International Travel with Epilepsy by Jeanette B. Herting Editor’s Notes by Robert S. Fisher, M.D., Ph.D., Editor-in-Chief of epilepsy.com In today’s global economy, everyone, including people with epilepsy, must be able to take advantage of international travel opportunities for both business and leisure. Many concerns about the plausibility and/or safety of international travel for people with epilepsy are based on incomplete or outdated information, or on guidance from those not welltraveled internationally themselves. These issues can often be resolved successfully with careful planning. This article addresses strategies to deal with common international travel concerns, including immunizations, overseas flights, jet lag, accommodations, transportation, language barriers, and the availability of appropriate medical professionals and facilities. It includes brief profiles of three cities particularly well suited to international travelers with epilepsy and a summary of best practices for traveling abroad safely and confidently. Getting Started Whether to travel Perhaps you want to attend an international business conference, travel overseas for a wedding, see the Olympic Games, or enroll in a study abroad program. You may have a lifelong dream of researching your family history or relaxing on an exotic beach. Consider carefully, plan meticulously, and then go. There is no reason why many people with epilepsy cannot participate fully in life’s professional and personal opportunities, including international travel. There are obvious exceptions. Do not travel abroad against your doctor’s specific advice. Do not attempt an international trip if you are starting anti-seizure medications for the first time, or during a change in medications. If you are recovering from recent surgery, overseas travel is never advisable. If you are medically unstable at home, you are likely to be even more unstable abroad, in an unfamiliar place and off your routine. However, if 4 Epilepsy: Insights & Strategies March 2009 you are medically stable and have made the proper preparations, the possibility that you might have a seizure is, by itself, no reason to stay home. People with serious health conditions, and who take daily medications to manage them, travel internationally every day without incident. You can be one of them. Choosing a destination Business travelers often do not have the luxury of choosing their destinations, but leisure travelers can use the following guidelines: Prior travel experience If this is your first international trip, your inexperience as a traveler will likely be a bigger challenge than your epilepsy. This is particularly true if you come from a rural community. Many popular international destinations are very large metropolitan cities. If possible, take a weekend practice trip in a major city closer to home. If you have traveled abroad before and are ready to venture further afield, read on. Assessing access to medical care In all of Western Europe and much of Eastern Europe, epilepsy is well understood and some of the same medications are prescribed, at dramatically lower prices. Germany, France, Spain, Italy, the United Kingdom, and Scandinavia are all good choices. Travelers with epilepsy should also not hesitate to visit some of the countries new to the European Union, such as Poland, Slovenia, and Hungary. On the Pacific Rim, Japan, Korea, Hong Kong, Singapore, and Australia have ample epilepsy resources for travelers. Capital cities with significant expatriate populations throughout Africa, South Asia, the Middle East, and Latin America have some degree of Western-style medical care. Expatriates.com is a good forum in which to pose specific questions. While the developing world has much to offer international travelers, access to neurological care International Travel with Epilepsy Herting can be challenging and transportation to major cities lengthy and unreliable. Investigate your destination on the Web thoroughly before committing. Conflict and disaster zones are poor travel choices for people with epilepsy. Physicians are scarce, prescription drugs are rationed, and medical resources are devoted to people who are ill or wounded. Climate Some people with epilepsy experience discomfort in climates different from home. To address this, find your own latitude on a world map and then identify international destinations similarly equidistant from the equator, either north or south. For example, those of you from Chicago will find Beijing’s cold, windy winters and hot, humid summers quite familiar. Readers from San Diego will find a southernhemisphere equivalent in Sydney, Australia. Thailand will feel comfortable to residents of Florida and New Englanders will appreciate Northern Germany and Denmark. Photosensitivity Major cities in Asia, such as Taipei and Bangkok, are abounding in neon signs and flashing lights that can be unnerving even to travelers without epilepsy. If you have photosensitive seizures, this is not a reason to avoid these locales completely, but rather to be prepared and manage your exposure. Preparing for Your Trip Medical expertise/facilities Physicians and epilepsy centers Epileptologists and epilepsy centers can be found the world over, from Sweden to South Africa. Your best resource is your own neurologist’s professional network. Many foreign-born physicians practice in the United States and can refer you to colleagues in their home regions. Another good resource is a local chapter of the International League Against Epilepsy. You can also search the Web for “epilepsy center” and your destination. Prescriptions Remember to bring all of your medications in their original labeled bottles and photocopies of each prescription. Carry enough medicine with you for your entire trip, plus a one-week buffer, in case your return is delayed. Ask your physician or pharmacist whether your medicines might be available overseas, as an option. Editor’s Note: To see whether your medication is available in your destination country, you can look it up in the International AED database list at: http://www.ilae.org/visitors/centre/aeds/epilepsy. Alternatively, on the epilepsy.com website, in the left column, click “Treatment - Seizure Medicines - International AED Name Database.” If you lose or forget a prescription, there’s a good chance that you can have it refilled at a local pharmacy. Medicines not in stock can generally be ordered within a few days. If your request is urgent, a hospital pharmacy may be able to assist you more quickly. Most pharmacists abroad are educated in English and speak the language proficiently. In some places, such as France and Wales, pharmacists have diagnostic as well as prescriptive authority. In many communities, they fulfill the role of a family physician or a walk-in clinic. Pharmacists can be excellent sources of local physician referrals too. Travel Immunizations Travel to some destinations, and re-entry to the United States from others, requires immunizations. Some immunizations are optional and/or solely for your protection; others are mandated, such as Yellow Fever vaccination for travel in infected areas of Africa and Latin America. For detailed information, query your destination at the Centers for Disease Control and Prevention website. Make a consultation appointment with an international travel clinic approximately two months prior to your departure date. The travel medicine clinician will take a full medical history, including your prescriptions, and make immunization recommendations, balancing your likelihood of exposure with any side effects you might experience and any conflicts with your anti-seizure medications. Certain immunizations are not given to women who are pregnant, or who intend to become pregnant within several months of travel. March 2009 Epilepsy: Insights & Strategies 5 Herting International Travel with Epilepsy Some travel immunizations are single lifetime boosters of immunizations you have had in the past, such as Polio. Other immunizations are good for two, five, or ten years. Hepatitis A&B is given in sequential doses; you receive the full immunity only after you have taken the final dose. Malaria prophylaxes are taken a certain number of days prior to travel, throughout your trip, and a certain number of days after you return home. Weakened live viruses, such as the oral Typhoid Fever vaccine, may make you feel slightly ill for a few days. Editor’s Note: If you are treating or preventing an infection, be aware that certain antibiotics can provoke seizures in susceptible individuals. If you have seizures, doctors advise particular caution with the antibiotics metrinidazole (Flagyl), ciprofoxacin (Cipro), levofloxacin (Levoquine), intravenous imipenem/cilastatin (Primaxin) and very high intravenous doses of penicillins or cephalosporins. Malaria prevention with mefloquine (Larium) has precipitated seizures in some people. Medical alert jewelry You will not be inconveniencing others if, despite your best efforts, you have a seizure in a foreign country. However, you will be inconveniencing others if you make it difficult for them to help you by making them guess what is wrong with you. When you travel internationally, always wear medical alert jewelry (bracelet, necklace, or watch). A physician treating you in a foreign country needs immediate access to your complete medical records and to all of your contact information. He or she may want to speak directly to your neurologist, through an interpreter if necessary. Thus, wearing jewelry labeled simply “epilepsy,” or with a telephone number for “Mom,” is insufficient overseas. Subscribe to an international medical alert registry, such as the non-profit MedicAlert.org. MedicAlert is a known brand worldwide and provides up to five physician and family contacts, an updatable Webbased medical history, twenty-four-hour support, and translation services in over 140 languages, all for less than forty dollars per year. You can request, at no additional charge, that your jewelry be engraved with a direct-dial telephone number, in addition to the default 1-800 number, which can be called collect from any country in the world. Accommodations The hospitality industry makes a profit by keeping its customers as comfortable and happy as possible. However, the hotel employee processing your room request knows only as much as you disclose. If you make very specific requests to a hotel in advance, it will make every effort to assist you. Here is some sample text to include in every hotel reservation request: “Please put me in a quiet room well away from &#lt;whatever bothers you&#gt;. I have a seizure disorder. Thank you very much for your assistance.” Modify this text as your medical needs dictate. If you are photosensitive, ask for a room facing away from the street, with blackout curtains in the room. If your seizures might be triggered by vibrations, ask for a room away from generators, boilers, laundry machines, and other mechanical devices that run continuously. Rooms with mobility assistance bars in the bathroom are less common at international hotels, but not unheard of. If you need them, ask what is possible. Carry your International Certificate of Vaccination with you. You may be required to present it at border crossings, or to obtain visas. Leave a photocopy of it, along with photocopies of your passport and airline tickets, at home for safekeeping. Travel insurance First, verify that your current United States health insurance policy covers you abroad. Understand your policy limitations internationally and find out the pre-approval process for any emergency procedures. Next, investigate supplemental international travel medical insurance coverage from a specialist broker such as IMG Global. Two key benefits of such policies are trip interruption and medical evacuation coverage. Pre-existing condition clauses may apply. Carry your insurance card(s) with you and be sure you have a direct-dial (not 1-800) contact telephone number for each insurance carrier. If you receive medical treatment abroad, you may have to pay some, if not all, of the fees up front and submit a claim when you return home. The paperwork you receive from the international hospital or clinic must include at least the following to be reimbursable: physician name, facility name and address, date of treatment, diagnosis, breakdown of charges (pharmaceuticals must be listed separately), and receipt of your cash payment. 6 Epilepsy: Insights & Strategies March 2009 International Travel with Epilepsy Herting Getting There In flight An airplane is one of the safer public places in which to have a seizure because there are professionals with seizure training already there. Flight attendants are retrained every six months to one year to handle medical emergencies in flight. They can communicate with medical professionals on the ground and call on any physicians on board to assist you. The airline employee who greets you at the door of the plane is either the flight purser or a lead flight attendant in your cabin of service. When showing the pursuer your boarding pass, simply say, “Hello. I’m in seat . I have epilepsy. I don’t expect to have any problems on this flight, but please watch out for me just in case.” Editor’s Note: I agree with telling flight attendants about epilepsy, but be aware that airlines on rare occasions have declined to transport people with a history of epilepsy. It is not right, and it may not be legal, but it has happened. mention legal, consequences. Flight personnel may assume that you are either a disruptive customer or under the influence of drugs or alcohol and can request a landing met by law enforcement. If flight attendants are informed about your epilepsy, they can request a medical evaluation in flight and an ambulance awaiting your aircraft, if necessary. Jet lag Jet lag is your body’s response to lengthy air travel and changing time zones. Since you take medicines on a strict daily timetable, ask your neurologist how you should modify your regimen. Editor’s Note: When taking pills in a different time zone, one strategy is to try to stay as close to the original time schedule as is possible to avoid periods of medication withdrawal. Where this is not practical, such as in the middle of the night, slide the pill schedule over by a couple of hours each day in the direction of convenience. Remember to reverse the process upon coming home. Display your medical alert jewelry, so he or she knows where to look for it. Even on a full and busy flight, be assured that the cabin crew will monitor your whereabouts and will look for you if you disappear from your seat or remain in the restroom for an unusually long time. Reserve an aisle seat so you can easily get out of your row, or lie down in the aisle if necessary. If you have a seizure in the airplane restroom, press the emergency call button–its international icon is an outstretched hand–located over the sink. Or, pound hard on the door with your fist. The restroom door can be opened easily from the outside. If you are traveling alone and begin to feel symptoms of a seizure, tell someone seated near you. If you are traveling with others, instruct your companion(s) what to do if you begin to look or act differently in flight. In our post-September 11th world, there is zero tolerance for inappropriate airplane behavior, even if not deliberate. Take care not to be mistaken for a troublemaker. Delay in alerting the right experts to your emergency could have serious health, not to Should you wake up in the new city on the new clock and take medicines accordingly, or should you slowly transition over several days? Determine also how to reverse the process when you return home. Sleeping pills and over-the-counter jet lag aids such as melatonin can be counterproductive, exacerbating in turn both sleepiness and insomnia. A more effective solution is to leave on the trip well rested, stay hydrated throughout the flight with water and fruit juice but never alcohol, eat lightly the freshest available food (pre-order a vegetarian meal), and convert to the new time zone immediately upon arrival. Help yourself by timing your flight to arrive in the afternoon or evening local time. Jet lag tends to be the worst, not on your arrival day, but three to four days into your trip. Be prepared for this. If you are taking an organized tour, you may have many back-to-back late nights out and early morning departures. Pace yourself. March 2009 Epilepsy: Insights & Strategies 7 Herting International Travel with Epilepsy At Your International Destination Transportation Public Public transportation is the norm almost everywhere in the world except the United States. Your choices include taxis, metros (underground or elevated), buses, trams, ferries, trains, or even regional budget airlines. These are reliable, inexpensive, and your best option while traveling abroad with epilepsy. If you ride cable cars or trams, sit on a bench in the interior of the car, rather than standing along the outside holding onto a railing. Do not take motorcycle taxis and other open-sided forms of transportation from which you might fall out. On ferries, put on a life jacket, even if other passengers do not. Elevators are not always available internationally; in city transit stations, you will climb hundreds of stairs. If you are unsteady on your feet, avoid stations during the morning and evening rush hours and always hold onto a handrail. Follow the “stand to the right, walk to the left” rule, even in countries in which cars are driven on the left. When you ride steep escalators, don’t carry packages and steady yourself with both hands. Private Even if you hold a valid United States driver’s license, note that in some countries, people with epilepsy are not allowed to drive at all, ever. Others require a waiting period of six months to three years since a seizure has occurred, which may be different from the regulations in your home state. Contact the embassy or consulate of the country in question for their latest regulations and carry copies of those documents together with your driver’s license and international insurance information. Ponder carefully the decision to rent a car in an unfamiliar international destination. Many countries drive on the left-hand side of the road, have different driving laws and traditions, and have only locallanguage signage. Purchase the maximum amount of insurance available. Drive at night with extreme caution. If you are not licensed to drive in the United States, or have been advised by a physician that you should not drive, do not drive overseas under any circumstances. Note that the legal penalties for causing harm while driving impaired can be more severe in other countries. If you have an accident, the American Embassy can help you obtain legal counsel, but they cannot make these penalties go away. Consider hiring a car and a driver by the day. This option provides you with transportation, local tour guiding, and some personal security all in one. Contact your hotel in advance for options. Eating and drinking There is no more enjoyable way to experience a foreign destination than through its cuisine. Unless your doctor has advised you otherwise, sample the local delicacies in moderation. Water from the tap is safe to drink throughout Western Europe, although many people prefer bottled water for taste. Elsewhere, either buy sealed bottled water or filter/purify your own in less than one minute using SteriPEN. If the water is suspect, take care eating salads and peeled fruit in restaurants because produce is typically washed with tap water. If you take medicines with food, bring a supply of granola bars, nuts, and dried fruit in their original sealed packaging, in case your schedule does not coincide with local mealtimes. Decaffeinated drinks are not available everywhere; pack decaffeinated single-serving coffee and tea packets. In the Far East and Russia, business travelers are often entertained nightly after work and are expected to drink alcohol, in larger amounts than is customary in America, to avoid offending the hosts. Set the expectation early, either that you do not drink alcohol at all for health reasons, or that you will take only one drink with your meal. Language barriers People who work in the international tourism industry–hotel and restaurant employees, retail salespeople, tour guides, travel agents, and transportation workers–are more often than not multilingual. However, proficiency in English varies from country to country. 8 Epilepsy: Insights & Strategies March 2009 International Travel with Epilepsy Herting Many people who do not speak a foreign language well often still have good understanding. Speak slowly (not loudly), enunciate, avoid slang, and when necessary write simple sentences to make yourself understood. Keep a small notebook and pen handy. Carry a phrase book from Lonely Planet and mark relevant health-related words and phrases. If you can say nothing else in the local language, be sure you know the words for epilepsy, seizure, and help (in addition to hello, goodbye, please, and thank you). At check-in, mention that you have epilepsy and confirm the location of the hospital and pharmacy nearest to the hotel. Ask the front desk manager to write this information in the local language on the back of a hotel business card. If you experience a seizure away from the hotel, you can give the card to a taxi driver. Crime Although any traveler can be the victim of petty crime in a foreign country, people with epilepsy are at a somewhat greater risk. Prevent theft of your valuables by keeping them in a place that remains out of sight even if you have a seizure in public. The most comfortable and least conspicuous solution is a waist pouch–worn underneath your clothes and backwards, in the small of your back–containing anything that, if lost, could seriously delay or ruin your trip. This includes your passport, airline ticket, credit card, emergency cash, immunization record, insurance and MedicAlert cards, itinerary and contact list. At your destination, safeguard your valuables in your room safe, if available, and carry in your handbag, briefcase, or pocket only the items you will need to use during the day. RickSteves.com is a comprehensive resource for independent travelers, especially in Europe; the website can help you to prepare and to take precautions for your specific destination. Misunderstandings Misconceptions about epilepsy, and discrimination against those who have it, still exist around the world. In East African countries, many people still believe that epilepsy is an infectious disease caused by witchcraft and treated with herbal remedies and/ or rites of exorcism. In parts of Latin America, the term epilepsy refers to seizures in people with mental disabilities. (Non-disabled people with seizures have brain arrhythmia.) In India, people with epilepsy are, to this day, not expected to marry or to have children. Not everyone you meet will hold these viewpoints, but some may. Education is the most powerful tool to correct misconceptions about epilepsy worldwide. If you are treated unfairly because of your epilepsy, consider this: while many countries are weaker in disability legislation than is the United States, they are stronger in traditions of visitor happiness. To make guests feel unwelcome, or to give them a poor impression of the country and its people, is unthinkable. Use these societal mandates subtly to your advantage. Even in countries where epilepsy is well understood, the treatment approach may be different. In China, Western pharmaceuticals and highly effective traditional methods are commonly prescribed to the patient together. Three Epilepsy-Friendly International Destinations You May Never Have Considered Bologna, Italy A university town with one of the oldest medical schools in Europe, Bologna is a perfectly located hub on Italy’s rail system, a mere one hour from Florence and two hours and thirty minutes from Rome. The Emilia-Romagna region is famous for its fabulous cuisine, temperate climate, and pastoral views. The quiet country roads around Modena are safe for people with epilepsy to ride bicycles (wearing helmets). Kyoto, Japan Although the language barrier intimidates many potential travelers, Japan is a recommended destination for people with epilepsy because of its hospitality, safety, and high-quality medical care. Kyoto is home to the Kansai Regional Epilepsy Center as well as to the Kyoto Imperial Palace–particularly beautiful in springtime during hanami, the annual cherry blossom viewing festival. Istanbul, Turkey Istanbul, the gateway between Europe and the Middle East, has luxurious hotels, exotic markets, and thousands of years of history to explore. While people March 2009 Epilepsy: Insights & Strategies 9 Herting International Travel with Epilepsy with epilepsy should avoid car rentals and dolmuş (shared taxis), there are abundant transportation options. English is widely spoken. The Istanbul Faculty of Medicine at Istanbul University has published studies on epilepsy therapies. Best Practices for International Travel with Epilepsy • Consider carefully when and where to travel, given your medical stability, international travel experience, and availability of care. • Make substantial advance preparations for your trip regarding local medical services, travel immunizations, insurance coverage, and appropriate accommodations. • Wear medical alert jewelry and tell people who can help you, including fellow travelers, flight attendants, hotel staff, and tour guides, about your epilepsy. • Be aware of jet lag and have a plan to manage it, with your daily medicine regimen, on your destination time zone. • Make safety a priority during your journey by not driving unless it’s legal to do so, limiting your alcohol intake, and protecting your valuables. • Realize that honest mistakes can occur anywhere in the world and use those opportunities to educate, graciously, those who hold erroneous beliefs about epilepsy. • Believe that the global community–and economy–is open to everyone and document your international travel experiences to encourage fellow travelers with epilepsy. The author in Ghanaian attire, Volta Region, Ghana, West Africa Jeanette B. Herting is a Microsoft alumnus, Le Cordon Bleu Pariseducated chef, international relief and development volunteer, and green business advocate. She has traveled on six continents. Keep more issues of Epilepsy: Insights & Strategies coming. Show your support for this great resource. Donate to the Epilepsy Therapy Project now. Just go to epilepsy.com/etp/donation_form. Make your donation today. 10 Epilepsy: Insights & Strategies March 2009