hey everyone

[jason92]

hi guys, my name is jason and i am 16 years old, i have had epilspsy for about 7 months. i am looking for some advice on a new medicine to take, but please bear with me on my story as it is hard to talk about

i had my first seizure september 9th 2008. i had gone to see my girlfriend at her moms work and she was going to give us a ride home. so my girlfriend and i walked to the car and waited for her mom and we were talking. about 5 minutes of waiting in the car for her mom, i got an aura and i was talking and stuttering really fast. next thing i know im making a snorning sound and all i can see is black. it took me about 20 minutes to get my speach back to normal, by then i was at the hospital. they ran a cat scam on me and they didnt find anything wrong and released me

my second one was a few days later, it was about 10 o clock on a school night and i was on the computer and i felt an aura coming so i got off the computer and ran to find someone, then tried to make it to my room but only made it to the hallway floor and had about a 2 and a half minute seizure. took probably 20 minutes to be able to talk and get the feeling in my arms back, the next morning i believe i started trileptal

my third was when i woke up in my bed and had an aura already taking place, i tried to yell but i couldnt. so i had about a 1 and a half minute seizure. took me about 15 minutes to get my speech back to normal. i believe the bext morning i started
kepra

my fourth happened when i had fallen asleep at around 10 at night, woke up, and had a seizure within 10 seconds of waking up, lasted about a minute and after i had like these chills runing though my body, but i wasnt cold or anything and i didnt know why it was happening.

so the next monrning i woke up around 8 and had another seizure right when i woke up, this one lasted about 1- 1 1/2 minutes, took me about 15 minutes to get my speech back and i had no feeling in my right arm and went to the hospital. while i was there they out me back on trileptal, also had a 24 hour eeg done but i dit have a seizure so that didnt work

my sixth one happened while i was sleeping and woke up at 2 am and had one, lasted about a minute and took about 15 minutes to get my speech back.
then went back to bed and woke up at 4 and had another one that lasted about 30 seconds.

during this time i was at school and was getting picked up at lunch almost everyday because i just couldnt stand my side effects and about the time of my 4th i dropped out of school and did home schooling because i couldnt focus ans was scared of having a seizure. after i got out of the hospital i stayed in my bed for almost a month i am currently on trileptal and i have horrible side effects with it and i want to switch but i am kind of scared to switch because i havent had a seizure with it for about 4 and a half months now and would like to keep it that way. i saw a doctor recently at ucla and had an mri done and the doctor prescriped my lamectal because it shouldnt have as many side effects as trileptal, but i havent started it. the mri came out and it showed a very very tiny piece of my brain that isnt developed i guess, im not 100% sure on it. i know medicines are different on different people but i was wondering if anyone could share there experiences with lemectal and there side effects.

it has been very hard for me to go from having a life of playing baseball for 10 years, wakeboarding, paintballing, skateboarding,swimming, and lots of other fun stuff and now i just dont even want to leave my house because i feel so crappy all the time and dont want to do anything.I would give anything just to have my normal life back :sad:

 

[skillefer]

Hi Jason! I'm not on lamictal or trileptal..but I do remember what it was like being a teen with epilepsy. Believe it or not, you can go back to doing a lot of the sports you love. But the first thing is to make sure that you are on a med that works for you. Seitching meds can be hard..but not always. This year, I just switched to dilantin. For me, it works great. I hadn't realized how tired the other med made me until i switched. Then it was like I'd managed to get all the sleep I needed and I had enough energy. For me, it was weird because Ihad been on the other med for about 30+ years. So don't just assume that a new med is going to be hard...it isn't always. And, you might find that you have fewer side effects and quit feeling so crappy. Remember, the doc is trying to find a med that will let you have a decent quality of life. It's no good to put you on a med if the med is worse then the medical condition it's treating. Just remember to be honest with your doc. Also, make sure that you're doing everything you can to minimize the amount of drugs you have to take. And yes, there are some things that you can do on your own to help the meds be more effective.

1. Get 7-9 hours of sleep each night. (no ifs, ands, or buts)

2. eat a healthy diet (quit drinking sodas and eating fast food and junk food ...a lot of them have chemicals that can make you have seizures)

3. deal with your stress in a healthy way (walk, exercise, draw, paint, write, yoga, meditiation, prayer...find a way that works for you for dealing with stress. Stress can trigger seizures.)

4. Eat about 6 times a day (your meals should fit on a dessert/salad plate, and every meal should have a protein)

5. NO MORE CAFFEINE

Here's why....lack of sleep, too much stress, too much caffeine, low blood sugar, and food sensitivities can trigger seizures. At least, those are the most common triggers. Some of us are also what is called photosensitive. That means that lights or patterns can trigger seizures for us. From your description, it doesn't sound like your photosensitive.... 6 small meals sounds like a lot of food, but it really isn't. The trick is, to make sure that you have protein every time you have a carb. A lot of people have blood sugar issues and don't even know it. Low blood sugar can trigger seizures. So make sure that your blood sugar is stable. Especially if enyone in your family has had diabetes.
4.

 

[epileric]

Also keep track of your seizures & your eating/sleeping habits as well as what you were doing about the time of the seizure. Maybe you can find out what your triggers are.

 

[jason92]

thanks everyone for the advice :clap:

 

[Crazy Monkey]

Hi Jason

Welcome to CWE

I am currently taking 450mg of Lamictal daily and have done for about 9-10 years, I do not really have any side effects, just a bit of tiredness/dizziness (but not bad). I have tried other meds where the side effects have been really bad. But not everyone reacts to meds the same way as there are people on the forum that have reacted to Lamictal. But this is definitely the best med I have been on and I hope my neuro doesn't decide to change it.

 

[jason92]

Hi Jason

Welcome to CWE

I am currently taking 450mg of Lamictal daily and have done for about 9-10 years, I do not really have any side effects, just a bit of tiredness/dizziness (but not bad). I have tried other meds where the side effects have been really bad. But not everyone reacts to meds the same way as there are people on the forum that have reacted to Lamictal. But this is definitely the best med I have been on and I hope my neuro doesn't decide to change it.

has it stopped you from having seizures?

 

[Crazy Monkey]

Ahhhh the big question.

No it hasn't stopped them, but I do not have tonic clonics my primary diagnosis is absence seizures although I have on the rare occasion had a few others mixed in the bag. (partials and tonics/drops)

With my absences, without Lamictal they are really frequent, a few hundred a day. With Lamictal they are on average 50 a day, trigger depending. I have tried several other meds, including Epilim, Keppra, Gabapentin, Ethosuximide. Lamictal has been the most effective so far, absences seem to be problematic to control. I am not a very good comparison for you. But the fact that I do not have that many of the larger type might mean that Lamictal might be doing its job more then we know.

 

[jason92]

Ahhhh the big question.

No it hasn't stopped them, but I do not have tonic clonics my primary diagnosis is absence seizures although I have on the rare occasion had a few others mixed in the bag. (partials and tonics/drops)

With my absences, without Lamictal they are really frequent, a few hundred a day. With Lamictal they are on average 50 a day, trigger depending. I have tried several other meds, including Epilim, Keppra, Gabapentin, Ethosuximide. Lamictal has been the most effective so far, absences seem to be problematic to control. I am not a very good comparison for you. But the fact that I do not have that many of the larger type might mean that Lamictal might be doing its job more then we know.

you have 100 a day?
how are you able to do anything?

 

[Crazy Monkey]

Like I said they are absences, which last anything from 2-20ish seconds, they don't bother me, they are quick blips, then back to normal. The only time they get troublesome is when I have them back to back, which normally happens at the weekends due to my meds getting out of sync, because of going out to bars and then laying in bed the following day. The only problem with absences is they seem to be difficult to get under control, none of the other meds even started to control them, so Lamictal has been the best so far.

I am able to do loads of stuff, I have a good job and do pretty much everything anyone else does, accept of the obvious restrictions such as driving.

 

[nana1]

Welcome Jason to CWE

I am on Lamictal 200mg twice a day plus keppra 1000mg 2 times a day, and zonegran100mg 3times a day. Lamictal side effect is not that bad, but i am taking 3 seizure meds so their are lots side effects for me. But i do live a normal live for me. I walk around alot, go to church, do od and end jobs ( that you can`t hurt yourself at if ya have a seizure.). I live all by myself ( not best thing to do- cause i have no idea when my seizures are coming on).But i am determined to live as much normal as life as posiiable for a person with E can.

I have had mine for over 50+ years. Just keep taking the meds your doctor tells you. Make sure you keep a diary about when these things come on, write them down in book.

 

[jason92]

wow, i hope mine doesnt last 50 years :-(

 

[RobinN]

Hi Jason,
My daughter was 14 when she had her first seizure. We tried 4 meds, tegretol, gabapentin, lamictal, and trileptal and they all had unacceptable side effects and made her seizures worse.

She is now 17 and we have found much better ways of dealing with her seizures. They include, making nutritional changes, vitamins and minerals for brain and body support, and neurofeedback. It has been remarkable, and yet it doesn't happen overnight. I see from my journaling that over the past year her seizures have reduced from 6 a month to one every two months.

I am working with research that I have found that hypoglycemia can cause seizures as well. This seems to fit my daughters situation, so I am making additional changes to help her body heal from the inside out.

 

[Meetz1064]

Hey there

Jason, and welcome to CWE!!

Obviously you have found one of the greatest places to be!

I'm like you, I have the bloomin' T/C's too. It's been quite a while since I've had one, bless the doctor (I could quite literally kiss the guy) before that......they didn't happen all the time, but far too often for my taste.

I've now been diagnosed with a fourth kind of epilepsy, and by looking at me, no one has a clue........unless I tell them. Mine are all nocturnal.......it turns out, as I recently discovered, they weren't always that way. My memory has been impaired by some of the seizures over the years, so I didn't remember that part.

I DO recall a time where I was having the blasted things on a weekly basis. And my husband was doing nothing about it. (My T/C's are so bad that I become 2 years old again, it takes close to a week for me to think properly---let's not mention the broken bones.) My best friend stepped in, and found the doctor that I now have, and things are sooooooo much better.

As a child, my mother, bless her (and we disagree on a lot of things right now), made sure I did every other thing that any other child did. Right down to climbing on jungle gyms and breaking my arm on one cuz I tried to do a cartwheel on top of it (I'm still a tomboy.....what can I say? )

I do a great number of things, but in particular I work with kids almost every day. And, I have a BLAST doing so. I really do. If I didn't feel I was safe to do so, I wouldn't. I still go horseback riding on occasion, drive, lots of things.

DO NOT LET EPILEPSY STAND IN YOUR WAY. IF YOU DO, IT WINS. When it comes to E, KNOWLEDGE IS POWER.

If you saw the recent cover of Newsweek, you'd have seen that there were some really good articles in there.......and tons information about people who matter. Orrin Devinsky an epileptoligist, Susan Axelrod, who founded the CURE Project, and whose husband is one of President Obama's senior advisors. Even the editor of Newsweek, which is why the whole issue came into being, has had a personal experience with it because of his friend's child.

So like I said, don't let it stand in your way. Keep track of everything, like the others suggested, get plenty of sleep. Learn what your triggers are, and avoid them.

Take care,

Meetz

 

[jason92]

thanks everyone
ive noticed that when i wake up in the mornings now i seem to wake up sometimes with an aura already occuring but it doesnt turn into a seizure, could it be from not enough sleep?

 

[Crystal11]

Hello Jason,
I have complex partial seizures and sometimes will wake up with just a aura/warning and then sometimes it goes into a regular CP. I just rest there not realizing a seizure is happening until its over. My friend Rachel is able to tell by the way I look, or the way my eyes look. I look distant or confused and sometimes will do things without realizing it. I try to hide it after I'm more aware but my twin sis and friend can always tell. Yes I think it has a lot to do with lack of sleep. you might keep track of your bedtimes and when you wake up and see if there is a connection for you. I try to keep my sleeping schedule pretty normal but I only get to stage two of sleep rather than stage 1-5 and back and forth all night. I usually have to take medication to sleep but not currently which is making it hard to keep everything controlled. Sometimes I sleep 12 hours straight... so right now working on getting sleep back to normal without forcing myself to stay awake 24hours then go to sleep.
If I go to bed and only sleep 5 hours then I normally wake up to a seizure or aura or both. Not a fun way to wake up- it almost makes me stressed out about waking up.. I take the majority of my meds before I go to bed- or at least the higher doses of everything. (Keppra 3000mg and Tegretol XR 600 a day).
Keep a seizure journal or diary/log- it might tell you more than you already know or knew.
Take care,
Crystal

 

[RobinN]

thanks everyone
ive noticed that when i wake up in the mornings now i seem to wake up sometimes with an aura already occuring but it doesnt turn into a seizure, could it be from not enough sleep?

http://www.coping-with-epilepsy.com...ck-rebeccas-story-2733/index10.html#post57585
Dr Blaylock:

Since seizures often occur during sleep, they are frequently not diagnosed. There are many newer observations concerning seizures that can offer new ways to control them. One of the links most often overlooked by physicians and even neurologists is hypoglycemia. We know that, in healthy people, dropping the blood sugar rapidly can precipitate a seizure, and those prone to seizures are much more sensitive to hypoglycemia.

 

[alivenwell]

Hi Jason! I'm on Lamictal and have excellent seizure control for YEARS now. That was unheard of when I was 16 years old. It could be you're growing and you need a slow releasing drug that lasts longer in your system.

Your description of seizures sounds exactly like mine were in the past. Technically, the aura is a seizure.

Also, it might be a good idea to get sports drinks (without caffeine, no ginseng, no ginko biloba) that have electrolytes in them, especially during warmer weather. Carefully read those food/drink labels.

It may take a while for the Lamictal to start working. If you get a skin rash after starting Lamictal, then notify your doctor asap.

 

[skillefer]

not enough sleep would be my best best.