New - Anybody know about zonegran?
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UPDATED: Tue, 07/01/2008 - 5:24pm
pRushb...
Looking for some info on your experiences, for comparison..
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I'm 28..male. I started having petit-mal seizures (I see there's new terminology out there now) when I was 7, but wasn't diagnosed until I was 13 and had a grand-mal while sick with the flu(4 spinal taps and many scans later). I was put on Tegretol, then Depakote was added. I turned into a big, fat, sleepy kid who couldn't concentrate and barely got through high school and college. But, I managed to stay free of all seizures. Around 23, I started having some trouble and, after having 2 petit-mals, was switched to Carbatrol. After about a month, I switched to Zonegran since it had a weight-loss side effect and I had reached 265lbs.
I've been on 200mg/day of Zonegran for about 5 years. I do my best to stay physically fit, for the most part, and eat healthy enough to make most people miserable. I don't drink, have never even BEEN drunk, don't smoke or do drugs...Really, for 15 years since that grand-mal, I've only had 2 petit-mals...everything has been peachy Until today..
For the last week or so, I've been getting little fleeting memories of deja-vu. I've been feeling just a hint of that old friend from my pre-pubescent years, but by the time my mind searches through the pathways to get to to my triggering memory (it's always a memory I've had or used before during a petit-mal), it disppears as fast as it came and doesn't lock-in for the seizure. The whole process takes 2-3 seconds.
This actually happened a couple times about a month ago, but it went away. But, after it happened a couple days in a row (and with a 12 day out-of-town vacation coming up), I called my neurologist's office. They told me to add 25mg of Zonegran to my nightly dose. So, here I am today after 4 of the increased doses, and today while on the phone at work, I had a petit-mal. It lasted about 15 seconds.
The new terminology for seizures is a bit sketchy for me, but I've always been able to walk and talk through a petit-mal. Granted, the less I focus on the deja-vu, the longer it takes to complete the experience, so I try to let it go. Today's seizure was EXTREMELY mild. I've had much worse, and this one wasn't followed by an excruciating headache like my old ones were. I called the neuro again, and they upped my dose another 25mg. I know 200 and even 250mg a day is a tiny dose. I used to take over 5000mg/day between the Tegretol and Depakote, but every picture taken of me in high school is also horizontal and unconscious..LOL
However, I'm really worried about having another grand-mal. I'm going out-of-town for what is supposed to be a fun vacation, and my girlfriend is now scared to death (she's never experienced me having problems) Not to mention that not driving for a year just can't happen.
Now that you understand my history a bit, I guess what I'm wondering is...
Has anyone bein in similar shoes to mine? Should I expect a grand-mal? Should I not, since I've only had the one, ever, and it was while I was caught in the throes of puberty? If a 12% increase in my dose didn't help, why should a 25% increase? I feel like I'm still far below that magic blood level I need to be at (and apparently they can't test for with Zonegran), and these increments, although sensible, are being added so slowly that I might have real problems before they get me leveled out.
Thanks
Patrick
By pRushb... at Tue, 07/01/2008 - 5:24pm | 77 views | 5 comments
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Recent Comments on this Discussion
Hi Patrick,
I can relate to how you feel. My family thinks I am crazy. I tend to make really flippant comments about possible epilepsy situations that I might suddenly be in.
I am 42 years old and had a single gran mal seizure about three months ago. Since then, I have been diagnosed with epilepsy that seems to have started about 18 years ago with either simple or comlex partial seizures in the temporal lobe. They start with the deja vu feeling, and I have been dealing with it for all this time without knowing what it was or why it was happening, and of course afraid to tell anyone, because I just thought I was crazy. I don't know what the seizures were really like, what I did, or how long they lasted because I was the only one there.
Anyway, now that I have had the big seizure event, everybody in my family knows about it. And they watch me and wonder, "Is she okay? Is she having a siezure? Will she have another one, right now? What will we do?" I haven't had anymore seizures since I started the medication, not even the partials that I used to have all the time. I am happy about that, but I still don't know and nobody does know if I will have another seizure, and if it will be big or small. I have spent a lot of time just wondering and worrying about whether or not it will happen again. Nobody knows.
I read an entry on this site about a guy who was in this thirties, I think, and he had had four siezures. One at 12, one at 16, one at 26 and a recent one. Each time he had just suddenly found himself in an ambulence during his otherwise normal daily life.
I feel like a bomb that could go off at anytime. And the days come and go and nothing happens. I just try to live my life as normally as possible and not think about it too much. But every so often I find myself in a precarious situation and I think, "Oh my God, what if it happens now?" I can get really morbid sometimes. Then I'll say something out loud and people, people who know, will just look at me and be so worried.
Then I just feel stupid like I should keep this to myself and not worry everyone, especially since nothing will probably happen.
What I really wanted to say is that I have heard that seizures can change as you get older, and what happened in the past may never happen again. Nobody knows what will happen in the future. You can't really plan, but you can do what you are supposed to do and try to be prepared, just in case. And then go out and live.
HI PATRICK,
JUST BECAUSE YOUR ABSCENCE (PETITE MALS) SEIZURES HAVE COME BACK, THAT DOESNT MEAN YOU ARE GOING TO START HAVING TONIC CLONIC (GRANDE MALS). DONT YOU JUST LOVE THE NEW NAMES? PERSONALY I DONT KNOW WHY THEY CHANGED THEM. BUT SERIOUSLY, YOU ONLY HAD 1 AND YOU WERE ILL, SO I THINK YOUR ODDS ARE PRETTY GOOD NOT TO HAVE ONE, OF COURSE NO ONE IS PROMISED NOT TO HAVE ONE, EVEN THOSE WHO HAVE NEVER HAD A SIEZURE IN THEIR LIFE.
I AM A BIT OLDER THAN YOU HA HA!!! I JUST TURNED 50, BUT I HAD PETITE MALS AS A CHILD, THE DOCTORS TOOK ME OFF OF MY ZARONTIN AT 12 SINCE THEY FIGURED EVERYONE OUTGREW IT AT PUBERTY BACK THEN AND I HAD A CLEAR EEG WHEN I WENT IN. ALL THROUGH JR HIGH AND HIGH SCHOOL I HAD PETITE MAL, AND THEN STARTED DEVELOPING SIMPLE AND COMPLEX THOUGH THEY WERENT DIAGNOSED TILL I WAS OLDER. I LOOK BACK AND IT EXPLAINS A LOT THOUGH. IN MY MID 20S MY SIEZURES DID CHANGE AND I STARTED HAVING GRANDE MALS AND STARTED TAKING TEGRETOL AND ZARONTIN. THE NEURO TOLD ME IT IS NORMAL FOR SIEZURES TO CHANGE IN YOUR MID 20S AND AGAIN AROUND YOUR MID 40S. SO YOUR PETITE MALS MIGHT JUST BE WORSE CUZ OF THAT.
I GET BAD MIGRAINE HEADACHES WITH SIEZURE ACTIVITY AS WELL. YOU CAN GET THE HEADACHES WITHOUT ACTUALY HAVING A PETITE MAL, JUST HAVING LOTS OF TINY SPIKES IN YOUR BRAIN. ZONEGRAN IS A GOOD ALL PURPOSE DRUG BUT THEY DO INCREASE IT IN SMALL AMOUNTS OTHER WISE IT KNOCKS YOU OUT. I WOULD TALK TO YOUR NEURO ABOUT AN INCREASE PLAN TO TAKE WITH YOU ON VACATION IF HE PLANS TO KEEP BRINGING IT UP. I WOULD ASK HIM WHAT HIS GAME PLAN IS.
DONT GET STRESSED OUT ABOUT HAVING SEIZURES THOUGH. STRESS BRINGS ON SEIZURES. YOU NEED TO GO AND HAVE A GREAT TIME ON YOUR VACATION. STAY CALM COOL AND COLLECTED. DONT EVEN THINK ABOUT YOUR EPILEPSY WHY YOUR GONE. HAVE A WONDERFUL TIME AND TAKE LOTS OF PICTURES.
I USE CAPS FOR THE VISUALY IMPAIRED
GOD BLESS, BANFFGIRL LIFE IS FRAGILE, HANDLE WITH CARE.
Thanks for the repies, both of you!
I went, and my girl and I had a great time. We watched her best friend get married on the beach, we stayed up really late some nights and I watched her get drunk several times (LOL), then we moved on to the beach house for a week by ourselves. I was in a nice, deep state of relaxation and feeling great. I even avoided getting too much of a burn!
I made it a whole week on my second dosage increase, and thought I had everything leveled out. Then, we're all sitting there on the deck (her friend and the new husband stopped in for a night on their way home) last Wednesday night and I went right into a petit-mal, mid-conversation. No one even noticed it, since I can converse freely (although it's a struggle) while it's happening. But, I suddenly got really sleepy and went to find he couch for about an hour. After that I was ok. The next morning I had 2 more in the span of an hour before I ever got out of bed, called the neuro's office and was told he was on vacation as well and I should take another 25mg every morning and call them Monday, then had one more a couple hours later (Thursday morning) and have been fine ever since.
I'm frustrated, but I didn't let it ruin the rest of my trip. I spent a few hours moping and worrying, but I got my game face on, did my daily stretches (great relaxation technique as well) for about 45min, and even a bit of meditation at the same time. My girlfriend has never had to deal with this, so she worried for a bit. But, even she got her mind right and pretended like nothing was going on. She's a good one.
I think They're going to go ahead and schedule and EEG when I call tomorrow, which is good. I still don't feel like I'm quite where I need to be. I feel like I'm just managing to keep the seizures at bay. I'm not sure if that week I was clear was pure luck, or just the complete absence of stress at that time. You guys (gals) are right, though. You can't let it consume you. You can't think about it. You just have to be open about it when the time is right, and the rest of the time go on like you don't have anything at all. It's like I was telling her the other day...This is just a tiny problem, in the grand scheme of things. I'd much rather have Epilepsy than something like Diabetes, or a whole host of other common, "manageable" diseases or conditions.
Mine is just a bit more theatrical, at times..
Hello Patrick, my name is Danielle im 23, I have a twin brother that has epilipsy. I haven't experienced one, but i've experienced watching and learning from him. I;ll Tell U his story.
When he was 9 he started with the petitt-mals. The Teacher kept hitting him in the head with ink pens and her finger. Also just pushing him into the corner, pretty much just mitreating and hitting him. my mom found out and told the school board, they didn't do anything about it. So my brother started taking some medication "he said" tased like chocolate. Then as he got a lil older, he started getting more petitt mals. We was on 11th grade when he caught his first Grand-mal. i was watching him and his friend play a game (had flashes of light) and we seen his person go into the corner of the room just walking into the wall. we was wondering what was going on when we looked at him there he was all streched out on the sofa about to fall off. his friend went help him off on to floor and i went wake my parents up to let them know. we brought him to the hospital and they diagnosed him to Grand-mals. That year he caught about 8 of them grand mals and a lot of petitt mals. He was struggling thru school because of epilepsy.
When School was over i graduated and he didn't. He tried his best to understand the tests but he couldn't the grand-mals took a toll on his braine. Well He started going through stress b/c he couldn't get a girlfriend or even keep on because the grand-mals and him act like a 9 year old, go figure the day he started getting them huh. Since i moved out he had a few and my older brother used to get them also, but grew out of it. He seen one of the grand-mals he had and understood what others around him felt when something like that happens.
When he was 22 i think he started dating this girl named Brandi. They got married This year in january, i ws so proud of him to actually find the one for him. He was seizure free for 2-3 years, until he moved out of my mom and dads house to moved with her mom and dad. He was going thru so much stress and had quite a few grand-mals Back 2 Back, like maybe 15 minutes apart. So my mom took them back into the house to help him more on taking his medicine. He still has a bad habit of not wanting or "forgets" to take his medicine.
When he was 21 or 22 the doctor gave him permission to get a license since he was seizure free for 2-3 years. Recently he started working for walmart and luckly his wife works the same time. Just Last night i had a phone call from my mom asking me if i was sleeping, i was usually sleeping around that time she called, for some reason i stayed up a tad bit longer. She told me that him and his wife got into a wreck, right when he got to the stop sign to take a right, then a left turn to get out of parking lot. Well she noticed that he just kept going and passed the stop sign, she looked at him and he was having a seizure. His foot was on the gas and they was hall'n tale, they went over a 4 inch lip into the grass and was going into onging traffic. She had turned the wheel and hit a post, we rushed there to see if he and her was ok. When they drove his truck from off of the grass and over the lip, his grill and lights was looking at the ground instead of looking forward. They was rushed to the ER, they made it out fine.
After staying there for 4 hours we got to leave everything was ok. It wasn't Even 5 minutes with us leaving the hospital he had another one. That was the worst i seen, his arms and legs went straight, eyes rolling in the back of his head, spit with blood comming out of his mouth because he bit his tongue and his lips was blue. It Scared me a lot, my mom pulled over and got out to go hold his head up so he won't choke or drown on his spit. when we seen that he was starting to respond she got in car and we left. She deopped me off at home and i gave him a hug and asked if he was alright. He was slurringand saying he was alright, i knew he wasn't though i felt it. so i had him put his top half outside the car as i held him up and he started throwing up.
He told me that all day he was feeling like he needed to do that, and then he caught one right after work. He said it again in the hospital, 5 minutes after he had another one. So when i woke up the next morning i called to see if he was ok. My mom told me that he caught another at 7:30am then another at 9:10am. His seizures lasted for like 25 minutes, that is when he first started with it until he started being responsive.
Whats messed up he been put the application for social security and they didn't do anything the first or second time. so now he was diagnosed with bi-polar, he put another application and they still didn't give him an answer. they kept saying that he was able to get a job to pay for dr bills and medication. He didn't work as a cop, but they thaught he was sleeping so they fired him. Thats why he went to walmart and work with his wife.
He is fine now but i also worry for him because it works on the heart when that happens, he can go into cardiac arrest because of it. i bet socail security will do something now huh...lol i really don't want you to worry but this is just a heads up for furture. Might happen, but might not.
Nice typing to ya patrick, just please watch out and look out for signs. Don't be afriad to tell people that would be best to do so they'll know.
Danielle..I don't know if you're still around. Thanks for the reply and story. You posted it on my birthday!
To be fair..your brother would probably have less problems if he'd stick to taking his medicine and NEVER miss a dose. I very rarely miss a dose, and I NEVER choose not to take it. Ever. You're asking for trouble if you do that.
Best of luck to him, though.
I'm still having the petit-mals. I was moved up to 400mg/day of Zonegran and actually made it three whole weeks without a seizure, but eventually had one. The doctor said 500mg is about as high as you can get away with on Zonegran without becoming a zombie, so he's started me on the Lamictal intro pack. I've been on it for 3 days. I'm only taking 25mg/day along with my 400 of Zonegran. No side effects. I don't plan on having any, either. It's a low dose for now, though. But, I truly believe in the power of the mind, and I truly believe that people (myself included) can and do "create" side effects by expecting them to happen.
So, I'm not expecting any. I'm only expecting the medicine to work.
:)