'epilepsy' or 'seizure disorder' is such a broad family of conditions, literally different for everyone. What my situation is may not be the same as yours.
Track your seizures (time of day, duration, description, situation in which it occurred) and keep log of it. If you lose consciousness, space out, or forget them, have a friend/sig other track them. Knowing yourself is so important, especially if you are newly diagnosed.
Take your meds on time and as prescribed.
Most importantly, talk to your doc. It is much better to play things safe than have a seizure in the plane, in freefall, or under canopy, where not only your own safety may be affected, but other people as well.
Jul 11, 2005, 6:40 PM
Post #3 of 14
Re: [peregrinerose] jumpers with epilepsy--
[In reply to]
Yes-- so far I've been doing all of that, been seizure free for more than three weeks now, which is good considering I was having 14-17 per day before meds.
I've only lost consciousness during 2 seizures, both the same day (in the hospital), the rest I remain lucid throughout. They usually only last 10 seconds or so, and before they stopped, I'd practice emergency procedure during the seizure...
I'd love to hear more about how you've dealt with jumping--did you have epilepsy before you began or is it a recent piece of baggage? It's a brand new diagnosis for me, and, well--it sucks. Very hard to go to the dz and hear my gear call me to put it on. Fortunately, the folks at my dz are some of the best people on the planet and it makes it so much better!
I'll be back in the air before too long, but in the meantime, I'll be alphabetizing my sock drawer! cheers, pope
(This post was edited by pope on Jul 11, 2005, 6:41 PM)
Three weeks seizure free is a very very very short period of time. Your body does adapt to meds with time, and it is very possible to have another seizure as your body adapts.
I don't have epilepsy, I have a seizure disorder. They are different, though I don't really know all the logistics of why
I started jumping after having a seizure disorder. Mine were always very mild, always called them 'deja vu-y things', it's the best I can describe it. I am completely lucid, have never lost consciousness or had any altered behavior of any kind. It is just this freaky perceptual thing in my head. I've had about 3 seizures in the past year, all were when I forgot my meds for a dose. I will not jump within a couple days of missing a dose of meds. Even though I'm sure that I could function well in a jump with a seizure, I'm not willing to take that chance with myself or anyone else.
Hope you are back in the air soon!!! Keep me posted on how things are going with you.
It is still far too short a period of time to know anything. Meds may work for a while then your body adapts to it, therapeutic levels may need to be adjusted or new meds started. Whether 1 seizure a year or 100 a week, 3 weeks is too short a time to truly know much of anything definitively and know whether or not another seizure will occur.
After a bump on the head it took years before the docs let me stop taking dilantin. They'd diagnosed me as probable and were covering their bets.
Fear of a life on medication got me up and going again... that and a pet dog that i had to exercise every day. After countless tests and heaps of different docs I was set loose . I had only suffered seizures shortly after my injuries due to extra dural haematoma. Since then I've hardly even had a head ache bar some minor exceptions.
I feel so lucky and humbled by the circs of people that post here. You guys are fantastic ....and deserve to have your dreams come true. All power to you .. may the gods of healing shine on you all.
Ask Dr. Freefall (Patrick Weldon)...he's my local neurologist, how cool is that?!
I began having simple partial seizures in 1996. No biggie, they put me on meds, I started skydiving in 1997 when I turned 16, and even had one in freefall. I didn't lose consciousness BACK THEN...it was a solo jump, so I just watched my altimeter until pull time. Made 280 jumps between then and 2003.
Made 13 BASE jumps from 2001-2002.
August 2003...I began having LOTS of complex partial seizures...10 or so a day. Changed my meds, no help. I went to Johns Hopkins for extensive testing, including two brain surgeries in January 2004.
February 2004...right temporal lobectomy (removed the part of my brain where the seizures were coming from). Still had an average of one seizure a month, but they were slowing down. That August, I made a hop 'n pop, thinking I had resumed my skydiving career. Seizures got worse and more frequent.
May 2005, another right temporal lobectomy. I'm still having seizures, averaging 1-2 per month. Failed medicines, failed surgeries...I'd give my left EYE to make a skydive. I'm back in college, and I do drive. But at least I can pull over if I'm driving and feel a seizure coming on. Can't do that jumping.
Life isn't the same without skydiving and BASE. It feels like a meaningless life sometimes. Hope your seizures stop, and I hope you can deal w/ not jumping better than me. Good luck.
First, let me say that I am not ashamed of my epilepsy, and don't mind telling people - under my own conditions. The reason I am using an alt to post in this thread is that I haven't told all the people at my home DZ yet, and this is not the way I want them to find out. I prefer that people know me before I tell them about my condition, because I am terrified of prejudice - been there, done that, and I can tell you it is very tough to be known as "the guy with epilepsy". People seem to expect you to fall down shaking and kicking any minute, and subconciously act accordingly towards you, which is plain annoying and very frustrating.
Yet I feel it would be for the best if I shared my story, so others can avoid making the same mistakes, and won't have to find out everything on their own, as I had to. (As to the "no alts" policy, I asked permission first )
So here goes. I have thought long and hard before even considering making my first jump. That's why this post will be huge, I'll tell you the entire story in one go:
I have read a lot of research articles about skydiving and stress, and about epilepsy and a certain neurotransmitter which also happens to mediate stress. As far as I can tell, this neurotransmitter, called NGF, will be upregulated during stressful events such as skydiving, which is a generally accepted model for inducing stress upon healthy volunteers. NGF was also found to be increased after epileptic seizures, but noone has ever addressed the question whether a seizure is stressful to the patient, so that his NGF-levels are upregulated or that upregulation of NGF induces seizures. So, do we have a chicken or an egg in NGF?
All articles conclude with sentences along the lines of "it is felt that" "common sense dictates" "patients should" not participate in extreme sports such as skydiving, but all fail to say why. They just dont know what epilepsy is, and what happens to you during and before a seizure. In addition, everyone is different and has their own triggers.
I happen to be involved in research myself, and a collegue of mine was looking at physical stressors in healthy volunteers, and measured their responses by looking at a stress hormone (cortizol),as well as telemetric output. I signed up to help her out (this was sometime before I wanted to go skydiving) and I turned out to be very stress-resistant. The physical stress she subjugated us to was to dip our arm for three minutes in ice water. As we were told this before the research started, you could see that most HV had increased stress levels during the ice water test, and then went back to a level lower than the base measurement because they knew the worst was over. My results on the other hand, showed hardly any reaction to the ice water, and then my response went to a level lower than base, as I too knew the worst was over.
That being said, I have never, ever had a seizure under stress. In fact, it is much the opposite. Many seizures were when I was nearly asleep, at the point where you have given up trying to stay awake, but are still concious. One seizure was in primary school when listening to a kid mumbling about some subject he had to present, and another was when playing a board game with my uncle. Nor are my seizures triggered by low oxygen levels or cold, as I routinely have to work with samples which are kept under liquid nitrogen. This means I spend hours on end bent over a container sniffing nitrogen. Also, I have no problems skiing in the highest resorts in the Alps.
I still take meds, to be specific I swallow 1000 mg of depakin daily, and I am not willing to quit taking them. As I said I have been seizure free for four years now, but that would have been over fifteen had I not grown careless during my nine-month stay in another country. I didn't have a seizure for a long time, but several months while off my meds I was falling asleep in front of the TV, during a movie I really wanted to see. I tried to stay awake as hard as I could, and hey presto! Fortunately this happened in my parents house, and I "woke up" wondering what all the fuss was about.
So there is no aura as such, but I feel that if I do not go skydiving when hung over (yes I am allowed alcohol), ill, or exhausted there should be no additional risk. But that goes for everyone.
I have been taking my meds ever since that last seizure, and the way I figure I am doing just fine with them, so why take the risk of stopping? If I did, and another seizure came on, my life would have to change radically. As a lab technician, I routinely work not only with liquid nitrogen, but also with all kinds of other hazardous liquids, solids and gases, so I would have to find an entirely different job. And there would be no more wintersports for me, and I could forget about that trip to Africa I was dreaming of.
All this information is what I still can remember looking up BEFORE even seeing a doctor, or asking a DZ whethet they were wiling to accept me. Anyway, I judged the risk was one I was willing to take.
So I went and emailed a DZ about my condition, and how did they feel about it. The response was heartening: If I'd make it through my medical examination, there was no problem taking me on as a student. So I went to see a sports doctor. He listened to my story with a big grin on his face, I think I made a good impression on him by having looked into the matter on my own. He said that the days when epilepsy patients were expected to sit in a wheelchair wearing a straightjacket and a sack over their heads were over; now, if the doctors were not sure whether something was allowed or not, and could not offer "valid" advice, it was up to the patient themselves to make a risk assesment. And since he saw I had done so, he approved me for skydiving, and I signed up for the very first course. Reasoning that it was safest, and in order to build up height, jumps and skills more graduallly, I went static-line. After all, 3500-5000 ft AGL in my country is no higher than the skiing resorts I go to.
It was a risk, sure, but a carefully calculated one, and I felt I'd be no more at risk than any other student. That also goes for causing risk for fellow jumpers. I have heard the argument that "a life of disappointments is better than a thrilling death", but with all due respect to the well meaning individuals who have said so, that is bull. Only one person can evaluate the impact on the quality of life of the epilepsy patient correctly, and that is the patient in question themselves.
Anyway, my contact at the DZ obviously wasn't going to remember my name from all the emails and questions he receives, and because I thought that I had already done my duty, it so happened that not a single instructor knew of my special circumstances.
I found this out by accident several weeks ago, and a dozen freefalls later. I immediately grounded myself until I had a chance to speak with the chief instructor. When I got hold of him after three weeks of looking upwards being very frustrated wuth all those damned blue skies, he was very supportive. He asked me what I sought to accomplish with our little conversation, as he felt that the circumstances were clear, and in his opinion there weren't any obstacles to my skydiving. I said that I didn't feel happy going up under his responsibility if he didn't know all the facts, and just wanted to put down all my cards on the table. He asked some further questions, and the day after, at the instructor meeting, he said that "an anonymous person" wanted to skydive, and how did the others feel about it. They too felt it shouldn't be a problem, provided that said person got a special declaration from the Dutch variant of the USPA (called the KNVVL).
I timidly asked the chief-instructor if I could keep on jumping in the meantime, and he said yes, provided that I got that declaration sorted ASAP. So I called the KNVVL, and there I was met with a lot less understanding. Finally they had me call the president of the medical committee, and she too was very.. detached (i think that's the correct translation). She didn't ask about anything I have said above, she just bluntly stated that mind-influencing meds such as anti-epileptics are not allowed in the air, period. But she'd see what could be done, and advised it would probably take a few days before she'd get back to me.
When she failed to do so, I called the KNVvL again, to ask for her email, so I could send her what I have written above so that she too would have all the facts, as well as a subtle reminder that I was waiting for her response. Which I haven't been doing from the ground, by the way. But it turned out that I was referred to the wrong contact, she had nothing to do with skydiving but thought I was looking to drive cessnas or glider aircraft. The person who answered my call apologised profusely, but hey these things happen.
I finally got the right phone number, and I called my new contact. He told me to cherish my medical declaration; as I already had one there were no practical problems to my continuing to jump. He advised me to go to the same doctor when my declaration was about to expire, as some other doctors might not be as understanding. He also said that the only trouble he could foresee was that my insurance company was going to refuse to pay in the event of an acident, epilepsy-related or not. He was afraid they would try to say that I had misled the doctor who approved me for skydiving by concealing my epilepsy. Alternatively they could argue that a normal sports doctor is not a neurologist, and therefore not qualified to say that my type of epilepsy is not an obstacle in skydiving.
So he told me to get a signed declaration from that doctor in which he confirms that he knew of my epilepsy before he approved me for skydiving, and to take that to a neurologist who was to sign something similar. This way I would be fully covered for "legal repercussions". Because it's very hard to prove that your accident was not because of a seizure, especially from hospital - or worse.
Innocent until proven otherwise apparently only applies to criminals.
But there are absolutely no practical obstacles to my skydiving career, and once again it is proven that there are much worse things than epilepsy.
But other patients who want to jump I would advise to 1) make a careful risk assesment of whether you really really want to jump
2) evaluate your epilepsy, if necessary with your neurologist. What are your triggers, how much medication do you take, with which side effects etc. How long have you been seizure free?
3)tell the person who is going to approve you for skydiving, and show them you know what you're talking about.
4)Get a statement from your neurologist to cover your.. backside.
5) Tell your family you want to skydive - they have a right to know, and this way you'll avoid nasty surprises for them should you get injured in any way, seizure or no.
6) And most importantly, tell your instructors face to face PRIOR to signing up - they'll respect you for it, and you'll avoid damaging the trust they'll have in you should they find out by accident.
You'll also avoid losing a lot of sleep and long periods of worry whether you'll be allowed to continue jumping..
On 6/28/07 I was diagnosed with Post Traumatic Seizure Disorder. My neuro said it was Epilepsy. The cause was multiple head trauma with scarring on the brain. My condition was confirmed by a 2nd neuro about a week later. My most recent seizure was a staring episode on 4/29/07. I also have Complex Partial seizure. I am currently on 800mg of Tegretol. So far I have not had a seizure since 4/29. I am not allowed to drive until I am 6 months seizure free. I am also dealing with Complex migraines that are very difficult to control. I am in some level of pain from mild to severe 24/7. I have lost consciousness well over 100 times due to severe head pain. My prognosis is that both conditions are permanent. I'm crossing my fingers that my seizures do not break through my medication. If all medication fails, I will have to undergo surgery to remove the area where the seizures are occuring. At this point, I cannot see myself ever skydiving again mostly due to the chronic pain and the medication I have to take to control it.
My diagnosis is so new that I have yet to really educate myself. Psychologically, I have not been able to process any of it yet.
I am encouraged though to read the posts here and how you folks have been able to manage your seizures. For the first time, I'm imagining getting back in the sky somehow. The chronic head pain is a problem though.
Thanks for your posts on this topic. They actually have given me a sliver of encouragement.
First, let me say that I am not ashamed of my epilepsy, and don't mind telling people - under my own conditions.
This is me. It's a year later now, and I have found the vast majority of skydivers surprisingly tolerant of people with medical issues.
As to the few people who are scared of epilepsy patients, and say stuff like
However, if the skydiver had disclosed [their epilepsy] to him, he would have had a _choice_ as to make the jump with the other diver. He may have, he may not have; but he would have been informed.
I have news for you. The choice is actually mine, not theirs, since these are not the people who I wish to jump, or indeed, associate with anyway. So there should be no moral dilemma for them in how to turn me away firmly but politely. So you see, in a way i am just as bigoted as they are. Life is all about balance.
edited for spelling
(This post was edited by Baksteen on Nov 28, 2007, 6:16 AM)
Lemmie just say that I didn't read the entire thread, just a few posts here and there.
I agree there should be no shame in epilepsy whatsoever. And that epileptics (please don't go politically correct on me, I've heard it) should have a right to participate in whatever they feel safe doing, even if it might not actually be so. HOWEVER it is something completely different to endanger another human being or even make him or her fear for their lives or safety (within reason). People DO need to be given the choice. They might be total dicks for not listening to reason, but at least they have a choice.
I feel, always give people a choice when their safety is an issue. Doesn't mean you have to like what they choose.
You are lucky to be able to manage your own risk :-)
I haven't been able to find a doctor to sign me off (I have about 3 seizures a year - 99% of which are pretty much predictable and, like you, when I am tired/just woken up/late at night). You are very very lucky to have found one so understanding. Basically if someone is going to sign a form saying they are responsible for our lives they have to be an expert at epilepsy, at skydiving, and at knowing ourselves! I always thought the only person who could (and indeed should) sign such a form would be me! so thats what I did....but now I'm not allowed anymore and it has to be a doctor and of course they don't know me and don't "get" skydiving.
I miss skydiving a lot and miss my friends, but am so happy to have had the years I did, albeit that there was a bit of uncomfortable white-lying going on for me to pull it off.
But there is another thing all jumpers need to consider. This sport attracts all kinds of wonderful people. Even people who have chemical dependency issues. I've seen people stay up late into the night drinking, smoking various substances, taking a multitude of mind-altering substances. The next morning they are manifesting on the same loads as someone who could have epilepsy and they aren't informing anyone of what they did the night before.
I would rather jump with an epileptic who has his/her condition under control through medication. They need to be seizure free under the medication for at least a year in my opinion, but I'm no doctor. At least then I'm aware that a potential problem is under a level of control. I've been in the sport for about 10 years, and I've read incident reports where chemical abuse was a factor in the incident. Not once have I read that epilepsy was.
I've also personally been witness to an incident where illegal substances were a factor. The person got off lucky.
So what can you do?
The BSR's state: 1. All persons engaging in skydiving must:
a. Carry a valid Class 1, 2, or 3 Federal Aviation Administration Medical Certificate; OR
b. Carry a certificate of physical fitness for skydiving from a registered physician; OR
c. Have completed the USPA recommended medical statement.
Get the FAA to approve you for a medical certificate.
2. Get a doctor to sign you off as being able to skydive. Give this document to your local DZ S&TA. If you do not feel comfortable with that and fear reprisal from biased fellow skydivers, give this document to your emergency contact listed with the DZ. That way, should anything horrible happen, you have your bases covered and liability should not be an issue.
Long story short: If you have a controlled disability, and you can legally prove it, you are legally safe to skydive.
Someone under the influence of illegal substances is NEVER safe to skydive.
Just be smart about the whole issue. If you have regular seizures even while on medication, perhaps it's time to give up what you love so much and search for another hobby that makes you feel just as good. And be glad that you had a chance to at least make 1 skydive in your life!