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Tinnitus Poll : Making a distinction of subtypes

Discussion in 'Neurological/cognitive/vision' started by mariovitali, Jun 27, 2019.

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Tinnitus is a frequent symptom of PwME. What is your experience? :

  1. a) I have tinnitus that occurs in both ears (bilateral) and lasts for several days/months

    31 vote(s)
    33.7%
  2. b) I have tinnitus that occurs in both ears (bilateral) and lasts for seconds

    6 vote(s)
    6.5%
  3. c) I have tinnitus that occurs in one ear (unilateral) and lasts for several days/months

    11 vote(s)
    12.0%
  4. d) I have tinnitus that occurs in one ear (unilateral) and lasts for seconds

    10 vote(s)
    10.9%
  5. e) I do not have tinnitus

    23 vote(s)
    25.0%
  6. f) Permanent tinnitus

    21 vote(s)
    22.8%
Multiple votes are allowed.
  1. sea

    sea Senior Member (Voting Rights)

    Messages:
    476
    Location:
    NSW, Australia
    I can’t answer your poll. There is no option for chronic, always there, tinnitus. I’ve had it since my teens
    which was several years before ME/CFS.

    The severity fluctuates with a migraine or a cold but is otherwise unconnected with other symptoms.
     
    MeSci, mariovitali and Trish like this.
  2. Dechi

    Dechi Senior Member (Voting Rights)

    Messages:
    552
    There was no choice for it but I’ve had permanent tinnitus for more than 10 years. It never, ever goes away.

    When my symptoms increase, it gets worse : I get louder bass type sound in one or both ears. When it happens I sleep with a white noise machine on.
     
    rvallee, MeSci and mariovitali like this.
  3. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    445
    @Dechi @sea
    Thank you for your posts. @Trish i was wondering if "permanent tinnitus" can be added as an option as well?
     
    sea, Dechi, rvallee and 2 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    41,486
    Location:
    UK
    Added.
     
    Dechi, brf, MeSci and 1 other person like this.
  5. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    445
    That's great, Thank you
     
    Trish likes this.
  6. Dechi

    Dechi Senior Member (Voting Rights)

    Messages:
    552
    Survey answered, thank you !
     
    mariovitali likes this.
  7. Creekside

    Creekside Senior Member (Voting Rights)

    Messages:
    346
    I think my tinnitus started gradually sometime after my ME did (that was 2001). It might have been age rather than ME. I haven't noticed a correlation between ME symptoms and tinnitus severity, but hadn't really paid attention before.

    My tinnitus did go away temporarily (hours?) last fall...after riding a mower for an hour or so (yes I wore earplugs). Not recommended as tinnitus treatment. :)
     
  8. Joeblow604

    Joeblow604 Established Member (Voting Rights)

    Messages:
    36
    Location:
    Canada
    Mine started 3 months ago and goes steady day and night. Never had it before ME or the 8 years sick. I don't understand it though as everyone describes it as in one ear or both but to me it feels like its in the center of my head. I also have a terrible headache, pressure in my head and like motion sickness. Sometimes since it started I get tooth aches and facial pains but those come and go and no signs of infection. I'm at a loss with it.
     
  9. Trish

    Trish Moderator Staff Member

    Messages:
    41,486
    Location:
    UK
    That sounds like something you need to consult your doctor about.
     
    Wonko, Wits_End and Joeblow604 like this.
  10. Joeblow604

    Joeblow604 Established Member (Voting Rights)

    Messages:
    36
    Location:
    Canada
    Yes, I doesn't feel much like an ME thing to me.. I'm working on my GP but it seems to take multiple attempts to get him to investigate a new symptom and not write it off as ME unfortunately.
     
    MeSci and Trish like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    9,039
    Location:
    Canada
    From my experience, likely to end in a shrug and "must be anxiety", said the ENT specialist without asking any other questions. I have had similar symptoms for years. I did have a CT scan and MRI since then, thought not specifically for this. Nothing shows up at first glance so that's the end of investigation.

    It's probably something that is solvable with significant personal efforts, basically driving the whole thing. Not having GPs help with that is a serious impairment, especially as in my health care system GPs are necessary for everything.

    Not to discourage against doing trying to figure it out, just my experience of pretty much the same symptoms and the usual apathetic indifference. With a useful GP it may be worth the trouble, but I wouldn't know about that.
     
    Joeblow604 and MeSci like this.
  12. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,532
    Location:
    Cornwall, UK
    I haven't checked to see if this has already been discussed, but I seem to get tinnitus (much?) less often if I put cotton wool in my ears before washing my hair.

    Avoiding getting gunge in there or poking with fingers or anything else also seems to help. It seems to cause a build-up of stuff which becomes increasingly hard to shift.
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,402
    Location:
    London, UK
    Anything blocking the external auditory meatus (earhole) is expected to increase tinnitus simply because it starves the acoustic neurons of sound and tinnitus is largely due to acoustic neurons turning up their gain settings because they think they are starved of sound.
     
  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,284
    I have permanent bilateral tinnitus that predates ME by decades. Mine started after a minor ENT op. For years I thought it was normal and everyone had it.

    I don't think my ME makes a difference, except that when you reduce stimuli it will become more noticeable.

    I recognise some of the vestibular migraine symptoms and have suffered migraines from a young age too.
     
    MeSci and Trish like this.
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,284
    My own personal experience - your symptoms might be down to something different -

    I experienced something similar for a couple of years. It interferred with my sleep and my partner's as I snored so badly. In addition my nose tended to become blocked when I was lying down and turning over in bed, looking down triggered nausea. My GP just put me on sudafed which made no difference, but acted like a stimulant. Not what I wanted.

    A consultant I was seeing about something else told me to try fluticasone proprionate in addition to my usual anti histamine. What a difference!

    Be aware though this nasal spray contains a very low dose of a steroid. It's worth it to me for the difference it makes, but other people might feel differently.
     
    Joeblow604 likes this.
  16. Joeblow604

    Joeblow604 Established Member (Voting Rights)

    Messages:
    36
    Location:
    Canada
    Yes its kind of a weird one. I had an ear plug temporarily a few days ago and about 30 seconds of ringing after. That was easy to tell it was in the ear and seemed like tinnitus. I still had the ringing in head as the ear was ringing.
     
    Invisible Woman likes this.
  17. Joeblow604

    Joeblow604 Established Member (Voting Rights)

    Messages:
    36
    Location:
    Canada
    My first 2 GP's were useless and ended up going about 4 years without one altogether at one point. The one I have now is new and doesn't seem to do much either. I literally emailed him every 2 weeks for 3 months now telling him its not better and needs investigation. I've had my sister call to express her concern and all that amounted to was basic blood tests. Next appointment I will bring in my caregiver and see if that gets me anywhere. Last year it took over a month, 5 hospital visits and 3 mediclinic visits to get help with a severe uti. My brother in law recently was sick over a year with ME symptoms with almost no investigation the whole time. Finally took my sister to have a major freak-out, demand a CT scan which they reluctantly agreed to, and turned out to be a brain tumor the size of plum causing the symptoms. Our medical system is completely broken and especially so with an ME label.
     

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