Travel Planning for People with Seizures

Print the full article here!

Many people with developmental disabilities have seizures. People with seizure disorders often travel for recreation or work. However, having a seizure when traveling can be more frightening and riskier than having a seizure at home. You can help the people you support to plan a safe trip by:

• Learning about the risks that seizures can bring; and by,
• Suggesting ways that people can stay healthy when away from home.

What are seizures?

A seizure is a sudden increase in electrical activity in the brain that affects how a person acts or feels. Seizures usually last for a short period of time. Seizure activity may include:

• Muscle spasms, from slight twitching to serious convulsions
• Numbness or tingling in part of the body
• Drowsiness or confusion
• Loss of consciousness
• Inability to speak
• Loss of bladder and muscle control

What health risks are caused by seizures?

Seizures are not usually harmful by themselves. However, a person can get hurt during a seizure:

• By falling down or hitting something
• By losing consciousness in a dangerous situation
• By not receiving the right kind of first aid or attention during a seizure

Why are people who have seizures at extra risk while traveling?

There are several ways travel can increase risks for people who have seizures.

Potentially dangerous situations

A traveler may have a seizure while:

• Traveling in a confined space (on a plane or in a bus)
• Traveling alone
• Participating in activities that make seizures especially dangerous (driving or swimming)

More chances of things happening that can cause seizures

Traveling often includes:

• Lack of sleep
• Stress or anxiety
• Changes in diet
• Unfamiliar or increased sensory stimulation (lights or noise)

Not taking medication

A traveler may forget to take anti-seizure medication because of:

• Changes in time zones
• Changes in their daily routine
• Lost luggage or misplaced medication

Finding medical care

A traveler may not be able to find or use the medical care they need like:

• Pharmacies
• Doctors
• Hospitals

How can you help a person who has seizures to plan a safe trip?

A person who has seizures needs to plan carefully before traveling. When helping someone that you support to plan a trip, make sure that they meet with a doctor to talk about things like:

• Should they avoid certain activities?
• What are their safety concerns?

Ask the doctor for a letter that the person can carry saying it is safe for them to travel. Make sure the letter includes:

• The person’s name and contact information
• Their doctor’s name and contact information
• The person’s type of seizure disorder
• A list of medications and dosages
• The location and purpose of a vagal nerve stimulator (if they have one) and how to operate it

Write down a list of questions that will help make sure that the person stays as safe as possible, for example:

• What kind of transportation will they use?
• Where will they stay and when?
• Will they travel with others or by themselves?
• Will hotel or transportation workers know how to respond during a seizure?
• What medical facilities (including pharmacies and doctors) will be accessible? Where are these facilities located?

Help the person answer the list of questions and make a list of what might cause or trigger the person’s seizures. Use these lists to help the person make a plan for avoiding seizure triggers. For example, if a change in diet or blood sugar triggers a person’s seizures, make sure they are all set to carry food and medication while traveling. Also check with airlines and hotels about food choices, availability, and meal times.

You can also give the people you support general tips for managing seizures while traveling. Encourage them to:

• Get plenty of sleep before the trip
• Plan rest periods during each day
• Bring sunglasses, sleeping mask, and ear plugs
• Bring enough medication to last the whole trip plus several days
• Keep medication in its original containers
• Carry half of your medication in a handbag – put the other half in your checked luggage
• Steer clear of drinking alcohol and caffeine (like coffee and sodas)
• Keep up normal daily meal times and sleep schedules

How can someone with a seizure disorder prepare to travel alone?

If possible, people with seizure disorders should travel with someone who knows how to care for their seizures. However, if they plan to travel alone:

• Prepare a schedule that explains when they have to take medication each day. New time zones and different daily routines can cause people to forget to take their medication. Set alarms on a phone or watch (set to the right time zone) to remind them
• Purchase a medical identification bracelet or necklace that identifies the seizure disorder
• Prepare a card or letter for them to carry that lists all medications and includes personal and medical contact information
• Help them create and carry a card or letter that tells other people what to do if they have a seizure. This seizure plan from epilepsy.com is a helpful tool.
• Help them practice what to tell people (airline and hotel staff, bus drivers, fellow travelers) about their seizures

How can people with seizure disorders avoid problems while traveling?

Below are some things that people with seizure disorders may worry about when traveling. There are also some ideas for how to stay as safe as possible.

Changing time zones may get in the way of taking medication and eating at regular times.

• Even if the person you support is traveling with other people, a medication schedule can help someone who is traveling in different time zones. Ask a doctor or nurse when the person should take medication while traveling. Help them prepare a schedule and set reminder alarms on a watch or cell phone.
• Pack snacks and drinks for the person to carry along on their travels. If they are flying, they can buy drinks after they go through security.

Different driving laws for people with seizure disorders.

In California, people with seizure disorders are allowed to drive if their seizures have been controlled for three months and they receive an “okay” from their doctor. However, each state has its own laws and the person you support may break the law if they drive in a state that has laws that are different from the law in California.

If the person you support drives, remind them to:

• Check with their doctor before planning to drive on a long trip
• Contact the Department of Motor Vehicles in the state or country they are visiting to ask whether they can drive if they have seizures
• Carry a doctor’s letter or other papers that say it’s okay to drive
• Carry medication with them
• Take a lot of breaks to avoid getting overly tired
• Limit the hours they plan to drive in one day

Flying can mean spending hours in a tight space without access to medical help.

People with seizure disorders have the right to fly, but airlines may ask for a doctor’s approval. A person should:

• Check with their doctor to make sure it’s safe for them to fly
• Call the airline in advance to tell them about their seizure disorder
• Carry a doctor’s letter describing what their seizures are like and how they should be treated (this letter is not required but may be helpful)
• Request seating close to the front, in a bulkhead, on the aisle or next to an empty seat in order to have extra space
• Carry at least several days worth of medication with them (in case their luggage is lost) in bottles with labels
• Bring food with them and plan to buy water after going through security (in case of flight delays)

People with long, clustered, or uncontrolled seizures may want to travel by bus or train.

• People who wander during seizures should always travel with someone else.
• Remind them to wait away from curbs and away from the edges of train platforms.
• Encourage them to tell bus and train staff about their seizures before traveling.

Some health insurance plans don’t cover medical services while people travel.

Special travel insurance may be available. Before traveling, check with the person’s health plan and ask:

• Will they be paid back for emergency and non-emergency care while traveling?
• Do you need an “okay” from your health plan to get medical care given away for home?
• What forms or information should they carry with them?

What other information is available about traveling with seizures?

These links also provide more information:

• Responding to Seizures
• Making Travel Safer – Epilepsy Foundation
• Adapting Plans for Travel – Epilepsy Foundation