Epilepsy Foundation

Hi All My Friends Here -- My son just texted me saying he has had 12 myoclonic seizures while at a resort located at 7,000 ft. He felt weird as soon as he got there. I attributed this to adaptation to the thinner air. Yet, he complained during the vacation that he kept feeling ill and ultimately he has now reported 12 myoclonic seizures, some of which are "big ones Mom." I've checked and there is some reporting on altitude-related seizures but most of them have to do with climbing Mt. Everest or something really high like that. If you've been following my posts here you probably think I'm off my rocker by now with worry. I just can't believe that he is having break-through seizures after having his medication raised twice before his trip, and now he is even breaking through that. We're scheduled for an EEG, but I'm really worried. Does this happen? I mean the altitude issue, as well as the break-through seizures? I'm sure he needs a med change by now, but I'm then concerned about the side effects of that. He was doing so well on Lamictal. He has learning disabilities and the last thing we need is to be a drowsy, doped-up kid who has trouble in school anyway. Thanks for letting me vent guys. I'm sorry to waste so much cyberspace.

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We have a cabin in Big Bear. It is at 6500 ft. Tyler seizes much more in the altitude. I think the thinner air reduces the amount of oxygen to the brain and it brings on seizures. Once we are home, Tyler returns to his baseline.
My teenage son has epilepsy. We live in Northern Calif. and he traveled to Denver a couple of summers ago to go to the Outward Bound course for young people with epilepsy (great program by the way). As soon as we got to Denver he started complaining of feeling ill with his stomach not feeling quite right. He went to the course anyway. They took them up to Leadville and then on up backpacking in the Rockie Mountains. My son subsequently suffered two tonic/clonic seizures in one day which had never happened before. They had to take him back down to base camp for fear the altitude was making his seizures worse. Also, one other person on that trip had a seizure when they hadn't had a seizure in over a year. My son was fine, it was a one time occurance that this happened and it was over a year ago - he's had seizures since then but not two in one day.

Afterwards, I was talking to the NP at his nuro's office at Stanford and come to find out she was from the Denver area and was aware about altitude being a trigger for neurological conditions. In my opinion, there is definately something to it. My son has flown with me many times and has not had any problems with it, I think that is from the cabins being presurized.

Have you checked with his neuro about these break through seizures? Don't worry about venting especially when your child is away from you and having seizure activity . . . . that is difficult!
When we went to Colorado a couple years ago, we were warned to stay to the lower elevations, and to still watch for seizures. Altitude does play a part in seizures. Planes are less of a worry, since the cabins are pressurized for the most part, but can trigger some people.

Prayers that your son can get to baseline once he is at home.
I thought so! I just knew it. I'm going to call the neuro on Monday to update him on my son's latest seizure cluster, and to mention that I think the altitude had a hand in it. From all the replies here, there is definitely a connection to at least the oxygen change. Sounds like enough research data for the doctor's to study more indepth. My son is back in our hometown today and I haven't heard from him whether or not the twitches have continued. He'll be back with me on Christmas so I'm hoping he'll have good news.

Alyssasmom said:
When we went to Colorado a couple years ago, we were warned to stay to the lower elevations, and to still watch for seizures. Altitude does play a part in seizures. Planes are less of a worry, since the cabins are pressurized for the most part, but can trigger some people.

Prayers that your son can get to baseline once he is at home.
I agree! Like I told Alyssa's mom, I think there are enough mom's and E-sufferers to document this phenomenon. From now on, I'll definitely try to warn his dad about this. That's another whole story. At least my son is aware of it, and can try to protect himself by remaining with another person at all times in case he has a T-C seizure. Thanks for your note!

Tamie said:
We have a cabin in Big Bear. It is at 6500 ft. Tyler seizes much more in the altitude. I think the thinner air reduces the amount of oxygen to the brain and it brings on seizures. Once we are home, Tyler returns to his baseline.
according to journal High Altitude Med Biology, high altitudes may trigger seizures in a seizure-prone person.
Cecille, Librarian at the Epilepsy Foundation, cjach@efa.org
Just writing a review on High Altitude Seizures and came across this older post. I am an epileptologist at Denver Health and Hospitals in Colorado and have been following this phenomenon since my fellowship training in 2005. We examined new onset seizures in lowland vacationers to Summit County, Colorado (Key Stone, Breck, Arapahoe Basin) with base elevation between 8000-9000 feet. We looked at Summit County Emergency Room admissions and found a small group of patients that I reported in a NeuroRehabilitation article earlier this year. I do believe this is real, and am curious about collecting more cases through patient groups and blogs. As you can imagine, ED visits selected out only GTCs, and my bet is that other seizure types are being exacerbated as well (absence, complex partial, myoclonus in the setting of JME, etc...). If you would like to discuss your case further or discuss some recommendations you can email me at edward.maa@ucdenver.edu. Good luck!
Yes, even as a child, when we vacationed, I cannot go any higher than a specific altitude - but what my parents did not know was it triggered seizures, but yet, on my end - I did not know how to explain it all, for I loved mountains - always dreamed of going higher and higher.

The other problem was flying - while in specific planes (old planes) while I did not fly alone even though I had piloted them (they were dual pilot, so one could fly when other was unable to) - at specific altitudes; I was gone; not a problem in pressurized cabins.

I never knew I had seized until years into the future (before online came to being) when my Neurologist told me about it .. and to say I always wanted to climb Mt. Everest? To Ski at Lake Tahoe? You can forget about me visiting Denver, Colorado or otherwise I would be ending up in their Hospital.

:-/
I wouldn't write off trips to Denver or other highly populated places! If you are well controlled with medications it would be reasonable to visit. Contact your neurologist/epileptologist ahead of time, let them know your concern and see if there are other safety measures to take (ativan/valium/extra medications/diamox/topamax... would all be reasonable options to protect yourself at altitude). Remote high altitude areas, scuba diving, and high altitude travel without acclimitazation would not be recommended, but there are plenty of adventures that fall short of that extreme.




Southie ~ Sharon said:
Yes, even as a child, when we vacationed, I cannot go any higher than a specific altitude - but what my parents did not know was it triggered seizures, but yet, on my end - I did not know how to explain it all, for I loved mountains - always dreamed of going higher and higher.

The other problem was flying - while in specific planes (old planes) while I did not fly alone even though I had piloted them (they were dual pilot, so one could fly when other was unable to) - at specific altitudes; I was gone; not a problem in pressurized cabins.

I never knew I had seized until years into the future (before online came to being) when my Neurologist told me about it .. and to say I always wanted to climb Mt. Everest? To Ski at Lake Tahoe? You can forget about me visiting Denver, Colorado or otherwise I would be ending up in their Hospital.

:-/
Well I for one am glad you posted here and will contact you when I get a few free seconds. I had asked this many times over....But I too asked my child's epileptologist about altitude/flying and I guess there are no hard facts in your 'medical books' that you learn-but he conceded he often wondered himself and does not see why it is impossible.

I am not sure if this is a coincidence or not....but we lived out of the US (Caribbean) until about 2 years ago. Our daughter developled epilepsy, and afer a 2 hours status, and since it was undiagnosed and misdiagnosed, we came back to the US to get things checked out.... She is well controlled...going 14 months without a seizure, and 11 months none. The strange thing is, she has never had one in the NE US, yet every time we take her back 'home' to the island, she has one within a week of us getting there. Is it the flying? Something on the island???

Altitude (plane ride) as well as swinging on a swing are 2 things I to this day wonder if it is a trigger or not. However, she never has this problelm after flying from there to the US-so I am not sure of the connection if any.

The island has mountains, (altitude/elevattion) beach, etc and being remote makes me worry so I stay near to city/hospital in case. We have diastat, since her Complex partials seem to need intervention if she gets one..She is on keppra.... She loves the mountains though....

What would you consider high altitude or elevation for this to affect someone's threshhold? (Just curious).

THanks for looking into this...Although I hope someday they realize this has zero to do with it....my daughter is an adventurist at heart already at 6 and I would hate for her to have limits in her life:) Please find some answers;)
Just a little note - for our dd (now 5yrs) I think it was the g-forces that got her on take-off & triggered what was either a long absence sz or a short CP (about 5-10secs). Not a normal type for her, she usually has GTC or CPs that develop into GTC. She was looking at a book at the time. On the return flight, we made sure to keep her really engaged in conversation, etc & she was fine as far as I could tell. It was the only time she has flown (big aircraft).
I've been watching this post for awhile and though I would add. My husband is a commercial pilot and we also have our own small airplane. When we fly privately and are at an unpressurized altitude of more than about 8500 ft my son has tons of activity for the remainder of the day. No actual events but he has constant spike and wave and it is obvious that is more activated from his delayed speech and cognitive processing as well as squirrelly behavior. When we stay lower - there is a definite improvement. As a side note - large commercial aircraft are pressurized to around 5000 to 6000 ft. Therefore if you live at sea level and hop a plane it is still a big difference.

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