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.
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.
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.
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.
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
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.
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.
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.
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.
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