Epilepsy Talk

12 Epilepsy Travel Tips | July 8, 2014

Traveling has never been easy, and people with epilepsy have always had to think twice about safety and managing medications while traveling. Ever 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 increased concerns about the possibility of having a seizure during a flight.

And not everyone knows what a seizure is or what to do. They may not recognize certain behaviors as being caused 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.

So it’s mandatory to have written information from your GP or neurologist which explains about your epilepsy and the anti-epileptic medication you take, together with a list.

In short, protect yourself and identify who you are to avoid any mistaken perceptions.

Carry a Medical Alert Card or wear an ID bracelet at all times.

There’s a very effective medical bracelet called The Medic Alert Bracelet from the Medical Alert Foundation. It’s got a 2-way monitoring system that with a touch of a button, can alert medics, ER docs, etc. with your medical history, meds, doctor’s name and emergency contacts, all from a 24-hour call system. http://www.medicalert.org/

At the very least, your medical ID should include:






And of course, it’s important to plan in advance…

Medicine Supply

Take enough meds with you to last double the length of time you will be away and keep the medicine in properly labeled bottles. If you need extra bottles, ask your pharmacist to give you an extra labeled bottle.

Carry one supply of medicine (enough to last the length of your trip) with you in a carry-on bag. Then put an extra supply in a checked bag. If you lose your carry-on, you’ll have more in your checked bag. However, if your checked bag gets lost, you’ll still have your carry-on bag. You also want to have a supply available with you during long travel times, so you can take your meds on time.

Just for your peace of mind, check to see if the medication you take is available where you are going. If you are traveling for an extended period of time to another country, you may need to get refills. (Especially since many pharmacies – because of insurance – only give you a 30-day supply of meds at one time. This makes me crazy.)

Or, in the worst case scenery, have your doctor and pharmacist’s name on hand if your meds run out or go missing. (I was in Wyoming during 911 – I live in PA – so I was really in a pickle. Finally a pharmacy there contacted my pharmacy, who contacted my insurance company for permission to renew my prescription!)

Medication Schedule

If you take medication at regular intervals and are traveling to a different time zone, then you may need to gradually adjust when you take your medication, so that you can take it at an appropriate time of day. These changes will depend on how far you are traveling and for how long.

Talk to your doctor about any changes in your medication schedule that may be needed. There are new meds 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.

Take a written list of medicines with you. It will help you remember when to take your pills, and it may be needed as you go through security checkpoints or if you need to get medical help while you are away.

People who take the same amount of medicines twice a day can stick to their usual schedule, adjusting the time you take pills a few hours to keep you on schedule.

People who take medicine three or more times a day, or others who take different amounts of medicine twice a day, may find it difficult to keep to their usual schedule. Sometimes the pill schedule can be adjusted for the day of travel. Or try adjusting the times you take your meds for a few days before traveling — this can help you adjust to a new schedule more easily.

To help you remember your meds, check off when you have taken a dose on a chart or a seizure diary. Try using a daily marked pill-box to keep track of your medicine. Also, have an extra for different times of day you take your meds and label it.

Traveling with a VNS

To avoid being unnecessarily delayed or questioned, carry your VNS registration card. (My friend has a titanium hip and sets off every alarm in the airport. So he carries a special ID card.) People with a VNS should also bring information about the magnetic device or a brief note from the doctor so they don’t think you’re a bomber or threat to security!

Travel Checklist

1. Bring a Medic Alert card or wear an ID bracelet or necklace 

2. Carry a Seizure First Aid card with you, if you can https://craighospital.org/resources/seizure-wallet-card

3. Be sure you have two supplies of medication – one for your carry-on and one for your suitcase, in properly labeled bottles

4. Also, take along extra medication and prescriptions

5. Talk to your doctor or nurse about how to take your meds. Will you need to change the times if you are traveling across time zones?

6. If you have a VNS, carry the registration card and information about it from your doctor.

7. Ask your doctor or nurse for a letter stating that it is safe for you to travel and include:  

8. Type of seizures and what they look like…

9. What to do if you have a seizure…

10. A list of medicines and doses that you take…

11. Doctor’s name…

12. Contact information.

And don’t forget to get enough sleep before and during your trip. (Even if you are excited!) A lack of sleep and jet lag can trigger a seizure.

Bon voyage and have a safe journey! 

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  1. You are right, traveling in the past was MUCH easier. I had a VNS then and got on the plane from California to Florida. No problem with me having epilepsy, and having the VNS back then in the mid 90’s.


    Comment by Shawn Wittman — July 8, 2014 @ 8:49 PM

  2. This is very useful, practical information. Thanks so much! Love this blog!


    Comment by Martha — July 8, 2014 @ 8:50 PM

  3. Good to hear from you Martha. Thanks for the complement. (Always welcome!!!)


    Comment by Phylis Feiner Johnson — July 9, 2014 @ 8:31 AM

  4. Thanks! With my winter trip about 5 time zones off I will be adjusting my med times. On a side note for those of us traveling by air, you are permitted a medical carry-on and that does NOT count as a bag. I often pack medical into a shoulder pack when I fly. That way there is no way for my baggage to be lost, and I know they are in a safe temperature range. I always carry my neuro’s card on me. In my bag I usually have trays filled. With how security can be fussy I carry the script papers from the pharmacy with them.


    Comment by Travis — July 15, 2014 @ 5:30 PM

  5. Great tips. I think between my pocketbook and briefcase (which is HEAVY), I have no choice but to stick my meds in my pocketbag. (Which, when I travel is huge, with a smaller one in my luggage.)

    Not quite on the topic but here are some packing tips I read online — many of which could be very useful.




    Comment by Phylis Feiner Johnson — July 16, 2014 @ 9:43 AM

  6. Security these days is relentless. They check my briefcase, which like yours, is VERY heavy and it’s a pain to put it all back together again.

    One guy said I shouldn’t carry so much. Brilliant!


    Comment by Phylis Feiner Johnson — July 23, 2014 @ 12:51 PM

  7. I recently purchased a medical ID from MyIDSquare.com – not only do they have wonderful epilepsy charms to hang from a bracelet but their squid IDs connect to your medical info online and alert your contacts from anywhere in the world. They’re really great looking too. I love mine! And there is no yearly or monthly fee for the online info. I’ve been telling everyone about it.


    Comment by Ernestine Griffen — August 9, 2014 @ 10:49 AM

  8. Wow, Ernestine, you just read my mind! An hour ago I edited Kid’s Medical Alert Jewelry That’s Functional And Fun to include the SquID tile.


    I should probably add it to the grown-up version too:
    Attractive Epilepsy Alert Jewelry


    Thanks for the endorsement! 🙂


    Comment by Phylis Feiner Johnson — August 9, 2014 @ 11:46 AM

  9. Reblogged this on TBI Rehabilitation.


    Comment by Kostas Pantremenos — August 11, 2017 @ 6:43 PM

  10. Traveling alone can be terrifying, but people can be amazing as well. I was traveling solo back in July. I had been fine the entire day, and was as far as printing my plane ticket at the self check-in when I felt myself going into a heavy simple partial. The last thing I remember is tapping my medical bracelet and midazolam spray bottle at a stranger. Next thing I know, I’ve been brought through tsa etc and I’m on the correct plane! A flight attendant told me that this person didn’t leave my side the entire time!


    Comment by Sierra — September 27, 2018 @ 1:57 PM

    • There ARE good people in this world!!!

      Good thing you had your medical bracelet and midazolam with you.

      Not all people are that well prepared.


      Comment by Phylis Feiner Johnson — September 27, 2018 @ 2:17 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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