July 28, 2011 at 1:18 AM
It has been almost a whole year since I joined v.com and first of all, I want to say how much of a wonderful resource it has been for me. Not only has it given me the opportunity to talk to other people with the same interests (which believe me, is a rare thing where I live), but it has really spurred me on with my motivation in playing the violin, and in music in general. So before continuing with this blog, I'd like to say a big thank you to Laurie and Robert Niles for giving us v.com, and to the general community here for being such kind and lovely people, reading my blogs and giving much needed words of encouragement! Thank you!
Now I have that out of the way, I can commence with my actual blog topic - my tinnitus! I wrote a blog about it back in November 2010 which can be found here, but I thought it was time for an update.
Last year, I started going to a tinnitus councillor just to try to get my severity of the condition under control. It was bringing me to the point of tears every day just with sheer frustration at the sounds whizzing around constantly in my head and ears. After 6 months of trying special CD's, I decided they really weren't working and my tinnitus was actually raging more than ever. So at my next appointment, I told my councillor how awful it had been and that nothing had really changed in the long run apart from it getting worse. So, she took the next step which was to give me a small device to wear inside my ear canal which lets out a basic white noise sound (kinda like the sea), re-training the ear to block out the sounds of tinnitus. The good thing with this is that two birds can be killed with one stone, as hyperacusis can also be tackled which is the 'partner' thing I suffer from.
Fairly quickly, I started noticing the effects the device was having on my tinnitus. It was generally much calmer in noisy situations and my hyperacusis wasn't as bad. But then, disaster struck when the device broke and I had to wait until my next appointment to have anything done about it. When I did go to the appointment, it was replaced. I found out that the devices had a known fault on them that couldn't be fixed and once they had gone, they had gone. They last longer with light use, but I use mine heavily as I need assistance when I venture anywhere out of the house. So within a couple of weeks my second one also broke.
I made do for a few weeks without it, but the tinnitus started taking over my life once more. When I snapped a few days ago finally and was in tears, I rang the hospital and made an appointment. My councillor had a new treat for me when I arrived the next day. It was a new device! Not just a replacement of the old type, but a brand new, more reliable, different design device! Okay, yes, I have to throw the aesthetics out of the window with this one as it is a 'behind the ear' (BTE) device that looks like a hearing aid. But I don't really care, I'm just happy my tinnitus is finally getting back under control again. The good thing about the new device is that it has been 'tuned' especially to my needs too, so the noise is the perfect pitch, dynamic and more. It has excited me probably a little bit too much, but seriously, when you go from extremely bad to feeling quite good within a day, the difference really is wonderful!
Tomorrow I'm going to go shopping for some cool new stickers to stick on the aid! Then, I'll be wanting to show it off to everyone! I think I might get a treble cleff, or music notes, or a violin! What do you think?
Eloise. I am so pleased for you that you're getting things under control. I can't imagine how terrible it must have been for you. Especially as you are so musically inclined. Hearing is my favourite sense.
From your description of something you wear behind your ear I can't imagine how you're going to be able to get a sticker small enough to fit on it that can also be seen - maybe I'm just ignorant and unimaginative :-)
Julian, thanks for your response :)
It has been a terrible time for me with my tinnitus... especially as mine is more noticeable when there are sounds around rather than the typical 'when it's quiet, you can hear it.'
I also have another update! I went shopping today and found some stickers, and I have actually put a little sparkly violin on it now! Now I'm cool! Here is a (slightly unclear) photo of my sticker! :)
Well done for your determination to beat this thing. By the look of the new device it is not really all that ugly (and who cares as you say). And I LOVE the violin sticker.
Wow, even more spectacular than I thought (the sticker, I mean). There was a story on our local radio station recently about someone who is studying the use of biofeedback to make tinnitis more tolerable. I just googled it--seems like they've been doing it for many years. Best wishes!
Oh, you have my sympathies on the tinnitus! I just have a tiny bit, but my sister has it terribly. It shrieks and screams by the end of the day and forces her to hole up, in her home, just to escape any further outside stimulus. She's found no help for it, but I'm sure glad to hear you have!
Wow Eloise, what a path you've had. I'm happy that you are on the right path and hope this latest device lasts forever. Your story reminds me of my lifetime quest to rid myself of severe headaches/shoulder and neck pain. I'm currently doing therapy on my neck but that is triggering my pain more so than usual. I'm beside myself on what to do aside from eating Advil and lying in bed all day. The good thing for me is that playing violin does not contribute to the pain. The position of my neck is actually one of more relief. Odd, but good.
Here's to your continued success on fighting and defeating tinnitus.
Lovely news Eloise - I have tinnitus too but its very very minor compared to yours as its there when things are quiet (as they are now, sitting early in the morning typing on the couch). I've had it all my life - and you will probably relate when I was suprised when other people said that when it was quiet, it really was quiet! Mine gets much worse after loud sounds, particularly of long duration such as bar music - which is probably good for me ;)
Interesting about the tuned noise approach. I suppose what it does is to desensitize the central processors of the offending frequencies - like getting used to hot water in the bath! And thats probably why the effect is only temporary. From what I read most tinnitus is generated in the brain, not in the ear - making it a good candidate for reprogramming - as with biofeedback suggesteda above.
If the look of device bothers you perhaps you could fake it as an ear phone (get a cheap one and stick the back of it to the outside ;) ! But the sticker works great too :)
Such a chore for you to have nature playing this trick on you. You can get a regular magazine from the Tinnitus Association to get it in perspective. Can you still hear music apart from the nuisance sounds? You will adapt to a workable formula eventually. The novelty part is the hardest stage. Keep a diary of your progress as you are such a fine writer. It may help others who suffer in the same way. Fingers crossed for you.
Have you ever been to a Chinese acupuncturist? There are herbal remedies that might help. I too was suffering from tinnitus and it got to the point that it bothered me quite a bit. Then I took some Chinese herbs and it doesn't bother me any more. Might be worth looking into. I don't even know the name of the herbs I took. The label and instructions are entirely in Chinese. Thankfully, my wife was able to read the label for me. The medication consists of tiny little black balls, the size of BB's. You take 8 of them, 3 times a day. It is a very old and trusted Chinese herb; people have been taking for centuries. It apparently helps with your kidney function, and somehow that is related to tinnitus. It mentions tinnitus (in Chinese) on the label as one of the things it can be used to treat.
One more thing; have you paid attention to when it is worse? I have noticed that if I do not get enough sleep, it tends to be worse. I sometimes take melatonin (just 1-2 mg before bed time) to make sure that I get 8 hours sleep, and that seems to help quite a bit.
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