Your Relationship Questions: Answered!

So since I've started the "Epilepsy, A Love Story" series, I've gotten quite a lot of questions through e-mail from all my readers. Everyone really hoped I would answer them all in video format, but I am a little swamped and frankly not feeling too great right now. So I will answer them, but through the blog. Hope that is okay!

Q: When you and Rafael go out on a date, what are some things that you absolutely wont do? (In order to keep yourself from having seizures)

A: I believe I  mentioned this, but if I'm not feeling good and I have even a slight headache or I'm having a high volume of tiny seizures, we will avoid watching movies... and I mean ANY movie. Not just action movies. I'm talking love stories, dramas, comedies, etc. Why? Because the big bright screen and loud volume absolutely kills me.

Now, the things I'm about to mention aren't necessarily things we've wanted to do. But they are things I can't do: Laser tag, cosmic bowling, going to clubs (strobe lights are awful), and basically anything involving flashing lights or very loud noises. So even concerts are out of the question sometimes. If you read in Rafael's interview, he talked about a show we went to where I got VERY sick. And it wasn't even near being a big concert. It was just a very small location filled with extremely loud music and tons of smoke.

Q: Hiii Mandy! I'm so excited to find your blog! You've been so helpful to me!!! My question for you is... Do you and Rafael get in arguments? I'm guessing you do, because all couples have them. So how do you control yourself and keep from getting too stressed? When I would argue with my ex boyfriend I would have a seizure either the next day or literally on the spot. Keep up the awesome work!

A: Yes, me and Rafael argue. Not constantly, but we've had our ups and downs just like everyone else. I would love to say that I can easily control myself during hard times, but I do have trouble. I am on some meds to help control my anxiety. Not anxiety I was born with - anxiety that my other two medications gave me. However, it doesn't really do its job during times like these, therefore I rely on Rafael to help me calm down.

Rafael and I went through some stressful times recently. It got to the point where my depression started to come back, and my stress levels started to go up. Luckily, I have the best boyfriend a girl could ask for. He came over one day and we were watching a funny movie, and I started to cry out of nowhere uncontrollably. I had been off my anxiety medication for a month, so you could imagine that it was ridiculous crying.

What did he do? Well, for starters, he didn't leave me or yell at me like boyfriends have in the past. He just joked with me, held me, kissed me, wiped my tears and made me smile the best he could. For a while the joking wasn't working, so he helped me fall asleep temporarily to calm me. And when I woke up again he made me laugh like there was no tomorrow.

I do my best to try and control my stress, though. If we ever get in one of those small arguments on the phone or when we're together, I will excuse myself and go to the restroom, take a bubble bath, walk upstairs, or step outside for  a while. I sort of talk myself through it and say "Calm down, Mandy. You'll give yourself a seizure. Make the best of the time you and Rafael have together". Once I am calmed, I will call him back or continue whatever we were doing. I'll say sorry as well, even if it wasn't my fault - simply to end it. In my eyes, it's better to say sorry and get it over with than to anticipate an apology from him that may or may not come. And don't take that the wrong way. It isn't that he's not sorry. He's just one of those boys who doesn't always know what to say. And I know that.

Q: Hey EpilepsyBlogger. I read the love stories, and I loved yours and Rafael's. You guys are my same age, so it helps to read from someone like me. My relationship is the other way around. My boyfriend ******* is the one with Epilepsy, and I am the active girl. I'm in the honor society, volleyball, softball, and track. Constantly doing things. I have always had a hard time understanding him until I read your blog.

I always joke with ******* about his seizures... but I'm always playful. I don't say anything too mean. I'll say stuff like "Don't have a seizure on me!" or I'll make some sort of seizure gesture with him when he's acting silly. I don't mean to hurt his feelings... Do you think I am?

A: That isn't really something that I can answer for him, but I can tell you that sometimes it hurts my feelings when my family or Rafael makes a joke about Epilepsy, seizures, or me having a seizure. Rafael hardly ever makes jokes, and when he does they are VERY small. I know that once in the past, I can remember him making a seizure joke that was just a little too much, and I just stared at him like I wanted him dead. After that, he has never made any sort of joke that was to that extent again.

We do make jokes similar to what you're saying. Those don't bother me all that much, simply because I know that it's all in good fun and he's usually trying to cheer me up. But I would definitely ask your loved one if it is hurting him. You may be upsetting him and not know it. And personally, if you're wondering if you are, that may be your conscience trying to tell you that you've hurt his feelings. Your best bet is to stop, and then apologize if you may have hurt his feelings. Sometimes no jokes are a good thing.

Q: Sometimes I will skip my meds when I am going on a date. They make me really groggy, and I have to take them three times a day, so it's pretty inevitable that I will feel this way during a date. To be honest, I'm embarrassed of how I look and act and I don't want to see the potential love of my life look at me like I'm a weird girl. I want to fully enjoy myself without feeling dizzy, tired, and confused. The only problem is, this results in me having seizures about two to three days after the date. How can I get past this?I love your blog so much and thank you for taking my question, EB!

A: FIRST OF ALL, DON'T EVER SKIP YOUR MEDS under any circumstances. Not only is this dangerous for your seizures, but dangerous for your health in general. Your body is used to this regimen of taking your meds three times a day, just as your heart is used to beating so many times per minute. Take away one beat, and you've got a serious problem. It's the same with your medications, my dear!

Try to plan your dates at different times. I've found that the best thing for me is often to have my dates indoors at my home. Not every parent is okay with this, but with a little explaining, yours might find a way around it. I feel more relaxed at home. I can take my medications on time, and if I feel groggy, I can relax and fall asleep on Rafael while we watch a movie. I wake up half an hour later and we will sometimes decide to go out to dinner or do something more productive.

Try planning dates about two hours after you take your medications. By this time these side effects should wear off. If you can't find time to do this during the week, look to the weekends. Explain to your date that your medicines make you feel a little funky, so you'd rather go out at 5:00 instead of 8:00. If he really likes you, he'll understand.

You can try to reduce the symptoms by drinking more water with your medication, and taking your medication after you eat. This will really get rid of that groggy feeling. Let your doctor know about this problem, as you might be on too high of a dosage.

Q: My girlfriend has Epilepsy, so I related a lot to Rafael. Sometimes I just don't know how to react, but I do my best to watch her symptoms and signs and memorize them. I have never seen her have a dead-on Grand Mal, but what can I do in case this happens? She really hasn't told me what to do in this instance and it's hard to find good help online.

A: I agree - it's hard to find good help online. I have found several websites with bogus information or information that isn't entirely true. Follow this link to find two GREAT seizure charts that you can read and even print out and keep for yourself to memorize. They do a great job at explaining common and uncommon seizures. Good luck and keep up your awesome job and being a great boyfriend!

Q: When is the right time to tell the girl you love that you have Epilepsy? I don't have seizures often, but I want her to know. I wanted to tell her when we first met, but girls have left me because of my illness and I didn't want to tell her. My lack of constant seizures eventually made me forget to tell her completely. 

This week I had a seizure at the mall with my friends, and I wasn't able to text her for two days. None of my friends know her, so no one was able to tell her what was wrong. My parents don't get into my relationship, so they didn't tell her either. I let her know that I was really sick and in bed, and she just kissed me and said "I'm glad you feel better, *****"... But I feel like I'm lying to both her and myself. I love her and it's time that I tell her... but how do I do it?

A: This answer probably sounds horrible... But just do it. Take her out to dinner, invite her over to the house, or call her on the phone. Tell her there's something you want to be truthful about. Explain that it is delicate and hard to explain to most people. (This will avoid upsetting her).

Tell her that she is special to you and since she is special, you know it's time to tell her. Explain your illness. When you were diagnosed, what types of seizures you have, and how to react in case of a seizure. Tell her that it's a very hard thing to admit because so many people turn it into a huge misunderstanding. If she truly cares about you, she will not be upset and she will understand your efforts are kind.

Q: I just started dating this guy named ***. He's very kind, intelligent, and handsome. Everything I want in a guy. I'm so used to going out to movies, but he says that he can't because he is scared he will have a seizure. I personally LOVE seeing movies. Is there a way I can take him to a movie without him having a seizure, or is there an alternative way to watch a movie with him?

A: Honestly, you really have to step back and think about his feelings. You need to respect that movies are one of his major triggers. I can tell it is a major trigger due to the fact that he says he is "scared he will have a seizure". If it wasn't a major trigger, he would have given in by now and he would have gone with you. There are plenty of other fun things out there that you can do, and you can always go see a movie with your friends.

You can ask him if there is a certain type of movie that upsets him. Some people are only sensitive to movies with flashing lights, extremely loud noises, etc. This means that by simply renting a movie and watching it at home, you can avoid a seizure. Ask him if a movie night at home would still bother him. If not, invite him over, rent a movie, and make some popcorn! It's quite simple.

Avoid action-packed movies, as they tend to have more flashing lights and loud noises. 3-D movies are often the worst possible choice as they greatly affect one's vision. The Twilight series has been reported to cause seizures, so stay away from that. Avoid horror movies as they tend to have high pitched screaming, and layered audio - both cause terrible seizures. Many movies will state that people with Epilepsy should not watch. By simply looking up movies ahead of time you can find these warnings.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I hope this has answered all of your questions! If you have more, send them to MandyKrzywonski@Yahoo.com!

Also, don't forget to check out and join my new Epilepsy Online Support Group for ages 12-19!

EpilepsyBlogger's Let's Talk: Epilepsy!