I have a few questions...

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Hello! I am a sixteen year old girl with myoclonic epilepsy. I have a few questions that I'm worried to ask others... 1. I am taking Keppra at the moment. When I drink caffeine, I feel 'strange' and although my body wants to have a seizure; its a very indescribable feeling. I think this is an aura caused by Keppra and caffeine not mixing very well, does anybody else have these? 2. Keppra does come with side effects, and one of the uncommon but named effects is 'decrease in mood.' I am finding it hard to tell what is a teenage mood swing, or whether it is the Keppra causing me to feel in a depressed state of mind. Am I overthinking it? 3. I have been taking medication for about two years. I haven't had a seizure while I've been taking it. I'm worried about the hospital trying to take the medication away and that by coming off my Keppra, I will start having seizures again. Does anyone have any experiences with coming off any AED's? Thank you :)

Comments

Hi Shannon,I was diagnosed

Submitted by penpal59 on Sun, 2019-04-28 - 23:24

Hi Shannon,I was diagnosed with epilepsy when I was 14 and wasn't stabilized till I was 18. Getting the right mix of medication is a real lottery at your age so you are doing really well to have found the right combination of AEDs to stop your seizures at just 16. I've read that Keppra is a medication which is used to control epilepsy but exactly how the drug does this is unclear. Therefore I would say that its effectiveness is highly dependent upon all other things remaining fairly constant (such as diet, weight, stress levels etc)Mood swings are a natural part of life for most people so you could be overthinking things. So how about you keep a record of when your mood swings happen and you might start to see a pattern which can be explained by something else. If you can't see a pattern you could be suffering with a bit of depression and a mood stabilizer could help you, either in the form of a vitamin or on a prescription from your GP. But remember the interaction of a new drug with Keppra might not be beneficial to your overall health and you could have another seizure. So be cautious.I take Keppra to control my grand mal epliepsy and experience a side effect about every 4 months where I tend to seriously over-react to difficult situations and get angry. I recognised this by keeping a diary and now I'm taking additional Vitamins to overcome this. I've taken Vitamin B and Fish Oil to improve my concentration for close to 20 years and will continue to do so. I don't plan to reduce the dosage of Keppra that I take as I have been seizure free for a long time now and its much easier to live with the side effects of that drug than to risk having another seizure by changing the dose. Coming off AED's or reducing the dosage may be necessary if you experience a significant increase or decrease in weight. Otherwise I really can't see any reason to vary the dosage of an AED which is otherwise effective in preventing seizures so I doubt the hospital would change the dose of Keppra you are on. But if it really concerns you, state your case as best you can to your Doctor and keep on gathering as much information on the topic as you can. If I were you I'd probably stick with the current dosage of Keppra, steer clear of caffeine for a while, take a regular dose of Vitamin B (which could take up to 6 weeks to take full effect - so be patient) and keep a diary of the mood swings. All the best

Hi Shannon,I was diagnosed with epilepsy when I was 14 and wasn't stabilized till I was 18. Getting the right mix of medication is a real lottery at your age so you are doing really well to have found the right combination of AEDs to stop your seizures at just 16. I've read that Keppra is a medication which is used to control epilepsy but exactly how the drug does this is unclear. Therefore I would say that its effectiveness is highly dependent upon all other things remaining fairly constant (such as diet, weight, stress levels etc)Mood swings are a natural part of life for most people so you could be overthinking things. So how about you keep a record of when your mood swings happen and you might start to see a pattern which can be explained by something else. If you can't see a pattern you could be suffering with a bit of depression and a mood stabilizer could help you, either in the form of a vitamin or on a prescription from your GP. But remember the interaction of a new drug with Keppra might not be beneficial to your overall health and you could have another seizure. So be cautious.I take Keppra to control my grand mal epliepsy and experience a side effect about every 4 months  where I tend to seriously over-react to difficult situations and get angry. I recognised this by keeping a diary and now I'm taking additional Vitamins to overcome this. I've taken Vitamin B and Fish Oil to improve my concentration for close to 20 years and will continue to do so. I don't plan to reduce the dosage of Keppra that I take as I have been seizure free for a long time now and its much easier to live with the side effects of that drug than to risk having another seizure by changing the dose. Coming off AED's or reducing the dosage may be necessary if you experience a significant increase or decrease in weight. Otherwise I really can't see any reason to vary the dosage of an AED which is otherwise effective in preventing seizures so I doubt the hospital would change the dose of Keppra you are on. But if it really concerns you, state your case as best you can to your Doctor and keep on gathering as much information on the topic as you can. If I were you I'd probably stick with the current dosage of Keppra, steer clear of caffeine for a while, take a regular dose of Vitamin B (which could take up to 6 weeks to take full effect - so be patient) and keep a diary of the mood swings. All the best

Hi Shannon,I was diagnosed with epilepsy when I was 14 and wasn't stabilized till I was 18. Getting the right mix of medication is a real lottery at your age so you are doing really well to have found the right combination of AEDs to stop your seizures at just 16. I've read that Keppra is a medication which is used to control epilepsy but exactly how the drug does this is unclear. Therefore I would say that its effectiveness is highly dependent upon all other things remaining fairly constant (such as diet, weight, stress levels etc)Mood swings are a natural part of life for most people so you could be overthinking things. So how about you keep a record of when your mood swings happen and you might start to see a pattern which can be explained by something else. If you can't see a pattern you could be suffering with a bit of depression and a mood stabilizer could help you, either in the form of a vitamin or on a prescription from your GP. But remember the interaction of a new drug with Keppra might not be beneficial to your overall health and you could have another seizure. So be cautious.I take Keppra to control my grand mal epliepsy and experience a side effect about every 4 months where I tend to seriously over-react to difficult situations and get angry. I recognised this by keeping a diary and now I'm taking additional Vitamins to overcome this. I've taken Vitamin B and Fish Oil to improve my concentration for close to 20 years and will continue to do so. I don't plan to reduce the dosage of Keppra that I take as I have been seizure free for a long time now and its much easier to live with the side effects of that drug than to risk having another seizure by changing the dose. Coming off AED's or reducing the dosage may be necessary if you experience a significant increase or decrease in weight. Otherwise I really can't see any reason to vary the dosage of an AED which is otherwise effective in preventing seizures so I doubt the hospital would change the dose of Keppra you are on. But if it really concerns you, state your case as best you can to your Doctor and keep on gathering as much information on the topic as you can. If I were you I'd probably stick with the current dosage of Keppra, steer clear of caffeine for a while, take a regular dose of Vitamin B (which could take up to 6 weeks to take full effect - so be patient) and keep a diary of the mood swings. All the best

Hi Shannon:So one way to get

Submitted by Jazz101 on Sat, 2019-05-04 - 17:29

Hi Shannon:So one way to get a better idea as to whether it's the medication or just being a teenager or maybe both is to try to figure out the frequency with which you get that depressed feeling, relative to how you dealt with things prior to being on the medication. Everybody's teenage years are, well, quite an experience. As a result, other things can probably add to the amount of things you find yourself being particular about. I'm glad you tossed the question about whether you're "overthinking it." I would say the only way to figure that out is to take a note of the issues that probably annoy you very easily today and do a comparison to what easily annoyed you, say, a year-and-a-half ago. Also, try to ease on the caffeine just to see if that makes a difference. Again, just tests to help you figure out what might be the governing issue. I have a niece who is a few years ahead of you and she isn't on any medication yet she is very particular. So it's hard to say, without doing comparisons to how you dealt with things about a year-and-a-half ago, what might really be the issue.What I can say to you is that overthinking is something that can definitely do a job on any of us. As we get into the game of pondering too many things, well, at times we can really get carried away. So what will also help you to assess whether the Keppra might be the governing factor is to also try to minimize guessing.For example, I am currently changing medication. I am letting go of the Keppra and I'm already on one called Onfi. My first task was to make sure I didn't guess the results, meaning whether the Onfi would work or whether the transfer would also be easy. I just tried to remain practical that there is always a possibility that the transition might not be smooth. As a result, no guessing either way in terms of results. Just a "let's see how it goes" with a plan attached.The results in my case is that I was able to go from 1500MG Keppra to 500MG with everything in my favor. But as we lowered the Keppra from 500 to 250 daily, I sensed an aura and I immediately went back to 500MG of the Keppra. I now have two remaining options. I can either remain on the 500MG of the Keppra or we can increase the Onfi from 20MG daily to 30MG daily and try to let go of the remaining 500MG of Keppra. So, as you can see, there is nothing wrong with changing medication. It's just that the transition isn't always smooth. This is why I am suggesting that you try to assess whether it's the Keppra. And, if, after a month or two you still feel the same way, your neurologist may suggest changing from Keppra to something else. The trick with that is you have to also remain practical that that transfer might have it's own setbacks, as mine has displayed. Try to look at it this way Shannon. Think of things at your age that you were successful at balancing. It might be hard to find because in anybody's teen going on to 21, well, we usually feel like we control everything. That was my feeling at your age. And I see the same in my niece and my nephew. It just comes with that phase in life. So yes, I can understand how this is probably affecting you, the "should I?" versus "shouldn't I?" When my niece or my nephew sees their team losing, hey, it's "give them some space" time. :)As a result I can totally understand you feeling like you're caught between a rock and a hard place. That means try not to make any decisions in a hurry. Take a look at the entire picture to see if it's the Keppra. That means going back about a year ago to see how you felt then. Also, try to edit the caffeine if you feel it might be related. And last, but not least, try to minimize the guessing. Guessing only takes us places. As a result, see how you feel about a month plus from now after trying those things. Like me, try not to guess how you will feel. Just see how you feel. That way you will get a better sense as to whether it's the medication that you should change. And I see Jane also suggested some other things to try to get a better understanding as to whether it's just the medication, including keeping a diary of the mood swings. Best to you Shannon.

Hi Shannon:So one way to get a better idea as to whether it's the medication or just being a teenager or maybe both is to try to figure out the frequency with which you get that depressed feeling, relative to how you dealt with things prior to being on the medication. Everybody's teenage years are, well, quite an experience. As a result, other things can probably add to the amount of things you find yourself being particular about. I'm glad you tossed the question about whether you're "overthinking it." I would say the only way to figure that out is to take a note of the issues that probably annoy you very easily today and do a comparison to what easily annoyed you, say, a year-and-a-half ago. Also, try to ease on the caffeine just to see if that makes a difference. Again, just tests to help you figure out what might be the governing issue. I have a niece who is a few years ahead of you and she isn't on any medication yet she is very particular. So it's hard to say, without doing comparisons to how you dealt with things about a year-and-a-half ago, what might really be the issue.What I can say to you is that overthinking is something that can definitely do a job on any of us. As we get into the game of pondering too many things, well, at times we can really get carried away. So what will also help you to assess whether the Keppra might be the governing factor is to also try to minimize guessing.For example, I am currently changing medication. I am letting go of the Keppra and I'm already on one called Onfi. My first task was to make sure I didn't guess the results, meaning whether the Onfi would work or whether the transfer would also be easy. I just tried to remain practical that there is always a possibility that the transition might not be smooth. As a result, no guessing either way in terms of results. Just a "let's see how it goes" with a plan attached.The results in my case is that I was able to go from 1500MG Keppra to 500MG with everything in my favor. But as we lowered the Keppra from 500 to 250 daily, I sensed an aura and I immediately went back to 500MG of the Keppra. I now have two remaining options. I can either remain on the 500MG of the Keppra or we can increase the Onfi from 20MG daily to 30MG daily and try to let go of the remaining 500MG of Keppra. So, as you can see, there is nothing wrong with changing medication. It's just that the transition isn't always smooth. This is why I am suggesting that you try to assess whether it's the Keppra. And, if, after a month or two you still feel the same way, your neurologist may suggest changing from Keppra to something else. The trick with that is you have to also remain practical that that transfer might have it's own setbacks, as mine has displayed. Try to look at it this way Shannon. Think of things at your age that you were successful at balancing. It might be hard to find because in anybody's teen going on to 21, well, we usually feel like we control everything. That was my feeling at your age. And I see the same in my niece and my nephew. It just comes with that phase in life. So yes, I can understand how this is probably affecting you, the "should I?" versus "shouldn't I?" When my niece or my nephew sees their team losing, hey, it's "give them some space" time. :)As a result I can totally understand you feeling like you're caught between a rock and a hard place. That means try not to make any decisions in a hurry. Take a look at the entire picture to see if it's the Keppra. That means going back about a year ago to see how you felt then. Also, try to edit the caffeine if you feel it might be related. And last, but not least, try to minimize the guessing. Guessing only takes us places. As a result, see how you feel about a month plus from now after trying those things. Like me, try not to guess how you will feel. Just see how you feel. That way you will get a better sense as to whether it's the medication that you should change. And I see Jane also suggested some other things to try to get a better understanding as to whether it's just the medication, including keeping a diary of the mood swings. Best to you Shannon.

Hi Shannon:So one way to get a better idea as to whether it's the medication or just being a teenager or maybe both is to try to figure out the frequency with which you get that depressed feeling, relative to how you dealt with things prior to being on the medication. Everybody's teenage years are, well, quite an experience. As a result, other things can probably add to the amount of things you find yourself being particular about. I'm glad you tossed the question about whether you're "overthinking it." I would say the only way to figure that out is to take a note of the issues that probably annoy you very easily today and do a comparison to what easily annoyed you, say, a year-and-a-half ago. Also, try to ease on the caffeine just to see if that makes a difference. Again, just tests to help you figure out what might be the governing issue. I have a niece who is a few years ahead of you and she isn't on any medication yet she is very particular. So it's hard to say, without doing comparisons to how you dealt with things about a year-and-a-half ago, what might really be the issue.What I can say to you is that overthinking is something that can definitely do a job on any of us. As we get into the game of pondering too many things, well, at times we can really get carried away. So what will also help you to assess whether the Keppra might be the governing factor is to also try to minimize guessing.For example, I am currently changing medication. I am letting go of the Keppra and I'm already on one called Onfi. My first task was to make sure I didn't guess the results, meaning whether the Onfi would work or whether the transfer would also be easy. I just tried to remain practical that there is always a possibility that the transition might not be smooth. As a result, no guessing either way in terms of results. Just a "let's see how it goes" with a plan attached.The results in my case is that I was able to go from 1500MG Keppra to 500MG with everything in my favor. But as we lowered the Keppra from 500 to 250 daily, I sensed an aura and I immediately went back to 500MG of the Keppra. I now have two remaining options. I can either remain on the 500MG of the Keppra or we can increase the Onfi from 20MG daily to 30MG daily and try to let go of the remaining 500MG of Keppra. So, as you can see, there is nothing wrong with changing medication. It's just that the transition isn't always smooth. This is why I am suggesting that you try to assess whether it's the Keppra. And, if, after a month or two you still feel the same way, your neurologist may suggest changing from Keppra to something else. The trick with that is you have to also remain practical that that transfer might have it's own setbacks, as mine has displayed. Try to look at it this way Shannon. Think of things at your age that you were successful at balancing. It might be hard to find because in anybody's teen going on to 21, well, we usually feel like we control everything. That was my feeling at your age. And I see the same in my niece and my nephew. It just comes with that phase in life. So yes, I can understand how this is probably affecting you, the "should I?" versus "shouldn't I?" When my niece or my nephew sees their team losing, hey, it's "give them some space" time. :)As a result I can totally understand you feeling like you're caught between a rock and a hard place. That means try not to make any decisions in a hurry. Take a look at the entire picture to see if it's the Keppra. That means going back about a year ago to see how you felt then. Also, try to edit the caffeine if you feel it might be related. And last, but not least, try to minimize the guessing. Guessing only takes us places. As a result, see how you feel about a month plus from now after trying those things. Like me, try not to guess how you will feel. Just see how you feel. That way you will get a better sense as to whether it's the medication that you should change. And I see Jane also suggested some other things to try to get a better understanding as to whether it's just the medication, including keeping a diary of the mood swings. Best to you Shannon.