A Party in my Head
Fully seven percent of the population is regularly troubled by dizziness. It’s not a life-threatening condition, but it has a significant impact on quality of life. Some types of dizziness show up without warning and are extremely intense, with attacks lasting several hours before fading away. When this happens, you don’t dare drive a car, go shopping, or even leave your house. You can look this up, if you don’t believe me. And dizziness has so many possible causes. I speak from personal experience: one by one, I’ve investigated them all.
Party in my head.
We owe the fact that we can stand up and move around without dizziness to our amazing vestibular system, a gift from Mother Nature. Until relatively recently, though, that system was in my case far from amazing. And it took years before I was able to learn why. It wasn’t until September 2007, after 14 years of searching, that a doctor discovered the true cause of my trouble. All human beings, it turns out, have tiny calcium crystals (technically called “otoconia”) in our ears that enable us to stand erect without difficulty. But the crystals in my ears might as well have been snorting crystal meth, for all the good they were doing me.
From pillar to post.
For years, I was offered incorrect diagnoses by a parade of specialists. Was the root cause of my problem hyperventilation? Did I have a brain tumor? After I underwent extensive brain-function testing, there was talk of Ménière’s disease, of Ménière’s syndrome, of “lazy” vestibular organ and a “deviation” and poor circulation in my vestibular system. Or maybe it was just a hormonal problem, or fatigue, or stress, or something wrong with my neck.
The first person to come up with a suggestion that made actual sense was my veterinarian. Because, believe it or not, it turned out my dog had the same condition! The vet had a good laugh when I told him about my original diagnosis of hyperventilation. Yes, I did hyperventilate, that one time, but surely that was just a panic reaction to my first bout of dizziness. That first doctor showed me photos of terrified patients, clinging desperately to a table leg, their only lifeline in the middle of a vertigo attack. He was the one who advised me to solicit other opinions.
After the scanner and the brain-function test, I wound up seeing an ear, nose and throat doctor (ENT) for a while. He never had a lot to say, just ran me through the usual battery of diagnostic tests and, every time, asked me if I could still hear okay. Over the next few years, I met a few more doctors cut from the same cloth. They’d write me a prescription for Betaserc, apologize that they didn’t really know how to treat me — and extend a friendly invitation to come back in a year for another check-up. They each had their own thoughts about what was wrong with me. Of course I also tried manual therapy — but none of it helped.
Full tilt boogie.
Back then, I suppose I should have considered myself lucky to suffer an average of only one attack a year — but still, that one attack had to be endured. You do whatever you can to get through it. The people around you doubt that it’s anything physiological. “Must be psychosomatic,” they say, trying to be helpful. And, yes, from the outside it looked like I was in perfect health, fussing unnecessarily over nothing.
But there were those occasional crashes. The best way I can describe it is to say it felt like somebody grabbed the back of my head and stuffed me into a washing machine on spin cycle. Add severe nausea and vomiting to that, and you’ll begin to get the picture — and these episodes lasted anywhere from a full day to several days … and sometimes went on for weeks. The worst part of it, though, was the fear I lived with between episodes: when it hits me again, what will happen to me? You can imagine the impact this had on my everyday life.
Reaching into a kitchen cabinet for a jar of peanut butter wasn’t just “reaching into a kitchen cabinet for a jar of peanut butter,” like it would be for a normal person. Something as simple as stretching out for an hour in a beach chair with a good book? Forget it. And imagine driving a car on a busy road and suddenly realizing you can’t turn your head to the left or right. That’s a pretty serious handicap, right? But my sickness wasn’t even recognized as a real condition.
Hormonal ping pong?
When I was pregnant with Charlotte, my youngest, the situation became unbearable: 13 weeks of dizziness! Why? There wasn’t anything visibly wrong with me, was there? Unfortunately not. My gynecologist was morally supportive, but there was nothing he could do for me physically without putting my baby at risk.
All I could do was retreat into manual therapy and homeopathy. My condition was given yet another name: “disharmony in the neck.” Oh, plus poor circulation. I saw a kinesthesiologist several times. Sometimes that was effective, but other times it left me feeling worse. Strange as it may seem, some of the manipulation was similar to treatments that would later truly help me, but I didn’t know that at the time. My gynecologist thought the answer was obvious: “Once upon a time, you had an ear infection. That’s all there is to it.”
During the months of my pregnancy, I could often be found huddled at the foot of the stairs, unable to move — while my son Arthur, my second child, lay helpless and alone in his crib. I was scheduled for induced labor at 37 weeks, in order to release me from my misery “a little ahead of schedule.” Charlotte had a plan of her own, though, and at 36 weeks and five days my placenta ruptured and she was delivered in the nick of time. And guess what? The moment she was born, my dizziness disappeared. Maybe it had been hormones, after all.
The vertigo attacks continued to come and go, some of them worse than others. In July of 2007, my friend Linda Riondato died. She was such a sweet woman, full of life, beautiful, glowing with health. I liked her very much, and it was a terrible shock when the letter announcing her passing arrived. She wasn’t even 30, presented the same symptoms as me. In her case, though, it actually was a tumor. Why her and not me, you wonder — and you comfort yourself with the thought that you are the lucky one….
So I did my best to live a normal life, to work, but the attacks were coming more frequently and, after an especially debilitating episode in late August of 2007, I felt like I’d come to the end of my rope.
How long will this one last? How much of a break will I get before the next one? Maybe I should ask for another scan? “Sweet dreams, honey,” my husband whispers, but how sweet can my dreams be when I’m forced to lie in the same cramped position all night, trembling with fear? Will this torment ever end? Will I grow old like this? Thanks, but no thanks. I’d rather die.
Well, not really. In many ways, I loved being alive — and I felt responsible for my three little ones. As soon as I was able to sit up straight again, I rolled up my sleeves and — since no one else seemed able to help me — dove into Google on a do-it-yourself research expedition, hunting for a plausible explanation of my illness.
The internet led me to several articles in Eos, a Dutch popular-science magazine, and those articles introduced me to Professor Floris Wuyts. A trained physicist — and a lecturer in physics at the University of Antwerp — he’s also the research director of AUREA, the Antwerp University Research center for Equilibrium and Aerospace, a world-class facility specializing in the study of balance. I learned that his department had recently acquired a €500,000 swivel chair, which was being used to study the vestibular systems of astronauts, who came to Belgium from around the world to consult with Professor Wuyts. Such detailed investigation into the causes of dizziness was only being done in a handful of hospitals around the world.
One unique feature of AUREA, I read, is that they have the ability to map out the entire vestibular system, while other labs have only been able to measure about 20% of it. Amazing — but no guarantee that the cause of vertigo could be determined in any one particular case.
Why had no one ever told me this place existed? To me, it seemed like my last chance at a resolution. I had nothing to lose. So I screwed my courage to the sticking-place and took action.
Naming the baby.
Despite much skepticism, outright disbelief and advice to the contrary — from, amongst others, my doctor — I emailed Professor Wuyts a history of my 14 years of misery:
Dear Professor Wuyts,
For the last 14 years, I have suffered from severe attacks of vertigo. They happen several times a year and last from two to four weeks. I’ve gone through various tests in the hospital (administered by three different ENT doctors). They all agree that something is wrong with me, but they haven’t been able to pinpoint the cause or determine whether my problem is Ménière syndrome or BPPV or something similar.
Meanwhile, I’ve been seeing a kinesthesiologist for manual therapy on my neck, because the doctors agree that I’m dealing with a combination of two issues: a “defect” in my inner ear and a misalignment of my cervical vertebrae, which constricts the blood flow to my vestibular system.
The kinesthesiologist helps a little, but the Betaserc I’ve been prescribed doesn’t seem to do me any good at all. As I understand it, the pills are supposed to reduce the pressure caused by the overproduction of fluid in the ear, but if that’s not the cause of my distress then I’m taking medication that is in fact unnecessary and won’t be of any value.
My current episode began on August 25, and the last few days I have experienced extreme dizziness, an inability to turn my head or my eyes, vomiting, hypersensitivity to light and sound — there has been no loss of hearing — a feeling of pressure in my head and behind my eyes, and a tension in my neck which makes everything else even worse. This morning I was able to sit up a little, and I spent some time online looking for information that could lead to a lasting solution. This is how I learned about you.
I hope that you may be able to help me finally identify the cause of my illness and guide me towards proper treatment. Is there a long waiting list for an appointment with you? Would your testing even be possible if my symptoms suddenly disappear? I’m guessing that such testing is performed on an outpatient basis — is that right? I look forward eagerly to your response.
With best wishes,
After that, things developed quickly. I was invited to AUREA for testing. And within 15 minutes of putting on Professor Wuyts’ video spectacles, my condition was finally given a name: Benign Paroxysmal Positional Vertigo (BPPV).
Harmless but treacherous. BPPV is a notoriously disruptive form of vertigo that strikes during certain physical movements. “Benign” means not life-threatening, and “paroxysmal” means that the symptoms occur suddenly. So a diagnosis of BPPV indicates that the patient is afflicted with non-life-threatening dizziness that attacks without warning during certain types of head motion.
This is different from Ménière’s disease, different from an infection in the vestibulo-cochlear nerve. It’s not a matter of improper brain function or anything of that sort. No, the cause is simply the loosening of those tiny crystals in the utricle, which is one of the two otolith organs in the inner ear. Nothing could be simpler or more boring.
To give me more insight into my condition, I was handed a snow globe, just like we had on the mantel when I was a child. Shake it up, and the snowflakes drift. Pretty! But that pretty drifting is pretty debilitating when it happens inside the human ear.
You could look it up! BPPV has in its turn a cause, but that varies from patient to patient. In older people, it often results from the natural degeneration of the inner ear. But I was only 23 when the misery began. A second possibility is trauma to the head — and, yes, I remember a time when I fell flat on my face after a night of partying … but that happened when I was barely 21, two years before my first attack. So let’s figure that, in my case, the answer lies behind Door #3: a virus in my inner ear.
This diagnosis meant that I could toss my Betaserc in the trash and consider myself lucky to have been afflicted with the best possible type of vertigo. “The best possible type of vertigo” might sound oxymoronic, but what I mean is that it’s the easiest type to treat, requiring only a certain special physical manipulation that causes the wayward crystals to return to their original positions.
And more good news: BPPV is self-limiting. This means that the symptoms eventually disappear even without treatment. They have a tendency to crop up suddenly and vanish just as abruptly. Which is what makes the condition so treacherous.
Free at last!
Professor Wuyts freed me from years of torment — or should I give the credit to Dr. John Epley? When I returned home, I found a physiotherapist trained to administer what is known as the Epley maneuver and scheduled nine treatment sessions. What exactly did this new regimen involve? Well, the physiotherapist, of course, a pair of gentle hands, a vibrator … and a big bill. The vibrator gets those little crystals shimmying and shaking, and the gentle hands execute the Epley maneuver (or the similar Semont maneuver, named for Dr. Alain Semont), which guides them back where they belong. After each session, I spent the next 48 hours in bed with my head at a 45° angle — leave out that part of the process, and the crystals swirl right back towards forbidden territory. Perhaps a diagram will help make this clear?
In addition to all of that, there were some circus exercises that made me feel completely ridiculous, plus the Brandt-Daroff home exercises, a habituation therapy that helped reduce the symptoms of vertigo and allowed me to function normally. It was a lot to deal with, but so be it: it really helped. When I asked my physiotherapist if I ought to buy my own vibrator, he grinned in amusement.
But that wasn’t the end of it. Because I continued to experience occasional episodes of dizziness, my physiotherapist recommended additional treatment. “This is one for the textbooks,” he said. At my age, I really shouldn’t be having these continued issues, and I had to do something about it. Some sufferers, he said, were helped by surgery — but he didn’t know what sort of operation was involved or where to get it. So back to Google I go!
A little cyber detective work, and I dug up several articles about something called “canal plugging,” a surgical procedure that blocks the most sensitive part of the inner ear, preventing the little crystals from drifting into the posterior canal. To me, this seemed to be a last resort — it’s not used very often and involves a certain amount of risk, such as possible hearing loss.
Seek, and ye shall find.
Further investigation led me back to AUREA, this time to Dr. Paul Van de Heyning, a colleague of Professor Wuyts and head of the ENT department at the University Hospital of Antwerp. Dr. Van de Heyning has spent years studying the pathology of balance, and he’s the one who performs the surgery. He seemed to be the man I was looking for.
Another email, again presenting my tale of woe. Might I be a candidate, I asked, for the canal-plugging procedure? I had other questions, too. According to my research, the operation was only performed after other treatment protocols had failed — on approximately 1% of patients diagnosed with BPPV. What were the criteria for being accepted into that elite circle? Was it true that the procedure is successful in 90% of cases, and that only 3% of those undergoing the surgery suffer permanent hearing damage or loss? Was it true — as some sources suggested — that the operation was no longer being performed, and, if so, why? In short, was posterior canal plugging a good bet for me, and, if so, is your team available to perform the surgery? I could have said all of that, I suppose, in a single four-letter word: “HELP!”
In due course, Dr. Van de Heyning replied.
As it turned out, canal plugging was in fact only recommended in about 2% of cases. Before I could be approved for the procedure, all possible other explanations of my condition had to be 100% excluded.
So I was yet again subjected to countless new medical exams. The doctor examined me, I redid the tests with the video goggles and endured the nausea-inducing caloric stimulation (with cold and then warm water sloshed into my ears). There was the swivel-chair test, the X-rays, an MRI. And finally the discussions of the procedure itself and the final green light, with surgery scheduled for July.
This top surgeon was prepared to solve my vestibular disorder for once and for all. How? Simple: by sticking an ordinary plug in my ear. I decided to hold off for a while. We were understaffed at work at the moment. I’d already waited so long — what was the rush? Things would slow down around November. Let’s do it then.
It was a long and even a little scary countdown. As we neared liftoff, the surgery had to be rescheduled for a week earlier than planned. Just as well, since my situation had taken a turn for the worse. All of a sudden I found myself plagued by issues I’d never before had to deal with: knee trouble, mouse arm, a throbbing headache, a terrible sore throat, a night-time cough.
That last one turned out to be a serious problem. “You’re coughing? That’s a shame: we’ll have to postpone the surgery.” Thus spake the anesthesiologist, my last appointment before the big day. In a state of panic, I ran to the doctor and wailed, “Now what?”
None of these last-minute ailments were imaginary. I really did have an inflamed knee, a heavy tingling in my wrist, swollen glands and a raw throat. With a spoonful of cough syrup, though, I figured I could handle the surgery. But: “No medication before the operation!” the doctor ordered. “Just relax and stay calm.” That was easier said than done, but starting the countdown all over again was unthinkable, so I forced myself to chill out.
As D Day dawned, I was filled with doubts. I hadn’t had a dizzy spell in weeks. Lying in the hospital in my surgical gown, I felt guilty for wasting the medical team’s time. For a moment, I considered getting out of bed and going home — but I’m glad I decided to stay put.
Since they were operating on my head, they gave me enough anesthetic to put me way under. I was unconscious for two days. I hadn’t anticipated how much of a toll the surgery itself and then the recovery period would take. Probably just as well: if I’d known, I probably wouldn’t have dared go through with it.
Is there a Dr. House in the house?
After the surgery, I was so full of chemicals — antibiotics, cortisone, IV drips to prevent dizziness, pills to sooth my stomach, pain meds, a salve to prevent ear and IV-related infections — I was reduced to a pathetic little pile of Tania, sort of like Gregory House without the rudeness and sarcasm.
The poison, the IVs, the irritating pressure bandages wrapped around my head, the muffled roar in my ear … all that led to a feeling of claustrophobia, high blood pressure, heart palpitations, even hallucinations. My room was too small, the bed was driving me crazy, the TV volume was far too loud, the hospital smell, and some nurse shining a flashlight in my face every hour … ugh, it was awful!
But I was lucky to wind up in the care of a true professional. I don’t think anyone else could have done as masterful a job as Dr. Van de Heyning. And the care and dedication of my dozen nurses was beyond reproach.
At last I was released from the hospital. Clutching a puke bag in my hands, I stared straight before me, afraid to tip my head up or down. I huffed and puffed, every step a challenge. But I got through it, and made it home without using the little paper bag.
There’s nothing better than being home, staggering clumsily from chair to sofa! I looked like a corpse, but there was no pain. Aside from my appearance, the news was all good: according to the doctor, the operation was “a technical success.” And what a relief: my auditory nerve came through undamaged. When a vibrating tuning fork was held next to my ear, I could hear it clearly!
Light at the end of the tunnel. The point of the operation was to release me from my dizzy prison, but relief was neither instant nor complete. For the first few days after I returned home, I reeled from room to room like a drunk in an amusement park — but that’s apparently normal. The ear is full of blood and fluid, and my vestibular organ needed time to adapt to its new piercing. I went on popping pills and holding my head as straight as I could manage, hoping that, in time, my condition would stabilize. A little rest and rehabilitation and, sure enough, it was back to business as usual: back to work, back to taking care of my kids, back to life the way it’s supposed to be lived.
So it only took 15 years for this little guinea pig to get a proper diagnosis, and I did it all by myself! Well, with Google’s help, of course. Thanks, Google, for guiding me toward a new and improved life!
Read the full story in Dizzy Me.