Note from Tania Stadsbader, author Dizzy Me
Liesbeth’s case – and the consequences of her journey – is one of the thoughest I know. Liesbeth and I wrote this story half a year ago and I kept it from posting because we didn’t knew the exact cause of her illness and I hoped we would have progressed by now. But reality is… we didn’t. Now we must post the story as it is. Welcome in this reality.
Please share and comment to raise awareness.
Ping pong diagnoses
I’m Liesbeth, 35 and, until recently, I was a lively, enterprising woman. In late July of 2014, I’d just begun a new job as editor-in-chief of Plotsdoof, a magazine published by the Sudden Deafness and Adult-Onset Deafness Foundation in The Netherlands. In with a pile of other information, I found a book titled Dizzy Me. That interested me. I know that dizziness is often reported by people who have problems with their hearing, cochlea, vestibular organ, or ossicles. All those tiny little elements inside our ears….
The usual diagnosis is either Ménière’s disease or a virus in the vestibular organ, and most ENT doctors look no further than those two possible causes.
My husband once found himself unable to move without throwing up. ‘The gentleman is either suffering from positional vertigo or an infection of the vestibular organ,’ the doctor told him. ‘There’s really nothing we can do for him.’
But seriously, folks….
Unfortunately, I’ve been wrestling with my own balance issues and spinning vertigo since April 2014. Since I also have hearing problems, Ménière’s disease was immediately suspected. I had the usual examination by an ENT and the usual questions about my medical history, and, since I was also experiencing facial pain, an MRI to check my auditory nerve and rule out a possible neurinoma. Once that had been excluded, it was decided that hyperventilation was the culprit, and I was referred to a physical therapist. That diagnosis just seemed so wrong to me, though. I felt insulted, like my complaints weren’t being taken even remotely seriously.
I wanted to have a copy of Dizzy Me at home. Not that I could read it, since my dizziness made reading impossible. The lines of print blurred into each other, the words danced crazily on the page. In connection with my job, I did a joint interview with Tania Stadsbader and Floris Wuyts. That turned out to be the last bit of work I was able to complete before becoming too ill to continue functioning.
Dizzy Me had an enormous influence on me, and I was inspired by Tania’s determination. Thanks to her, I understand how important it is to share our knowledge. After 15 years of struggle, Tania has happily recovered from her complaint, but she continues to fight to help others receive proper diagnosis and treatment. Together with Floris Wuyts – her partner in crime – she pushes for more research into and awareness of vertigo, of dizziness in all its forms. What gets me is the scope of the problem: we know so much, but there’s so much we still don’t know. And there are so many people who simply can’t function due to these debilitating symptoms.
What exactly is the cause of my condition? That remains a riddle for now. Like Verony – whose story is published in Dizzy Me – I’ve had several previous eye surgeries. Is that what’s compromised my balance? Or could it be MS, a possibility that has the doctors picking petals off a daisy and chanting, ‘It’s MS, it’s MS not’? It’s all very confusing. The doctors have prescribed a cocktail of various medications, and all they’ve done is make things worse.
For more than a year now, I’ve been confined to bed. I’m so unstable, so subject to attacks of spinning dizziness, that I can’t even walk with my eyes open. If I dare to try, I become horribly nauseous and lose my balance. I can’t walk without assistance, and of course I can’t ride a bike. I can’t read, can’t watch television because of the moving images and the bright, flickering lights. I can’t work. I guess I’m ‘lucky’ I don’t have children to take care of. Because this condition turns your whole world literally upside down. And not just your world, but your partner’s, and everyone else you’re close to.
A normal person in a crazy world.
In 2015, I spent more than four months in a Dutch hospital. In the absence of an accurate diagnosis, I found myself someplace where I really didn’t belong: first in a geriatric ward, and then in a psychiatric ward. I wasn’t mentally ill or making it up, they assured me. The idea was to wean me off my medications and prepare me for an examination by the professor who cured Tania. But I just got sicker there. It was obvious the staff didn’t know what to do with me. After talking with Tania, I spent two days in Antwerp in Belgium, where a multidisciplinary team re-evaluated my medical records. I underwent testing, and Floris explained to me that, nowadays, the biggest problem is overmedication as a result of misdiagnosis. I returned to the hospital in The Netherlands, and in September 2015 I went back for more ENT and neurological testing in Antwerp. Wuyts would help me, but with no specific neurologic advice about the medication as he said, he can’t. After testing at ENT, Wuyts could assure me ‘vestibular there is nothing wrong. The problem is to be found at neurological level.’ He is convinced, if I want to get better, I should get rid of that medication cocktail. But that is where we end the story for now; we ended up stuck at the neurologist, as we still didn’t get a diagnosis from the neurologist or didn’t get a decent follow-up treatment.
I just turned 35… In the meanwhile, my autonomic nervous system is disturbed. Caused a chronic pain syndrome similar to dystrophy. Spasticity caused neuralgia and cramping. 24 hours a day in bed.
Eventually, I hope we’ll get a complete picture and they will be able to help me get better. But I am still waiting and fighting my symptoms today.
I’ll see another neurologist in February. I need a diagnosis to get a decent treatment and cannot get rid of the medication cocktail without a doctor helping me.
I am 35. Not that long ago I was full of life and healthy. Today I need a stair lift…
We are family.
Meanwhile, Dizzy Me has become a ‘thing’. Over and above the sharing of valuable information, the Dizzy Me community has become a lifeline for me.
When I hear about someone else’s experience and find myself thinking, That sounds so familiar, or when I have trouble putting what I’m going through into words but other members of the community just get it, anyway, you have no idea how helpful that is. I get emails and letters from people I’ve never met, but we ‘know’ each other, thanks to Dizzy Me. The support, the sense of connection, is amazing, and it does me a world of good – it’s a literal lifeline that gives me a smile and lightens my load.
Gelderland, The Netherlands
Written for Dizzy Me
Note from Tania
This is what happened to even more people I know personally. Being hospitalised in geriatry, in psychatry, with a wrong diagnosis and medication cocktail, with no doctor willing (or having the right?) to take the multidisciplinar responsability.
I tried as much as I could to help Liesbeth personally. Mailed, chatted, called her husband in the Netherlands, put her in contact with experts, sent postcards to encourage her, asked our dizzy friends to do the same…
It’s all related and all clear what we should all do, together. We could change history if we become 1 big family.
You’ll also find Verony’s story mentioned by Liesbeth on my page on Facebook (just scroll to find the stories).