Living with cervical dystonia

The visibility, which is its own burden

Unlike most neurological conditions, this one is visible to strangers, and the social self-consciousness that follows is a genuine part of the condition rather than an oversensitivity. People report avoiding social situations, photographs and driving. It is worth naming in the consultation, because it affects quality of life independently of the physical symptoms and because treatment decisions should account for it rather than being made on posture measurements alone.

Living around a treatment cycle

Where botulinum toxin is used, the effect builds over days after each treatment, plateaus, then wears off before the next one, so function varies predictably across the cycle. Planning demanding commitments for the good weeks rather than the tail end helps. Note which sites produced troublesome effects such as neck weakness or swallowing difficulty, because the pattern can be adjusted next time only if somebody knows. Do not extend the interval yourself because you feel well.

Pain, tricks and practical adaptation

Neck pain accompanies cervical dystonia in a large proportion of cases and deserves treating in its own right rather than being accepted as inevitable. Most people discover a sensory trick, such as lightly touching the chin or the back of the head, which temporarily reduces the pulling; using it deliberately is legitimate. Practical changes help: adjusting screen height and driving mirrors, supportive pillows, and physical therapy focused on posture and stretching alongside medical treatment rather than instead of it. One further practical point: physical therapy focused on posture, stretching and strengthening works alongside medical treatment rather than instead of it, and is worth asking about explicitly since it is not always offered. Heat before stretching helps some people, as does a supportive pillow at night, and neither costs anything to try.

About this practice

Clinical Neurology Specialists has been physician-owned since 1998, when Leo Germin, M.D., FAANEM founded it. Five board-certified neurologists and four advanced practice providers see patients at the Las Vegas and Henderson offices, each with its own AANEM-accredited electrodiagnostic laboratory.

Clinical Neurology Specialists is an adult outpatient neurology practice for patients 18 and older. The practice performs no surgery and operates no imaging suite, infusion suite or interventional pain programme, and provides no emergency or inpatient care.