PLEASE NOTE: The guideline regarding taking a bath in this presentation (Slide 20, Pt. 8) is intended for people whose epilepsy is well controlled.

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1 PLEASE NOTE: The guideline regarding taking a bath in this presentation (Slide 20, Pt. 8) is intended for people whose epilepsy is well controlled. Epilepsy Ireland would advise in this case keeping water levels low, keeping the door unlocked, and letting someone know that you are taking a bath. If you are in any doubt, taking a shower is preferable.

2 Exploring Epilepsy: Health and Lifestyle Issues Peter Widdess-Walsh Consultant Neurologist UPMC Beacon Hospital Dublin, Mullingar, Clane

3 Outline What is health and lifestyle? How to measure quality of life The Institute of Medicine report on Epilepsy Lifestyle issues and how to approach them

4 Health What is health? Sense of well-being Physical Fitness, nutrition, weight, hygiene, sexual health, avoidance drugs and alcohol Mental Ability to enjoy life, approach adversity, cope with stresses, security

5 Lifestyle A way of living that affects our health To cope with your physical, psychological, and social environment Self image Motivations, needs, and wants (of individual, ie you)

6 It s not just about seizures Quality of life Bone health Weight Sleep Diet Alternative treatments Mood Memory Social Work Sport Travel Relationships Driving Alcohol/Drugs A whole-person perspective

7 Quality of Life

8 How do we measure QOL? QOLIE-31 Quality of life in epilepsy inventory Mood, energy Social/lesiure effect Cognitive function Driving Seizure worry Medication effects Development and cross-cultural translation of a 31-item quality of life questionnaire (QOLIE-31) 1998 Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann BP Epilepsia 1998; 39: 81-88

9 Is epilepsy different? QOL lower than for other chronic diseases Comorbidities more prevalent than in other chronic diseases Reasons Seizure severity Medication side effects Underlying brain involved in the epilepsy

10

11 Institute of Medicine Report Highlight: By the Numbers 65 million Individuals in the world have epilepsy 33 million The population of Canada. 54 million The population of France. 150,000 New cases of epilepsy in the United States every year. 1 in 10,000 Newly diagnosed epilepsy patients that will die from sudden unexpected death in epilepsy (SUDEP). 38 Drugs that are available for epilepsy use world-wide. 7th The rank that epilepsy merits on the global burden of mental health, neurological and substance use disorders worldwide after Alzheimer s, schizophrenia, and depression and alcohol use; but ahead of migraine, panic disorder, insomnia, post-traumatic stress, Parkinson s disease, and multiple sclerosis. 2 Number of antiepileptic drugs that needs to be tried and failed in order to be considered drug resistant to epilepsy. 1 is the number of daytime seizures needed to trigger driving restrictions in every state in the U.S. 32 days is the average waiting time for a new patient to see an epilepsy specialist. 25 days waiting time on average for an inpatient evaluation to an epilepsy monitoring unit in the US. 166 Number of epilepsy centers in the United States. 1 in every 26 Americans will develop epilepsy over the course of their lifetime. by Joseph I. Sirven, MD Editor-in-Chief, epilepsy.com Last Reviewed: 6/20/2012

12 Institute of Medicine Report 2012 Epilepsy across the spectrum: promoting health and understanding Examined Public health dimensions of the epilepsies Misperception and misinformation leading to stigma recognized as a major problem

13 IOM report Access to health care Community resources Access to knowledge Improved public understanding Address co-morbidities Early identification of co-morbidities Early identification of refractory epilepsy

14 IOM report 2012 Education Health care providers Patients with epilepsy Their families The general public

15 Engagement

16 Mental Health Common 30-35% Mood, anxiety, ADHD Children and adults Associated with reduced response to anti-seizure medications Uncover and treat as early as possible Screen for co-morbidities for early intervention Don t be afraid to treat ie medications Address medication side effects

17 Weight Lifestyle dependent less active -> more weight Less healthy lifestyle Cardiovascular risk Anti-seizure medications Weight gain : Valproate, Pregabalin, Gabapentin, Oxcarbazepine, Carbamazepine Weight loss: Topirimate, Zonisamide, Felbamate Monitor weight

18 Sleep and epilepsy

19 Sleep and epilepsy Seizures and EEG activity more common in sleep Certain types of epilepsy happen in sleep BRE, NFLE Sleep deprivation effect Obstructive sleep apnea Disruption of sleep by EEG discharges poor quality sleep daytime effects Anti-seizure medication effects Effect comorbidities on sleep Sleep disorder/parasomnias

20 Sleep Screening for sleep problems Polysomnogram ENT Education Sleep hygiene Sleep aids Behavioural methods

21

22 Melatonin Natural body hormone Synthetically made Adjusts sleep-wake cycle Shortens time to sleep Also used in jet lag

23 Travel Bring extra medication Bring your prescription Long haul flights jet lag Sleep Be aware of time differences Identity bracelet Travel insurance

24 Alternative treatments Acupuncture Relaxation therapy Yoga/Reiki Biofeedback Neurofeedback Homeopathy and herbal medicine

25

26 Herbal therapies Ailanthus altissima (Tree of Heaven) Artemisia vulgaris (mugwort) Calotropis procera (calotropis) Cannabis sativa (marijuana) Centella asiatica (hydrocotyle) Convallaria majalis (lily of the valley) Dictamnus albus (burning bush) Paeonia officinalis (peony) Scutellaria lateriflora (scullcap) Senecio vulgaris (groundsel) Taxus baccata (yew) Valeriana officinalis (valerian) Viscum album (mistletoe)

27 Side effects Worsening of seizures ephedra, gingko, ginseng, evening primrose, borage, and essential oils such as eucalyptus, fennel, hyssop, pennyroyal, rosemary, sage, savin, tansy, thuja, turpentine, and wormwood. Direct side effects rash, digestive Dangerous in overdose Interaction with antiseizure medications St. John s wort, Gingko, sedating herbs

28 Bone health

29 Bone health data Fracture risk 2-6 times greater Anti-seizure medications phenytoin, carbamazepine, phenobarbital, valproate Starts 1-5 years after treatment Other risks immobility, alcohol, caffeine, smoking Calcium 1000mg, Vitamin D 800u DEXA 5 years after treatment, every 2-3 yrs if on AEDs

30

31 Driving

32

33

34 Conclusion You might not be able to control that you have epilepsy but you can choose a healthy lifestyle Seek help Live well! "The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly." Buddha

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