FREQENTLY ASKED QUESTIONS IN EPILEPSY

1. FREQENTLY ASKED QUESTIONS IN EPILEPSY Jeffrey Politsky, MD FRCP(C) Northeast Regional Epilepsy Group

2. FAQs What is a seizure? A seizure is a single event consisting of sudden involuntary movements or changes in behavior which could be caused by different mechanisms, including epilepsy.  Epileptic seizure: a seizure caused by an increase in the level of electrical activity of the brain. It happens in persons with epilepsy. Non-epileptic seizures: Physiologic Seizures not technically epilepsy, but may be very similar to epileptic seizures (e.g. impact seizure, seizures in the setting of low oxygen, metabolic abnormalities, drug/EtoH withdrawal.

3. FAQs Psychological: Psychological non-epileptic spells (PNES) are events that (to some extent) resemble epileptic seizures. Clinical differences between PNES and true epileptic seizures may be subtle or very obvious, depending on the characteristics of the event and the witness. PNES are caused by stress or other psychological conditions.  Some patients may suffer of both, epileptic and PNES seizures.

4. FAQs - Incidence • Incidence of a single seizure? • The likelihood of having a single seizure in a lifetime is about 10%. That means that 10 out of 100 individuals will experience a seizure at some point of their lives. Projected to the United States, 30 million persons will develop a seizure at some point. • Incidence of developing epilepsy (recurrent seizures)? • The likelihood of developing epilepsy is 1%, or about 3 million people in the United States.

5. FAQs – Seizure Stages • What are the stages of a seizure? • Aura• Not all patients have auras; • The initial phase of a seizure that alerts the person that more intense seizure activity may follow.  • Aura usually has same characteristics, lasts a few seconds, and is remembered by the patient.  • Examples:“rising sensation in the stomach”, “strange thought”, ”fear”, particular smell, taste, sound, visual disturbance, an indescribable sensation, etc.  • Auras only occur in patients with partial epilepsy.  • Main seizure• A seizure could manifest in different ways. • From quiet (like staring and staying still) to violent (like a generalized or grand mal seizure. • Clinical manifestations depend on the type of seizure and on which part of the brain is involved. • The seizures could last from seconds to minutes.  • The person could have recollection of it or have absolutely no memory of the event. • Postictal • What happens when the seizure is over.• Recovery phase usally lasts minutes to 1-2 hours, sometimes several hours, and rarely days. • The main characteristics include confusion, sleepiness and headaches. In some occasions, focal paralysis may occur

6. FAQs - Duration Seizures could last from seconds to minutes. • Are usually self-limited and end after several seconds to few minutes without intervention. • In rare occasions, the seizures may not stop by themselves. • If the seizures continue and become very prolonged, they could become very risky. This situation is called status epilepticus.If you witness the seizure make sure to start timing it as soon as you can so you can tell the doctor or the emergency medical personnel this important piece of information.

7. FAQs - Triggers • What can trigger seizures? • Anyone with a brain can have a seizure.  • There are many factors that could contribute to the level of brain irritability required to produce a seizure: • Sleep deprivation, • Stimulation with strobe lights, • Stress, • Some drugs and toxins • Metabolic Disturbances and Various Illnesses

8. FAQs – Seizure Frequency Seizures can occur in different frequencies: • Single seizure: some patients will have just a single seizure (not necessarily epilepsy (usually need to have more than one).  • Recurrent seizures (ie epilepsy): requires treatment and avoidance/prevention of precipitating factors.• Clusters of seizures: Seizures can occur individually or in clusters.

9. FAQs – Seizure Types Partial (Focal) Seizures Simple (awareness intact) “Aura” Complex (awareness lost) Generalized Seizures Primary Symptomatic (Secondary) Secondarily (Propagated) Mycolonic Reflex

10. FAQs – Partial Seiuzre Types Auras Motor Sensory Visual Olfactory Auditory Gustatory Experiential Autonomic Partial Seizures Simple Complex Gelastic Hemiclonic Reflex

11. FAQs – Partial Seizure Types Partial (Focal) Seizures Sensory Elemental Experiential Motor Elementary clonic Asymmetric tonic Typical TL automatisms Hyperkinetic automatisms Negative myoclonic Inhibitory motor

12. FAQs – Partial Seizure Types - Automatisms Automatisms Temporal Lobe Oro-alimentary Gestural Vocalization (w non-dom hem) Frontal Lobe Prominent bilateral motor automatisms involving lower limbs Prominent ictal posturing & tonic spasms Bizarre, sometimes violent automatisms

13. FAQs – Reflex Epilepsy Triggers Visual stimuli Flickering light (color to be specified when possible) Patterns Other visual stimuli Thinking Music Eating Praxis Somatosensory Proprioceptive Reading Hot water Startle

14. FAQs – Generalized Epilepsy • Generalized epilepsy:  • Composed by generalized seizures (i.e. absence, myoclonic or/and generalized tonic-clonic seizures) • There could be one or more types of generalized seizures (but not partial seizures)

15. FAQs – When to call the Doctor • When you have a question • When you have a prolonged or stronger seizure than usual • When you develop a new symptom that could be related to a medication you are taking • When you have a symptom that could be a new type of event or seizure • When you are prescribed medications by other doctors to make sure they do not decrease the seizure threshold and do not interact with the seizure medication

16. FAQs – Seizure-Related Injuries • Seizures which occur while an individual is engaged in activity requiring full awareness could potentially pose a risk of serious injury.  • Examples include climbing on ladders, operating power tools, swimming, and driving.  • A Person with epilepsy should discuss any restrictions on activities with their medical provider.  • Driving regulations vary by state and also need to be to be discussed with a qualified medical provider

17. DRIVING RESTRICTIONS BY STATE (Minimum) • NONE – CO, CT, DE*, ID, IL, IN, LA, MT, NE, NM, OH, VT, WY • 3 MONTHS – AZ, CA*, KY, ME, MD, MN, NV*, OR*, TX, UT, WI • 6 MONTHS – AL, AK, CA*, FL, GA, HI, IA, KS, MA, MI, MS, MO, NJ*, NC, OK, PA*, SC, SD, TN, VI, WA, WV • 12 MONTHS – AR, DC, NH, NY, ND • 18 MONTHS - RI • 24 MONTHS – ME • “CDS” - **FMCSA** - 5 yrs (1 event); 10 yrs (2 events); Not if on AEDs

18. FAQs – Status Epilepticus (SE) • Any seizure lasting longer than 5 minutes without interruption – almost always a medical emergency • Requires pharmacologic intervention. • 50,000 persons die of SE in the United States per year • The most common forms of SE are: • Partial Status Epilepticus • Generalized Convulsive Status Epilepticus (GCSE) • Nonconvulsive Status Epilepticus (NCSE) • Myoclonic Status Epilepticus: • The prognosis of status epilepticus is directly related to two factors – CAUSE & DURATION • Common causes for status epilepticus include: • Non-adherence: Persons with epilepsy who voluntarily or accidently stopped taking their seizure medication • Alcohol withdrawal • Brain infections like meningitis and encephalitis • Stroke • Traumatic Brain Injury • Tumor

19. FAQs - SUDEP • The individual is in good health other than the epilepsy, no other obvious cause (including autopsy findings); • Patients with epilepsy have a higher risk of premature death than the general public.  • SUDEP may be a contributing factor to this higher risk • 10% of patients with epilepsy are estimated to die from SUDEP • SUDEP usually occurs in persons with severe epilepsy. • Greatest Risk: • 25 – 50 years Old • History of epilepsy greater than 2 years • Poor seizure control • Generalized Tonic-Clonic Seizures • Profound intellectual disabilities • Taking more than 2 seizure medications • Low seizure medication level • Cause of SUDEP • Currently unknown • Airway obstruction during or after a seizure (choking) • Apnea (breathing stops) • Pulmonary edema (lungs fill with fluid without clear explanation) • Cardiac arrhythmias (irregular heartbeats) • Genetic causes

20. FAQs - SUDEP Prevention of SUDEP • Adherence with medical therapy • Take prescribed seizure medications • Go for blood work as instructed to monitor medication levels • Attend follow-up appointments • Fill prescriptions regularly and avoid running out of medications • Consider a second opinion at an Epilepsy Center if seizures are frequent and uncontrolled despite good adherence with therapy • Individuals with frequent nocturnal seizures may consider • An alert system or monitor by the bedside • Not sleeping alone if possible • Switching from a soft feather pillow to a firm foam pillow to prevent suffocation

21. FAQs – Seizure First Aid • First Aid • Discuss a seizure preparedness plan with your treating medical provider.  This should include the following elements• When to call emergency services (911) or go to the emergency room  - Usually for prolonged seizures (especially generalized tonic clonic seizures), seizures associated with breathing difficulties, or any seizures that have caused serious injury  - Brief seizures that have ended spontaneously without injury may require a call to the treating medical provider but not 911• Use of rescue seizure medication in case of seizure clusters • Oral medications - Lorazepam or Diazepam • Rectal medications – Diastat • VNS - swipe the magnet once • For child with epilepsy in school, the seizure preparedness plan should be discussed in advance with the school nurse or other appropriate school official • General precautions if you witness a seizure • Keep calm • Move the person away from danger if possible but with great care • Loosen restrictive clothing • Call for help and/or 911 if indicated • Try to remember and describe everything you saw during the seizure • Never put anything in someone’s mouth during a seizure • After a seizure, it is important to get rest, regular meals, and take seizure medications on schedule • Wounds • Tongue/Cheek Bites – oral cleanser • Other injuries – depends on nature (soft tissue/bruising, lacerations, burns, fractures, dislocations)

22. FAQs – Seizure Precautions • Get regular rest, sleep, nutrition, exercise and avoid excessive stress • Take seizure medications as directed • Make and keep regular follow-up visits with your medical providers • Refill Meds on time and avoid running out of a medication supply • Try to keep extra pills in key places • Avoid excessive alcohol or illicit substances • Discuss restrictions with your medical provider • Driving • Other motorized vehicle and dangerous machinery • Bathing • Swimming • Climbing • Pillow Selection • Other medical issues

23. FAQs – Seizure Precautions • At present there are no FDA-approved devices to detect seizures at home • Some families with children with epilepsy with nocturnal seizures during sleep use a baby monitor • Keep your seizure medication in a convenient place where you will remember to take them, but away from children • Set an alarm or develop another system to remind yourself to take your medication • Carpet floors and pad sharp corners • Don’t smoke • Don’t light a fire when you are home alone • Make sure drain is working in bath and shower • Don’t take a bath in deep water • Don’t lock the bathroom door • Tell friends/family where you are going • Caution on trains, escalators • Keep emergency numbers with you • Medical Alert Bracelet, Card or something to tell people you have epilepsy • Visit http://www.epilepsyfoundation.org/living/wellness/safety/safetyhouses.cfm for more useful tips

24. FAQs – Traveling with Epilepsy • Discuss a plan with your medical provider in advance • If you have frequent seizures, or if you become confused during seizures, avoid travelling alone • Give friends and family a travel itinerary • Look into hospitals where you are going in case of an emergency • Take an adequate supply of seizure medication with you • If the trip will be very long in length consider finding a medical provider in the area to provide refills • Some countries may not have seizure medications prescribed in the United States.  Look into this in advance • Longer flights and jet lag can cause disrupted sleep which may cause a seizure • Discuss with your medical provider if you need a sleep aid for the trip • Avoid excessive alcohol and get regular meals • When travelling to a foreign country, consider learning basic phrases to request medical assistance, such as “I need help” or “where is the hospital”, or travel with someone who knows the language • Come up with a plan for emergency travel home • Discuss this plan with someone you trust before you go

25. FAQs – Epilepsy Advocate • Experience in helping individuals and families cope with the effects of epilepsy on their lives.  • Epilepsy Foundation Affiliates and in only a handful of Neurologic medical practices. • Epilepsy education in the form of seizure recognition and first aid trainings to schools and school bus drivers, police and fire departments, camps, agencies that support individuals with epilepsy, and places of employment • Epilepsy education in the form of patient/community conferences • Educational intervention in the form of counseling parents on education law and attending Individualized Education Program and 504 meetings • Service coordination/case management that provides access to local and state provided services and benefits • instructs patients in applying for patient assistance programs, locates camp and college scholarships, and refers to appropriate agencies for additional services • Vocational programs • career goal objectives, resume preparation, interview skills training, job search assistance, on-the-job supports and conflict resolution including Americans with Disabilities Act information and reasonable accommodation assistance • Driving law clarification • Support groups • Social programs.