A Few Facts About Vestibular Disorders….with comments about me.

VEDA-BAW Poster-390163-WEB-1

Top Ten Facts about Vestibular Disorders      (This list is put out by VEDA.  The comments in bold italics are by me, all about me.)

  1.  The vestibular system includes the parts of the inner ear and brain that process sensory information involved with balance.  (however, your balance is controlled by your vestibular system, your vision and your sense of touch….but mostly your vestibular system.)
  2. Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives.  (I remember my first vertigo attack when I was 30.  However, I had balance issues long before that, most likely caused because I had severe ear infections in my teens.)
  3. Vestibular disorders can be caused by disease, injury, poisoning by drugs or chemicals, autoimmune causes, traumatic brain injury, or aging.  Many vestibular disorders occur from unexplained causes.  (We don’t know what caused mine.  *shrug*)
  4. Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation), imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting, hearing loss, anxiety, and cognitive difficulties.  (I just want to say that tinnitus can be a LOT more than just “ringing” in the ears.  I rarely hear ringing.  I normally hear buzzing, banging, roaring…all kinds of noises, I know one woman who hears music….”ringing” is just an easy way to explain it.  A lot of these symptoms are easy ways to explain them.  Your vestibular system is kinda complicated.)
  5. Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period several years before receiving an accurate diagnosis.   (very sad but true.  For a long time when I had vertigo attacks the doctors had no idea what was happening, I admit I probably didn’t describe it very well.  I remember once I had to have IV fluids because I was so dehydrated, my doctor was convinced I had food poisoning.  When I was finally diagnosed with Meniere’s disease it was a fluke.   I had been to the ER because I had been throwing up for over 12 hours and the doctor there said I was having vertigo and needed to see an ENT, this was the first time I heard the word, “Meniere’s”.  I was not diagnosed correctly.  The doctor didn’t do any test on me.  I could have had a brain tumor for all he knew.  Years later after a battery of testing at Duke, it was determined that I do have Meniere’s, but I also have other vestibular disorders.)
  6. There is no “cure” for most vestibular disorders. They may be treated with medication, physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
    In most cases, patients must adapt to a host of life-altering limitations.  (That’s a huge statement…there is NO CURE for MOST vestibular disorders.  I personally have had at least some type of all of the treatments mentioned…of course they are being very broad in saying what kind of treatments they are, but I use medication, have had physical therapy, and probably will again, I have extreme lifestyle changes…you would not believe how my life has changed…. I’ve had surgery many times, and I’ve had positional maneuvers…..whew…I will probably have more treatments in the future… at least I hope so, I’d like to feel a bit better than I do now.)
  7. Vestibular disorders impact patients and their families physically, mentally, and emotionally.
    In addition to physical symptoms such as dizziness and vertigo, vestibular patients can experience poor concentration, memory, and mental fatigue. Many vestibular patients suffer from anxiety and depression due to fear of falling and the loss of their independence.   (Most people do not understand how a vestibular disorder can cause so many cognitive issues, but it does.  With Meniere’s I’m not just afraid to fall, I’m afraid of having a vertigo attack in public…. this is horrifying.  I no longer fear the loss of my independence… I’ve lost it.  I can’t drive, I can’t go out alone, I use a walker, I can’t cook (it’s too dangerous with a balance disorder), I have a very hard time picking things up off the floor, I can’t take a shower, or bath without someone near by, just in case (often someone has to help me…. I don’t talk about things like this most of the time, and I often push through a lot of things when I’m around other people, but I pay for it later.)
  8. Common vestibular disorders include benign paroxysmal positional vertigo (BPPV), Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine.  (personally I have 3 of the vestibular disorders mentioned here.  I have BPPV, Meniere’s Disease, and vestibular migraines.  I also have an unknown vestibular disorder….one that is causing me a lot of problems but the symptoms do not fit in with the other defined disorders.  I will hopefully be going to John Hopkins in the not too distant future to try to find out what this unknown vestibular disorder is and maybe how we can treat it.)
  9. In the US, medical care for patients with chronic balance disorders exceeds $1 billion per year.  (I have to admit, I always wonder where they get these numbers and what they include.   I have to say the treatment of my vestibular disorders has been extreme.  We are very lucky we have insurance.  Of course, insurance doesn’t cover everything.   To give an example of just how much one thing cost…. I had a vestibular illness take my hearing and cause me to get cochlear implants, they cost over $100,000 each.  That’s a lot of money.  Of course, most people with vestibular illnesses do not lose their hearing.  I’m a bit rare.  heh… but aren’t I always *wink*)
  10. The Vestibular Disorders Association (VEDA) is the largest patient organization providing information, support, and advocacy for vestibular patients worldwide.  (VEDA has been a go to place for me to find information.  If you want to know more about a certain vestibular disorder, I suggest going to their website. http://www.vestibular.org)
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5 thoughts on “A Few Facts About Vestibular Disorders….with comments about me.

  1. I’ve been having chronic vertigo for over a year too. I am constantly swaying and the room spins anytime throughout the day. I have lost my job, friends etc, doctors told me they are sorry they can’t help anymore. It’s really tough to have this on top of my already existing depression. I hope one day we would find a cure. Huggggg

    Like

    • Faith, I’m so sorry you have to go through vertigo and depression. The doctor’s have said the same to me. I’m trying to go to John Hopkins’ to get another opinion..maybe??
      I understand the depression too, and a vestibular disorder can make it worse.

      You are not alone.
      One moment at a time….that’s the best we can do.
      Healing thoughts your way.

      Liked by 1 person

    • Elisa, Why are you recommending that I spin around 20 times every day?
      I may be misunderstanding, but did you read the parts about me?
      I have full rotational vertigo almost every day.
      I live with constant diseqilibrium.
      I have opsilopsia……
      At present time I’m going through the process to soon kill my balance center, to get some relief.

      This post is not just about vertigo, it is about many different things that vestibular disorders do to people. I did not write the list, I only put in my personal comments.

      Are you suggesting normal people should spin around 20 times a day?
      I described vertigo once as….remember the feeling you got when you were a kid and spun around and around and you got all off balance for a little bit and it was funny? Imagine that not stopping. Suddenly it isn’t funny anymore, it’s horrific and you are very sick.
      So spinning around 20 won’t work, it’s over in a few seconds, I assume you have vertigo, you know most of the time real vertigo last much longer.

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