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The Whole Picture – Epilepsy Care and Management

A therapeutic alliance and an interdisciplinary approach work well for patients with epilepsy.

In over 85 per cent of cases,
epilepsy can be treated successfully.

Epilepsy was once considered a manifestation of gods, demons, spirits and their disaffection with humankind. Its treatment in ancient times involved a range of rituals and exorcisms. In the 19th century, as medical science evolved, epilepsy came to be regarded as a disease of the brain but continued to be associated closely with the mind and was often treated in asylums by doctors, who were as concerned with mental illness as they were with epilepsy.In the first part of the 20th century, clear associations between the mind and epilepsy began to emerge from patient settings. That behaviours could be a manifestation of underlying epilepsy (epileptic equivalents), precede a seizure (aura or warning), and follow seizures (post-ictal states) all became part of neurological lore. That psychological states (hysteria) could manifest with seizure-like episodes, ‘psychogenic seizures’, or ‘pseudoseizures’ also were described. Anxiety, depression, psychosis, obsessions, hysteria… a wide range of mental states being a prelude to seizures, accompanying silent seizures, or following seizures were described by European neuro-psychiatrists. However, despite this rich medical literature of over two centuries, the relationship between epilepsy and the mind remains much misunderstood as also the treatment of disorders thereof.Fourteen-year-old Miss V, with a childhood history of febrile seizures, suffered from repeated episodes of jerking and being ‘absent’ that tended to cluster around her menstrual periods. She also had falling academic grades, mood swings, anxiety, disturbed digestion and poor sleep. A good student whose childhood epilepsy had been well controlled, she was bemused by the sudden outbreak of symptoms around menarche that had over a year substantially reduced her quality of life.Consultations with an array of specialists and close observation by her intelligent and attentive parents led to the understanding that the problem was not easily responsive to conventional medication; was closely linked to stress, both academic and familial; clustered around her menstrual periods; was unpredictable and at times subtle (a jerk or two while on the dining table that could otherwise pass off as a teenage mannerism); could affect her on several days in a month. Indeed, her father, a diligent record keeper, could identify as many as 50 to 60 events in a given month occurring in five to six clusters.A comprehensive care approach for such a patient would comprise:A detailed interdisciplinary history: general medical, menstrual, neurological, psychiatric, developmental, social, familial and nutritionalA detailed treatment history: drugs, doses, side-effects, impact of treatment. Investigations to exclude co-morbidities and complications.Establishment of a therapeutic alliance with the family: A firm commitment to work together with transparency, mutual respect and common goals.An interdisciplinary therapeutic programme: nutritional and medical, psychological counselling, yoga therapy, naturopathic and Ayurveda therapies for digestion, sleep and peri-menstrual symptoms.A carefully graded approach to drug treatment of epilepsy with commitment to identify the ideal drug combination and the therapeutic window thereof.After a similar approach for Miss V, one year later it was found:Episodes diminished from 50 to two to three a month.Attacks were brief and had limited impact (a couple of hours at best).Peri-menstrual periods were bearable.Mood swings and anxiety had remitted; sleep and appetite improved greatly; stress levels fallen.Is compliant with medication and regular; tolerated her drug doses well.A therapeutic alliance and interdisciplinary approach (a recommended global best practice model of epilepsy care*) appear to have worked. Miss V is firmly on the road to recovery.FAQsWhat is epilepsy? A short circuit in the brain’s electrochemical activity is a seizure. A tendency to have unprovoked seizures is epilepsy.What causes epilepsy? About 10 per cent of all patients have clear genetic causes. In others, brain trauma (in pregnancy or later life), infections (cysticercosis and tuberculosis), inflammations, tumours; brain scarring due to poor blood supply (ischemia) and degeneration contribute.Can epilepsy be treated? In over 85 per cent of cases, epilepsy can be treated successfully (either complete absence of seizures or a substantial reduction). A range of drugs, surgical treatments and brain stimulation procedures are available.Can a person with epilepsy lead a normal life? Certainly! People with epilepsy can study, hold responsible jobs, get married, have children, play sport and engage in social, cultural activities. Limitations if any are related to driving a motorised vehicle (law varies across countries), taking part in adventure sports, swimming without supervision etc.Can epilepsy be prevented? Epilepsy is not contagious. Prevention starts at conception with good maternal health and antenatal care. Good care of the newborn, appropriate nutrition, prevention of infections, head injuries especially road traffic accidents, early diagnosis and treatment of seizures are the cornerstones of prevention.What to do when a person has a seizure? Put them on their side comfortably (the recovery position), remove all dangerous objects (those that are sharp, emit heat etc.), provide a soft head rest; hold them gently until the event is over (seconds to minutes). Do not try and insert your hands into their mouth; do not hold them forcefully or try to interrupt the seizure. Giving them keys or metal to hold has no medical impact. If a seizure is prolonged, call an ambulance immediately.

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Elders Expert Blogs

Beyond Medication

Modern medicine cannot, on its own, address the care needs of several hundred thousand people confined to their beds and to wheelchairs, due to illness and injury.

Nothing strikes greater fear in our hearts than the prospect of permanent medical disability. Sadly, with humans living longer (but not necessarily healthier) lives, multi-morbidity and chronic medical disability have become common. When struck down by disability, the prevailing medical model provides both for surgical correction and symptom relief through drugs and procedures. However, with a large proportion of patients either failing to respond adequately, or indeed rejecting those conventional options, there is a need to look beyond.Mrs. L, an 80-year-old housewife, was rushed to the hospital after suffering a brain haemorrhage.

Unconscious, paralysed on the left side, unable to speak and swallow, she needed ICU care with the ventilator (and tracheostomy) to help her breathe and a feeding tube to receive fair nutrition. Three weeks later, when she was transferred to rehabilitation care, Mrs. L was barely conscious; still had a tracheostomy tube, feeding tube and catheter in place, remained severely paralysed on the left side (not even a flicker of muscle contraction), and suffered from excessive throat secretions and severe chest congestion.

After a comprehensive assessment by the rehabilitation physician, with inputs from the chest and ENT physician, her medication was optimised and intravenous steroids to kick-start brain function were introduced. She also received an integrative therapy programme, including twice daily sessions of physiotherapy in the form of nerve and muscle stimulation, graded passive and active exercises, combined with manual interventions such as acupressure, acupuncture and reflexology. Over two weeks, Mrs. L responded well to this treatment. Her consciousness and comprehension improved, and she began to respond to and obey simple commands. She began to sit with support, and then her chest secretions reduced. She regained urinary sensation and gradually her catheter was removed. She started to show response in the paralysed limbs; she stood with support; even walked a few steps. However, there was persistent left vocal cord palsy and the tracheostomy removal failed. So the feeding tube had to be left in place. We started work with her family, helping them cope with her condition and setting graded, realistic goals.She was discharged to home care and nursing and continued to undergo integrative therapy. Sessions of Ayurveda therapy in the form of oil massages and medicated foments were now introduced to improve limb power and movement along with continued physical and manual therapy procedures. The psychological therapist engaged her in cognitive therapy and motivational enhancement, apart from helping her caregivers deal with their distress. Over six weeks, she began to walk with support, express herself with gestures and swallow small amounts of soft solids. Apart from a minor bout of aspiration pneumonia in the interim, requiring brief hospitalisation, she made good progress.When Mrs. L returned to the hospital for a team review, her tracheostomy tube and feeding tube were removed. She regained her ability to speak, albeit hoarsely. Her chest was clear and she was progressively able to swallow more each day. Her gait had improved and she walked well with support. She appeared bright, sprightly and ready to engage with the world, even presiding over her family’s “harvest festival” celebration. Today, this determined lady continues weekly sessions in the pursuit of complete wellness.Mrs. L’s is an inspirational story. While modern medicine saved her life, it could not possibly, on its own, give her back “quality of life”. The integration of several medical therapies, as a rehabilitation model, succeeded in doing just that. Involving the use of trained personnel and a range of techniques and therapies — both ancient and modern — have great relevance in our culture. Modern medicine at the fountainhead of such treatment is crucial, not least because people with medical disability are especially vulnerable and need close scientific supervision. However, modern medicine cannot, on its own, address the care needs of several hundred thousand people confined to their beds and to wheelchairs, due to illness and injury. With an estimated 125 million elderly in India, slated to grow to 176 million by 2026, 30 per cent of whom have chronic medical conditions, we must clearly look beyond, at holistic care.

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Bipolar Disorder Elders Patient Stories

Falling men, Failing Neurons

Clinical Autonomic Dysfunction with a plethora of systemic complaints often goes unrecognised. But the right diagnosis and treatment can help speed up the recovery process.

Most of us take standing up for granted. Only when we cannot stand for some reason are we reminded of its importance. Oliver Sacks, the legendary neurologist and author, addressed this rather poignantly in his story On standing on one leg, which documented his experiences after a fall in the Alps. The human species started ‘standing on two legs’ rather late in its evolution. As a consequence, body mechanisms that enable standing — for example ‘preventing all the blood from pooling in our feet, thanks to gravity’ — developed rather late. A complex neural network rich in chemicals and hormones controls postural changes in blood pressure, as it does heart rate, body temperature, digestion, urinary and sexual function… a host of human activities performed, often unthinkingly. This complex network — the autonomic nervous system or ANS — is ‘autonomic’ i.e. ‘independent’ of our conscious control, yet to some extent modifiable. For example, we can hold our urine until we reach the bathroom, well, most of the time!V, a 64-year-old retired headmaster, came to us with a rather peculiar problem. For almost a year, he had been unable to stand up. He would collapse and transiently lose consciousness. Starting with giddiness on standing up, the problem had progressed to intolerable vertigo and eventually episodes of syncope (fainting), leaving him most comfortable when flat on his back. Not surprisingly, V had taken himself to bed, occupying supine repose, in which he was most comfortable. Not surprisingly also, this rendered him severely disabled, dependant on his wife of almost four decades, for all activities of daily life.

When we first met V, he was petrified of standing up, even with our persuasive encouragement and promise of medical support. We had to, therefore, admit him to a partner hospital, and begin attending to him there. Our detailed 360° evaluation confirmed that he had a rare but disabling condition — progressive autonomic failure — with the background of long-standing depression, under treatment with psychotropic medication and a history of generalised seizures (in remission). He had many symptoms of clinical autonomic dysfunction: his blood pressure when taken lying down was 90/50 mmHg; when he stood up, however, his blood pressure plummeted to 50/? — the diastolic so low that it was unrecordable. His postural vertigo, variable heart rate, altered patterns of sweating, pain in the neck and shoulders (coat hanger distribution), unpredictable bowel movements were all symptomatic of his underlying condition: Clinical Autonomic Dysfunction. In addition V had slurred speech and diminished swallowing ability without apparent neuromuscular weakness.

Following diagnosis, V was started on one of the few drugs that can help prevent postural fall in blood pressure. He also was enrolled into our interdisciplinary and integrative rehabilitation programme for autonomic dysfunction. Extended physiotherapy sessions including passive mobilisation, electrotherapy for pain, postural exercise paradigms, gait and balance training, and active exercise protocols delivered over three weeks. He also received acupuncture targeting his neurological symptoms and therapeutic mud for his gastro-intestinal symptoms. Sessions of Jacobson’s Progressive Muscle Relaxation as well as supportive counselling to build confidence and motivation and address caregiver distress were included. At the end of the treatment period, aided no doubt by both drug and alternative therapy approaches, V was back on his feet.

Clinical Autonomic Dysfunction with a plethora of systemic complaints often goes unrecognised as a medical diagnosis; so little being known about ANS and it being difficult to test. Many patients with autonomic symptoms are labelled as ‘psychosomatic’ and do not receive necessary medical attention, leading to avoidable delays in treatment. Indeed the ANS is perhaps one of the last frontiers of neuroscience, requiring significant research focus, as concluded in the recent TS Srinivasan-NIMHANS Conclave on the subject. Not just neurological and psychiatric, ANS symptoms can present with vertigo (ENT), cardiac (heart), respiratory (lungs), gastroenterological (abdomen), genitourinary (urinary and sexual), orthopaedic and rheumatology (bones, joints, musculoskeletal) complaints. A clinical diversity that can test the most accomplished physicians. While falling men like V could well have failing neurons, we also learn from him that people with a plethora of unexplained medical symptoms do deserve an ‘autonomic’ approach and may well benefit from therapy and rehabilitation.

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