DL describes how he developed seizures, gait problems and sensory sensitivity and some of the things that helped him improve.

My Story from beginning to end

I developed FND in May 2018. It didn’t start with much, besides being under a lot of stress in an incredibly short period of time.

However out of the blue with two seizures back to back (2-3 days apart) where I couldn’t hold my head up was clearly the defining point. Just before the seizure itself was like a shot gun going off at the base of my skull… like the sound of a ligament or tendon snapping. Not to mention shaking and curled up on the floor wondering what the hell was going on.

The A&E Doctor and GP said it’s just a stress reaction and I replied I don’t do stress.

This was followed by a course of diazepam, which didn’t help me, and one night in bed I found my head and shoulders pinned to the pillow. I couldn’t move at all and so I immediately took myself off them, then I was on Sertraline and after 4 months I decided to wean myself of that too….and not go onto anything else.

Throughout all this time I told myself I need to get up and dressed and eat regularly to maintain strength and keep ‘regular’ even if it was just a yoghurt. To break the cycle of being in bed and combat signals of fatigue. Low sugar isotonic drinks have helped with hydration.

So, the October of that year was when I received the FND diagnosis. My symptoms were gait issues – I was incredibly dystonic where my muscles were firing off in waves, non- epileptic attacks, light and sound sensitivity also. (However back in May of 2018 my skin sensitivity was horrendous where water would sting under the running tap and my wife couldn’t touch me……it felt like someone discharging me like static.

Later that month it was suggested by a friend of the family to try Cranial Osteopathy * and this helped calm the body right down, like someone had turned off that internal buzzing. As a result, I seemed to have fewer headaches (just like the pressure of when you first place a swimming cap over your head), reduce brain fog and improved speech. I personally found this helped reduce my seizures and even stop them…. made them more manageable, thus reducing frequency and intensity. I’m just left with cramps now.

But coming off the SSRI though it was tough however the reward was, my mental clarity began to return. If I’m honest sharper and alert and yes manage the condition better.

The Osteopathy also helped with yoga ‘Ujjayi’ breathing techniques (performed for 15mins as part of a bedtime routine) to destress my body and perform certain movements far more easily….the combination of the two certainly helped to relax me as I began to work with the bodily contractions.

Blue control filtered glasses from the opticians helped me with car headlights and over- lit shops. I have an everyday pair for work and a sunglasses pair with a 75% brown tint to help with the autumn/winter glare. This combination I found helped reduce the shock when I had to take them off.** However I also found myself permanently squinting when I wasn’t wearing them either…..so it helped my anxiety when I was out.

Sleep had been an issue, so I found that using thin sheets, helped keep me cool and reduce my night-time sweats which was affecting my quality of sleep.

At bath time, I now always check the temperature with my elbow. This is because I eventually realised I was getting into baths which were too hot. I would then run more hot water in because I felt cold. I would leave the bath feeling stiff which simply didn’t make sense. So, I returned to the bath water, put my hand back in and that’s when I realised.

Trying to get back to work fitness I used my sons weighted vest on occasion, which I guess helped to keep the body firm, and provided a workout without over thinking.

As for fitness I focus on light weight training (like body builders) to help mobility and range of movement. I do limit the duration to 15 mins on the bike and 30 mins of weights and not a penny more otherwise I paid for it the following day. This regime helps me with my job.

The use of Epiclasps and Patella braces helped (for a brief period) with the repetitive strain of the job and I also used a neoprene lumbar support too walk from my car to place of work (12mins) to aid balance. Plus after seeing a local community Physio and reflexologist I began to do 5mins minutes stretches/warm up before the start of my shift and at the end of it as well to free me up.

Feeling comfortable in my body, I begun looking at past life events identifying trauma’s (I’ve plenty misadventures) and the psychology of them, recovery periods (no more superman) and areas of huge repetitive strain to see if I could perform them ergonomically better. The exploration didn’t stop there this also included family, friends and associates.

Even tai chi was very enlightening because I was moving in a way which I was not accustom too.

I’m retraining myself to walk in a variety of situations. I’ve worn trainers most of my life so I embarked on retraining & awareness by spending some time walking in sandals. This was tricky at first but relearning to stand on my own two feet without the overall support of a shoe has been enlightening. Even learning to walk like a model was most interesting because I found that my legs were doing exactly the same thing without over trying.

Finally, a huge turning point was through the contact of FND Dimensions support group. When I mentioned my growing build-up of symptoms and gave my story someone mentioned this https://www.nhs.uk/conditions/sick-building-syndrome/)

So, it was the relocation to a new building with many of my current colleagues when the problems began This is when it all started, the straw that broke the camel’s back. In the end I simply struggled with the buildings layout and likewise I thought I this was being absolutely silly…. but I wasn’t, I knew me.

What was also nice to see was the article on ‘The neurology of the Cuban “Sonic attacks” because this also paved the way to help explain further what I was going through,

because my boss had also read this article. So how I tackled the issue of moving from one building to another obviously built up during that period and this is what I feel triggered my FND.

Thankfully a therapist (a chance encounter, after all it was the 4th person I had spoken to) via the GP – had received training on FND. As we talked and discussed he diagnosed two ‘events’ – complex anxiety immediately followed by PTSD. The anxiety of the move and all its problems & dilemma’s associated and then that first seizure attached to all of that.

This was an important milestone to me because someone believed my version of events. Whereas everyone else was looking for deeper meaning. So, the therapist through our conversations on FND said to me very simply it’s an unconscious learned pattern of behaviour, you can’t fight it or work at against to have to work with it. So with these words I began to reflect and suddenly I began to turn this around day by day.

The result of this he said was to use the technique of dealing with phobias…..little by little exposure. So, I am now able to enter the building without anxiety or fear.

My employer however did allow me to return to my original work environment and I used this time to slowly reintegrate back to work.

DL

• *Editor’s note. Complementary therapies can definitely be helpful to some patients with FND. There isn’t a good evidence base and I can’t recommend any specific treatments – response is often very individual.
• **Editors note. Sensory sensitivity is common in FND. The use of filtered or tinted lenses can improve symptoms when first used, but can also lead to increased light sensitivity over time. Please discuss this with your doctor and optician.