Tania Stadsbader, VeDA Ambassador and author of the book, “Dizzy Me” – a memoir about her frustrating journey to get a vestibular diagnosis – has launched a crowdfunding campaign to help get her book translated from Dutch into English.
Tania says about this project:
I was a misdiagnosed vestibular patient for 15 years (1993 – 2008) before meeting vestibular expert Dr. Floris Wuyts. He finally diagnosed me correctly – leading to a cure in 2008 – and eventually became the co-author of my book, “Dizzy Me.”
100,000 wise words we want the world to know:
- Words of RECOGNITION…
…in order to label and personalize illnesses that may be intangible to you, but are an unfortunate reality to many.
- SCIENTIFIC words…
… that empower doctors to finally diagnose correctly, based on valued knowledge. As a result, cures and remedies will be within reach for many who suffer today.
- Words of UNDERSTANDING and COMPASSION…..
… that speak up for each variety of dizziness; before the age of 60, 30 to 40% of us are challenged by it.
Misdiagnosis of vestibular patients is a common problem. We are planning doctor seminars to reeducate them about vestibular disorders; we mention 12 different diagnoses in our book. Most doctors hardly know or recognise 4 of them.
If this is important for you, please help us publish an English translation so we can help even more vestibular patients who have suffered just like me.
Tania shares the first chapter of her book below to give vestibular patients a taste of the inspiration her book has to offer.
If you would like to help Tania bring her book to the English-speaking public, visit her Ulule page.
Even your 1 symbolic euro can help to make the English edition available soon!
You can also donate via bank transfer:
Project owner: Tania Stadsbader
Project: Ulule – Dizzy Me
IBAN BE24 6528 4135 4238
Party in my head. Usually, we stand firmly on both feet without getting dizzy as we move, thanks to the ingenious balance system mother nature gave us. But until recently, that ingenious system didn’t work so ingenious for me. It took me years to discover why. It wasn’t until September 2007, after fourteen years of searching, that it was confirmed by a doctor. We have them all, tiny little crystals in both ears, making sure that we can keep our balance straight. Every once in a while, my little crystals threw a party.
From pillar to post. For years I swallowed misdiagnosis. It started with so-called hyperventilation, mutated to a possible brain tumor, invited me to a brain function research and got up beating names like Illness and Ménière's syndrome, a lazy balance organ, a deviation and poor circulation in my vestibular system. Or maybe I was just experiencing some hormone trouble, fatigue and stress or perhaps a disturbance in the neck.
But the first to hit the ball in the right direction was my vet. Because, guess what? That first time me and my dog were in the same boat. The man ridiculed the rather easy hyperventilation theory of the doctor on duty. The hyperventilation was an isolated incident: my panic reaction to that first time. He told me about pictures of patients, terrified and clinging at the table leg, the last lifeline at that moment while having an attack. He was the one who advised me to proceed.
After a scan and brain function research, I ended up at the ENT doctor. They always welcomed me with few words, many classical tests and a “You can still hear? Don’t you?” In the following years I met a few more like them. With the usual portion Betaserc and a sigh of “We actually don’t know what to do with you “, I was always kindly invited to come back the next year for another examination. All of them had devised their own version of the disease. And of course, I also tried the manual therapy.
Running at full speed. Although I could count myself lucky back than with only one attack a year I still had to deal with it. A woman goes to great lengths to get rid of it. For my immediate environment it was obvious to doubt the physical cause. “It must be psychological.” Because yes, at first glance I seemed to be functioning perfectly and I was probably making a lot of unnecessary fuss about a 'luxury' problem.
But occasionally I crashed face flat on the floor. The best way to describe it, is like spinning in a washing machine at full speed after someone pulled back your head in a mean and unexpected way. Sometimes that was combined with severe nausea and vomiting, during one to several days. But it could just as well take weeks and just slumber, and then the worst part was the fear and suspicion: if it strikes again, what will happen to me? And that was causing a lot of impact on my daily behavior.
Taking a pot of chocolate out of the cabinet was never just 'taking a pot of chocolate out'. Relaxing and lounging in a beach chair? Forget it. And try to imagine driving your car on to a busy intersection to suddenly realize you’re not able to look at your right. I call it a handicap. But the disease is not even recognized, let alone acknowledged.
Hormones ping pong? When I was pregnant with Charlotte, the situation became degrading: thirteen weeks of dizziness! How So? Nobody noticed anything? Unfortunately. Morally I got all the support I needed from my gynecologist, but my pregnant state caused a problem. As long as the child was not at term, he couldn’t help me physically.
I then resorted to manual therapy and homeopathy. The condition was given a new name: “disturbance in the neck” it was called now. And poor circulation. Some chiropractic manipulations once in a while and we could continue. Strange but true: sometimes it helped, but sometimes I came home even worse. Well, the manipulations that were used had some similarity with the ones that would help me later, but we didn’t knew that yet. It was just a coincidence! According to my gynecologist it was obvious: “You once had an ear infection; the rest is bullshit.”
In that period they often found me at the bottom of the stairs, while my youngest was hopelessly trapped in his crib. So they decided to get the baby earlier, at 37 weeks of pregnancy. That would get me out of my misery a ‘little sooner’. The child decided otherwise and was saved just in time at 36 weeks and 5 days of pregnancy, after a ruptured placenta. And guess what? Baby born, dizziness away. Maybe my hormones?
Thank you, Google. The attacks appeared and disappeared, some more miserable than others. In July 2007 Linda was buried. A super sweet girl, full of life and beautiful on the outside, glowing with health. I liked her and it was a shock when the letter came. Not even thirty years old, same symptoms. Only she wasn’t so lucky, in her case it was a brain tumor. Makes you wonder. And you comfort yourself with the thought that you are a lucky woman.
So I was trying to live and work as normal as possible, but after fourteen years and a very heavy attack at the end of august 2007, I reached my limit. Because by that time, the attacks didn’t take a one year pause anymore.
How long will this attack last? And when it will strike next? And maybe I should I ask for another scan? Sweet dreams, and all night long being forced to lie on the same side. Hello? Grow old like that? No thanks. I would prefer a shot. Proverbial anyway. Because with just a little too much responsibility for my three sprouts, I went, rebellious because nobody could help me, to do-it-yourselfing on Google. Once I was able to sit up straight, I positioned myself in front of my computer, looking for an explanation of my problem.
Through that journey on the internet and some articles in Eos Magazine I found out about a Professor Wuyts. I discovered that, although an educated physicist – he is a professor of physics at the University of Antwerp – he is also chief of department of a research laboratory embedded in the department Nose, Throat and Ears of the University Hospital in Antwerp. A world-class balance laboratory: AUREA. Since September 2007, in his department there is equipment for €500,000, including the swivel chair. I find out that he is mainly engaged in the research of the balance system of astronauts, and that they come from all over the world to work with him. Only in a handful of hospitals in the world, one can do such a focused research on dizziness.
I read about the uniqueness of that center: they can map the entire balance system, while the classic research units can only measure one-fifth of that system. Which is not sufficient enough to determine the cause of dizziness.
Why has no one ever told me that before? I bet all my hopes on that last chance. Nothing to lose! And I draw my courage.
The child is given a name. Despite all disbelief, suspicion and negative comments – including my doctor – like 'it's probably commerce, “I sent Professor Wuyts an email with a summary of my fourteen years of misery.
Dear Sir Wuyts
Since fourteen years I regularly experience severe vertigo attacks. They appear several times a year and it always takes two to four weeks before they fade away. I have undergone several tests in the hospital (by three different ENT physicians). The ENT doctors notice 'a deviation', but they are unable to tell me exactly what the cause is, or whether it is Ménière's syndrome, BPPV, or something similar.
Meanwhile I go to a chiropractor for mobilization of the neck, because, according to the doctors, I’m dealing with a combination of two problems: ‘a defect’ in the inner ear plus a bad position of the cervical vertebra, which constricts the blood supply to the vestibular system. The treatment of the manual therapist helps a bit, and the Betaserc they prescribe me, doesn’t help me at all currently. I understand that those pills ease the pressure on overproduction of fluid in the ear, but if that is not the cause of my equilibrium problem, I’m actually taking something which is superfluous and doesn’t help.
At this moment I have complaints since the25th of August and the last few days the attack is constant (extremely dizzy, not being able to rotate my head or eyes, vomiting, sensitivity to light and sounds – I don’t have a hearing loss – pressure in the head and behind the eyes, and eventually a tense neck, which makes it even worse). Since this morning, I can sit up straight and on the internet, I was searching for a lasting solution. So I found out about your department.
I hope that through your balance research I can finally determine the cause of my illness and get a proper treatment. I wondered if there is a long waiting list for this test and whether such research does make sense if the symptoms suddenly disappear again. I suppose that the test is done without further stay in the hospital? Is it possible to give me an answer?
And then al of a sudden everything happened fast. I was immediately invited for a research. After only fifteen minutes and a test with some video goggles, the child finally got a name; BPPV or BPPD.
Harmless but treacherous. Benign Paroxysmal Positional Vertigo (BPPV) is a very disturbing kind of vertigo that occurs during certain movements. Benign means “benign and harmless' and paroxysmal stands for “recurring sudden episodes of symptoms”. If a diagnosis of BPPV has been made, then you have to deal with recurrence of sudden episodes, depending on certain positions, harmless dizziness.
It is different from Ménière's disease, for instance, or from an infection of your balance nerve, or the improper functioning of your brains, or whatever. No, the reason is simply the loosening of crystals in the utricle, a part of the vestibular system. Can’t be more trivial.
To fully understand my ailment, they visualized it with a snow globe. Remember when you where a child? You probably had one of those on your bookshelf.
Just look it up. BPPV has a cause somewhere, but which one varies from patient to patient. With the elderly, the reason is degeneration of the inner ear, cause. But that's impossible in my case, I was only 23 when the misery began. Or head trauma, cause 2. Ok, so I occasionally fell on my face after some partying … but that was two years before the facts! We will agree that it was a virus on the inner ear, cause 3. So be it.
The Betaserc can go in the trash can and I can count myself lucky that I belong in the coolest category of vertigo. Because this problem is quite easy to treat, by manipulating the patient in question in a certain way, just as long as it takes for the crystals to return to their original location.
And you know, BPPV is self-limiting. That means that the symptoms often disappear by themselves. Symptoms tend to come and go as they like. That's the tricky thing about this case.
The liberation. I was quickly liberated thanks to Professor Wuyts, or should I say by Epley? Back home I went searching for a specialized physiotherapist in the region and I went on a regular basis for my nine turns of physiotherapy and yet another liberation maneuver. What that means? Well, a physiotherapist, a set of soft hands, a vibrator and a large bill. With the vibrator the handsome physiotherapist makes your crystals tremble, and the soft hands will execute the Epley- or Sémont maneuver. And then go through 48 hours while sleeping with your head up forty-five degrees; otherwise the crystals will go in the wrong direction. Shall I make a drawing?
The treatment was completed with some circus exercises, which made you feel ridiculous, and some habituation therapy: the Brandt-Darofft home exercises to get rid of the worst suspicions and help you to function in a normal way. So be it. He has helped me nevertheless. When I asked him whether I had to purchase a vibrator, I just got an amused grin.
Relapse. However, it was not the end of it. Because I regularly relapsed, the physiotherapist thought I should proceed with the matter. “A case for the books.” This wasn’t ok anymore. Truly, something for seniors, not for me. And it couldn’t go on like that. He told me that some patients undergo surgery. He couldn’t tell me where or how. So we went googling again.
Some research led me to some articles about canal plugging. This is an operation in which the most sensitive channel in your inner ear is plugged, such an opening is sealed, so that the crystals can’t ‘come’ there anymore. A last resort, so it seemed, one that is rarely performed and also involves some risks, such as hearing loss in the operated ear.
Seek and ye shall find. Further research led me to AUREA again, this time to Wuyts' colleague, Professor Paul Van de Heyning, head of the ENT department of the University Hospital of Antwerp, who has spent years immersing in equilibrium pathology. He is the one who operates. He's the man I need.
Again an email with an update of my misery. Since I’m having so many problems with my condition, I ask him if I could benefit from a canal plugging operation. And I also have some other questions. Because on the Internet, I read that the operation was only performed after the failure of other treatments or after regular recurrence: and only on one percent of the patients. Okay, but maybe it’s interesting for me? And is it true that ninety percent of the operations succeed and that with only three percent of the patients it leads to – permanent? – hearing loss? And elsewhere I can read that they no longer perform that operation? What is the catch? And so, to boil it all down: would you advise me to go true with this adventure, and if so it will it be performed by your team? I could just as well wrote “HELP!!!!”
My email has result: he takes the bite.
Then numerous additional studies follow. As a canal plugging operation is indeed performed in only two out of every hundred cases. So before it can happen everything else has to be excluded once again.
I go through them all for the umpteenth time: a few tests by the doctor, the video goggles, the sickening caloric test (the test with cold and hot water), the swivel chair, radiology and MRI scans. Up to the final conversations around the surgery itself and the final go, somewhere in July.
This top-notch is willing to permanently fix my balance problems. How? Simple: with an ordinary plug in my ear. I decide to wait. At work we are understaffed at that time. And I’ve been waiting for so long now. In November it will be calm. Now let's fix a date.
Patched. It was a long and even a little frightening countdown to D-Day. All of a sudden, at the last moment the operation was advanced with a week. Just my luck, because that last week was by far the worst one. Suddenly I had all sorts of ailments that I had never had before: a file knee, mouse arm, splitting headache, immense sore throat and at night a hyper nervous cough. And that last one was a problem.
“Cough? Too bad. Because in that case: operation canceled.” That was the message I got from the anesthesiologist, at the last stop before the big day. So I ran to my doctor in panic: “This is not normal!”
The ailments were not imaginary. Indeed, I had an inflamed knee, an overloaded wrist, swollen glands and a red throat, but with a little cough syrup that operation could go on. The rest was hopefully passing by itself “No medication for your operation! Rest and remain calm, that's all you need to do for the operation.” As big as the panic feeling was, to start all over again with counting down to a deferred D-day, it was a mixed feeling.
Yes, I had doubts as D-Day approached. The last few weeks I had no attacks. Anyone would think I was a luxury horse. And yes, the eternal guilt. For a second I was thinking about walking away in my surgery rug, but I'm glad I took the right turn.
Four days of hell and then home, after an approval by the professor who operated me. It's been a tough road. Very deep anesthesia, given the main operation. Two days of the world. Maybe I had taken it a bit lightly, the surgery itself and the laborious recovery. Fortunately. Otherwise I maybe would never have dared to go through with it.
The Dr House crisis. Just after the surgery, I was just a little miserable pile of Tania, who looked more like Dr House, under the influence of all chemical junk they had poured into my body: antibiotics, cortisone, drips for the vertigo, pills to clear the stomach, extra painkillers, an ointment against ear infections and the infections caused by the drips…
The Dr House-side of all that poison, the drips, the irritating pressure bandages around my head and the muffled sound in my ear I have caused me more than once: claustrophobia, hypertension, palpitations, or even worse, hallucinations. And then there was this too narrow bedroom, a bed that almost literally drove me crazy, an over pushy TV, the smell of hospital and every hour someone aimed a flashlight in your face. Ugh. Miserable.
Long live the cracks. I can count myself lucky that I've ended up in the hands of a crack, a top notch. I think he has created a masterpiece. Also the care and dedication of the dozen nurses has been great.
Home. Armed with my sick bag I fix on to the trees. I puff like I have to catch a few contractions. The bag remains empty. I’ll go through it all.
There’s nothing like coming home and stumble from my chair to my sofa! Even though I look likea corpse, no pain at the wound itself. Besides that, nothing but positive news: the operation was “technically successful,” according to the professor. And that’s a relief: The auditory nerve was undamaged. I can hear the tuning fork in my operated ear.
Just a little bit of forbearing left. Although I was operated because of the vertigo, right after the surgery I was treated on an extra portion of it. Just a few days of stumbling around like a drunk in my own free them park, but that seems to be normal. The ear is still full of blood and fluid and my balance system has to get used to his brand new piercing. Still remain several days of Dr House-moderated pill popping until that effect will go away , keeping my head straight and hoping that in a couple of days, I will be redeemed for good. Then some resting and healing before its business as usual again: taking care of the kids, work, life as it should be.
And all this, after fifteen years of messing around and looking for a proper diagnosis. This guinea pig had to figure it out all by herself. With Google. Thank you, Google.
© Dizzy Me