Update

[hollyrain]

After my last post, just updating to say I saw the private ENT consultant on Friday.

Appointment......The first thing that blew me away at the appointment was that somebody was actually listening to me and asking me questions instead of staring at me like I'm an idiot like the last 2 GPs have done. I felt quite happy that he said he could send me for an MRI but I'd have to pay for it, he felt it wasn't necessary until I get my NHS appt through, he examined my jaw, neck, ears and I had a scope up both nostrils and ears, showed all good in ears, eustachian tubes good, sinuses good....altho one had a hole in it so he looked in there and said nothing to worry about...it was fascinating watching it all, he talked me thru it all. So all the issues I'd raised he discounted. He says he feels it is blood pressure related, and says I need to control BP, the longer it goes on, the louder it gets, the more I focus on it, and it makes me more anxious. Viscious circle.

He has written to GP to ask him to do some more audiology tests - mine were normal - but he felt they should be repeated and a pressure test done as I can't pop my ears. He is also asking for Thyroid test (don't ask me why), something else I can't remember (but I'll get a copy of his letter) and Tinnitus therapy. He advised to always have sound on - TV, radio, white noise, day or night just to try to stop the noise being the focus. Drink plenty of water. Take propranolol.

How do I feel? - pleased that he listened to me and reassured me.

Anxious that the PT and T still is louder than ever today (theres that vicious circle again), all day long, despite me surrounding myself with noise......I play white noise at bedtime and it really helps but its not something I can have playing all day!

Today, on reflection I still don't have lots of answers I hoped to have - why do I still get the echoing, the head pressure and earache and ear clogging / muffling........BP seemed to be what he focussed on although I'm not on BP medication as GP said he isn't worried about it.....but I do feel better for seeing somebody knowledgeable and KIND!! I chose carefully. I'm hoping I can reduce my anxiety and learn to live with it whilst I wait for my NHS ENT appt (can't afford to have private MRI etc). So actually - I don't believe I achieved anything other than somebody with the clinical acumen telling me he believes it is OK to wait until I see NHS ENT for investigation, probably Sept 2024. I would trust his opinion rather than my GPs, so that ticked one box.

I still question why (my) GPs just be kind or at least try to understand our very crazy symptoms. My last GP visit he told me it was probably TMJ related - the consultant said very unlikely. I still question why - when I have been told there will be an 18 month wait for NHS ENT - GPs can't show more initiative and initiate some investigations. Who knows?? ENT may not be the most appropriate speciality for our probable cause....it may be that some of us may benefit more from a Neurologist referral. Is it all down to funding? It would make so much sense, and potentially save a lot of unnecessary appointments for the patient.

He did tell me if you need to read, don't spend hours reading rubbish......go directly to the British Tinnitus Association and then you can trust what you read.....I told him I already did and found their (your) information invaluable!

[PuddingChipsAndGravy]

How do you find the Propranolol? I started taking it for anxiety caused by my tinnitus getting worse and I am not sure what benefits I am getting. I think it has lowered my heart rate when it gets higher but I want to get back to swimming and walking and not sure if it is harmful to any of that. My tinnitus got a lot worse around the time I started taking mirtazapine, which I stopped after 4 days but I then worry propranolol might affect it so want to ideally stop all medication. The thing is, I just get paranoid and imagine everything worsens tinnitus. I downloaded a Sound Frequency Generator and am now petrified just listening to that for a few seconds has spiked it.

[hollyrain in reply to PuddingChipsAndGravy]

I'm taking my first dose tonight. I never started it because I was worried about some of the possible common side effects listed (yes, I sit and read the leaflet end to end 😊) and as I spend a large amount of the year on my own and quite isolated, I was frightened.

But I am at home for around 4 weeks so think I'll start it whilst I know I have company. We were having a small (quiet!) celebration last night so were having wine, so didn't want to start it then. Both GPs and the ENT doc has said it may help reduce the level of noise I experience, so I will give it a go. Will let you know!! I do understand my anxiety doesn't help at all, but they said it may also help with that. Please ask your GP about swimming and walking - any exercise is great for our health and well being, I'm sure they'll encourage you to crack on, but it may help you to explain to them your concerns.

Best wishes

Holly

[PuddingChipsAndGravy in reply to hollyrain]

And you. I started taking it as I was having panic attacks when I was thinking of how bad I was getting. Also wondered if it would stop me stressing and therefore help my tinnitus long term. It seems to help very short term i.e. stopping panic attacks and lowering heart rate. I am just trying to get off as many medications as possible. I tried going back swimming but that seems to have triggered my ME/CFS again (I know I sound like a real hypochondriac) and I had no energy walking the other day, so don't know if that's the Propanolol. Good luck with everything.

[pelvicpain11 in reply to PuddingChipsAndGravy]

I have to warn you that propranolol is listed as an ototoxic drug.

[PuddingChipsAndGravy in reply to pelvicpain11]

Thanks. It's a strange one. I am in the UK and my doctors, specialists and pharmacists here seem to think it is OK, whilst I have seen US sites saying it is ototoxic. As I say, I don't think it is making my tinnitus worse but want to just try and get off all pills if I can.

[Happyrosie]

who can understand the workings of the NHS! If you really want to dig deeper and complain, your hospital will have a PALS (patient advice liaison) or you could contact the local clinical commissioning group for your area. Well that’s your specific question dealt with ……

More usefully, it’s good to know that you’ve found a supportive forum here, and that you were treated with kindness. One of the very many problems with tinnitus is that docs know it’s not curable in the ordinary sense, so they don’t know what to do and can be dismissive. If you haven’t done so already, you might want to look at the pathways that GPs are recommended to follow by NICE (National Institute for Clinical Evidence) by going to their website and inputting tinnitus to their search box, top middle of page. This was written with the inout of Tinnitus UK. I’m sure you are familiar with Tinnitus UK but it might be worth going through their website again for reassurance.

Onwards and upwards!

[hollyrain in reply to Happyrosie]

Hello Happyrosie

I spent my entire working life in the NHS, and know about PALS, as a result I don't want to complain, but just generally wonder about various attitudes. Its not just with GPs.

Yes, I've read the NICE guidelines, I've found them very enlightening, but I don't feel brave enough to tackle GP(s) about them.....my anxiety goes through the roof when I go.....its a vicious circle and I know it shows a weakness in me. But thats me, and it doesn't mean I deserve to be treated like a numpty because I am anxious.

Yes, I have utilised TinnitusUK for information numerous times and as I mentioned, the ENT doc also recommended the British Tinnitus Association (which takes you to Tinnitus UK), and said to pretty much stick to this site before any others. And yes, despite my anxieties, I have found this group not only very supportive, helpful but informative.

Thank you

Holly

[pelvicpain11]

I have to warn you that propranolol is listed as an ototoxic drug.

[hollyrain in reply to pelvicpain11]

thank you - I am only going to start today, and it is a small dose. However, 3 doctors have now suggested I should try it, it will help with blood pressure, headaches and anxiety. I can't complain to my GP if I don't follow his suggestions, but if I do struggle I will go back to discuss with him.

[Happyrosie]

ow I know you used to work in NHS - you’ll know propranolol isn’t the only drug for raised BP if that’s what you have. You could nip over to the hypertension part of Health Unlocked for a browse there too.

Propranolol for anxiety: I speak as the wife of a golfer. Golfers can get very anxious when they ar playing a tricky shot and some of them say that a beta blocker helps with this.

When I developed hypertension about thirty years ago the first line of action was atenolol, which certainly brought the heart beat down. Did nothing for the tinnitus though!!

Sadly, one of the problems with tinnitus is that, if you keep trying different things and wondering if they are ototoxic or if they will make other things (like hypertension or anxiety or indeed anything) worse then you’ll be listening out for the T. And that’s just what T likes.

A further line of enquiry for you: I have my ears suctioned when the wax makes me deaf. The audiologist whom I see privately (as GP won’t deal with earwax issues) runs anti-tinnitus training courses. It isn’t CBT as such and i don’t know much more because I’ve my own way of dealing with T. The fact that he runs these doesn’t appear on the website of the practice of which he is a partner. Presumably people mention T to him when they are being treated and he offers it then (I think on a one-to-one). So it might be worth you looking at local private audiologists and find out if they offer something.

[rabbits65]

So pleased to read your success with the ENT consultant. Goes to show that there are still a few doctors around with some compassion. After all surly it must give them some satisfaction seeing their patients going away with some satisfaction. Sorry though you’re still struggling. I still find myself plenty of walks in the fresh air my best medicine. I have over the years been prescribed so many medicines for “ this and that” and I have decided that enough is enough and I now take hardly anything. My best wishes to you .. 😀

[Sleepez479]

Hey! Was In the Same boat years ago. Decided to Study kinesiology after not finding anything for years. now work with college and professional athletes. Muscles are tricky. Here’s some info that might help

Upper cross syndrome