Sudden hearing loss - my experience SSHL

Hearing Loss
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I’m writing this so that it might be helpful for anyone who has this experience.
First of all this condition is properly called Sudden Sensorineural Hearing Loss (SSHL).
It should be treated as a medical emergency - the equivalent of losing the vision in one eye suddenly (and usually without obvious cause.).

My Experience:
About five years ago I awoke on Thanksgiving day with no hearing in my left ear. I could not even perceive a dial tone from a regular phone - at all.
I went into my Internal Medicine doctor’s office on Friday. The ENT clinic was closed but my doctor did a phone consult with the ENT on call. She started me on high dose oral steroids.
On Monday I had no improvement and I was in the ENT clinic as they opened.The doctor saw me and I had a hearing test. I could perceive no words, at all!(I’ll look for my test to post results, and edit this).
Over the weekend, my wife and I had searched the internet for information. One of the things we saw was a multi-location study, treating SSHL by employing (on the experimental side) the use of steroids injected through the ear drum. The purpose of the study was to look at alternate treatments for SSHL - particularly for those who are at risk or cannot tolerate oral steroids.
Those who were randomly assigned to the standard treatment regime were given oral steroids.

I requested that the doctor look at the study and give me the injected steroid treatment. While trained in Cleveland or Cincinnati, he was not familiar with this mode of treatment. He said he would consider it. Meantime I considered going to one of the study sights to enroll - problem being that I could be put in the standard treatment group. I also spoke to the administrators at two of the study sites where I thought I could go and pass the time between treatments.
The ENT doctor also ordered an MRI - to ensure that I did not have a tumor compromising my auditory nerve or inner ear - none was found.

The ENT doctor notified me that he had spoken with those doing the study and was willing to treat me with the injected steroids.So, I returned to the ENT clinic on Thursday (one week after onset) and received my first treatment. (Note: I had completed the five day course of oral steroids) By the following Sunday following I was experiencing the return of some of my hearing in that ear - altho’ distorted.
We attended a concert and I had to wear an ear plug in that ear… also in the grocery store in ‘beep!’ of the scanner was loud and distorted - disturbing.
What followed was four additional treatments - two per week for two more weeks. At the end of the treatment my hearing was retested and my left ear tested about where my right ear had tested.

Subsequently, I heard that the study was suspended because the injected steroids were so much more effective than oral steroids that it was not considered ethical to continue with the ‘standard’ oral steroid treatment.

Now five years + later, the tinnitus in my left ear is somewhat worse than my right and my upper range hearing is slightly worse than my right (annoying, tho).

miscellaneous details:
I believe that my SSHL was probably due to a virus - about 30 days earlier I had an episode of the type of dizziness/associated nausea that is associated with inner ear problems. It went away (then) over night and I sought no treatment.

The steroid that I received was only available from one provider in my small area and had a preservative in it that I don’t think was in the steroid used in the study. I had about one hour of fairly intense pain after treatment as the steroid dripped down my eustachian tube. Ice packs and over the counter pain killers were a sufficient treatment.

SSHL happens across the population and is no more present in any specific population by age, gender, etc.

My doctor uses injected steroids (with patient consent) as his standard treatment for SSHL

Most GP’s and Internists may encounter one or two cases of SSHL in the course of many decades of practising medicine.

While ‘sudden’ hearing loss can be plugged ears, plugged eustachian tubes, etc, actual SSHL requires rapid treatment. Going on an antibiotic, waiting three weeks for an ENT clinic appointment etc is a prescription for permanent hearing loss.

1 Like
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You are fortunate compared to me. I had Meniere’s diagnosed but wasn’t advised to seek immediate help. The attacks were quite severe but stopped after a few months. It really affected my word recognition. Aids help but it isn’t like good hearing. I am glad you found information and a doctor that could help.

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You were lucky in that you took an active approach in getting what you needed to give you the best shot at regaining your hearing. Unfortunately, many doctors don’t consider sudden hearing loss an emergency and give the patient decongestants, oral steroids, etc. and send the patient home. By the time they go to an ENT or are referred to an ENT the damage is done. I have a couple friends who basically lost their hearing in one ear because their doctor didn’t take their sudden hearing loss seriously.

4

This happened to me two years ago…woke up with raging tinnitus and no hearing in my left ear. Not one doctor I called would see me or even suggested I go to the ER. On the third day, a Monday, I went to urgent care, where the doctor had experienced the same thing. He put me on high dose of prednisone for about 10 days. Hearing returned but was completely synthetic and artificial hearing. Two additional episodes and then an extreme Meniere’s experience. Lost 60% hearing and claritiy in left ear, had three courses of steroid injections into eardrum and hearing loss seemed to stop at that point.

The many doctors I saw, especially the ENTs, were casual and unworried by my plight. I brought them research, but only when I got uveitis–in addition to episcleritis, did anyone show concern. I guess going blind is worse to them than going dear. My ophthalmologic freaked out (because it was in both eyes, not just one) and only the rheumatologist ran tests and diagnosed me with Cogan’s syndrome (autoimmune vasulitis that attacks ears and eyes). I’m now on methotrexate, which has kept my eyes and ear stable.

I still get Meniere’s attacks and worry about further hearing loss and attacks on my other ear.

I got hearing aids last month (rexton trax 42) and have somewhat improved clarity in left ear (unaided right ear gets 24/25 words/left ear w aid-12/25, but extremely distorted.

I urge anyone who experiences sudden hearing loss, one- or two-sided, to rush to urgent or emergency care and insist on oral steroids. Follow through carefully with any and all doctors and do not allow yourself to become dear, perhaps unnecessarily, because the doctors are ignorant of and complacent about this condition.
Robin

5

I have central serous chorioretinopathy in both eyes which can lead to blurred vision and/or detached retina. Things that aggravate this condition is stress, caffeine, and steroids, so in my case I want my retina specialist by in before taking any steroids. I rather lose my hearing than my site.

6

My story of SSNHL:
One early morning I woke up with severe vomiting and dizziness. The dizziness was such that going to the attached bathroom was also an issue. Also felt that my left ear was ‘blocked’. Initially, went to a general medicine doctor, since at that point of time, vomiting and dehydration was the main concern. When I told the doctor about my ear block, he did not take it seriously and just tested my outer ear and said everything was fine. At this point of time, he did not ask me whether I was able to hear in my left ear. And, I too was not aware that a person with no history of ear infection, could suddenly go deaf in one ear.

After 2 days when the vomiting and dizziness came under control and I made my first phone call (after 2 days) with my left ear, I realised that I cannot hear anything. Then we rushed to an ENT who was quite useless. By the time I went to the ENT OPD of a good hospital, it was 5 days. The doctor there was good and immediately gave steroid injection directly to my ear and put me on a 10 day oral course. There was slight recovery esp. in the initial days of the steroid treatment. This was a case of sudden senso-neural hearing loss, the cause of which is yet unknown.
Today after 4 months, my left ear has profound-severe loss, with some tinnitus.

Shared my story for the benefit of all who are not aware of such sudden problems coming out of the blue, which should be treated as medical emergencies requiring
attention within 48 hrs. Also that the ear does a lot more than hearing, esp. on maintaining balance of the body.

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this is a good read. not to take away from this but how does inflammation or fluid build up kill our hearing?

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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! :slight_smile:

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

9

Hi,
Further good news since my above post.

Results from my hearing test showed that freq.wise that my left ear was more or less in the same range as my fully working right. Some freq. ranges better on my left which is promising.50 min wait time in the waiting room (mentioned for others expectations here) beyond my agreed and scheduled appointment with the ENT NHS ward I had been assigned for this.
Quite odd (for me at least as I’ve never had one before) hearing test, where they play a range of frequency sounds with conflicting sounds in cases with headphones on in a soundproof room just to work out what you can hear. The doctor who did this test didn’t give me any answer on my results/outcome and I was asked to go back to the waiting room.

A few minutes later I was called and met with a doctor. She gave me my results that were promising and that they’d want to see me in about 4-6 weeks. I’ll get a letter from the NHS about this on the app’t though great news that my results showed an almost full restoration of hearing function on my left. Left stronger freq. wise in some cases which was great for me. Very encouraged and confident in the doctor I spoke with too, she knew what she was talking about and knew the content.

Overall, very happy here though I have one regret with the visit but it’s not related to my prognosis. It’s more from the scientific perspective given my sad focus on numbers which to doctors probably seems most people don’t look for. Despite the really positive outcome of the visit, I came out asking myself, ‘why didn’t I ask about the specifics on freq. ranges, numbers etc?’. I didn’t ask these things, and in the moment I asked questions like ‘is there anything else I can be doing here to improve things?’ (answer was no) but I didn’t then ask the follow up ones around my ‘EXACT’ number based results.

Just me i’m guessing here, I work with and like exact numbers when they exist. Main regret now with this test. Everything else was perfect.

It makes me sad to consider this whole situation from start to finish, and what the human mind may switch to/from in terms of their priorities. Losing my hearing at the start for many days was the end of my world as it was (so scary and something I’ll never forget), but going through (at least my own experiences) this, my interim focus was around trying scientific analysis to understand it (perhaps my way of coping with the situation), through to what I feel I’ve written now that is so benign it almost doesn’t warrant mentioning (my need for numbers from my hearing test).

I often think I think far too much. It’s probably why my first post was a marathon to read. I write this though in the hope that someone who may be in this position with the same recovery situation (could even be less) can have hope that they’re not crazy for what goes through their head at the time.

As I learned from this situation, nothing is usually the same but hearing from others can both give you hope, but also give you insight and information from real people that those (lol) hearing aid/amplifier companies want to explain to you which from them I found useless and just ‘corporate’ speak. It took my some time here to finally find a forum with real people vs. all the google sites with corporate sites that explained the problem about hearing loss and how they could help with hearing aids etc. rather than just real people like here.

Final note, I won’t pretend that I know that even this website will try and promote some type of apparatus of a hearing aid etc. I haven’t looked nor do I care as it was the messages that people had said in this larger forum which gave me hope. I don’t advocate anything on this site nor do I support whatever they do. I’m a good person so I may be committing some kind of sin if this is a charity site etc, but having not looked, I care in passing it forward, and hopefully in reading my story (hosted courtesy of this site tho!) it will give you hope.

I don’t know why I woke up one morning and was suddenly deaf in my left leaf. Truly it became the most terrifying experience of my life (at 33 years old-fit health) but with a lot of research into this and an even greater sense of hope (and support from my family), and the medication early, I seem to be one of the lucky ones who have got ~95% of their hearing back at this time.

I also don’t know your situation, but have hope and read my last post. May be long but may give you some ideas or focus items that might lead to some or all improvement if you also suddenly have this happen to you suddenly. Finally, and first of all, as I mentioned at the start, if you suddenly lost your hearing, seek emergency (eg. NHS A&E emergency services) treatment immediately! Waiting beyond 48-72 hours after losing your hearing immediately will drastically reduce your chances of getting your hearing back fully.

I don’t have all the answers, but my experience and writings covers more than I’ve seen in what I could find from a forum point of view and I wish you the best of luck in what may have happened to you should you come across this for that reason.

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Hi,
Thanks for sharing your story. It helped me with informing myself better with SSHL.
SSHL happened to me last Saturday evening, and I started the medicine on Wednesday morning (Prednisone 60 mg for 4 days, then reduce by 10 mg every 2 days for 2 weeks). You mentioned the 48-72 hrs period and well unfortunately I could not started it inside that time frame, and the worst thing is I could have because I received the medicine Tuesday evening but the pharmacist recommended me to start it the next day in the morning as it might cause insomnia. Based on the info I read before I thought it would be ok, since what I read mentioned that if the steroid medicine is started before 2 weeks it should be ok. Well, today is my 4th day on the medicine at 60 mg, and I have to start reducing the dose tomorrow at 50 mg for 2 days and then 40 mg for 2 days, etc. I “think” my hearing is a little bit better but I cannot tell for sure. Some questions I have, after the 48-72 hrs period for starting the medicine how much do you think my chances of recovery are reduced? Also, would you recommend trying to stay at 60 mg dose for longer than 4 days? maybe this would help, specially since I do not think I have noticed clear improvement now in my 4th day of medication. Just for reference, my hearing loss was not full, I was still able to hear some sounds, very little but still I could hear. Speech recognition was bad, I could not really recognize what words were being said with my left ear, I could guess somewhat, but not really recognize the words properly. At the moment, I think my hearing capacity is the same. I would really appreciate if you could answer, or if you have any advice. Thanks.
Alex

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Hi Alex,
I’m very sorry that I’ve not seen your post before now. Apart from this, i’ve never posted on anything so don’t check these things but something came up that made me think back on this as a defining moment of my life.

I genuinely really hope you’ve seen (or heard really) improvement since you posted this and again i’m very sorry for not coming back to you sooner as I know how difficult this experience is and how alone you may have felt when you posted here.

To your comments/questions, my own non-professional personal thoughts/comments:

  • Not diagnosed, but for many years I count myself as having mild insomnia. For around 15 years or more now I only seem to sleep about 4-5 hours every night and recently it seems to be around 2-4. I function just fine and even on those nights when I rarely get more, I still wake up every 3-4 hours or so.
  • While I envy those who sleep more, my personal opinion given what happened to me, in my case I would have started my course on the same day (as I did on the docs advice - no mention to my knowledge of the side effect of insomnia though) if insomnia is the only reason not to do so. Not sleeping much can be irritating but I’ve become so used to it that maybe I downplay how it may affect others though. I trust implicitly the care I got from my ENT doctors.
    That said for you as I think about this, only a few hours delay to taking the Meds shouldn’t make much of a difference if any. What’s important is that you sought proper medical help on this and didn’t wait too long from the sounds of it. If I hadn’t of broken the mould (in my case) and sought professional advice, I think for me that would have been the biggest regret of my life. Better to check than have that on one’s thoughts.
    That dosage is pretty intense and from what I read back then, it only seemed to be in the US where their docs would prescribe 60mg for a full 2 weeks. 1 week for me, and for you a staggered but reduced dosage over time over a 2 week period that seems sensible to me. I’m glad I only had 1 week on that full dosage and I dread to think of the further sideeffects I would have had if I was on the full 60mg for 2 weeks. May work for some and my guess for you is that your doc realised this and put you on the ramped down dosage to minimise the side effects and any withdrawl effects.
    In my case it wasn’t the insomnia that hit me (maybe I didn’t notice the lack of sleep as I was very worried about both the hearing loss, and the terror of it all). For me, the effects while on those Meds was mainly presented in the form of a cloudiness in terms of my thinking processes. The tinnitus was annoying but it was my clearness of thinking that bothered me more. Kind of felt like I had this fog over all of it and while I could still operate and do things, i’m used to thinking about steps 1-4 of something when only step 1 is in front of me and couldn’t for that time when I was on the 60mg dosage.
  • Without knowing, my biggest fear at the time was that i’d wake up one day and find I couldn’t hear in my other ear and what that would mean. That’s how I came across the somewhat comical (probably my way of dealing with it all) Sigrid test.
  • For your experience and based on my own, don’t expect an immediate improvement when starting the Meds. It took me quite some time before I really saw improvement despite wanting and expecting an immediate result. I know everyone is different, but for me it took several weeks before I saw a decent improvement and I consider myself lucky because I did research other cases of this.
  • For your comment on not knowing if you can tell if there’s improvement, I couldn’t find any home test that could scientifically show this. I tried several things but found music (earphones, not on speakerphone etc.) to be my best way of measuring mentally my progress.
    I didn’t mention before but I did have that follow up formal hearing test again at the hospital a couple of months after all of this for me, and my results came out at 100%. I have perfect hearing in both ears now, and yes, I asked for my results (and the numbers etc.) which my doc took me through vs. other norms.
    It’s not scientific, but I recommend my Sigrid test (song-Strangers) with earphones (not any other medium) on a high-ish volume. Do consider the volume though as you don’t want to cause any other damage that can happen on very loud settings. That song etc. may not be your scene and there’s bound to be others but that song has some pretty high pitch sounds in its chorus points and it was those sounds that I heard first to my amazement and joy back then. I listened to it every day during my issue (still do today but only for enjoyment) and back then I mentally measured my progress as I seemed to hear more and more each day. Again, not scientific, but find a song that has some higher pitch/vocal or maybe bass moments too and try that as your benchmark on whether things seem to be getting better each day. Worked for me.
  • On the point around the 48-72 hours aspect. Truth is, I don’t know how much of an impact is has if one misses that. I was on the very cusp of the 72 hours end myself and I had full recovery. Everyone’s body chemistry is different and we all react differently to Meds etc., but I have the 72 hour threshold in mind after reading into the condition and reading other’s posts that I came across when I researched this quite a fair amount. Not to say there’s things I didn’t come across though. The info out there is very difficult to find and a lot of websites just want to see you a hearing aid so I had to sift through that but it seemed like within 72 hours to me had the most impact on those who recovered the most of their hearing over time. The difficulty in finding info here is a big reason why I wrote my post here to give a real person’s view on this issue.
  • Would I recommend staying at a higher dose for more than the 4 days. Based on my experience if it were me, I would listen to my ENT (ear nose throat) doctor’s instructions. After my prescription in my case, I didn’t want that to stop and I feared that running out of meds would stop the improvements i’d experienced. I was wrong and gladly so. I think the meds help spur on an improvement but this one in particular actually hurts you if you take it for too long as it messes with your body chemistry quite substantially if taken for too long. I’m very glad that they said no to any more Meds and my cloudiness of thought also went away days after stopping it. My hearing continued to improve (but it took around 2 months or so for full recovery) so at least for me, if my doc (not GP in my case here, but a specialist who actually knows about these things) told me to take a certain amount, then i’d follow their instructions despite any fears or concerns I may have on not improving. For me, they knew what they were doing and were right not to extend my medication. I sought a second opinion in my case (proper ENT doctor vs. a walk in centre doc-walk in docs may be good for many common things but not this issue in my opinion) and I got the correct treatment for this extreme condition.
  • Despite 60mg being pretty extreme for this problem, it took me several days before I heard even the slightest (very-remote) sound. I believe for me that increasing my medication to a higher than prescribed amount wouldn’t have changed that. Just because one takes a pill (or 13 a day for me back then!), it doesn’t mean one will get an immediate result - be patient and remain hopeful for some or all of your hearing to return.

Alex, I know I’ve tried to be somewhat diplomatic here but I hope I’ve been able to answer your questions as best as I can. Above this all, my most prevalent and emotional thought here is that you got your hearing back. My experience was probably the most terrifying one of my entire life to this very day and I’ve had some pretty terrible things happen to me before, but no one expects this type of thing to ever happen to them.

We all take something as simple as our hearing for granted, but it’s really substantial when all of a sudden it’s gone, or reduced suddenly. I won’t pretend to be an avid watcher of blogs still but you’ve inspired me by posting here, and all i’d ask if that you let me know here how you got on since posting your message. Maybe this forum will help others too where so many other websites didn’t for me back in the day.

Hope to hear about you in due course :slight_smile:
Jan

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Jan, if you still around by any chance, your post has given me so much hope. Have completed 10 days x40 mg, also wanted to continue as gone from nothing, to crackles to distorted slight hearing.

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I actually am new to this forum and new to sudden sensorinerual hearing loss. I was diagnosed with this yesterday in both ears,which I was told is uncommon, along with tinnitus. I was started on high dose prednisone (which I have had in the past for respiratory issues) and if I have no improvement I will be getting steriod injections in my eardrums…
The injections I really know little about so I would appreciate anyone’s feedback
Do they hurt?
Can I drive myself to and from the appointments?
Are there any side effects? If so, how long due the side effects last?
Tx u

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You still need rapid intervention 24 hours. If you do not improve, you will lose your hearing forever within 3 days of the injury and you will have to have a cochlear implant. Tell me what’s new … have you improved?

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One late evening I had feeling as though my hearing was getting blocked in the right ear. I thought nothing of it and went to sleep. Next morning I was able to hear almost nothing in it unless someone talked loudly to me. I went to the doctor, he did hearing loss tests and was surprised that I had lost 70 to 75% percent of my hearing in a matter of 8 to 9 hours. He didn’t tell me what was wrong with me but prescribed Prednisolone and vitamins.
When I checked about my symtoms and his prescibed meds on internet then I came to know I had Sudden Deafness.
First four or five days after taking meds it didn’t help. Now I even had a little ringing in my ear.
At the same time, I was searching more about it on the web. Then I found an article that said some doctors were experimenting on patients by exposing them to music in the affected ear, instead of protecting it from noise.
So along with taking Prednisolone, I listened to music for 15 mins twice in a day from my right ear ( Just the affected ear). At first, all I heard was gurgulling sounds, couldn’t even tell if it was male or female voice. Slowly after four or five more days I began to see a difference in my hearing. By 15th or 16th day I could hear somewhat normally. After 2 or 3 more days I stopped taking Prednisolone. My hearing was 90% back, but I was still suffering from mild tinitus. (Total amount of days from the first day I lost my hearing had been 18 days approx).

For the problem of Tinitus, I did some yoga like Bhramari Pranayam (Watch Youtube). It took me a year or so, but this problem too solved itself by 90%.
Now 3 years plus, my hearing is Fully back and tinnitus is gone.

You Too Can Recover. I have written my experience down, so people might get some Hope. Please go see a doctor as soon as possible when you feel your hearing has gone down abnormaly low in a VERY short time. I went to the doctor the very next morning. I Hope everyone who is reading this recovers fully as I have.

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Even before I experienced SSNHL myself (three times!), I treated it as an emergency with all my patients as a primary care physician. I’ve only had several patients over the past 20 years with this.
Once the exam is fine and nothing else otherwise to consider (ie stroke, etc), I immediately prescribe prednisone and make an urgent referral to our ENT for the following day or two. They treat the condition urgently as well so it is never hard to get people worked in. They usually are the ones to order the MRI of the brain and IAC.
There is a expert opinion consensus statement that one could reference if needed in order to receive treatment more rapidly (see the link below). The data is a real mish mash of evidence and will lead to a variety of treatment plans by individual health care providers. Despite success stories, the recovery rate is not promising. I recall articles showing 30-65% if treated early. It’s not as promising as I’d like to see.
I never bothered with transtympanic injections or HBOT the first two times as the loss was small, but this time it resulted in severe loss. Hence I did have two TM injections and HBOT. My ENT wasn’t a fan of HBOT, but based on the guidelines I requested the treatment and he was eager to oblige and write the order. HBOT is cumbersome and potentially expensive if you don’t have Medicare, but there are independent centers in the USA and their cost can be vastly more reasonable, about $175-200 per session.
My high frequencies are improved, but no success in the lows despite initiating all treatments within 2 wks. YMMV and its worth a shot if you can catch it early and your loss is severe.

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Just seeing the post asking about pain/discomfort with the steroid injection through the ear drum into the inner ear. In my ENT’s office they used a fluid in my ear and, I think, electrical stimulation that numbed my ear drum. I had no pain with the injection, maybe some sense of “fullness” with the injection. As I said at the start of this thread, I had a fair amount of pain as the fluid drained down my Eustachian tubes and I believe this was because the steroid had a preservative. However, the pain was helped with cold packs on the side of my face and lasted no more than one hour. Could I have driven home? - maybe not, since I needed to hold the cold pack tight to my face. In a pinch yes I could have driven home - and I certainly could have driven home, if I had waited, experienced the discomfort, and then gone home. No question that if SSNHL happened again that I would go for injection as my preferred treatment.

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You are one lucky person. I had a SSHL in my R ear 5 years ago. Every visit to my audiologist I told him I couldn’t hear with my R ear. He just ignored me totally. So I changed AuD’s with in the same clinic. I told her the same thing. She also didn’t listen to me, so I thumped her desk, raised my voice and said “will you listen to me, I can’t hear with my R ear” She did an audiogram and found I had had a huge drop in my R ear. She sent me off to an ENT, but all he said was you now have symmetrical hearing loss in both ears. Leaving me with profound hearing loss in both ears. I tried new aids which we’re supposed to be more powerful but they didn’t help at all. I tried for 18 months with those aids, 18 months of frustration, isolation, not being able to communicate very well. Not being able to talk on the landline, then yo top it all off I was told if I can’t use a land line I would have to resign from work. It was then that I knew I had to move forward and get assessed for a CI. The best thing I ever did, and absolutely no regrets.