Traveling with Epilepsy...

[Intothatendlessblue]

What has been your experience traveling (boat, plane, car... whatever) with Epilepsy?
The more I travel and I'm forced to tell people that I have Epilepsy (like the flight crew so they are prepared in case something happens) the more I wonder what other people have been through, so... anyone want to share?

 

[Janus]

What a great thread. I wish to share notes. I travel a lot. and will be going to Wisconsin again on Wednesday. I have always been a bit fearful of telling the flight attendants because of what they might think (even when nothing happens). Maybe I am a big wimp then? I just never say anything? Is it not the best policy?

 

[Intothatendlessblue]

At first I didn't think it was a good idea to tell anyone about my epilepsy. It's under control (kind of) and chances are nothing will happen. Then my Mom made a good point. If I did have a seizure while flying, the fall out would be crazy. If I had a seizure and the crew was prepared, it would perhaps be more organized chaos.
I didn't think of telling the flight crew when I took my first flight after I started having seizures... then someone mentioned I should. Later, I was flying back from Turkey and I walked up to one of the flight attendants. I was straight to the point; I told him that I had epilepsy and it was 'controlled' by medication. He was a bit scared... but handled the news spectacularly. For the most part that has been my experience. People in some industries are better prepared to deal with Epilepsy than the everyday individual.

 

[Janus]

Thank you, I will try being more forward.

 

[kirsten]

I have an aversion to telling people (who aren't close friends) that I have epilepsy. As far as I know, flying doesn't exacerbate it (does it?) and I don't like to be seen as the 'sick person.' I am not so sure it would make a difference if flight attendants did know about my epilepsy in the event of a seizure but if I was concerned about the risk I would choose to wear a medic alert bracelet rather than run around telling the world. But as long as I don't go into status, a seizure is not a major event in terms of my safety, so I don't take those sorts of precautions. There is nothing attendants could do if I did have a seizure and I'm pretty sure those with other conditions don't run around telling everyone about them so I don't see much of a reason to be different. I want to feel as normal as I can and I don't want to be treated differently than others. I value the freedom I have to do that. If people panicked around a seizure, well, I figure it'd be over in five minutes so damage would be minimal. I've seen one epilepsy patient have a seizure in a store and they called an ambulance, which carried them off on a stretcher. I'd hate it if there was such a fuss made for me.

 

[Intothatendlessblue]

Kirsten,
I generally agree with you. I absolutely hate telling people that I have epilepsy. However, I've found that when I'm under physical or mental stress my seizure threshold is greatly lowered. I wrote the message earlier right before I got on a flight from Phoenix, AZ to Charlotte, NC. While on the plane I had the longest Aura I've ever had. It lasted about thirty minutes and I was terrified. I've never had a seizure while awake and here I was, fairly certain that it was going to happen... while I was on an airplane. Yes, there is nothing the flight attendants could have done, but the way they responded because they understood was heartwarming. They didn't single me out as sick. They didn't linger or fuss. They would come by and ask how everyone (including me) in the area around me was doing. When the aura got worse they brought water for everyone around me so that I wasn't the only one drinking it or asking for it. When it didn't seem to be going away one of the flight attendants made it a point to be close at hand and had moved the emergency kit closer. While the kit would have been useless it was amazing to know that I wasn't alone up there. I wasn't trying to suppress and control what was happening without anyone to help or support me. I've also been told that when I have a seizure I sound like a cat screaming... so it wouldn't be something I could hide or try to keep quiet.
I value my freedom and I value being treated like everyone else, but I can see the importance and value of being honest and open when the situation calls for it.
-Mary

 

[Cint]

I've seen one epilepsy patient have a seizure in a store and they called an ambulance, which carried them off on a stretcher. I'd hate it if there was such a fuss made for me.

I've been one of those patients, although it didn't happen in a store. By the time I arrived at the hospital I was fine and there was nothing they could do, except send ME the bill. And I HATE it, too!!

I have also flown quite a bit ( before E, I was in the airline industry + I was married to a pilot), and like Kirsten, I've always worn my MedicAlert bracelet. I also got a letter from my dr., just in case. When making reservations, sometimes I would tell, sometimes I would not. But I didn't tell the flight attendants. I've flown across the U.S. many times and to Canada and Europe several times and only once on the plane did I have a mild aura. And one time while on a layover, I had a SP, but to me it wasn't that big of a deal since it didn't last long and I was able to get to the restroom.

I know that I could have one any time, but I don't feel the need to tell the flight attendants. Most people who are not educated about E "freak out" about it anyway. And I do have CP's and TC's, but never have I had one in flight.
But sometimes, it has been a problem the day after flying.

 

[kirsten]

I've been one of those patients, although it didn't happen in a store. By the time I arrived at the hospital I was fine and there was nothing they could do, except send ME the bill. And I HATE it, too!!

This made me laugh, if only because I have had exactly that experience, leading to a pointless bill that cost a fortune on two occasions. I must say if I really thought I was about to have a tonic clonic I would feel more comfortable telling the stranger next to me than the flight attendants. It'd draw less attention and take care of the problem.

 

[Cint]

This made me laugh, if only because I have had exactly that experience, leading to a pointless bill that cost a fortune on two occasions. I must say if I really thought I was about to have a tonic clonic I would feel more comfortable telling the stranger next to me than the flight attendants. It'd draw less attention and take care of the problem.

:agree: The flight attendants may tell the pilot and he/she may decide to land the plane if you have a TC in flight. Definitely if you were to go status.

 

[Courtneysmom]

Hi Everyone, i'm new to this page, My 18 y/o daughter has epilepsy along with Cerebral Palsy and we have often talked about taking her to Disney in Florida for a vacation. She would love it but i was always nervous about her flying with her epilepsy and had a fear of a big unnecessary scene being made ..after reading some of these posts i'm starting to figure out we are def not alone feeling like this. And i am feeling a little bit better about taking that vacation with her.

and i agree with Cint, my daughter has been carted off the the ER after a seizure at school so many times and by the time she gets there she's a little sleepy but otherwise perfectly fine and the only thing they can do for her is do blood work and then send her home. Finally and thankfully she has a teacher this year that understands that she doesn't need to call 911 everytime Courtney has a seizure. throughout her school years most teachers had her in the ER a couple times a month sometimes. it really didn't make any sense but they wouldn't take my word for it that she didn't need the ER with every seizure.

 

[masterjen]

How does everyone handle the issue of travel medical insurance? One is required to release details of their medical history in order to receive added insurance, especially if traveling out of country.
I live in Canada, and to travel to the US, for example, and if you do not disclose seizures on the medical insurance form and an incident does occur that requires treatment (eg. you tripped and broke your wrist), the cost for treatment would be out of pocket. And because you are out of country, the cost would be way more than if you were from the US. Even if you do have insurance and disclosed that you have seizures, if there is any way the insurance company could blame the epilepsy for the cause of the fall (even if it wasn't the cause), payment would still be out of pocket. And of course if you do not disclose the epilepsy, the insurance would be entirely null and void for ANY incident that required medical treatment. So for most insurance companies, one has to be seizure free for 2 years, with a doctor's letter stating so, before you can declare that you do not have seizures.
So back to my original question: how do you handle this in the States? Is it a non-issue if traveling between the different states in your country?

 

[Cint]

Hi Courtneysmom,

Sorry your daughter has had such a rough time. Glad to hear that a teacher was finally listening. Must be soooo frustrating.

I'd say go ahead and take that vacation to Disney World. Get a letter from her dr. and make sure you have all the proper meds that she needs. Also, take into consideration the difference in crossing the time zones and what effect that may have on her. You may need to take an extra day for rest. That is always what I had to do, just to make sure I had adequate sleep to help keep seizures under control.

From http://www.epilepsy.com/epilepsy/travel_types

~When considering air travel, talk to your doctor first and consider the impact of changing time zones, sleep deprivation, and long delays or travel times on your seizures and whether air travel is recommended.

~Travel with a companion – this is especially important for people with frequent seizures or seizures with a change in your awareness or behavior, or for those who are traveling long distances.

~Bring a letter from your doctor describing your ability to travel by airplane and carry a completed Seizure Plan outlining what to do should a seizure occur.

~Talk to the airline in advance – ask for special seating arrangements so you are closer to the front where you can get help if needed. If possible, ask for an empty seat next to you so you can lie down if a seizure occurs.

~Carry a supply of medicines with you (in properly labeled bottles) so it is available if you need it during the flight.

~If you (or your child) have clusters of seizures and use ‘as needed’ medicine, talk to the doctor in advance about how to manage these...

 

[C0urt]

back when my epilepsy was BAD, i flew and it was handled well, flight attendants see so much crap on a day to day basis, we are probably the at the bottom of the list unless one of us dies or craps out a baby while seizing.

 

[Cint]

How does everyone handle the issue of travel medical insurance?

Our insurance covers issues if they happen while traveling. Even overseas.

So back to my original question: how do you handle this in the States? Is it a non-issue if traveling between the different states in your country?

With most insurance companies in the U.S., it is a non-issue if traveling from state to state