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Tinnitus Poll : Making a distinction of subtypes

Discussion in 'Neurological/Cognitive: Brain Fog, Concentration' 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

    28 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

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

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

    17 vote(s)
  6. f) Permanent tinnitus

    8 vote(s)
Multiple votes are allowed.
  1. feeb

    feeb Senior Member (Voting Rights)

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    London, UK
    I mentioned this in another thread, but I have two very distinct types of tinnitus. One is the "normal" continual tinnitus related to my hearing loss, which is the ringing/buzzing/whining/etc noise that one normally thinks of when thinking about tinnitus. I've had that all my life and it has nothing to do with M.E. My understanding is that this kind of tinnitus can be exacerbated by stress, and it's also more noticeable in quiet situations (e.g. when you're trying to sleep!). The sounds can be simple or very complex, often have directionality, and are very clearly just sounds, or perceptions of sounds.

    The other type I have is very strongly correlated with M.E. symptom severity, is unilateral, lasts only a few seconds at a time (although it can happen multiple times in a day), only occurs when I'm in an upright sitting or standing position, and involves a physical pulsing sensation as well as a ringing sound. The pulsing is much faster than my heartbeat, so I'm pretty sure it's not pulsatile tinnitus.

    Interestingly, I can contract my tensor tympani muscles at will, which produces a rumbling sound and a physical pulsing sensation in my head. The pulsing sensation feels a lot like this second kind of tinnitus (although the sound is very different), which makes me wonder if there's some kind of muscle spasm going on as I enter PEM. Fasciculations and twitching aren't unknown in M.E. and perhaps in my case this tinnitus is just one more manifestation of that.

    Here's a paper on BMC about people who can deliberately contract their tensor tympani. You'll notice they mention that it stops you being able to hear properly: https://journalotohns.biomedcentral.com/articles/10.1186/s40463-016-0182-y

    Edited to add: This pulsing tinnitus has been really bad for me this past week (I've been quite unwell), and I no longer think the tensor tympani thing could have anything to do with it. The pulsing sensation is roughly in the area of the paretial bone on the right hand side of my cranium. It's a distinctly different place to a spasm in my TT muscles.
    Last edited: Jul 14, 2019
    ladycatlover likes this.
  2. Forbin

    Forbin Senior Member (Voting Rights)

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    FWIW, there seems to be a thing called a "vestibular migraine" which can cause balance problems, tinnitus and some other symptoms, without necessarily producing a headache. Whether this is related to true migraine, or is more of a metaphor, I'm not sure. One website says that symptoms occur when the vestibular artery widens and blood flow increases. Another site claims it's due to vasoconstriction.

    I've seen some suggestion that "vestibular migraine" is a controversial name, if not diagnosis. Still, I wonder about a possible nexus between ME symptoms and some kind of general disruption of "vascular tone."

  3. JemPD

    JemPD Senior Member (Voting Rights)

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    I have had the intermittent tinnitus lasting for seconds, since prior to developing ME. The continuous type didnt start until the day i tried sertraline - when it came on a few hrs after taking the first tablet. That may be pure coincidence of course. yrs after stopping them it's still there.

    The continuous type is much much louder when i'm bad - but it's difficult to tell whether the tinnitus itself is worse, or whether my hypersensitivity to all things 'sensory' when i'm at my worst simply makes it feel worse/makes my experience of it worse. For example when at my worst even dim lighting seems really bright & painful, but the light itself isnt actually any brighter, only my experience of it.
    Last edited: Jun 27, 2019
    ladycatlover, mariovitali and shak8 like this.
  4. MeSci

    MeSci Senior Member (Voting Rights)

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    Cornwall, UK
    You may have given me a 'light-bulb' moment! I recently started supplementing l-glutamine again, and within 3 days started getting a blocked ear (right one this time, although it feels as though the left one is slightly as well). I decided this morning, before seeing your post, to lay off the l-glutamine for a while.

    I seem to have alleviated the blocked ear by adding sodium bicarbonate in water using a squeezable applicator a few times a day.

    I've also started getting slight headaches (and I did have migraine-type headaches for a while previously) - wonder if that could have been due to l-glutamine too?

    I am a long-term vegan, and sometimes get tinnitus.
    ladycatlover and mariovitali like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    I would have chosen an option for always, not necessarily months. It's been there for years but I couldn't tell when it began. I also think it's both ears but frankly it's hard to tell.

    I also have a feeling of pressure and warmth in my ears, pretty much constant but sometime it's more noticeable. ENT said it was probably anxiety. Did not bother asking questions to test that hypothesis, just flat out made that statement. Waste of time.

    In my case it's constant. I can even identify the frequency, around 17khz or so. I think tinnitus is supposed to vary a bit whereas mine is really stable so no idea if it's that or something else like it.

    I also played drums in a punk rock band for 10 years so... there's a possible alternative explanation there.

    I've had labyrinthitis, or I think anyway. It certainly seems like it but I didn't have a GP at the time and I'm not even sure if there's much to do when it happens anyway so I didn't bother getting it checked out.
    sea, ladycatlover, MeSci and 2 others like this.
  6. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Metro Vancouver, BC
    I can't answer the poll as I do have tinnitus, however, it has nothing to do with ME/CFS. Mine is due to my love of very loud music. Also, my tinnitus is permanent. I've had it for the past 30 years at least.
  7. mariovitali

    mariovitali Senior Member (Voting Rights)

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    One more thing that would give me tinnitus is Whey Protein
    ladycatlover and MeSci like this.
  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    My tinnitus is not days or months but is persistent bilateral sound that hasn't stopped in years. Some forty years ago I think it was off and on.
  9. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I had tinnitus for the first 20 years of ME (in both ears and intermittent for days at a time) but rarely now.

    When I get it now it is just in the left ear and for short periods of time (seconds to minutes)
    ladycatlover and MeSci like this.
  10. Milo

    Milo Senior Member (Voting Rights)

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    I have tinnitus since getting sick, and it is a barometer if you will of how i am doing and whether i should back off activities and lay down. If i wake up with it, it is bad. It is link to that hangover feeling in my head. If i ignore it and continue activities, the tinnitus will get louder and louder.

    I woke up today with the tinnitus in one ear. I did a bit of cognitive work, brushed my teeth and got up, and now it is in both ears. I have feeling of lactic acid in my legs. Back to bed, it will be a long day.
    ladycatlover, MeSci and Trish like this.
  11. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I have had tinnitus in both ears for twenty or more years. It was caused by something else, after I had had ME for several years.

    It does get worse when I am feeling worse.
    ladycatlover and MeSci like this.
  12. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    North-west England
    Had tinnitus in left ear since I first got ill in Spring 2012. It was how I knew something was wrong because I wouldn't have symptoms consistent with ME for another few years. Rather I had tiredness, some generalized pain, and the tinnitus.

    It became worse as I got more ill several years later, eventually leading to an ME diagnosis. It is very loud and causes me distress. I also have a feeling of fullness in this ear and some slight hearing loss centered on 6000 Hz. At the moment I have had a spike in the volume for a month or so.

    Around 1.5 years ago I started gettting pulsatile tinnitus. This too has been worse over recent months. I get it most later in the evening and especially when I am in bed changing position from vertical to horizontal, or rolling over. The annoying thing is that this should be investigated because it could be treatable. Pulsatile tinnitus is often related to changes in either blood flow or the blood vessels themselves. Unfortunately, doctors are terrible with dealing with patients presenting with tinnitus.
    ladycatlover, rvallee, diwa and 2 others like this.
  13. Barry

    Barry Senior Member (Voting Rights)

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    Bearing in mind it is my wife who has ME.

    She does suffer constantly from tinnitus in one ear, but not entering into the poll because I think it is inherently biased towards presuming a correlation with ME, with no way of the poll results correcting for that.

    My wife has had tinnitus from childhood, long before she ever had ME. Her guess, but only a guess, is that it could be the consequence of a severe ear infection she had in the same ear a while previously.
  14. mariovitali

    mariovitali Senior Member (Voting Rights)

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    Barry, i do understand your concerns about being "inherently biased towards presuming a correlation with ME". So far we have responses from patients who :

    a) post that their tinnitus is associated with symptom severity (i am one of them)
    b) post that their tinnitus has nothing to do with symptoms and their ME
    c) post that their tinnitus originates from some kind of trauma to their ears.

    This poll, even though being unscientific -we all know that- gives us a way to get a first, rough picture of what is going on in respect with Tinnitus . It is not scientific but it's a start.

    There may be ways to induce tinnitus (and perharps also increase symptom severity) to some ME patients. If this becomes a controlled study then we will know for sure.

    Dismissing things outright is not what we should be doing in my opinion.
    Last edited: Jun 28, 2019
    shak8 and Barry like this.
  15. feeb

    feeb Senior Member (Voting Rights)

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    London, UK
    One of the main things I'm getting from this thread is that tinnitus comes in almost as many different flavours and from almost as many different sources as there are different people. Which I knew anyway, but it's interesting to see it in practice!
  16. Rooney

    Rooney New Member

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    I have high pitch tinnitus, both ears for several months. (I've been ill many years). Went in for a hearing test just this week, but hearing is perfect. I was asked about loud noise exposure. It is thought I may have had a virus affecting the nerve. Soft music is a good distraction when alone.

    Fluid was found in sinuses so I'm trying antihistamines and Neilmed sinus rinse. No improvement, yet. I'm trying to track if it's just energy related, POTS related.

    So pleased to read it may not be permanent. Thanks.
  17. leokitten

    leokitten Senior Member (Voting Rights)

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    I almost never had any tinnitus before getting ME. Now after I would get loud and short bursts of tinnitus in one ear or both ears during or after overexertion... like clockwork. Lasts a few seconds to a few hours.

    Strict ketogenic diet greatly reduced tinnitus symptom though not totally gone. No more loud bursts but sometimes a low ringing for a few minutes during or after overexertion.

    When I tested introducing carbohydrates back in the tinnitus comes back to before after a few days (as well as all the other symptoms that have improved on it).

    Possible cause:

    Energy metabolism in cochlear outer hair cells in vitro.
  18. Kitty

    Kitty Senior Member (Voting Rights)

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    I've had tinnitus since before I developed ME (too many live gigs in the 70s – Cabaret Voltaire basically play 24/7 in my head!) It only varies if I have a cold, labyrinthitis, or after swimming when my ears are still full of water. I'd never connected it with ME, I didn't realise it was common among patients.
  19. mariovitali

    mariovitali Senior Member (Voting Rights)

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    This paper is quite interesting :

    The paper discusses that glutamate release is induced by cochlear damage and may result in excitotoxicity. I wonded if there are other routes of glutamate release, apart from noise exposure or ototoxic drugs.

    Also of interest are the roles of Acetylcholine, Dopamine, GABA and serotonin. Is it possible that disruption of these neurotransmitters along with problems in regulating glutamate catabolism results to microglial activation?
    obeat and rvallee like this.
  20. Rosie

    Rosie Senior Member (Voting Rights)

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    I voted that I haven't experienced tinnitus that I can recall. I've only experienced a sound that is like the tone of a telephone before you ring the number. And I get this very rarely and it only lasts a few seconds.

    I don't think I have ever had an ear infection either. My parents are experiencing going deaf as they age. My mother had complications due to something which caused one of her ears to go deaf a few years ago.

    I should add that I do get a thick feeling in my ears though as if there were inflammation.
    Last edited: Jul 13, 2019

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