Thanks to my hospitalization, for not being patient and for deeply listening to my body, I have now a diagnosis: Persistent Postural-Perceptual Dizziness (shortly PPPD or 3PD). But what is it all about? I will try to make it short and easy, if you have more questions feel free to check for more accurate, detailed scientific information.
Persistent Postural-Perceptual Dizziness is a chronic (and here is were I started panicking) functional neurological disorder which causes an almost constant sense of non-vertiginous dizziness, internal motion and unsteadiness. In other words, you might think of being on a boat and swaying or walking as you are on hangover. The symptoms can vary in recurrence and intensity from person to person, but usually they tend to be worse with the exposure to busy environments where you have a lot of visual or noise- related stimuli (e.g. crowded places, stores,..) and by doing tasks that require concentration and a precise visual focus (e.g. using a computer). According to the literature, the symptoms are increased also by movements, but in my case it really depends on the type of motion and on the status of my symptoms on that particular day (sometimes lying in bed at night can be the worse scenario).
PPPD is a fairly rare new diagnosis (scientists reached a consensus in 2014) and it often develops following a trauma (both physical or psychological) or a vestibular disorder, such as BPPV (sounds familiar, right?). What is really difficult in the area of such syndromes is that there is no diagnostic test for PPPD and because it is a ‘software’ disorder, routine examinations and tests are normal, because these focus on ‘hardware’ problems in the nervous system (like stroke, or Parkinson’s disease). The diagnosis can only be made based on the symptoms description and by process of elimination.
What happens to our body is that, particularly in very active people, it tries to quickly find the balance again after the acute episode of vertigo (BPPV in my case) but struggles a lot. During this struggling to be back to normality, the body starts to compensate in all the way possible, for example with muscles (I have a painful contracture on my back and neck) and vision (difficulty focusing). PPPD, in fact, causes "changes in how the brain processes information related to movement (our own and that of the world around us), a bit like a malfunctioning computer software". This way, it is such as we are restarting the software after a failure but in a wrong way.
Also if we don't notice that, our bodies are constantly moving and automatically trying to balance everything up while standing upright. What happens with PPPD is that "the normal ‘filters’ that the brain uses to suppress feelings of movement that we need not be conscious of, go wrong. This way, you suddenly become aware of a sense of motion that you shouldn't feel (hypervigilance, thinking about dizziness or worrying about it), which feels weird and make you start wondering that something is not correctly functioning. Bringing all your attention to the unbalance “turns up the volume knob”, makes it even stronger and so a vicious circle begins. It is then not an accident that anxiety is a risk factor for getting 3PD.
The question I asked my neurologist right after the diagnosis, was obvious: "Is it curable?". But the answer I gave my was not what I wished for. In fact, he told me that being a complex and incredibly variable neurological condition, depending on many factors, the recovery is different for each person, but pretty long anyway. Scientific evidence shows that the treatment, which has to be tailored to each specific individual, requires a combination of several different interventions: Vestibular Rehabilitation Therapy, pharmacological and psychological (Cognitive Behavioural Therapy).
He told me that anyway I was lucky to have such an early diagnosis, as lot of people wait several years to finally find out what is wrong with their unsteadiness.
I have a diagnosis now. It is not 100% sure, as unfortunately we cannot see PPPD on MRI (and the neurologist told me we should keep in mind also other syndromes such as cervicogenic dizziness, vestibular migraine, Arnold's neuralgia,...) but at least I have a path to follow now. And, by the way, it is the only alternative I have instead of doing nothing and wait. But I don't want to be patient anymore, I want to do everything possible in order to improve my condition.
Bali, May 2018
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