Epilepsy Talk
12 Epilepsy Travel Tips | May 23, 2012
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 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 FREE Medical ID Card that you can download and print on your computer. http://medids.com/free-id.php
And 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/
Another suggestion is to carry the EFA’s easily portable first aid wallet card that’s 3.5 x 4 inches and can be folded, with instructions for managing different seizures. (Price: $3.25) http://shop.epilepsyfoundation.org/store/p/746-First-Aid-for-Seizures-card.aspx
At the very least, your medical ID should include:
FIRST AND LAST NAME
EPILEPSY OR MEDICAL CONDITION
MEDICATIONS AND ALLERGIES
EMERGENCY CONTACT NUMBERS
DR. PHONE NUMBER
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 the EFA wallet sized Seizure First Aid card with you
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!
Resources:
http://my.epilepsy.com/epilepsy/travel_managing_medications
https://www.epilepsyct.com/article.php?id=43
http://www.epilepsy.ca/en-CA/Coping/Living-with-Epilepsy_/30197/Women.html#ii20
Tags: checklist, contact information, double medication, Epilepsy, explanation, first aid, FREE ID, medical alert card, medication list, refills, schedule, Tips, travel, VNS
23 Comments »
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Having traveling abroad having your prescriptions along with the labeled prescriptions in smaller containers in carryon is a must! I had trouble in a transfer until I showed the doctor’s prescriptions and labeled containers. That was in London, England.
The VNS has a card that goes with it bring it with you with a short note from your doctor when it was installed, where it was installed. Why it is used for.
Most of the time they don’t ask like they used to. Make sure you have the card filled out!
If you have an inhaler bring the box with the prescription information on it. Just from past experiences!
Medic Alert has great travel insurance, I have heard people actually using it in emergencies. If you needed medication, you are in another country someone to help you speak their language to help you communicate.
Comment by Toni Robison — May 23, 2012 @ 6:11 PM
Wow! I didn’t think of the translation part. I guess it would be good to know what your meds are named in the country you’re traveling to, because often the same drugs have a different name.
Another thing to worry about.
Comment by Phylis Feiner Johnson — May 23, 2012 @ 6:30 PM
I have been wearing a Medic Alert bracelet for years.. On NO occasion, when I had either a seizure or a “difficult moment” (one that led to an ER visit or a hospitalization) did ANYONE look at, or keep in my personal property file (along with my gold rings, which I actually got back) that bracelet. It was not gold or silver, it was bronze or brass. The hospital threw it out with my undergarments, which they removed with some scissor like device. My husband asked for it, and no one had it. How can I, CAN I, urge my local hospital to know that they SHOULD be reading any and all of those?
meesher@pacbell.net
Comment by meesher — May 23, 2012 @ 7:37 PM
Well, they weren’t to bright. Maybe you should wear a sandwich board, so they could get the message.
Comment by Phylis Feiner Johnson — May 24, 2012 @ 9:35 AM
I’d love to read more about traveling with vaccinations! Especially to third world countries where malaria medication is required and what kind of reaction it can cause.
I take a medication that lowers the threshold of my seizures. For the most part, I didn’t have very many while there, but still had to deal with it with a team who didn’t know me. Any suggestions?
Comment by Liza — May 24, 2012 @ 12:06 AM
Travel to some destinations, and re-entry to the United States from others, requires immunizations. Some immunizations are optional and/or solely for your protection; others are mandated, such as Yellow Fever vaccination for travel in infected areas of Africa and Latin America. For detailed information, query your destination at the Centers for Disease Control and Prevention website.
Make a consultation appointment with an international travel clinic approximately two months prior to your departure date. The travel medicine clinician will take a full medical history, including your prescriptions, and make immunization recommendations, balancing your likelihood of exposure with any side effects you might experience and any conflicts with your anti-seizure medications. Certain immunizations are not given to women who are pregnant, or who intend to become pregnant within several months of travel.
http://www.epilepsy.com/pdfs/journal/EJIS-Issue1-1a.pdf
International Society of Travel Medicine
http://www.istm.org/
Comment by Phylis Feiner Johnson — May 24, 2012 @ 9:48 AM
The best travel advice I have is ‘Take someone with you if you can’. I was blessed to have people around me that knew I had Epilepsy, and when I’d start seizing they would steer me to a safe place.
Comment by Charlie — May 26, 2012 @ 7:21 PM
I would recommend taking someone who’s familiar with your background of seizures too, but when you’re a missionary it’s a little bit more challenging!
Medications, vaccinations, team members you ‘ve never met, cities with lack of medical facilities, or even knowledge of medical treatment, much less even consider seizures as… modern day seizures that are not witchcraft. It’s exhausting. It was no wonder my doctors wondered why I should not have gone to Uganda but I took the risk anyway… It wasn’t the flying I was worried about, on top of having to worry about wearing a cochlear implant, so I can’t go through body scanners anyway. So why should I be worried about it? Just take the risk as long as you educate yourself about use preventive measures (anything like drinking enough water, sleep, time change, etc).
Comment by Liza — May 27, 2012 @ 3:21 PM
Liza, you should DEFINITELY read “A Great Place for a Seizure” by our good friend Terry Tracy. The big difference is that she’s a journalist.
Terry Tracy, has worked as a human rights activist, journalist, and US diplomat. In 2007 she wrote the charter for an association of disabled employees in the US State Department. She has had epilepsy for 30 years.
Terry Tracy was born in Virginia and moved around Latin America in her childhood as an army brat. After college she worked as a receptionist, then left to work for free in Honduras at an orphanage. Terry returned to work in a human rights organization in Washington DC, then left for Guatemala to work as a free-lance journalist. By this time an addiction to wanderlust was clear. In denial, she crossed the Atlantic to Cambridge to earn a master’s degree for her research on an obscure, but nevertheless intriguing, topic (indigenous litigation in the 16th century Spanish colonial judicial system). When she returned to the United States she joined the establishment. In 2007 she left the US State Department to take turns as a stay-at-home parent. Terry is Asian-Irish American and currently resides in London with her German husband and their Asian-Irish-German-American daughter.
A Great Place for a Seizure
A Great Place for a Seizure
Comment by Phylis Feiner Johnson — May 28, 2012 @ 9:12 AM
Phylis! That is actually a book on my amazon wish-list! I saw that came out recently and got so excited that there was something out there for women with professional experiences! I was actually so excited I started jumping for joy but I am already reading so many books right now but I am definitely looking forward to reading it when I get a chance.
Thanks for reminding me to look into it! Do you know her personally?
Comment by Liza — May 28, 2012 @ 9:31 AM
As usual, fabulous (and sensible) advice, Charlie!
Comment by Phylis Feiner Johnson — May 27, 2012 @ 11:09 AM
Liza,
Make “A Great Place for a Seizure” your next book. It’s so good I read it one day. (And I’m a slow reader.)
Then if you want to talk to the author, I’ll give her your email address.
Comment by Phylis Feiner Johnson — May 28, 2012 @ 1:13 PM
I’m in the process of reading about 4 out of 20 books right now… haha. But will definitely add it! When I am ready, I’ll ask for her email. I’m sure I’ll have tons of questions, I feel like I have a few already reading the except on Amazon.
Thanks!
Comment by Liza — May 28, 2012 @ 1:33 PM
ARGH!! I just tried commenting and my browser jumped back a page. Lets try again.
I have to say I disagree with placing medications where you cannot keep an eye on them (meaning checked baggage). A trick I learned last winter was you are allowed to have medical bag. This could be tools for adjustment of artificial limbs, medication, or others. I packed a soft shoulder bag with my trays and pill bottles. This does NOT count as a carry-on. I then had a full size carry-on, and a shoulder pouch (some call them a “man purse”).
It would have been a hassle if I were to order my scripts where I stayed. I would have had to transfer ALL my scripts down from my home pharmacy, and then turn around and transfer them back when I returned home. I just had the pharmacy request a waiver and filled my meds early.
I usually do NOT travel with the pills in their bottles. They cannot object to you having pill trays that are filled. Last I checked, you are NOT required to have the pharmacy slips with the trays. If you are transporting medications in containers not from the pharmacy, they will object. They want the meds transported in the bottles they were dispensed in.
I do travel with my medical card about the star point closure just in case the scan causes problems. I also bring to the front my Dr’s card and the First Aid for Epilepsy card(s).
One thing that happened in my case was I had a seizure (and hospital stay) before even getting to the airport the year prior. My ticket was held over and I used it last winter. The thing that made me mad was I had a phone call from the airlines asking me about my seizures! If you have your seizures under control, they cannot demand a note from your doctor. HOWEVER if you recently were hospitalized due to your seizures, or recently underwent surgery, they may request a statement from your doctor (the airlines CYA policy). I was mad because they KNEW about my being hospitalized for a seizure. I feared they would hassle me every time I flew with them. Being I haven’t flown since that trip, I don’t know if what they said is true (that it wouldn’t follow me).
Comment by Travis — May 29, 2012 @ 5:15 PM
Lots of good advice Travis. I never knew you were allowed to have medical bag.
So do you advise people to travel with their med trays and NOT the actual script bottles themselves?
How soon before your refill dates was the waiver? I could have easily gotten a waiver from my pharmacy, but I’d have to pay full boat. (Ugh.)
As for the airline, of course they were being paranoid about you having a seizure. How did THEY know your seizures were under control.
It’s sort of a “not on my watch” kind of thing.
Comment by Phylis Feiner Johnson — May 29, 2012 @ 6:01 PM
Traveling with medical bag is an option. It all depends on how long you will be gone and what you need for medications/medical devices. I’d say it doesn’t hurt. This can also apply if you need a CPAP or other medical devices at your destination.
I refilled at about 20 days. The waiver is something that patients can use; at least on Medicare in my case. I explained I was going to be out of state for 30 days, so that likely helped.
I’m guessing the person who paid for my flight (mom) let it spill when she wanted to hold the ticket for use later rather then allow the ticket to be wasted. Medical at times CAN be used to keep the credit as long as the problem is before the flight…least thats what American Airlines said.
Comment by Travis — May 30, 2012 @ 1:02 PM
Back in my ‘bad boy’ days, I dealt with an Airline straight on. I didn’t particulary care what their policy was. I told one particular airline person, snooping in my “Pill Bag”. [You keep jacking with me and I'll have a #%$^&$# Seizure right here! Would that prove to you I need them?] “Now give me my stuff and get me on that plane!”
I’ve mellowed a lot since then, but sometimes Dealing head-on with a situation works. Then again, sometimes it might get you kicked off the plane. ;o)
Comment by Charlie — May 29, 2012 @ 7:06 PM
Well, you sure took the bull by the horns!
Comment by Phylis Feiner Johnson — May 30, 2012 @ 9:47 AM
Wow Travis! That’s a lot of good and useful information. Thank you.
Now all I have to do is go somewhere!
Comment by Phylis Feiner Johnson — May 30, 2012 @ 2:35 PM
Hi, I’m a bit late in on this topic but would like to add a couple of things if that’s ok! I’m from outside the US but have done a lot of travel around Europe, a bit of Asia and Australasia. I won’t go anywhere near the US simply because the security situation in general has put off tourists, plus the cost of travel insurance- especially if one has a pre-existing medical condition- is about twice as high as for anywhere else. So not worth it financially or practically.
On the insurance side of things, there’s been a global clampdown by the insurance companies on pre-existing conditions in the last couple of years. I went from being totally insurable for my ep to uninsurable to insurable for a massive surcharge, with no change in my medical status. So they’re making it a lot harder. Some years ago I had the misfortune to have a tonic clonic sz on a long haul flight. Fortunately I was travelling with a family member, ie someone to explain to the crew- but the airline was far from happy. lets just say that having the pre-existing insurance was well worth it! If you’re travelling outside of your own country, no matter how well controlled your szs are, then get insurance, especially with E which is totally unpredictable.
i fully agree with all the other tips made here re meds. If you’re travelling through Asia (where you do NOT want to get in any trouble for carrying drugs) then go to the front desk before going through Customs. Tell them you’re carrying prescription medication and do you need to declare it, and have your meds paperwork handy. I was very surprised that I didn’t have to declare, but asking them covered me.Europe don’t care and Australia do ask on their customs form, so just declare it, but they don’t seem to care much either.
Can I also add a couple of tips if you’re doing long-haul flights- make sure you’ve had plenty of sleep pre flying. On board stay hydrated- keep sipping water and juice (no caffine or alcohol), it’s easy to dehydrate without realizing.
Always a good topic to bring up Phylis
katie
Comment by katie — June 9, 2012 @ 7:06 PM
Wow Katie, you’ve really been around the block (or world!) a lot. And yes, between the costs, the security and the attitudes, travelling to and even THROUGH the U.S. is not fun.
So much for “The Friendly Skies of United!”
Tell me, when you were talking about insurance, were you talking about FLIGHT insurance or general insurance?
Thanks lots for the very useful tips. The more the better! (And there’s no such thing as being “late” in posting!)
Comment by Phylis Feiner Johnson — June 10, 2012 @ 2:23 PM
I’m referring to comprehensive travel insurance which covers travel delays, theft, lost luggage, accidents and non-preexisting medical costs.
I live in fear that I might get the opportunity to go to the US because I’d have to say no. A real shame because there’s a few places I’d love to see. Last time I looked insurance to the US would’ve cost me more than to Africa primarily because of the health component! (Not that I’d ever go to Africa, there’s some parts of the world where one would’nt want to have a medical emergency in so common sense really).
Comment by katie — June 14, 2012 @ 1:00 AM
It’s sad, but I can certainly understand. Here’s a book you might want to read. I think you’ll find it very interesting.
“A Great Place for a Seizure” by Terry Tracy
A Great Place for a Seizure
Comment by Phylis Feiner Johnson — June 14, 2012 @ 8:35 AM