Soothe Your Seizures Playlist - The Sound of Music

Dating... with Epilepsy: Mandy & Rafael - Part One

Rafael and Mandy sharing a dance at Mandy's high school graduation party in June 2011.

   By: Mandy Krzywonski


Introduce you and your boyfriend, Rafael.

You all know me pretty well by now… After all, this is my blog, isn’t it? Anyhow, for those of you who are reading my blog for the very first time, my name is Mandy. I’m 18 years old, and I have had Epilepsy for about 7 years now. If you have Epilepsy, or your loved one has Epilepsy, you don’t need me to tell you that the road of love is extremely rough. (As if it isn't already?) Something about having a loved one with a disability makes things difficult, but it also makes things beautiful in a lot of ways that are extremely overlooked.

How to Live Well with Epilepsy - Part II - Self Control and Lifestyle Changes

One thing that almost all people with Epilepsy struggle with is self control. We see others out doing things that we wish we could do. Now don't get me wrong - Epilepsy should not hold a person back from being who they want to be - However, the sad truth is that some things should be avoided by people with Epilepsy in order to stay healthy.
In order to practice self control, one must make certain lifestyle changes. Some changes are easier than others to make, but with practice and a good support system, these can be achieved. Here is my ultimate list of what I have found to be the most helpful lifestyle changes. So read on to learn what these changes can do for you and your struggle with Epilepsy.

How to Live Well with Epilepsy - Part I - Natural Treatments

Hey everyone! Here is a brand new part of my blog series that will be called How to Live Well with Epilepsy. I will be featuring ways to live well with Epilepsy while still dealing with this illness. I hope you all enjoy, and please, please, please leave feedback on my blogs. If there's any topics you would like me to touch on I would be more than happy to!

Today I want to touch on natural treatments. Now please note that I DO NOT recommend anyone stop their medications, or other treatments. Always ask a doctor before you make any treatment changes. These natural treatments were meant to be added on to your regular regimen to help enhance your current treatment.

The following are natural ways to relieve common side effects and symptoms of

Relaxation and Epilepsy

What are you doing right now? You're obviously on your laptop, computer, iPad, etc... But do you consider this relaxing? Most people do consider browsing the internet a form of relaxation. Little do most Epileptics know, being online is quite the opposite of relaxation for the brain.

If you've driven around your town, you've probably noticed various locations where spas have opened up over the years. If you are anything like I used to be, you are probably wondering if maybe, just maybe, there's something to the whole "spa" idea. You've probably wondered if massages actually do anything for your health, whether it be good or bad.

Graduation Party (So many mixed feelings!)

Hello all,

This past Saturday was my graduation party. I honestly expected it to be a really laid back evening, but it definitely went the opposite way. Don't get me wrong, I had fun - but it was no doubt more work than play. We had it at a pretty nice place called Mi Casa Tamales Restaurant and Cantina.

It was lovely outdoors, but the Texas heat was enough to put anyone in the hospital! I am very glad that it didn't rain. This past Friday I noticed the clouds passing through and I had this overwhelming feeling (and a little bit of a hopeful feeling as well) that it was going to rain. Overwhelming because I thought "It had better not rain at my party!" and hopeful because it is dry as a desert outside!

Half of the party goers came in shorts and t-shirts, and I thought that they must be underdressed. The rest of the party goers and I quickly realized how over-dressed we were. It was so hot, and so sweaty that we were just about to die. Thankfully the restaurant kept the iced tea and ice cold water steady, and the cantina was open throughout the night to keep everyone hydrated with ice cold beers and margaritas.

Everyone claimed they had a lovely night, but I couldn't be more sure that people were bored to death! Probably because I hardly got more than 5 minutes to talk to each table. So many people were invited and so many people showed up unexpectedly throughout the night. It's a good thing that there was enough food to keep most people busy.

I, unfortunately, did not get to taste my party food or eat my party cake until days later. This was a bummer considering I starved the night before and all that day to be able to "pig out". At least Mi Casa Tamales was kind enough to send us home with 4 HUGE to-go boxes of food. And when I say huge, I mean enough to host another party. I've been indulging all day!

Me and my sweet boyfriend Rafael. Ignore how horrible I look in the Texas humidity and heat.

My sister Jessica and her boyfriend Justin about to share a dance

Rafael, Me, My good friend Jocy and her boyfriend

Me and the main party cake which I never got to taste

My party cake up close. Very cute with the school colors :)

Me and my boyfriend (finally) having a good time and dancing!

My mum (far left) and her friend from work with her daughter

My father, who talked the band into letting him play me a few songs! He played a song to me by Eric Clapton called "Wonderful Tonight" that he used to play to me as a little girl. He even substituted my name and I was bawling like a baby. So cute!

 So overall, the night was very memorable and people had a good time. The only issue was that I haven't been sleeping (the insomnia is back) and when I got home I was cranky and very distressed. The depression has been getting me bad lately and I cried until 5 am for no reason whatsoever. I honestly don't consider it actual depression, but I know the stress brought that on.

The night before I had actually had some bad depression issues which lead to me making drastic changes to myself. I hadn't slept and I had decided to cut and color my hair at 5:00 in the morning because I was upset with my appearance.

I have been dropping significant weight these past two weeks. For me, the gaining has been horrible for two years now. No matter how much I diet, the weight piled on. Then, all of the sudden it's just dropping. I stopped getting hungry, and I stopped wanting to eat.

All of these things (cutting hair, changing appearance, no eating, losing weight) was the usual for me back in the days when my stress and depression was at its worst, and I'm surprised I didn't stop myself right then and there. It's just so hard to control sometimes. I think the fact that my seizures are coming back is making it all harder to control as well.

I thank God for having the sweetest boyfriend who was willing to sit up with me and let me cry it all out. I don't think I could have been more blessed to have a wonderful family that organized a great party, and a sweet, loving boyfriend to get me through those hard nights. It's very hard to last all day at a party when you have Epilepsy. Even the smallest things can stress you out.

I raked in a good $600, two beautiful rings, a gorgeous watch and a bracelet from James Avery. Not to mention some nice gift cards and a million sweet congratulations. I'm so glad people loved me enough to come and be with me and that special night. Even if it was stressful at some points, it was worth the memories.

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Well, I hope all is well with my readers and to those with Epilepsy, I hope you have the best of health. God bless everyone and goodnight!

Sincerely,

Mandy Krzywonski

(EpilepsyBlogger)

P.S. - If you want to get on this blog and be a guest writer, please click "Want to get on this blog?" tab at the top of this page. I have a few guest blogs coming soon but the entries are taking a while to be edited and whatnot.

My Guide to Surviving School with Epilepsy

I wanted to post this blog because it is something that has saved my life. If you have read my blog posts before, you know how stressed I have gotten at some points in my life and there's nothing funny about it. People with Epilepsy have unique brains that work very differently from the average non-epileptic brain. You see college kids falling asleep on their text-books after only an hour of studying, but we fall asleep just from our medications. Our neurons are firing at rates that are out of this world, and doing math equations can literally push us overboard. I will admit that there have been times during a class where I have to get up, walk to the bathroom and cry because I feel so frustrated and out of my mind. My epilepsy affects the math and reading side of my brain a little more than all the other areas, which is somewhat why I get so frustrated. I get more seizures during a math class than any other time of day.

Students with Epilepsy need to understand that even if our seizures are controlled, we still have a serious illness in there somewhere. Being young students we are constantly on the go. Whether it's from one end of a campus to the other, or from the computer upstairs to the kitchen for at-home tutoring. Did you know a human can burn 100 calories while just sitting down and studying for one hour? Our brain is actually doing more work than we think. Just as football players need a drink of cold water every 15 minutes of practice, our brains need time to rest and re-charge.

I am a strong-willed Epileptic, and I used to tend to overestimate my health quite often. I had to learn the hard way that stress can cause massive clusters of seizures, especially from studying. But no one else should have to learn the hard way like I did. No doctor ever told me the things I'm about to tell you, and you would wonder why because some of these tips are common sense that we sometimes forget. Luckily for you, I'm going to drill it into your brain so that hopefully you will listen. You will be surprised by the reduction of stress in your life after doing these simple things, accompanied by a reduction of seizures as well.


1. Clean your room/workspace: Obviously your home needs to be kept up with, but you'll find that if you clean it out really really good just once, you wont have much to do after that. All you have to do is a little bit of maintenance. Next time you have an opening in your schedule, clean that messy room and try to get rid of whatever you know deep down inside that you don't need. Maybe it's a stack of outdated magazines, or clothes that you haven't worn in years - get rid of it! If you can, set aside a place in your home or room that is solely for studying and nothing else. This is the place where you can keep your textbooks, school supplies, etc. Maybe use your home desk as this designated study place. Keep a radio or iPod nearby to add a little music to your study sessions. After doing all of this, you will probably feel that your head has been cleaned out as well! Less mess means less cleaning, and more time to do other things in your life. Plus, we all know that it feels better to sleep in a clean room! P.S.- If you feel too tired to clean it all in one day take a break or ask for some help. You don't have to do everything at once. You do not want to overwork yourself because this will create more stress and can trigger more seizures. We don't need that!

2. Use a planner: Whether it's a handy-dandy planner app on your iPhone or a cheap $1.99 planner from the grocery store, get used to using one. Pick one day a week and use that afternoon to sit down and plan your upcoming week. Use this day to make your phone calls to schedule classes, appointments, and other important meetings. Once you plan something, write it in your agenda. Even plan out days when you don't have classes or appointments, such as that Friday night party. That way you will know when to prepare for that event. Even write down "Free Day" when you have a free day. You can get more in-depth and plan out your entire day if you buy a daily planner. This is the type of planner I personally use. Get in the habit of using this planner, editing it, and keep it with you at all times just in case you have a change of plans. The biggest thing you need to use your planner for is writing down assignments. Write down their names, when they are due, and set aside time to study for them. Using a planner will save you the headache when you find out you forgot to write your paper that counts for 60% of your grade. Planners = life savers!

3. Use more than one e-mail account: When I say this, I don't mean go set up 6 e-mail accounts. It is always important to keep your personal life and your professional life separate. Make one account for your friends and family to contact you on, and another for work and school. Some e-mail sites let you set up different folders, and this works as well. Have all of your professor's e-mail addresses saved in case you have questions at home. By having separate folders or e-mail addresses, you can filter out unwanted e-mail, and reduce the chance of being sidetracked by those cute chain letters that our cousins love to send us all day. Get in, get out, and save time.

4. Use the buddy system: We first heard this term in kindergarten when we went on field-trips, but who knew we would still need it later on in life? Try to get at least one phone number and e-mail address of someone in each of your classes. Then, when you're studying at 11:00pm and you get stuck on a question, you have someone to call when your professor can't be reached.

5. Set up study dates: It sounds old-school, but you are more likely to get stuff done when you have help and you are motivated. Keep your study dates up to 3 people, and no more than that. When there are too many people invited, things get too chatty and you'll end up with the same huge pile of homework that you came with. Coffee shops, libraries, hookah bars, and even some restaurants are great places to study. When picking a place to study make sure it is somewhere that isn't too crowded or too loud. Some places will literally kick you out if you are not eating or drinking, so find a place that is student friendly. Usually if you see "We have free wi-fi" on their ads, this means you are free to come and study for as long as you want. Still remember to be polite and buy something to eat or drink since you are using their space. If you are short on cash, study at one another's home or maybe even at a park if it's nice out.

6. Be prepared for all-nighters and disasters (as if they are two different things!): These are the things that you need to always keep handy throughout your day. Try to keep it all in your backpack or purse.

- A pill box with at least two doses of your epilepsy medications, and your emergency medications such as inhalers or your Ativan (to stop seizures).

- Extra pens and pencils. I keep one black pen, one blue pen, one red pen, two pencils, and a highlighter in my bag at all times.

- An emergency $10 or $20 bill. If your credit card bounces, you get in a wreck, or forget your money for food... this will save you. When I had a study date with my friend at a coffee shop my card declined (how embarrassing, right?) and I had bought everyone's drinks "on the house". Luckily, I had my spare $20 and it saved my butt from doing dishes all night.

- Medical ID bracelet or card: If for some reason you have a seizure in public, your friends most likely will always just freak out and call 911. This is sweet, but when a paramedic sees someone having a seizure, it can be for a number of reasons. Investing in a medical ID bracelet or card is important so they can know right away that you have Epilepsy. Some bracelets even have small compartments that you can open and retrieve more information such as your local hospital, blood type, etc. God forbid you forget your actual state ID card, this will really help in an emergency. but try to remember your state ID too!

- Your cell phone... enough said!

7. Make sure everyone knows the deal: If you hang out with them regularly, make sure they know you have Epilepsy. To some it is embarrassing, but it will save your life in the event of a seizure. Tell your friends what your seizures look like, and what to do if you have one. I know that some of my seizures aren't serious enough to have to call the EMS, and several times people have called 911 when they didn't need to. That costs a lot of money, so now I make sure to tell people what's serious and what isn't as serious. My friends know that if I have certain types of seizures, they only need to make sure I'm sitting down and call my parents. Other types of seizures such as Grand Mals need to be dealt with immediately, either by taking my emergency drugs or calling 911. Teachers are probably the ones who need to be informed the most. Take it from me. Every unfortunate time I had a seizure in class, the teachers didn't even know what to do.

8. Make time for yourself: School, work, chores, and whatever else can pile up on you fast, and your body knows it. If you feel your week is too packed, eliminate things that don't need to be done right away. Maybe you have a not-so-important dentist appointment that can easily be moved to next week, or maybe you told a friend that you would go to their birthday party even though you really aren't feeling up to it. You have the choice to control your schedule (at least most of it) so take advantage of that. Make sure you have at least one or two hours each day where you can do whatever you want to do. This should not include studying. This time should be an opportunity for you to talk a walk, enjoy a bubble bath, watch your favorite primetime TV show, or do whatever you think is fun. You could even go out on the town if you feel good enough. If you're sick, get some sleep because people with Epilepsy need extra sleep. Like I said before, studying should have it's owns separate time slot in your schedule. You will find that this will reduce your stress significantly, and you will feel more in control of your schedule.

9. Don't be afraid to be a "quitter": This one applied to #8, but it's more complex. You have to realize that it's okay to say "I quit". Sometimes too much really is too much, and it's important to know that. I recently decided to go on a medical leave of absence from my job because it was simply adding too much stress to my life, and it wasn't leaving me enough time for myself. I'm a student, and my parents can still support me. It isn't necessary for me to work right now. Think about things in your life that aren't necessary, and try to cut them out. It doesn't have to be your job. It could be anything. Maybe you volunteer to babysit for a neighbor even though you don't feel well most of the time, but you feel obligated to do it because they are your friends. Let them know right off the bat. Say "Hey, I haven't been feeling well so I might not be able to babysit as much anymore". You can even tell them you don't want to babysit at all. Like I said, you are in control, not anyone else.

10. Ask for help: Whether it's help with chores, homework, cleaning, or help with anything. Don't be afraid to ask. Sometimes we all need help, and it's a part of life. You have to remember that even though it shouldn't limit you, you do have a serious illness and that too much stress will make it worse. We can still exceed our goals without exceeding our limits. If you spent the last 3 days in the hospital and literally had no time to do any of your schoolwork, tell your professors. Ask if they can pardon a few assignments, or at least give you extra time. Make sure they know how serious your health issues are. Pay your little sister $5 to clean your room if you don't have time. Ask dad to edit your essay if you need to take a rest.

You can get through it, guys. Just remember that it's okay to come first before everything else. Take care of your minds, bodies, souls... and then the rest of the world. God bless!

I Know, I Know... Why Sleep is Vital for Epileptic Teens

I promised my next blog would be tomorrow when my VNS implant got turned on but it's 4:27 in the morning and I can't sleep. I was up writing a paper on Child Abuse and Molestation. That was not the most pleasant topic, and it stressed me out very much. If I could give one tip to all the teenage Epileptics of this world I would say:

"Do not stay up past midnight, especially doing homework."

Why? Well for starters, sleep is key to reducing seizures. The average person needs 6 to 8 hours of sleep a day. Epileptics need extra sleep! So we're lookin' at about 8 to 9. This seemed unhealthy to me at first but my doctor recommended that I would try, and I really benefitted
from just that one small change.


Secondly, schoolwork stresses your brain more than it stresses you out. I think any student can understand this. A brain that is already lacking sleep should not be doing a math review or a 300 word essay.

Lastly, (this one's easy). How the heck are you going to stay awake tomorrow?

I can't begin to tell you how many seizures I've had the day after nights that I didn't go to sleep on time. And they could have all been prevented by catching a few z's. Luckily, I am homeschooled. I say this because someone is always there to take care of me during a seizure. At school I would be screwed because when I was there, none of my teachers knew what to do. I have a schedule just as busy as any other teen... If not more. The only difference is I get to sleep in two hours. I still have classes, and mine are two to three whole hours long. I have tons of doctor visits for my Epilepsy alone... PLUS dentist visits, chiropractor visits, optometrist visits, etc. But everyone needs
their sleep, especially us teens (and people) with Epilepsy. So do what I'm doing right now and get off your cell phones and laptops, turn
off your tvs, close your textbooks, put on your pjs, and get some sleep!!!

Sweet dreams! For real this time!