A turbulent week, but with opportunities to learn
A new diagnosis is humbling, yet prepares me well for a better future.
I’ll get straight to the point… Last week I was diagnosed with Functional Neurological Disorder (FND). While it’s immensely frustrating to deal with at times, I believe there is so much I can learn from recognising what’s going on with how my dysfunctional brain functions. Finally having an actual diagnosis makes a real difference and is strangely liberating.
My experience with this disorder is not new. I have been exhibiting the constellation of symptoms that characterise the condition since the infamous brain haemorrhage on a train 11 years ago, which concurrently led to the discovery of my brain tumour.
I sought further medical investigation for my symptoms more recently because I have been experiencing an intense flare up, triggered by excessive stress and activity. Although I’m still recovering from this experience, where I felt like I was having a stroke (losing sensation in half my face!), I feel like I should achieve some stability again soon.
Fortunately, as it wasn’t an actual stroke, I remain optimistic about the future. The challenge is a mental one.
This was actually a type of hemiplegic migraine, defined as ‘a rare subtype of migraine with aura, characterised by the presence of motor weakness as aura manifestation.’ The motor weakness typically occurs alongside other aura symptoms, including visual, speech, or sensory impairments. In my case, I experienced numbness on the left side of my face, speech difficulties, and a feeling of drowsiness.
Over the years my concerns about the symptoms I was experiencing were dismissed as panic attacks, hysteria and ‘psychogenic’. These responses became overwhelmingly predictable, making me want to throw things at healthcare professionals involved in my care. It didn’t take long to realise that I would receive no real insights from my oncology team, no matter how much detail I provided about the presentation of these strange sensations, forcing me to do my own research to find answers.
The first significant discovery I made, which was not mentioned by anyone, not even my neurologist, was that the anti-seizure medication prescribed for my epilepsy was actually triggering some non-epileptic seizures. Although there was some relief from this revelation, I recognised that it was just one piece of the puzzle. I understood that there was still so much more for me to learn.
The symptoms I experienced were different from the epileptic seizures I had endured in the past. It appeared that these were likely, at least in part, a result of nutrient deficiencies, a consequence of long-term medication use. In my opinion, every patient should be aware of what nutrient deficiencies are associated with different medications and what nutrients are helpful to focus on to better manage seizure disorders.
After addressing this issue, I gradually experienced more relief and eventually discontinued the medication entirely. Despite my best efforts, some symptoms persisted, leading me to understand that there was a deeper underlying issue, even though I had effectively raised my tolerance to the more severe non epileptic seizures.
How I learned about FND
It is only now that I have become aware of FND, following an article I wrote about my experiences with Psychogenic Non-Epileptic Attacks, an unhelpful term because it makes it sound like the ‘attacks’ are psychosomatic, which they can be, but most of the time they aren’t.
After I wrote that article I investigated further and subsequently ended up seeing a neurologist to discuss my recent flare-ups. I've observed that, despite consistently experiencing symptoms at a lower intensity, the level of tolerance varies significantly and doesn’t always align with logical theories.
Suffering the hemiplegic migraine was a particularly alarming incident, which I noted was triggered by exposure to strong cleaning products in a poorly ventilated room. My threshold was already low from stress and poor sleep, leaving me vulnerable. During this episode I experienced an aura, which led me into a daze and resulted in complete loss of sensation on one side of my face accompanied by muscle spasms, with slurred speech that eventually progressed to complete loss of speech (known as speech arrest).
You might think ‘Oh my God, that sounds terrifying!’, and it is, but here is the reality…
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