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Brain Eels?

Discussion in 'Your Living Room' started by Aberdeen, Oct 25, 2019.

  1. Aberdeen

    Aberdeen New Member

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    I was diagnosed with Meniere's almost 3 years ago after about 2 months of dizziness, visits to several specialists, and a dozen tests.
    I was put on a diuretic and everything seemed stable for the last 2.5 years. A few minutes of dizziness here and there, but nothing like what I had experienced when I started.

    I'm now 4 weeks into another major attack where I've only had about 4 hours of complete relief and then it was back.

    My symptoms include:
    Aural fullness that comes and goes, sometimes including pain, sometimes it just feels like someone's trying to inflate a balloon inside my ear canal.
    Tinnitus that's worse in the left than the right. It's always present, but right now sometimes gets so loud it's hard to hear anything else. And sometimes it's not the high pitched electronic whine, but sounds instead like someone's playing my eardrum like a kettle drum.
    (Hearing loss that hasn't changed in a way that's obvious, but we haven't tested since the original diagnosis.)
    And...
    I never had a better term for it than dizziness. But I kept trying to say: It's not vertigo the way I understand it. I don't feel like the room is spinning. I have a little bit of balance issue, but haven't had any falling episodes. It just feels like...
    I finally came up with an analogy: Like there are millions of microscopic electric eels zapping my brain constantly.

    A couple weeks ago, my ENT prescribed a low dose of valium to try to calm things down. And... I've had some limited success with it. While I'm taking it, it seems to:
    Decrease the aural fullness episodes
    Lower the volume on the tinnitus (and I have only had the high pitch version while on it)
    and... It puts the brain eels to sleep.
    But. But then, when the brain eels are asleep, I can pinpoint the actual vertigo happening. It's not a high-speed spinning sensation, but more like a slow sliding rotation.
    (And the 4 hours that I felt like a real human were the morning after I took valium the previous afternoon. But then around lunchtime I had one of the worst upticks in symptoms ever.)

    Has anyone else ever experienced the sort of brain buzzing sensation that's not really vertigo but maybe dizziness is the best word to describe it? It's so hard to explain to the ENT.
     
  2. Joney

    Joney Active Member

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    I’m not sure if it’s the same thing, but I describe it as if someone took you by the shoulders and gave you a good shake. What you’re left with is a head buzzing. The room isn’t spinning, you don’t necessarily feel off balance, your head just feels off.
     
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  3. Aberdeen

    Aberdeen New Member

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    Oct 25, 2019
    That sounds right. It's so hard to describe because there just isn't vocabulary for it. When it's happening at its worst, I can't work. When that part subsided, even though the tinnitus was still pretty loud and there was more classic (room spinny type) vertigo - I could at least do my job if I was sitting down. The buzzing type feeling, though, keeps me from being able to think, and all I want to do is curl up in a ball and hide, and I can't teach like that.
     
  4. Nathan

    Nathan Well-Known Member

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    I had anticipated a horrific thread concerning rasping parasites eating their way out from your brain via your ears. Or something else equally as grizzly.

    Disequilibrium?

    Emphasis "buzzing", nay.

    At times I do however experience what could be described as Brain Ape, though.
     
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  5. Bonlyn

    Bonlyn Active Member

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    Yes, I agree with Nathan. Doctors would probably use the term DISEQUILIBRIUM. I have been experiencing that non-stop for almost 6 months now. :eek:

    But brain eels sounds more intriguing.
     
  6. Pupper

    Pupper Active Member

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    "I finally came up with an analogy: Like there are millions of microscopic electric eels zapping my brain constantly."

    I've never had that. No buzzing feeling. Very sorry for your problems starting up again.

    When it's not true rotational vertigo, I say dizzy, or "unsteady". I tell people it's like putting on someone else's prescription glasses. Or walking around with reading glasses on. Everyone can relate to that. "Disequilibrium" is a pretty expensive word and you may get your ass kicked for saying it in certain parts of Texas.
     
  7. teesdale

    teesdale Active Member

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    Good one Pupper. That is what it feels llike to me as well. The first 25 years or so with this thing it was the periodic crazy vertigo. The last 5 has been like walking around with someone else's glasses on. I can't decide which is worse.
     
  8. Onedayatatime

    Onedayatatime Active Member

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    One of the problems with this beast is it is usually progressive. Certainly true in my case. You take steps to remedy the initial symptoms, you succeed and figure you have it under control and then whammo, you get hammered as the disease ramps up. JOH and low salt kept my dizzy/vertigo in check for a year. As time progressed LOSO and JOH failed to suppress my symptoms. I still continued them fearful that if I stopped my condition could even worsen. Unfortunately for me, AV's were of no benefit. I was side tracked for 8 months on another unrelated health issue and just had to live with the vertigo. The symptoms kept getting worse. Eventually my ENT found another solution. Temporary or permanent only time will tell. My point in this ramble is that I don't believe we are ever totally finished with this beast. No more so than we are with correcting our vision once it starts to fail. Even if you find a permanent solution, this usually involves long term management (prescriptions).
     
  9. Pupper

    Pupper Active Member

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    OneDayatATime. I wouldn't want any newbies coming here and getting the impression that the vertigo aspect of MM is progressive. i.e. Gets worse and worse. That's not often the case. Usually...usually, the vertigo starts worse, then over the years lessens in its severity.
     
  10. Onedayatatime

    Onedayatatime Active Member

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    Mine did not. For me, frequency of vertigo attacks increased over time. Everyone is different.

    Perhaps the difference between MAV related vertigo and Menieres related vertigo??? Your guess is as good as mine.
     
  11. Dnrpn

    Dnrpn Member

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    I absolutely get brain buzzing, and that’s how I explained it to my docs lol. It’s like it’s hooked up to electricity. The buzzing is not just a noise, it’s a feeling in my head. Same as you, can’t concentrate and feel totally off. I became dizzy after a year and that progressed to feeling like I was still moving after I’d stopped walking or driving. Still buzzing through it. Antivirals have definitely lessened everything. Try them!
     
  12. Pupper

    Pupper Active Member

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    Simplistic.

    There are general patterns for this disease. (More accurately a syndrome). For most, the vertigo diminishes over time, in frequency and intensity. Though of course it's not a smooth decline and exceptions abound.

    For those who've newly acquired Meniere's, I'd like to emphasize intensity. Those intense, 75mph, 10 hour spinning attacks every 2 weeks? Or whatever nightmarish sh*t is hitting you. Don't worry, that's not going to last. Those attacks give a good beating to the 8th nerve until it loses its power to wreak the havoc it once did.
     
  13. Nathan

    Nathan Well-Known Member

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    Sensations of the brain—an organ void of nociceptors—such as buzzing & zapping suggests, however I could be wrong, the activation of nociceptors near the dura & pia, which, in turn, points more so towards vestibular migraine, rather than Ménière's. Or a combination of the two.

    It's possible to suffer from both Ménière's & vestibular migraine.

    The above sentence is long. And horrible *chuckles… It's been a long 48 hours & I haven't slept. Please excuse any possible typographical errors, grammatical errors, spelling mistakes, & general indeciph…

    …indeciphuuur

    …able

    …indecipherableness

    I'm going to bed.
     

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