Things I Wish Everyone Knew About Epilepsy

Posted on March 15, 2016

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To spread epilepsy awareness, we’ve asked some of our favorite bloggers to share what they’ve learned while living with epilepsy. Our friend Ellis shares what she wishes everyone knew about living with epilepsy. Please share with the friends and family in your life!

I started having seizures at the ripe old age of 24. It took me six years to find a good neurologist and effective treatment, and as it turns out, I’m one of the lucky ones. Here are a few things I didn’t know about epilepsy until I was staring it in the face:

The doctors don’t know.
The brain is still a mystery. The first time you have a seizure, you’re rushed to the hospital and given a CT scan. That scan might show a tumor or brain deformation. Or, as in my case, it might be perfectly normal.

At this point, your doctors throw up their hands. One seizure could be anything. You may not ever have one again. Whoops—but I did! And still my brain looked fine.

You look to your doctor for reassurance and answers—especially when you’ve been healthy your whole life, you’re scared, and you don’t know what is going on. Unfortunately, medical science just hasn’t figured out why most seizure disorders occur. It’s a tough thing to have to accept.

It’s different for everyone.
The problem with nailing down epilepsy and other neurological issues is that no two people suffer identical forms. Abnormal electrical activity can affect many different regions of the brain, to different degrees, leading to all sorts of weird problems.

Some epileptics have the violent, thrashing seizures most people are familiar with, but not all do. Some epileptics just stare off into space. Some lose bowel or bladder control. Some have orgasms. And did you know hiccuping might be a form of seizure? (There’s no consensus on this.)

I’ve been told my seizures look scary, but they sound pretty uneventful as such things go. I tense every muscle in my body, and stop breathing long enough for my lips and hands to turn blue. I’m unaware of it because I’m unconscious at that point. It’s like sleeping in on Saturday, or all those billions of years before I ever existed. I couldn’t care less until I wake up. Then I get treated to a headache, nausea, amnesia—and often, a crushing sense of guilt. Sometimes I’ll cry and apologize to everyone around me.

A person’s epilepsy also may or may not have a trigger.
Strobe light patterns may trigger a seizure in some epileptics, but not others. I’m not photosensitive, but stress does seem to make my seizure activity worse. As does my menstrual cycle—a poorly understood phenomenon called catamenial epilepsy.

Frequency is also variable.
Some people’s brains have epileptic activity all day long. Others may go months or years without a seizure.

It might come with spider-sense.
Some epileptics, like me, have a set of symptoms that proclaim BEND OVER, A SEIZURE IS HERE. This is called an aura, or partial seizure. My symptoms involve feeling spaced out while my thoughts spin out of control, referred to as forced thinking. Then I feel nauseated, sometimes full of dread. Sometimes I get a sense of déjà vu as well, just to change things up. I also stop being able to spell or string words together in a sentence.

I can never control whether I’m with-it enough to lie down somewhere or tell someone what’s going on. In the latter case especially, I often can’t push words out of my mouth. Sometimes I wave my hands in distress. Sometimes I run to the nearest bathroom, convinced I’m about to throw up (I never do). Sometimes a full seizure follows, and sometimes it doesn’t. An aura by itself is not uncommon. Afterward, I might feel anywhere from “Well, that was annoying. Who’s up for coffee?” to “I’m going to bed, wake me up next month.”

No one knows how the medication works, or if it’ll work for you.
That is not an exaggeration. You know what seizure medication is? “Hey, we gave this pill to sufferers of Disease X. The Disease X patients who also have epilepsy stopped having seizures while on this pill. This pill is now an epilepsy drug!”

You probably don’t have Disease X. You probably don’t need treatment for Disease X, or any of the horrible side effects that come with it. Too bad! There is no medication specifically targeted to treat epilepsy. There’s just a huge swath of these “Disease X and also seizures” meds that you get to Russian roulette your way through until you find one—or a combination—that stop your seizures without killing you.

Again, not an exaggeration. The first medicine I tried made me suicidal. The second gave me a serious allergic reaction. I was damn lucky to wind up unscathed on Pill #3, but this one has a reputation for a wee bit of severe liver damage. I have to get my blood tested twice a year to make sure my liver isn’t, you know, disintegrating.

But, no more full seizures. It’s a trade-off I learn to accept.

Some people never find a drug that works for them. Depending on how badly epilepsy affects them, surgery might be the next option. It’s no more complicated than cutting away the part of brain in which the seizures occur. Yay?

Oh- and never miss a dose. That in itself can trigger a seizure.

There are odd things you can’t do anymore.
If you don’t have an aura, you’re often prohibited from driving. You’re not allowed to skydive. You may or may not be able to donate blood anymore—not just because of the medication in your blood, but also because those medicine levels drop when you give blood, which itself can result in a seizure.

Due to the medicine(s) you’re on, you may have other weird prohibitions. I can’t eat grapefruit or starfruit, for instance. Also, alcohol has a completely random effect: either it doesn’t touch me at all, or it puts me right to sleep.

Being on chronic medication means you always have to worry about how much medicine you have on hand, and when to harass your neurologists for prescription refills. A bad neurologist might never return your calls. Then you run out of meds, have a seizure, and back to the ER you go! (Yes, this happened to me. A good neurologist is hard to find, but invaluable.) When you travel, you must remember to pack your pills and a note from your neuro. Yes, Mr. TSA Agent, I’m allowed to have these. Really, who’d be taking this stuff for fun?

You feel like it’s your fault.
Because no one really knows what’s going on inside your head, why it started, or how to make it stop, it’s tempting to look for your own answers. It could be my fault. There might be something I did or am still doing that led to all this. I may never know, which can be really frustrating sometimes.

Google things like neuroplasticity, and it sure seems like it should be possible to rejigger your brain somehow so the seizures vanish without medication or surgery. You begin to feel like there’s something you’re not doing that you should be doing. What could it be? “What if I avoid stress and caffeine from now on? That ought to stop the seizures from triggering!”

So you experiment a little, cross your fingers … then you have another seizure, and you feel like a failure who places an unfair burden on everyone you care about. I feel like I have it easier than my loved ones, who have to watch it happen or be prepared to rush home at a moment’s notice because I feel an aura coming on.

What to do for someone having a seizure:
There are a lot of first-aid sites that cover this better, but here are a few general points:

  • If the sufferer is thrashing, don’t restrain them. Just make sure they don’t bump into anything.
  • Don’t stick anything in their mouth.
  • When the seizure is over, turn them on their side (if you can) to open airways.
  • A seizure does not automatically necessitate a trip to the hospital. If the person has a known seizure condition they’re already being treated for, it may be OK for them to stay home. See if there are family or friends nearby who can confirm. When in doubt, call an ambulance.
  • Check for medical IDs that the EMTs can look at when they arrive. It’s important for them to know what medication(s) they’re currently taking, and if they have any allergies.
  • As they’re coming around, be calm and reassuring. They probably have no idea who they are, or why they’re on the ground feeling like crap. When it hits them, they might be accepting, or they might freak out. Again, let them know they’re OK.

This post was written by Ellis Morning and originally appeared here. Reposted here with permission. Ellis is a writer from Pittsburgh, PA. Check out more of her work at her website, www.ellismorning.com.

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A MyEpilepsyTeam Member said:

Thanks

posted about 4 hours ago

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