Dear Doctors

Discussion in 'Support' started by erniej, Sep 20, 2016.

tinnitus forum
    1. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      Dear Doctors,

      When we come to you and say that our ears are ringing so loudly that we can hardly stand it for another minute.

      If there is nothing that you can do to help us:
      Please don't condensend to us.
      Please don't treat us like we're displaying drug seeking behaviors.
      Please don't tell us to go home and run a fan in the background.
      Please don't snap your fingers on each side of our heads and ask if the volume is the same.
      Please don't treat us like we're exaggerating because you're doing just fine with your tinnitus.
      Please take us seriously.
       
      • Agree Agree x 4
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    2. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I agree with you but I wish my first ENT said or did anything you mentioned instead of telling me that people with t commit suicide!
      See, there's always worse:(
       
      • Agree Agree x 1
    3. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      If I gently run my index finger down the back of my head, when it reaches the base the pitch of my tinnitus changes and my left ear starts tingling and feeling like it's getting plugged up. I went to a spine specalist and he gave me six injections in the back of my neck for the pain. But when I told him of this I got the "Look."

      At a hospital I told the doctor that my tinnitus was so sensitive because of my neck problems that as I drove over bumps in the road with my car the volume and pitch would change. He wouldn't believe me. There's most likely that nothing can be done for me but if they refuse to listen how can they help us? We come away feeling helpless and hopeless.
       
    4. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Wow. I think I would write a letter to the head of the ENT department if a doctor told me that. Totally unprofessional.
       
    5. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I should have too but I was too traumatised by the whole t experience.
      5 years later his words are still haunting me daily.
      So much about some doctors!
       
      • Like Like x 1
    6. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      Valeri, I had the very same experience !

      I liked this ENT, he seemed to care a lot about T and H sufferers, not bullshiting me.
      My T just worsened a lot and I asked him : how much can people suffer because of their T ? Is there a limit in the suffering ?
      He said : every ENT will have a patient one day who will commit suicide because of T. I'm still waiting for mine !

      I found it funny at the moment, but it was a shock. I did not sleep AT ALL for the next 15 days. The real nightmare began at that period for me. I realized that I may be that next patient.
       
    7. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      I’m just feeling so overwhelmed with this. It’s been a year now since the shit really hit the fan volume wise. I get a couple of quiet days and then it comes roaring back even louder. I feel chewed up and spit out. I tried EVERYTHING. I have a friend that has it. He feels that because he copes fine with it that I should be able to also. I can’t get through to people just how loud it is. People tell me to hang in there that it will get better but it doesn’t. I’m sorry if I’m sounding negative and I don’t want to scare anyone but I don’t know what to do anymore.
       
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    8. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Wow that's bad! What an idiot!

      Off the topic but when my friend was diagnosed with post natal depression, doctor, while giving her a script for meds said: if this doesn't help then go and kill yourself!!!!

      They have no idea what effect those words can have on already vulnerable mind!
       
    9. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      All I can say is you're not alone!
      We are here for you!
       
    10. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Did you see my post about the French patients on Wikipedia? Now they complained about ENTs...
       
    11. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma from airplane descent, noise exposure? ETD? TMJD?
      Mine is extremely loud too. I can't concentrate or even watch TV lately.
       
      • Hug Hug x 1
    12. John G

      John G Member

      If a doc said that to me...he/she would be in a world of hurt...or dead
       
    13. Foncky
      Doubtful

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2004
      Cause of Tinnitus:
      An explosion, music, and fate.
      Well, I know... :D
       
    14. John G

      John G Member

      A member here @just1morething posted this article about neck issues.
      http://www.tinnitusjournal.com/detalhe_artigo.asp?id=236
       
    15. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I know what you mean about feeling stressed and traumatised, this can prevent one taking matters further. I had to report my 1st hearing therapist because of an unsavoury remark said towards me. I was going through a very difficult time with my tinnitus (it was in the early days) I wrote a letter to the head of ENT and the matter was dealt with quickly and never saw the person again. I later learned that other patients had complained about her conduct and the hospital let her go.

      Many Hearing therapists and Audiologists that treat/counsel tinnitus patients also have tinnitus. The hearing therapist in question, had never experienced tinnitus in her life and therefore had no understanding of the condition, or how to treat and empathize with people that have intrusive tinnitus.

      My second hearing therapist was a god send and has all the qualities that I believe a hearing therapist should have if they are to treat tinnitus patients. Not surprisingly, she told me one day that she was born with tinnitus. She is very good and I still keep in contact with her.
       
    16. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @ernej. Ernej, There are times when tinnitus can make us feel negative and there's nothing wrong with that. We have all been there and know what this condition can do to a person.
      Have you tried TRT (tinnitus retraining therapy)? Many people with tinnitus find it helpful. It consists of wearing white noise generators and having tinnitus counselling with a hearing therapist. I have had the treatment with good results. Please click on the link as you might find the information helpful https://www.tinnitustalk.com/threads/an-introduction-to-tinnitus.12100/
      Hope you start to feel a little better soon.
      Michael
       
    17. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      Speaking about doctors talking about people with tinnitus killing themselves. Last February I was so distraught over my tinnitus that I was thinking about ending it all so I had myself admitted to the mental health ward at the Beth Israel Hospital in Boston Massachusetts. After I was there a few days the doctor in charge of me had a meeting with me, with three doctors and three student nurses. He said that in some point in time, some doctor, gave me some medication that was ototoxic and damaged my ears. Then he went on to say that because the tinnitus was only to get worse and I would eventually kill myself and I needed my daughter to come in and meet with a social worker and the "team" which was him and two other doctors to prepare her for my impending death. I was on closely monitored schedule to taper off of 5.5MGs daily of Xanax when I got there. Against my protests he switched me over to 6MGs daily of Klonopin and tried to taper me off of it in only twelve days. On the twelfth day I collapsed and had to be transferred over to the medical building. I was sent back and released the next day. During this awful experiment my legs went numb and I still suffer from Post Acute Withdrawal. I contacted numerous lawyers but they all said that they didn’t handle that type of case. I recently reported him to the proper review board. All this because I asked for help for my tinnitus. Oh, and nothing was done to help me with my tinnitus.
      Also, they sent me a bill for $750.00.
       
    18. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @erniej Sorry to hear about the ordeal that you've been through. It seems no lawyers want to take on the bigboys unless it's an open and shut case and yours sounds like it would be a long drawn out thing. I take Klonopin/Clonazapam only when my tinnitus is very severe and find that it does calm it down. My ENT Dr told me it can be addictive so I'm careful. If it's taken too regular the body quickly habituates to it and a higher dosage is needed and addiction can set in with unpleasant side effects.
      On your profile it says tinnitus caused by: Loud noise exposure, that's why I suggested TRT which can help.
      Michael
       
    19. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      I was not going respond to your suggestion for fear of sounding rude or ungreatful, that's why I don't like emails or texting, people can't hear the tone of my voice, I get in trouble with my daughters all the time, but I'm not going to spend over $4,000.00 and wait up until 18 months to see if it's effective. A number years ago I used my hearing aid/masker as a TRT device and I received very positive results in about three weeks. I tried it off and on for the past year set at a very low volume and all it did was make everything more irritating. Also I really don't plan on putting up with this for another 18 months if it comes to that. It's a quality of life issue for me.

      Also, I know about the addictive hazards of benzos. I was on a slow taper off of 8MGs daily of Xanax that I sarted on about 15 months ago. I'm now down to just .375MGs daily of Klonopin.
      That's why after being tapered off of 6MGs daily of Klonopin in just 12 days I still suffer from Post Acute Withdrawal Syndrome that could last up to 2 years or never go away. I hope the doctor that did that to me dies choaking on his own blood. So, I was on 5.5MGs of Xanax, bumped up to 6MGs of Klonopin. Tapered in 12 days and then bumped back up to 3MGs a day and an injection of Atavan to stabilize me.
      Even a drop of 3MGs in 12 days was dangerous and left me f**led up.
      But when I started on Xanax back in 1991 I read that a person should have some in their system at all times to treat tinnitus. Worst advice that I ever came across. So between the PAWS and the tinnitus I'm hanging by a thread.

      IMO, if you can get away from using a benzo I think that's a good thing. Or do as Michael does and use them ONLY AS NEEDED! The longer your're on them the harder it takes the brain to adjust to tapering off them.

      If I had it to do over I think heroin would have been a better choice. I hear it's easier to get off of.
       
    20. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Very interesting post Erniej and thanks for explaining everything. It is a shame that tinnitus treatment can be so expensive and it is true there's no certainty of what kind of results one will get at the end of 18months to 2 years. I live in the UK and didn't pay for TRT treatment which I had twice. The first time was completely successful. However, in 2008 due to loud noise exposure (although I didn't realise) my HI-FI was too loud, tinnitus came back with a vengence and I was in torment for 3 weeks and returned to ENT and started TRT for the 2nd time with counselling. Lasted 2 years but wasn't as sucessful as the first time but there was some improvement.

      My tinnitus now has huge fluctuations in intensity: Silent, mild, moderate, severe and extremely severe. When it's severe and extremely severe and these levels are sustained for three or more days I have to take Clonazpam as nothing else will calm it down and it can be pure torture. When it's silent, mild, moderate I can easily go about my day with no problems at all. I still use my white noise generators and sound machine at night.

      Tinnitus is a complex condition that comes in many forms and intesities and no two people experience it the same.
      Wishing you the best of luck and hope things improve for you soon
      Michael
       
    21. Sam Bridge

      Sam Bridge Member

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
    22. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      Hi Sam,

      No, it's just so loud. I can't believe the mind/ears can produce something internally at this volume. I have a masker/hearing aid but I would have to turn it up so loud that it would cause more damage.

      And it has this piercing quality that reminds my of when I was a kid and a vacuum tube in the TV was starting to go. If I faced the TV just right I would wince and have to cover my ears and say, "Dad, you need to get the TV fixed." And a TV repairman would come to the house. Can you believe that shit? They would come to your house and repair your TV.


      In six more days Kratom will be illegal in the USA. Assholes.
       
    23. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      I called my doctor today and asked if she would let me try Riluzole for OCD and depression and hoping it would have an effect on depression. I have no idea if she will. She at least takes the tinnitus seriously and tries to help so I am fortunate with that.
       
    24. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Would lowering glutamate lower your T?
       
    25. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Yeah, and all great cardiologists have gone through at least three by-passes and had a heart transplant.
      You don't have to have the condition to qualify as a decent doctor. Being a decent human being comes first.
       
      • Agree Agree x 1
    26. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      :)
      lol...struck a sensitive chord did I....lol:)
       
    27. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      How does that joke go? A guy goes to heaven. He meets St Peter. Someone in a white coat goes by. The guy says to St Peter, "who's that?" St Peter says,"Oh that's just God, he likes to play doctor."
       
    28. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      Doctors really are pretty much useless for those of us who suffer T. Mental health professionals can also be as useless. This is a vicious cycle for those of us seeking any help for our "condition". A medical doctor HATES to prescribe benzo's, narcotics, and other controlled medications but will throw just about any anti-depression medication into you. I started on an antidepressant that was prescribed from my family quack. He never told me it was an antidepressant. I filled the script, came home and began as directed. Not 2 days later I felt like my left eyeball was wanting to turn inside my head!! I was floored when I googled the med. Cannot remember the name but I will tell you, I went back to my family nutjob quack and told him if he EVER prescribed me a medication without telling me exactly what it it, I would have him arrested!!

      You have to research everything about tinnitus, medications and other treatments yourself because the regular doctors are non believers in how serious this condition is, and typically have you down as a prescription benzo seeking patient or narcotic seeking patient if you suffer bad migraines etc. Same goes for just about any hospital you may visit for the real bad times your are going thru. They put you down as a drug seeking low life scum. Once your labeled as one, it follows you to almost every hospital and doctor in your area.

      I quit seeking any kind of real help from the medical community for my T. I DEMANDED my doctor prescribe me a Valium that I can take on my worse evenings. He prescribed a 5mg at once a day. I never use one a day so am able to store some for the future depending on shelf life. I am so careful to not become dependent on any habit forming drug. I sure as hell don't need another issue on top of those I already have!

      You all must take control of what you take for all the stress, anxiety and headaches that may come with this dreaded ringing. Those drugs may help calm you some, but your T is still there. Be as informed as you can and stop listening to any quack that may have an idea.
       
    29. erniej
      Assassinator

      erniej Member

      Location:
      Massachusetts
      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Not so sure now...
      5MGs of Valium is a pretty hefty dose of Valium. I started out at "just" .5MGs of Xanax as needed back in 1991. Then over the years as the tinnitus became louder I found myself taking it a little more, more often and finally I ended up at 8MGs daily. 8MGs of Xanax is equal to 80MGs of Valium. I never knew this until earlier this year. I did some research when I started my taper. One MG of Xanax or Klonopin is equal to 10MGs of Valium. As I said earlier that I'm down to .375MGS daily of Klonopin. I hate the way Klonopin makes me feel. I become a crazy person. My doctor wanted me to stay at .75MGs a day but I said screw that.
      Oh, if anyone has been on any benzo for any length of time and wants to get off of it. TAKT YOUR TIME. You're not running a race. For ME, I wish I never took the first Xanax.

      Even taken as prescribed benzo dependence is cunning and baffling. You wake up one day asking yourself, "How the fuck did I get here?" Then you're sick all the time from the withdrawal and you have tinnitus.

      I belong to another forum for people trying to taper off of benzos. What a bunch of horror stories. And one of the biggest complaints is that all of a sudden in the middle of their taper they have a horrible tinnitus that they never had before. I started taking Xanax for my tinnitus and it finally came around and bit me in the ass.
       
    30. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      You mentioned your 1st doc didn't have t and was terrible, your 2nd did and was 'god send'.
      I'm pointing out that your argument is not necessarily the common case.
      What chord?
       

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