Riding/Coping with Epilepsy

[AliCat518]

I noticed there was another recent epilepsy thread, but I didnt want to hijack!

I have had epilepsy since I was 13. Im now 23, and had not had a seizure in 8 years. About a week ago, I got the “seizure feeling” and blacked out for (what I believe was) a few seconds. Freaked me out big time. Chatted with doctor, he said it sounds like a seizure, just not the grand mal’s that I used to have.

Needless to say, no driving for 6 months.
While on the phone with Dr, I was so frazzled, I forgot to ask about riding. Until I can chat with him again, my dad has made me promise not to ride (which has been terrible!)

So here are my questions:
Other than never riding alone and always wearing a helmet, any tips for riding safely?

How in the world do I NOT GO CRAZY without a drivers license?! It’s been a week and im already miserable(the increase in meds probably isnt helping my mood…)

Any help would be great. Thanks!

[CobJockey]

My episodes have never been confirmed as seizures, but my athletic trainer has her suspicions that they are a mild type of seizure after seeing one. I have been prone to blacking out usually in response to pain, or warming up after getting really cold, since I was 8 and now I am 23 also. I’ve fully blacked out maybe 5-10 times and come close many more.

I’m not sure on the specifics of yours, but as far as riding safety for me goes:

1. I first identified when I was most likely to black out (after my fingers/toes turn white and then warm up, often after I get off the horse and start moving around after riding in winter) and made sure to take precautions to avoid those situations (hand and toe warmers, Smartwool everything, etc). I have a good 10-15 seconds of my “warning feeling” which is enough for me to get off the horse and hand it to someone else. Do you have a blackout log? Are there any common factors?

2. I can also fight off the blackouts to a certain extent using a couple different techniques, and immediately consuming something loaded with sugar, like Gatorade, also seems to help, though it is definitely not blood sugar related.

3. I make absolutely certain my trainers, barn mates and other barn people all know what happens and what they should do if they see me exhibiting warning signs/go down. I think that’s the most important part. I failed to tell a new trainer once and really freaked her out when I got off and doubled over in the middle of a lesson.

And for a laugh, you should hear about the time I came to in the arms of a big, unfamiliar, African American man in a parking lot on Christmas Eve in Memphis, TN, five hours from home. Now THAT is a blackout story! :lol:

[Lord_Helpus]

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 no license is a bitch. Sorry about that. I have hired people who need extra income and/or are bored staying home to chauffeur me around. I have met some nice people that way.

[AliCat518]

Do you have a blackout log? Are there any common factors?

No blackout log, because it very rarely happens. The common factors/triggers have been flashing lights, sleep deprivation, and forgetting to take meds(wont make that mistake again!)

2. I can also fight off the blackouts to a certain extent using a couple different techniques, and immediately consuming something loaded with sugar, like Gatorade, also seems to help, though it is definitely not blood sugar related.

I also feel like I can fight them off. I believe thats what happened during this past episode. It felt like it was going to be a grand mal seizure, but I “focused” and fought it off. Hard to explain!

And for a laugh, you should hear about the time I came to in the arms of a big, unfamiliar, African American man in a parking lot on Christmas Eve in Memphis, TN, five hours from home. Now THAT is a blackout story! :lol:[/QUOTE]

Haha that sounds like the best blackout story of all time. Must have been a little scary at the time, but glad youre okay and can laugh about it now!

[AliCat518]

Lord Helpus-- I too think that when you are focused on something, it helps to fight off a seizure or black out. I try to explain this to people, and no one can quite understand it (unless it has happened to them!) You explained it in a great way!

I think I will “hire” someone to drive me around. Im a poor college student, but since im not paying for gas anymore , I can probably afford it! (hello, silver lining! Gas will apparently go up to 5.00 soon! Glad ill be missing out on that!! :D)

I love your outlook, and reading these replies has already made me feel much better. Thanks!