Seizures and flying - anyone have experience?

Posted by tonyde @tonyde, Apr 5 1:30pm

I am interested in traveling from my home in Florida to visit my family in Kingston, NY. Driving or riding in a car 1,200 is out of the question. I am considering flying and my wife would be with me.

The possibility of a seizure inflight is a huge concern, yet I very much want to see everyone. What would happen if I had a seizure inflight?
I no longer care about people seeing me, however, I don't want an emergency landing because I had a 10 minute seizure that I would recover from within an hour or so.

I've had 6 seizures in March 2024, most lasted 10 minutes or less, one lasted an hour plus and put me in the hospital overnight.

Any thoughts?

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@tonyde
Good question for your neurologist.
Some say you have an increased risk if you have a history of frequent seizures. And seizures are more frequent for days after a seizure. But who knows, these seizures may have happened anyway.
I live in Central California and have flown to Seattle a couple of times, Denver and Los Angeles and San Francisco quite a few times but not as far as your trip.
When I flew to Los Angeles 300 miles away I was having seizures every day. I didn't have a seizure on the plane but I did have one later that night, but that was expected. I was thinking about going to Australia once however, I decided against it because it's such a long flight. I believe around 17 hours.
Here is some information,
https://www.seizure-journal.com/article/S1059-1311(06)00061-6/pdf#:~:text=The%20position%20taken%20by%20the,seizure%20increase%20after%20air%20travel.
Take care,
Jake

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Definitely talk to your neurologist about it.

I have grand mal seizures, but, luckily for me they're rare. A year ago I flew to Australia with my husband. Even though it was unlikely anything would happen, we took one important precaution. We planned the seating around the worst case scenario. Depending on the type of seizures you have, that's something to take into consideration.

I really hope you're able to go.

All the best,
@hopefullibrarian

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@hopefullibrarian

Definitely talk to your neurologist about it.

I have grand mal seizures, but, luckily for me they're rare. A year ago I flew to Australia with my husband. Even though it was unlikely anything would happen, we took one important precaution. We planned the seating around the worst case scenario. Depending on the type of seizures you have, that's something to take into consideration.

I really hope you're able to go.

All the best,
@hopefullibrarian

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What did you do to plan the seating around the worst case scenario?

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We focused on how easy it would be to get me out of the seat and lay me down.
Flying conomy class, we looked closely at the seat configurations, and there were three spots that we thought would be best given my type of seizures and the fact that my husband would be there with me. He is very good at identifying when a seizure is about to happen, giving him the chance to get me in the safest position possible.
Our top choice was next to an emergency door because there's nothing immediately in front of the seats. However, blocking the door is a safety hazard, and everyone sitting in those spots has to be capable of opening the door. My seizures are stress induced, so in an emergency I would be the worst person to have near the door.
Our second choice was the the center row at the front of the cabin with the wall in front. That's where they often put families with very small children. There's extra floor space, and like the emergency exit row, no seats in front. The downside with that option is the likely proximity of screaming kids. Even so, it remained our second choice simply because of the space.
Our third choice was the very last row where there were two seats instead of three in the side sections. I would take the window seat, and my husband, the aisle seat. We would keep the armrest up between us making it possible to get me out into the aisle. No one would be on the other side of me. The galley was also a few steps away, and would be a good place, time permitting, to take me as an alternative to the aisle.
Due to seating availability we got the third option. It turned out that the aisle next to us was pretty much always blocked by people queued up, if not for the toilet, then to get something to drink. It may still have been a problem getting me to the aisle, but it was the best we could do.
There were a lot of factors at play. We based our choices on our particular situation. Factors included the low probability of having a seizure, the type of seizure, who was traveling with me, the seat configuration, and the duration of the flight.
These things vary based on the individual, and the situation. I felt better traveling knowing that we had thought it through and had a plan in place.

REPLY

Good advice. I can see where having the plan would reduce stress and therefore reduce the probability of a stress induced seizure. I've decided to hold off on my trip. My seizures have been more frequent and severe the last couple of months. I'd be traveling to a small town and concerned about the availability of proper medical care for an epilepsy patient.

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@jakedduck1

@tonyde
Good question for your neurologist.
Some say you have an increased risk if you have a history of frequent seizures. And seizures are more frequent for days after a seizure. But who knows, these seizures may have happened anyway.
I live in Central California and have flown to Seattle a couple of times, Denver and Los Angeles and San Francisco quite a few times but not as far as your trip.
When I flew to Los Angeles 300 miles away I was having seizures every day. I didn't have a seizure on the plane but I did have one later that night, but that was expected. I was thinking about going to Australia once however, I decided against it because it's such a long flight. I believe around 17 hours.
Here is some information,
https://www.seizure-journal.com/article/S1059-1311(06)00061-6/pdf#:~:text=The%20position%20taken%20by%20the,seizure%20increase%20after%20air%20travel.
Take care,
Jake

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Thank you for the information. I read the study you referenced and decided to postpone my trip. It implies that a person with a recent history of frequent seizures have an increased risk of a seizure a day or two after travel. My seizures have been more frequent and severe the last couple of months. Traveling increases my risk of a major event. Better safe then sorry. Thanks again.

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@tonyde
I have no idea about your medication, but have you considered changing it or adding additional medication's to your regime if you haven't already.
Was your 1+ hour seizure tonic clinic.
Jake

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My neurologist has me take diazepam while flying. It prevents seizures and so does Valtoco 10 mgs.
I fly regularly to and from Germany.
There is someone always flashing their light on their cell phones in my eyes. They don’t realize doing that causes seizures. I am allergic to all seizure meds. This is the only thing that works or use Nayzilam nose spray
(Prescription) but it knocks me out.

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@artemis1886

My neurologist has me take diazepam while flying. It prevents seizures and so does Valtoco 10 mgs.
I fly regularly to and from Germany.
There is someone always flashing their light on their cell phones in my eyes. They don’t realize doing that causes seizures. I am allergic to all seizure meds. This is the only thing that works or use Nayzilam nose spray
(Prescription) but it knocks me out.

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My neurologist is in the process of changing my meds in an attempt to regain control. I also have trouble with lights, the worst are strobe lights used on emergency and work vehicles.

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@jakedduck1

@tonyde
I have no idea about your medication, but have you considered changing it or adding additional medication's to your regime if you haven't already.
Was your 1+ hour seizure tonic clinic.
Jake

Jump to this post

I was unconscious, I didn't convulse, my muscle constricted, I was vomiting stomach acid and letting out blood curdling screams for an hour in my home and whatever additional time in the ambulance and ER.

Every muscle in my body ached for days, eating was difficult because my throat was so sore, my lungs hurt for a week and I still have some of the cough hanging on.

The hospital neurologist said the vomiting and screaming were caused by the rapid tightening of my chest and abdomen muscles.

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