5 Years On... It Happened Again to the Other Ear (Success Story)

I wasn’t sure whether to post this story in success stories of within treatments but I feel that this post is best placed here.

It’s been a while since I have posted in this forum. I first came across Tinnitus Talk just over 5 years ago when I was struggling to come to terms with the sudden onset of Tinnitus and Hearing Loss which was bought on by having Labyrinthitis. Anyone that is new to this forum it’s a godsend! Please do take the time to speak to longstanding members such as myself to get the help and support you need or even just to talk though what you are going through. Some of you may have seen my yearly update posts about how I got back to living a “normal” life with Hearing Loss and Tinnitus. I won’t go into detail here of what happened but if you would like to read my full story to get a bit of background you can find it here - https://www.tinnitustalk.com/thread...and-tinnitus-positive-story.9802/#post-119489

As mentioned above, I’ve been living a very normal day to day life with Tinnitus and Hearing Loss in my right ear, that was the case until Tuesday of this week. Monday evening, I went to bed with some very mind Tinnitus in my left ear (the good ear) which didn’t worry me too much as from time to time I do get Tinnitus in the left ear which can last anywhere from a minute to a few hours. I thought I would go to sleep and I would wake up in the morning with it being cleared, I was wrong. Tuesday morning, I was awoken by a very loud and intrusive Tinnitus in my left ear, the feeling of fullness (like someone had blown up a balloon in my ear/pressure from altitude change on an airplane) and partial deafness. I went into a complete state of panic, burst into tears and though oh my god its happening again but this time I’m going fully deaf!

Having been through this before I knew to avoid seeing my local GP/Doctor at all costs as they are not trained in this type of thing and would try to convince me that I had an ear infection and it would “go away” as I was told many years go. So I took myself straight up to the hospital and went to A&E. I was seen extremely quickly and the on duty nurse tried to tell me that she suspected it was an ear infection and that it would pass. I explained about what happened to me previously 5 years ago and that the symptoms I had in my experience were more than just an ear infection and I asked to see an ENT (Ear nose and throat specialist). She could see how much distress I was in so made the call and got me up to ENT within the hour.

ENT were brilliant, I was seen by multiple doctors very quickly and had lots of tests done. Firstly, I had the Rinne and Weber tests which is where they use a tuning fork to test your hearing for sensorineural and conductive deafness (general and bone). I then had a Nasal endoscopy which is where they put a fibrotic camera up your nose and through your sinuses to check for blockages leading up to your eustachian tube. (The eustachian tube is a canal that connects the middle ear to the upper throat and the back of the nasal cavity. It controls the pressure within the middle ear, making it equal with the air pressure outside the body). The results for these tests came back clear so they sent me to Audiology for a standard hearing test and also a bone conduction hearing test. Even just entering the sound booth made me panic as I realised how bad the new tinnitus was and also could get a better sense of how dramatically my hearing had dropped due to the quiet room. The audiologist did the two tests and I could tell when she entered the room she didn’t want to deliver my results. The right ear as expected was below the standard 20 Hertz (Hz) and Decibels (dB) in the high and mid frequency’s, (20 or above is classed as normal hearing). What I didn’t expect was the results I saw for my left ear and as soon as I saw these I knew something was very wrong. I’ve always been above 20 Hz and dB in my left ear for all frequency’s but looking at my audiogram I could clearly see both my standard hearing test and bone conduction test showed a dramatic drop in mid frequency hearing ability to below 60 Hz and dB. I was devastated. I could see the Audiologist was devastated for me.

This is my hearing test from Tuesday:



This is the one from 2017 when I had my hearing aids fitted the left and right ear is on the same graph in the 2017 test. The X line is the left ear, you can see the decrease:



I went back up to ENT with my results. Neither the Audiologist or the ENT could work out what had happened. The said it was extremely odd for SSNHL (sudden sensorineural hearing loss) to appear in just the mid frequencies. They said it could possibly hereditary or I was just very very very unlucky. I felt that it was the latter. They decided to try me on a course of steroid treatment (Prednisone) along with an anti-acid (Omeprazole) as the steroids can cause acidic build up in the stomach. They then wanted me back on Thursday (today) to conduct another hearing test and to inject a steroid straight into the ear.

The car journey home was horrific, on the way to the hospital I could still have music on without being bothered by it but on the way back I started to get Hyperacusis where all I could here was beeps every time the pitch of the song changed. It felt just like 5 years ago.

When I got home I broke down in tears, the thought of going completely deaf terrified me, especially because I live alone. I thought “I cannot do this again, I cannot go through months of getting used to a new Tinnitus sound (that’s now 4 I have to contend with on a daily basis), I cannot have a Cochlea Implant… who will want to date the deaf girl with a big hearing aid stuck to her head! I had my little pitty party then actually sat down and thought it through. I have done this before and got through it, this time around I’m armed with knowledge and I know that whatever I’m feeling at this point there is light at the end of the tunnel. I’ve started the steroids within 24 hours of onset… that has to be good right? So what if I have to have a hearing aid, people can be prejudice all they want… they aren’t the type of people I want in my life! I was still feeling pretty low but honestly I didn’t feel half as worried/anxious as I did 5 years ago. The Tinnitus I can deal with, the hearing loss is my fear. I LOVE my live music and couldn’t imagine a life without it. I think it’s the frustration of something being so loud in your head and no one else can hear it. It’s trying to explain to someone the emotions your feeling, the noises you are hearing, how its effecting you emotionally and not only that, also not being able to hear what the person is saying back to you. All that can really lower your mood especially when to other people you look “completely normal” as Tinnitus and Hearing Loss isn’t obvious to see.

Sleep was OK the first night, I think I was so exhausted from a day of crying and emotionally exhausted from taking all this new information in. I stuck my room fan on and drifted off to sleep in the hope that I would wake up the next day and it would all be gone… it wasn’t.

Day 2, I went to work. I’m 21 days into a brand new job and didn’t want to be seen to be taking time off already. Even though my boss is great (fellow Tinnitus sufferer) and told me to take all the time I needed I couldn’t face sitting in the house listening to this new Tinnitus all day long and as I felt fine in myself, albeit a bit emotional, I decided going to work would be the best thing to do. I put my hearing aids in (even though they aren’t programmed for this type of hearing loss, they are cross aids so transmit sound from the good ear to the bad… pretty useless in this situation but they felt like a bit of a safety blanket) and went off to work. It was a struggle to hear my client and as soon as I got home I had a little cry. I truly believed the Prednisone would have no effect and I would have to start this recovery journey all over again with less hearing. I had a good FaceTime call with a friend Andrea (who I met on Tinnitus Talk) she kept me very positive as she went thought a similar relapse and Prednisone worked for her within 2/3 days. I was getting very upset and not being able to hear things I took for granted, the indicators in my car, my cat’s meow, pouring milk into a tea… I couldn’t hear any of that. My favourite songs sounded off key and bits of music were missing, it made me sad. Sleep again was OK because I was so exhausted from straining to try and hear all day and crying.

Today when I woke up I felt more positive, the fullness in my ear had started to subside, I could hear a little more than I could yesterday and the Tinnitus was marginally quieter that the evening before. Was this the Prednisone kicking in? I headed to the hospital for my 2pm hearing test. I always struggle with hearing tests as I never know whether I’m hearing a beep or my tinnitus (apparently even people without Tinnitus start to hear things that aren’t there in a hearing test) I thought I would have to have a standard hearing test and a bone conduction one but I didn’t need the latter. The audiologist came in with a huge smile on her face advising me what my hearing in the left ear had gone back up to “normal hearing levels” I just burst into tears of happiness and couldn’t stop thanking her. I took a look at my results and although my hearing still isn’t as good as it was before in the left ear its “normal” which is more than enough for me. I asked why my hearing was still slightly muffled to which she advised it will be getting used to the Tinnitus again, once I’ve overcome that the muffled feeling will go which to be honest I should have known as it’s the same as last time round. I could see in the Audiologists face that these were the types of results and emotions that makes her job so worthwhile, she was genuinely over the moon for me.

Still not back to what it was in 2017 but back to "normal", so happy!



I headed up to ENT where the specialist advised me because of the rapid increase in hearing ability there would be no need for me to have the steroid injection (thank god as I was dreading it) but to just carry on the 7-day course of oral Prednisone. I thought that they would discharge me there and then but they want to do some extra tests just to rule some things out to try and give a proper diagnosis of what happened and also because they are a university hospital they would like to do more research on cases like this. The more I can do to help them, understand this the better in my eyes and I was so humbled that they didn’t just dismiss me, they actually want to do more to put my mind at rest. They have taken bloods from me today to rule out auto immune disease, I’m booked in for an MRI to rule out any kind of tumour on my vestibulocochlear nerve (ear nerve) and also another hearing test in a few weeks to make sure there hasn’t been another decline.

The only thing I can put my fast recovery down to is the Prednisone. This is my point to this very long winded story is if you every have SSNHL or sudden onset of Tinnitus GET PREDNISONE/STEROID TREATMENT. There is a 24/72 hour window for success which for first timers is usually too late as they will be advised by a doctor that it’s an ear infection, leave it for a week or two, end up on a forum like Tinnitus Talk and then realise that steroid treatment is an option.

I honestly cannot thank the staff in the John Radcliffe hospital in Oxfordshire for their prompt, professional and friendly care that they have given to me. I’m so grateful for the NHS. A lot of UK citizens moan about it but we are very lucky. An MRI costs hundreds of pounds… Steroids cost a lot of money and I don’t have to pay for it so I am very very grateful. (yes, yes I know I pay national insurance but you know the point I’m getting at)

I still have the Tinnitus but I’m only on day 3 of the steroid treatment and it already has got a little quieter so I’m keeping everything crossed for a full recovery. I have added the full size pictures of my hearing tests below so you can see the change. One from 2017 when I had my hearing aids fitted, one from Tuesday and one from today.

I hope whoever is reading this, it’s given you hope that you can get through this whether it’s your 1st, 2nd 3rd or 10th time of going through this horrible process.


All the best

Caff xx

 

So glad you're better!!