1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Tinnitus

Discussion in 'Neurological/Neuro-sensory' started by Mia, Jan 5, 2010.

  1. Mia

    Mia

    Messages:
    10
    Likes:
    0
    London, UK
    Hi. I wanted to know how many other people have tinnitus as part of their ME/CFS? I have it and it's been constant since I became very ill. It varies - gets a bit quieter when I am feeling better and louder when I am feeling worse. It is definitely a good predictor of how I feel generally with all the other symptoms. I would be interested in hearing about other people's experiences with it and whether it has ever gone away. As it is hardly the worst thing that has happened I don't really think about it much - I think trying to forget about it is the best treatment, anyway. I thought it was quite a common ME/CFS symptom but recently someone told me this was not the case. Anyway, I'd be interested if anyone else has anything to share.
  2. Andrew

    Andrew Senior Member

    Messages:
    1,960
    Likes:
    1,222
    Los Angeles, USA
    I got tinnitus well before CFS. My father had it too. It varies from day to day, and over time I've gotten good at ignoring it. I've never heard of it being part of CFS.
  3. Snez

    Snez Senior Member

    Messages:
    160
    Likes:
    6
    Tasmania, Australia
    Hi Mia and welcome to the forums.

    Yes, tinnitus is quite a common ME/CFS symptom.

    Tinnitus has been an almost constant companion since I fell ill. I had sinus and ear problems after a flu virus and then the tinnitus set in. Early on it was particularly bad and would disrupt my sleep patterns.

    I occasionally get these loud surges of noise (like static on the radio) that seems to travel from one ear to the other. I feel partially deaf for a moment or two when this happens. However, I have learnt to live with it and the noises aren't so bad this past year as I'm not as ill.

    I agree that ignoring it is the best strategy.
  4. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    3
    Hi Mia
    I have experienced tinnitis from early on with this disease process. In fact, it may have been one of the earliest symptoms immediately following a viral episode, but I didn't give it much thought then. Initially it was barely noticable and I sometimes thought it was my imagination. Certainly as time passed that changed. It is like a chorus of high pitched locusts - at least that is the only way I have been able to describe it.

    My experience is exactly as you described. I can usually ignore it, except when symptoms are worse or I'm in a crash and at those times it seems so terribly loud and higher pitched. It has never gone away, but when I use to occasionally have some relatively speaking good days, it seemed almost imperceptable, but it was definitely there. It was usually the symptom I would always forget to mention in the early days of talking with first my internist, then rheumatologists (2) and neurologists (3).:rolleyes:

    It can be quite painful at times, but as you say, in the big picture it's not such a horrible thing. We sort of get use to it, I guess.

    Linda:Retro smile:
  5. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I have tinnitus, too, for the last 15 years or so. Only in my right ear. Seems to get worse when my symptoms are worse. Sometimes it can be ignored, other times it's irritating. I had an ear exam a couple of months ago, and was asked if I'd had numerous ear infections as a child. I don't think I had any ear infections growing up, but the examiner was surprised to hear that because she said my ear looked like someone who'd had frequent childhood ear infections.
  6. liverock

    liverock Senior Member

    Messages:
    447
    Likes:
    305
    UK
  7. Mark K

    Mark K

    Messages:
    26
    Likes:
    0
    california
  8. JAS

    JAS

    Messages:
    70
    Likes:
    0
    UK
    I have tinnitus too! The CFS was triggered with an inner ear infection + sinus problems, I suffered an acute vertigo attack where I dropped to the floor..ever since then I have had CFS and one of the numerous symptoms tinnitus. For me certain sounds seem to affect it, like a hairdryer or a helicopter seem to whip it up. I have it all the time but it is not so noticeable in the day where there is more background noise around, at night it can be a pain and is much more noticeable when all is quiet. The locust description is very accurate and when all is quiet I try to think of it like when you are on holiday and you can hear the crickets 'cricketing' outside to try and make into a nice sound as opposed to an annoying one! It is a top A on the piano (I had to find out the note!). However, when putting all the symptoms down of CFS it is annoying but not the worst!
  9. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    When I was first floundering around, trying to find out how to stop feeling so bad, I was told that ME symptoms did not include tinnitus or cognition problems (go figure) so that delayed my dx...

    Circadas, left, right and centre, singing different pitches. A tic-tic-tic on left. Boom boom boom goes my heart (what is it doing in my head) - you have to laugh. Its louder when I'm bad and at night. When I wake up I try to judge how loud it is so I know how my day's going to go. Quite useful, really.

    I have a forty year history of ear infection followed by acute mastoiditus and radical mastoidectomy. I was given abx for every little thing when small, so I guess I grew a resistant bug. Plus ca change, plus ca meme chose, if you can write French without the accents.

    One PWME told me she had had tinnitus, but it went away after the first couple of years :
  10. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    i also have it, it was among my first symptoms. i also had earache as part of the triggering virus. i only notice it when i'm in bed and it's quiet.
  11. Denn

    Denn Guest

    Me too. First thing in the morning and it gets worse on bad days.

See more popular forum discussions.

Share This Page