Hi - I never post on any forum but reading the posts above really gave me hope in what seemed to be a terrifying and sudden experience I had/have with this 12 days ago.
IMPORTANT: To re-iterate the above, if you experience sudden hearing loss in one or both ears, DON’T wait, and DON’T just go to your GP/local doctor - Go straight to Emergency services at your nearest hospital. The NHS classifies this as an emergency even though it’s not in their main list of emergencies, and waiting more than 48-72 hours from sudden loss of hearing severely diminishes your chances of getting your hearing fully back. It was nearly too late for me because at first I didn’t know what to do.
Note on the below: This is a fairly long read as it covers my personal experiences on recovery, the highs and lows and things I learned throughout. It does include several things you may find useful should this happen to you, including some tricks I tried to improve my chances (some scientific, some not) of getting my hearing back, with some of these actually working for me.
Thus far I’ve got back from absolutely hearing nothing (when even my ear felt fully numb due to no sound) to a current ~80-90%% restored. Very positive despite what was terrifying to begin with (perhaps the most terrifying experience I’ve ever had), and ~12 days later I can now make out voices clearly (on and off it being a bit ‘tinny’ at times), the direction sound is coming from. Volume of heard sound seems to be the main thing now as it’s a little lower than my right.
There is hope and I encourage anyone that has this to force yourself to remain positive and take every step you can here as the first 1-2 weeks following SSHL is the most crucial of all.
So my story, just over a week ago (Fri 28th Oct '18) I woke up and was 100% deaf in my left ear. No loud sounds before or ‘pops’ in my ear before this just suddenly happened. Just gone and my right ear was just fine. While I found it very weird I wasn’t that worried at the time. Not the case and I should have gone to A&E that same day.
That night however, I didn’t sleep well and ended up getting up around 3am the next morning as I just couldn’t sleep. Hearing was still gone. Now getting more worried and looking at all sorts of things online to figure out what was going on everything I was reading pointed to an inner ear issue, which in itself can also be quite un-nerving to read because if it’s SSHL there’s a good chance if the ‘hairs’ in your ear are damaged then hearing may not ever come back, or perhaps only in a diminished capacity.
Finally, the disclaimer before I continue, I’m not a medical professional at all and all of this is my own opinion, personal experience and observations here, but hopefully this may help someone that gets this issue. Normally i’m very calm and ‘centred’ no matter what gets thrown my way in every walk of my life, but not this time as I never knew this could happen or was possible, nor thought it would happen to me.
Anyway, that Saturday morning I called 111 and the nurse was very helpful in asking the right questions to point me in what I thought was the right direction - the local walk in centre which opened at 8am. I arrived there early and was the 3rd person to be seen. Despite this however, the GP wasn’t helpful. She took a look at my outer ear, found it was clear / clean and did mention I needed to go to see ENT, but she couldn’t refer me because I wasn’t registered with a GP.
Long story short, I’m 33 years old, and count myself lucky that in 14 years I haven’t needed to use my GP once nor any NHS services (other than the dentist which is separate to all of this). Turns out, I hadn’t used my previous GP in so long I wasn’t registered anymore.
So the GP on that Sat (after my ~3 min session with her) had already flagged she couldn’t help me til I was registered, oh, and she said registration takes about a week and I would need to wait before coming back to then get a referral, enabling me to go to ENT. I’d probably be deaf now if I’d followed this protocol.
Now I was terrified having read before about the 72 hour window online, and became quite insistent with the GP that there had to be a way. Eventually she did mention as I was leaving the room I could try my chances at A&E but odds are they would send me back because ‘procedure’ dictates that a referral is needed to see ENT. This will be my last negative comment on that experience as after that session the rest of my experience with the NHS was far better since, but I was disgusted at the lack of caring this GP presented, the ‘procedure’ mindset vs. putting the health of the patient first (this is the NHS after all not some private insurance company), and finally her inability to recognise the possible urgency of my condition. This is also outside of my other thoughts of what have I been paying into via my NI contributions that have been substantial for over a decade. The treatment however after that terrible initial GP has put my faith fully back in the NHS.
Anyway, I spent the next hour in the GP reception filling in the paperwork, getting copies of bills for proof of address etc. (I had brought my passport too just in case). The reception as it happens recognised how worried I was straight away and processed my paperwork then and there - no week to wait. Very nice, empathetic and helpful, and the girl at the desk booked me in for a follow up appointment on the coming Wed, and I left/went home feeling a little better about the situation.
Later that Sat night, I started thinking about the situation (it was all I could think about), and it came to mind, ‘what was this Wednesday appointment at the walk in centre for?’. After a look at the walk in centre online, I noticed there was no ENT department and it came to mind, all they’d do would be set up the referral I needed more urgently. So the following morning (Sun), I got up around 4am still unable to sleep and started looking at A&E criteria for what an emergency is. Loss of hearing isn’t in the main list but I did eventually find it after some digging that this is an emergency that needs dealing with asap.
So I went to A&E around 9am and was initially referred to the minor injuries unit for an initial examination. Side note, I did find it quite difficult to hear the person at the A&E reception because quite a few people were talking in the room and all the sound just blended together. Quite disorientating even when the person you’re talking to is directly in front of you.
Minor injuries-the doctor took a look at me (outer ear), checked my blood pressure (little high) and confirmed I had none of the other symptoms such as vertigo, blurred vision, balance issues etc. - none of which I had. They asked about a referral from my GP and when I mentioned about the ‘procedure’ GP, he rolled his eyes at me and a few moments later I had an envelope handed to me with directions to go straight to ENT. Wait time for minor injuries was around an hour, and I brought my work laptop with me to do a bit of work while I waited which really helped time go on - couldn’t listen to music after all!
About 30 mins in ENT, I was called in by the doctor and we discussed my condition. He did a few tests including one that involved me blowing out my cheeks, scrunching my eyes and showing my teeth. No abnormalities with my facial nerve (which I’ve since found links to you ears), signs pointed to SSHL. He did say they weren’t entirely sure what was causing this but did explain this can happen and in cases like mine, the outcomes could be:
- Hearing recovery can be partial, full or not at all. It can also happen that people who have SSHL suddenly just get their full hearing back - In my case it was too early to tell
- In some extreme cases, a brain tumor can also be the cause, but in such cases it’s normally benign. Again, too early to tell vs. normal initial treatment for SSHL
I confirmed I had no other health symptoms, issues or problems, felt fully fit other than this, only had a shellfish allergy (no others), and counted myself lucky health wise given I hadn’t needed the NHS in so many years.
As an end result, I went back to the waiting room for a bit and he came back to say he was prescribing me a steroid (Prednisolone - 60mg daily each morning with food) for 7 days plus something for my stomach to help with acid as this can be an issue. Having read online about this, the steroid was and seems to be the only main thing that can help here medicine tablet wise, but I had also read online that others had been given 2 weeks. So I asked about this and he mentioned if I didn’t see improvement within 5-7 days, further medication wouldn’t help. Honest and had to be said but also another scary thing for me as this was day 3 for me now and I was still 100% deaf in my left ear. No medication though for those 3 days. I got my prescription and went home.
I nearly talked myself out of going to A&E on Sun that morning, but having read the accounts above on this website, I am so grateful I did, and that Sun night I felt my first sign of relief as I now knew I had done everything possible to seek help. I couldn’t look back on this with regret, despite whatever outcome I’d end up with as nothing further could have been done. On getting home I took my first batch of ‘meds’ and hoped for the best despite not knowing what might happen.
I told my family that evening on WhatsApp - I live alone and they live elsewhere in the UK and while they needed to know, I am also the type of person to deal with things on my own. I know many others who don’t work this way but for me, I find I’m stronger at maintaining my composure and clarity on what I need to do next if I work through things on my own terms without a constant reminder or even a ‘good luck’ from someone else as it’s still a reminder. My family throughout this have been very supportive, but have also respected my need to get through the initial uncertainty in my own way.
Monday, and my first glimmer of hope! Magic, I heard my first noise in my left! The smallest of sounds and only for a split second but it was there - like the sound the pin needle makes on an old school vinyl record player when it first touches the record. I’d made it through a few days of absolutely nothing and on hearing this I broke down into tears. The whole experience I’d gone through so far all hitting me at once. So much further to go and so much uncertainty ahead but hearing anything meant the world to me.
Again, I never do ‘blogs’ but I did start writing one in my phone and as the week went on, and as I noticed anything quirky, or read something insightful online, I made a note of it.
Oh, I didn’t mention but before my Sun ENT visit I found this youtube video (hearing test) that plays a range of frequencies. Trying to cover up my right ear fully and only listening through my left, I thought I had been picking up sound at around 600Hz to 5,000Hz. The ENT doc had said frequency hearing checks like this weren’t useful as it was decibels they needed. I still had thought the check was useful but found out on the Monday that this online freq. hearing test thing was actually useless. Despite every attempt to cover my right ear, it was actually my right ear that was picking up the 600Hz to 5k from the earphone in my left.
I did however come up with my own ‘test’, the ‘Sigrid’ test. Pretty unscientific but discovered by accident and also mildly amusing to me at least. Despite this, it was actually something I could use to get a gauge of any improvement. Still obsessing on this whole thing, it came to mind, what if I woke up and my right ear had gone deaf too. What if I could never listen to any of my favourite music ever again, amongst all the other things I’d also obsessed about including job prospects (I have worked my way up career wise in the same company for 12 years), what would this mean for other aspects of my life, my friends and family. Scary but that’s me, outside of this I’ve always been one to think too much on a lot of things.
So, I put on one of my recent favourites on the speakerphone on my phone - ‘Strangers’ by the artist ‘Sigrid’. It was on speakerphone as I couldn’t set my earphones to ‘mono’ and I didn’t want to miss anything that would only play out of the left side. Low and behold though, as the chorus came up on the song, I ‘heard’ cracking/that pin on the vinyl sound from my left, and in rhythm with the music. Amazing! More hope, and finally something I could use to reliably check my left ear. I will say that at this stage, you couldn’t call anything in my left music - not even close and no pitch or ‘musicness’ to it. I did however end up playing that song quite a few times that day.
A sidenote, thinking of what the ENT doc had said, I ordered a DBa sound detector online (amazon) pretty cheap and looked into Prednisolone and what would help its effectiveness. I also looked at dietary things that took into account SSHL treatment.
In general the below is what I found out/did to maximise my chances of hearing recovery:
- Stopped drinking coffee - No caffeine in diet as this can interfere with steroid absorption.
- Prednisolone is most ‘active’ around 2-4 hours after taking it - but this can be shorter in those who hydrate a lot. So I tried to work to 1-2 pints of water before 12pm as I usually drink a lot more water during the day.
- Given the above too, as it can take your body ~1-2 hours from waking for your metabolism to ‘kick in’, I started taking my meds at least 1 hour later than when I woke up just in case it made a difference.
- Foods like genuine dark chocolate, strawberries and pecans (amongst others) are amongst the most effective anti-oxidants - On most days that first week I ate a lot of these even though I’m not a fan of chocolate (I have a savoury tooth). Fish like Salmon and Tuna are also great for vitamins. For Iron, maybe not the most healthy of options, steak too each most days.
- On starting Prednisolone, it also seems to only start having an effect (if any) usually within 2-4 days on starting the course so wait for it to do its job (assuming again it can help).
- Made sure I didn’t take any paracetamol, ibuprofen or any multivitamins. Coincidentally I badly hurt my back (nearly broke a rib but did damage the muscle ligament) a month earlier and so had been taking a lot of painkillers/ibuprofen - All within recommended over the counter amounts and I did mention this to the doc who dismissed that too as a cause here. I stopped these anyway (practically healed now) and as for the multivitamins, my change in diet for natural and more effective ways of getting this meant I didn’t need those here as I’d only take them now and again anyway.
Tuesday - I couldn’t wait to try the Sigrid test again. Almost counting the hours since the night before. I’ll note that normally I get up around 7am but for this whole week (and since then really now) I tend to be getting up naturally around 5-6am though some mornings earlier. I do find myself feeling tired earlier than usual too here though, around 10pm rather than later than this in the past.
So, up at 6am, I tried the Sigrid test. No real difference to the day before but I was hopeful. Around 7 I then too took my meds.
Now something I did start to find (which I think is a side effect to the meds) was both a very loud and continuous tinnitus along with a strong numbing effect across the whole left side of my head internally. I could feel my head with my hand and the sensation outside so this was all internal, but very distracting and quite hard to concentrate when I wasn’t focused on something specific (i.e. my work). Could be psychological but I also did feel this effect more during that 2-4 hour window after taking the meds. While it did continue for every waking moment of the day, it did seem to be most potent during those hours, and later in the week I had the added worry of ‘what if this feeling is permanent after the course of meds had finished’. That lingered on my mind for the rest of the week but I’m happy to say that’s gone now since I finished my prescription. Some mild tinnitus still though…
Later that Tuesday my dba sound analyser arrived and I found I could hear the pin sound of the Sigrid test at about 68dba, and only on the highest frequency parts of the sound (chorus). no real difference later that day though vs. the morning, and it made me pause. I did however note this and told myself to remain hopeful as the meds still needed a day or so to really start working in any capacity.
Wednesday, still around 68dba when checked, but I did start noticing that when sound was on the TV, or even things like turning the kitchen tap on that I was starting to feel some discomfort in my left ear as though pressure was being put on it. Yes, this could point to something called Barotrauma but not in my case. I put this down to my ear starting to recover in some way and put up with it as it was only mild discomfort and the head numbness etc. was still far more prevalent.
Later that night (~10pm) I tried turning down the sound on my phone during the Sigrid test, and actually found I could start hearing at around 50dba in places, still not real ‘music’ heard and only at the higher freq. parts but encouraging…
Thursday was my first real breakthrough day. 4-5 days into the medication. I had a work telco ~1pm and I had my earphones plugged in (both ears) connected to my phone, and it was amazing, with then just my left ear plugged in I could make out one of my Canadian friend’s/colleague’s voice, and understand what he was saying! He speaks very clearly and the sound quality was great (fairly loud as a result) but truly something to behold that I could make him out. For a few others on the call I did make out the usual ‘pin on vinyl’ sound during parts but nothing clearly like a voice. Finally, some progress after such a long week thus far! More hope and I was in a great mood for the rest of the day. As I had been telling myself all week, even if I only get back some of my hearing, I now knew that even if I had no more improvement here, a hearing aid was an option which hadn’t been the case before this.
Friday onwards to today (Tuesday) - My hearing has continued to improve with each day and I’ve nearly got back full restoration on my left. I can hear music clearly in my left, albeit ever so slightly tinny at some moments though I don’t notice it when i’m not thinking about it. Volume seems to be the main thing right now, where I still notice an imbalance of it being quieter on my left but the full range seems to be apparently there.
Quick comment on my medication, on Friday (6 days after starting it) I did go back to A&E to see about a repeat prescription as Sat was my last day. The GP had a call with ENT and they said I didn’t need any more meds here beyond finishing up what I had. It wasn’t the outcome I was hoping for given the progress I had been making, but days later I have still seen improvements day on day. I didn’t verbally disagree with the doctor at the time about this but did disagree in my own opinion/mindset as I really did want an extension. Glad I was wrong here as the side effects especially with this steroid do have a greater impact the longer you take them, with 2 weeks max being the timeframe where it’s much easier for your body to adjust to not being on them anymore (it can mess with your body/brain’s ability to naturally create around 5mg of a similar enzyme and taking 60mg daily as I was clearly is quite a lot more).
At the weekend I did look up hearing aids with amazon and other general articles to learn how they worked etc. and yes, hearing aids are very expensive from what I’ve found out as they’re highly specialised to the user. This is also due to them being able to work our sounds from each other and send you the important ones like people speaking vs. everything else.
Hearing amplifiers however, which aren’t hearing aids but essentially amplify all sound can help here, so I thought i’d try it out. I ordered one (~£35) that’s rechargeable and it’s actually pretty good here. Quite small but fits easily in place around your ear and I’ve used it on/off the last couple of days on its lowest setting which seems to even things out with my right hearing. I didn’t seek any medical advice here but imagine that it’s one of those to only use on a lower setting as it can and probably would damage your hearing if on higher settings. The amplification can be quite loud when a sudden sound happens (e.g. turning on kitchen tap). Seems to be helping me here though I don’t plan on using this long term. Perhaps just this week as I’ve now reached a stage where I can manage without it.
So this is my very long story of my experience so far, and my first proper hearing test at the hospital is this afternoon so i’m going to see how it goes from here. I did however want to share this, even if no one ends of reading all of it.
No matter who you are, I know how terrifying having this happen to you can be. All the emotions, ups and downs, the what ifs, pondering, and waiting to just see if things get better. If you’ve not had this before, it’s not something you can prepare for before it happens, but I know the difference it made to me in reading other’s stories, and the strength it helped give me. I want to pass that on in kind through my (rather long winded) experience.
I’ll finish here to say while every situation is different, with different outcomes, and that my situation may differ to yours, taking the approach of remaining hopeful and positive throughout no matter what during this ordeal, and incorporating the scientific (somewhat) / dietary / daily routine elements in conjunction here seems to have worked for me. Don’t give up, and keep trying every angle you can no matter how crazy it might be. Sigrid and all!
p.s. As a non active blogger I don’t plan on updating further on my progress but i’ll try to keep an eye here just in case anyone has any questions (if any) that I can help with here