Anyone out there ride and have epilepsy?
My daughter has had Epilepsy since she was 13. We have horses and she does ride. Helmet required. Just wondered if anyone else has it and rides and if there is anything special they do. She has had a few seizures while riding but never fallen off.
I have two friends that ride with epilepsy. One of them is a pro. The other just rides for fun. Neither do anything special with regard to fall preparation other than a helmet. The big issue for both is meds to control it. As a by-stander, it is very good to know a) that they have epilepsy and b) if and when their meds are being modified just as a contingent “heads up” if there’s going to be trouble. And plus, when they couldn’t drive, the more people aware that can offer a lift, the better. :winkgrin:
One of my co-workers has epilepsy and didn’t want anyone in the office to know. She had a massive seizure one afternoon while walking into another co-worker’s office. Turns out, she was on new meds and had been having trouble. None of us knew though, so when she went from normal/happy/chatty to suddenly collapsing with a primal, blood-curling scream, if freaked everyone out. She was embarrassed and more than just a little annoyed at having 911 show up. Had anyone known in advance what to expect, it wouldn’t have been such a big ordeal. That was a couple years ago, and on the bright side, the entire office now knows, many more people now know the proper response to a seizure, and she’s (mostly) gotten over the embarrassment aspect of having her co-workers know.
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Hello Diane:
I have epilepsy and have since I was about your daughter’s age. I always rode with a helmet and now, so do my daughters. I don’t have much to add, but you are free to PM me if you’d like. I have had epilepsy for about 30 years now and mine is a happy story.
Frances
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Frances thank you for such a good reply. It really did help me too.
Liza Towell Boyd is very public about her riding with epilepsy. So it can be done, and done well!
[I just posted this on the “other” epilepsy thread. It seems to fit here, too:]
Hi there.
I have never been over to this Forum because I don’t consider myself disabled, although I have had epilepsy for 24 years.
To me, epilepsy isn’t a disability – It’s a condition.
I have ridden and shown everywhere from California to Devon to Madison Square Garden to WEF.
Twice I have had seizures at shows (I only have grand mal); one time I was standing in the barn aisle, the other time I was standing on a mounting block, about to get on my horse.
It has never occurred to me to stop riding. Like the OP, I am well controlled and only have a seizure about every 6 - 8 years.
Perhaps I am not concerned because I have never had a seizure when I was really concentrating and my brain was engaged and thinking. Ergo (I rationalize) I will never have a seizure on a horse because I am “alive” when jumping and competing. My mind is focused and I already have enough neurons firing that there is no “room” for those aberrant and pesky ones to start a riot. 
Besides, what’s the worst that can happen? You fall off. I have fallen off hundreds of times (feels like it anyway) in the 50 years I have been riding. At least if I’m “out” when I go off, I won’t be awake to know that sinking feeling of “Oh Shit!”. 
I am only partly being blase (accent on the final e) about this. As I said, I have always refused to consider myself “different” from any one else because I have seizures. I refuse to let it define my life. I live life and do what I want to do; I will not stop doing anything that does not involve potential injury to others if I should have a seizure. – Actually I take that back – When allowed to by DMV, I drive. I know my limitations and I do not drive tired or distracted. When I drive I am constantly focusing on things around me, carrying on an internal dialogue with myself to keep myself alert; to prevent going into a “road coma”.
Because of that, I feel safer than 99% of the drivers on the road. I have never had an accident or gotten a ticket because I am hyper focused when I drive.
PS: Having epilepsy should have nothing to do with wearing a helmet. Everyone I know would not consider getting on without one. Anyone can fall off at anytime. That is not just our prerogative.
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I am interested in what you write because my brother has epilepsy also.
Although coming from a horse riding family he never really learned to ride as a child because he had a traumatic brain tumour regime. Now as an adult he still has seizures monthly but would also like to ride. He also only has tonic/clonic seizures.
I can’t think of any reason he shouldn’t ride. Especially if he has an aura so he has warning of when the seizure is coming.
He can let people put him in a plastic bubble or he can live life on his own terms.
Since he has no riding experience and there fore, no muscle memory, perhaps he should start on a small horse (15h’ish) so if he topples off, he won’t have as far to fall.
But we all fall off. So what’s the big deal about it? As long as the horse doesn’t take off and leave him stranded, all he has to do is get back on.
I think that everyone has gotten so overprotective nowadays that it has become a national passtime. You can’t live in fear of what might happen. And no one can protect himself from every contingency.
As the ad says: Just Do It!
I know I am reviving an old thread here, but as the mother of a daughter with epilepsy, so much goes into the decision of whether to let other people know she has it. The stigma is real and it is major. My daughter has been denied MANY opportunities that were 100% hers before she shared her epilepsy diagnosis. In high school, she was told by a teacher that her epilepsy was her fault and that it was a punishment for something she had done. Yes, this was in 2019 - the ignorance is insidious. As a collegiate athlete, the difficulties continue. She even had a club coach call college coaches to blackball her when she was going through recruiting. This coach had witnessed her first convulsive seizure and waged a campaign against my daughter afterward.
While it’s easy to say that people with epilepsy should alert others around them…it truly is not that simple. The vast majority of people still have an unnatural fear of epilepsy and associate it with a lack of dependability and an “eek factor.” In fact, I can’t think of a single incidence when it has benefited my daughter to share that she has epilepsy. That nugget of information has been the death of so many potentially great opportunities for her.
I have not been on these boards for over a decade, but I was once an OG here. Landed back here today because my daughter has just joined the equestrian club at her university and she is afraid of epilepsy pulling the rug out from under her, as it always does when coaches and teammates know. I was hoping Us Equestrians might have a more open-minded stance than the world at large, but from the posts I have read so far, well…heavy sigh.
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I have epilepsy; diagnosed when I was eighteen so I’ve “had” it for twenty years. For the most part, my seizures are well controlled unless of a serious trigger. I ride, but I’m cautious and encourage other people with serious health conditions to be careful as well. I ride with a helmet and a safety vest, and I don’t ride alone. I’ve also worked with my new horse to handle me “falling” so that she doesn’t panic.
I also have an autoimmune disease, which has been a major issue.
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Probably 20 years ago now, I was riding in a group lesson and a girl fell off and was having a seizure. Unbeknownst to us, she had epilepsy and had stopped taking her medicine (she was young) because she thought she was fine. A lot of us (there were over 10 of us in a large ring) were afraid that the seizure had happened due to the trauma she incurred from falling off the horse, or that the horse had stepped on her head resulting in the seizure. It was actually a relief when she told everyone the next day she had epilepsy. She continued to ride in the program until she lost interest in it.
I think it is important to note that if she does have a conversation with her coach, to mention if her seizures are well controlled and if she can feel them coming on. The girl I knew could always feel them, so she just wouldn’t ride if she had a lesson scheduled.
