Nine years ago, I was a normal, healthy 19-year-old kid. About two weeks before my 20th birthday, I had my first seizure. I didn't know it then, but my life was going to change forever. I'm turning 29 next month, but I'm sorry to say that seizures are still a major part of who I am.
I've never officially been diagnosed with epilepsy, but I've been to my share of doctors. The problem with my condition though is that I only have seizures when I'm sleeping. So, no doctor wants me to come in and go to sleep, so no doctor has ever seen one of them. I actually had one doctor tell me, "I see some epileptic tendencies here, but you looked like you were falling asleep. It doesn't count."
Eventually, we found one doctor who said that he'd read about this type of condition when in med school. He said it is called "Sleeping Seizures."
Basically, every time I go to sleep, I run the chance of having a seizure. I've had probably hundreds of seizures in the past nine years. I've bitten my tongue so badly that it is shaped like the inside of my teeth now. I'm missing half my taste buds. I even had a seizures at 30,000 ft one time! The flight attendants were ready to die!
This past week, I had four seizures in 24 hours. It pretty much wiped me out and stole this week away. This was the first time that I've ever really thought that I wasn't going to make it. For a while, I was so out of it that I thought I'd already died. This week has been really scary, and I don't know how to help my family. If I die, they're the ones who are going to suffer, and I want to help ease that pain as much as possible.
I have no idea what triggers my seizures, but any advice would be great. I'm scared and don't know what to do.View Thread
Thanks, everyone, for your replies, shared experiences, and the wisdom from going through those experiences.
I'm sorry for taking so long to reply! Internet in China is not something to be taken for granted. It can come and go at a moment's notice.
It is neat to hear your stories. Sometimes, you think that you're the first, last, and only one to experience such things, so I love to hear about others who have been tried and found success.
I was looking for a website to chat on, and I came across this one: http://www.epilepsy.com/connect/chat #. I've been on it twice now, and everyone has been very friendly and welcoming. Maybe we could meet up sometime?
Hawaiian_girl and jstaparent, nice to meet you and thanks for joining our little conversation!
Hawaii, I've never heard of a VEEG. What kind of hospital, when I go back to the States, would I need to go to for that? Any idea on cost? I don't have insurance since I live in China. China doesn't recognize US insurance, so it's not really worth it.
Parent, I'm thrilled for your family that you are seeing results! I hope the best for your son! May I ask, how soon after his injury did the seizures begin?
Ok, thanks for everything, guys! A and C, love you two! You rock! View Thread
Hi Angie and Candi! Once again, thanks you for responses. I'm going to attempt to keep this short-ish, but we'll see.
First, driving. Thank you, Candi, for your concern. I don't blame you, and would probably react the same way in your shoes. However, I'm not actively driving at all right now, so don't worry about that. I don't have a Chinese driver's license, so that isn't a big problem right now. I just have a car in the States, and the thought of never driving that again is a bit sad. (it's a '62 Ford Falcon Ranchero. original bench seat and pre-power steering. gotta love the classics!!) So, I'm not driving right now. As far as the future, I understand how all it takes is one time to hurt yourself and others.
Second, EFA. I'm doubting that there are any of those where I live. I'm in a smaller city in the middle of China. I'm kind of in the middle of nowhere. Seriously, Mt. Everest is not that far away for me!
Third, I don't know about visiting a doctor here. I've been to some around Asia, but Chinese doctors are not known for their good educations. Not being prejudice or anything, just being realistic. Another problem is that I might not be able to get a visa if I am "officially" diagnosed. China is VERY particular about the who, what, when, where, why, and how of their visas. If I got "kicked out," I don't know what I'd do! This is more my home than anywhere! I've been here since 1998!
Lastly, chatting. What websites, if any, do you guys like to use for real-time chatting? China blocked Facebook, so that one is a bit difficult for me. But, I'd love to "meet" both of you in real-time!
Thanks again!!! (if you ever visit China, let me know! i can help you visit and do all kids of stuff!)View Thread
Seriously, you guys are incredible. I wish I had discovered a caring community like this years ago! I can make a promise though that you'll be seeing me around!
I don't know about when I'll be able to get examined, next summer would be the absolute earliest. My job here is not very flexible about just picking up and leaving, not to mention the cost of flights! I am a bit nervous about "admitting," or rather having a doctor confirm, that I'm epileptic. I'm nervous that if I admit it OFFICIALLY then my life is going to be altered beyond recovery. Things like driving are going to be totally out, right? So, in your opinions, is it worth it?
I don't know about absence seizures. I'd never even heard of them, but I'll look into it. How do you explain things that are "off" to a classroom of children? I've muddled through for ten years, yes, but this time was worse than before. I teach about 70 different kids every weekend. Starting last semester, my students began to notice and comment on my memory and concentration problems. I've been teaching since 1998 (I was 12!), and that has never happened until this past spring. How do I maintain control and respect while forgetting even basic things?
Once again, thank you for responding. This has been a TOUGH week, but this website has lessened a bit of that hardship! THANKS!!!View Thread
Thank you, both of you, for your replies. As already mentioned, this is the first time since Day One (almost 10 years now!) that people have taken me seriously or that I've been able to talk to people with similar experiences. It is really nice!
By my nature, I've always been a stubborn, willful personality, so ep was never "in the driver's seat" until this time. Does anyone know what makes one seizure different than another? I have no idea what I look like or do during an episode, as we've never recorded them. I'm kind of afraid to see myself that way, if that makes sense. I remember going online and watching a video of a lion having a seizure. I just sat in front of my computer and cried. Thinking of myself that way isn't easy.
I have noticed another difference with this time(s). I am a bit of an artist. I have been since I was young. However, last night I was trying to draw a picture of a friend's little boy. On an average day, that would be no problem. It would look fine and come together easily. This time, it looked nothing like the kid! Is it possible or typical to lose skills? Is there a way to prevent that in the future?
I've also noticed that my Chinese has been impacted. (I grew up in China, and now I work here as an ESL teacher.) People have needed to repeat questions or sentences over and over this week. I've also noticed myself "missing" words that I KNOW I knew.
What are good ways to help prevent this in the future?
Thank you, guys, for replying. I cannot actually express how touched I am to be able to talk with people who understand! This is incredible!! Thank you!View Thread
Thank you, Candi, for your reply! I'm not a teary-eyed, kind of girl, but I've been so emotional this week! I feel like crying simply because someone out there "gets it" and can relate. (sorry, I'm not normally like that!)
I don't usually sleep with someone. I did when I first started having them. I used a baby monitor and everything, but I eventually put an end to that. My explained to my family that I was going to live my life even if my head was having a civil war up there each night. So, I've been on my own for several years now. Usually, I can tell if I've had one, but this time was really different. I honestly remember almost nothing of this past week. It is like it just flew away.
You mentioned that your seizures wipe you out for a week? How do you cope? Have you ever had a panic attack? Last night, I slept with my mom, but I literally cried myself to sleep. For some reason, I was 500% certain that if I feel asleep, I wouldn't wake up again. In hindsight, of course I did wake up, but that was one of the worst nights of my life. Have any of you had days or evenings like that? How do you deal with it? What about your jobs? What do you do when it impacts your professional life?
I'm sorry if I'm asking "stupid" or beginner questions. I was talking to my mom about my condition, and I feel that we, as a family, have tried to pretend nothing is different for so many years. It is me more than them, but I've refused to acknowledge that I might need to be more careful than "normal" people.View Thread