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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 dpkhandro on Sat, 2013-09-07 - 17:59
Hi there, I am so sorry you were so scared and alone with the seizure event. I am glad you reached out to this community, so you know there are others out here who really do understand, better than your friends, family and even your doctor. I have temporal lobe epilepsy, uncontrolled so far. I had a drivers license and even have had partial seizures while driving. I did not have any accidents, but I was having way too many for me to keep driving, legally speaking. So I lost my drivers license a little over a year ago. It felt devastating because it has changed every aspect of my life. At the same time, there was a trial going on in Denver where this girl was driving and had a seizure. She hit another car head-on and killed a mom and a dad and their two children. The jury acquitted her, but this is something she will have to live with the rest of her life. So I am now working with a new neurologist who discovered that I was on a sub-therapeutic dose of Lyrica. I am gradually increasing the dose to try and reach 400 mg/day. It has drastically cut down on the number of seizure events at 300 mg. We don't know if it will work and if it doesn't he will be sending me to a specialist, an epileptologist to see about maybe surgery. But right now I live with the anxiety of never knowing when another seizure might hit and maybe it will always be too risky for me and those others driving on the road with me for me to drive. I am coming to terms with it and definitely see the wisdom in it. I just get so angry when I see people on the road who are texting and talking on the cell phone, distracted while driving. They are much more likely to cause an accident than I ever was. So bottom line, tell your parents. Epilepsy is isolating enough as it is, and if you were my son, I would want to be there for you. Tell your doctor. Many people with seizures require at least two and sometimes three different medications to get control. (I am also on Keppra) You may be able to retain your license if you promise your physician you won't drive while you are working the medication and lifestyle stuff out. And lastly, a room mate or a seizure alert dog like the one I have might save your life. Best to you as you sort this out.

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

Submitted by idkwhat2do on Sun, 2013-09-08 - 23:04

Hey, thanks so much for sharing your story.

Wow. Considering I've only had a handful of seizures (like 3) in the past several years, really makes me feel whiny for what some  of you have to endure. That's why I look up to you all. I don't feel like I have epilepsy. I have it so rarely that I feel like I just have a seizure sometimes and I get unlucky, especially with the absence of myoclonic jerks.

Look at it this way. The amount of courage you have on a day to day basis facing your setback is unbelievable, and even beautiful. You are a hero to me. I have one seizure after like a year or so of complete absence of anything, and I, a big 19 year old boy with a job and college, sit there and ball like a baby in fear. I thank you for reaching out. It gives me hope....something nobody else can give me in terms of this alone. And that means the world.

I hope the Lyrica works out for you. And I look at people the same way on the road who are texting or using their phone. Not just because of my condition, but because it is pathetically dangerous and sad.

I'm rarely alone. I forgot why my brother wasn't home, but I just happened to be alone that morning when I woke up on the floor in a pool of blood. Absolutely terrifying incident. I still haven't told anyone, but I desperately want to. My mom found a giant knot on the back of my head (must've hit my head on the dresser on the way down) and I denied knowing where it came from, and let me tell you. Nothing is worse than lying to my parents. Especially after all they've done for me. Very frustrating.

Thank you so much. best of luck to you as well. Thank you for reaching out. It means the world. <3

Hey, thanks so much for sharing your story.

Wow. Considering I've only had a handful of seizures (like 3) in the past several years, really makes me feel whiny for what some  of you have to endure. That's why I look up to you all. I don't feel like I have epilepsy. I have it so rarely that I feel like I just have a seizure sometimes and I get unlucky, especially with the absence of myoclonic jerks.

Look at it this way. The amount of courage you have on a day to day basis facing your setback is unbelievable, and even beautiful. You are a hero to me. I have one seizure after like a year or so of complete absence of anything, and I, a big 19 year old boy with a job and college, sit there and ball like a baby in fear. I thank you for reaching out. It gives me hope....something nobody else can give me in terms of this alone. And that means the world.

I hope the Lyrica works out for you. And I look at people the same way on the road who are texting or using their phone. Not just because of my condition, but because it is pathetically dangerous and sad.

I'm rarely alone. I forgot why my brother wasn't home, but I just happened to be alone that morning when I woke up on the floor in a pool of blood. Absolutely terrifying incident. I still haven't told anyone, but I desperately want to. My mom found a giant knot on the back of my head (must've hit my head on the dresser on the way down) and I denied knowing where it came from, and let me tell you. Nothing is worse than lying to my parents. Especially after all they've done for me. Very frustrating.

Thank you so much. best of luck to you as well. Thank you for reaching out. It means the world. <3

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

Submitted by hereIgoagainzach on Sun, 2013-09-15 - 00:05
hey there my name is Zach and Im 32 year old man with seizures also. I find it especially hard when the state wont help you and all they say is to get your butt back to work, not that I mind working at all its just not the easiest going from job to job every few months that I might have one myself. a lot of bosses wont understand after you have one and your trying to explain it to them, just about every one Ive worked at just tell me to get lost and go home. hopefully you have them under control enough to be able to work and everything I know how hard it is myself, ive been going though it myself for about 20 years now, you'll find out alcohol doesn't work well with your meds, at lest not with mine and had to give that up cold turkey. I can only say it sucks also and tell people I woundn't wish it on my worst enemy too. I just had on last weekend and trying to go back to work was hell, my best advice for you is to let them know about it because for me I like to say my whole slate just got cleaned off and have to start from scratch all over again trying to remember what kind of person you are and everything will take some time so just let them know. sorry to say but holding on to a job will be very hard at lest it is for me seems like just about every 3 months Im looking for a new job. I guess I try to say I just try to live a very simple life and try to find the best of it, one of my best things to say to you is you and me can take a whole different vacation then any one else will ever know about unless they have seizures also, sometimes I can find it kind of nice to get away from reality once in awhile so that's my way to put the bad with the good. just so you know I have found out awhole lot about epilepsy and done a lot of research so please feel free to chat and know every one here is on the same team and the more you learn about the epilepsy the easier it just may be to live a normal life.

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