I started having grand mal seizures at 12 and am now 25. I was on Depakote after 4 of them. I was on Depakote for almost 5 years and was seizure free. I had a normal EEG and the neurologist weaned me off the Depakote. I had a seizure shortly thereafter. I was back on Depakote and have been for the past 8-9 years. My neurologist and gyno want me to change medications in case I get pregnant in the near future. The neurologist is switching me from Depakote to Lamictal XR. I am now on my first week of no Depakote and only Lamictal XR (200 mg/day). I am terrified of the switch, mainly because my seizures were controlled so well when I was on Depakote. I am looking to speak with people who have switched medications, specifically from Depakote to Lamictal/Lamictal XR. Any advice? I am terrified of leading my normal life - taking baths when no one is home, driving, swimming, riding my bike, cooking when no one is home, etc.
Depakote to Lamictal XR
- Thread starter cmblanc2
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Hi cmblanc2, welcome to CWE!
I'm currently on Lamictal. I was on Zonegran prior to the Lamictal, and the switch was done very slowly, over the course of several months. (In general with Lamictal it's important to go slowly in order to lower the risk of allergic reaction.) I had no problems during the transition, and none since (other than the side effects that seem to come with all AEDs). Transition times with meds can be tricky, so it doesn't hurt to be extra careful -- but do your best not to be terrified about it. Just think of it as being proactive. Pay attention to how you are feeling, but don't obsess. Make sure to keep your overall health on an even keel (good sleep, proper nutrition, etc.), but don't make yourself miserable. If you can take half an hour once or twice today to "meditate", that can go a long way both in keeping you calm, and in preventing seizures. You don't actually have to meditate, just unplugging, being still, closing your eyes, and breathing normally can do the trick. If you are anxious about any of the activities you mention, temporarily avoid the ones you can, get friends or family to accompany you for others, or check in on you from time to time. And it might help to keep a journal tracking how you're feeling on the Lamictal.
BTW, I live alone, and have had about 20 tonic-clonics over the last decade. Except for right after the initial seizures, I've always felt comfortable driving, biking, swimming alone, cooking, bathing, etc. (I wouldn't mind company in the shower, but that's another story
) I'm not saying that you shouldn't consider any risks while you're seeing how you feel on the Lamictal, just that you shouldn't assume that something's going to happen, or let your worries overwhelm everything else.
I haven't been on Depakote, so I can't speak specifically to the transition from it to Lamictal, but I can say that Lamictal has a good record with pregnancy. If you are considering getting pregnant, make sure you are taking a folic acid supplement, especially important if you are on AEDs.
Best,
Nakamova
I'm currently on Lamictal. I was on Zonegran prior to the Lamictal, and the switch was done very slowly, over the course of several months. (In general with Lamictal it's important to go slowly in order to lower the risk of allergic reaction.) I had no problems during the transition, and none since (other than the side effects that seem to come with all AEDs). Transition times with meds can be tricky, so it doesn't hurt to be extra careful -- but do your best not to be terrified about it. Just think of it as being proactive. Pay attention to how you are feeling, but don't obsess. Make sure to keep your overall health on an even keel (good sleep, proper nutrition, etc.), but don't make yourself miserable. If you can take half an hour once or twice today to "meditate", that can go a long way both in keeping you calm, and in preventing seizures. You don't actually have to meditate, just unplugging, being still, closing your eyes, and breathing normally can do the trick. If you are anxious about any of the activities you mention, temporarily avoid the ones you can, get friends or family to accompany you for others, or check in on you from time to time. And it might help to keep a journal tracking how you're feeling on the Lamictal.
BTW, I live alone, and have had about 20 tonic-clonics over the last decade. Except for right after the initial seizures, I've always felt comfortable driving, biking, swimming alone, cooking, bathing, etc. (I wouldn't mind company in the shower, but that's another story
) I'm not saying that you shouldn't consider any risks while you're seeing how you feel on the Lamictal, just that you shouldn't assume that something's going to happen, or let your worries overwhelm everything else.I haven't been on Depakote, so I can't speak specifically to the transition from it to Lamictal, but I can say that Lamictal has a good record with pregnancy. If you are considering getting pregnant, make sure you are taking a folic acid supplement, especially important if you are on AEDs.
Best,
Nakamova
Thank you so much, Nakamova. It is so comforting to hear from other people who have also switched AEDs. My friends and family tell me not to worry, but I am thinking, Easy for you to say! I know the feelings I am feeling are normal and that it is probably understandable that after taking the same AED for 13 years straight, I would feel a little "off" at first. I will definitely be taking care of all aspects of my health more closely than ever. Again, I appreciate your comforting words of advice.
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One thing that bodes well is that the Depakote worked for you. If your seizures were controlled with the first drug ever prescribed for them, it suggests that you are "medication-responsive" and that your seizures will respond to the next drug as well.
Juts curious: Will you be staying at the 200mg dose of the Lamictal or going higher? Some docs consider 200mg a relatively low dose. (I'm at 175mg, so I'm all for low doses where possible).
If you're unsure if what you're experiencing as you adjust to the Lamictal is "normal", feel free to check in here at CWE. Chances are someone's felt the same thing. For me, the first two months on Lamictal were different than the ones that followed.
Juts curious: Will you be staying at the 200mg dose of the Lamictal or going higher? Some docs consider 200mg a relatively low dose. (I'm at 175mg, so I'm all for low doses where possible).
If you're unsure if what you're experiencing as you adjust to the Lamictal is "normal", feel free to check in here at CWE. Chances are someone's felt the same thing. For me, the first two months on Lamictal were different than the ones that followed.
Hello again! Yes, the Depakote worked very well for me and any doctor that I saw was extremely surprised about how well I did on the low dosage of Depakote. My "not normal" feelings right now are headaches, dizziness/feeling uncoordinated on occasion, occasional tingle in a hand or foot, and forgetfulness. So far today I have not had a headache, but the second and third days I had headaches often. I notice these feelings are often exacerbated when I delay my eating schedule or do not eat every few hours.
I suppose many of these feelings, if not all, are normal for someone no longer taking something they were taking for 13 years. I also try to tell myself that people without epilepsy forget things - where they put their keys, etc., so it is not specific to me. But it all makes me paranoid right now I guess. I hope all these feelings go away over the next few months. I plan to call the nurse tomorrow just to make sure this is not unique to me.
One side effect that I actually enjoy is that I have already seemed to lose some weight during this titration (sp?) process. Depakote, especially these past few years, made me retain water, feel bloated often, and gain some weight. I hear this is common for Depakote and am glad to see some of this lessen with the Lamictal already. I am not sure if Zonegran had similar effects as Depakote, but if so, did you find this was the case when you switched to Lamictal?
I am scheduled to see my neurologist again in a few weeks after I get some blood tests to ensure the meds are not affecting my liver and whatever else they check for when you are on AEDs. I guess he will determine if I stay on this dosage or not once he sees my bloodwork and talks to me.
It is reassuring to hear that if my results were so good on Depakote that it is likely I will respond well to this. Were your seizures completely controlled on your previous medication? Why did your doctor have you switch? Did you wait any period of time before driving when you switched to the Lamictal? I am wondering when a "safe" time is to gauge whether the meds are effective and whether it is safe to drive. I guess I will talk to my doctor about that too but I feel this is one of those questions a doctor won't give a straight answer to.
I admire your bravery and your outlook on life. I hope that once this whole transition is over, I can feel as confident and positive as I did on Depakote. It is inspirational to hear from people such as yourself. I am glad I joined this forum because it is so difficult for people without epilepsy to understand all the feelings that come along with it.
One more question - does your employer know about your epilepsy? I have never told mine just because my seizures were completely controlled with Depakote. I don't want my boss to be alarmed or not know what to do if something happens during this transition, but I feel people look at me differently once they know and I hate the feeling that people treat me differently or even pity me. Any advice you have for me regarding how to approach that would be greatly appreciated.
I suppose many of these feelings, if not all, are normal for someone no longer taking something they were taking for 13 years. I also try to tell myself that people without epilepsy forget things - where they put their keys, etc., so it is not specific to me. But it all makes me paranoid right now I guess. I hope all these feelings go away over the next few months. I plan to call the nurse tomorrow just to make sure this is not unique to me.
One side effect that I actually enjoy is that I have already seemed to lose some weight during this titration (sp?) process. Depakote, especially these past few years, made me retain water, feel bloated often, and gain some weight. I hear this is common for Depakote and am glad to see some of this lessen with the Lamictal already. I am not sure if Zonegran had similar effects as Depakote, but if so, did you find this was the case when you switched to Lamictal?
I am scheduled to see my neurologist again in a few weeks after I get some blood tests to ensure the meds are not affecting my liver and whatever else they check for when you are on AEDs. I guess he will determine if I stay on this dosage or not once he sees my bloodwork and talks to me.
It is reassuring to hear that if my results were so good on Depakote that it is likely I will respond well to this. Were your seizures completely controlled on your previous medication? Why did your doctor have you switch? Did you wait any period of time before driving when you switched to the Lamictal? I am wondering when a "safe" time is to gauge whether the meds are effective and whether it is safe to drive. I guess I will talk to my doctor about that too but I feel this is one of those questions a doctor won't give a straight answer to.
I admire your bravery and your outlook on life. I hope that once this whole transition is over, I can feel as confident and positive as I did on Depakote. It is inspirational to hear from people such as yourself. I am glad I joined this forum because it is so difficult for people without epilepsy to understand all the feelings that come along with it.
One more question - does your employer know about your epilepsy? I have never told mine just because my seizures were completely controlled with Depakote. I don't want my boss to be alarmed or not know what to do if something happens during this transition, but I feel people look at me differently once they know and I hate the feeling that people treat me differently or even pity me. Any advice you have for me regarding how to approach that would be greatly appreciated.
i actually put the appreviation for spelling, not simple partial, but i guess the forum automatically spells out things that could be abbreviations for epilepsy-related terms? i was not sure if titration was spelled right. Just wanted to make sure you were not confused by that. thanks again!
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The headaches and dizziness you describe are what I experienced during the first month or so on Lamictal. I'm usually an ibuprofen person, but the Lamictal headaches responded best to Tylenol, so you might want to give that a shot. The dizziness felt a bit like being on a boat rather than the "I'm going to faint" kind. And it eventually went away.
Unfortunately for me, I seemed to have gained weight on Lamictal (about 10 lbs). In part, it's because I lost weight on the Zonegran, which worked as an appetite suppressant and also irritated my stomach. In fact, the Zonegran made it so hard for me to eat that it gave me low blood sugar -- which is a trigger for me -- and I ended up having a seizure. I could tell the Zonegran was causing problems, and I was planning on switching off of it before I had the seizure, but couldn't get an appointment with my neurologist soon enough.
Before I was on the Zonegran, I was on Dilantin for about 7 years, with complete seizure control. My neuro wanted me off of the Dilantin because of the potential for long-term side effects on bone density. Rather than switch meds right away, I tried going med-free (unsuccessfully as it turned out) and that's when I went on the Zonegran. And from there to the Lamictal.
Some people lose weight on an AED, and some people will gain on the same med -- it's unpredictable. If you find yourself losing a lot of weight on the Lamictal, take care to make sure you are getting enough nutrition over the course of the day. Unfortunately, the forgetfulness can be a side effect of most of the AEDs (and also if you're not getting enough to eat). If you feel things getting worse, make a note of it. If any side effect starts seriously affecting your quality of life, then you have to make the call on whether the med is worth it. I haven't had any noticeable memory problems while on Lamictal, but my dose is low, and I actually backed off from the original level I was at (slowly tapering from 250mg to the 175mg I'm on now).
After a month of no driving (in part because of the seizure) I resumed driving even though I was still tapering off the Zonegran and onto the Lamictal. I could tell that the Lamictal was working. And I felt alert and confident.
I'm lucky enough to be self-employed, so I haven't had the issue of revealing my epilepsy to my employer. I know other members here have wrestled with this question. On the one hand, you want to maintain a certain privacy and avoid being unfairly stigmatized. On the other hand, it can be helpful if someone at your work knows how to respond if you actually do have a seizure. And there's always the possibility you might actually educate the people around you about epilepsy, and dispel some of the myths and ignorance. I think at minimum, it's a good idea to carry a card with emergency contact info in your wallet, so someone who does know your history can be reached if necessary.
In general, I tend to not tell strangers about my epilepsy. (No one in my apartment building knows for instance). Most of my friends and family know, and it's no big deal. Because my seizures are well-controlled, at this point I don't go out of my way to mention them. I will talk about my epilepsy and epilepsy in general if it comes up in conversation, or if I think someone needs to be set straight about it...
Unfortunately for me, I seemed to have gained weight on Lamictal (about 10 lbs). In part, it's because I lost weight on the Zonegran, which worked as an appetite suppressant and also irritated my stomach. In fact, the Zonegran made it so hard for me to eat that it gave me low blood sugar -- which is a trigger for me -- and I ended up having a seizure. I could tell the Zonegran was causing problems, and I was planning on switching off of it before I had the seizure, but couldn't get an appointment with my neurologist soon enough.
Before I was on the Zonegran, I was on Dilantin for about 7 years, with complete seizure control. My neuro wanted me off of the Dilantin because of the potential for long-term side effects on bone density. Rather than switch meds right away, I tried going med-free (unsuccessfully as it turned out) and that's when I went on the Zonegran. And from there to the Lamictal.
Some people lose weight on an AED, and some people will gain on the same med -- it's unpredictable. If you find yourself losing a lot of weight on the Lamictal, take care to make sure you are getting enough nutrition over the course of the day. Unfortunately, the forgetfulness can be a side effect of most of the AEDs (and also if you're not getting enough to eat). If you feel things getting worse, make a note of it. If any side effect starts seriously affecting your quality of life, then you have to make the call on whether the med is worth it. I haven't had any noticeable memory problems while on Lamictal, but my dose is low, and I actually backed off from the original level I was at (slowly tapering from 250mg to the 175mg I'm on now).
After a month of no driving (in part because of the seizure) I resumed driving even though I was still tapering off the Zonegran and onto the Lamictal. I could tell that the Lamictal was working. And I felt alert and confident.
I'm lucky enough to be self-employed, so I haven't had the issue of revealing my epilepsy to my employer. I know other members here have wrestled with this question. On the one hand, you want to maintain a certain privacy and avoid being unfairly stigmatized. On the other hand, it can be helpful if someone at your work knows how to respond if you actually do have a seizure. And there's always the possibility you might actually educate the people around you about epilepsy, and dispel some of the myths and ignorance. I think at minimum, it's a good idea to carry a card with emergency contact info in your wallet, so someone who does know your history can be reached if necessary.
In general, I tend to not tell strangers about my epilepsy. (No one in my apartment building knows for instance). Most of my friends and family know, and it's no big deal. Because my seizures are well-controlled, at this point I don't go out of my way to mention them. I will talk about my epilepsy and epilepsy in general if it comes up in conversation, or if I think someone needs to be set straight about it...
Most of the effects have lessened today. I get a headache about every hour but other than that I (thankfully) do not have much to complain about. I also told my boss about it...he seemed freaked out at first. I guess he is okay with it now. Thanks for all your advice.