Not a brief stay on morphine, this was something I hadn’t counted on

Cross-posted from the Neurofeedback Blog

A struggle with sleeplessness and night terrors had almost left me permanently immobilised. The headaches were so bad that I almost lost my smile. I was resistant to drugs and even minimal daily doses of morphine.

“Sleepless” was a polite way of describing the condition I had, albeit one that I saw as a serious and disabling injury. My GP had found me to be medically fit, and after consulting a pain specialist, I was told that I had a problem with “brain fatigue”.

A doctor friend described the various responses to neuroplasticity, which had not quite worked well with me – “I don’t think this is one of those.” I was treated using visual rehabilitation techniques by my GP, and fitted with a headset that connected to a webcam. This worked and I grew accustomed to a sense of electronic and visual touch. These were helpful if I have suffered from my condition. When it began, it had been difficult. There was no feedback, no appointment, nothing to talk about. I could do this myself.

Within the first couple of weeks, however, I felt some physical improvements and from then it became clear that I would need longer-term treatment. My family took the lead. This meant the elimination of pain by wrapping me in a damp gauze bandage when awake, the downloading of my pain information on to my brain, and more intensive physiotherapy. I have suffered from chronic spinal pain for many years, and was very surprised to learn that this condition is more commonly known as selective temporomandibular joint dysfunction, or TMJ. My spinal cord (the actual structure or the nerves that connect the muscles of the spine to the body) had become constricted. This obviously could cause stiffness, pain and constant sharp spasms.

I had thought of myself as able to go about my daily life until this began. I have always had problems with tinnitus (ringing in my ears), but I still went about my daily life. When I began the twitching began with the slightest of contact or walking. We moved house again and I have to imagine I felt something major happening, but nothing could be done about the pain.

The pacing began, adding to my frustrations and even my reliance on painkillers and other medication. The physical pain, especially in my lower back, increased gradually. And I became extremely impatient. This made it difficult to sleep. I tried meditation and meditation training and as I found this exercise difficult, it was abandoned. Learning to sleep well seemed an immense achievement in itself. I would wish I could sleep soundly, but I couldn’t.

I can now face my sleep, not like it is not there. I just work hard at it. I practise mindfulness of myself – the monitoring of the negative and positive thoughts that might stimulate sleep. My actions and how I relate to others increase the flow of my brain’s blood into the sleep centres and my spinal cord. Daily relaxation exercises prevent any discomfort that might leave me tired when I try to sleep.

I have left my recovery to my family and I’m on medication, but it was long time for that. It is a struggle but I can be quite patient. I’m fortunate to have such caring people in my life.

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