Raising awareness of functional neurological disorder

In June 2021, Warlingham resident Elaine Miller started experiencing a series of alarming symptoms.

“I felt unwell and disorientated, and had to keep sitting down, wherever I was.Then I began shaking a little bit, which was followed by collapsing to the floor.”

Four months later, she was diagnosed with functional neurological disorder (FND), which is caused by a problem with the functioning of the nervous system and the way the brain and body sends and receives signals. Although relatively common, many doctors aren’t trained in these types of disorders, and it is only fairly recently they have begun to be properly researched. Elaine is thankful that she was referred to a neurologist who had a good understanding of the condition.

Her collapses occur without warning, but on other occasions she is able to sit or lie down when she senses an attack coming, something she refers to as an ‘episode’. Both situations are frightening:

“I never lose consciousness. I can see and hear everything going on around me, but my body goes rigid. I can’t move or speak, and I can also stop breathing for several seconds at a time. Sometimes I suffer double incontinence. It feels like somebody is holding my insides and twisting them, and grabbing my neck tightly.”

Mistaken symptoms

Her symptoms are often mistaken for other conditions, which can be frustrating:

“Because I’m shaking and unable to communicate, people often think I’ve got epilepsy, or I’m having a stroke, or that I’m drunk.”

Elaine’s collapses are often in public. While most people who witness them rush to assist her, others' reactions can be less helpful.

“The worst time was when I collapsed on a pavement, and fell into the road. The vehicles didn’t stop…they just drove round me. It was terrifying: I thought one would just drive over me, and I couldn’t do anything about it. Thankfully, a woman nearby saw what had happened and stopped the traffic.”

Undergoing tests

In April, Elaine’s heart rate and blood pressure were monitored during a tilt table test at St George’s Hospital. Results showed that, along with FND, she also has postural tachycardia syndrome (PoTS), an ‘abnormal increase in heart rate that occurs after sitting up or standing’. She is now taking blood pressure tablets, as the test showed that her blood pressure drops dramatically the moment a collapse or episode starts. She continues to see her neurologist regularly in the hope of finding a cure.

Along with FND and PoTS, Elaine has to contend with fibromyalgia, too. This was diagnosed three years ago and which, although mild, is aggravated by her collapses.

Despite everything, her primary concern is still for others:

“What bothers me most is that my collapses are scary to see. People who try to help me get upset because they can’t really do anything.”

The falling lady

Elaine says that losing much of her independence is one of the hardest things to cope with. But, although living with such a debilitating condition can cause real feelings of despair, her sense of humour helps her through:

“That’s part of me FND hasn’t taken away, and it’s how I deal with everything. I call myself the Falling Lady of Warlingham when I post on Facebook: I spend so much time lying down that people don’t recognise me standing up!”

More information about FND can be found here.

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