Have you ever had an illness that most people don't understand? - eviltoast
  • onlylonely@lemmy.world
    link
    fedilink
    arrow-up
    18
    ·
    edit-2
    1 year ago

    I am living with chronic vertigo. I don’t know if it counts as an illness, but having this condition has made day to day living rather difficult. I feel strange all the time, there’s this constant swaying sensation, my head feels like it is wrapped in layers of gauze and on really bad days even my vision appears clouded. I can’t stand for prolonged periods when even sitting down doing nothing much feels like a drag.

    I appear outwardly fine though, and even my family members forget that some basic actions that they think nothing of no longer come with ease for me. Everything I do, even holding onto, say, a plate, when I am doing the dishes, I am doing it with utmost deliberate effort because the internal swaying sensations I feel have me thinking I am going to tip over any moment and I will end up dropping whatever I am holding.

    • Call me Lenny/Leni@lemm.ee
      link
      fedilink
      English
      arrow-up
      4
      ·
      1 year ago

      If seizures count as an illness, vertigo definitely does. I don’t get vertigo but I got mildly irritated once when someone was behind in the DVD clearance section of Walmart once and said “they need trigger warnings for vertigo now? What has society come to?” (it was a racing movie with lots of excessive dutch angles). I bet the whole aisle got distracted by my attempt at explaining sometimes these additions are just appreciated if not for some people being so obsessed with media freedums that they forget the human body exists.

    • rivalary@lemmy.ca
      link
      fedilink
      arrow-up
      4
      ·
      1 year ago

      I work with a guy who suddenly developed this in the middle of a call. I had to help him back to the office, stopping so he could puke a couple times. He was gone for a while and I don’t think he ever got rid of it.

      • MrEff@lemmy.world
        link
        fedilink
        arrow-up
        4
        ·
        1 year ago

        Unlike the othe comment, this DOES sound like it could be BPPV, where something like the epley maneuver would work. Typically we would use the Semont-plus maneuver (same idea, slightly different). Or there is a fun half somersault maneuver the person could try on their own.

        Bppv will be brief but intense episodes lasting seconds with lasting nausea for minutes and exasterbated by head movements. You will also see their eyes jumping or flicking (nystagmus).

    • Anbalsilfer@lemmy.ml
      link
      fedilink
      arrow-up
      3
      ·
      1 year ago

      Sympathies. Chronic vertigo is horrible, especially when it leads to nausea. Hope you find an effective treatment soon.

      • MrEff@lemmy.world
        link
        fedilink
        arrow-up
        6
        ·
        1 year ago

        The epley maneuver is to treat BPPV- where an otolith becomes dislodged and then finds its way into a semicircular canal (normally the latteral canal). If it was causing vertigo it would have to be the posterior canal. Not to say it isn’t possible, but it is the statistically least common canal to happen in. Not only that, but the epley wouldn’t treat it. Even then, this strongly doesn’t sound like BPPV, whose episodes would last seconds to minutes. If the episodes are lasting minutes to hours it is a short list of other possible things. best case this is vestibular migraine of it was vestibular related. More likely this is central involve ment and the person needs to see a neurologist. I have seen patients like this before for balance accessments. We will do the testing on them(VNG and caloric testing), but then have to tell them to go to a different department because it isn’t part of the vestibular system causing the problem. I would push to see an ENT/neuro/PCP sooner than later because worst case is it is a developing vestibular schwanoma (non cancerous tumor) and the sooner the better to take care of it or at least monitor it.

        • Call me Lenny/Leni@lemm.ee
          link
          fedilink
          English
          arrow-up
          2
          ·
          1 year ago

          Fun fact: The director of Mario Kart 8 had vertigo so bad that the rest of the crew working on the game used him as a test subject for the game to see when a level’s road was too twisty.

        • MrEff@lemmy.world
          link
          fedilink
          arrow-up
          1
          ·
          1 year ago

          After rereading this in the morning/afternoon and not late night I realized my mistake. BPPV is normally the posterior, more infrequently the anterior, and to be true up/down vertigo only it would have to be both canals at the same time. The vestibular organ is odd. Either way, this whole scenario doesn’t even sound like bppv (peripheral) and is most likely something up line in the brain (central).