How To Manage Epilepsy On The Trail

****Disclaimer****

I am not a doctor. I have a very mild form of epilepsy and not all of these tips may work for you. Please consult your neurologist before leaving for any extended hike. The purpose of this post is not to provide definitive instructions for handling seizures on trail but instead to offer some tips and support for anyone who may think that it can’t be done.

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I was diagnosed with absence seizures sometime around the third grade but had been showing symptoms for a while before that. Mine are luckily very mild, I basically just kind of space out for a second, but I can remember teachers disciplining me for “not paying attention” as far back as the first grade. Back then my seizures would last much longer, I’ve been told as long as 10 minutes or more. With medicine I don’t usually have them at all but when I do I’m down to fractions of a second. I don’t know when I have them either. I could have had 100 (highly unlikely) during the course of writing this and I would never know.

The point of all of this is to explain my situation, to stress that as far as epilepsy goes, I really don’t have it all that bad. There are MANY people out there that have it much much worse and while you should always be careful to hike within the confines of what your neurologist deems possible, I wanted to try and help anyone who, like me, loves backpacking but may need help. You may need to be more careful and aware than your fellow hikers, but it is possible to enjoy a long distance hike while managing your seizures. You don’t have to let it be a roadblock that keeps you from accomplishing your dreams.

#1 Consult Your Doctor

I can’t stress this enough. As far as seizures go, no one knows what your limitations may be better than your neurologist. Mine has been great. We’ve talked about what to avoid while I’m out there are she’s  helped set me up with more pills than would normally be in a refill so that I would be sure to have enough to see me through.

Again, my seizures are mild so that is about the extend of what she’s needed to help me with but, if you have a more severe form of epilepsy, there may be other considerations your doctor can point out and help you with.

Please don’t refrain from talking to your doctor because you’re afraid of what they might say.

 

#2 Know Your Triggers

Mine are mostly stress and lack of sleep which seem to be pretty common for epilepsy in general. So make sure you go to bed early, sleep in a little later if necessary and have a comfortable sleep system so you can sleep soundly through the night. Hiking is a de-stresser for most but, if you do find yourself getting stressed take a minute to relax. Try yoga or meditation or whatever else works for you.

Also be aware of any signs that you be heading down seizure lane. For instance I get myclonic jerks (they’re a lot like a muscle spasm) and dizzy spells when things are starting to get bad. Listen to your body and take the necessary steps to avoid trouble.

 

#3 Wear A Medical Alert Necklace

I recommend a necklace rather than a bracelet as it’s less likely to get caught on things. Mine look like dog tags but there are much prettier options out there. You should be sure to put any allergies and medications that you take on there as well.

#4 Tell Your Hiking Companions

If you do have a seizure, it’s pretty important that those around you know what to do. Or what not to do. This is something I’m guilty of not always doing. Not because I’m ashamed of it or anything but just because it’s hard to work that into conversation. At this point just about everyone I know knows that I have them.

 

#5 Medicine Management

This one should go without saying but, make sure you have enough pills for the time you will be out there. If you’re doing a thru hike, it’s going to be unavoidable for you to not have some kind of bounce box or mail drop system going on. I don’t like to carry more than a week worth of pills on me at a time and I always carry them in a Ziploc bag so I don’t have to worry about them getting wet. Obviously it’s important not to miss a dose so get yourself in a routine. Take them as soon as you get to camp or right after eating. I find that if I forget to take them and my pack is already hung up, I tend to want to be lazy and just skip it for the night so, I like to take them with breakfast and dinner before I’m anywhere near being settled down for the night.

 

#6 Listen To Your Body

Like I said earlier, pay attention to your triggers and any signals that you may have a seizure and don’t push yourself. If you need to take a couple of days in town, do it. If you need to slow down and take shorter days, do it. If you need to quit, there’s no shame in that. You can always try again or finish your hike later. In the long run, you’re health is far more important than hiking.