Traveling with Epilepsy

The captain’s voice breaks through my efforts of ignoring my talkative seat mate, who is practically sitting in my lap. “Due to a severe thunderstorm and circling the airport for an hour waiting for a safe break to land, we are running low on fuel. We will divert to Greensboro, NC to refuel. Those with connecting flights I apologize we will try to reschedule you for flights tomorrow.” While everyone around me is grumbling because of the inconvenience I start to panic. Not wondering if I have a toothbrush or clean underwear but do I have enough of my seizure medication in my carry on. All my hours obsessing over an organized detailed travel itinerary to reduce stress is out the window.

 

This is my first time traveling alone since being diagnosed with Epilepsy. Can I navigate a strange city, find a hotel, find something to eat, get an uber by myself? The simple things that use to simply be an inconvenience are now huge potentially dangerous ordeals. Will the stress from figuring all of this out cause me to have a seizure alone in a strange place and then I have to figure out how to pull it together to get to the airport. My heart pounds, I break into a sweat and my mind races to try to figure out how to deal with the situation.

 

Then I start to worry that my acute distress may in fact trigger a seizure right here on the airplane. I force myself to not think about it, take deep breaths, and tell myself I can do this. Having epilepsy forces you to be brave, plan for things differently, and is always part of every decision made. It makes it more difficult to “fly by the seat of your pants” or deal with the unknowns. It demands bravery and effort but the reward is empowering as you discover that you can in fact live the life you want and not let epilepsy make you sit back in fear.

This ordeal made me think about traveling with epilepsy and here are a few pointers that have helped me.

 

  • Try to travel with someone if possible

  • Plan everything ahead to try to alleviate added stress

  • Pack for your trip a few days ahead of time so you get a good nights

    sleep before you leave

  • Wear a medical ID bracelet in case you are unable to communicate

  • Allow for extra travel time so you are not rushed

  • If you have a VNS it shouldn’t be affected by security scanners but may

    set off a metal detector so might be a good idea to let security know.

  • Always carry your medications with you at all times

    • Bring a little extra in case of travel delays. I carry it on me at all

      times but I also like to stash some in each bag I’m taking just in case something gets lost/stolen etc. You have back-up. Or if traveling with someone give them some to carry for you as well. Make sure they know where you keep your medications in case you need help.

    • Ask your doctor for a duplicate prescription to have on hand just in case or worse case they could always call in a prescription for you.

    • Make sure to continue to take your meds as you normally do which can be tricky with different time zones and being out of your normal routine. I’d recommend setting alarm reminders on your phone to help you stay on track.

  • If traveling alone let a flight attendant and your seat mates know about your epilepsy and what they can do if you have a seizure.

  • If flying request an aisle seat to give you a bit more space and easier if you happen to have a seizure for others to assist you.

  • Always have your phone and charger with you in case of emergency. Keep others updated on your travel status.

  • Use apps to make travel easier. Smart phones make it easy to do just about anything you need. Book hotel rooms, cars, order food if you don’t want to venture out.

  • Relax and enjoy your adventure

XOXO,

Mariellen

 

Mariellen is a women living with epilepsy, wife, and mother with two young children.  Her hobbies include kid wrangling, reading, yoga and cooking.  Mariellen is an Optometrist living in California. She was diagnosed with epilepsy at age 29 and has been a MES Ambassador since 2014.