I have not posted anything for a while. You may recall that I posted my journey with the neuromod device. (It knock me for six, caused nausea and put me back into depression!!) I still have to take medication for nausea as a result.
Here's a thought. " Hearing loss and Tinnitus are linked" Well, "No Sh$t Sherlock" I hear you say.
Four years ago a lovely doctor arranged for me to be fitted with NHS hearing aid maskers even though I had no hearing loss. Her view was that even if it helped 1% then it was worth it. I know that generally the NHS don't issue them for T. That is the "Good".
The "Bad" came when I saw the world's worst Head Audiologist whose 30 sec advice was to ignore it. The "Ugly" came when I was particularly low with T and a GP said " Cheer up, you're not dying"
Well I have just had a really "good" NHS Experience. I had a hearing assessment lately which I failed. It felt like a "Pass" as I now get to have proper hearing aids. They audiologist took ages to set them up but was ever so patient and determined to get them just the way that I wanted.
One program is the normal hearing aid that increases the level of high pitched sounds. I can then press a little button and then have the hearing aid plus back ground "pink" noise. This is very soothing and is really helping with my T management. I can wear then all day, and if having difficulty with T, then touch the button and a low shhhhhhh plays lightly in the back ground. The left one talks to the right so they both know what to do.
It was so nice to meet someone that really cared. I sent them a "Thank you"card to let her know that her actions have made a real difference to my quality of life.
I would love to hear your "Good, bad and the ugly stories"
Take care all.
Wishing you peace and quiet.
Ade
Written by
ade-the-pade
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Hi Ade. Great to hear you've seen a kind & caring audiologist who has helped you manage your T better. They must be worth their weight in gold! Here's my good, bad & ugly. The good - The BTA . They are amazing! I don't know what I would've done the past 12 months without the website, helpline & forum. The bad - I'm still waiting for help from the NHS . Not their fault of course. The ugly - The first six months of troublesome T last year were tough. Hope you have a good day 🙂
Really good to read about your journey, Ade, and to see you in this neck of the woods again - hope things continue in the right direction for you.
We've been working with IDA, the patient-focused advocacy group, to improve the training and empathy skills of audiologists and have begun to run our Tinnitus Adviser Training sessions again to help these skilled individuals support the person in front of them and not just the mechanical symptoms of hearing loss.
Hi Ade, GREAT to hear you have finally had a good clinician experience.
I have to be honest in the time I have had T my experiences of GPs, Audiologists and ENTs has been mainly been pretty poor.
The first ENT i saw said at the end of my appointment 'You will either habituate or it will go away, goodbye' although this was scientifically correct, I was in massive distress and was not the best thing to say when I was in such a bad way.
When I first got my T I saw 4 GP's who just wanted to prescribe tranquilizers and anti depressants before I had even had an audiology appointment and MRI.
I had an audiologist appointment 2 weeks ago and the audiologist I saw was pretty poor, the best example of this was when I was doing my hearing test he sat in the sound proof room with me and while I was doing the test his mobile went off! I rather sarcastically asked that the sound of his mobile wasn't part of the hearing test
Putting aside the last experience aside, as now I now live well with my T I can reflect and see why the ENT and GP's did what they did. For the ENT he wanted me to see/hear there would be a solution, I would say how he delivered this message was not patient focused and probably needed to work on his emotional intelligence. In regards to the GP's they could see I was displaying depressive behaviors because of the T and wanted to give me meds to help me cope but again that was not clearly explained.
I am planning on working with my GP's surgery to help them understand NICE guidelines and how they could improve how they handle T patients who are at the start of their T journey. In regards to the audiologist whose mobile when off during my hearing test, I am writing to the CEO of my health trust to give some constructive feedback (there were a few other issues with the audiologist as well) and again will be referring to the NICE guidelines in relation to patient centric care.
Thank you for your reply. It is great that you are actually doing something about poor care. I just moan!!My bug bear is when I tell people i have T and they tell me about how they had it after a concert and it was gone on the morning. Nobody, other than T sufferes, really know what it is like to live with T 24/7 every day of the year.
Some audiologists could certainly do with empathy skills
My new hearing aid maskers are great and keep me sane!
I think one of the keys of accepting our T and living well with it, is to not compare ourselves to others as we are all at different places on our T journey and each of our T is different. Those who say they have had it and its not a big issue I find are the same folks who lack empathy on other topics as well. Although, that said I normally 'educate' them on T where I can and ask them to reflect on how their comments can effect others
Hi Ade. Good to see you back in the land of the living again and getting on with your life despite the monster in your head lol. I can identify with your experience of the good the bad and the ugly and doesn't it speak volumes about the lack of training in the medical profession about tinnitus. Like you, I also had a senior audiologist once who told me to calm down as it was just a noise in my ear and it wouldn't kill me! At the time, I was in total panic mode, I wasn't sleeping well and felt as if my life was going rapidly downhill and yet this was the response from someone who was supposed to be a highly qualified hearing specialist. My GP wasn't much better and the first words out of her mouth were " there's no cure" so nothing I can do for you but I will send you to ENT for tests anyway. The end result was I was diagnosed with hearing loss at the top end of the scale and after a few weeks, was fitted with twin aids. They are fairly basic and although I hate wearing them, they take the edge of the tinnitus when it's really bad and by bad I really mean horrendous!
I asked about having maskers fitted ages ago and was really fobbed off but after reading about your success with them I think I will try that avenue again.
Anyway, I am so glad to see you are on the road to recovery and still managing to be very positive and upbeat about your tinnitus journey, Take care my friend and I hope things continue to head in the right direction for you.
Thank you for your reply. Great to hear from you.! The hearing aids with programmable masking are a game changer for me. My top end hearing is not great but I can get buy without them. It is great to pop them in when things gets difficult and they calm things down. With a touch of the button i can switch the masking on and off.
Be persistent with the NHS. You just need a caring doctor to approve.
Living with T remains a nuisance and I hate the bloody thing. I try to be positive, some days easier than others.
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