Traveling has never been easy, and people with epilepsy have always had to think twice about safety and managing medications while traveling. Since September 11, 2001, taking a trip has become even more difficult for people with epilepsy and their family members.
There are several reasons for this. Increased security is producing closer scrutiny of medications carried on flights, more questions regarding implanted vagus nerve stimulators and magnets, and increased concerns about the possibility of having a seizure during a flight.
As a nurse, I have been getting many requests from people with epilepsy for help on these issues and many more. During this holiday season, it is wise for everyone to consider travel plans in advance. Plan time to talk with your doctor or nurse to make your traveling and holidays easier and safer.
Traveling on Airplanes
Can people with epilepsy travel by airplane? In my opinion, people with epilepsy should be able to travel by all means of transportation. Still, the type and frequency of seizures should be considered when making travel plans. People who have frequent seizures or seizures with loss of consciousness or confusion, or if they experience changes in behavior following a seizure, might want to think about traveling with a companion, particularly on an airplane. The companion should know what to do in case the person has a seizure, and how to explain what's happening to others on the plane who may be concerned.
If there is any question about whether a person should fly or needs a companion, he or she should talk with the doctor, particularly if that person is prone to long seizures or clusters of seizures, going through medication changes or having a significant change in their seizure control. Maybe other forms of travel would be preferable, at least until the seizures improve.
Most people, however, can travel safely by air. It may be helpful to carry a doctor's letter stating that they can travel safely by plane and what the flight crew response should be if a seizure occurs.
Traveling with Meds
What is the best way to carry medications and how much should you take? I think people should always travel with two sets of medications - one packed in their checked bags, and the other taken on the plane with them. This way, if one set is lost, the person will not be left without any medication.
It is always smart to carry at least a day's supply with you, in case you get delayed in an airport. Security personnel are understandably concerned about unlabeled liquids or products. Thus, it's advisable to store and carry medicines in properly labeled bottles.
Ask your pharmacist to label empty bottles with your current prescriptions. You can then use these to carry the necessary amount with you instead of taking all your medicine along. If you carry a pillbox, make sure that it is properly labeled as well.
If you are planning a long trip, make sure you talk to your doctor about any changes in your medicine schedule that may be needed. Luckily, there are new medications and longer acting forms of older medicines that can be taken twice a day. This makes traveling across time zones much easier, and reduces the chances of missing a dose.
Traveling with the VNS
The VNS (vagus nerve stimulation) device consists of a small, flat battery or generator, implanted in the chest wall, designed to prevent seizures by sending regular pulses of electrical energy to the brain via electrodes connected to the vagus nerve in the neck.
Are special considerations needed for travelers who have a vagus nerve stimulator? In light of increased security, people with an implanted VNS have shared some interesting stories with me. During routine searches at airports, some people have been questioned about the bulge under the skin where the generator is placed. Others have found that the increased sensitivity of screening devices have been activated by their VNS.
To avoid being unnecessarily delayed or questioned, I advise people to carry their VNS registration card with them, as well as the patient manual that describes the device. People with a VNS should also ask their doctor or nurse to include information about the device in a letter that they can take with them when they travel. The letter should state that they are okay to travel and explain the use of the magnet (which may be used to start or stop the stimulation).
Traveling with a Plan
Why are all these precautions needed? Airline and security personnel will be concerned when someone's behavior is out of the ordinary. It sets off alarm bells. They think something is wrong.
They may not recognize certain behaviors as being cause by a seizure. They may just think that a person who is confused during a seizure will become agitated or attack someone. Or in a mistaken attempt to help or detain, they may try to restrain that person. Unfortunately, this reaction will often make someone in the midst of a seizure more confused, agitated or even combative. No one wants this to happen. That's why now, more than ever, we need to educate others about what seizures are, what they are not, how to help, and what not to do.
Education and planning begins at home - by making sure that everyone with epilepsy knows what to do and what to tell others. Begin by going over the following checklist - talk about it with your doctor or nurse so you can be ready when you want to travel.
Have an enjoyable and safe journey!
•Wear a Medic Alert bracelet or necklace
•Think about the type and number of seizures you usually have. Is it advisable to travel by air? Does traveling with a companion make sense?
•Know seizure first aid and make sure your companions do too
•Take two supplies of medicine in properly labeled bottles
•Talk to your doctor or nurse about how to take your medicines. Will you need to change the times if you are traveling across time zones?
•If you have a VNS, carry the registration card and patient manual given to you by your doctor.
•Ask your doctor or nurse for a letter stating that it is safe for you to travel and include:
•Type of seizures and what they look like
•What to do if you have a seizure
•List of medicines and doses that you take
•If you have a vagus stimulator in place, explain it briefly, say where it is (left chest), what it does, and that you carry a magnet that is part of the therapy
•Doctor's name and contact information
Editor's note: when this advisory was originally published in 2002, the writer was the chair of the Epilepsy Foundation's Professional Advisory Board.