Sita’s Top 10 Things To Know About Living with Epilepsy

1. Phoning an Ambulance is not Always Necessary

Ambulance trips are usually annoying, and expensive. Let me stress the latter: EXPENSIVE. Okay, the most recent times that I’ve been in an ambulance is when I have been in a province where I was covered by a different province. Long story short. A couple weeks later, I received a lovely bill in the mail, charging me for their services. This is not to say that ambulance trips are not always necessary. But generally if I am out and about and I have a seizure, that is everyone’s immediate reaction. I appreciate the care, but remember to time the seizure and if it goes over five minutes phone 911. A hospital can do nothing for me, except throw me in a bed, jab an IV in me filled with Ativan, and give me an emergency button to press for when I feel a seizure coming on. Basically, we’re just waiting for a seizure to happen. Otherwise, they’ll send me home. Ambulances can be very important for other people, but for me, they are rarely needed.

2.Recording Seizures is Absolutely Essential

Recording seizures is no fun, because you have to go through your mind and try to remember what happened during the episode that just happened. It might have been traumatizing, and you might not even remember it very well. I find that if I was alone when I seizure occured it is difficult to record, because I have no one to ask questions. Some questions that I might ask are: “Did I seem kind of out of it when we were chatting on the couch before the seizure happened?” Or, “Was I drooling when you found me on the floor?” Kind of gross I know, but recording seizures help keep track of whether your seizures are increasing or decreasing, and I can show them to my neurologist on my visit. I can also track them and see whether they occured during highly stressful times, during my period, or other notable events. I used to just write the number of seizures I had out by hand in my agenda, but I found a great online tool www.seizuretracker.com that goes into detail of every seizure characteristic. The site also allows you to make graphs to see how many seizures you’ve been having per week per month. It’s an excellent tool to have, and I use it when I go to see my neurologist, as he needs to know whether my seizures have been increasing or decreasing, so he can increase or decrease my medications.

3.Drinking Coffee and Alcohol is a No-No

You have been hearing me rattle on about caffeine, but I can’t stress this enough! Some people with epilepsy seem to be able to have coffee, but I can’t have it. When I first got to University I would get lattes to look all posh, and then I was drinking way too much coffee because I was drowning in work and fatigue. However, coffee just makes me feel more twitchy, and it doesn’t pair well with my already super sensitive body.

As I have made the personal decision to drop coffee from my diet, Alcohol is a non-negotiable. There are even warning labels on some of my medications stating “to not drink while taking this medication”. I don’t drink because I am more likely to have a seizure if I were to, and I don’t want to know what would happen, I don’t want to risk anything. Some people ask me if I feel like I’m missing out on things since I can’t drink, but I honestly don’t, since I’ve never drank before. If I go to a party I will bring an Arizona (the huge cans of Ice Tea) and sip on it the entire night, or if I go out I will always order a ginger ale. I usually just feed off of other people’s energy, and nobody makes a big deal out of me not drinking, since they know I can’t. I’ve even been in situations in restaurants where I wasn’t charged for my drink because it was assumed that I was the designated driver. I don’t even have a license! Hey-o!

4.Getting a Good Night’s Sleep is a Non-Negotiable

Some people can pull all nighter’s and stumble through the day, barely managing, but they make it. If I lose so much as three hours of my regular 8-9 hours of sleep, it feels like death. I don’t have the coffee to keep me going, and I have the side effects of the medications to contend with. While I was in school, missing hours and hours of sleep wasn’t doable. I couldn’t give up all my energy studying or writing an essay and then go to school on no sleep and be expected to pay attention in lectures. There is no way that I can focus. I have learned that I need a very solid routine of going to bed. My routine has changed since taking my medical leave from school, but now I usually start looking at the clock around 9, and will crawl into bed around 9:30, meditate for 20 minutes, and then watch some Youtube videos or listen to some podcasts before sleep. It is hard when I get invited out to an evening party, and I start to feel tired at 11, while everyone else is still partying at full blast. What can I say though? I just need my sleep, and there’s nothing wrong with that.

5.Eating Regularly is Essential

It seems like a no brainer: don’t skip meals! It’s bad for you. But it’s so easy to forget a meal. You get caught up in something, and before you know it, the morning whizzes by, and it’s late afternoon and suddenly you can’t wait for an early dinner. I generally didn’t skip meals, but now I have noticed that when I spend too much time without eating between meals, I get sluggish. Then I get even more fatigued, and the fatigued can eventually lead to a seizure. So if I am going to be out and about for awhile, I keep a protein bar in my purse, just to make sure that I have some back up form of food source.

6.Self Advocacy is Difficult, yet Important

Sometimes I find it difficult to advocate for myself, because my epilepsy is a hidden disability . It is hard coming out and explaining to people that I have seizures and going over with them the proper protocol of what they should do if I have a seizure in their presence. It’s kind of like ripping off a bandaid over and over again. I have gotten more used to it, so I am getting better at speaking out for myself.Essentially, self advocacy is so important for epilepsy (and other chronic conditions) because you need to speak out for what you need. I have had to write letters, make phone calls, and have meetings explaining things all pertaining to my epilepsy. I am understanding my epilepsy better, so now that I have a stronger awareness of it, so I can better vocalize it to others. I am also learning to deal with the emotional aspects of having epilepsy, so it does not interfere with my self advocacy. It’s not a skill that comes overnight, but I’m getting there, slowly but surely.

7.Learn Skills to Deal with Anxiety

As you may have read in my previous post, https://sitagaia.wordpress.com/2013/03/10/dealing-with-the-anxiety-of-seizures/ anxiety plays a big part in having seizures. Even if I haven’t had any seizures in a certain        number of days, there still lies the fear that a seizure will occur in a second. I have learned that meditation helps to calm my breath, as well as talking about how I am feeling with my friends and loved ones. If I am not feeling well, it is essential that I talk about it with someone, no matter how embarrassing or silly it sounds.

8.Exercise on a Regular Basis

Exercise is super important! I can’t stress this enough! Before my medical leave, I would go to the gym at least four days a week. It made me feel so happy, and it helped release any stress that I was feeling. Now I am not well enough to go to the gym, but I go for a walk every day, and since I live in a very hilly area, I get a pretty good workout! Stretching your legs can do wonders for your body and mind! So don’t leave this one out of the equation!

9.Keep In Touch With My Doctors

It is essential that I keep in touch with not only my neurologist, but my family doctor, to monitor the progress of my health. I need to go to my scheduled visits in order to determine what direction to take with my medications, and to see if there are any other specialized doctors that I should be seeing.

10.Never Leave the House Alone 

I never leave the house alone! Even when I take my dog for a walk-I bring my dog! Even then, I bring my phone and tell my mom the route I am going to walk. My seizures are not stable enough for me to take public transit or anything like that, so I need to make sure that I am always accompanied by someone, just to make sure. It’s okay with me, I mean I never get lonely! Over time I will be well enough to go places by myself, but for now, this is just how it’s got to be!

Anyways, remember that this is my own personal list. Hopefully in a year (or less!) it will change for the better! What are some of the things off of your list? Lots of love! xox

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9 thoughts on “Sita’s Top 10 Things To Know About Living with Epilepsy”

  1. It’s interesting, a few things you’ve said before have really reminded me of migraines, but this list is almost exactly mine regarding migraines. 2,3,4,5,7,8 and probably 9 (I’m not so good at that one) are essential. Now I’m certainly not trying to compare a migraine to a seizure, but it does make me wonder if they could be related somehow.

    1. Well, I used to have migraines as a kid *knock on wood they don’t come back* and I’ve had tests that conclude that I have a “Migraine Brain”. I don’t think that’s a medical term, basically just a brain that’s susceptible to migraines. 😉 I’m not sure if they’re related, but they might be in the same neurological family (in the brain and all) and migraines are way more intense than a headache. Ah well, it’s good that you’ve found good coping strategies for migraines! Sorry to hear you have them though!

  2. What a wonderful list. Thank you for following my blog. Yes, yes, I would be interested in having you participate in a (possible) book. I would ask you to write about epilepsy from your point of view, however you choose to do that. Let’s see if I get more interest. Thanks again. I am going to follow your blog. It’s always good to have support and encouragement from others who have to live with epilepsy. Thanks for getting in touch.

    1. Okay that sounds great! Let me know once you get more interest on that project and I would love to be a part of it. Perhaps just contact me through the comments section of that post on your blog? Also, thank you for following my blog! I look forward to doing this project! Actually, would you like some help in terms of spreading the word? I’d be more than happy to help 🙂

      1. I have honestly been able to understand my health so much better since I started! i thinks its really important!

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