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idkwhat2do

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

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

Sorry for the double post, but I just wanted to say you guys that have seizures frequently and carry on with your lives are just amazing to me. I'm not quite that strong. The slightest threat to my life/independance just scares the everything out of me. I literally feel like I just died. I also woke up not knowing what day it is, what I did last night, where I was, or who exactly I was. Took me about 10 minutes to get my bearings together.....ugh so terrifying.

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

Yes, you are strong... And there is nothing to fear but fear itself. Being confused is normal after having a seizure. The good news is that 10 minutes is not bad at all to regain full consciousness, some people take hours, if not days. Your independence will not be threatened if your seizures are properly controlled and that cannot be achieved unless your neuro adjusts the med/dosage combo. Please tell mom and dad, they will love to help you am sure. I hope you feel better and remember, we are all here in the same boat. Chin up! Best wishes.

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

Thank you thank you thank you....

What I think I'm going to do is tell them about the twitches, since I had those this morning. The doctor won't take away my license and I'll go up on my dosage (that's what he told me if I had twitches again). If I have another one, then I'll tell my parents, because I am not trying to die and leave them clueless.

 It's so incredibly frustrating. I almost made it a full year with no seizures. There really is nothing worse.

Good luck to you and your son.

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

Hi - I've been reading these posts for many months, but this is the first time I felt I needed to write a reply.  My epilepsy had been in remission, with medication, for nearly 4 years. Then I had a seizure this year while moving, stress-related no doubt. After getting my dosage increased I went about 4 months seizure-free and felt I could safely drive again. (In my state I am supposed to wait 6 months.)

I started driving myself to work again, but the first day I did, I had the worst seizure ever for me, and ran off the road, through ditches, etc. while unconcious. By the amount of damage to the vehicle, it appeared the air bag saved my life. That was my third accident caused by a seizure while driving. (I was first diagnosed following a crash, and the second was after no seizures for 6 months.)

I was so very lucky; no other vehicles were ever involved, and my own injuries have been minor. BUT I WILL NEVER PUSH MY LUCK AGAIN! I realize I could have been killed, or worse, killed someone else. It's just not worth the risk. I was always very independent as well. In fact, I was (and still am) a person who helps others. It was very difficult to reach out to others for help, like driving me to work every day, to the grocery store, and everywhere else. But you know what? Those I asked were more than happy to help, and some have gone way above and beyond. Talk to your family and friends; you may be just as surprised as I was at how helpful they want to be, given the opportunity.

Best of luck to you and to all of us! Good to know none of us has to muddle through it all alone!

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

Hey Kat313, thank you so much for telling me about your story. To me, that is just.....holy crap. I'm so glad you're okay.

There was a man that my dad knew that had epilepsy, and had it bad. He lost his license. However, one day, he felt the need to drive (I forgot why). The one day he did, he ran into oncoming traffic on the highway (going 55mph) and killed another man, as well as himself. Absolutely horrifying. You're so lucky and I'm so glad you're okay. I can't imagine. That really puts it in perspective. I had forgotten about that story it happened so long ago.

How long have you been seizure free now? I hope it's gotten better. And seriously, I look up to people like you. I have the mildest form and it's just one of the worst things to ever happen to me. You are a very strong person. What medication do you take?

 Thanks for sharing that, I greatly appreciate it. Good luck  to you.

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

Hey thanks for writing back. Glad my message brought that story back to mind. As horrible as it is, it serves as a very important warning.

I've been seizure-free 3 weeks and 3 days (but who's counting, right? LOL) I've been back to work for the 3 days, and so far, so good. Of course I am not driving; a dear friend brings me here and takes me home. I definitely do not think of myself as a strong person, just a survivor (also had a small stroke 2 months ago, and am being treated for high blood pressure and long-standing major depression - I am 53. Old to you, I know, but much too young for all this to be going on.)

I currently take Carbamazapine, which I have taken many years, and Vimpat, which is a new add-on for me. It took a few years and working with my doctors to find the right meds; I tried over a dozen, and in various combinations since diagnosed in 2004. The disease changes with time, and medications must be adjusted as well. A good neurologist makes all the difference.

Take care and hang in there. It will get easier with time and support. We're all here for you!

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

I am sorry that you have experienced this. It is time to adjust your medication dosage. That cannot be done unless you tell your doctor. I understand your apprehension, but realize that your own personal safety is in jeopardy. People build tolerance to their meds over time and relapse of seizures can occur. As you know, when your seizure threshold goes down, the seizure count goes up. What have you done differenty? Drugs, alcohol, stress, partying, sickness, travel, fatigue, new exercise routine? See what your trigger was.

You are Not alone. You have your parents and they need to know. My son has Jme too, you are NOT alone. This must be terrifying and as a mom of a teenage son with Jme, I urge you to open up to your parents about this. Think about how lucky you are to have been in remission for a year. Now it is time to adjust your medication, if not the chances of relapse are higher and I am sure that you don't want that experience again, especially behind the wheel.

Ask mom and dad for advice, it will Be OK I promise. Best wishes!

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

Thanks so much for the advice. Hopefully I'll bring myself to tell them. I just can't imagine what I'd do without my license.

I haven't really done anything differently. I don't use drugs and I don't drink, at all. Stress really isn't that bad this semester, I don't go to parties, haven't been sick, haven't traveled in forever.. I have adopted a new excercise routine over the past two months (it's pretty strenuous, and it's 5 days a week) but I don't think that's it.

With my past seizures, my doctor told me it was lack of sleep that's my trigger. I used to consistently have twitches (before my medication) almost every morning that I'd stay up to 1-2am. Last night I stayed up to about 2, but I've been doing that most weekends, while getting great sleep during the week.

I guess you're right, it sounds like I need to up the dosage. Just have to bring myself to tell my parents. It's gonna be very tough to do that and I don't know if I can. But thank you.

As for your son, if he's ever worried, tell him it's gonna be alright. I carry out a perfectly normal and successful life with JME. I feel better having talked to you. JME is the mildest form of this and me and him are both very lucky. However, do not threaten about him losing his license if you want him to always tell you if something's wrong. For a teen guy, my car is one of my favorite things ever and I drive a lot.  The problem for me was my dad told me he was taking me to the doctor next time it happened and I've been terrified.

One more thing, I think I forgot to take my meds last night, now that I'm starting to get my memory back. If so then that combined with a late night was definitely the problem.

I don't know. It's just horribly terrifying. It literally feels like you have died when you wake up. One time I had a grand mal at my friend's house, the paramedics told me that I stopped breathing for 7 minutes and that I probably would not have made it if they weren't there. That, to me, that fear, is hell on earth.

Thank you so much. And please please please be very open, kind, and non-threatening to your son about his seizures. I absolutely hate this situation. If your son has any questions about JME/needs someone to talk to, I'll be glad to help.

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

Thank you for replying and for advising me about my son. He is 15 and doesn't drive yet, so he isn't missing anything yet. He is in drivers Ed in school now as part of his health class (he is 15) and I told him about the law about his condition. He has only had one seizure 6 months ago and one episode of the myoclonic jerks before that after an all nighter of video games. Sleep deprivation is also his trigger.

I am glad that you figured out that you or got to take your pill and that in conjunction with a late nighter ( big no no! ) made this happen. I think is a good idea to tell mom about the twitches and go with that for now. Please also know that your dad is trying to protect you, not punish you. I definetely appreciate the advice about how to approach certain subjects with him about his condition. It is really helpful to hear about one one that can relate what he is going through because I don't know and I am trying to do my best. Thank you for sharing about your happy, productive life, I am sure my son will appreciate hearing that because he dreams about going to college and becoming an engineer.

For now, please have some rest and set an alarm on your phone for your pills. Call home and talk about the twitches and see what is her best advice. Please know that the twitches sometimes can be the warning sign of a tc coming. I did nor know this, until caught me completely off guard that he was twitching but talking and walking and a second later blue and not breathing, so I know what you mean. Luckily most seizures are self resolving, but do please adjust your lifestyle and see about med adjustment because you do not want the seizure count o get worse or more prolonged. You are very lucky to snap back to normal, and o lucky to have a mom and a dad that will do anything to help you. May I suggest to take a cab today and stay in for the weekend? No one eres on being extra cautious. I know my on after having the tc he was back to his own self, but he was tired and a littler "spacey" for a few days afterward, so if you care to listen to someone else's mom, take a cab until you feel better. Do not drive today at the very least.

Last, colleges have offices for students with disabilities (I know, I know) use them! They can help you turn in papers later while you recover if that is necessary. Also, you can pick classes before anyone else to avoid the early ones and give extra time if you ever need it. Having epilepsy is nothing to be ashamed of and you are doing a great job, your parents have also done a fine job, now please do the responsible thing, I know your parents taught you right and sometimes at 19 one may think that you know better, I should now as I was 19 ones and thought my parents were mean idiots. Best wishes! Feel better and keep the communication open. I will take the liberty to ask how are you feeling later.,

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

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

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

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.

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

Hello, I just saw your story, very sorry to hear that. what kind of medicine you take? only one medicine or medicine combination?  some seizure need few medicine work together, this is very commen in seizure controling,  once you take medicine dont forgot , take everyday, to keep medicine level balance in blood, this will help stop seizure,,,

some patients can control seizure for few years ,  then began to less medicine, not suddenly stop, need step by step . suddenly stop medicine can cause constant seizure ,very dangerous,..

also dont stay very late, get enough sleep, everytime after seizure ,the brain lack of oxygen , feel sleepy, enough sleep is best way to help,,

would you mind tell me which medicine you take? in fact there over 60 type of epilepsy , they use different medicine ..

hope this will help you ,,,,before i work in epilepsy hospital for 10years, i can help you consule our experter , he devote his whole life in epilepsy field,,

god bless you

linda

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

Thank you SO much for the offer Linda. Wow. That's amazing. You're a great person.

I take 1000mg of Keppra XR every night. I rarely miss a dose. I was actually myoclonic-jerk and seizure free for such a long time that my doctor recommended dropping the dosage in half, but I declined greatly, as tonic-clonic seizures are way too scary to risk having while I'm driving, or anything. I never want to experience one again, although I know the reality may be otherwise..

After I posted this on Friday, I went straight back to bed. I felt a hundred times better when I woke back up. You're right.

Another thing worth noting is how well Keppra XR worked. Before I took Keppra, I had myoclonic jerks EVERY morning, but I never had a seizure until 2008. I actually thought they were completely normal for people to have (I know, weird). I woke myself up every morning for school, so my parents never saw them, until my brother woke me up one weekend, and starting screaming when I started jerking. That's when I was taken straight to the hospital, diagnosed weeks later, and put on Keppra XR. When I do not miss a dose, I experience NOTHING. No jerks, no fatigue, no seizures, nothing. EVERY instance I've had a seizure, I've missed a dose (except for one time, which I think was stress-related). 

 
I refused to take Depakote, because I value my physical health and did not want to put on weight. Keppra XR has been working wonders. It's a bit of a miracle drug for me.

 

Thanks for your help Linda, and God bless you too. 

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

Hi

I just read your post. It seems like you are kinda stuck between a rock and a hard place. I have had grand mal seizures and during those they use to say you can bite your tongue. If you fall and hit your head which can and does happen your mouth can slam shut and that action can cut your tongue rather than just biting it. THat said  I also understand that you have gone a period of time without a seizure. I have done that before and the period of time was great. But I also know what it's like having a seizure after going 3 years without one. As for your drivers licesne being your life line. You do need to look at things differently. I will be 63 next month and have NEVER had a license. I still worked got where I needed to go did everythig my friends did. Having seizures does not stop your life. You may limit yourself but you are the one that sets your limits.

A good question to ask yourself is --- How would you feel if you were driving and had a seizure which caused a wreck that killed someone??? Think about it some. There are big reasons why you might lose your license. But that doesn't mean you will not get it back. Check out your state laws. Most states have a period of time without seizures and those times have been reduced into partial years. I kow thsi because I was studying for my license andn back then it was 2 years. If somebody loses their concenteration for a second the ycan and do have accidents. My seizures today are seconds in length compared to mnutes a few years ago.Understand I have many types of seizures. I haven't had a convulsive seizure since 1973 but I still have absence seizures, partial seizures, complex partial seizures,generalized seizures,tonic clonic seizures which can move into a focal motor seizure which look like grand mal seizures the differeence being I am aware of everything happening. I see, hear and understand what is happening I just can't control what is happening.

Try checking out public transportation

Ever think of a room mate??

I hope this helps

Joe

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

Joe,

Thank you for reaching out.

Yeah after finding a huge knot on the back of my head, I believe the falling from the bed to the floor involved hitting my head on the dresser, which could have contributed to biting my tongue. It's still swollen, even tonight. 

After that night I have made a reminder to always take my medication. I did not drive that day, and I did a lot of thinking. The fact that I can take someone's life one morning on the way to school or work is completely devastating.... I don't know what to say other than I beat myself up for still wanting to drive. I could not stand making my parents/friends pull another favor for me. You're definitely a hero to me, being 62 and not letting it take control of your life.

Our small town has 2 buses, none of which come close to my house. I really hope to move to a big city with a girlfriend/roomate for the next Fall. That would help a lot. I did recently have a girlfriend who was willing to help, but we got in a fight and I broke up with her, and she ended up using JME to embarass me. After her new boyfriend tried to taunt me I kicked his ass, but, the emotional damage of broken loyalty is still there..

EVERY thing helps Joe. Thank you SO much.

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

your very welcome

Well living in a larger city will help getting to and from places. As for seizures and medications.

Depending on how many times you take them a day would not require much. I have mine BID morning and night. Ifyou take yours like that then what might also help is taking them 12 hours apart. I take mine at 8 in the morning and 8 at night. When I was taking them 3 times a day they were taken every 7 hours. I had a watch which had an alarm and that would go off and I knew it was pill time. There ar all kinds of things that can be bought to carry them in I have a little one which I put my night pills in and carry it with me if I am out or might not be home when it is pills time

There are more medication being worked on which have fewer side effects and they are also shortening hte time in the seizure and the time to focus (get back to normal). Not having a convulsion since 1973 is a good thing but I have several names of seizures and a lot of types of seizures land under those names. My partial seizures went from minutes to seconds in the seizure and focus time went from 15-30 minutes to 1-5 minutes. 

If you ar considerin moving to a city you might want to have your neuro give you names of neurologists in the city you are moving to. I sat that because I want my doctors being able to see all my medical records and the tests that have been done along with the medications I have been on. Doctors can and do send medical files back and forth. My PCP sends my files to my neuro and back and forth. My cardiologist was recommended by my PCP so they send information about me and my case back and forth.

girlfriends or room mates can help. You can get out and instead of diving you fill the tank with gas.HEY that how I got to and from work they drove and I bought gas now and then especially when the person I was friends with lived right down th street he had to go my way anyway so now and then I paid something for gas. Oh I alwas had coffee for him and now and then he had a can of coffee for me.Considering the rents and grocery bills would be split along with other bills. I also buy larger packages of things and split them into smaller amounts. When you buy hamburger you can buy 5 lbs sheaper than 1-2. I getthe 5 lbs and make 1/4 lb patties and freze them so if I need 1 lb I get 4 patties. Sometimes I see hind quarters of chicken which contain 4 hind quarters which if split up would be 2 meals simce I have my better half to feed too.

Hope this helps

Joe

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

Thanks Joe, very helpful yet again. It seems like you have some very supportive friends that really helped you out. All of my reliable friends are off at their respective colleges now, or moved away, so hopefully we'll move closer again or I'll make a bunch of new friends. When it gets down to it, I don't want to put people in harms way of my disorder.

I like that system of buying gas and exchanging favors. I seriously hope I can find someone like that to help me out. Now would be a good time for a reliable girlfriend or something. hahaha.

My neuro put me on Keppra XR (or extended release) so that I could take them once at night. My seizure threshold is always lowest in the morning, so that way my blood is ready every morning. 1000mg has been controlling it very well so far, I just wish I never forgot a dose. 

Thanks for all your advice Joe. I would type more but I'm rushing to finish my homework as well hahaha. Thank you so much. Even the slightest bit of help means the world to me.

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

it's me again

Your comment  "I just wish I never forgot a dose" make me think some people today aren't thinking or using common sense at times. there are watches with alarms in them My nokia 6010 has an alarm which can also be used and thre are some real cheap alarm clocks which can be used the take you pill every day at the same time. About 12 years ago I was taking keppra 3 times a day so I used my watch. I also set a timer up on my computer at work so my medication was taken on time. I might add that keppra ahd been controlling my seizures well but I still had partial seizures. Doc and I discussed the issue and he wanted me to add vimpat 100mg 2 times a day and since it was added the seizures have gone down. We are in the process of changinf the dosage to 150mg and that 2 has reduced the seizures. If you still ahve those twitches you might ask your neuro if adding anotherr medication would help.

There are a lot of medications today that can be added which work on certain seizures and I know thehre are several that can and have been added with keppra which has gotten peoples seizure count down and in some cases they have been without seizures for awhile.

hope you get the assistance you need and do get you an alarm either a clock watch or even your cell phone

Later

Joe

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

I have had tonic-clonic seizures since birth and absence seizures since I entered my teenage years. I am now 52. I have taken so many combinations of medications, I think I've gone thru the PDR as far as anticonvulsive medications go. At the moment, I am taking Zonegran BID, Lamictal BID, and Clonazepam BID for the seizures. I am only having the petit mal seizures but have had to surrender my driver's licence since my children were born over 20 yrs. ago. I was in a one car accident(thankfully) my son and I weren't hurt. I got a few facial cuts but he was in his car seat in the back seat so wasn't injured.

I just wish I was in an area where we had a regular bus system, but still manage to get to appointments.

Please speak to your doctor and keep a journal of your seizures. Keep an alarm on your watch or phone as when to take your medicines. I am terrible forgetting my meds, so I am speaking from experience.

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

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

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

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.

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

Hey Zach, thanks for sharing your story man. I have to say I'm humbled by your will to carry on will epilepsy like that.

I have juvenile myoclonic epilepsy, so mine is very well controlled. I'm only 19, so I'm still in college, but I've had a job ever since my 18th birthday, and thankfully I've never had a seizure there. I only have my seizures in the morning right when I wake up. I've only had probably 3 since 2008.

But your advice is great advice...when I get out of college I definitely do need to tell my employer just in case I suppose. My plan is to start my own company, which would be amazing. 

I'm sad to hear about your employers though. Man, only we can understand that you've been to hell and back several times, and that you know what the definition of fear can be. I look up to you, good for you consistently trying to work and find a job. The fact that you're not just pulling unemployment shows that you're a VERY decent person with a strong will. People like that are rare. I hope I can have that will someday.

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

Hi,I am 22 and have epilepsy from childhood.

I had many types of epilepsy-childhood absence seizures,grand mal and other. I can loss consciouness may not. May feel seizure coming may not. I had operation,but seizures came back!

I want to tell that epilepsy isn''t a simple illness that's why you must give your doctor all information you have. May become harder or may be late to do something with treatment!

Some time ago I though like you. Relatives every time worring about us. But if you wont tell any one about your problem in crisis situation you my not receive help or adequate help.

About social life I understand your thoughts, but without healts you will have no need in a lot of things! Friends if they are such will stay in any your life situation!

Be not afraid of seizures! Take a fight withthem!

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

Hi,I am 22 and have epilepsy from childhood.

I had many types of epilepsy-childhood absence seizures,grand mal and other. I can loss consciouness may not. May feel seizure coming may not. I had operation,but seizures came back!

I want to tell that epilepsy isn''t a simple illness that's why you must give your doctor all information you have. May become harder or may be late to do something with treatment!

Some time ago I though like you. Relatives every time worring about us. But if you wont tell any one about your problem in crisis situation you my not receive help or adequate help.

About social life I understand your thoughts, but without healts you will have no need in a lot of things! Friends if they are such will stay in any your life situation!

Be not afraid of seizures! Take a fight withthem!

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

Hi again, great to know that you are feeling better and that you have reflected on the consequences of driving following a seizure. Good for you that you refrained from driving that day, please listen to your body in the days/ weeks to follow.
Thank you for writing about your job and your college and your dreams and how JME has pushed you forward. I will tell him about you and how his dreams are totally achievable, and you are that example that we needed.

He takes Keppra 500 mg twice a day, so the same dosage as yours minus the extended release. You only take one pill once a day? That would really help in our case as I am constantly reminding him of taking his medication. In his defense, we just started to deal with this 7 months ago. He has been seizure for those same 7 precious months. I have to find a new neuro as we recently moved, I am afraid yet excited to have someone else looking at his records. Previous neuro thinks he can get over it, who knows what the new one will think.

As I side note, I am so mad about the mean ex gf of yours. That is why we have not told a soul about my sons condition for fear that people would be stupid like that. I do not want his self esteem to suffer, he is a confident, happy, well adjusted kid, but I can tell he is terrified od epilepsy. We have not touched the subject in a while, but when we do, it is not gloom and doom, more like a cold lol!

Anyway, best wishes.

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

Hi,

You've gotten a ton of great advice here, and it looks like you're going to find a way to talk to your family and your doctor. That's both difficult and awesome of you.

How scary for you to wake up like that. My experiences aren't the same, thought I can sympathize with the fear of loss of independence.

I'm 26 and was diagnosed with Temporal Lobe Epilepsy, and Simple Partial seizures last year, which aren't fully under control yet so I had to surrender my license to the Commonwealth of MA. This is better than being forced to surrender it by the Commonwealth, and will fare better for me when I eventually am under control and appeal to reinstate my license (hopefully within the year). I have also begun having nocturnal seizures and have been waking up with severe migraines and a bitten up tongue and cheeks, which is confusing and scary for me.

I use public transportation which can be frustrating, I have family and friends that help me get where I'm going, I have cool road bike that I got for free from craigslist and used a how-to guide on Pinterest to fix it up and make it look awesome again, all it took was some spray paint, a bell, a basket, some zip ties, and tools I had at home.
If I need groceries, I have help getting them. My husband takes my son to preschool, my mother-in-law picks him up. I take the bus to and from work every day, my bike in the summer. I bike to the park, playground, or the corner store for a treat with my son on weekends.

I use the Student Access office a lot at my college as well, which is the disability office. They are basically my liaison for all my student needs, so I don't feel like I'm whining to my professors if something in my life is going wrong. (Boo hoo Professor So-and-So my head hurts, can I have an extension?) It's more like, the Access office submits a formal disability request on the disabled student's behalf due to my special needs. Sounds like a cop-out, only it isn't. Sometimes we struggle and it's hard to admit it. Utilize your resources.

Right now things look dark, but when you reach out to your family, your doctor, your friends, and your college you'll find that they are all there to support you and help you out.

Yeah, totally sucks about driving. I really hate that I can't drive. I daydream about what kind of car I want to get when I finally can appeal and get accepted for getting my license back. (Volkswagon Jetta, Passat or a new Beetle?)

But for now you can concentrate on your health, your happiness at the moment, and the here and now.

Take care.

-Haley

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

You for sure a not alone.

Be thankful it was while you were asleep.

For sure talk to the doctor maybe changing the meds, doses etc. They did that with and finally after about 2 yrs. We got back on track but before that I could not even take a shower. and I know friends and family are f

This seems like a good support group. I just found it myself due to something that happened to me. I can relate and the others here can. Know they love you though it may scare them because its hard for some to see someone they love go thrugh this and some people if they can't fix something they don't know what to do I've learned.

Good luck. 

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

It is best to talk to your family and your doctor due to the fact that I just lost me right to drive and my wife has to take care of me, but I look at it this way, I would rather not drive than know that I hurt someone by having a spell when I was driving. Believe me it is not easy, but we all have gone through feeling like we can not do anything for our self, but we need to look that it is better to be safe than sorry

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

Interesting to find others that are on a Vimpat and Keppra combination. It seems to work well for me for SP's and C.P's but not so well with myoclonics.  Vitamin B6 really helps with the side effects of the Keppra but if you start taking it be sure to at least tell your doctor that you are.

Myoclonics are a  _itch to control I have tried  Lamictal, Depakote, Klonopin, and the worst nightmare of all Topamax eegads! I would rather have anything bad than  that evil noxious poison.

one thing I found is that any amount of caffiene will  set me off to jerking even one half a can of Dr Pepper will do it. Glad to hear that you do not use alcohol or tobacco these are especially bad things for us here.

 

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

I have been on keppra for about 10 years. I have even used the generic keppra. My neuros assistant keeps telling me name drand only. My neuro also knows I have a limited income (salary is not as high as I would like) so he also knows that I am paying half my salary for the keppra alone if I uas name rbrand name only. He has me trying the use of vimpat  hoping I can get the seizure count down which it did. We have gone up on the dosage to 300 mg a day.

It is helping reduce the seizures and by raising the dosage we are hoping to get the seizures controlled even better.

Now as for caffiene I drink about 1/2-1 pot of coffee a day and have for about 40 years. My doctors and neuro have all said that a glass of wine or a beer now and then is not bad which I know is true. I used to go out and close down bars and clubs now and then and If I drank more than 2-3 beers it did reduce the medications effects (in other words the medications protetial was reduced because of the alcohol) I generally drank Shirley Temples.Most of the people I was with never knew I wasn't drinking the same thing as they were. All it takes is knowing your limits and staying within those limits.

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

Hi, we all hate not being able to drive.  Did you know if you have a seizure while driving & kill someone you're guilty of murder?  You have a mild form of epilepsy.  Your problem might be as simple as adusting your AEDs.  How can your doctor treat your seizures if he isn't aware of them?  It might be as simple as a stronger dose, or another AED.  You're crying?  Which would you rather do:  Take some pills & not drive until you're seizure free for less than a year or spend several years in prison?

I used to lie to my neuro all the time 'cause 'I wasn't about to lose my license.'  One day while driving I had an aura with less than a second to act.  I was going to crash.  I veered off and plowed into a bush.  The only injury was to the bush.  The building next door was to a preschool.  My car was only a few yards from its driveway.  I could have murdered a child!  That scared me out of my car.  I'd never be able to live with that kind of guilt.  

I decided that day I was determined to get my license back.  The only way to do it was to work with my neurologist, so he could adjust my AEDs to stop my seizures.  Your problem could be as simple as your doctor adjusting your dose.... a mild form of epilepsy.  Be honest with yourself.  You can't get better if you don't let your doctor help you.

There are other forms of transportation than a car.  Perhaps you can commute to work.  You can always take public transportation, a cab, or if necessary, paratransit.   What about dating?  Take a cab or double date.  Epilepsy isn't the end of your life.  You're only 19.  Your life is just beginning.  Do you really believe your're NEVER going to crash if you don't take care of your brain; the most sensitive organ of your body?    

There could be an epilepsy support group in your area.  Check it out.  I'm the co-facilitator for my local epilepsy support group.