Cliché Day. Misdiagnosis in Dizzyland, a cliché?
A 16 year search.
I am 26. As a little boy I was already
struggling with balance problems.
I think I was 10 years old when, in the middle of the night, I suddenly woke up with my world shaking violently and me in a total panic. I could not lift or move my head and was intensely nauseous.
Those days my mother was there to stabilise my head and make such an attack a little more bearable. My eyes kept shooting from left to right and my stomach was in knots every time, I was so miserable I felt like throwing up any minute. The attacks returned regularly and were accompanied by ringing in the ears, sweating, hearing loss and pressure in the ear.
The initial diagnosis.
Also the first misdiagnosis.
After a few visits to the g.p. and eventually to the hospital in Leeuwarden, the Netherlands, I was diagnosed with Ménière's disease. The symptoms were very similar and in those days other syndromes were not yet well understood. There was not much to be done about it. Perhaps the intensity would diminish somewhat since I was still young and often illness settles a little along the way.
Damaged as a person.
From that moment on I was, without me realising, already damaged and the stress started seeping into my body. The following years the attacks shortened and the intensity lessened. Often I felt a bout of illness was coming up and it became a rare event. Usually it happened when exposed to extreme stress, nerves or other uncommon stimuli.
I aged and ended up suffering only from pressure and ringing of the ears, and hearing loss. Still this was a source of irritation and I was continuously trying to clear my ears, without result.
Illness is stressful.
Stress causes illness?
At the end of 2015 after additional medical
troubles I was told that my thyroid was too slow. Was there a relation between
past symptoms and my thyroid? That was not well know yet. But the medication I
had started to take was decreasing the degree of ear ringing somewhat. Recovery
took me 2 years, accompanied by stress, which led to neck problems that
interfered with my balance too.
Healing at last.
And getting worse again.
At the end of 2018, I was 25 by now, I started to feel like myself again. My symptoms were gone for the most, the thyroid had stabilised and I could go about my day without being reminded of past times.
In this phase I went through 2 medical procedures. One passed without any problem, the other prompted an extra anaesthetic due to insufficient effectiveness. At the time I didn't consider the consequences for my thyroid or vestibular system.
February 2019. I was lounging in my chair
watching tv when I experienced a sudden intense bout of vertigo that caused my
eyes to jump back and forth: nystagmus. I was shocked and reminded of earlier,
of my thyroid and all the misery I had endured. I was hoping it was a one-off
Yet I am left with a bitter aftertaste because I wasn't able to receive the proper care in my own hospital, due to a lack of expertise.
Attacks with a pattern.
Sometimes you can identify a pattern.
Unfortunately the attacks became more frequent and I could almost recognise a pattern. They began out of the blue, without any head movement, but often in a seated or supine position. I took this information to a g.p. who suggested it was a "virus". Sure, a virus?! They know of my history, but are sending me back home with this story!
The attacks kept occurring and I received a BPPD treatment 3 times in MCL Leeuwarden. I already indicated during the first of these that I didn't feel anything. Do you know what they told me? That I'd have to do this more frequently because it has 'occasionally' helped people.
Obviously this course of action didn't lead anywhere. It was followed by balance testing. I could predict the outcome of this myself because I was aware that my left side was not functioning as well. This was indeed the result, but I remained without a diagnosis. A load of nonsense. I was now months in and my life came to a complete halt again.
Investigating by myself.
Time to conduct my own investigation.
My list of symptoms led me to a mister Richard Brinkman, who happens to live in my area!
I read his story and it was so recognisable to me. I bought the book DizzyMe and contacted him while in the process of reading it. He gave me valuable info on his treatment in Antwerp and the expertise there.
Through Richard I found House4Balance. In June this year I sent them an email in despair, containing my case history. I got a swift response and they helped me along, and by July 31 2019 I was already able to see Floris Wuyts in Belgium. I didn't hesitate to decide. The attacks kept happening, the expertise in Antwerp was my last hope.
Towards a diagnosis.
With an MRI result and a record of my attacks, I made the journey from the North of the Netherlands to Antwerp to tell my story. I was well prepared so I did not need much time to answer questions. Based on the MRI and my symptoms I got the (probable) diagnosis of Vestibular Paroxysmia and a prescription for a medicine. The medication Vimpat (an anti-epileptic) is relatively new and consists of the active ingredient Lacosamide, which acts like carbamazepine.
Pills. Not standard pills.
The right pills make the difference.
On August 6 I started to build up the dosage of the medication. During the first week I experienced a few attacks still. Afterwards I didn't get an attack up until today... My hearing has improved by 30% and the pressure in my ear is gone.
I still find it hard to believe, but I am on the mend. October 30 I had my second consult and I had only good news to share with Floris. He was incredibly enthusiastic that the medication had stopped any further attacks. I went over the schedule to decrease the dosage with him; I will start this at the end of January. This will show whether I am able to function without the medication.
I am lucky.
Lucky with a bitter taste.
First and foremost I feel incredibly lucky to have had the opportunity to meet with Floris in Antwerp and to start recovery now, after 16 years.
Yet I am left with a bitter aftertaste because I wasn't able to receive the proper care in my own hospital, due to a lack of expertise. I will address this with my ENT consultant, because they will regularly come across patients with this special condition that is not well known.
Particularly since I, remarkable and a real pity, was not the first but one in a line of multiple people that was treated incorrectly for BPPV there - something that negatively affects VP - and once I crossed the border, I found out I am dealing with VP and this can be helped!
It is a serious problem when people like me are out for months, because medics and ENT doctors are holding on to old procedures based on dated knowledge.
Onwards and upwards!