Functional Neurological Disorder - FND Hope
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Let me introduce myself

Let me introduce myself. My name is Ollie. Later this year I shall turn fifty. I live in the Netherlands and am currently in the process of re-integrating into society which is not going entirely smoothly. I live in sheltered accomodation with two other people. After a two and a half year relationship, I am now single.

The first eighteen years of my life were tumultous. I was mentally abused at home and for many years I was also sexually abused outside. I moved out at eighteen. I got my own place and could finally start living a normal life. Six months later, I was visiting some friends when I suddenly seized up completely. I was able to hear what was being said but I could not move or even think. It was a frightening experience. My friends thought I had fallen asleep (it was late at night). They laid me down on the sofa and went to bed. And there I was, totally alone and scared out of my wits. It took me about six hours to realise what was happening to me. I struggled hard to move and bit by bit I regained control over my body and got back some clarity of thought. However, when I tried to say something to the cat I realised I had lost the ability to speak. I panicked. Later that day I went to see my GP and got a referral to a neurologist.

In the end I spent three months in hospital and was sent home without a diagnosis. In the time that followed, I kept getting the same fits/blackouts on a regular basis. I got one during a 48 hour EEG scan and the machine recorded a brain activity identical with sleep. They were exactly the same brain waves. But I was totally conscious and heard everything. The neurologist said, literally, we have no idea what it is, we have never seen anything like it before. It does look, they said, like some kind of coma.

This was in 1986. It went on like that for a year and then suddenly stopped and I did not have another fit for four years. And then, out of the blue, they started again.

In 1998 I was finally given the diagnosis of conversion disorder. In those years I would get six short episodes per day but then years went by with not a single one. I was told it was to do with longterm stress and various additional sources of anxiety, plus all those issues dating back to my youth. So it was exclusively psychosomatic. I have always wondered if that was indeed possible. I'm still wondering - because when I lose consciousness like that for more than eight hours, surely there is a chance that my heart and lungs will cease to function. I have already had to be resuscitated a few times. Is it possible that a person's mind is so powerful that it can deliberately cause those functions to stop?

2017-2018

The last nine months the seisures have been relentless. It's got to the point that, from the end of December onwards I get them every day, sometimes twice a day. I'm now seeing a psychologist with a view to investigating brainwaves or certain chemicals in the brain that undergo a change during an episode. More on that in the next posts. All this is sapping the strength I need to carry on, to deal with the other problems life throws at me. I'm constantly having to pick myself up over and over again. This means more tension, more stress and then the 'emergency brake' steps in as it were. I don't know how else to call it.

At the moment I'm trying to read as much as I can find on the subject of FND (and whatever it was called before).

I have tried to keep it as brief as possible and will of course be happy to answer any questions you might have for me.

Grtz.

Ollie_nl

ps thanks to Gypsi for translation.

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“All this is sapping my strength.” I can relate.

I never had a single alarming symptom before FND set in back in February, 2017, then they all set in at once. Over night, literally.

For me, FND is a gauge of stress. I’ve never had a good sense of when I was under too much stress before. When I talk about my life with others, I was clearly doing more than I should have with my mind and body. You referred to the “emergency brake,” and FND is exactly like that for me. When I have a seizure or other symptoms that are more than my baseline (these days I always have some symptoms), I know that it’s time to rest. Doctor visits or one-on-one visits with people are the most taxing events; I plan my week around them because I know they will wreck me for days prior and following the event. I find that I cannot do anywhere near what I used to, but I follow a rigid schedule each day; the regularity and lack of surprises helps. I’m unsure if I’m “accumulating” a reserve of strength; these days, it doesn’t matter as much as regulating my symptoms.

I have random muteness, too. I use the accessibility feature on my phone or computer to read what I type. I also take a day of silence now and then. In my experience, FND hates to be “forced” to do anything, so by not even *trying* to speak, I give those parts of my brain that are struggling a break.

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