows his stuff.

      https://www.otolaryngology.utoronto.ca/content/john-rutka
       
    23. Ava Lugo
      Gloomy

      Ava Lugo Member

      Tinnitus Since:
      10/03/19
      Cause of Tinnitus:
      Virus
      That is like the worst tinnitus by far. I got it too and know how hellish it is. There's tinnitus but then there's TINNITUS. I hope you get better soon. One thing though, I don't know how some of us are going to get through Thanksgiving and Christmas with bad reactive tinnitus and hyperacusis.... since with the holidays, we are expected to get together with family.
       
    24. Ava Lugo
      Gloomy

      Ava Lugo Member

      Tinnitus Since:
      10/03/19
      Cause of Tinnitus:
      Virus
      I have a question too. Since you say you can't cook, drive or watch tv, what happens when you wear earplugs and do those things? Does it take the edge of the pain off with earplugs in or is it still too uncomfortable around noises?
       
    25. LindaS

      LindaS Member

      Location:
      Canada
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      sensorineural hearing loss
      @Ava Lugo

      With ear plugs I can still hear sounds and still get pain. If I wear ear muffs, then most sounds are pretty quiet. The sounds that are the worst are people's voices outside of the home (too loud even while wearing ear plugs AND ear muffs).

      I tried to cook with just ear plugs but some sounds including accidental sounds were still too loud. I now wear ear muffs to cook and do dishes.

      As for the TV, I feel like I've lost more hearing and my tinnitus can be pretty loud, especially in the evening. I would have to have the TV cranked up pretty loud and I can't because of the hyperacusis. So reading captions is the only option.

      I try to not wear ear plugs or muffs in the house but it is pretty quiet. I do quiet things like reading or drawing as they do not cause me to have pain.

      In order to drive, I would have to wear ear plugs and ear muffs and that's illegal.

      I have short conversations with my husband through out the day just for some sound but if they are too long, it causes pain.

      I don't know how I'm supposed to survive like this for the rest of my life.
       
      • Hug Hug x 2
    26. Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      I can relate you everything you’ve said. There are many sharp and high frequency sounds that are too loud and painful to me even with ear plugs and muffs. Including voices. My setback also now has a setback on top of it so even more sounds cut through my hearing protection, sigh. Makes it pretty hard to climb out of this hole.

      Just taking it one day at a time is all we can do for now, and hope a cure is on the horizon. ❤️ Take care!
       
      • Hug Hug x 3
    27. JayZee
      Stressed

      JayZee Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      12/2020
      Cause of Tinnitus:
      Nortriptyline / Hydromorphone / Unknown
      Hopefully you actually get to see him and he takes an interest in you. Recent online reviews indicate that you might only get to see one of his students at the clinic and that even if he sees you, it might be short and abrupt.

      Good luck and let us know how the visit goes.
       
    28. LindaS

      LindaS Member

      Location:
      Canada
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      sensorineural hearing loss
      Where did you find this information?

      I am waiting for changes to MAID in Canada (if it does not take too long) and hopefully qualify for medical assistance in dying if this does not get better.

      I don't want to go through the torture and time for TRT if it is going to do nothing or make things worse.

      My doctor and ENT don't know a lot about hyperacusis so I need some medical articles.

      If you have come across the information above in articles... Can you share please?
       
    29. AUTHOR
      AUTHOR
      David Vance

      David Vance Member

      Tinnitus Since:
      Jan 2018
      Cause of Tinnitus:
      Chemotherapy, imbalances with the body.
      Thank you for this heads up. I have advised the secretary that I am suffering from hyperacusis and tinnitus, and it's a very hard case to tackle. She did not mention anything about students, but maybe I'll call again and tell her straight up that I need his full attention, and not his learning staff. He's honestly the last hope that I have to help try to solve the puzzle.

      This happened to me when I saw a TMJD doctor in Toronto. I literally saw the actual doctor for maybe 5 minutes and that was it.

      I actually called the clinic today trying to get an even earlier appointment, but it's not happening. They didn't pick up and when I spoke to them last time, there were zero cancellations.

      Did you see Dr. John Rutka at all?

      Thanks.

      David
       
    30. JayZee
      Stressed

      JayZee Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      12/2020
      Cause of Tinnitus:
      Nortriptyline / Hydromorphone / Unknown
      I have not, but I live in the GTA as well (Mississauga) and am on the lookout for a good ENT for our issues, if such a person even exists around here.
       
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