Update at Nearly 7 Months

Discussion in 'Support' started by brownbear, Feb 23, 2017.

    1. brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      Recap - I developed sudden sensorineural hearing loss in my left ear on the 27th July 2016. I have had severe tinnitus since then. I have multiple new sounds now. The main noise I hear is a loud high pitched hiss in my left ear which is in time with my pulse. I am not able to mask this sound at all - I can easily hear it in the shower. I also have a constant high pitched tone which I hear outside my head. In my left ear I get bursts of clicking sounds that sound like a typewriter about every 20 minutes. If I wake in the night (not often) I get a low droning sound in my good ear.

      Current status
      The good news:

      1. It no longer affects my sleep at all. In fact I look forward to bed time as I often feel quite exhausted by the day with tinnitus. I wonder whether that might be a difference between those with severe and mild tinnitus. I notice that with many of the patients I see with milder tinnitus that they can't hear it at all during the day but they dread the night time when it becomes more obvious. I wonder whether when it is blasting at you all day you are just looking forward to the peace that sleep brings

      2. I have resumed all my normal activities. I would estimate that I spend about 50% of my day feeling comfortable with my tinnitus.

      3. I am much healthier and exercise regularly and drink less alcohol

      The bad news:

      1. I have experienced almost no habituation with regard to perception. I feel as though my mind is constantly still aware of the sound and this leads to endless rumination about it. I do however seem to be able to do this now alongside my normal day

      2. In the other 50% of my day I feel uneasy about my tinnitus and somewhat restless.

      3. I still have moments of high anxiety/panic with it, but this now seems to happen about once a week or so rather than several times a day!

      4. Every morning is still a real struggle for the first hour or so. It feels like an electrical storm in my head when I get up. My head feels like it is vibrating with the tinnitus.


      So there we are. Things are not great and I think it will be along time before I start to not notice for any significant period of time, but I feel as though I am getting glimpses of light at the end of tunnel.
       
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    2. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Exactly my experience !
       
    3. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      Hi @RaZaH. Yeah it's really tough to have to wake up to that every day. Like groundhog day except not funny. It is such an effort to get through that each morning. I really wish I could start the days with a better mindset but so far no luck!
       
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    4. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Indeed , as it stands this is the worst tinnitus aspect for me ,starting every day like this is so demoralizing, when waking up I feel I am not really equipped to deal with this.
       
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    5. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      I'm sure you have tried most things but this is what I try to do in the morning depending on how much time I have.

      If lots of time: Get up quickly, do 30 minutes of mindfulness mediation. Go for a 30 minute run. Come back and have a hot shower.

      If little time: Get up quickly, have a hot shower. Remind myself of the good and valuable things in my life. I don't think it helps much to think 'it could be worse ' kind of thoughts, but I do think it is worth consciously recognising what is good about your life.
       
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    6. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      I cannot imagine doing meditation after I wake up ! Thats when my T is the worst , you are one hardcore dude ! :)
       
    7. Alue
      No Mood

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Yeah, mornings suck. Then again evenings suck too, at least for me it's loudest in the evening after a full day.

      I'm not sure how often people habituate to loud tinnitus to the point where it's not even in their perception.

      Do you have hyperacusis too? I thought your SSHL was only in one ear. What's causing the other ear to act up?
       
    8. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      Hi Alue. No idea why I got new sounds. Best guess is that the bombardment of sound in my bad ear has led to some kind of centralisation/cross over.
      I don't think I have hyperacusis. I do find some sounds irritating but not sure if I always did. I also find that any attempt to mask my tinnitus seems to wind it up to a new level - could be a sort of hyperacusis but I try not to dwell on it.
      I hope that in the end one can habituate no matter what. I do see many patients for which that is the case. I have to admit that I am still at the stage where I find that hard to believe. It does seem to be true from my medical experience though that most diseases act in a pretty predictable way. If that is the case then the stats would suggest that most of us should get there eventually!

      There have been studies over many years that suggest that the volume of tinnitus (and measuring that may well be flawed) is not related to distress/outcomes. I suppose there are two ways to look at that :
      1. Reject that hypothesis/assume that our tinnitus is somehow worse
      2. Perhaps find that possibility somewhat refreshing and liberating

      Just some random thoughts really. I'm not in great shape so I can't talk.
       
    9. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      @RaZaH . I did a mindfulness based CBT course for tinnitus sufferers. I could talk forever about it but essentially doing the meditation when you feel at your worst may be the best time. I am told that in time your brain may begin to associate even your worst tinnitus with a more peaceful state of mind.
      Depression (regardless of tinnitus) is also well known to be worst for most people in the morning. I do wonder whether that may be playing a part with me too. In a way I way I hope it is. Mindfulness is supposed to be as good as medication in treating depression. So I am persevering with the meditation to see if it helps my mood and perhaps also my tinnitus. I do however feel a bit uneasy about this, as I don't think the level of my tinnitus is that closely linked to my mood.
       
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    10. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      That actually makes a lot of sense to me ....bit of a lightbulb moment actually .
      Thanks !
       
    11. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      No problem, now we are both all sorted and can get on with our lives!!!!!

      Seriously though I do have a lot of respect for my therapist who has been helping tinnitus sufferers for 30 years. I do think there is something in the mindfulness. It is not about defeat or accepting it, more ALLOWING it be present and co-existing with your tinnitus in a more comfortable way. One thing he once said to me is 'where is the battle with tinnitus, if there is no resistance to it'.
       
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    12. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      This assertion has always bothered me a bit because I think its been turned on its head.
      I would think that this means that having low/mild tinnitus can be just as distressing as having loud Tinnitus (a foreign sound in your ears at any level is obviously distressing and while you havent experienced severe tinnitus , the mild tinnitus feels severe ) and NOT that having severe tinnitus should be the same to overcome as mild T.

      I feel that this assertion is often used to tell people with severe tinnitus that the severity should not affect their chances of ignoring it like people can do with mild tinnitus.

      Lots of people with severe tinnitus would be happy and feel cured with mild T.

      If that makes sense.
       
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    13. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      I can see where he is going with that ...for me its the mornings ...there is no battle and no resistance.
      I am being ambushed , sleeping naked in the woods , defenseless and unprepared :p
       
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    14. Foncky
      Tired

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      March 2004
      Cause of Tinnitus:
      Music. Balloon. Genes.
      You make perfect sense Razah, that's how I feel.

      I used to have a mild T before this. I would be totally happy with my old T.

      Thank you brownbear for coming back here with this update.
       
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    15. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Did this mild T cause you distress ?
       
    16. Capricornus
      Inspired

      Capricornus Member

      Location:
      Sweden
      Tinnitus Since:
      10/2016
      Cause of Tinnitus:
      Noise induced
      @brownbear, Thanks for sharing your improvements!

      If you can hear it in the shower it must be pretty damn loud! Does that mean that the T "screams'' in a quiet room or is it just that it competes with a loud environment? This is something I always have been wondering.

      Take care and good luck in the future! :)
       
    17. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      I do agree with you Razah. I really think that the volume matters. My other tinnitus sounds I hear are much quieter than my shitstorm hiss and in a relatively short space of time I found them not bothersome and can tune them out pretty easily.

      I do hope however that in the end it can be possible. I had a recent experience which gave me some hope. It is basically like a typical CBT type argument except i experienced this personally and so it has had more impact on me:

      So I started a long drive and realised I had left the latches off my bike roof rack. In the wind the latches were hammering on the roof above my head - VERY loud and irritating - much louder than my tinnitus. I don't know why but I thought I would listen to this banging sound as a distraction for my tinnitus. The strange thing was that no matter how hard I tried I could not keep my attention on the loud noise of the roof rack, I just kept forgetting about it (for ages like 20 mins). I can only assume that because that sound had no negative emotional aspects to it for me, that I just kept tuning it out without effort.

      So here is my hope, doesn't matter how loud it is, if it has absolutely NO negative emotional impact on me, I should be able to tune it out. As I said though, no luck thus far.
       
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    18. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      @Capricornus. Yes my tinnitus I perceive to be very loud but it really isn't much worse in the quiet which is strange. It is just that there is nothing that covers up my tinnitus. I can always still hear it. I went to watch England play rugby at Twickenham - 90000 people singing the national anthem - I could easily hear my tinnitus. It's so weird.
       
    19. Foncky
      Tired

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      March 2004
      Cause of Tinnitus:
      Music. Balloon. Genes.
      None !
       
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    20. Capricornus
      Inspired

      Capricornus Member

      Location:
      Sweden
      Tinnitus Since:
      10/2016
      Cause of Tinnitus:
      Noise induced
      That's actually strange, but I'm glad you're coping well!
       
    21. Sam Bridge

      Sam Bridge Member Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      Woahh, you hear it loudlt over the stadium or its just there in the background along with the stadium noise?
       
    22. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      No it is definitely just that it is perceived separately to all other sound in my experience. It's definitely not louder in dB! (I hope!!)
       
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    23. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      @brownbear - thank you for the update!

      It's an interesting theory. Mine gets to its worse point in the afternoon-evening so I look forward to getting some sleep so I can "get it over with" and reset to a more bearable stimulus in the morning.
      I don't know if the volume is worse in the evening, but it's clearly harder for me to cope with it - possibly because I'm exhausted from the coping mechanisms from the whole day.

      Same here - I haven't habituated at all (almost 1 year in).
      I keep running my day as if it wasn't there, but concentration is difficult.

      Do you have pointers to those studies? I'd love to read them.
      It would be nice if it were true, but it flies in the face of natural (hardwired) response vs intensity of a stimulus (just like we'd be more comfortable with a mild stabbing than a deep stabbing), and it's definitely not what I get from the sufferers on this forum.
      Of course this forum may have a statistical bias, as it may contain a large amount of people who are struggling with intense T, while those who aren't suffering aren't even here.
      But I have to say it's counterintuitive to me.

      Same here - I have multiple T sounds, and the ones that aren't very loud (compared to the massive high pitch) are easily tuned out.

      Thank you again for the update!
       
    24. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Out of curiosity @brownbear do you get a click sound in your ear while talking or even when walking briskly , like up stairs or jogging lightly ?
       
    25. Sam Bridge

      Sam Bridge Member Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Loud music/gigs probably
      I had that for months!! Sounded like it was in my head though. It stopped happening about a year ago.
       
    26. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      Hi @RaZaH . No my bursts of clicking come randomly. I do find that my hissing is much intensified by most activity like running and climbing stairs. Also if I lower my head even slightly it gets way louder and my whole head fizzes with it, especially the back of my head. It's a real joy.
       
    27. Foncky
      Tired

      Foncky Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      March 2004
      Cause of Tinnitus:
      Music. Balloon. Genes.
      I have that sometimes, it's TTTS related I think.
       
    28. RaZaH
      Cheeky

      RaZaH Member Benefactor Hall of Fame

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      TTTS ? Which is ?
       
    29. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      @brownbear Twickenham is loud can hear it from here...thought you were from the U.S.?

      When I bend, say am hanging laundry am sure it gets louder, same if I strain, that's why I've found it hard to excercise, mind you don't need many excuses...

      In a very similar place after 8 months, think rather than loudness it's the high pitch that bothers me, as many everyday sounds are simply lower and don't mask it. As you say when you turn your surrounding noises off you'd expected the T to be off the charts but it isn't necessarily as it is the pitch that's higher than the TV etc. not the noise louder. Do t get me wrong it is moderately loud but very high pitch and electric.

      I go to bed exhausted from the tiresome day that tinnitus provides and sleep all night, need so much sleep these days. I have come to the same conclusion regarding lack of sleep and t, know someone who's bothered by it mainly at night but broadly fine during the day. For those of us for whom T interferes with daily activities at night the T is not interrupting anything anymore or at least anything that requires engagement.

      Also note Dr Will Sedley will be taking questions, he's a neurologist so thought you may come up with some good questions, if you had any...

      Take care
       
    30. AUTHOR
      AUTHOR
      brownbear

      brownbear Member

      Tinnitus Since:
      July 2016
      Cause of Tinnitus:
      Sudden sensorineural hearing loss ? cochlear hydrops
      I have had a pretty good week. My tinnitus is the same as always but I have had no anxiety. Instead of a constant stream of awareness of my tinnitus I have been finding that it keeps dropping out of my awareness. Not for long but I just keep realising that I haven't noticed it for a couple of minutes, throughout the day. I'm hoping this is the start of something but I have had so many setbacks that I'm just not sure.
       

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