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Tinnitus treatment and management

Discussion in 'General and other signs and symptoms' started by MeSci, Sep 10, 2019.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Location:
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    BBC Radio programme on tinnitus

    I haven't listened to this yet so don't know how relevant it is to ME.

    Hearing me

    The Documentary

    (This programme contains audio effects that may cause discomfort to people living with hearing conditions. There is a modified version of this programme, with quieter effects, on this page https://bbc.in/2TrInga)

    What does life sound like for someone whose hearing has suddenly changed? Carly Sygrove is a British teacher living in Madrid. She was sitting in her school’s auditorium when suddenly her head was filled with a loud screeching sound.

    Diagnosed as sudden sensorineural hearing loss, Carly no longer has any functional hearing in her left ear, and battles with the whoops, squeals and ringing that comes from having tinnitus. This dramatically changed her work and personal life, as well as her ability to communicate in a country thousands of kilometres from where she was born.

    It made Carly realise how fragile our bodies are - and how wonderful sounds can be.

    In this intimate programme for the BBC World Service, Carly shares her personal story and speaks honestly about how life with hearing in only one ear is far from quiet.

    https://www.bbc.co.uk/programmes/w3csynqv
     
    Last edited by a moderator: Jun 1, 2022
  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    For me, tinnitus came as one of my first symptoms when I first became unwell in April 2012 (probably not M.E. back then). I have not had one second of silence since, and although you do learn to cope it is a bloody nightmare.
     
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  3. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Location:
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    Merged thread

    How to adapt to living with tinnitus


    The following links are worth reading :

    https://www.actiononhearingloss.org.uk/hearing-health/tinnitus/
    https://www.actiononhearingloss.org.uk/shop/tinnitus-products/
    https://www.actiononhearingloss.org.uk/shop/tinnitus-products/tinnitus-relaxers/
    https://www.actiononhearingloss.org.uk/shop/tinnitus-products/pillow-speakers/

    I was taught by my local NHS Audiology Clinic how to use a tinnitus relaxer properly and it worked for me. They must NOT be used to drown out tinnitus. Instead they must be set at a level just below the volume of the tinnitus, so that the sufferer can hear both the tinnitus relaxer and their own tinnitus. Then they must concentrate on the sound from the tinnitus relaxer. Eventually the brain learns to ignore the sound of the tinnitus.

    [Just as an aside - nobody suggested that I was mentally ill or needed CBT. The advice I got was totally practical and well-explained.]

    I paid for my own tinnitus relaxer and pillow speakers, but otherwise the advice was free (in the sense that any NHS treatment is "free").

    Another possibility that costs nothing is for people to make their own sounds with free utilities on the web. Before I spent any money on a tinnitus relaxer I tried out a "proof of concept" with an old walkman I had and sounds I created on this website :

    http://naturesoundsfor.me/

    Some people like white noise or they may prefer pink noise or brown noise to overcome their tinnitus. There are sample files that can be downloaded on this link :

    http://naturesoundsfor.me/s/white-noise

    And other free options - there are loads of very long Youtube videos with nature sounds that go on for 8 - 10 hours. Just search for "nature sounds for sleeping" or something similar, set the volume appropriately, and leave them running all night while you sleep. My personal favourites are water sounds, wave sounds, and the occasional burst of thunder. Birds drive me nuts!

    I managed to go from suicidal to coping with my tinnitus within about two weeks once I knew what to do about it and had the appropriate equipment, although I kept up the night time sounds for much longer than that - I found them relaxing.
     
    Last edited by a moderator: Jun 1, 2022
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
    UK
    In case anyone is interested I was watching/listening to this vid this morning.

    https://www.youtube.com/watch?v=83laYgUtbv8



    Amazed that a lot of the people commenting didn't know they had tinnitus, also that like me most people seem to have tone 4.
    I've had it in one ear since childhood so I'm sort of used to it now, but a few years ago started getting it in the other ear (not constantly though) and find that more disconcerting.

    I also for a while used to get a pulsating hum in the 'other' ear and for ages I thought that someone must have a generator or something going, and it did almost drive me doolally.
    yes, agreed, and I have the real variety to contend with (Herring gulls).
     
  5. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Location:
    UK
    I had a similar experience - a high pitched whine from my teens onwards, which I adapted to fairly easily without help, and then a few years ago I got a low pitched drone which was a completely different kettle of fish and I was in desperate straits trying to overcome it. That's when I sought help from the Audiology Clinic and luckily didn't have to wait very long before I got an appointment.

    I liked your video - I recognised Tone 4 and Tone 7 as being most like the high pitched noises I get. None of them matched the low pitched drone I get. There were several of the tones I couldn't hear at all!

    Edit : Typos
     
    Last edited: Jan 19, 2020
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Mine doesn't quite match any of the tones. Tone 5 & 10 seemed closest. That brown noise (tone 8) was lovely....could listen to that for hours. Instantly silences the tinnitus.

    Mine started very young and my mother used to find me wandering around the house in the early hours. I thought someone had left the TV on - remember the high pitched sound when the channel went off air? Or that the fridge door had been left open - the sound of the motor working extra hard to maintain the cold temperature, or the radio...... I also used to sleep walk so I'm not sure if she thought that's what was going on.

    Anyway, at some point I simply thought it must be normal. Didn't really think about it until someone I knew developed tinnitus and was climbing the walls. I think they wanted to throttle me when I said "oh, isn't that normal?" .
     
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  7. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Ravn and Invisible Woman like this.
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Lovely @Arnie Pye.....

    I like the sounds of the sea. Or the wind in trees. The variation of noise keeps it interesting.

    On rare occasions when I have managed to get on a beach since becoming ill I'm amazed at the difference it makes to how I feel. I virtually drag myself onto the sand or shingle and minutes later just feel so much better - not well, mind, but better.

    I wonder how much of that is the sound....

    I like my beaches wintry and windswept, mind. Lots of noise!
     
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  9. shak8

    shak8 Senior Member (Voting Rights)

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    Location:
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    Very helpful stuff.

    My tinnitus is mild, I'd guess, high pitched and one-sided and started 10 years ago, associated with hearing loss and becoming unconscious as a child after quite a fall from on high.

    I use ear plugs and noise reduction headphones in the house to soften the screech. Does help.
     
  10. sea

    sea Senior Member (Voting Rights)

    Messages:
    476
    Location:
    NSW, Australia
    Thanks @Sly Saint
    Sounds are closest to 1, 2, 3, 4 and 7 for me. Plus other sounds that weren’t on the video. Different sounds in each ear. I’ve tried matching them before but it’s really hard to pull one sound out of the mix.
     
  11. Dechi

    Dechi Senior Member (Voting Rights)

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    How do you use the pillow speaker and what does it do ?
     
    Ravn likes this.
  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I have a tinnitus relaxer, which is a gadget which makes sounds that mask tinnitus. The sounds it can produce are rain, waves, trains, thunder, wind, a brook, and quite a few others. It has speakers like a radio. It also has a headphone socket that allows for separate speakers to be plugged in. The pillow speakers I bought are two small square speakers that are put under your pillow, so the sounds you hear come through the pillow to both ears. I sleep with my husband and by using pillow speakers it reduces the noise he hears from the tinnitus relaxer (to some extent at least), but luckily he doesn't find the sound disturbs him much anyway.

    These are the ones I bought :

    Code:
    https://www.amazon.co.uk/Sound-Oasis-SP-101-Therapy-Speakers/dp/B004H5IXUS


    They aren't very high quality but they were good enough for the job I needed them to do.
     
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  13. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    My ears hurt after that video, I am using headphones that weren't set to a high volume and those tones were very loud! Be warned!

    I don't have tinnitus, but I do listen to something similar to that while sleeping (described as a fan tone though), using a "Lectrofan" to drown out outside noise when trying to sleep and it is quite helpful. The device itself is a bit overpriced for what it is, but it is convenient and it works.
     
  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I was somewhere between brown and violet noise, I think. It's hard to say. There's something higher but very soft behind it, that only becomes noticeable at certain times.

    It's linked to both my visual snow and migraines, and worsens with fatigue or PEM.
     
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  15. Ravn

    Ravn Senior Member (Voting Rights)

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    Location:
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    Two questions for the tinnitus experts here:

    How do you work out what your tinnitus frequency is? I've been playing around with various online "tinnitus tuners" but all the frequencies, apart from the very low ones, sound much the same to me - and none sound quite like what I hear inside my ears.

    Can you make your tinnitus worse if you pick the wrong frequency for tinnitus therapy?
     
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  16. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I have never given any thought to what my tinnitus frequency is. It wasn't a requirement for learning how to learn to live with tinnitus.

    But, if you are really interested an audiologist can help. Every time I have my ears tested the audiologists can tell when they test me at the same frequency as my tinnitus because it drastically changes my results - there is a segment of the hearing spectrum that they are testing me on where I suddenly seem to hear much better than I do at frequencies either side. The only way to overcome this during the test that works reasonably well is if they test my ears using sounds which "wobble" so I can tell the difference between the tinnitus and the sound I'm being tested on.
     
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Like @Arnie Pye I never bothered to find out. I wouldn't be at all surprised if mine changed slightly from time to time. I know I occasionally get a very loud high pitched tone over the regular tinnitus that just lasts a few seconds and disappears.

    I'm not an audiologist nor do I have any medical training but I shouldn't think so. Naturally you wouldn't want any noise that are too loud, but it's the frequency that's important so you shouldn't need the volume too high on whatever device you are using.

    You might find that as you explore frequencies and pauses between sounds your tinnitus becomes more noticeable because you're focusing on it and listening out for it. Especially if it's fairly recent onset. That's quite natural I think. As I write I am conscious of my own simply because I'm thinking about it. It will settle down again - or rather I will focus on other things and it will fade back into the background of my consciousness.
     
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  18. Dechi

    Dechi Senior Member (Voting Rights)

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    Thank you ! I also use a tinnitus relaxer (I call it a white noise machine) but since I sleep alone, it doesn’t matter if it is loud.

    I’ve tried in the past to not cover my tinnitus (I have both high pitch and low pitch. The high pitch I don’t mind and don’t cover, but the low pitch drives me insane) but I am not able to sleep. I had hypnosis to treat it and it worked but it came back after about 2-3 months.
     
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  19. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Snap! I've had high pitched tinnitus since my late teens and I adapted to it fairly easily. But when I got a low pitched drone it was driving me insane too, and it was the impetus I needed to find a way of learning to live with it. Learning to concentrate on the sound from the tinnitus relaxer rather than the tinnitus itself took some practice and determination, but it worked in the end.

    Does your white noise machine play other sounds apart from white noise? Are they pleasant to listen to? I don't actually find white / pink / brown noise either pleasant or relaxing. Do you like what you are listening to? I decided to buy a machine with a large repertoire of sounds. I experimented endlessly with the sounds it could produce and found the ones I liked the most and were most relaxing. In the end, I usually settled on an ocean wave sound, but would occasionally listen to wind / rain / occasional thunder / trains / a brook. I don't think I would have had any success in dealing with my tinnitus if I was trying to listen to sounds that were not relaxing and pleasant for me.

    One thing I did that helped me... By listening to something that was "real" (slow, gentle ocean waves), I could imagine myself into the situation of actually being on a lonely beach, in gorgeous weather, with fluffy clouds, listening to the waves while lying on a beach. The beach had some pebbles and a few seashells, as well as a few palm trees. I put effort into creating this relaxing scene. Concentrating on that scene and the wave sound helped me to ignore the drone. I couldn't have done this with white noise because it isn't a sound you can attach to a real life scene.

    If I listened to wind, rain, and thunder I could imagine myself anywhere of my choice. But the beach was definitely my favourite relaxing place.

    The annoying thing for me now is that I can't use my sound machine because I'm too deaf to hear it at a volume that allows my husband to sleep too. :(

    In order to get help for my tinnitus I had to get an appointment with my local audiology department. My GP referred me. If you live in the UK could you try getting an appropriate referral in your area?
     
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  20. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Once you know what your tinnitus frequency is, what do you do with the information and how does it help your tinnitus?
     
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