Nocturnal Seizures

Hi @robertm1215
Poor sleep is well known as a trigger to seizures. I have had some seizures after long night flights (11-13 hours) because of poor sleep. Today, to avoid seizures because of long trips, I prefer day flights whenever possible.
Breaking up the flight is also a good solution pointed out by Jake (@jakedduck1).
Chris (@santosha)

Thanks for the reply, Jake. This was just the 3rd time we've flown after his seizures started, and the 3 hour flight within the same time zone occurred with no issues. So we are only just discovering the issue with longer flights and I had just started wondering if it was oxygen-related. It could also be a sleep issue, especially since the seizures only occur within a short time after falling asleep. The travel-related seizures have either occurred 1 or 2 days after long flights (8-10 hours spanning many time zones) or several days after a 5-hour flight where sleep schedules have been altered somewhat. Our tendency during vacations is to hit the ground running and pack a lot of activities into each day with little downtime so we may have to change our approach until we're comfortable that we've got it figured out. For cross country trips, it would be possible to break things up into shorter flights but that's not possible for overseas flights (e.g., Europe). He has avoided alcohol during travel so as to minimize the likelihood of a seizure since we are aware of the connection, but he indulges when he is at home with no issues. We did mention this to his neurologist after the previous flight-related seizures and he didn't offer up any solutions or additional medications to help minimize or eliminate the issue (other than increasing his dosage of Keppra which obviously did not prevent his recent seizure). We are fortunate that his seizures seem to have some predictability to them, unlike many others who suffer life-altering and unpredictable seizures. My son enjoys traveling and we enjoy having him travel with us but it is frightening and disheartening when dealing with a seizure in the midst of our travels (not knowing when or if one will occur). And there is a certain amount of guilt at treating him like a guinea pig since we don't know what types of travel will result in a seizure without actually going on a trip - starting with shorter trips and expanding from there. Rather than continuing to treat him like a guinea pig, I figured let me throw this out into the universe and see if anyone else had similar experiences and what, if anything, they did to resolve the issue. Thanks again!

Thanks, Chris. How long after those long flights did your seizures occur? Did you immediately try to adapt to your new location or try to stay close to time zone that you traveled from? Even if traveling during the day, it is challenging if your travels result in your arriving at your location at a time that throws off your schedule (i.e., you are ready for sleep but it's 9 a.m. at your new location). If you break up a flight, do you try and stay at your midpoint for a day to acclimate to things before continuing or is it just enough to land and takeoff again so that you aren't in a low-oxygen airplane for a continuous 4, 5 or 6 hours? Thanks much!

Hi @robertm1215
Like your son, my seizures (my seizures are mostly complex partial ones) do not occur right after the flight, but 1 to 3 days after arriving at my destination. They all happened after night flights from São Paulo - Brazil to somewhere in Europe, arriving at the destination in the middle or late in the morning. I believe my seizures were a result not only of the poor sleep during the flight but also the jet lag, trying to adapt to the new time zone as soon as possible (the time difference can vary from 3 to 5 hours, according to the country and time of the year) and, not always being gentle to myself. The way back is always easier with day flights, arriving in São Paulo late in the afternoon (evening in Europe), getting home, having dinner, and going straight to bed. Both I and my husband prefer those day flights, when possible, as the adaptation is far easier with very little jet lag.
On my last trip to Portugal (night flight) in May this year (4 hours of time difference) I made some changes which seem to work well with no seizures after this long night flight. After arriving at the destination, I had lunch followed by a nice long nap. I also tried to take it easy on myself the first days of my stay with little activity, listening more to what my body wanted. I also paid special attention to my meals, avoiding meat and having light meals (just fish and vegetables). To compensate for the jet lag, I practiced yoga (especially yoga nidra - a practice of 30 minutes can correspond to up to 3 hours of deep sleep) which seems to have helped to prevent my seizures. I did not force my body to adapt to the new time zone as soon as possible as I did the other times.
I have not yet had the experience of longer flights that need some break-up. But I and my husband have plans to visit Japan one of those days (27-hour flight, with no direct flights and a 12-hour time difference). This one we will need to break in two, with a stay of some days in the middle point of the trip. We still need to study the best way to do it.
I believe the body of each person is unique. It was through trial and error that I have been learning what is best for my body after such long flights.
Have a nice day!
Chris (@santosha)

Hi Lisa,
Thanks for the response and for connecting some of us on this forum.
From what I can recall, the only thing the neurologist mentioned was that the change in time zones likely plays a role. He also increased the dosage of Keppra from 500mg to 1000 mg, twice daily. Since my son has had several seizures while on the medication, I had questioned whether the Keppra was doing anything to prevent the seizures, especially since there is little to no research that explains why Keppra seems to work for seizures. But he cautioned taking my son off of the medication, although opened it up to the possibility sometime down the road.
For the last seizure, we did administer Nayzilam which had been prescribed by his previous neurologist. This was the first time that we had witnessed a seizure and were able to use it since it had been prescribed. We brought a couple of doses with us given our previous experiences with travel, although we were hoping to not be in the position to use it. We can't be certain but it did seem to shorten the length of the seizure and limit the after-effects (since the last seizure (which was unobserved and likely lasted a few minutes) resulted in severe back pain for 1-2 weeks). He was out-of-it for most of the next day with some tingling in his hands and leg weakness but he was back to normal within 24 hours (although feeling down and frustrated). Thanks again!

Hi Chris,
This is very helpful. I wasn't familiar with the term "complex partial" but my son suffers full blown grand mal seizures. I also believe that each individual is unique and no two cases are the same so an individual approach is needed.

How long have you been dealing with seizures? Had they only occurred after long travel or did something else trigger them? Do you take medication?

I like your approach and hope to incorporate it into future travels although it may be a bit more challenging with a stubborn 23 year old male who is not exactly open to new ideas (e.g., yoga). Our recent travels have thus far tried to force ourselves into the new time zone although this recent trip wasn't as big of a change which I think is what resulted in it taking longer for the seizure to occur - along with an early wake-up call on that day and jam-packed schedule preceding the seizure. I had already started wondering if a more relaxed schedule for future travels would be beneficial and your approach has convinced me that it would - although it may take some trial-and-error. We have been trying to convince him to download an app that provides a seizure alert to designated contacts but he has balked at that thus far (I think it's a combination of the cost and an invasion of privacy/infringement on his independence).

I'd be interested to hear from you after your trip to Japan or other similarly long adventures. Be well!

Hi @robertm1215
Thank you for your comments.
I was diagnosed with temporal lobe epilepsy at the age of 48 in early 2019, but my seizures started well before that when I was a teenager. However, my seizures were mild and rare (3 or 4 times a year). I just stayed absent for a few seconds and returned back to life as if nothing had happened. So, I have lived with my epilepsy without knowing it for decades. But after a burnout in 2017, my epilepsy evolved and started to show its face more clearly. Seizures became stronger, and more frequent with a recovery that was not immediate anymore.
My seizures are usually partial/focal ones (coming from one part of the brain), both simple (when awareness is not lost) and complex (loss of awareness), but with no convulsion. Here is a link with a good explanation of different types of seizures, in case you are interested: https://www.epilepsy.com/what-is-epilepsy/seizure-types
You asked me about medication. I have tried 5 different anti-convulsants, but they did not work well for me. After those painful experiences with different medications, it was discovered I had mesial sclerosis on my hippocampus (left side) and drug-resistant epilepsy (30% of people with epilepsy have what is called refractory or drug-resistant epilepsy). Since 2021, I have been treating my epilepsy with Epidiolex (medical cannabis), diets, yoga, and management of my triggers. My seizures have reduced greatly and I have a good life again. Being treated by an epileptologist instead of a neurologist made a great difference. I recommend it! What also helped me a lot was the Andrews-Reiter approach, learning about my triggers and how to manage them better. Here is a link, if it interests you: https://www.amazon.com/Taking-Control-Your-Seizures-Treatments/dp/019933501X. Last but not least, accepting my epilepsy and my new limits was key to having a good life again. My neuropsychologist has been of amazing support in this respect. I was also some kind of stubborn, willing to continue with my life as it once was.
Wishing you and your son all the best! And stay here with us. I have learned so much with so many here in this group.
Chris (@santosha)

Hi @robertm1215, good morning
Taking Nayzilam on your trips is a good alternative in case of son's seizures. Reading your post to Lisa, I recalled I have used such medication in the past (mine was made of medical cannabis) and it worked pretty well. It interrupted my seizures immediately and limited the effects after the seizure. I totally forgot about it and I thank you for reminding me of this medication. I will ask my current doctor to prescribe it to me again, as it can bring a feeling of security in case a seizure happens.
Have a good day!
Chris (@santosha)