Hi

[Mack]

I am 19 and was diagnosed with epilepsy on March 8, 2006 could've been 2005 not really sure. Since then I have been and off medications and have been to two different Neurologists. The first doctor was constantly changing my meds b/c he was worried about weight loss/gain, depression or anxiety. The second doctor (who i am currently with) then prescribed me with 100mg of Lamictal and 100mg of Clonazipan in the morning and afternoon.

I then had my second seizure this year in May which was a shocker. I hadn't twitched in over a year, took my medications on a regular basis got 7-8 hours of sleep as recommended by the doctor and was told I was stable.

It made me so mad because I did everything I was supposed to do and it all seemed that everything that I had just went through (CAT scans, brain wave monitoring, medication changing etc.) had washed down the drain and was useless. Now I am up to 200mg of Lamictal and 100mg of Clonozipan in the morning and 250mg of Lamictal and 150mg of Clonazipan in the afternoon.

[Bernard]

Hi Mack, welcome to the forum.

I can understand your frustration. Perhaps there are some variables in your seizure threshold equation that you haven't discovered (or accounted for).

Make yourself at home here.

[skillefer]

Hi Mack! Welcome to CWE. We're a friendly bunch, so feel free to ask questions. As for your frustration....I truly understand. I went 9 years with no seizures and then wham, started having them again....As Bernard suggested, there may be other things that triggered your seizure. For example, my most memorable one was triggered by low blood sugar. Also, just because a doctor gives you a prescription at one level doesn't mean that you're going to stay at that med level. Your therapeutic range might be much higher, and for many of the different meds, you have to build up slowly. Also, when was the seizure? Do they happen at a particular time of day? Had you been drinking? Did you have an energy drink or lots of coffee earlier in the day? All of those things can act as triggers. To help your doc, you might want to start keeping a journal. Keep track of what you eat and drink, how much, how much sleep, any stress you're under, and changes in routine....and if you have a seizure. Then, you can go back and see if a pattern develops....if there's anything that seems to "trigger" the seizure. Hope this helps. And welcome!

[Mack]

My neurologist told me that stress and lack of sleep were the only two things that were noticeable by the brain wave feedback. She said there is a slight chance that lights (flashing/strobe) could be a trigger so every year on the 4th of July and New Years day I wear dark sun glasses when watching fireworks.

She told me that as far as the stress goes to try and find something that helps me relax and for me that's playing on my computer. I love to play strategy games and love solving problems. I'm not sure if this puts stress on my brain or not but it hasn't been a problem...... yet.

I've been trying to get a steady amount of sleep going (usually 7-8 hours a night) and start/end near the same times. People have told me that a huge stress reliever is taking a nap during the day but if I took a nap during the day I'm afraid that I wouldn't be able to sleep at night which would cause lack of sleep and throw off my "schedule".

[RobinN]

Hi Mack.. I know the feeling. However, I get frustrated just from one month to the next.
For me it is keeping a teen on the nutritional plan that helpful with seizure control. Have you tried changing the foods that you eat?
Doctors don't suggest this.

[Mack]

My first seizure occurred around 1-2pm and my most recent one occurred around 6:00am w/o any warning signs such as twitching. Luckily for me I was sitting on the couch this time not walking with a bowl of cereal over a tile floor and then slamming my head into the counter then the floor (as I was told).

I don't drink alcohol, I don't drink coffee and I rarely drink energy drinks and when I do it's usually before I play flag football on Sundays which is around 10am. I don't think I've had enough seizures for there to be an actual pattern but thanks for the advice

My blood pressure, sugar levels, and everything were normal my most recent seizure. My neurologist is still confused (as I am) about why I had my last seizure. It scares me not knowing what other things it could be when all my levels are fine whenever I have a seizure and especially my latest one because EVERYTHING was normal. It seems like everything I read about symptoms/triggers don't apply to me because I'm right on the border between an Adult and a Teen. Maybe there is something that I'm missing or maybe there's something that hasn't been discovered yet. From what I was told by doctor and what I've read, most epileptics are over the age of 21 and under the age of 16 so maybe studies haven't been conducted on the "middle" epileptics.

[Mack]

I have changed what I eat and try not eat as much sugar as I have in the past. The most sugary (if that's a word) thing I have is soda and that's maybe a 12 pack of Coke or Mountain Dew in one month. I don't eat as much fast food as I used to and I try to eat 4-5 meats and 1-2 fish (preferably Orange Roughy) during the week. My dad does all the cooking so it depends on what he makes that night but I try to give some input in on what would be good.

[skillefer]

*chuckle* Ok......sorry just laughing about the "middle" epileptics. Actually, there's lots of different triggers. I don't listen to fast violin music because it once triggered a seizure. I don't go to clubs because many of them have strobe lights, and that is one of my triggers. For others here, they are triggered by smells. So there's plenty of different kinds of triggers. Even fluctuations in hormone levels can act as a trigger.... Hopefully, you won't have enough seizures for you to actually notice a pattern....but, in case you do have more, just remember to keep track of stuff. It'll give you and your doc more info. And info never hurt.

[Meetz1064]

I had to laugh at the middle epileptics thing, too. THANKS. I needed that today. *SIGH*

Oh, by the way, welcome to CWE. This is a really cool place to be. Wait til you discover all the nooks and crannies that Mr B (Bernard) has put in this house...this AWESOME home he's built for us. Buckeye should be around soon with the coffee......

Talking about food, and soda pop.....just out of curiosity, how much aspartame/sweetnlow type stuff do you use? MSG? Those, too, are triggers, believe it or not. And, YES, believe it or NOT, so are HORMONES. And you, my dear, are right in that hormone-laden age......SORRY. NORMALLY, it's the females whose hormones cause the problems. HOWEVER, sometimes guys have that problem, too. Not usually, but it does happen.

Oh, and don't feel bad, or too frustrated because everything's turning out normal. I've had E for going on 43 years now, and I just now am having activity show up on my EEGs in the last 3 years. Yet, I had PHYSICAL proof when I had a seizure, as well as witnesses to them. Nothing had EVER shown up on ANY EEG I'd ever had done before IN MY LIFE....so I do feel your frustration there.

But do start keeping a journal, like Skillefer said...OK, so it's a PAIN IN THE ARSE. Eventually though, SOMETHING'S going to show up. Who knows what it is, but something. And it will help your doctor immensely, I promise. It doesn't have to be anything fancy like a leather-bound thing. Even if it's just like a 3-ring binder with notebook paper in it....that will work, too. Once you get into the habit of it.....and writing EVERYTHING......meds & doses/times, food eaten/amounts/when; computer/TV/videogame time; sleep & when/how much...I think you get it.

Again, before I forget.....WELCOME TO CWE! This is a REALLY COOL PLACE.

Meetz

[brain]

Mack!

Nice to meet you and welcome to the CWE!
And as for fast foods, nice seeing that you're
not having frequent "Big Mac Attacks" (sorry
I couldn't resist!) ....



But sorry to hear about life with "E", it's a
strange ride! I've had them all in my life and
as with everyone else, we all wish it would be
10,444 feet under the ground and STAYED
there permanently!

As implied.... there are "triggers" that can
cause / trip "E" - for example, being exhausted,
excitement, stressed, food triggers, inherited,
genetic, result of childhood sickness/disease(s),
unknown reasons, and so much more.

And as also posted it's a major P.I.T.A.!!!

While women get these "horror"mones more than
men do - but men get them too! It's absolutely
insanity at times where one has to be 100% sane
to have "E"! (So we must be in our right minds?
Huh?)

Why do I say that? Well, consider this fact: After
all, we have to endure through all these hellish
nightmares - and "normal" people don't! And if
"normal" people had to go through what we did,
they'd chickened out!

[Mack]

Ya my doctor talked to me about hormones so i'm aware of that I rarely use Sweet n Low and that's if I get iced-t at a restraunt. Other than that I don't use fake sugars and I try to stay away from the sugars.......it's hard. MSG not to sure what it is exactly but I know it knocks my dad out when he smells from Panda Express but I don't eat Panda a lot but my dad usually cooks mandarin chicken (which i assume has MSG) about 1-2 times a week.

Thanks for the tips and I will start to log stuff. Some of the things you guys listed are triggers I never even would've guessed of! Almost sounds like allergies or something.

[haird18]

Glad you joined I hate it when you have just keep dealing with these seizures all the time. But here you will find many people who understand everthing you are dealing with and welcome to the forum
David

[Meetz1064]

it is amazing isn't it? The number of things that can set us off? Just so you know, MSG stands for Mono sodium glutamate.......so if you look at a label of some of the foods that you eat, you can see what it is in. And the "higher" it is in the list, the greater the concentration.........

[Belinda5000]

HI Mack,
welcome to the group.I take my meds religiously and still seize.
I've never been controlled for more 8 months back in 90-91.
Anything can send me into a seizure and my triggers are weird and they've just started back in the last year.

I hope you have better luck than me after trying 19 meds my seizures still come and the surgery didn't stop them.

watch for what might trigger your seizures it can be anything now that can help if you know.

Belinda

[skillefer]

True, MSG is Mono Sodium Glutamate. Also, try to decrease the number of foods you eat with "artificial flavoring".....those chemicals that are used to flavor the prepackaged foods can cause seizures in people who are sensitive to them. Now, if your dad is cooking the mandarin chicken from scratch, you should have no problems.

[RobinN]

You may not think it is a lot...but this is what LEAPED off the page when I read it.

12 pack of soda
sweet and low
Energy drinks
Processed foods

MSG: (check labels) I take this list to the grocery store
http://www.msgmyth.com/
http://www.msgmyth.com/
http://www.westonaprice.org/msg/index.html

Allergies to Gluten, Casein, Corn, Soy, eggs....
deficiency in magnesium, B vitamins, Omega 3s
All can be seizure producing.
...even being constipated (thought I would throw that in)

[GraceyFace]

hey mack,

my name is grace and im also new to the forum, just quikly read through most of ur posts and i can understand your frustration with not understanding the cause. i can definitly relate, im 20 now but i had my first seizure at 14. ive had countless amounts of seizures, in often uncomfortable, embarrassing or dangerous places.like my mums had to carry me out of the shower, ive had a seizure while my parents were driving, we almost crashed cos i was in the passenger seat.so the frustration thing i get, what ive come down to with my seizures is that it is either physical or mental strain, so if im stressed in anyway im at risk of fitting. seizures often happen for many diff reasons, diet, lifestyle, stress etc its just about finding out what it is for you. hope that helped in some sort of way