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Please Give me Advice.... Just had a seizure

Fri, 09/06/2013 - 10:14

Hey guys,

I'm here because I seriously have no clue what to do and I just completely feel alone. Sitting here balling my eyes out out of complete fear.

I'm a 19 year old guy. I have Juvenile Myoclonic Epilepsy. I've had seizures since I was born. Ever since 2008, they slowed down tremendously. (JME is a very mild form of epilepsy).

 My last seizure was about a year ago, and judging by how badly my tongue was torn to pieces, it was a pretty serious one. Whenever I have a seizure, it's always grand mal. And it's pretty bad. I had it at about 2 am, and I fell through a wall.

Anyways, I think I just had another seizure. I woke up around 7 with mild twitches and just fell back asleep. I just woke up on the ground in a pool of blood. My body doesn't hurt, but I bit my tongue and I'm 99% sure I just had one.

I took my medication this morning, and I've been drinking water and trying to eat. Here's the thing; I pretty much live on my own. I'm seriously opposed to telling my doctor that I had another seizure. I'm terrified. He said he would take away my license if I had another one. I'm very independant. My license is my LIFELINE. I can't tell my parents or friends because they'll flip out and honestly I don't want to put my mother through that..

What should I do?  I don't know I guess I just want to talk to/hear from people. This is the absolute worst feeling in the world. I wouldn't wish it on my worst enemy.

Comments

Re: Please Give me Advice.... Just had a seizure

Submitted by idkwhat2do on Fri, 2013-09-06 - 14:07

Wow it feels so much better to have outside opinions about the matter, thank you so much for everything.

I just slept for an extra two and a half hours and I feel so much better. Now I'm just starving. haha.

So your son is 15 years old? Awesome, my brother is 15 years old. He just started driving with his learner's permit and I guide him a lot with that. I'll just get him to go out with me and grab some food later. Unforunately, cabs are not an option in my small town. I do plan on moving to a big city next Fall, so I will take advantage of that. Great idea.

I was almost 15 when I had my worst seizure (with no oxygen for 7+ minutes) and I remember how hopeless I felt. If you ever talk to your son about me, tell him I'm in a program to become either a software engineer or an IT systems manager for Homeland Security or the CIA. Right now I'm an intern for an IT department and I love it. I'm doing great in college, I never drink or smoke or party, and I consider myself a somewhat successful drummer. JME has done ANYTHING but hold me back. It has, in fact, pushed me forward. And other than today, it never bothers me, and taking meds is generally not a problem, I just somehow forgot.

Video games are a love of mine as well, I use to be SO upset that I couldn't stay up all night playing video games anymore. Then I grew up and realized that doesn't matter..at all. Hahaha. If he's frustrated now, he will only get better. I still play tons of video games, I only usually get tired around 1 am and sleep in the next day. Staying up late is getting tougher, thankfully :P

 Also, what medication does he take? I take 1000mg of Keppra every night, and (when I remember to take it) I never have a twitch, I never have a seizure, and I have experienced exactly no side effects. It's an amazing drug and if he's taking depakote or something and having problems, I HIGHLY recommend switching.

 Thanks so much for the encouragement. I never considered the disabilities office at college, if it comes up I will definitely pay them a visit. This is exactly what I needed, some great advice from someone who knows what they're dealing with. It means so much, thank you.

 I will stay subscribed to this and check it periodically throughout the day. Thank you.

Wow it feels so much better to have outside opinions about the matter, thank you so much for everything.

I just slept for an extra two and a half hours and I feel so much better. Now I'm just starving. haha.

So your son is 15 years old? Awesome, my brother is 15 years old. He just started driving with his learner's permit and I guide him a lot with that. I'll just get him to go out with me and grab some food later. Unforunately, cabs are not an option in my small town. I do plan on moving to a big city next Fall, so I will take advantage of that. Great idea.

I was almost 15 when I had my worst seizure (with no oxygen for 7+ minutes) and I remember how hopeless I felt. If you ever talk to your son about me, tell him I'm in a program to become either a software engineer or an IT systems manager for Homeland Security or the CIA. Right now I'm an intern for an IT department and I love it. I'm doing great in college, I never drink or smoke or party, and I consider myself a somewhat successful drummer. JME has done ANYTHING but hold me back. It has, in fact, pushed me forward. And other than today, it never bothers me, and taking meds is generally not a problem, I just somehow forgot.

Video games are a love of mine as well, I use to be SO upset that I couldn't stay up all night playing video games anymore. Then I grew up and realized that doesn't matter..at all. Hahaha. If he's frustrated now, he will only get better. I still play tons of video games, I only usually get tired around 1 am and sleep in the next day. Staying up late is getting tougher, thankfully :P

 Also, what medication does he take? I take 1000mg of Keppra every night, and (when I remember to take it) I never have a twitch, I never have a seizure, and I have experienced exactly no side effects. It's an amazing drug and if he's taking depakote or something and having problems, I HIGHLY recommend switching.

 Thanks so much for the encouragement. I never considered the disabilities office at college, if it comes up I will definitely pay them a visit. This is exactly what I needed, some great advice from someone who knows what they're dealing with. It means so much, thank you.

 I will stay subscribed to this and check it periodically throughout the day. Thank you.

Re: Please Give me Advice.... Just had a seizure

Submitted by Masterjen on Fri, 2013-09-06 - 14:26

Hi, I had some thoughts about your situation and what on poster said about the lowering of seizure thresholds.  Perhaps that is what is going on, and you may help prevent yourself from going into a full seizure by getting to bed earlier.  Perhaps before you could handle going to bed at 1 and 2 AM, but not with the lower seizure threshold.  As for the exercise, same thing.  Your seizure threshold is lower, so you are less able to tolerate a strenuous work-out.  And thirdly, the lower seizure threshold means you are less able to tolerate a missed medication dose.  So: earlier to bed, setting alarms to remind you to take your medication (as one poster already mentioned), and returning to your previous exercise routine may be all the prevention you need to avoid a stronger seizure.  Once you are on a better sleep routine, then work on a slow increase in your exercise intensity. 

As for telling your parents and doctor about the stronger seizure, they do need to know.  But by all means say you had a rediculously late night, exercised too hard that day, and forgot a medication dose. Also say you would never consider driving under these circumstances, whether or not you had a seizure (I assume this is correct - hint, hint).  They might see beyond the need to take your lisence away, and the doctor - realizing all these factors - might simply increase the medication dose if you (or your parents) request it because "situations like this do happen sometimes".  Stress you would never drive post-seizure, nor would you drive if you realized you missed a medication dose, or pulled an all-nighter and KEEP this promise.

Hi, I had some thoughts about your situation and what on poster said about the lowering of seizure thresholds.  Perhaps that is what is going on, and you may help prevent yourself from going into a full seizure by getting to bed earlier.  Perhaps before you could handle going to bed at 1 and 2 AM, but not with the lower seizure threshold.  As for the exercise, same thing.  Your seizure threshold is lower, so you are less able to tolerate a strenuous work-out.  And thirdly, the lower seizure threshold means you are less able to tolerate a missed medication dose.  So: earlier to bed, setting alarms to remind you to take your medication (as one poster already mentioned), and returning to your previous exercise routine may be all the prevention you need to avoid a stronger seizure.  Once you are on a better sleep routine, then work on a slow increase in your exercise intensity. 

As for telling your parents and doctor about the stronger seizure, they do need to know.  But by all means say you had a rediculously late night, exercised too hard that day, and forgot a medication dose. Also say you would never consider driving under these circumstances, whether or not you had a seizure (I assume this is correct - hint, hint).  They might see beyond the need to take your lisence away, and the doctor - realizing all these factors - might simply increase the medication dose if you (or your parents) request it because "situations like this do happen sometimes".  Stress you would never drive post-seizure, nor would you drive if you realized you missed a medication dose, or pulled an all-nighter and KEEP this promise.

Re: Please Give me Advice.... Just had a seizure

Submitted by idkwhat2do on Fri, 2013-09-06 - 15:36

Hey, thank you so much for the input. I'm definitely going to be getting plenty of sleep for the next few days. At least 8 hours. This scared the crap out of me.

I have been doing crossfit for a couple months now, 5 days a week. It's an extremely intense workout and I guess I'll have to cut back on that, as much as I HATE that. I've lost 20 pounds and put on all kinds of muscle. I don't think I could ever stop, but I'll take it easy and ease back into it.

I will also set an alarm. I almost never forget my dose. There are times I have that I have woken up completely twitch free and fine, but as I always take it the next morning. It's hard for me to forget.

As for the doctor and my parents, I'll need to think of a way to word it. Not driving is a huge setback for me, but I don't want to take any serious risks....

I will keep in mind everything you said. Thank you.

Hey, thank you so much for the input. I'm definitely going to be getting plenty of sleep for the next few days. At least 8 hours. This scared the crap out of me.

I have been doing crossfit for a couple months now, 5 days a week. It's an extremely intense workout and I guess I'll have to cut back on that, as much as I HATE that. I've lost 20 pounds and put on all kinds of muscle. I don't think I could ever stop, but I'll take it easy and ease back into it.

I will also set an alarm. I almost never forget my dose. There are times I have that I have woken up completely twitch free and fine, but as I always take it the next morning. It's hard for me to forget.

As for the doctor and my parents, I'll need to think of a way to word it. Not driving is a huge setback for me, but I don't want to take any serious risks....

I will keep in mind everything you said. Thank you.

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