Fleming writes book about life with vertigo
Together with an Antwerp professor, Tania Stadsbader, who suffered from vertigo for 14 years, has written a book about her experiences in a fast-paced, career-oriented world in which there is little room for dizziness
A long journey
Dizzy Me, written in Dutch but soon to be published in English, is a guidebook about vertigo for patients and doctors, and it was co-written by the Antwerp balance specialist Floris Wuyts.
“Humans are designed to go hunting, which makes gaze stabilisation essential for survival,” says professor Wuyts. “People who suffer from vertigo don’t have this stable gaze and have the constant illusion of movement, even when they’re standing still. It’s a sensation similar to feeling drunk.”
Stadsbader, 44, from Herne, Flemish Brabant, suffered from chronic dizziness for 15 years, which, at its worst moments, left the mother of three bed-bound for days on end. “A simple head movement could cause the room to spin around violently for a couple of seconds, followed by hours or even days of extreme nausea, vomiting and feeling very sensitive to noise and light,” she explains.
The cause of vertigo can be found partly in our inner ear, in the vestibular organ. “This organ detects every movement our heads make, and the brain uses this information to stabilise our eyes,” Wuyts explains. “For instance, when you’re sitting down, your brain makes an internal image of the position, based on information from your eyes, muscles and vestibular organ. But when one of the sources is wrong, say, the vestibular organ, there’s an illusion of movement, and your surroundings start to spin.”
Wuyts uses the image of a snow globe to explain the inner workings of the vestibular organ. “There are crystals in your vestibular organ embedded in a gelatinous structure. But sometimes they get loose and start floating around every time you move – a bit like the snowflakes in a snow globe,” he says. “This causes dizziness, called BPPV in medical terms – Benign Paroxysmal Positional Vertigo.”
A rare exception
BPPV is exactly what Stadsbader (pictured) suffered from, even though it took her more than a decade to find out. “I was 23 when it first happened and visited so many specialists and doctors,” she says. “I was diagnosed with so many different diseases, but nothing seemed to change. Since I didn’t really look ill, people started to think I was making it all up.”
There were a lot more people suffering from this than I thought
Stadsbader began looking for information and help online. One day, she landed on the webpage of one of the institutions of the University of Texas System in the US that exactly described her symptoms. In the process of trying to find out more about the doctors involved in the research, she found an article in the Flemish science magazine EOS that mentioned Wuyts, head of the Antwerp University Research Centre for Equilibrium and Aerospace.
She booked an appointment with him as well as with an ear, nose and throat specialist at the Antwerp University Hospital. Stadsbader was finally diagnosed with BPPV in 2007.
BPPV is one of the main causes of dizziness. “It can happen after you bumped your head or sometimes it’s just bad luck,” Wuyts says. “One out of five people with a vestibular disorder have BPPV. It’s also very common in older people; about one out of seven people older than 70 suffer from it.”
The disease can be managed with the so-called Epley manoeuvre, a series of twists and turns to the body and head, executed by a specialist, that are meant to put the crystals in the vestibular organ back in the right place.
“Tania Stadsbader was one of the rare cases where repeated Epley manoeuvres didn’t cure the dizziness,” Wuyts says. “The only way the crystals could be stopped from floating the wrong way was by putting a plug in one of the canals of her inner ear and thus blocking their passage.”
Stadsbader successfully recovered from the canal-plugging operation in 2008 and has kept an online diary ever since. Under the pen name Dizzy Me, she blogged about her experiences and her road to recovery.
“I wrote in Dutch but noticed I got visitors from all over the world,” she says. “I got emails from people from as far away as the US and Egypt, and when I looked at all the search words used on the blog, I knew there were a lot more people suffering from this than I thought.”
Stadsbader bundled her blog into an e-book, wrote a description of the illness and contacted Wuyts for feedback. He loved the idea and even decided to handle the scientific part of the book. “In 2010, we published the first version of Dizzy Me with my diary and medical and scientific information from professor Wuyts,” says Stadsbader.
New insights, new book
A few weeks ago, the second edition of Dizzy Me was published. The first one completely sold out, and since research into dizziness had resulted in new insights, the medical part required significant updates.
“BPPV is one of the causes of dizziness; vestibular migraine is another important one,” Wuyts reveals. “When the first book was published, very little was known about vestibular migraine as it had only just been defined by science. The new Dizzy Me has the latest information on vestibular migraine and how this condition was previously mistaken for Ménière’s disease.”
According to Wuyts, that relationship between vestibular migraine and dizziness also makes the book relevant for doctors. “About 12% of people with dizziness suffer from vestibular migraine,” he says. “It can be treated fairly easily, but only after the right diagnosis.”
One important distinction is that in the case of Ménière’s disease, the vertigo typically lasts between 20 minutes and a couple of hours, while with vestibular migraine, it can range from a couple of minutes to over a day.
“A thorough patient case history is mandatory and based on the eight questions of the so-called ‘So Stoned-list’, as described in the book,” Wuyts explains. “Doctors should be able to rule out more easily what kind of dizziness their patients are suffering from.”
The updated medical chapter of the book is based entirely on peer-reviewed articles. “In our Western and career-driven society, there’s no space for feeling dizzy, which is why there’s been quite some research over the last couple of years,” Wuyts explains. “But at the same time, progress is slow as the equilibrium system is so difficult to study. However, as a doctor in physics, I am trying to approach it from different angles, like through my research with cosmonauts.”
When arriving in space and coming back to earth, astronauts typically suffer from disorientation and vertigo. The crucial difference is that it’s temporary. “Brain scans from before and after their trips to space offer us important insights,” Wuyts explains. “The spots where we notice a difference can help us to define where and what to look for when examining patients with vertigo.”
In addition to helping doctors with the diagnostic process, the book, by way of Stadsbader’s story, also offers readers a reminder that vertigo can be cured. “Whereas the diary in the first edition may have depicted me as a victim, I’m definitely a survivor in the second edition,” she says, laughing. “In the first edition, the cover shows me with my feet in the sand; in the second I’m in high heels on top of a wall! I explain everything about how my life has changed and how I got a new job.”
Vestibular migraine can be treated fairly easily, but only after the right diagnosis
Stadsbader, who today works as a marketing and communication manager at the Free University of Brussels (VUB), even became an ambassador for the US-based, awareness-raising Vestibular Disorders Association. She also has a Facebook page where she keeps in touch with patients from around the world.
“They share their symptoms, look for recognition and ask for medical advice,” she says. “I’m by no means a doctor, but I try to give them as much information as I can and give them the contact details of the specialists that helped me get back on my feet. We’re also working on an English translation of the book – to guide even more doctors and patients.”
The last picture in Stadsbader’s diary is one of her running the Brussels half-marathon. “Something I never thought I could do,” she says. “I’ve picked up running and cycling, and my next big challenge is the Paris-Roubaix. It’s about 270 kilometres on my bike.”
Dizzy Me is published by ASP in Dutch
Photo by Leen Vandeweghe