Vertigo: A common problem that left one man teetering for months and months

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  1. JKC

    JKC New Member

    Thought some might find this interesting

    March 27, 2009. I was fine the night before. The little cold I’d had was gone, and I’d had the first good night’s sleep all week. But when I woke up Friday morning at 6:15 and got out of bed, the world was whirling counterclockwise. I knocked against the bookcase, stumbled through the bathroom doorway and landed on my knees in front of the sink. It was as though I’d been tripped by a ghost lurking beside the bed.

    Even when I was on all fours, the spinning didn’t stop. Lightheaded, reaching for solid support, I made it back to bed and, showing keen analytical insight, told my wife, Beverly, “Something’s wrong.”


    Anatomy of vertigo.
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    Anatomy of vertigo.

    Related story

    Understanding vertigo, and what to do if you have it
    Understanding vertigo, and what to do if you have it

    Nora Krug

    Some high-tech diagnostic tools often lead to a low-tech treatment: a series of careful repositionings of the head.

    Click here to subscribe.

    Click here to subscribe.


    The only way I could put on my shirt was to kneel on the floor first. I teetered when I rose. Trying to keep my head still, moving only my eyes, I could feel my back and shoulders tightening, forming a shell. Everything was in motion, out of proportion, unstable. I barely made it downstairs for breakfast, clutching the banister, concentrating on each step and, when I finally made it to the kitchen, feeling too aswirl to eat anyway. I didn’t realize it at the time, but those stairs would become my greatest risk during this attack of relentless, intractable vertigo.

    Vertigo — the feeling that you or your surroundings are spinning — is a symptom, not a disease. You don’t get a diagnosis of vertigo; instead, you present with vertigo, a hallmark of balance dysfunction. Or with dizziness, a more generalized term referring to a range of off-kilter sensations including wooziness, faintness, unsteadiness, spatial disorientation, a feeling akin to swooning. It happens to almost everyone: too much to drink or standing too close to the edge of a roof or working out too hard or getting up too fast.

    But according to the National Institutes of Health, “more than four in 10 Americans will experience an episode of dizziness sometime during their lives that’s significant enough to send them to a doctor.” That would be approximately 125 million of us.

    If it came with a soundtrack, vertigo’s would sometimes be a train’s wheels grinding and screeching on the tracks as the car turns and almost tips over. Other times it would be a treetop filled with the ruckus of rioting crows in a sudden windstorm.

    I remember feeling helpless and untethered, needing to reach out for something stable to steady me but finding that there was too much give in everything I sought. Vertigo is a carnival world and I was the Human Bumper Car. I moved without authority because the simple act of shifting my head’s plane threw me into chaos. But so did remaining motionless. I was never comfortable or relaxed, never at ease, at home in my world.

    But I was not alone. In part, that was because I had Beverly’s support and my daughter’s steady concern. I was also not alone because, as a study published in the Archives of Internal Medicine in 2009 noted, 69 million Americans age 40 and older, or 35.4 percent of the population during the four-year study period, had some form of vestibular dysfunction — a term that includes vertigo.

    When I was struck by vertigo, I had no idea it was such a common occurrence.

    I was also not unfamiliar with balance problems. In 1988, I contracted a virus that targeted my brain and left me neurologically disabled. Besides damage to my memory systems, abstract reasoning, word-finding and other cognitive powers, my brain’s ability to process information — including information necessary to maintain balance reliably — had been compromised. I’d had to walk with a cane for 15 years.


    Human balance is a multi-system operation. “It begins with a series of signals within the tiny balance organs of the inner ear,” according to hearing and balance expert Daniel Sklare. “These organs work with your brain’s visual system to give you a sense of your body’s position.” Other parts of the body — skin, joints, muscles — also relay balance information to the brain. All it takes to trigger a balance disorder is a malfunction in one of these delicate components. Researchers have identified more than a dozen different balance disorders, NIH reported in 2012.

    On that March morning in 2009, my primary-care physician thought my problem was the most common of those disorders, benign paroxysmal positional vertigo, or BPPV. He explained that “ear rocks” — small deposits of calcium carbonate, probably dislodged by the viral infection I’d caught the week before at the coast — had collected in the inner-ear canals of my right ear. Such debris, or otoconia, jitters at the least movement and sends all sorts of confusing signals through the balance system. Until it dissolved, I could expect the symptoms to persist. It could last two days or two weeks or two months, he said.

    It lasted five months. To be precise, by the time I’d seen the neurotologist — who spun me in an Omniax system chair, a diagnostic device that looks like a futuristic carnival ride or an apparatus for training astronauts to endure zero gravity — and the neurologist specializing in balance disorders — who sent me for an MRI of the brain and then left for a month’s vacation — and the acupuncturist, who was also a doctor of Chinese medicine, my vertigo had been going on for 138 days.

    And it wasn’t BPPV, reasonable though that initial diagnosis seemed. Beverly and I had gone home and researched it. We watched several YouTube demonstrations of the Particle Repositioning Procedure, or Epley maneuver, intended to relocate the otoconia. I’d lie supine on our bed with my head turned to the right and dangling dizzily off the edge into Beverly’s hands. After 30 seconds, she shifted my head to the left, waited another 30 seconds and helped me rotate onto my left side, face down, where I looked at her kneecap. When 30 more seconds passed, I slowly sat up and gathered myself for a minute, trying not to puke. Three times a day.

    For 69 days. Not that I was counting, but that was 1,656 hours of my life during which I had to walk with a cane, couldn’t safely manage the stairs, couldn’t drive, could barely endure being a passenger in a moving vehicle, fell in the grocery store while reaching for a package of paper towels, sagged to my knees while trying to walk along the street beside Beverly, couldn’t write or sustain focus on reading, grew lightheaded when tree limbs moved in a breeze or swallows changed direction in flight. Through all that time I felt so disembodied, while also feeling trapped inside my body, that I believed I was losing myself hour by hour.

    My vertigo had never been benign in any sense of the word; had never been paroxysmal, since it didn’t come and go; had never been a function of position; had involved more than simply vertigo; and had not been resolved by 207 repetitions of the Epley maneuver (nor by drinking ginger tea). As a result, we thought I might not have benign paroxysmal positional vertigo. My doctor agreed.


    After weeks of intensive testing — during which I had electrodes stuck deep in my ears, I was barraged by piercing sounds and by air puffed into my ear canals, and I was subjected to jerking/tilting floor platforms and those crazy loop-the-loops on the Omniax chair — I was given the diagnosis of endolymphatic hydrops. This condition, a fluctuation of the volume and concentration of fluid in the inner ear, can occur as a result of infection, allergy, tumor, degeneration of the inner ear, head trauma or unknown causes. In my case, the neourotologist thought the cause was a viral endolabyrinthitis — a virus attacking my inner ear. He felt it might be a reactivation of some earlier virus in my system, most likely the herpes zoster I’d contracted in 2002, when I had chickenpox for the first time at age 55.

    Since the neurotologist prescribed a potent antiviral drug, Valtrex, I wanted to consult my primary-care physician again before taking the medication. He was skeptical of the diagnosis. After all, besides vertigo I had none of the classic symptoms of endolymphatic hydrops. My symptoms didn’t fluctuate according to position or activity, I had no hearing loss, no ringing or buzzing or feeling of fullness in the ear.

    Technology and medical science confirmed that I was dizzy. They still didn’t know quite why.

    On Day 95, I consulted with the neurologist, who talked about strokes in the brain stem and tumors and said, “Let’s have a look, so we can rule things out.” On Day 97, I had an MRI of the brain. On Day 101, my 62nd birthday and the day before the neurologist was heading off for a vacation, he called to say there was no sign of anything worrisome, though there might be a slight area of contact between a blood vessel and nerves of the inner ear. He thought I was in no danger unless I fell, so I shouldn’t fall. We’d meet when he returned. He prescribed a tiny dose of Valium twice a day to dampen nerve response in case there was that contact with a blood vessel.

    At 8:09 on the evening of Aug. 12, Day 138, Beverly and I were sitting on the couch in our living room. It had rained all day. I’d had my ninth acupuncture treatment the day before. I was reading, slowly, Willie Morris’s memoir about his friendship with James Jones, when there was a great burst of outward pressure inside my head. It plugged my ears. I dropped the book, opened my mouth wide, put both hands to my ears. In two seconds, the pressure reversed, vanished.

    “Did something happen?” Beverly asked.

    Delighted that I could still talk, move both arms and shift position on the couch, I said, “I don’t think it was a stroke.”

    She looked at me for several seconds and smiled. “Stand up. I wonder if your vertigo is gone.”

    I did. It was.

    Twelve days later, when I told the neurologist what had happened and that, except for some residual lightheadedness, the symptoms hadn’t returned, he said, “You were in such bad vestibular shape. I’d like to take credit for this, but I don’t think I can.”

    The vanishing, he felt, confirmed a theory he’d been considering: intracranial hypertension, a buildup of pressure inside my skull, brought on by a virus. A buildup of viral material in the spinal fluid plugged the holes through which the fluid normally drains. That led to a buildup of fluid and pressure, which caused the symptoms.

    “So, it came unplugged on its own?”

    “It’s a pretty elegant theory.” He smiled.

    The symptoms haven’t returned. They’ve looked in on me occasionally, teasing — wooziness when I move my head quickly, lightheadedness when I look out the window or see great blue herons land in a swaying cottonwood tree — but that’s all. It’s been four years, eight months and 10 days.

    Skloot’s most recent book is “Revertigo: An Off-Kilter Memoir.”
  2. nicmger

    nicmger New Member

    What I found most interesting about this post is that the person had said that after an MRI they said that he had a blood vessel that touches the ear nerve.

    When my first CT scan was read (I can't have a MRI) the radiologist report said that my left jugular is significantly more dominant than the right (everyone has one more dominant but my difference was significant). He also noted that I had a spur off of that vein that is right against the nerve of the ear. His report indicated that if there was sinus or any inflammation that would cause ringing, hearing loss and vertigo. (Left is my bad ear)

    Now, my ENT at the time, following two neuro/ENT's all discounted that part of the report and said that it was not relevant. At the time I had much more significant sinus issues (have gotten them somewhat under control) but the CT scan also showed that the majority of my sinus was draining behind the ear...the bad ear.

    Just thought it was interesting that I had a radiologist report similar findings. (Of course doctors disagreed - one actually said "that should not have been included in the report".)
  3. zotjen

    zotjen New Member

    I'm surprised it took 97 days for this guy to be sent for an MRI.
  4. nicmger

    nicmger New Member

    Not me. I had to push for the MRI (only to find out I can't have one and have to settle for CT scan with contrast). Once the vestibular testing ruled out everything else my doctor was "content" with leaving it at that.
  5. GLA

    GLA New Member

    Was this truly 'vertigo' or was he simply dizzy? When I have a true vertigo attack, I don't watch TV, walk around, and I certainly don't read books or type on my computer. I'm completely incapacitated. Hell, my eyes wouldn't be able to focus enough to do any of these things.

    And I'm not trying to discount his experience. I'm sure he was pretty miserable. I just think his definition of vertigo and mine are very different.
  6. KennedyLane

    KennedyLane New Member

    "The vanishing, he felt, confirmed a theory he’d been considering: intracranial hypertension, a buildup of pressure inside my skull, brought on by a virus. A buildup of viral material in the spinal fluid plugged the holes through which the fluid normally drains. That led to a buildup of fluid and pressure, which caused the symptoms."

    Is this something that really happens? I know that intracranial HTN can cause dizziness, but can't that be measured with a spinal tap? Also, aren't there generally eye issues associated with this problem? And what about the fact that he had to walk with a cane for 15 years. Something sounds weird here like there is something else going on for this fellow.
  7. Donamo

    Donamo Guest

    Yes, I agree here. Vertigo for me means sitting on the toilet with a big bowl on my lap. For hours.

    It was an interesting read. Seems pretty dumb to not have tried the Valtrex when there were viral episodes in his life. It is so hard when we laymen have to depend on the doctors, the 21st century medicine men.

    A lot of people are skeptical of Stephen Spring because he is a lawyer, not a doctor, but I don't see that as much of a negative. He certainly knows an awful lot about the inner ear and hydrops and the immune system.

    Most, all actually, of the valuable information I have learned about such things have come from this forum and a few other sites, mostly here.
  8. nicmger

    nicmger New Member

    And perhaps it is BECAUSE Stephen Spring is not a doctor that he had an open mind to try to figure something out. Too often, in my experience, doctors (any doctor, not just for Meniere's) gravitates towards something they believe and agree with. For example if a med doesn't list something as a side effect and/or said the side effect is rare, a good portion of doctors will not truly listen to you when you describe what you experience because "it shouldn't" or "rarely" happens. In my experience, doctors are good treating the majority and struggle with treating the minority whose symptoms do not follow the norm. Just my experience.
  9. Vicki615

    Vicki615 New Member

    I thought SS was in real estate management, not a lawyer.
  10. redwing1951

    redwing1951 New Member

    I wonder too about the vertigo vs being dizzy. I was dizzy everyday for a year and still was able to function although I was miserable. With vertigo I was not able to function for 24 to 48 hours.
  11. nicmger

    nicmger New Member

    I don't disagree. For sure in my vertigo attacks I am not able to read a book. LOL That said though, the first two weeks of April while I "only" went full spin/vertigo twice every single day I was way off balance, my eyes were moving to the right in between blinks then back to center, nausea ongoing. Woke up one day and that was gone. Still had another short major vertigo spin a couple of days later.

    I just thought it was interesting the concept of the blood vessels that potentially touch the ear nerve in people. In my case made worse during inflammation and how it can cause the same symptoms - and yet doctors (mine) don't agree with the theory or even that it could contribute to my issues. :)
  12. KennedyLane

    KennedyLane New Member

    Nicmger, the condition is called microvascular compression of the 8th cranial nerve. It is a very controversial syndrome as up to a third of all "normal" non-symptomatic people have a blood vessel in contact with this nerve.

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