Update:
It has been just over 15 months since I was diagnosed with sudden sensorineural hearing loss (SSHL). I was overwhelmed by the response to my initial blog post back in July 2014, thank you to everyone who has written to me and continues to do so, your messages have helped me to draw strength and have prompted me to write this update post which details what’s happened since.
Balance:
A couple of months after the loss I underwent balance testing in hospital which involved wearing a head set and watching red dots moving around on a wall, having water of different temperatures poured in my ears and being dropped backwards suddenly among other things. It all lasted about 2 or 3 hours and was quite strange but never painful. The results proved that my balance was affected by the hearing loss, no surprise there! But it did lead to the following treatment.
Treatment:
I was given a series of VRT (Vestibular Rehabilitation Techniques) exercises to do called Cawthorne-Cooksey exercises. I did these for about six months every day. They involved spinning my head with my eyes open and closed in different ways, basically to help re-train my brain which way up and down should be. Doing this did help and today my balance is much better, although its still far from where it was. I find that if I’ve been on the computer or lay horizontally, say on the sofa for too long, my balance goes squiffy sometimes for the rest of the day. My eyesight has also been affected to a degree. I find it hard to focus, especially when I’m tired and in the same way that my balance feels out of kilter so does my vision, no explanation has yet been given for this and eye tests show that my eyes are fine so it must be my brain.
Hearing:
Unfortunately there was no significant improvement following the steroid injections I had as part of my initial treatment. I was told it was 50:50 if it would make a difference. However, this treatment did help to recover a degree of my hearing which made me a candidate for a custom built digital hearing aid.
Treatment:
I initially went for a fitting of the hearing aid where a plasticine type material was inserted into my ear to take a mould. The day I went up to collect the hearing aid I really wasn’t expecting much, but when they turned it on I couldn’t believe the difference it made. The audiologist walked out of the room and down the corridor and said something to me and I could hear her! It was incredible and the best thing is that it reduces the ringing from the tinnitus dramatically when its turned on. The batteries last around 10 days and I wear it every day. I still can’t make out what people are saying all the time if they are on my right side, especially if there’s background noise, but it does generally help me to hear conversations when used in conjunction with my good ear. The hearing aid has 4 settings:
1. For when I’m talking to people head on
2. For more 3D situations (events etc.) this is what I have it on 90% of the time
3. Loop (which I have yet to find working in a public space!)
4. For when I’m playing guitar or listening to music. There is a compressor to allow for the louder sounds
Tinnitus:
The tinnitus is still there but with the hearing aid and lifestyle choices it is dramatically reduced. I believe that my brain is also getting used to it and starting to tune it out in most situations. Sometimes I forget I have it for days on end, which I never thought possible and it doesn’t control my thoughts and therefore my life, like it did at the start.
Treatment:
I met a tinnitus expert who gave me lots of great advice. He suggested that I cut out caffeine, which I did completely to begin with for several months and then I started introducing the odd coffee (because if you’re like me coffee is a passion!). Now I drink mainly Red Bush tea and decaffeinated coffee with the odd real coffee, I have found that by reducing my caffeine intake the tinnitus, and general relaxation, is improved. The specialist also recommended taking some Ginkgo Biloba, Vitamin B12, Zinc, 5HTP and beetroot juice. (I don’t recommend taking any of these tablets without talking to a doctor first because some can have side effects). I took the concoction for a couple of months and it did seem to reduce the tinnitus, however I’ve never been one for taking tablets and so I stopped this gradually. The beetroot juice seemed to help the most, and it was tasty but you need a quality one like ‘Beet It’ organic juice and you only need a small amount each day, like a shot glass or so.
Depression:
Around December last year I had a real crash, it was at the six month point since the loss. Looking back I think this was part 4 of the grieving process for losing my hearing (1. Denial, 2. Bargaining, 3. Anger, 4. Depression, 5. Acceptance). I was away for a weeks writing break in Wales and it was the first time I had a chance to reflect on what had happened. My entire body seized up, I had terrible pains behind my right eye and I nearly collapsed a couple of times. I was convinced that I had something seriously wrong with me and that I might die. After this I went to the doctor who told me I was fine and that it was psychosomatic.
Treatment:
So I went to an Osteopath and they confirmed that I was “wound up tighter than a barrel” as they put it. It turned out that because of my hearing loss I had been cocking my neck to hear people talk and my balance issues had resulted in me walking with my neck sticking out forwards. This all lead to my neck muscles contracting and in turn causing tension headaches (the pain behind my eye). The osteopath gave me a series of exercises to help stretch out the neck muscles in the future. On top of this I shared my worries with friends and family which all helped to alleviate the symptoms. I also teamed up with a friend and hit the gym and went on long walks in the evenings to stay fit. The best thing I did was to reduce my carbohydrate intake and eat more vegetables and fish. The headaches soon went and with them the acute feeling of depression.
The future:
Looking back to where I was a year ago things have significantly improved for me. The combined treatment I received (VRT, hearing aid, tinnitus management and osteopathy) makes a difference every day, I would say to anyone suffering with any of the symptoms that I had to seek treatment if they have not done so already, things really can and will get better. On top of the advice from the experts I regularly exercise these days too and have lost a significant amount of weight since last year. I believe the exercise keeps me fit in body and mind and also helps with the balance. I have been on two return flights since all this happened too (one to Marrakech and one to Australia), again I was concerned about how this might affect my hearing but it was fine.
I think the reason for my particular sudden hearing loss is rare (as the result of a rabies vaccination), although the symptoms are shared with many people. My case was of great interest to the medical community and a case report will be published in the BMJ soon – I will post a link to this when it is.
In terms of music I do find it much more challenging to play live now, and because of this I have played far less live shows since June 2014. I am however still writing and planning on recording a new EP at the end of this year, so watch this space. I’m not letting the hearing loss determine who I am or what I do, I have just had to shape my life slightly differently to accommodate for it, and despite my hearing loss I am probably generally healthier now that I was before this happened.
Click here to read my original post – Sudden hearing loss
28 comments
Ben McDonagh
Hey Bobinda,
Good write up on a tough personal adventure you’ve been thrust along. I hope this finds its way to others that are facing a similar experience whether it be the 4th stage depression, or the physical ailment of your body nastily knotting as it tries to help to cope with other bits breaking.
You are blessed with an incredible soul, which is only going to burn brighter with the more experience it is granted, but I’m delighted you were able to talk to friends and family to help your healing. I miss you buddy. Hope to see you one day in the future.
x
Rob
Hi Ben, thank you for the message. I haven’t been called that for some years! haha. I hope that you are keeping well and I miss you too. We recently watched some old VHS tapes from gigs back in the day. The 90s feel like some time ago now! See you in the not too distant future I hope.
David
Hi Rob
I happened across your blogs this evening, thank you for sharing your experience.
As it happens I suffered an identical condition at almost the same time as you, June 2014. I did not experience the severe vertigo and tinnitus which you have had to deal with, and I have been extremely fortunate in getting a full recovery.
I am an audio engineer and producer, and therefore I was able to be (at one level) analytical about what was happening to me, and the effect it was having on my perception of the soundscape I live in. I wrote a blog which you may find interesting
https://ffgmedia.wordpress.com
I do wish you well for the future. I genuinely do not know if I would have been able to adapt to life in mono.
Rob
Hey David,
Thank you for your message, I read your blog post with interest. I’m really pleased that you had a good outcome and that your hearing returned. Mine is still gone two years on, it’s been over a year now since my last gig but I am spending time writing and recording. Im aiming to play some shows in the coming months and see how it goes. It was fascinating to hear you describe your journey from an audio engineers POV. I still find mixing audio for video production challenging. I have to sit side on to the speakers! Haha
Dave
Hi Rob,
I have had this same type of hearing loss in my Right ear that started back in January. My left ear already has greatly reduced hearing. I went right to the ENT who put me on high dose prednisone for 2 weeks. It cleared it up but it kept returning every few weeks and the steriods were really messing with me. After 6 rounds of steriods I starting looking for another option. I then went to a neuro otolaryngologist. We agreed to try the ear injections and I pretty good results without the side effects but still only getting a couple of weeks before it would dismiss again. Each time comes with anxiousness and worry that it may not recover.
Just recently I became aware of the work by Dr Joel Furhman who promotes fasting and heathy eating to cure many chronic illnesses. I decided to try a short 24hr fast the next time my ear lost its hearing. Within the 24h my ear returned to normal. About a week later it happened again and I fasted 24h and achieved the same result. About 10 days later it occurred again and I fasted for 42h. The hearing returned at 24h but I decided to go longer to see if it helps. I am only just over a day out. So I will see how it goes. In Dr Furhman’s book Fasting and Eating for Health, he recommends a physician monitored much longer fast, 2-3 weeks, to cure chronic illnesses. I may consider it but it is hard to plan that amount of time off. Hopefully I will good luck with the shorter fasts and heathy eating. I definitely like that I am achieving great results without the drugs.
Rob
Hi Dave, thanks for your message and sharing your story. The fasting and healthy eating sounds very interesting, I will look into it further. I think that a lot of illness can be resolved or at least greatly improved through diet alone. I really hope that your body manages to stabilise, I understand the anxiety you feel with the hearing coming and going like that, it’s incredibly distressing. The one thing I would say is that even though mine didn’t return I did find it possible to move on with my life eventually. There are still times when it worries me and I feel a bit down but no where near as frightening as during the first few months. Good luck on your journey and please let us all know how it goes 🙂
Call Me Al
Thanks for sharing this. I had a very similar experience about 10 months ago. Mine was brought on within a few hours of taking one amoxicillin pill that should not have been prescribed to me, due to a previous recorded reaction to it which resulted in temporary vertigo and tinnitus. This time round the reaction was much more profound. Treatment was then delayed for 14 days, with initial diagnosis being ear wax and then a further delay waiting for a hearing test! I feel very let down by these ‘professionals’ and even now I find this aspect of it very difficult to come to terms with. I have reduced my hours, and so my pay, at work because my brain and eyes are working overtime to get through each day. My social life revolved around music and my main hobby was playing guitar so I was left quite devastated. I’m left with constant tinnitus and vertigo (which continues to improve with lots of walking). After eventual treatment I recovered some low frequencies but at low volume. I seem to hear bass up to about 350hz then nothing until about 3500hz and then nothing again after 4000hz. I’m interested to know more about the hearing aid you use and to know what makes someone a candidate for one. Until reading your post I’ve really ruled the idea out as I can’t imagine I would be a suitable candidate but perhaps I should pursue this further.
Jane Welsh
Hi Rob, thanks for sharing your story. About 8 weeks ago, I bent down and suddenly went deaf in my right ear. Initiall I wasn’t particularly concerned, believing it was probably earwax. To cut a long story short, I’ve been diagnosed with Sudden Sensory Hearing Loss and none of my hearing in that ear has come back or is likely to. As you know, it’s been pretty tough. I’m trying to stay positive and just wanted to let you know your story has really helped me over the past few weeks. Thanks for sharing. Jane
Rob
Hi Al,
Thank you so much for your comment. I am really very sorry to hear about your experience which sounds like it was avoidable which makes it all the worse. My hearing aid was given to me through the hospital where I was treated, so it was on the NHS. Its a very small little thing, totally discrete and very comfortable. It is moulded to fit the inside of my ear perfectly, so I recommend that if you have the choice. Its also brown to match my hair colour, they come in a range of snazzy colours too like gold and silver. I will try and locate the info about the exact model for you. I highly recommend getting one!It really reduces the tinnitus by a huge amount in my bad ear, I think even if you have a small amount of hearing damage its certainly worth looking into getting one. Can’t encourage you enough. I would be lost without mine now, especailly when out and about.
Rob
Hi Jane,
I am sorry to hear about your SSL. Did anything trigger it other than the movement, were you on any new drugs or did you have any injections around the time of the loss? Did they offer you steroids immediately after it happened? Do you have tinnitus with it as well or balance issues? Please do let me know. Thank you for your comment, Im glad that my story has helped in some small way. You are not alone! Best wishes Rob.
Jane Welsh
Hi Rob,
Thanks for replying to my post. In answer to your question, no I wasn’t taking any medications and didn’t have any injections. I literally bent down to pick something up and went deaf. Unfortunately, the first G.P. I saw seemed pretty disinterested and prescribed me some ear drops for five days. When it didn’t clear up, I went back and saw a different G.P. who immediately sent me to the ENT department at my local hospital in Exeter. I had a hearing test which confirmed that I’d lost all of my hearing in that ear. They prescribed me steroids and sent me on my way. They didn’t work and to make matters worse, I couldn’t go through with an MRI scan as I’m really claustrophobic. I can honestly say, it was one of the worse experiences of my life. Felt like I was being buried alive! I’m now waiting for a CT scan to see whether it shows up any kind of tumour, but unfortunately the wait has been a long one due to the fact that I cocked up the first scan so I’ve had to wait my turn, which is fair enough I guess. As you know, it’s been a real trauma and I still can’t get my head around what’s happened to me. I was pretty fit and active and the whole experience has left me in total shock. Worse thing is the constant tinitus in my ear. That takes some real mental strength to tolerate. On a positive note, my G.P. has been very supportive and has assured me that once we get the results from the CT scan, we can then start pushing for a hearing aid which should help with the tinitus. Until then, I’m just trying not to go round the bend with the constant noise in the ear! I don’t know whether you experienced this, but everything sounds kind of weird and distorted in that ear. Anyway, I’m trying to keep positive, but it’s been very difficult as you know. By the way, I listened (or tried to) to some of your music on Youtube. Really enjoyed it so you have a new fan. All the best Rob and thanks again for sharing your story. It’s been a great help. Jane
Rob
Hi Jane,
Thanks for sharing the details of your story. Yes once you get that hearing aid it will improve things a lot. I would push for it sooner, I don’t see why they need to wait for the scan results, that is not going to change the fact that you are deaf is it. The tinnitus is affecting the quality of your life, so tell your GP you want the hearing aid now. A few other things you can do to improve the tinnitus include cutting out caffeine, drinking beetroot juice and taking various vitamin tablets, cut out alcohol and nicotine too if you don’t already. I was recommended some by a tinnitus specialist at the hospital. Also getting regular exercise and eating healthily helps the tinnitus a lot, as well as getting at least 8 hours sleep a night. You are also not alone in your anxiety around having the scan done, I found the MRI experience frightening but actually the fear of it is much worse than the reality. Theres a panic button if you need it. But actually you just need to get yourself into a relaxed place, meditate etc. Maybe look at some hypnosis sessions leading up to the scan if you go for one in the future. It works. regarding he distortion in the ear, my hearing loss was so profound that without my hearing aid I can hearing virtually nothing in that ear. With the hearing aid I do hear some sound and yes its very distorted and computerised sounding, however that is much better than no sound at all. After a while the brain tunes out those unwanted tones and sounds. While its fresh you over focus on them because they are different. Staying calm and being healthy all helps with that too. Loosing your hearing suddenly is a very traumatic event, it throws your body into fight or flight. All I can say is that it does get easier I promise and if you follow some of the tips above it will get better sooner. Thanks for your comments on my music, I appreciate it.
Jane Welsh
Hi Rob,
Thanks for getting back to me with your positive comments. I can’t begin to tell you what a comfort they’ve been. It’s early days for me yet and I’m still finding it very, very difficult to come to terms with what’s happened to me, so your advice and words of encouragement are really welcome. I’ll take your advice and start pushing for the hearing aid now. I can’t help feeling that the ENT Department have more or less just left me to get on it with it, so I will start being a bit more assertive regarding hearing aids.
Once again, thanks again Rob. I’ve been like a total mad woman endlessly looking up different websites since this happened to me, all of which are pretty depressing and full of horror stories, so your page has been really uplifting for me.
I will try the beetroot juice and try to cut back on the coffees.
I’ll also let you know what happens with the hearing aids.
All the best,
Jane
Rob
That’s great Jane, thank you for sharing your story with me on on my site. Your words will in turn give more people support in the future. The net is full of negative information and mis-information. I encountered exactly the same things when I lost my hearing. People tend only to share the really bad stuff or untrue stuff and not the good and genuine stories which make up the majority of peoples real experiences of hearing loss. Check out the charity Hearing Link as they are good people and offer good advice and there are also different support groups on Facebook. Please check back in with me again whenever you need and good luck getting that hearing aid sorted as soon as possible. Let me know what happens next.
Jane Welsh
Will do Rob and thanks again for your informative and supportive site. Wanted to ask you, are you gigging now? I’ve been listening to quite a bit of your music and you’ve got a new fan. Mind you, listening to music is now challenging to say the least which is a shame as I’ve always really been into my music, but again, I’m sure this will get easier in time and hopefully the hearing aid will help. All the best Rob. Jane
Rob
Hi Jane, I haven’t really been gigging much at all lately as it is proving challenging for me. However I am writing still and working on a new EP to follow up on HALF-HEARD. If I do start gigging again I will post the gigs on my site on the gig page and probably send out a mailer, if you’re happy to join my mailing list I’ll add you to that 🙂 I appreciate your support of my music, thank you!
Jane Welsh
Glad you’re still writing your music Rob. You’re very talented. Let me know how to join your mailing list. Jane
Rob
Thank you Jane, you can sign up to the mailing list in the footer of my website http://www.robfinlay.co.uk/ 🙂
Johhny
I also suffered severe SSHL in one ear and loud tinnitus. This has improve some what but has left last hearing loss. I am quite certain my SSHL was brought on by using Viagra as it happened within a few hours. I have previously had some adverse effects with Viagra before including temporary tinnitus but never SSHL.
Rob
Thanks for your message – it sounds like you had a bad reaction to cause the hearing loss. I hope that your condition continues to improve over time.
Leon
I had sudden hearing loss in my right ear in 2011. It was a very frightening experience that occurred simultaneously with my first gout attack and the birth of my first daughter. What a mix!… I saw my GP who was totally disinterested and said it was “probably wax”, then I saw an emergency GP who gave me eardrops, then different audiology doctor who actually looked into my ear and saw there was no wax and that the eardrum looked healthy. Then I began to realise something really bad had happened to my ear. After a few weeks I saw a NHS audiologist who confirmed that it was SSHL. Then followed MRI and CT scans which thankfully showed nothing. Gradually over months some recovery occurred, luckily in the high frequency part of the spectrum (which is better for hearing speech) . The hearing loss has been equally replaced by tinnitus and a never-ending feeling that there is a blockage in my ear, From time to time I have odd ‘popping’ sounds in my ear….. For the most part I have adjusted to the new normal . It has affected my appreciation of music — listening to music often makes me aware of the loss of hearing. I was a semi-professional musician but since the hearing loss I haven’t played in a band, being in a situation of loud gig or rehearsal room makes me feel uncomfortable. I need to preserve all the hearing I have.
Rob
Hey Leon, Wow that was a lot of things to happen in a short space of time! It sounds like we should start our own band of half hearing musicians! haha we could all play really quietly with earplugs in… Seriously though thanks for reaching out and sharing your story. It’s an all too familiar scenario I hear with people going to the docs and not having the symptoms of SSHL recognised. I have a custom built ear plug now that I wear in loud environments or if I go to see a band. Don’t let your hearing loss get in the way of your love of music, the more you listen to it the quicker your brain will adjust. Try listening in the car because there’s so much background noise anyway that your brain will automatically tune that out first 🙂 Report back and good luck! Rob 🙂
Jane Welsh
Hey Rob, just thought I’d post an update about my SSHL. Following your advice, I wrote a letter to my consultant at the hospital who referred me to the NHS Audiology Department, who’ve been absolutely wonderful. They’ve now fitted me with a hearing aid and I can’t tell you the difference that has made. It doesn’t help too much with the hearing loss, but the benefits to the tinnitus have been dramatic. They’re also trying to help me to manage my tinnitus, the secret being stop listening to it, thinking about it or reacting to it! I feel a lot more positive now, but I’m now having to learn how to adjust to losing my hearing and the difficulties this can present on a daily basis. I’m slowly getting there. I’ve started to listen to music again in the car because, as you say, there’s so much background noise anyway it makes it easier for your brain to adjust. For anybody else who’s just been diagnosed with SSHL, all the I can say is, it will get better! Stay positive and don’t read all the horror stories on the internet. It would be great if we could all try to raise awareness of SSHL as it’s a pretty scary thing when it happens and late diagnosis seems to be quite a common story. Keep rocking and rolling Rob. All the best Jane
Rob
Hi Jane,
That really is great news, I am so pleased that you have had a positive outcome from visiting your Audiology Department, and the fact that you have started to re-engage with music is a huge step forward. I believe that it’s more important than ever to manage the way you mentally feel once you have been through a trauma like SSHL, and music is such a great way of doing that. We often forget just how many senses we have as humans, it’s way more than 5 and more likely to be well over 30. Here’s an article if you’re interested (http://www.meditation24-7.com/page18/page18.html). So hearing and balance are just two of our many senses, and as we learn to live with SSHL we quickly learn to adapt and rely more on our other senses – think using your eyes for lip reading for one! Good luck on your continued journey of rediscovering your body and it’s amazing potential 🙂 Rob
Tom S
Hi Rob,
Words cannot describe how thankful I am for stumbling across your blog post, I’m desperate to hear how you and Jane are getting on a couple of years down the line.
I live in central Bristol and last Saturday my hearing went in my left ear just as I was walking along after the gym. Immediately I could still hear muffled noises but overnight it turned into nothing but an excruciating symphony of UFO/Electrical noises that were exacerbated by any other noise I could hear in my good ear.
I called 111 who told me it would clear up and to put a hot flannel on it, I went to my walk in centre (Sunday) who arranged a doctors appointment for the following day but I decided to head to A+E instead. They did the tuning fork test and put me on oral steroids (30 hours after it happened).
7 days later and there’s been no recovery. There’s still a chance I’ll have a ‘spontaneous’ recovery over the next week but I’m not holding out much hope given the zero response to steroid.
An audiology test confirms that I have no lower frequency hearing and a tiiiny bit of higher frequency.
The issue for me is absolutely the tinnitus. I have to speak to my partner in whispers, wear noise cancelling headphones and I can’t leave the house without the noises becoming completely unmanageable. I’ve found ways to cope over the last 7 days but I’m terrified because if this is how it is for life I’ve got no chance of living a remotely normal life!!!
How are you getting on now? Your comments about a hearing aid have given me real confidence that I’ll be able to get back to some degree of normality which I’m really thankful for. There are so many horror stories online so it’s been a very difficult week (the steroid haven’t helped I don’t think…).
Thanks again for sharing your story,
Tom
Rob
Hey Tom,
First apologies for the long delay in replying to you. How are you getting on now, has there been any improvement?
The tinnitus is something that you do learn to live with, it has its good and bad days for sure but on the whole, you learn to cope over time. I still suffer with it in the same way I did when it happened but my attitude to it has changed for the better.
It sounds like a frightening time for you. Thanks for reaching out – Looking forward to hearing from you. Rob
Nancy
Hi Rob! Are you able to share the type of hearing aid you have? Thank you in advance.
Rob
Hi Nancy, sure it’s one that I got through the NHS here in the UK. I’ll send you the details.