Riding with Epilepsy

[mandimai]

I developed severe epilepsy about a year ago after an onslaught of neurological symptoms being ignored by numerous doctors. I have PTSD, so they like to chalk everything up to being in my head because of it. Come to find out, I have a brain tumor so, surprise surprise, I wasn’t make it all up.

Since the seizures started I’ve been pretty out of commission. I had to stop riding, quit school, and lost all my freedom to get around after I turned in my keys and became too weak to walk long distances. Recently, however, I’ve been lucky enough to make a friend in the area who has an easy-going mare I can tinker with. Being around a horse again, however briefly, has done wonders for my spirit. I am stuck, however, on how I should deal with the inherent risks associated with riding with a seizure disorder. Is it safe to ride? Is it ok to go for a short hack down the road and back alone? What precautions should I take?

I’m pretty on top of letting someone know where I am, what I’m doing, and when I should be back. I have my cell phone on me, so if I don’t answer people know there’s a problem. And I always have a helmet on. Beyond that, I’m not sure what else I can do. I generally have seizures at night, a time when I probably won’t be in the saddle, but you never know when they could pop up. Does anyone have experience with this and, if so, do you have any words of wisdom?

[AzulBlue]

Wow…you’ve been through alot recently, sorry to hear you have so many issues. With that being said, I don’t think it would be a good idea to ride…ever. Sorry, but you never know when a seizure will hit, and to me, that would be risky…VERY risky. Could you be happy just brushing her horse? What about trying to find someone to introduce you to driving? I would still have someone with you with that also…but there has to be some safer options for you to stay involved but stay reasonably safe. Good luck

[AliCat518]

I’m sorry to hear of your problems. I ride with epilepsy, however mine is controlled. Can you tell when the seizures will happen?

If I were you, I would not hack out at all, never ride alone and always wear a helmet. My neuro is very adamant about my helmet being worn every ride

[Come_Shine]

Have you talked to your neurologist about this? I would expect riding to be the same as driving a car. People can go back to driving a car sometimes when their seizures are well controlled. Your neurologist would be the most able to discuss this with you.

I would think your risk in riding depends on what kinds of seizures you have, whether you have any warning, and what happens when you have a seizure. Walking on a quiet, safe mount and having a small seizure where you just zone out for a few seconds would be a lot different than galloping down to a fence and having a drop seizure without warning.

One of my students has epilepsy.

[Lost_at_C]

Hugs for you Mandimai - stay strong! As the others suggested, in time your seizures may become better controlled, or at least you may develop a better sense of when they are likely to happen. Some people learn to recognise their own individual warning signs/“aura”, and of course some types of seizures would be more risky than others.

I’d suggest not riding alone until you become more confident about your own condition, but please, please don’t let it stop you from living your life! Too many people will try to insist on wrapping you in cotton wool, but you must decide for yourself what risks are worth the taking. That’s my trifling two cents worth, based on my own experiences. On the bright side, keep in mind that horse riding has actually been linked to a reduction in seizure activity for many people.

[SCMSL]

I can relate to your issue.

A couple of years back I also developed epilepsy due to another condition. I wasn’t able to recognize the signs, so it would be completely unpredictable. Fortunately my underlying condition was managed and I am currently 100% ok. I did stop riding for a couple of months but went back per doctor recommendation, he thought it would be good for me.

I did take a couple of special precautions, however.

I would never ride alone. I’d always wear a helmet and a hit-air vest. If I had a seizure while riding and fall, the vest would just inflate and I’d be okay.

Like others said, talk to your neurologist. You may also want to contact your Paradressage local desk and ask about other riders with epilepsy, maybe there is someone in your area you could talk to.

Best of luck and hope you feel better soon

[betsyk]

In therapeutic riding we have a lot of riders who have seizures, so seizures in and of themselves aren’t a reason not to ride. But - big but - our setting is very controlled. It’s really a discussion you need to have with the friend who owns the horse. Should there be someone around the barn when you’re there? Hanging out together, or can they be out mowing or doing their own thing? Ok for you to ride - with saddle? Bareback? By yourself with someone on the property? Only with another person riding too? Fenced area? Around the yard? Down the road? There’s no single right answer but it’s something you need to talk through carefully with your friend.

If I were your friend, I’d probably say “let’s ride together” and then I’d know I’d be there in case anything happened. And where we rode would depend on what kind of seizures you have, what sort of medical attention you need when you have one, and the pattern they follow - at night, change in weather, stress, etc. and how easy it is to get medical attention at the farm. Where I board it’s a really crappy volunteer basic, basic EMS. Our therapeutic riding center is 10 minutes from a small local hospital. BIG difference.

[BuddyRoo]

Here’s what I can tell you. The mare you’re riding has had little kids and old men on her and gets under them if they get off balance–I have this on video. It’s pretty cute but it’s also very functional. And if they’re going to fall off anyway…she stops…I also have video of monkey kid hanging off her neck then dropping to the ground and she was all “I’m pretty sure you’re going to get BOTH of us in trouble!” So if you need to be on a horse who isn’t going to freak out, you’ve got one. I think we just need a good plan. If you only have 30 seconds or so warning, you get off. Mare will go to grass. I’ll be there. And you will be okay. Because your seizures are often tied to stress, I’m going to guess you’re going to be fine on a horse because you’re a horse person who finds a happy place on a horse.

But I will be there, okay? And when I go overseas…if you’re still here, we’ll find a barn who can accommodate the both of you.

[mandimai]

Thanks Buddy. She is such a very good girl.

I really appreciate all the suggestions that have been made. I’m not one to give up being around horses and hopping on once and awhile, even though the epilepsy poses a bit more of a risk. There’s substantial risk involved in just about anything horse related, and the benefit I get out of being around horses far outweighs any of that. I think being able to get some horse-time will actually help reduce the seizures, because it does wonders to melt away stress and anxiety.

That being said, I’m not really going to be out at the barn alone. My boyfriend or a friend will always be there, and know what’s going on. I always wear a helmet (too many close calls in my lifetime not to!), and like the air-vest idea as well. I looked em up and they are rather expensive, so that might have to wait awhile. But definitely something to save toward.

Once I get competent medical care I think I’ll be able to take big steps toward getting the seizures better controlled, and my other varied medical problems treated. Not having health insurance has made it next to impossible to find doctors who will see me, so I haven’t really been able to bring up the topic of riding or anything else with any of them.

[shayaalliard]

My stepdaughter rides with epilepsy. She is 9, and we have made just a few rules- she doesn’t ride alone- she either has a ground person hanging out or someone riding the other horse. She always wears a helmet. I just got her a shorter older pony to play with, and it has worked out well for us.

[cloudyandcallie]

When is your surgery scheduled to remove the brain tumor? Usually after removal, there are no more seizures.

Hopefully the surgery will allow you to get back to riding within a few months.

ETA over many decades, I’ve had 4 very close friends who had brain tumors. And the tumors were discovered when each of them had a seizure.

[mandimai]

Unfortunately I don’t have anything scheduled right now. I have no health insurance, so that makes everything really complicated and healthcare almost impossible to gain access too. The brain tumor was diagnosed back in March, but I haven’t received any follow-up treatment since then. No biopsies were done, and not much has been done since then. It’s worrisome to me, because we have recently found bone tumors as well and it was suggested I see an oncologist immediately (duh) – an impossibility without health insurance. I’ve applied for medicaid, but that’s a long hard fight to get approved for. We’ve been struggling to get it for a good 6 months, and are getting set back at every turn. I was accepted into the University of VA to be seen at low-cost, but need referrals to get in. They said it is a 3 - 6 month wait to see a primary care physician there, who could give the referrals, and said that ER docs are unlikely to refer me in.

So, as it stands the epilepsy is very poorly controlled with the medication I am currently on. I had a neurologist I saw in the ER want to change it, but since she can’t see me without payment upfront, there’s no way to continue care and get the meds adjusted. My current meds are also causing some pretty dicey heart issues if I take them at the dosage I’m supposed to (resting heart rate stays between 120 - 180, and is irregular). I usually have a small window of warning before I have a seizure, and can get a general feeling that one might be coming on way in advance. They are mostly triggered by intense stress of any sort (physical, psychological, pain, etc), though I’ve had some random ones as well.

All in all, it’s been an uphill battle with no end in sight. But being back with the horses has made me so, so, so much happier. Thank you BuddyRoo!

[cloudyandcallie]

I’m confused. If your tumor was discovered in March, and is operable, the doctors should have sent you to the nearest public hospital, where you would have been assisted in getting medicaid, if you are eligible. And you should have had your surgery back then whether or not you were eligible for medicaid. You’d just keep getting billed by the public hospital. And of course UVA has a great medical college.

If your tumor is inoperable, they should have given you radiation to try to shrink it.

A biopsy would have occurred when the surgery occurred.

You should immediately go to to Richmond to the public hospital there and be treated. Tumors usually grow. It is unusual for them to stop growing in the brain. Pressure from the tumor causes the seizures. An operation to remove the tumor, or radiation to shrink it, relieves the pressure and therefore the seizures should stop or diminish in frequency.

Seizures caused by a brain tumor are not the same as epilepsy. While the causes of both originate in the brain, seizures caused by a brain tumor are usually cured by surgery to remove the tumor, if all of the tumor can be successfully removed. Go to the hospital NOW.

[mandimai]

I was told in March the tumor is inoperable. Whether that’s true or not I really don’t know, as I haven’t been able to get a second opinion. I have a lawyer now helping me with the medicaid. I agree with you on what should have been done. Sadly, it wasn’t. I’ve been to multiple ERs since then, and have gotten nothing but poor treatment. Right now UVA looks like my best option unless, fingers crossed, medicaid miraculously comes through within the next few weeks.

[SouthwestRerider]

Unfortunately, this scenario of needing care and not getting it because of no insurance, is NOT unusual in the US. I had a good friend who had the exact same experience- sudden discovery of a brain tumor, but no health insurance-she had just changed jobs and was in Texas. She did get a social worker who pushed through the paperwork and unreasonable waiting periods, and found a slot in a research center who provided (experimental) treatment. I have always wondered if she might not have survived longer with the timely treatment an insured person would have gotten.
I am jinggeling (sp?) for you.

[Vegas_Sky]

Oh, you sound so much like me…granted, my seizures are caused by a traumatic brain injury and not by a tumor, but my seizures also happen almost exclusively at night. We are also playing the drug game, since my seizures are NOT well-controlled. I would also like to add that I hate the way AEDs make me feel - stoned and stupid.

I still ride, although I am limited by other things related to the accident that left me a brain-injured epileptic. My husband and I have some common-sense rules that I follow: 1) If I feel like I am going to have a seizure at all that day (I am blessed by rather extended auras), no riding and no being at the barn unattended. 2) HELMET - always, no exceptions. 3) No jumping until I get approval from my neurologist. 4) Don’t do anything stupid.

I’m sorry to hear about your struggles with the healthcare system. I am so blessed to have my parents’ insurance for another year, but even after that, we are still left with huge out-of-pocket costs for underemployed newlyweds. At least we have access to a neurologist and AEDs.

If you have any questions, want to vent, or just need someone to talk to, please pm me!!!

[eidyn]

I have been epileptic for 12 years, throughout my pony, junior, and now adult show careers. I’m medicated and fairly controlled, but I don’t have clearance to drive. I don’t tell my neurologist I ride!!! I always have someone within seeing distance of me, always have a helmet on as soon as I step in the barn, and medicated I have about a 10s max aura before I episode. Enough to step out of the stall and sit down or stop the horse and slide off. I ride a lot of horses and I haven’t had many seizures, but all have been very well behaved and usually stand guard over or beside me if I have a seizure. I generally know a couple hours before that it’s a bad day. I have a number of medical conditions so it could be anything, but those days I don’t ride or if really necessary, a flat lesson with a body protector. I ride 7 days of week - my horse and about 20 schoolings/catch rides and currently compete in the high performance hunters, working hunters, and show jump up to 1.4m. Don’t let this prevent you from having a life without horses!! Be open and be prepared for some opposition from someone but you know yourself best. Keep safe, monitor when your seizures happen and avoid riding those days, and accept the limitations. Beyond that, it’s nice to have riding as an outlet when you’re dealing with crappy medical news.

[romewhip]

If I were in your position I’d pretty much do what you are doing- and the benefit you get emotionally from being around horses and riding is too good to pass up. I’d just always wear a helmet, and I’d also think about peacock safety irons, so that if you so seize and fall off your feet won’t get stuck. It sounds like you have the ideal babysitter horse to ride, and riding itself will help your body gain strength and coordination. You already have the bases covered for letting someone know when you’re riding, so enjoy and let the outside of the horse help heal the inside of the human. (yes, bad twisting of the old quote!)

[kerlin]

The OP’s posts are over a year old now…does anyone have an update on her? It didn’t sound good in the last few posts.

[mandimai]

Goodness it’s been a long time since I’ve been on COTH! Kerlin, a good bit has happened in the year and a half since I posted this. I didn’t realize the topic was still active; so sorry for not following up and leaving everyone to wonder. Here’s a bit of an update!

My now husband got laid off in August 2013, which forced us to sell our house in VA and moved to SC. He was offered a job in NC three months later, which moved us to Raleigh in April. I haven’t found a buddy to ride with or a horse to spend time with here yet, so I’ve been having major horse withdrawals. BUT I have been able to get better health care, which has been life changing. I’ve been seizure free for over a year and have been able to start driving on my own again. I’m finally to a point that I’m well enough to consider taking a light load at UNC to finish up my last year of college, and with the way things have been going I might even have a future in the workforce. I still do have some pretty substantial limitations: major chronic pain, weakness, tire easily, and I have very little stamina most days. But it is a huge improvement from where I was when this thread began.