To Tinnitus Talk Members, Your Help Would Be Appreciated (Your First Experience with a Doctor)

Discussion in 'Support' started by Michael Leigh, Sep 30, 2016.

tinnitus forum
    1. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Dear Tinnitus Talk members.

      I would appreciate it if you would please spare some time to give me the benefit of your experience, when you first went to see your GP or family Doctor for help with your tinnitus. For instance, were you told that familiar line:

      It’s tinnitus there’s no cure you’ll have to learn to live with it? How did that make you feel? Perhaps your doctor showed more understanding and you felt they listened - I’d be interested in your thoughts.

      I would like to know if you have been referred to ENT for tests, and if so what were they? What was your experience like with your ENT doctor at the first consultation?

      My first ENT consultation didn’t go down very well. I was in a lot of distress and felt the doctor was cold and aloof. Making matters worse, after my hearing test I went back to see the consultant and found eight student doctors in the room all sitting in silence. I wasn’t even asked for my permission or if I minded them being there which I thought was wrong. I was in a lot of discomfort with my tinnitus so didn’t bother to complain. That was 20 years ago. Thankfully things have changed for these days they ask a patients’ permission.

      Thanking you in advance for any help that you can give me.
      Yours Sincerely

      Michael
       
      • Agree Agree x 1
    2. slipware
      Cowabunga

      slipware Member

      Tinnitus Since:
      2012
      I guess it's all according to what the suspected cause was. My GP immediately suspected I was a medical emergency and got me straight to hospital. I saw ENT within 24 hours of SSHL. I had an MRI, followed by every test available. Then fitted with NHS hearing aids, which help hearing but not tinnitus, and follow up for 2 years. I cannot, from the onset, fault my treatment, and the NHS is awesome. True, there is nothing can be done about the continuing buzzing/roaring but hey, I'm lucky, I think... (Sometimes), though I so miss silence, very much.
       
    3. Sam Bridge

      Sam Bridge Member

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      I was actually seeing a private doctor for somehing else because my nhs gp kept fobbing me off so eventually i went private. He asked me if i had any other issues and i mentioned this strange noise in my right ear, he referred me to an ent(private). This seasion was okay , I was more concerened about my hearing level than the tinnitus. He did some standard tests (tuning fork, and the one where they check for pressure in your ear) as well as a standard hearing test. He asked me some questions about t bur nothing was offered to help me otther than to get an mri done. He wrote a letter to my nhs gp reccomending i have the mri. At least i didn't have to pay!

      The hearing test revealed i had mild noise induced damage at 3khz and 4khz.


      Have been offered no other help from my NHS who i think are generally rubbish if your of a young age and have nothing immediately obviosuly wrong with you.
       
    4. Ecip

      Ecip Member

      Location:
      Edmonton, AB
      Tinnitus Since:
      4.11.2015
      Cause of Tinnitus:
      Still unknown... possibly noise exposure?
      Took me three doctors until one decided to send me to an ENT.

      First doctor said to come back if it gets worse. Second doctor said he can't find anything wrong and to get a hearing test.
      Third doctor took his time, I spent maybe 45 mins in his office, and agreed to prednisone (2 weeks in, I believe).

      Then first ENT wasn't interested in seeing me.
      The second ENT saw me within a week or so, spend maybe 15 minutes me. Looked in my ears, nose, did the tuning fork thing.. Sent me to get an MRI and an xray of my upper neck. He thought it could be something with the vertebrates. Applications tests normal, says to get used to it, come back if it gets worse.

      Family doctor sent me to an neurologist. He was stumped, as I suspected, offered antidepressants that are supposed to help with idiopathic tinnitus, I refused. Said to come back if other symptoms develop.
       
    5. slipware
      Cowabunga

      slipware Member

      Tinnitus Since:
      2012
      Can we state if in the uk and used NHS?
       
    6. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @slipware Hi slipware. It would help if people tell me which part of the world they live but if they choose not to say that's is ok. I would like to hear what kind of help people have had for their tinnitus .Please state if you're in the uk and having NHS or Private treatment.
      Many Thanks
      Michael
       
    7. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
    8. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      In brief, my own NHS GP didn't really even know what to do, so my parents paid for me to see a well regarded private ENT. He cared even less than my own GP and left me feeling sick to my stomach - he was so cold and kept talking over me and telling me his thoughts, rather than listening to me.

      Eventually, I managed to be referred to the audiologist at my local NHS hospital. She was kind and didn't feel like my tinnitus was the same as any of the other thousands of cases she had seen because it endlessly kept changing - in excess of 11 different tones have been observed. This resulted in me being sent to an NHS ENT and he was lovely. He genuinely did try to get the the bottom of it.

      As it happens, he was unable to find anything abnormal (other than apparently minor ETD), but an abnormal cause is likely to have abnormal symptoms and progression. but he agreed it was probably best to stop the drug that had caused it in the first place - until this moment, every other doctor had told me not to. His final words to me were "It will get easier in time, even if it doesn't improve". That sentence alone, gave me the first support from any medical professional.

      I think it is unfair to universally criticise the NHS. I think they do the best they can under increasingly difficult circumstances.
       
    9. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Owen Very informative Owen, thank you.
      Michael
       
    10. Sam Bridge

      Sam Bridge Member

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      @Owen yeah true i can't speak for the whole of the nhs, just my gp i have had a bad experience with.
       
    11. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      For me I was seen to really quick as got fast tracked for Menieres.
      I got seen by audiology and given a masker and did a tick chart and when seen again given another masker for my other ear and that was it.
      Still seen by ENT for a while then dischharged on medication...lots of love glynis
       
    12. Candy

      Candy Member Benefactor Team Awareness

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      UK - London

      - Went to GP who said it was Tinnitus and referred me to an ENT due to how the Tinnitus appeared suddenly, in case it was an acoustic neuroma.

      - Decided to go to private ENT who was concerned with hearing loss. When standard audiogram revealed normal hearing, she said "good news". Me "what about this screeching noise I came for?" ENT "that is mind over matter, nobody walks around with a drill next to the ear".

      -Then she sent me to see an audiologist colleague of hers who told me I'd get used to it and the only people that didn't were anxious people. He was also private and I could only see him up to diagnosis stage as my insurance only covers diagnosis.
      Who can argue with that? If u don't habituate it's your fault...that's the implication.
      Three months gone and noise can be pretty awful at times even though my anxiety levels have gone down and have moved to a general low.

      - Anyway went back to GP, another one was on duty, to ask to see the NHS audiologist. He asked why and what were my expectations. This he said was not a life sentence and my reaction was due to anxiety, try an elastic band or counting. What all day long??

      -Went home, reflected, went back and demanded a referral to the NHS audiologist. Granted. Saw NHS audiologist after a few weeks who was patient and understanding.

      - She then referred me to NHS ENT as standard practice, whom I saw two weeks ago. He accepted tinnitus could be hard to deal with. I said "what can u do to make me better". He said they only offer conservative treatment. Me "ok which treatment?". Him "relaxation".
      Me - thinking "is this some kind of joke" and leaving after being told I will need an MMR. He also added that Jaw issues were extremely unlikely to cause T and that it was a neurological condition.

      - On holiday met an ENT friend of a friend who said - yes tinnitus is annoying, distract yourself and btw given no hearing loss, definitely TMJ.
       
    13. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      I had a great experience with my ENT. I was expecting the same old news but none the less wanted to meet this guy and hear his thoughts. At the time I could still hear speech in my left ear so it was no big deal to keep this appointment. I was called into his room, he sat down in his chair beside me and placed his hand on my shoulder. He said " Mike I am terribly sorry to hear about this loud tinnitus you have and also the hearing issues". He looked me square in the eyes and said he also suffers tinnitus and it almost drove him crazy. I was floored! Not what I was expecting. Right away I was able to bond with this specialist and hear his thoughts. As suspected the news I received from him is pretty much the news you hear a lot on here. Do your best to protect your hearing now, get ready for many bad days, and feel free to come back anytime you need more help. I wish every ENT had first hand knowledge of what we encounter. They still cannot do much but it sure helps to know that they REALLY know what you are dealing with.

      Fingers crossed for better treatments in the days and years to come everyone. Much love from Ontario Canada.

      Mike
       
    14. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
    15. MikeP505
      Curious

      MikeP505 Member Benefactor

      Location:
      Ontario Canada
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      @Michael Leigh

      My pleasure mate. Hang in there buddy. We are all here for each other. Feel free to drop some weight on my anytime you need to unload. It's actually good for T!!
       
    16. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Will do Mike and wishing you all the best
      Michael
       
    17. Marie79

      Marie79 Member

      Location:
      USA
      Tinnitus Since:
      2/1/16
      Cause of Tinnitus:
      Ear infection
      My ENT told me it would most likely go away when the ear infection cleared up.
       
    18. Kazue

      Kazue Member

      Location:
      USA
      Tinnitus Since:
      09/19/2016
      Cause of Tinnitus:
      Unknown
      Went to urgent care, they said my eardrum was pink. They wanted to make sure it didn't have a hole in it so they referred me to the ENT. I was referred to student audiologist where my hearing was tested. My hearing was normal and that basically concluded it. They gave me a packet about T and sent me home. Haven't been back since....
       
    19. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      1: "Oh there's no treatment for that", followed by "maybe you've had a stroke" as I was walking out the door. 1st ENT consultant.

      2. Eye & Ear Hospital: "We aren't really interested in seeing you unless your hearing is dropping in and out". 2nd ENT consultant.

      3: "Its just the kind of thing that happens when you get to your age". Consultant Emergency physician.
       
    20. Dominic1955
      Depressed

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      I am a physician called my associate ent, I was hoping it was wax but instead I had SSHL was treated with intratympanic steroids and oral steroids, I ordered my own MRI with contrast with special attention to 8th nerve,ordered blood work including Lyme titers all negative.
      My hearing has not returned and T is loud
       
      • Hug Hug x 1
    21. MrBonk

      MrBonk Member

      Location:
      Winchester, Oregon
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      ETD/Insane sinus congestion/TMJ/mold allergy/dog bark??????
      When I went to Urgent Care, they basically gave me a sheet of paper about Tinnitus and some meds to help me sleep.

      When I went to my PCP, he said it was normal and would pass with the sinus issues in a few months. Wouldn't refer me to an ENT, said he would say same thing.

      Finally got an ENT appointment. Wait time: 5 months. Not that it will do anything good, maybe they'll figure out my sinus issues at least. I don't know what to do about the TMJD symptoms, I don't make a lot of money. Won't be able to afford to see anyone about it.
       
      • Hug Hug x 1
    22. volsung37

      volsung37 Member Benefactor

      Tinnitus Since:
      2014
      I am in the UK and have had mixed experiences.
      Two years ago I came down with pulsatile tinnitus. The first GP I saw was sympathetic, referred me to ENT. A month or so later my eardrum ruptured and I went to emergency ENT. Again very well looked after by the doctor. They arranged for an MRI. The appointment came within two months which is very good for NHS with the pressures the system is under. I cancelled the MRI as I felt my condition was improving. The PT went away by itself. Then 8 months later a different type of T developed. Much louder and more intrusive with associated symptoms such as muscle twitching and TTS. My experience with the system this time was a bit different. One locum GP wouldn't prescribe me sedatives as she said I had to learn to sleep without meds. This was at the beginning of all the new sounds. This terrified me as I was barely sleeping as it was and feared I would lose my livlihood. She gave me a web address for 'mindfulness'. I was able to source some sleeping meds myself. Next I was referred for CBT in May 16. I still haven't had that appointment. My GP referred me for an MRI again urgently. The ENT downgraded the request to non urgent so the earliest I would be seen is June 17. I had the MRI done privately for my peace of mind. I did get an audiology appointment. They tested my hearing back in July. The audiologist assured me he was going to get me an appointment with a specialist in tinnitus. I haven't heard anything since. Mind you he did say 'the squeaky wheel gets the oil with the NHS' so maybe constant nagging would have got me somewhere.
       
    23. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @volsung37
      Although I have only asked for people’s experiences with the help they’ve had for their tinnitus via their doctor. Your post has been informative and of much help and well appreciated as other posts are on this thread.

      On another matter, I would just like to say if your symptoms persist keep going back to your GP and ask for a referral back to ENT. The tests that you’ve had so far, I assume show there is no underlining medical problem that is causing your tinnitus? If this is so, was your tinnitus caused by loud noise exposure?
      Michael
       
      Last edited: Oct 9, 2016
    24. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      For me, I was in Newcastle (upon Tyne) at the time my tinnitus started.

      I went to my GP, they didn't get it but referred me to an ENT. Because it was on one side only to begin I got an MRI, tympanometry and hearing test (which was not the most accurate because I could see the tester triggering the notes from my soundproof booth).

      I went to the consultant to get the results, he said "you have tinnitus, I'm afraid there is no cure, you're just going to have to live with it". He was wholly uninterested, that sentence was my cue to leave.

      That was it. I didn't get any help, no information or follow up. I had to do all of my own research, which as we all know can lead to a lot of misinformation as well as the good stuff.

      I had a second experience in 2005 when I lived in Brighton. They were better, I got WNG's but no TRT, I just had to try and understand how to use them myself. At that point my H had really surfaced, traffic noise was the worst for it.

      After a little bit I tried to access more care in Brighton, hoping for TRT or CBT. They didn't provide that, instead I ended up at a sort of group session where I was at least 30 years younger than the youngest there. To try and get more help I would have had to start at my GP again so I just gave up.

      All experiences were with the NHS.
       
      • Like Like x 1
    25. volsung37

      volsung37 Member Benefactor

      Tinnitus Since:
      2014
      @Michael Leigh
      The tests so far have shown up very little. The MRI showed some possible inflammation of the right mastoid which may or may not have something to do with the drone in that ear.
      I'm pretty sure my tinnitus is not due to noise exposure. I would link it to chronic ear infection which caused two punctures in my left eardrum in 2014. I will persist with the GP. Good luck with your research.
       
    26. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
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