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Tinnitus Poll : Making a distinction of subtypes

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


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)
  2. b) I have tinnitus that occurs in both ears (bilateral) and lasts for seconds

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

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

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

    23 vote(s)
  6. f) Permanent tinnitus

    21 vote(s)
Multiple votes are allowed.
  1. mariovitali

    mariovitali Senior Member (Voting Rights)

    Dear All,

    There has been a poll previously about Tinnitus. Interestingly i read that some people made the connection that tinnitus relates to their symptom severity. Looking more into this symptom i found that there are two types of tinnitus : The one that occurs in both ears and a second type where it occurs in one ear,named SBUTT (Sudden, Brief, Unilateral, Tapering Tinnitus).

    It is critical that we understand more about this symptom according to my research and i would be grateful if you can submit your response.

    Thank you.
  2. Forbin

    Forbin Senior Member (Voting Rights)

    I've had both c) and d), so I'm not sure which to vote for.
    DokaGirl and mariovitali like this.
  3. mariovitali

    mariovitali Senior Member (Voting Rights)

    Thanks i will change the poll to account for many responses.
    DokaGirl likes this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    My understanding from my ENT professor friend is that pretty much everyone experiences SBUTT at times. I certainly do and have done most of my life. I have also had high frequency constant tinnitus in my right ear since I was a teenager - maybe related to a major ear infection as a child. And I have had continuous bilateral tinnitus since going deaf about ten years ago, although it disappears when I have my hearing aids in and I am in an environment with some noise.

    And I don't have ME!
    coFi94, sea, ladycatlover and 10 others like this.
  5. mariovitali

    mariovitali Senior Member (Voting Rights)


    Thank you Professor Edwards,

    If you recall, i kept a log for 434 days for my symptoms and then these entries were analysed to extract any possible associations. Tinnitus (SBUTT type) was identified as a key symptom that would signal further issues. Neck pain to a specific point was associated with POTS.

    Of course we must keep in mind that these are observations of one person. I would like to identify the subtypes and the next question will be the frequency of these manifestations (EDIT : I believe that this may be an important differentiating factor). As discussed in my first post in this thread, there are ME patients that may have found a connection of tinnitus with their symptoms.

    I believe that we must investigate this fact further.
    Last edited: Jun 27, 2019
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    My unilateral tinnitus started in early March of this year. I have not had it before. I've had ME for 34 years.

    Thank you @mariovitali for your research.
    mariovitali likes this.
  7. Andy

    Andy Committee Member

    Hampshire, UK
    I've had constant bilateral tinnitus for as long as I can remember. I have the impression that it gets louder the less energy I have but that might be a function of reducing the amount of input from other sources to reduce my cognitive load - so I might move to a quiet room and then my tinnitus seems louder, but it's likely it's at the same level and I just have nothing else distracting me from it.
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    It's mostly just one ear, but I think I get it in both ears from time to time.
  9. Lisa108

    Lisa108 Senior Member (Voting Rights)

    Constant bilateral tinnitus here. Loudness increases with onset of PEM, like a (more than usual) sore throat.
  10. chrisb

    chrisb Senior Member (Voting Rights)

    I am going to opt out of the poll. I have fairly constant, probably mild, tinnitus in both ears, but have no particular reason to think it associated with ME. It seemsprobably milder than that suffered by other family members.
  11. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    Constant bilateral tinnitus of mosquito pitch for the last few years, never stops. Possibly started around the time I relapsed from very mild to severe but couldn't be sure.

    Seems to be worse when I'm more exhausted but I've been wondering whether it's actually the same but I'm noticing it more because either I'm doing less distracting activity then or because my brain is too tired to filter it out.

    Bizarrely it also gets worse while digesting a larger meal.

    I also have occasional SBUTT, higher-pitched and louder than the constant bilateral, but I haven't noticed any connection with other symptoms, it seems to be random so I disregarded it for the poll and only voted a).
  12. lansbergen

    lansbergen Senior Member (Voting Rights)

    I did and with overall improvement it slowly became less and now is disappeared.

    There is still something wrong in my ears that fluctates with other symptoms but no tinnitis anymore.
    ladycatlover and mariovitali like this.
  13. mariovitali

    mariovitali Senior Member (Voting Rights)

    I do understand but IMHO, tinnitus may not be that easily dismissable. Some thoughts below :

    1) Regarding myself, whenever i would supplement with L-Glutamine i would get severe tinnitus (SBUTT). Also the log i kept identified Parmesan cheese as a problem and apparently Parmesan is loaded with Glutamate :


    I believe the worst part is when i decided to stop eating meat for a month (large amounts of protein also induced SBUTTs to me) : For that period there were no SBUTTs but when i introduced meat again, i had a scary incident of SSHL (Sensorineural Hearing Loss). This is documented to one of my posts on Phoenix Rising

    2) Interestingly, my research suggests (as a hypothesis) that excitotoxicity might be the missing piece of the puzzle in the vicious cycle of ME/CFS (if such thing exists).

    3) I find several interesting associations of Kynurenine (more specifically Quinolinic acid) with the NMDA receptor (which is part of the machinery of excitotoxic events).

    4) Finally tinnitus may be a sign of excitotoxicity in certain individuals :

    Last edited: Jun 27, 2019
    spinoza577, rvallee and MeSci like this.
  14. mariovitali

    mariovitali Senior Member (Voting Rights)

    Regarding Quinolinic acid (QUIN) :

    Link : https://www.hindawi.com/journals/omcl/2013/104024/
  15. chrisb

    chrisb Senior Member (Voting Rights)

    Don't get me wrong. I do not dismiss tinnitus. It can be a profoundly unpleasant symptom. I do not dismiss the idea that for some it may be related to their ME. It is just that in my case I suspect that genetic factors are a stronger influence.
    spinoza577 and mariovitali like this.
  16. mariovitali

    mariovitali Senior Member (Voting Rights)

    Tinnitus and the NMDA Receptor :

    EDIT : I confirm that stressful situations would also induce SBUTTs

    spinoza577 likes this.
  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    I selected (e) as for most of the time it is not an issue for me, though occasionally I do hear what sounds like a whooshing blood flow with pulsing in both ears at times when I feel I might (or occasionally do) feint. This subjectively feels it is happening at times of low blood sugar (note, I am not diabetic).

    Also there are other random auditory symptoms at times when I am at my worse, but I feel it is not consistent or long lasting enough to warrant the label tinnitus.
  18. mariovitali

    mariovitali Senior Member (Voting Rights)


    May i ask if one of the "auditory symptoms" you mentioned resembles a brief (1-2 sec) blockage of hearing on one of your ears ?
  19. fossil

    fossil Senior Member (Voting Rights)

    I ticked a) but I get pulsatile tinnitus as well.

    @Peter Trewhitt, have you heard of pulsatile tinnitus?
  20. Maria1

    Maria1 Senior Member (Voting Rights)

    North England
    I don’t think I can describe what I have as Tinnitus. However, I do have a feeling of fluid in my ear which seems to increase when I have a spike in other symptoms. There is bubbling, popping and crackling. No wax so not that.

    My ME/CFS started 6.5 years ago and I had ear pressure problems on and off way before (I was a smoker for many years and put the ear problem down to that, along with frequent and prolonged throat infections).

    My ME/CFS symptoms have changed over the past years or so; all over pain and headache has become more debilitating. It feels as if there is extra fluid in my body which hurts. I say all over but it’s worse down my left side, the side where my ear pops and bubbles, also the side of my migraines. This fluidy pain is so bad lately I’ve been considering a GP visit but I can’t bear the feelings of paranoia that go along with seeing any doctor!

    Your research sounds interesting @mariovitali
    ladycatlover, rvallee and mariovitali like this.

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