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Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
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epileric
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Hey Midge
& Welcome. There's a lot of info here as well as some very supportive people. I had epilepsy for 48 years before I found anyone who could be supportive & understand where I was coming from (at least re. seizures)
Are you on any medication or using any other type of treatment to help control the seizures?
Do you know what kind of seizures you have?
Have you figured out if you have any triggers that provoke seizures? Something that does help is keeping a log of when you have seizures, sleep, eat, your digestive schedule, even how you were feeling before during & after the seizure. You might see a pattern that helps you deal with them.
Meanwhile if you have any questions please feel free to ask.
& Welcome. There's a lot of info here as well as some very supportive people. I had epilepsy for 48 years before I found anyone who could be supportive & understand where I was coming from (at least re. seizures)
Are you on any medication or using any other type of treatment to help control the seizures?
Do you know what kind of seizures you have?
Have you figured out if you have any triggers that provoke seizures? Something that does help is keeping a log of when you have seizures, sleep, eat, your digestive schedule, even how you were feeling before during & after the seizure. You might see a pattern that helps you deal with them.
Meanwhile if you have any questions please feel free to ask.
midge18
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heya epileric, Yeah the doc says I've got a combination of complex partials and tonic clonics, and he put me on Lamictal for it.
I never even thought of looking at eating times or anything, I always thought that stress and sleep were the two factors so I watch my sleeping patterns and try not to get really stressed over stupid things (which should be done anyway!). Does when you and what you eat affect you that much?
I never even thought of looking at eating times or anything, I always thought that stress and sleep were the two factors so I watch my sleeping patterns and try not to get really stressed over stupid things (which should be done anyway!). Does when you and what you eat affect you that much?
epileric
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everyone reacts differently
Stress & sleep do effect seizures but I've found that if I have my first meal of the day too late it's likely to provoke a seizure. Also if I don't have enough protein then I'd better not have sweet desserts. I've also found that holding my um... bowels/bladder can provoke a seizure. That's all me though, everyone is different so you're going to have to find out what effects you. That's the fun part.
There are diets that are high in fat & protein but low in carbs. Zoe's way more informed on the diet aspect of things though. http://www.coping-with-epilepsy.com/forums/f39/
Something else to look into is the alternative treatments that can help. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments. There is a "History Book" in the library where people keep track of what alternative treatment they used & what results they got.
Stress & sleep do effect seizures but I've found that if I have my first meal of the day too late it's likely to provoke a seizure. Also if I don't have enough protein then I'd better not have sweet desserts. I've also found that holding my um... bowels/bladder can provoke a seizure. That's all me though, everyone is different so you're going to have to find out what effects you. That's the fun part.
There are diets that are high in fat & protein but low in carbs. Zoe's way more informed on the diet aspect of things though. http://www.coping-with-epilepsy.com/forums/f39/
Something else to look into is the alternative treatments that can help. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments. There is a "History Book" in the library where people keep track of what alternative treatment they used & what results they got.
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skillefer
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*chuckle* Hi Midge! Welcom to CWE. 
Here's the advice I usually give...keep a journal. In it, keep track of the following things:
1. Food and drink (what, when, and how much)
-food sensitivities as well as blood sugar issues like hypoglycemia can trigger seizures. So can MSG.
2. Sleep (how much uniterrupted sleep each night)
3. Stress ( Any new stress like illnesses or other types of stress, and how you deal with them.)
4. Caffeine ( What you intake, how much, and when..)
5. your cycle (if you're a woman...yes hormone fluctuations can trigger seizures)
6. Odd feelings (migraines, odd feelings/smells/tastes/sounds/sights...when these happen and how long they last..)
7. Seizures (when, where, how long they last, and what you were doing prior...)
The reason for the journal is to try to weed out what is triggering your seizures. Some people can figure it out and avoid the triggers..others can't ...but it will definitely help your doc when you give him a copy. Here's why the journal is so detailed. Sleep and stress are not the only seizures. If you have a family member that had diabetes, you need to make sure that you keep an eye on your blood sugar. Here's what I usually tell people:
1. Make sure that you eat 6 small meals a day. By small, I mean that it should fit on a dessert plate. Also, make sure that it's healthy. In other words, for every carb, you should have a protein. This slows down the carb changing to sugar in your blood and helps to keep your blood sugar levels even. low blood sugar can trigger seizures.
2. Make sure that you get 7 hours of uninterrupted sleep each night. Hard to do...but much better then having a seizure.
3. Find healthy ways to deal with stress. (Art, writing, exercise, yoga, meditation, prayer, etc...they all help.)
4. If your seizures are triggered by flashing/flickering lights (computer games, flickering lights in stores, strobe lights) or patterns (repeating patterns like checkerboards for example) , or if those things make you feel queasy or sick, you might be photosensitive and you might want to get blue polarized lenses. I don't mean the lenses with a blue tinting applied to them...I mean the ones made of actual blue glass. Many have found that these lenses can cut their number of seizures by 50% or more..
5. Keeping track of your cycle, if you're a woman, should help you figure out if you are catamenial. If so, the hormone fluctuations can trigger your seizures and you might want to consider getting a hormone cream to help even out the hormones.
6. cut out all caffiene (this includes tea, sodas, coffee, energy drinks, and for some people chocolate.)
7. Do NOT use any OTC meds (antihistamines can trigger seizures...and other OTC's can interact with our meds.)
8. If you are taking meds, check with the pharmacist or your doc to find if there are any foods or meds you should avoid. some meds are not absorbed well if a person eats grapefruit or drinks grapefruit juice. Also, birth control might not be as effective if you are on AED's.
9. You might want to cut way back on any alcohol or illegal drug use. Some people find that alcohol or pot actually increase their seizures.
Here's the advice I usually give...keep a journal. In it, keep track of the following things:1. Food and drink (what, when, and how much)
-food sensitivities as well as blood sugar issues like hypoglycemia can trigger seizures. So can MSG.
2. Sleep (how much uniterrupted sleep each night)
3. Stress ( Any new stress like illnesses or other types of stress, and how you deal with them.)
4. Caffeine ( What you intake, how much, and when..)
5. your cycle (if you're a woman...yes hormone fluctuations can trigger seizures)
6. Odd feelings (migraines, odd feelings/smells/tastes/sounds/sights...when these happen and how long they last..)
7. Seizures (when, where, how long they last, and what you were doing prior...)
The reason for the journal is to try to weed out what is triggering your seizures. Some people can figure it out and avoid the triggers..others can't ...but it will definitely help your doc when you give him a copy. Here's why the journal is so detailed. Sleep and stress are not the only seizures. If you have a family member that had diabetes, you need to make sure that you keep an eye on your blood sugar. Here's what I usually tell people:
1. Make sure that you eat 6 small meals a day. By small, I mean that it should fit on a dessert plate. Also, make sure that it's healthy. In other words, for every carb, you should have a protein. This slows down the carb changing to sugar in your blood and helps to keep your blood sugar levels even. low blood sugar can trigger seizures.
2. Make sure that you get 7 hours of uninterrupted sleep each night. Hard to do...but much better then having a seizure.
3. Find healthy ways to deal with stress. (Art, writing, exercise, yoga, meditation, prayer, etc...they all help.)
4. If your seizures are triggered by flashing/flickering lights (computer games, flickering lights in stores, strobe lights) or patterns (repeating patterns like checkerboards for example) , or if those things make you feel queasy or sick, you might be photosensitive and you might want to get blue polarized lenses. I don't mean the lenses with a blue tinting applied to them...I mean the ones made of actual blue glass. Many have found that these lenses can cut their number of seizures by 50% or more..
5. Keeping track of your cycle, if you're a woman, should help you figure out if you are catamenial. If so, the hormone fluctuations can trigger your seizures and you might want to consider getting a hormone cream to help even out the hormones.
6. cut out all caffiene (this includes tea, sodas, coffee, energy drinks, and for some people chocolate.)
7. Do NOT use any OTC meds (antihistamines can trigger seizures...and other OTC's can interact with our meds.)
8. If you are taking meds, check with the pharmacist or your doc to find if there are any foods or meds you should avoid. some meds are not absorbed well if a person eats grapefruit or drinks grapefruit juice. Also, birth control might not be as effective if you are on AED's.
9. You might want to cut way back on any alcohol or illegal drug use. Some people find that alcohol or pot actually increase their seizures.
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dfwtexas
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I got diagnosed last year. This site has been great in helping me learn. One other food item, stay away from Grapefruit and grapefruit juice...it will keep your meds from working.
I am photosentsive as many others on here. It seems to vary from person to person, so I have learned what light sources trigger my seizures.
welcome!
I am photosentsive as many others on here. It seems to vary from person to person, so I have learned what light sources trigger my seizures.
welcome!
midge18
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Great advice!
Thanks everyone, its a bit daunting at the minute, because no one in my immediate family has epilepsy so we're trying to just see what works and what doesnt. The jounal plan sounds great skillefer thanks and I never heard bout grapefruit juice! does it stop you absorbing the meds or what? I heard that birth control can affect the med absorption too, that true?
Thanks everyone, its a bit daunting at the minute, because no one in my immediate family has epilepsy so we're trying to just see what works and what doesnt. The jounal plan sounds great skillefer thanks
and I never heard bout grapefruit juice! does it stop you absorbing the meds or what? I heard that birth control can affect the med absorption too, that true?
RobinN
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Hi Midge. Glad you found this safe home.
We are finding that my daughters seizures are due to blood sugar levels. It has taken 2.5 yrs to sort this out, but additives, and the Standard American Diet certainly didn't help matters. I didn't know that insulin can also cause problems with hormones too. So my daughters seizures occur with her cycle. It is a puzzle, however the journal or calendar really is a great tool to put the pieces together.
We are finding that my daughters seizures are due to blood sugar levels. It has taken 2.5 yrs to sort this out, but additives, and the Standard American Diet certainly didn't help matters. I didn't know that insulin can also cause problems with hormones too. So my daughters seizures occur with her cycle. It is a puzzle, however the journal or calendar really is a great tool to put the pieces together.
skillefer
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As for birth control, it depends on the type being used. but yes, it can effect the absorption of your meds...although it's usually the other way around. Also, as fo rthe low blood sugar...I don't have diabetes. My maternal grandfather was. My mom has a strange reaction to too much sugar, which my doc said sounds like prediabetes...and then I have hypoglycemia which can lead to prediabetes which can then become diabetes...
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Hi Midge, belated welcome to the forum. :hello:
Don't be shy. We're a friendly group here. Feel free to browse around and jump in on any conversation. That's the beauty of this forum format - conversations can last years and are open to all who are interested. The more you participate, the more you get out of it.
Don't be shy. We're a friendly group here. Feel free to browse around and jump in on any conversation. That's the beauty of this forum format - conversations can last years and are open to all who are interested. The more you participate, the more you get out of it.
Rhea
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Hi Helen! I'm new here too and new to the world of E. This site has been a tremendous help to me, and my family. It is a daunting task to wade through all the myths and wive's tales of seizures, but this site is honest, factual, helpful and "warm and fuzzy". There are many sites recommended on here that are worth checking out, as a lot of people have more "experience" than a newbie to point us in the right direction. So, pull up a chair, and learn. And don't forget to check out the humorous thread too. Really helps me on a down day, to look up and smile. Or LOL sometimes!