Hi there! I'm a little overwhelmed right now. Yesterday I was diagnosed with simple partial seizures after having a 24hr EEG. I'm starting trileptal and am being titrated up to a 1200mg dose. Suggestions on how best to cope with my seizures until we have them under control would be much appreciated. I will be 15 in just about a week and don't want to have to worry about seizures on my birthday. Thanks!
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Emerald,
Having epilepsy isn't the worst thing in the world. I'm sorry you were diagnosed with epilepsy. Look at it like my mother always did there are people worse off than you.
Just because you have epilepsy doesn't mean you'll have a seizure if you take your med and do what else the doctor tell you to do.
Having epilepsy isn't the worst thing in the world. I'm sorry you were diagnosed with epilepsy. Look at it like my mother always did there are people worse off than you.
Just because you have epilepsy doesn't mean you'll have a seizure if you take your med and do what else the doctor tell you to do.
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As Belinda said that if you take your meds and do what the dr says doesn't mean your seizures will stop. Getting your seizures 'under control' might mean instead of having 20 a month might mean you will have 5 a month and not as bad. This is what 'under control' is for me. Everyone is different so that doesn't mean that could be what 'under control' is for you.
It usually takes a few weeks to find out if a medicine will work for you. So don't expect to start taking it and right away there will be a change in your seizures. Sometimes a medicine will help with your seizures and sometimes they won't. So if you don't see any difference the dr may try putting you on a different medicine.
If you find out things that 'trigger' your seizures try and stay away from them as much as you can. Some of the main seizure triggers are stress (being nervous or upset), lack of sleep, caffeine and alcohol are some of the main ones.
It's nice to meet you!
It usually takes a few weeks to find out if a medicine will work for you. So don't expect to start taking it and right away there will be a change in your seizures. Sometimes a medicine will help with your seizures and sometimes they won't. So if you don't see any difference the dr may try putting you on a different medicine.
If you find out things that 'trigger' your seizures try and stay away from them as much as you can. Some of the main seizure triggers are stress (being nervous or upset), lack of sleep, caffeine and alcohol are some of the main ones.
It's nice to meet you!
lindsayschu2
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On the other hand, you could be one of the 3/4 of the people who get complete control of your epilepsy with medication. Before I had a car accident, I was 100% controlled with medication--starting with my first doses. I was controlled for many, many years and led a completely normal life in every respect, except having to take pills every day. Not everyone gets complete control, this is true, but most do--so just take everything day by day, minimize stress, and work with your doctor and follow instructions. Happy birthday!
Thanks everyone! So far the meds haven't been working and we are already on number 5. I had bad to really bad side effects to really low doses of trileptal, keppra, one I can't spell or say, clobazam, and now they are getting me off the clobazam and onto zonagram. 5 meds in 4 weeks! And two three day eegs. I'm hopeful that this med is the one, but if it's not, I guess we just keep trying things. My triggers are almost impossible to avoid because they are everyday things, but I try my best. One of them is laughter and before I was diagnosed, I was always trying not to laugh because I would have what I now know was a seizure. Now, even though I have a seizure, I let myself laugh because I always feel better emotionally afterward, even though I feel lousy physically. I'm starting to learn that my seizures aren't the end of my world. I'm scared though because my seizures seem to be progressing and I had one where I couldn't move my leg at all. That's never happened before. I've had my hands lock up, but somehow, my leg was much scarier. Any advice on how to minimize stress is very welcome since I have final exams next week! Thanks again for all the advice!
lindsayschu2
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Wow 5 meds in 4 weeks?? You must have had bad side effects! A lot of times, we are asked to ride through side effects for a while to see if they settle down and then go away in time. For me most of my side effects have gone away in time, but I have had some meds that just weren't workable due to side effects that were unacceptable, such as worsening seizures. I'm guessing you had some bad ones like that if they are skipping through meds that quickly. If the side effects weren't that bad, maybe it might be worth sticking it out with the next med to see if they calm down in time, since getting your seizures under control is important. To minimize stress, try slow, deep breathing, calming your mind and relaxing your muscles, one body part at a time. Think calming thoughts--do that a few times a day, and try to always breathe from your belly and not your chest. Rapid chest breathing is what we do under stress, and is not good for your body chemistry. I hope your next med is the one that does the trick for you!
What Lidsay is saying about breathing is very true. If you are breathing short and fast up in your chest, your body thinks we are going to need to run away from a saber toothed tiger any minute. It starts pumping out cortisol and adrenaline. Breathe slowly down lower in your belly, in through your nose and out through your mouth.
Other things that might be contributing. Are you getting enough sleep? Do you have any caffeine in your diet? Even if you don't drink coffee, there is caffeine in a lot of other things like sodas, energy drinks, headache tablets, iced tea, diet pills, etc. Read the labels. You would be best off cutting out all refined sugar and fake sweeteners as well. Also cut out anything with fake flavorings and colorings added, stuff like cheese puffs. A lot of those have MSG in them which is known to cause seizures as well as migraines.
I hope you had a happy birthday and that things are getting better for you.
Other things that might be contributing. Are you getting enough sleep? Do you have any caffeine in your diet? Even if you don't drink coffee, there is caffeine in a lot of other things like sodas, energy drinks, headache tablets, iced tea, diet pills, etc. Read the labels. You would be best off cutting out all refined sugar and fake sweeteners as well. Also cut out anything with fake flavorings and colorings added, stuff like cheese puffs. A lot of those have MSG in them which is known to cause seizures as well as migraines.
I hope you had a happy birthday and that things are getting better for you.
Thanks! I am starting the modified atkins diet, so we will see how that works. The keppra made me so lightheaded I couldn't stand at all without passing out, and it screwed my vision and hearing up. The other ones gave me more seizures and made them like 10x worse. The dr is starting me on super low doses in the future since I seem to be really sensitive to the meds. Thanks for the breathing tip! I will definitely try it.
My sleep hygiene has always been good, but fatigue is still a huge trigger for me. I get about 10 hrs a night and still have several in the morning from fatigue! Sugar was the first thing to go since it is a huge trigger for me. We made an exception for my birthday though. 
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I've gone through a good many meds and my neuro gave it a few weeks to see if the side effects (if there were any) would go away or if the med was working.
Fatigue is a huge seizure for me. If I don't get enough sleep I'm almost guaranteed to have a seizure.
Fatigue is a huge seizure for me. If I don't get enough sleep I'm almost guaranteed to have a seizure.
Awesome! You might also want to look into a low carb paleo type of diet. It's very similar to the MAD. My only beef with the Atkins Corp. is all the shakes and bars and such that they try to sell you on their diet plans. I don't think that was Dr. Atkins' intention, but corporate greed took over after he passed away. These products often have fake sweeteners (sugar alcohols) in them which, while they are low glycemic impact, they are not exactly good for you. Paleo food is just basic food but it is single ingredient, whole foods that have been messed with by humans as little as possible. Meat, veggies, eggs, fish, fruit, nuts.
So doing an Atkins plan but just cutting out the over processed foods would be great.