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. It felt as though my body simply would not allow rest. 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, straightening my legs powerfully without warning. Eventually this meant I became wheelchair-bound at home to avoid serious injury.
Every week the GP increased the doses of gabapentin and diazepam in an attempt to find a therapeutic level, but it made little difference. An outpatient neurology appointment was scheduled for October, which felt a long way off. During this time anti-GAD blood tests and an EMG were arranged. However, the focus appeared to remain on possible FND. We researched FND intensively ourselves, but the nature and severity of my spasms and startle reactions did not seem to match what we read. The GP and occupational therapist never mentioned SPS, and I believe the discharge summary had been presented primarily as possible FND. We requested neuro-physiotherapy but were told that FND did not qualify. We were largely left to manage on our own, which led us to try acupuncture, Chinese herbal medicine and other approaches in an attempt to reduce the symptoms. We also funded our own neuro-physiotherapy privately.
Following the early September Bupa appointment, the doctor drafted a letter that recommended swapping from diazepam to clonazepam, as this was better suited to reducing the pain of spasms. Our GP adopted this change. The letter clearly disregarded FND as the explanation, but at the time it appeared to go unheard as we focused on waiting for the October neurology appointment.
Throughout this period, spasms occurred with every urination and bowel movement, which meant I had to use a commode. The spasms were often so strong that the commode would almost tip over. In late August I suffered a head injury after a powerful leg contraction while sitting on the floor. This left me in a heightened state, and shortly afterwards, while urinating, another strong spasm caused me to injure my ribs. The leg contractions then moved to the site of the injury, causing excruciating pain. Over time other injuries followed, including a rotator cuff tear, and the contractions seemed to follow and settle around each new injury site. Even when an injury was almost healed, the contractions would often return to my ribs and stomach.
On several occasions when using the stairs my arms would contract and pull me towards the bannisters with extreme force, almost sending me over them. We had to make modifications to provide continuous handrails on both sides. Even then my brain seemed to know the vulnerable spots and I would still suffer near-catastrophic events. Every morning and night someone had to help me up and down the stairs, and each time I would experience several powerful contractions.
We tried to get out of the house whenever possible. I needed assistance to get through the front door, in and out of the car, and into the wheelchair. Even attending medical appointments was overwhelming. We persisted and tried to remain as positive as possible. One day we went to the beach. I transferred from the wheelchair onto a picnic bench and my wife brought me a small tub of granola. On the first mouthful, as it touched my tongue, my legs contracted violently, firing me out of the bench and onto the bench next to it. I was left suspended between the two with a continuous all-body spasm. It was frightening and we relied on members of the public to assist in getting back up and into my wheelchair.
Startle reactions were triggered by taste as well as touch, noise and emotion, so every time I ate or drank anything I would suffer a spasm. Even sipping from a coffee cup would cause my hand to contract and crush the cup. Even dressing and putting on a t-shirt would result in a startle as the material touched my back or torso.
I became increasingly convinced that this was not FND. The trauma to my mouth from repeated jaw clamping meant my brain would not allow me to open my mouth properly — even trying to eat a biscuit would result in my hand crushing it before it reached my mouth. Of the four lower teeth that had been damaged since my late teens, only one remained between my canines, and the jaw clamps continued to target this last tooth. A good friend who is a dentist visited me at home and, while I was in bed, extracted the final tooth. Remarkably, once it was removed the jaw clamps ceased completely.
The startle reactions remained extremely sensitive, and I needed full-time care. I could not even watch certain things on television because the noise would set off a spasm.
In mid-September a large, pronounced lump the size of a hand appeared between my shoulder blades. We took this to the GP, who assured us it was likely postural and nothing to worry about. We were happy with this reassurance at the time, but we also knew our neurology appointment was only a couple of weeks away, so we planned to ask for it to be checked again to make sure.
What I Would Say to Someone Now
If you are sent home from hospital with a label that does not seem to explain the severity or pattern of your symptoms, and the support offered feels inadequate, trust your instincts and keep detailed notes of what is actually happening day and night. When spasms begin to cause repeated injuries and the contractions start to target the sites of those injuries, or when even the simplest daily activities — eating, drinking, dressing or using stairs — become dangerous and humiliating, it is a clear sign that the underlying problem is physical and progressive. Home modifications and full-time care from a family member can become essential very quickly. Trying to maintain some normality outside the house can bring both hope and harsh reminders of how little control remains. When a new physical change such as a lump appears and is dismissed as postural, it can feel reassuring in the moment, especially when a specialist appointment is close. Looking back, the cycle of spasm-induced injuries, the constant startle reactions to everyday sensations, and the GP’s reassurance about the lump were missed opportunities for earlier investigation.
