Issues with riding and uncontrolled seizures

[system]

I was actually recommended to come over here on account of riding and my seizure activity. And since I didn’t want to make a new topic…

My seizure control isn’t very good, mainly because of what types of seizures I have. Thankfully my mare is a total saint. I started out doing dressage to regain balance I had lost and also to give myself confidence. My trainer actually had a former student who committed suicide on account of epilepsy, so she was really good about knowing how to deal the seizures as well as knowing when/how to push me as a rider. Ironically, I started out riding the big ol’ Warmbloods (Westfalen and Dutch) until we discovered I was too soft of a rider and I ended up riding the “crazy” Arabian and we melded perfectly. I ended up having to quit due to funds, but continued practicing what I could from reading, watching videos, and what I remember. That was about four/five years ago. Dressage is still my first love (as far as riding goes).

Since then I’ve had jumping lessons and I actually did some Western Pleasure (ugh, not my thing, showing western), timed events, and now I ride in a drill team, ride in parades, and primarily do trail rides and exercise horses.

I’ve never had a problem cantering or galloping except maybe that I enjoy it too much? Ha. I recently switched neurologists from one who nearly killed me to one who finally listens. With that came a medication change (I now take keppra, 1000 mg, and topamax, 200 mg). Recently I was riding my best friend’s gelding who has a relatively big canter and as I transitioned him into the canter I started to feeling like I was blacking out, even having an “out of body experience.” It was very weird. I would stop him, walk, trot, and then transition back into the canter. Same thing. HE finally stopped and I fell off and was completely out of it.

Today I went into my neurologist (an emergency visit on account of this) and my neurologist thinks I’m having complex partial seizures (which I have period) on account of getting “overly excited” and heading for a tonic clonic if I’m not careful. So, no riding for a while.

The issue I’m dealing with now is how to stop getting overly excited when I transition into the canter or gallop. My mare has a small canter as well as my friend’s Arab. However, my mare is laid up right now and I haven’t ridden the Arab recently so I don’t know if I will have the same response (and to be frank, I’m now scared). Elsewhere I was given sound advice on breathing exercises, meditation, etc. so I’m wondering if that would help. I just don’t know.

I have seizures every day (simple and partial complex), but basically we’re trying to prevent them from getting bigger (just a bit of history on the illness itself). It’s probably dumb that I ride, but I love it too much to give it up, and as I said, my horse is so good about it she even warns me before I have them and can even tell when I’ve switched up my medication.

Just reading on here, several people have posted that they haven’t had seizures in years… I’m jealous. I’d love to go a day without a seizure. My pony is what gets me through it though.

[Vegas_Sky]

Go for it

I’m sorry you have to deal with this. It’s no fun. I have epilepsy due to a head injury. For me, it’s all still pretty new - my head injury was six months ago and the seizures started about three months ago. I’m still trying to get balanced on meds, but so far I’m having some success with Lamictal. I tried Keppra first for only a week, but it was NOT GOOD. Made the seizures worse and I had the Kepprash, KeppRAGE like mad, and all the other side effects.

I know what you mean about their frequency too and about being jealous of those people who go years with no seizures. Before medication I was having simple partials and complex partials multiple times per day. That makes it hard when you’re sitting in class and all of a sudden you gain awareness again and all your friends are staring at you. What’s worse for me though is when I go into a seizure that’s somewhere in between a simple and complex - I lose control of my body, start doing the automatisms, and just stare at whatever fixed point my brain finds. I think this is worse for me because I’m somewhat aware of the people around me calling my name and asking if I’m ok, but I can’t do anything or respond to them.

Anyway, after stopping the Keppra (which made my myoclonic seizures so bad that they were happening multiple times per hour) and starting Lamictal, I have much better control. Myoclonics are down to maybe a couple small ones per day (but that’s still more than before I ever started the Keppra, I think it really messed up my brain), and the simple partial seizures are happening once or twice a day, the partials once or twice per week, and the tonic-clonic once or twice per month. Fortunately for me, 80% of my really bad partial seizures and all of my tonic-clonics happen just as I’m falling asleep, while I’m asleep, or rarely just after I’ve woken up. I’m seeing my neurologist again in a few weeks and I’m hoping that we can add a med or adjust dosages to get better control.

As for meditation and breathing, for me it does help. If nothing else, it just helps relieve stress, which is a trigger for me. I started a Yoga class just after New Year and I absolutely love it. It really helps me get focused and relieve tension and build fitness and flexibility.

As for riding, I say do it. Safely, of course, but if you want to do it, do it. This disorder brings enough stress and depression to our lives as it is; how much more of that would there be if you had to give up riding? I have been told SO many times that after my TBI and with the seizure disorder that I should not be an eventer any more or that I should just give up riding altogether. So not going to happen. My seizures aren’t controlled, and if I fall again I might hit my head and I might become a vegetable. But I can’t live my life in a bubble because it might happen. Heck, I could die in a car crash on my way to school today - that might happen too, but I still do it.

So be smart about it, wear a helmet for pete’s sake, and enjoy what you do. Start out small to regain your confidence, and build slowly from there. Try keeping a strong focus as you transition into the canter. Focus all of your energy on making it a clean transition and making the canter the best quality it can be. Maybe that will help all those pesky neurons from misfiring if they already have a job to do. Just my uneducated opinion, but it seems to me that the more I am actively using my brain, the less likely I am to slip into a seizure. Not to say it doesn’t happen, but I still think it helps. If you find that you still are having problems with the canter, find a way to make it “unexciting” - don’t take the fun and joy out of it, but find a way to do it that keeps your brain at home base.

Just my thoughts on the matter. I really hope you find some solutions. It’s a terrible thing to go through, but I’m rooting for you

[DianeS]

My daughter (24) has seizures and rides barrel horses. She generally has seizures in the afternoon so she rides in the morning. Many people tell her she shouldn’t ride at all, including her doctor. They all say “well what if you fell off” She’s never fallen off and I know plenty of people who don’t have seizures and have fallen off so…whatever.
With all that said, I’d try getting a horse you are very comfortable with to do the transitions into a gallop. Seizures are many times really stress related. Get a horse you trust, do a lot of transitions from a walk to a trot. get comfortable with that for a long long time, then try the canter transition.
Whatever you do, wear a helmet, and body protection isn’t a bad idea either.
I’ll try to get my daughter to post later today whatever she does to keep focused and calm to keep things under control.
D

[system]

What I don’t get is that my neurologist said they will never be able to control the little seizures. He told me recently that the goal of my medications are to prevent the little ones (the simple complex and partial complex) from going into a tonic clonic. That’s very frustrating!

I’m not allowed to ride right now and besides my horse is having some foot problems that we’re trying to deal with. But a friend of mine who used to have epilepsy and outgrew it is going to give me lessons to try and work on transitions. I wanted to go back to my dressage trainer but she went up from $65! Too expensive.

Anyway, thanks so much for the advice. We’re going to work with a few things and see what works. It’s just frustrating.

[AliCat518]

Garboesque–sorry you have to go through this! VERY frustrating, huh? I’ve had epilepsy since I was 13-ish. I had 3 tonic clonic’s in a short period of time. Back then, it didnt scare me at all. (Dang, I was a brave/stupid kid!) I was seizure free for 10 years until this January when I had a partial seizure (well, they arent exactly sure what it was, but thats what we’re thinking!)

Driver’s license REVOKED for 6 months (ouch). My dr has known since my first seizure that I ride horses and that fact wont change. Every appt, he asks me if I wear a helmet every ride–which I do. Since the last seizure, he says absolutely no riding without supervision, which ive been following, but its difficult. (Especially since my horses are at home, and i’m at home all day, with no where to go without my drivers license!)

I know I cant really compare my experience to yours since my seizures are pretty darn controlled, but I know the feeling of being scared, especially when riding. I’m on 2000 mg Keppra twice a day. Yes, you read that right…4000 mg a day! You and your dr might need to adjust meds quite a bit before you find the right combo. I tried Topamax, Lamictal, Valproic Acid and a few others (please forgive me if I butchered the names…its been years since I was on them) and I had awful side effects on all. I am very tired on Keppra and have quite a bit of “KeppRage” but its been controlling my seizures.

Anyway, sorry to give my whole darn story! My advice to you is: Wear a helmet–seriously. Every ride. A vest might not be a bad idea either. Focus on your breathing while riding. I find that when i’m focusing a lot, i’m less likely to to have a seizure (not scientific at all, but darn it, I know my body better than anyone else!) Have supervision at EVERY ride. Lord knows the one ride when someone isnt there is when something bad would happen.

And lastly, (and more importantly) dont let anyone tell you to stop riding. I would go crazy and be much more stressed if I didnt ride. Your dr and others will be worried about you falling. Well, the truth is, EVERYONE falls off, epilepsy or not. I’ve fallen off literally dozens of times (been riding for 20 years! and lots of greenies!) and none of them were caused by epilepsy. Plus, if you have a seizure and fall, your body is probably more relaxed than if you fall normally. I’ve heard that you get less hurt this way.

Come to COTH anytime you need to talk about this stuff. There are a bunch of people on here who will talk you through stuff and give you great advice!

[Bluey]

We have had students with seizures and every one was different, so hard to say what to do.

I will say that, if you are having a problem with canter, could you try a reining horse?
Reining horses spend their lives cantering and transitions to canter and back and are so smooth it is a real non-event at all, you don’t hardly know you changed gait.
Such a horse may help you with that bit of anxiety and once over it, the knowledge and motor memory will make transitions with other horses much easier, where cantering won’t be a trigger for the seizures any more.

[Xfactor]

I’m the Mom of a daughter who suffered with seizures that totally robbed her of her childhood.
We lived at Boston Children’s hospital and 9N was our home for years! Med flights for status was routine, sad to say.

That said, I may have a different take on the stuation.
My daughter’s only passion in life was her love of animals and especially riding. She rode with a woman who was amazingly compassionate and careful…but there came a time that for safety, she had to set riding aside. By the age of 11, she was in a wheelchair as she would often have 30 seizures a day.

Perhaps stay riding, yes, but passing on cantering and galloping for this period of time, is a wise decision? A fall could mean a broken neck, spinal injury, and many other issues that could be far worse than the seizures.

Intractable seizures are very hard to live with, as once you gain control, they seem to find a way to creep back in. =(

BUT…as disheartening as it is to live with them, it could be so much worse with a spinal cord injury from a fall, after falling off at a gallop; know what I mean?

There is still great enjoyment at the walk and maybe trot even, and just the special time spent with the horse, without risking greater damage still, to an already assaulted brain.

My daughter was not a candidate for surgey as she had too many fire spots too deep and frankly as her Mom, a hemispherectomy with a 50/50 chance of success was not an option we wanted to pursue!

She did participate in many studies of some of the drugs you all have mentioned, before they were approved, and had no successful control.

Felbatol was the only drug that ever helped, and tho it was indeed scary being on it, it controlled her seizures by a whopping 50% the first year 75% after a few years, and here a decade later, she has been seizure free for 4 years.

She resumed riding full out, once she had control at about 75% as she 99.9% of the time started with c/p and if it went generalized, chances were always quite high it would be a status issue.

She always stayed connected to horses, if it were as a gate girl at a show, the kid who hands out ribbons, helping to untack and brush…it was never as fulfilling as riding, but it still fed her passion and kept her dream alive, that she WOULD ride again.

Balancing joy, safety, risk…all these things are so hard, when riding is THE thing that keeps ya going; but as a Mom, I would have to say, that knowing a certain action is a trigger, and doing it anyway, is just not a healthy choice, and could in fact, end in a devasting way.

Never give up hope. My daughter was given an absolute zero chance of having even minimal seizure control.
We tried every med here in the US, she was in every study, tried ketogenic diet, and went abroad for meds not legal here.

Was the felbatol a miracle? Maybe not…but a miracle did in fact happen, as she has been seizure free for 4 years, is now married and has a baby, horse, and a new little business.

She still won’t drive, and will never ride alone…but life is better than ever.

Keep your hope alive, but be safe!..please.