All over the place

[hollyrain]

The very occasional 6 second screeching in my left ear that I'd had for years suddenly switched on and didn't ever turn off at the beginning of this year. Referred ENT, told 18m wait which would take me upto around Oct next year. I also have Pulsatile tinnitus which was initially noticeable right side when I go to bed, just like a baby heart monitor. So I've just been getting on with things, found playing rainfall helps me sleep. The screeching varied in volume. I also noticed various things really irritated me and made my head feel pressured like it wanted to explode, and made the screech ramp up in volume......low rumbles eg a train, helicopter, washing machine but also things like dog barking, emergency sirens, but mainly low rumbles, they really irritated me.

Last week I had a really severe left sided earache and since boy oh boy the PT is with me all the time, it sounds like the thud thud of a distant concert, plus my ears feel really congested. The screech is louder than ever, it feels like my head will pop. But my ears both feel clogged like I've been underwater, and the worst is when I speak I can feel my voice echoing, almost vibrating through my jaw and facial bones. This happened a few times before the earache, but has been permanent since. I find it really stressful, it's the weirdest thing ever.

Is this all Tinnitus related?? And any guidance how to deal best with it whilst I wait for Autumn 2024?? Thank you

[Beesmac]

Hi Hollyrain - sounds like you are really going through some horrible things at the moment and it is disgraceful that you have to wait so long for an appointment with ENT. Have you ever had a hearing test? Do you wear hearing aids? If not it may be worth getting this done in the interim whilst waiting for your appointment. At least they will look into your ears in case you have a build up of wax. Not good that you had earache and that should have been checked out as it could be an infection causing these additional symptoms. I’m sorry I can’t be of more help but I do hope you can get some relief soon . If you do get earache again I would go to A and E. When I had Labyrinthitis and thought I had a blocked ear I didn’t want to make a fuss and thought it would just get better. I have since been told that had I gone to A and E a steroid injection could have saved my hearing loss. Maybe a call to 111 may help speed things up for you. X

[hollyrain in reply to Beesmac]

Thank you. I had the hearing test in April. He said my ears were "squeaky clean" altho the scope didntvtouch my ears, neither did he pull the lobe down to be able to see. Both ears looked at in less than 10 seconds!! He said my hearing is fine, I generally have excellent hearing, so this clogged feeling is really annoying me whilst the increased volume is upsetting.

I'm away at the moment for another few weeks, I have managed to get appt with pharmacist tomorrow who is trained in several acute presentations, one of which, thankfully, is earache. If she can't help I will just have to go home to GP. Long term I looked at going private at least to just see somebody and ask about things....Happy to wait for NHS if I've had a consultation with somebody who can say what I'm experiencing isn't out of the normal. But none of the ENT specialists listed list Tinnitus in their remit, and only 1 mentioned earache. So I'm not sure it would be a good use of my money.

Sorry to read of your hearing loss, hope you are doing OK

Thank you again x

[Beesmac in reply to hollyrain]

I was told there was a waiting time of over a year so I paid to see someone privately and also had an MRI privately which to me was well worth the expense and not nearly as much as I thought it would be the consultant I saw put me on to his NHS list as I don’t have private health then I had to wait obviously but the fact that I’d had those initial consultations gave me peace of mind. After I realised my ear wasn’t just blocked but I had in fact lost most of my hearing in my right ear my tinnitus started within a week. I have musical ear syndrome - undefined repetitive music 24/7 and other noises. I was so distraught and my GP just dismissed it as he had never heard of it!! That was 2 1/2 years ago it started - it will never get better unless they find a cure!! You seem to be coping very well and I hope you are somewhere nice at the moment to take your mind off it. x

[hollyrain in reply to Beesmac]

I had thought about the MRI. Did your private ENT doc refer you? I need the open one, I had a dreadful panic attack in one many years ago, so last time I needed one I went privately to the open one. Felt so much better. I'd need to know exactly what scan I needed I suppose.

You are the 1st person I've come across to have musical ear syndrome. I can't even begin to imagine how that must be for you. GPs aren't fabulous....I was told I couldn't ask him about more than one thing when I said I had a couple of things (that in my mind were related.......PT anxieties and my blood pressure) so I said if I have 3 things can I ask for3 back to back appts or come 3 days on the run when you'd probably mark me down as a regular attender. Re the waiting time all he said is there is a backlog, shrug of shoulders and all finished.

I am somewhere lovely..... I have a problem dog and it is our bolthole for most of the year when life becomes too difficult for him. We do lots of leisurely beach strolls, I'm turning into a bit of a beach comber, and he is fascinated to watch all the sea sports. Then lots of relaxation and reading....and watch some of the rubbish my hubbies frowns at when I'm at home!! It's good therapy for us both, (me and my dog) but I'd never thought about what I'd do if I felt unwell whilst away, altho of course I registered him with a Vet lol.

With every best wish x

[Beesmac in reply to hollyrain]

Yes, I was recommended by a neighbour to see an ENT consultant who worked privately at our local Nuffield Hospital but also NHS at the Royal Sussex, Brighton (I live on the south coast). My GP when he initially referred me also requested an MRI which turned out to be so far ahead and I was so distressed I decided to go the private route. I was seen within a week then had the MRI the following week, which the consultant organised. He then called me himself and was able to tell me nothing untoward apart from some interruption to blood flow that had happened at some point and I was able to tell him I’d had a TIA in 2018. If I remember correctly it was only my head in the machine so I was ok with it however my niece can only tolerate the open scan. I was in a dreadful state, it was in the middle of the pandemic which didn’t help.

Sounds heavenly where you are and good that you are able to relax and enjoy some peace and quiet. Let us know how you get on. xx

[Happyrosie]

adding to what’s been said already. Assuming you’re in the UK. The National Institute for Clinical Evidence publishes guidance for doctors. If you go to the NICE website and put tinnitus into their search box you will see what pathways GP’s are encouraged to follow. The guidance was written with the input of Tinnitus UK, the specialist charity, and if you vent had a look at their website I’d encourage you to do so.

[hollyrain in reply to Happyrosie]

Thank you, I will do that. I want to be fully up to speed, so that's really helpful, thank you