Hi. I just wanted to follow up on this as people tend not to, I always find I follow it all the way through hopefully but dont get what I need.
I'm a 31 year old male who suffered from sensonureal hearing loss in my right ear about 5 years ago. It happened over about 8 hours, my hearing gradually getting worse and worse until it was gone. I was not treated with any urgency and kept getting sent away. I started suffering from vertigo and was prescribed cyclazine for, which made me feel a bit better but wiped me out.
My hearing never returned. Eventually I managed to get a referral to a proper ENT who said that it wasn't that uncommon and I should have been started on steroids ASAP but there wasn't much point (he was an unsympathetic turd). I did some research and found a good ENT in London and was referred there. I had an MRI and blood tests which came back normal. Basically my hearing has gone, they dont know what causes this but suspect a virus. A rapid course of steroids (prednisilone) is a shot in the dark approach that has shown some evidence of working but nothing particularly scientifically vigorous.
Fortunately at this ENT there was an attached clinical psychologist who helped me deal with the loss of such a treasured sense and the major anxiety of losing the hearing in my other ear. She was amazing and basically changed my life. I have skipped over a number of traumas and problems engaging with the health service on this one, it went on for years.
That was 5 years ago or so. The other day I was working from home and was on a number of conference calls. I thought that my computer was broken because it sounded tinny, like a speaker had blown. It wasn't until later when I started watching TV that I realised it was my hearing. I called 111 and was eventually told to go to my local hospital to see a GP (because of my history and at my insistence, they made a quick appointment in person). The GP I saw was great. I had all my previous paperwork with me which she read through and she phoned ahead and spoke to the ENT on call, gave me a letter and told me to go to their A&E and ask for the ENT on call which I did.
The ENT nurse came to get me after i had checked in at A&E and had some blood work done and was really nice. She was very sympathetic to my history and really looked after me. My ears were full of wax and she suctioned them out, saying in most cases that is what the problem is, and normally I would not have been seen, but given my history they were being very careful. I felt like the wax suctioning helped but it hadn't solved the problem.She started me on 40mg of prednisalone. She made me an appointment for the next day at the ENT clinic and I got home about midnight.
I went in the next day and had a pretty awful day battling with various receptionists trying to get things sorted. I'll spare you the details, it took me all day, but eventually, I almost broke down crying twice (and i'm not a cryer) I got a hearing test which showed that my hearing was normal in my good ear and that my ears were healthy. I still had the robotic sounds in my ear, so basically no diagnosis and no prognosis. I insisted that I stay on the steroids which the junior ENT (only person I could see) agreed to and prescribed me some, I asked for them to be upped to 60mg because in my paperwork that's what they had given me years ago. She did but only for a week. You have to be tapered off steroids, you can't just stop taking them, so i've been discussing with my GP about getting that sorted (she's great) - how the ENT let me take these quite dangerous drugs without tapering me down I dont know.
Anwway, I feel like my hearing is improving, although it is very early days and i'm very frightened. I dont know how i would cope losing my hearing, i dont know how i would work or manage a relationship or myself. I know I would have to but I dont see how and the idea terrifies me. I dont know how it's going to go for me but my advice to anyone searching for info on this is, dont mess around, this is potentially a medical emergency. Yes if you've got crap coming out your ear or something stuck up it or a severe cold then chances are it's just that. If however you are otherwise healthy and you just suddenly start to lose your hearing then go and see a clinician immediately and get them to give you steroids if they can't think what else to do. It may not work but it's something. Then push for an referral to an ENT. I remember reading years ago that the faster the loss comes on and the more severe it is, the more likely that it's serious and permanent. That was certainly my experience, but I know how devastating that will be to someone going through this now reading this.
And if you are in the same situation as me, with coping with losing hearing on one side, then it does get much much easier and dont be ashamed if you're devastated and not coping.
Best wishes to all.