05 | The Spasms Take Over
SPASMS, FALLS AND STARTLE REACTIONS
In the weeks after the second discharge my condition continued to deteriorate rapidly. During the day even the slightest touch, noise or emotional upset would trigger severe startle reactions and powerful spasms. At night, as my body tried to relax into sleep, the spasms would intensify, preventing me from drifting off. I was experiencing 30 to 40 full-body spasms each night with almost no sleep from July onwards.
My wife was signed off work to care for me full-time as I was completely debilitated. We had home visits from the GP and occupational therapist, but these soon reduced to weekly telephone consultations with the GP. As the spasms and startle reactions worsened, so did the falls. I could only move around the house by holding onto furniture. The moment I was in a slightly vulnerable position my legs would be zapped by a spasm and I would fall like a tree. I lost the ability to put my arms out to break the fall, so the injuries started to mount. Strong, sudden leg contractions also began. Eventually this meant I became wheelchair-bound at home to avoid serious injury.
Every week the GP increased the doses of gabapentin and diazepam, but it made little difference. An outpatient neurology appointment was scheduled for October, which felt a long way off. The focus appeared to remain on possible FND. We researched FND intensively ourselves, but my symptoms did not seem to match. We requested neurophysiotherapy but were told that FND did not qualify. We were largely left to manage on our own.
Following the early September Bupa appointment, the doctor recommended swapping from diazepam to clonazepam. Our GP adopted this change. The letter clearly disregarded FND as the explanation, but at the time it appeared to go unheard as we waited for the October appointment.
Throughout this period spasms occurred with every urination and bowel movement. In late August I suffered a head injury after a powerful leg contraction. Shortly afterwards another spasm caused me to injure my ribs. The contractions then moved to the sites of the injuries. On several occasions when using the stairs my arms would contract violently, almost sending me over the bannisters. We fitted continuous handrails on both sides. Every morning and night someone had to help me up and down the stairs.
We tried to get out of the house whenever possible, but even simple activities were difficult. Startle reactions were triggered by taste as well as touch, noise and emotion. Even sipping from a coffee cup or putting on a t-shirt would set one off. Of the four lower teeth damaged since my late teens, only one remained, and the jaw clamps continued to target it. A good friend who is a dentist visited me at home and extracted the final tooth while I was in bed. Remarkably, once it was removed the jaw clamps stopped completely.
In mid-September a large, pronounced lump the size of a hand appeared between my shoulder blades. The GP reassured us it was likely postural. We were happy with this at the time, but we also knew our neurology appointment was only a couple of weeks away.
What I Would Say to Someone Now
If you are sent home with a label that does not explain the severity of your symptoms, trust your instincts. When spasms start causing injuries and everyday activities become dangerous, it is a clear sign something more is happening. Home modifications and full-time family care can become essential very quickly. Looking back, the weeks of self-managing while waiting for the October appointment were exhausting, but they also helped us realise we needed to push harder for the right investigations.
Technical Note
Hyperekplexia (exaggerated startle response) triggered by touch, noise, taste, and emotion, along with continuous night-time spasms and injury-causing contractions, are hallmark features of PERM. The development of a visible thoracic lump (later confirmed as a T5 fracture) and progressive kyphosis result from powerful paraspinal muscle spasms pulling the spine into flexion. Significant weight loss is common due to muscle wasting, poor nutrition, and high energy expenditure from constant spasms.
