Living with Epilepsy

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Living with Epilepsy

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Define Seizures and Epilepsy Recognize common seizure types Describe types of seizure emergencies Describe side effects and risks of seizures, medicines and other treatments for epilepsy Objectives: Medical

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Seizure is a symptom of a disturbance in the electrical activity of the brain Epilepsy is a disorder characterized by tendency to recurrent, unprovoked seizures Recurrent - 2 or more Unprovoked - not caused by other known medical problems EPILEPSY = SEIZURE DISORDER What is Epilepsy?

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Almost 3 million Americans have epilepsy, > 65 million worldwide 1 in 10 people will have a single seizure in their lifetime 1 in 26 people will develop epilepsy in their lifetime 200,000 people with newly diagnosed epilepsy each year Epilepsy is the 4th most common neurological disorder after stroke, Alzheimer’s and migraine Epilepsy is a Common Problem

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For approximately 70% of people who are diagnosed with epilepsy the cause is unknown For the remaining 30%, the seizures are symptoms of a known cause (i.e., lesions, trauma) What Causes Epilepsy?

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Brain trauma Brain lesions (i.e. tubers, tumors) Poisoning (lead, alcohol, drugs) Infections of the brain (i.e. meningitis, encephalitis) High fever Brain injury at birth Congenital malformations Causes of Symptomatic Seizures

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Seizures at an early age (starting before age 1 is highest) Neurodevelopmental delays Intellectual disabilities and cerebral palsy Children can outgrow epilepsy – may be seizure free and off medications as adults Some children have more than one type of seizure About 2/3 of children have complete or almost complete seizure control when they take medication as prescribed Children with Epilepsy

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Seizure Triggers & Precipitants Missed or late medication Change in medication Sleep deprivation Hormonal changes Alcohol, recreational drugs Drug interaction Fever or illness Specific stimuli Flashing lights Hyperventilation Sudden loud noises

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Seizure Classification Generalized Seizures Involves whole brain Convulsions, staring, muscle spasms, and falls Most common are absence & tonic-clonic Focal Seizures Start in one part of brain Symptoms relate to the part of the brain effected

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Aura – First symptom of a seizure, often called a ‘warning’. Most commonly seen with focal seizures. Ictus- What is seen/felt during a seizure Postictal- What is seen/felt after the seizure, until the brain recovers to baseline Phases of a Seizure

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A sudden hoarse cry Loss of consciousness May fall if standing Muscles become tonic or stiff Convulsions (stiffening of arms and legs followed by rhythmic jerking) Shallow breathing and drooling may occur Possible loss of bowel or bladder control Occasionally skin, nails, lips may turn blue Generally lasts 1 to 3 minutes Usually followed by confusion, headache, tiredness, soreness, speech difficulty Tonic-Clonic Seizure

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Pause in activity with blank stare Brief lapse of awareness Possible chewing or blinking motion Usually Lasts 1-10 seconds No postictal phase May be confused with: Daydreaming Inattentiveness/ADHD Absence Seizures

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Myoclonic – brief muscle contractions, may occur singly or in clusters, affect certain muscle groups, or one or both sides of body Tonic - stiffening or posturing of body Atonic (drop attack) – loss of tone, may result in drop of head, trunk, or whole body Other Forms of Generalized Seizures

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Consciousness is not impaired Involuntary movements (isolated twitching of arms, face, legs) Sensory symptoms (tingling, weakness, sounds, smells, tastes, visual distortions) Psychic symptoms (deja vu, hallucinations, fear, anxiety, “a feeling they can’t explain”) Duration is usually less than 1 minute May be confused with: acting out, mental illness or psychosomatic illness “Simple” Focal Seizures

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“Complex” Focal Seizures Altered awareness Blank stare/dazed look AUTOMATISMS (picking at clothes, lip smacking, chewing) Nonsensical speech or lip smacking Clumsy or disoriented movements Aimless walking Picking things up Often lasts 1 to 3 minutes Often followed by tiredness, headache or nausea May be confused with: Drunkenness or drug abuse Aggressive behavior

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Secondarily Generalized Seizures Focal seizure that spreads to involve entire brain May spread rapidly or occur after a typical focal seizure

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MOST SEIZURES ARE NOT MEDICAL EMERGENCIES Basic first aid may vary depending on whether there is a change in awareness or consciousness No first aid may be needed for absence seizures or seizures with no loss of awareness Do not give anything by mouth until the student is back to normal state and able to swallow normally Routine First Aid

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Speak softly and calmly Guide away from potentially harmful objects such as tables, chairs and doors Allow for wandering in a contained area If lasts 5 minutes beyond what is routine for that person or another seizure begins before full awareness is regained, call 911 DO NOT restrain or grab (may result in combativeness) DO NOT shout or expect verbal instructions to be obeyed First Aid – Focal seizure

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Protect from potentially harmful objects Observe and time events: a seizure lasting more than 5 minutes is a medical emergency, Call 911 Ensure airway is unobstructed Cushion and protect head Turn person on one side Remain with person until fully conscious DO NOT put anything in mouth DO NOT restrain First Aid – Generalized tonic clonic seizure

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Seizure Emergencies Potential emergency- changes in typical seizure clusters or frequency Actual emergency – status epilepticus; a prolonged seizure; seizure lasting more than 5 minutes is a medical emergency Injuries or Adverse Events Physical injuries Delayed or unrecognized complications of seizures, i.e. aspiration pneumonia, head trauma, fracture Serious treatment side effects Worsening of comorbid conditions Type of Emergencies

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Commonly used medications to abort a prolonged seizure or seizure cluster include: Diazepam – rectal formulation Clonazepam - orally disintegrating tablet Lorazepam - liquid Midazolam – nasal spray Vagal nerve stimulator – magnet swipe Emergency Medications

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Definitions may vary, most commonly considered to occur with: One tonic-clonic seizure lasting 5 minutes or longer Multiple seizures without recovery to baseline between events Convulsive Status Epilepticus

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Death can occur during a seizure or due to complications from a seizure The most common form of death in epilepsy is SUDEP (Sudden Unexplained Death in Epilepsy) Occurs in someone known to have epilepsy, in the absence of an obvious cause for the death 1/1000 people with epilepsy per year die from SUDEP – less common in children Risk factors include convulsive seizures, multiple medications, early age at epilepsy onset Death in Epilepsy

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Events that look like seizures but on EEG monitoring have no association with abnormal electrical discharges EEG monitoring can be the most effective way of diagnosing events Can be caused by a variety of physical or psychological factors Non-Epilepsy Seizures or Events

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Before 1993, drug choices for epilepsy were limited Since 1993, many new products Approximately 60-70 % of those with newly-diagnosed epilepsy become seizure free on medication About 1/3 of people with epilepsy have seizures that are not controlled by medication Effectiveness of Antiepileptic Drugs (AEDs)

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Older AEDs Carbamazepine (Tegretol, Tegretol XR, Carbatrol) Chlorazepate (Tranxene) Clonazepam (Klonopin) Ethosuximide (Zarontin) Phenobarbital Phenytoin (Dilantin, Phenytek Valproic acid (Depakene) Valproate sodium (Valproate)

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Medications (AEDs since 1990) Felbamate (Felbatol) Tiagabine (Gabitril) Levetiracetam (Keppra, Keppra XR) Lamotrigine (Lamictal, Lamictal XR) Gabapentin (Neurontin) Oxcarbazepine (Trileptal, Oxtellar XR) Topiramate (Topamax, Trokendi XR) Zonisamide (Zonegran) Pregabalin (Lyrica) Vigabatrin (Sabril) Lacosamide (Vimpat) Rufinamide (Banzel) ACTH (Acthar) Clobazam (Onfi) Retigabine (Potiga) Perampanel (Fycompa)

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Side effects can be unpredictable. Some are dose dependent, others occur regardless of dose Newer medications generally have fewer cognitive effects Behavior and mood changes are often difficult to sort out and are not necessarily dose-related Long term effects are unclear, but even mild side effects can have a significant impact Report any physical, cognitive, mood or behavioral changes to student’s family and to health care provider as requested Side Effects Overview

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Common Side Effects Dose-related/toxic: Blurry vision Dizziness Lightheadedness Sedation Slowed thinking Feeling disoriented Coordination problems Unsteady walking Drug-related: Cognitive problems Fatigue Weight gain or loss Cosmetic – acne, excessive hair growth or hair loss Hyperactivity Slowed movements Personality or mood changes

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Rash Prolonged fever Severe sore throat Mouth ulcers Easy bruising Weakness Excessive fatigue Change in appetite Increased seizures Contact Child’s Healthcare Provider Drug Reaction Warning Signs

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In most situations, generic forms of AEDs are appropriate Change in seizures or side effects may occur Switching between formulations is the major concern From brand to generic or generic to brand From one generic manufacturer to another Generic versus Brand Name AEDS

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Considered for people with refractory epilepsy Surgical evaluations: Video EEG monitoring, neuropsychological testing, imaging (i.e., MRI, SPECT, PET), MEG Different types of surgery: focal resection (temporal lobectomy most common) lesionectomy, hemispherectomy, corpus callosotomy Epilepsy Surgery

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Produces ketotic state using diet high in fat, low in carbohydrate, adequate protein Easiest to use in children with control of food choices Effective for all seizure types May require hospitalization to start strict diet Compliance may be problematic Side effects can include constipation, metabolic acidosis, weight changes, kidney stones Ketogenic Diet

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A programmable pulse generator implanted subcutaneously in upper left chest Electrode wrapped around the left vagus nerve Side effects at time of stimulation may include hoarseness, coughing and shortness of breath Settings or ‘dose’ of stimulation is preprogrammed during clinic visits Vagus Nerve Stimulator (VNS)

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The Epilepsy Foundation Eastern PA is a non-profit 501(c)(3) voluntary health agency whose mission is to lead the fight to stop seizures, find a cure and overcome challenges created by epilepsy. We choose to fulfill that mission by meeting the non-medical needs for people affected by epilepsy/seizure disorder to enhance their lives and build supportive communities. The EFEPA provides education, support and advocacy for people with epilepsy and their families across 18 counties in eastern PA. About Us: The EFEPA

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The Epilepsy Foundation Western/Central Pennsylvania (EFWCP) is a private, non-profit service organization providing public education and supportive services to individuals and families affected by epilepsy/seizure disorders. Our mission is to lead the fight to stop seizures, find a cure and overcome challenges created by epilepsy. With offices in Pittsburg, Harrisburg and Johnstown, the EFWCP offers services to residents in 49 counties throughout western and central PA. About Us: EFWCP

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The EFEPA and EFWCP offer additional on-site training programs for School Personnel and Students on First Aid & Seizure Recognition. We also offer assistance in IEP/504 Planning. Check out our website or contact us to set up your school’s next session today! Eastern PA: http://www.efepa.org/programs-and-resources/school-information/ Western/Central PA: http://efwp.org/programs/ProgramsPSA.xml Other Available School Programs

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Contact Information for Programs Sue Livingston Education Coordinator Epilepsy Foundation Eastern PA 919 Walnut Street, Suite 700 Philadelphia PA 19107 www.efepa.org 215-629-5003 Andrea Zonneveld Community Educator & Events Coordinator Epilepsy Foundation Western/Central PA 1501 Reedsdale Street, Suite 3002 Pittsburgh, PA 15233 www.efwp.org 412-322-5880

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Thank you for attending! You will now be prompted to complete a brief post-webinar survey. If you do not have time to complete the survey now one will also be emailed to you. Your input is vital to developing and improving educational programs. This is required for obtaining CE Credits.