Safety in epilepsy and seizures: Being a tourist when you have epilepsy (how to make sure to enjoy your trip to the fullest by traveling safely
It is not uncommon for people with epilepsy (PWEs) to have concerns when taking a flight; they especially might worry about the possibility of having a seizure during the trip; the invisibility of epilepsy which could make it harder to request accommodations; and about how to manage their anxiety. When facing the unknown, it can be helpful to educate yourself as much as possible (e.g., tips, your rights, and reminders). Let’s start with some key factors to keep in mind: the potential disruption to sleep that comes with travel and time changes, the possibility that you may be nervous and which could lead to hyperventilation, and the possibility of dehydration or skipped meals. Read on about some useful recommendations for flying as a tourist with epilepsy:
a) Although it might make very good sense to travel with a companion (especially if your seizures are frequent, difficult to manage, or might occur with alterations to your consciousness), you should know that you cannot be forced to travel with someone just because you have epilepsy.
b) Furthermore, you don't have to disclose that you have epilepsy/seizures. Although you may decide to inform a flight attendant or other passenger who could use this information to assist you better.
a. It may also be a good idea to wear some kind of medical bracelet, pendant, or machine-readable bar code (e.g., https://www.cnbc.com/2016/09/02/store-your-entire-medical-history-on-your-wrist.html) that goes on your wristband. Important information about your medical condition that would be used by medical personnel treating you during an emergency should be on it.
b. Prepare for changing time zones and loss of sleep. Carve out some rest time in your destination and speak with your doctor about possible sleep aids that might help maintain your usual sleep patterns. Of course, even the best laid plans are sometimes unexpectedly messed up, such as might happen with a flight delay or a long night seated behind a crying baby, etc. If this happens, don’t despair, but be prepared to be flexible with your schedule and maybe take it slow at the beginning of the trip.
c. It might be a really good idea to not only have your medical alert bracelet or necklace, but to also carry a letter from your doctor. The letter should describe your typical seizures and have a clear Seizure Action Plan for others to know how to respond properly to a seizure. You may choose to share this with a flight attendant or just make sure it is handy in one of your pockets.
d. Depending on the characteristics of your seizures, it might make sense to contact the airline in advance – request a wheelchair to get through security and onto the plane, request special seating arrangements (perhaps the aisle is best or more towards the front of the plane), and if the flight is not too full, perhaps request a seat next to an empty one in case you need to lie down a bit. Also, request to be moved to another row if you happen to be in the emergency exit row.
e. It is very important to pack all your medications in your carry-on bag (never put these in a checked suitcase as the bag might get lost and with it all your medications!). If you have rescue medication, it should be mentioned in your Seizure Response Plan and should be easily accessible in your carry-on or purse and recognizable.
f. Last but not least, if you are prescribed medicinal marijuana to treat your seizures, be sure that the state you are flying to (or the country) allows you to transport and use it (without any legal repercussions).
These are a few tips and suggestions to make sure that when you travel by plane, you feel safer and more knowledgeable about how to approach the journey.
