Hi. I am asking for advice on behalf of a family member who is going through a terrible time.
Approx 12 weeks ago they had a ptoblem in one ear, deafness....this then resulted in tinnitus.
They have had scans, numerous GP appt & seen a consultant who offered little in the way of pragmatic help or hope.
It has driven my family member to the point of suicide. We as a family are trying to get help and support.
We have gone and are going around in circles.
My question is, who is considered to be the best go to consultant in the UK for tinnitus. We would like to get a second opinion and offer hope to someone who feels there is no hope at all.
Having been told " you just have to live with it" they cannot see anyway out but ending their own life.
We have reached out to NHS for mental health support and there is none, despite all the hype & spin... it is just all words.
On bended knee for help.
Thank you.
Written by
Naim1
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Good morning, sorry to hear your family member is going through this.
I don’t post often on at however I do keep up-to-date by reading posts by others.
Unfortunately there is no quick answer to this. Although in time things do get much better..
Mine started 2 yrs ago. Tinnitus can be so worrying as it’s so unnatural and doesn’t stop, making it very difficult to deal with. I went private for MRIs and ENT consultants who initially seem quite dismissive.. they wasn’t panicking like I was. Which really is a good thing, thankfully nothing sinister was going on.
Two years later, I can hear my pulsating T quite loud as I’m typing this, believe it or not eventually most people habituate and live with it.
at night I play white noise through my phone using the Beltone Calmer app. I avoid been in silence by playing music in the background whenever in an empty room..
I keep positive by understanding there is nothing life-threatening going on. I enjoy my life to the full, exercise, eat well, planter of outdoor walks and spend quality time with my family and friends.
It can be quite annoying, but at least not a terminal illness, which I’m very grateful for.
When my T first started, I would read posts like this thinking I would never be able to cope, no one understands mine is different? Mine is louder? How am I going to live with this? All these questions I would ask myself.. but eventually things will get better. Please tell your family member to stay positive , cherish all the good things in life, they obviously have a concerning family member in you to be grateful for. Keep strong and positive. X
It is early days for them and we are trying to keep them positive.
It is a she so I will use 'she / her'
She refuses to believe she can cope with it, refuses to engage with others who have it & can offer hope & advice. She sits in silence ( which must be the worst thing to do?) Won't try anything, takes to her bed for most of the day and has withdrawn from friends, work & all enjoyment in life.
It is heartbreaking to see.
I have advised her to join this fantastic group ( I have PMR and the PMR group helped me so so much) but she refuses to join ( hence me reaching out).
In her words the only way is to end her life. Her family is supportive but it is draining and so concerning that at any point she could do harm to herself. 😔
You haven’t said whether the deafness was connected to any other issues for instance nausea or balance. Or if the deafness has continued at the same level or if the deafness occurred suddenly?
If any of the above are true it is important that your relative continues to pressure the doctor for help or go to A&E or even book an appointment with a private ENT specialist. Sudden deafness is treatable, often successfully with steroids but needs action very quickly as there is a short window for success.
Thanks...their obviously is a full story to this. I don't have the full chronological series of events but what I do know is..
> Deafness came on sudden
> GP as much use as a chocolate fireguard
> Then the T came
> Weeks later...NHS- ENT recommended a scan..this was done and Steroid course recommended. ( which started & stopped quickly...I do not fully understand T but I fully understand my condition of PMR & I know how steroids are managed propely for that condition...you don't just stop them after a 2 day course)
> Scan was done...but told it could be weeks before anyone could look at the scan
> Private ENT consultant found...appt made...Scan assessed....told 1) The steroids prevented her from going totaly deaf in the ear 2) She has damage to her hair cells inner ear hence the T...3) " LIVE WITH IT" ( Bedside manner of a cockroach)
> She has started accupuncture & the practitioner has stated she had inflammation in her neck & around the ear ( common sense & sound logic says to me if inflammation is present then that could be pushing on something in or around the ear...making to situation worse?)
> GP consulted ...who rubbished what the practitioner said WITHOUT looking! 🤬
She now states the T is going to the other ear....and she is super sensitive to sound in that ear
> Audiologist appt secured for a weeks time.
Now, like all conditions...you can see good GP's / Consultants and bad ones. I have fully experienced that in the last 2 years with my PMR condition.
So I asked for second opinions and had to pay.
I found through the PMR help group, thee go to consultant in the UK for my condition. Having saw him, he made me 60% better within 3 weeks...
Hence my original question for T
Who is the go to expert in the UK for T who can offer a second opinion, review & guide???
I feel like for my relative we need to start again, sharpish with someone who can be trusted.
Hi there and I really understand your concern and how upset you all are. I developed ringing in my left ear in autumn last year and initially dealt with it quite well. Then after many sleepless nights and numerous fruitless Dr and ENT appointments went downhill rapidly - totally obsessed with the noise and panicking most of the time. My family were devastated and are still concerned. I am getting there slowly but it takes a while.
let me reassure you it does start to get better as the brain gets used to the noise, albeit slowly. Background noise at night helps if they can find a noise such as the sea or rain - there are lots of free apps.
The best resource I found was from Julian Cowan Hill - he had tinnitus for many many years and lives with it really well. He has a book/audiobook “Tinnitus- from tyrant to friend”. He has lots of YouTube videos and I think he does offer counseling (which you would pay for). To me he talks a lot of sense as he has experienced it and I use his videos and audiobook a lot.
If you contact Tinnitus UK they offer a free befriending service - I am using this and my befriender who has tinnitus but is managing it well, rings me once a week to talk, offer advice etc.
Lots of people on this forum have good advice too from their experiences.
Please don’t despair, you sound like a caring family and that’s the best thing someone can have when experiencing this.
I really recommend she looks at Julian’s info. He has a free app called Quieten where she can access loads of free sessions or you can pay for the full app. I think he has an online session on Friday 10th Jan in the evening- you could find this a start even if you join initially. I was in a very bad place too and am coming out of it, it really effects your nervous system initially- I now make sure I eat, go for walks(as it masks the noise being outside) have long showers (this seems to calm the noise/nervous system). Cleaning! I like to draw, is there something she enjoyed? There’s lots of online classes if she’s not going out. She will slowly find what works for her and will think at times - ooh I didn’t hear it then. You will get her back I am sure .
to find a consultant who is an “expert” - I’m very unsure how to go about this. Have you tried the helpline of Tinnitus UK? They wouldn’t I think be able to recommend a particular person but might know the right way to go about finding out.
Incidentally a quick burst of steroids for an ear problem is indeed one way of reducing an ear issue. I seem to remember my husband was prescribed 60 mg for three days - this was twenty years ago.
For some bizarre reason nobody seems willing to recommend ENT specialists. The only person who is mentioned occasionally is Julian Cowan Hill who is a chiropractor. The degree of help here is completely negligible.
I will take a look a Julian. ( thank goodness for him if he offers hope to all those suffering).
I trust my consultant who has a track record of delivering. I am going to consult with him and ask the question, if he knows of anyone he would trust & go to for T...or ENT.?
If so I will try & progress and feed back when and if apropriate.
Thanks for taking the time to respond.
You are all brilliant and I wish I could cure you all.
He sees patients in London but also does online sessions. I lived in London for many years and would definitely have visited him if I was still resident. However, regrettably I now live down in Herefordshire where ENT provision is negligible. I do so hope the situation improves for your relative.
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