Safe Travel With Epilepsy?????

[Shutterbabe]

I have to travel by air often and alone. I find it very challenging with meds, especially when shifting time zones. The added stress of airports, long flights, etc.
makes me fear that I might seize. I do not inform the flight attendant because of possible reprecussions. Someone once told me that airlines can deny epileptics service? Myth?

Can anyone share thoughts on this? Should I be wearing Medical ID?

[brain]

I strongly recommend you wear a
Medic-Alert Bracelet. And if possible, keep
your Doctor's business card with you, your
list of medications, allergies, etc, in your
wallet.


Epilepsy Foundation - Airline/Flight Article Information

The new guideline makes it clear that individuals, with or without active seizures, have the Aerospace Medical Association’s sanction for air travel. It reads:

In general, most patients with epilepsy can fly safely. However, patients with uncontrolled, frequent seizures should be cautioned about air travel including the attendant risk of limited medical care capability inflight. Individuals with seizures sufficiently frequent to cause immediate concern should consider traveling with a companion ….

“Because airlines in the past showed a good faith effort to obtain medical advice,” said Eric R. Hargis, the Foundation’s president and CEO, “there was little recourse for passengers. We urge all airlines to adopt the Association’s revised recommendation and allow air travelers with epilepsy to enjoy their right to travel free of discrimination.”

[KAM]

I agree with Brain that you should have the Medic-Alert Bracelet. Before I had brain surgery, flying actually caused seizures for me. After the first episode (complex partial), I began to hand a note to the steward/stewardess with something like this: FYI, I have E, in case I have a seizure, don't be alarmed, they will generally pass in a few minutes, I may be confused for xx minutes afterwards, but I will come around. They were grateful that I did it and said you explained exactly what happened and the information was very important. After surgery it took me a while to get back in the air again but when I did, I handed them a note again. The flight crew was great, they actually would make eye contact with me throughout the flight and occasionally ask if everything was OK. It didn't happen in flight after surgery but from my past experience, I am more likely to hand them a note each time.

[Bernard]

If you are taking a long flight, be sure to drink plenty of water during the flight (you can ask for water more frequently than just waiting for their regular service). Cabin air is very, very dry and can dehydrate you.

[Shutterbabe]

I appreciate everyone's response to my search for travel information. I like KAM's idea of quietly handing a note to the flight attendant. You have all been very reassuring. Getting ready for a very long trip on Thursday. Many thanks.

[Zoe]

Definitely go with the medic Alert bracelet or necklace as that will tell whoever helps you who to contact in an emergency. And absolutely go with the note. I did that when I lived in Denver, gave it to the driver whenever I got on a bus. The bumpy ride did trigger seizures for me often. The note helped put the driver at ease as she or he knew what to do when I seized and there was no need for alarm or over-reaction. ALSO , if you use a note, be sure and put in it not to put any objects in your mouth if you have a seizure. Some people still think that putting something in your mouth when you have a seizure can prevent you from biting your tongue, or, the folk tale went, swallowing it. Turning the person on one side can allow the mucous and anything coughed up to drain out and not back into the throat which can lead to choking. Once I had my little card made up and was passing it out, I felt much more at ease about travelling. Don't let the seizures keep you from doing whatever you want, just plan how to manage and go enjoy yourself.

[Shutterbabe]

After a 12+ hour journey and pushing well beyond my own physical theshold, I am safely at my destination. I did order Medical ID to be shipped pronto but they never arrived in time for my travel. I used a note as suggested and it gave me some peace of mind. I made strong life decisions during my trip because of thoughts provoked by everything I have learned and read on this site. You are all inspiring
and my personal heroes.

[speber]

These guys ROCK!

[RobinN]

Glad to hear that you made it safely home. I get tired just thinking about a 12 hr commute. I hope it was all worth the effort.

[Shutterbabe]

Worth it, yes, but the day after presents all kinds of challenges. Sleep deprivation, little shifts in schedule
become bigger things. I tend to be more vulnerable to seizures when I am away, unable to adhere to my diet, etc. Also the high altitude of being in the mountains gives me wicked headaches until I acclimate. But it is all so beautiful and my soul is happy even if my body feels a million years old
right now.

[maureen]

You are all amazing!

I am about to fly to Australia for 5 weeks. The whole trip will take over 24 hours. I will have my husband with me but I'm glad I read all of your suggestions. I may pass a note to the flight attendents even though he is with me just to give them a heads up. Also Bernard's reminder about keeping well hydrated is a good one, it's simple but I hadn't thought of it.

[Shutterbabe]

You are going on a wonderful adventure and I pray that it is smooth flying and only happy times.

[Birdbomb]

Shutterbabe

I used to wear a medical alert necklace. The 2 major experiances I had with emergency personal, was disappointing. Neither time did they even SEARCH for medical alert jewlery. But because I have some unusual situations, my medical history needs to be available. Whenever I leave my house, I carry a small agenda notebook with me. Right next to my wallet.

The first page has all the medial info.
Medical conditions
Medical Implant Information
Current Meds
Drug allergies

The second page has all my surgeries listed according to date.

Then comes
Every doctor I currently see, phone, address and their speciality
Emergency contacts

This little black book impresses the medical staff of some of my doctors. They don't have to write anything down, they just take it to the copier and make copies for my files! Easy-sneezy!

I really SHOULD be wearing a MA bracelet, but just can't see putting out the money when they won't even look for it.

Another advantage of informing others of your medical conditions, it reduces YOUR stress level. You won't have to keep worring about what happens if you have a seizure! You are sharing the burden.

[brain]

Ditto on what Birdy said, I have the exact
same thing!

WELCOME HOME SHUTTERBABE!

And Maureen with that long distance of a
travel, it would be a good idea to keep a
duplicate in your suitcase as well (in case
if your wallet gets stolen). A friend of my
parents who has medical problems SPLITS
his medications when he travels; because
he takes 2 suitcases, he has half in one
and the other half in the other, so if one
gets lost, he still has his other right there,
and of course he has the meds he needs
for the day and the next day on him always.
(Just in case - he is a worry wart but he
played it smart!)

I think if I remember it correctly he had
cardiac problems, diabetics, asthma, etc.
But he was in the travel group quite a few
times when my parents traveled worldwide
tours. My parents learned a lot from him.
And they didn't even know that if your meds
were ever stolen you could go online and
get them, if the pharmacy is available, and
you can also obtain them via the Embassy
if necessary. I can't remember what all they
learned from him. But they learned a lot!

[Shutterbabe]

Thanks for the warm welcome, Brain! Birdbomb and Brain's comments are excellent ones. I always carry a 7 day dispenser of extra medicines in my briefcase if I am ever delayed at a destination. I had 3 severe seizures a few weeks ago and had to remain longer than expected on a photography trip to recover. I was so grateful to have my surplus with me! I am now carrying 2 extra weeks worth of meds- dare I say it?- for my peace of mind.

Another thought but it is an expensive one: I once took out a year's membership with a medical jet assist company who provides transportation/pick-up from all over the world if you have an emergency that fits their guidelines. They will provide a cell phone at a reasonable cost as well. I know someone who was airlifted by this company from Brazil to the hospital of their choice within 24 hours. I have let my membership lapse because of financial reasons but would renew without question if I was venturing to Europe or afar again.

[TBI]

Definitely go with the medic Alert bracelet or necklace as that will tell whoever helps you who to contact in an emergency. And absolutely go with the note. I did that when I lived in Denver, gave it to the driver whenever I got on a bus. The bumpy ride did trigger seizures for me often. The note helped put the driver at ease as she or he knew what to do when I seized and there was no need for alarm or over-reaction. ALSO , if you use a note, be sure and put in it not to put any objects in your mouth if you have a seizure. Some people still think that putting something in your mouth when you have a seizure can prevent you from biting your tongue, or, the folk tale went, swallowing it. Turning the person on one side can allow the mucous and anything coughed up to drain out and not back into the throat which can lead to choking. Once I had my little card made up and was passing it out, I felt much more at ease about travelling. Don't let the seizures keep you from doing whatever you want, just plan how to manage and go enjoy yourself.

I am glad that I am not the only person who says place the seizing patient on their side to reduce the chance of aspiration . You would not believe how many times I have to tell others that my daughter MUST be placed on the floor, on her side until she completely regains function. I have heard over and over that my daughter responds better to being held/hugged. I lay my daughter down on her side and kneel on the floor behind her. I talk to her in a reassuring voice and gently hold her arm to keep her at a safe angle.

Karen