Lamictal opinions/ALL. Good & Bad Sought

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k2s4ever

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Just got changed to Lamictal today, low dose-but don't start for one week to allow a taper off Topamax, as I got a terrible eyelid and lower facial twitch side effect from the Topamax.(well, never had ones like that until on it, so just drawing the conclusion it was a side effect of Topamax, so neuro is discontinuing it) In the meantime, I remain on Keppra. My sole symptom that rendered E as a suspicion is an olfactory aura of an unpleasant burn smell-been going on four years. Duration of the aura is 12 hours a day and sometimes goes past 24 hours and has been as long as 38 hours, leading neuro to have to wonder how I could be having constant electrical charges and not lead to a big generalized event, which I never have. I've never lost consciousness and the auras go nowhere. So the deal is we're not so sure I have SPS. He's never "formally" diagnosed me with it, but has been prescribing me AED's for suspected E. When I also reported headache issues, and then the aura also being triggered by an external smell, the possibility I have migraine entered the arena, so we've been trying AED's that are also used for migraine, once the Keppra alone did nothing and I was reporting an increase in headaches and history of some severe ones. Well, since I've been on Topamax, and then an increase of it, with these wicked twitches, it's basically, NEXT. Lamictal it is, even though it's not classically known for migraines. Well-I'm not thrilled with the rash side effect possibility (much less the fact that in rare cases it can be very serious). I'm half tempted to call the office and say forget it-try something else. Is Lamictal worth the risk of trying? After the facial twitches, I'm not thrilled, but Keppra has been fine, and Depakote ER was also fine. So maybe Lamictal should be fine. I don't usually react to medications. I take others for some other health issues with no problem. Topamax was the only time I ever had an issue, but it only takes once to make me leery. I'm also tired of the ongoing auras. They're less, but not gone. And at this point, the leaning is much more that I have some weird migraine variant. My neuro in fact is very much thinking at this point I don't have E, but not totally ruling it out. So, anyone here successfully on Lamictal?
 
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I am. Three years seizure-free and counting...
 
k2s4ever said:
Just got changed to Lamictal today, low dose-but don't start for one week to allow a taper off Topamax, as I got a terrible facial twitch side effect from the Topamax.(well, never had ones like that until on it, so just drawing the conclusion it was a side effect of Topamax, so neuro is discontinuing it) In the meantime, I remain on Keppra. My sole symptom is an olfactory aura of an unpleasant burn smell-been going on four years. Duration of the aura is 12 hours a day and sometimes goes past 24 hours and has been as long as 38 hours, leading neuro to have to wonder how I could be having constant electrical charges and not lead to a big generalized event, which I never have. I've never lost consciousness and the auras go nowhere. So the deal is we're not so sure I have SPS. He's never "formally" diagnosed me with it, but has been prescribing me AED's for suspected E. When I also reported headache issues, and then the aura also being triggered by an external smell, the possibility I have migraine entered the arena, so we've been trying AED's that are also used for migraine, once the Keppra alone did nothing and I was reporting an increase in headaches and history of some severe ones. Well, since I've been on Topamax, and then an increase of it, I had wicked facial twitches, so basically, NEXT. Lamictal it is, even though it's not classically known for migraines. Well-I'm not thrilled with the rash side effect possibility (much less the fact that in rare cases it can be very serious). I'm half tempted to call the office and say forget it-try something else. Is Lamictal worth the risk of trying? After the facial twitches, I'm not thrilled, but Keppra has been fine, and Depakote ER was also fine. So maybe Lamictal should be fine. I don't usually react to medications. I take others for some other health issues with no problem. Topamax was the only time I ever had an issue, but it only takes once to make me leery. I'm also tired of the ongoing auras. They're less, but not gone. And at this point, the leaning is much more that I have some weird migraine variant. But I am still here as E is not totally ruled out. So, anyone here successfully on Lamictal?
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well, I will tell you my experience with Lamictal. Before being put on Lamictal, i was on Keppra XR and Carbatrol ER. In March I had a VEEG and was taken off the Carbatrol. After the VEEG, I was put back on the Keppra XR. Then Vimpat was added, and that didnt go so well. I got off that due to the mood changes. I then was put on Lamictal. Within a week, I noticed alot of acne on my chin and law line. Started out as looking like normal acne, but then got worse. Started to scab over and look more like sores. Along with that, came swollen and tender glands in my neck area. I was on Lamictal for 16 days, and that day I went to my Primary care dr, where they said I was having an allergic reaction. Now my neurologist Im seeing now, said that in order for me to have an allergic reaction, I had to have a rash. My Primary care dr said that is not true at all. They tested me for any kind of infections, and drew blood to check my white and red blood cell counts. All came back negative. I was taken off the Lamictal, and within three days of not being on the Lamictal no longer, my swelling had gone down alot! The tenderness got better and within a week I was back to my normal self. I know alot of people that have had good luck with Lamictal though, I just wasnt one of the lucky ones.

As for the headaches, I was on Keppra (500mg tablets) for years. From the age of 18 yrs old through last year in November (29 yrs old) and always had really bad headaches. When I started seeing this new neuro that I am now seeing, he switched me over to the Keppra XR and that alone took away all my headaches. I had really had headaches and alot of bad migraines. If youre still having the headaches, have you tried the Keppra XR? My dr was trying to wean me off the Keppra last month and had to switch me back to the Keppra 500mg tablets in order to that, and while I was on that, I had the headaches again. But since the allergic reaction happened with the Lamictal, I was put back on the Keppra XR at 3000mgs. No more headaches now.

If I were in your shoes, id give the Lamictal a try. Just cause I didnt have a very good experience with it, doesnt mean it wont work for you too! But if anything comes about, that bothers you, like with me it was the swollen glands, call your dr asap. Dont let anything go. The way my primary care dr put it to me, was that if I hadnt of went into her to see her, I probably would have ended up in the ER due to how severe the swelling was and how close it was to my airway. It could have been a very bad outcome.

If you have any questions, please dont heistate to ask! :) Hope things work out well for you! :)
 
I have been on lamictal for 2 years and been seizure free the whole time. I changed from tegretol because it made me extremely fatigued. I would wake up in the morning and have a shower and that would be it for me for the rest of the day, no energy and a struggle to do everything - not ideal with a toddler! If I have side effects from the lamictal I don't notice them but I am only on a low dose. The dr recommended I take 5mg folate a day with it as well so might be worth looking at that.
 
Nakamova said:
I am. Three years seizure-free and counting...
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Well-if the auras I'm having are seizures, I'd be up for a medication that worked even if I never have the formal label of E! Does part of your E include partials?
 
momof3boys said:
well, I will tell you my experience with Lamictal. Before being put on Lamictal, i was on Keppra XR and Carbatrol ER. In March I had a VEEG and was taken off the Carbatrol. After the VEEG, I was put back on the Keppra XR. Then Vimpat was added, and that didnt go so well. I got off that due to the mood changes. I then was put on Lamictal. Within a week, I noticed alot of acne on my chin and law line. Started out as looking like normal acne, but then got worse. Started to scab over and look more like sores. Along with that, came swollen and tender glands in my neck area. I was on Lamictal for 16 days, and that day I went to my Primary care dr, where they said I was having an allergic reaction. Now my neurologist Im seeing now, said that in order for me to have an allergic reaction, I had to have a rash. My Primary care dr said that is not true at all. They tested me for any kind of infections, and drew blood to check my white and red blood cell counts. All came back negative. I was taken off the Lamictal, and within three days of not being on the Lamictal no longer, my swelling had gone down alot! The tenderness got better and within a week I was back to my normal self. I know alot of people that have had good luck with Lamictal though, I just wasnt one of the lucky ones.

As for the headaches, I was on Keppra (500mg tablets) for years. From the age of 18 yrs old through last year in November (29 yrs old) and always had really bad headaches. When I started seeing this new neuro that I am now seeing, he switched me over to the Keppra XR and that alone took away all my headaches. I had really had headaches and alot of bad migraines. If youre still having the headaches, have you tried the Keppra XR? My dr was trying to wean me off the Keppra last month and had to switch me back to the Keppra 500mg tablets in order to that, and while I was on that, I had the headaches again. But since the allergic reaction happened with the Lamictal, I was put back on the Keppra XR at 3000mgs. No more headaches now.

If I were in your shoes, id give the Lamictal a try. Just cause I didnt have a very good experience with it, doesnt mean it wont work for you too! But if anything comes about, that bothers you, like with me it was the swollen glands, call your dr asap. Dont let anything go. The way my primary care dr put it to me, was that if I hadnt of went into her to see her, I probably would have ended up in the ER due to how severe the swelling was and how close it was to my airway. It could have been a very bad outcome.

If you have any questions, please dont heistate to ask! :) Hope things work out well for you! :)
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Thanks for the tip too about the Keppra XR and headache. Again, I'm in the world of is it E or migraine and neurologist thinks most likely a really atypical migraine type of variant. Before it was looking like a temporal lobe E deal. (and still could be, but he is really not thinking so). With the way my olfactory aura persists for hours on ends, it really would mean a status situation, and several years of this and multiple times in a month, I've never dropped into more of a state, so you have to wonder if the auras are E electrical charges-it's too hard to say. The 72 hour EEG never detected them although of course TLE can be too deep. But I have to agree-this has been so long, you'd think I'd be even worse by now, and have had a generalized or something, and I haven't at all. But I definitely have SOMETHING neurological. This has been going on for four years.
Yeah-guess I'll try the Lamictal. I just can't wait to have the Topamax out of my system. My evening dose got ditched last night to start the taper and at least no eyelid twitch this morning yet, but I can still see my lower lip quiver. It BETTER go away. I'm supposed to just take the morning dose for a week and then stop. At least the lip is not that visible to others, but the eyelid one is and I don't want my co-workers to see that-it's too weird! I have to work for a living, and all of this is what makes me so nervous with side effects! I have to do my job and talk to people! We all have to live our lives too!
 
KellyD said:
I have been on lamictal for 2 years and been seizure free the whole time. I changed from tegretol because it made me extremely fatigued. I would wake up in the morning and have a shower and that would be it for me for the rest of the day, no energy and a struggle to do everything - not ideal with a toddler! If I have side effects from the lamictal I don't notice them but I am only on a low dose. The dr recommended I take 5mg folate a day with it as well so might be worth looking at that.
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Wow-thanks as well to you for your reply and glad to hear seizure free. Even if mine isn't E, on the off chance it is, may this be the med that works for me then! and glad it doesn't fatigue you, because, no, a toddler does not give you that chance! Glad as well to hear nobody has that awful life threatening rash either.
This facial twitch from Topamax really put me off and spooked me, despite Keppra and Depakote ER being two AED's I've had no issues with side effect wise.
 
Well-if the auras I'm having are seizures, I'd be up for a medication that worked even if I never have the formal label of E! Does part of your E include partials?
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My seizures tend to be tonic-clonics. Although the last time I had one, for a few weeks prior I had been having "warning" symptoms on and off that were basically partials. Not sure if that means the Lamictal would work for your partials, but I haven't had any seizure activity while on it. Side effects have been annoying, but tolerable. Some of the side effects I had initially lessened over time.
 
Thanks again Nakamova! I read the prescribing information for Lamictil, and it's indicated for partials. So, since I'm not ruled out 100% yet in the E department, I'll go with it. As you can see, I am strongly hoping it is migraine for me, and the truth is, I may never really know. As long as my symptoms are addressed and suppressed, that's all I care about. I also have to work for a living, and I don't need the label of E hanging over me anyway, especially as I don't lose consciousness. I thank heavens every day I have no other symptoms. Never been disoriented or lost awareness ever. Not once.
And for the record, since I'm still on Keppra, I decided, I'm done with the Topamax NOW. I don't care about the taper process. Since I have breakthrough auras while on it ANYWAY, I'm willing to deal with the risk of having them or unpleasant withdrawal effects, because the twitching just got to be too extreme. I'll take the risk of a few auras right now before I start on the Lamictil in a week. But I didn't want the twitching to end up being permanent. Today, so far, the eyelid based ones, (one under my eye) are fine-voila, no evening dosage last night, and none today that I was supposed to with the taper. The lower lip quiver is still there though (thankfully only I see it!) and that one has been 24/7 which is why I decided to quit the Topamax NOW with no taper. I want it out of my system altogether. But you can see why a medication that has this black box rash warning has me leery! However, sounds like it is going well for some of you, and even for some, not this "death" rash. Nakamova-what are your side effects. I can deal with some, as long as they are not one that are anything like tardive dyskinesia-like/extra-pyramidal type.
 
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My side effects are:

Blurry Vision: I had had laser surgery seven years before going on the Lamictal, and my eyesight was 20/15. Almost immediately after starting Lamictal, I began having blurry vision. I haven't had to get glasses yet, and my reading vision is fine, but I find myself squinting at a a lot of things I could see sharply before.
Dry Eyes and Mouth: It's worse in the morning when I first wake up. I keep eyedrops by my bed and in my purse.
Occasional Dizziness: Not the kind where you feel like you're going to faint, more like the sensation when you step on land after being on a boat for a while. It happens sometimes if I move my head at the same time I am scrolling on the computer.
Acne -- Mild acne around my chin area. Dilantin also had this side effect on me.
Somewhat Lower Libido: Not sure I can blame this entirely on the Lamictal as I am in my late 40s.:)
Low CBC (Low white blood cell and red blood cell count). I'm just below the low end of the range, but it hasn't seemed to bother me. I take a Bvitamin with B12 to help with this.

When I first went on the Lamictal it made me extra perky for a couple of months. I had hair loss (not bald spots or hunks of hair, but if I ran my fingers through my hair I'd end up with a lot of loose strands. I had mild headaches, very restless sleep and vivid dreams. All those side effects went away, and now I sleep fairly solidly. I don't miss the vivid creepy dreams, but I kinda miss the regular ones -- the Lamictal seems to make them harder to remember.

I also gained weight on Lamictal -- about 15 pounds. But I had lost 5 on the prior med, so that may be part of it. mMy weight is stable now (although I'd love to lose the extra ten).
 
I've been on lamictal for 8 years now. Seems to have good seizure control, at the moment. I'm having frequent auras but only tc's apart from that. I'll have one every couple of months.

My seizure patterns have changed so much since I've been on the lamictal, so I can't say how much it has helped. But things definitely could be worse so I'm sure it's working well enough.

Major side effects for me - drowsiness. I'm tired all the time. loss of memory. (lots of people here experience this one with epilepsy)

The severity of these side effects have gotten worse over time. Same as when I was on tegretol.
 
Nakamova:Thanks! No EPS/Tardive dyskinesia twitchy sounding ones! Cool.
as for reading vision, well, I'm already there on that one-not too far off your age range, so some blurry vision close up wouldn't even be noticed by me. I could do without acne, but if I get it, I'll see. I just don't want too much external anything, and bottom line, if I am having any side effects and STILL the breakthrough auras, it's a waste and I will ask for a change and I will even call in between appointments. Next one is in 5 weeks. I tolerated this severe twitching for a couple months! Unbelievable. Never again. The eyelid twitch is already gone today. It so obviously was a Topamax side effect. The lower lip quiver is almost gone this late too. Like I said, today I didn't take the taper down dosage which was supposed to be just the AM dose. It's worth it to me to abruptly withdraw. I know it's not recommended, and I would never suggest it, but the twitch even at times half gave me tremors like palpitations too, just too weird, and I already feel better totally. If I had tonic clonics, no, I would not abruptly withdraw, or for that matter, if I were SURE I did have E. But oh well, skipped it today, no aura today, and I'm also still on the Keppra.
Chris515: Thanks. Hmmm. Drowsiness. I'll look for that next week. But no deadly rash. My biggest worry. Olfactory aura is my only issue. And neurologist now thinks it's probably migraine because my auras last for hours on end but don't progress, so it's like you'd think 12-15 hours (once even 38 hours, yes, woke up with it still there and kept on kicking into almost two days of the burn smell), well, that't just TOO long, like STATUS you'd think, or like if continuous charges, but never has progressed, so we're really thinking not E, and EEG (72 hour) did not detect E. Oh, it was abnormal of course, but not E captured on it. Suggestive of it, maybe, but did not have it.
 
I've been on Lamictal for almost 3 years and have had no major dramas. I think the risk of rash is lowered by gradually increasing your dose of Lamictal to ween you on I guess. I haven't had any side affects except weight gain (although it can be argued the weight gain was caused by my trip to Europe when I ate my way from Italy to Budapest. I haven't experienced any other side affects such as acne, hair loss etc. I do get tired very easily but, I can't say for sure that's the Lamictal.
 
Great-thanks Crunchy Frog. Glad to hear no drama. and yes-I'll be starting at the low dose.
No eyelid twitch this morning yet. Lower lip area still has it, but hopefully it will subside, and I also think it is less than it was. The lower lip area one was not horribly visible, but still-I want it to go away, as I don't want ANY involuntary movements left.
I'm so glad nobody is reporting darn twitching from Lamictil. Whew!
 
Glad the eyelid twitching is going away, must be such a relief.
 
Yes! It is. Thanks! And I was getting the sensation also in my eyebrow too. My upper left eyelid was getting it a bit too, but had stopped and it was mostly right side. The below lip thing is left side though, and a very small area-a tiny quiver and I at least can't feel it now. I was starting to feel well, in a word, bizarre with these twitches and getting concerned that was now having motor partials or something, but no, it's quite obvious it was a Topamax side effect. I just am amazed how it's not considered part of the side effect profile. But if what I do have is E at all, that would have been odd to have sensory partials and then suddenly start having motor ones too, and it's for sure side effects that these twitches were. My neuro confirmed it would have been rare for me to suddenly have motor ones along with sensory ones. But again, if this is even E-- Not sure I'll ever know. But as much as I despise the burning smell aura (which also affects taste), it is preferable to the twitches when I have to work for a living. I can function with the burn smell. While I can function with the twitches, they make me look and feel bizarre, which isn't good. Two days of no Topamax. No aura yet.
 
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And better all the time. lower lip quiver which was not visible unless one really looked close and I pointed it out, well, I am pretty sure it is now also gone. The ones around the eye are all gone-haven't been back. It's been three days since I took my last dose of Topamax. As I said, (and as I noticed discussued as its own topic thread), I did decide to abruptly halt instead of the one week taper, but I don't care-it was worth it to me. I have not had an aura yet either in the meantime. No withdrawal effects at all noticed. I would never recommend anyone stop taking a medication abruptly, especially people with different types of E, but in my case, yeah, I did, and fortunately, I am fine. So for now, I have had no aura while just on Keppra which usually alone does not work for me. My last aura was one week ago. So haven't had anything but the Keppra in these last three days time and doing okay for now, but my aura acts that way. I have not gone a single month without one. The least I have gotten down to is like 3 in a month at best. That was January and I was still on Depakote ER at the time along with the Keppra! Last month I had 8 aura events with the Topamax, and with the Depakote ER, it varied and averaged about that too for the most part. In effect, nothing has worked to TOTALLY make me clear of them ever. But still back to the idea that they are really migraine auras and not E ones. But I confess, I am now contemplating not taking the Lamictal and seeing if Keppra alone works for a while. I'm not due to start the Lamictal until 6/7 anyway, so I have a few days to think about it. This last negative side effect of twitches with Topamax and three days on just Keppra alone and doing the same as I was aura wise (heck, NONE right now)makes me wonder about even bothering with the Lamictil. I have half a mind to call up my neuro and tell him I don't want to take it.
 
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I've been on Lamictal some months - not sure how many now. The first time around I got a rash and the doc took me off. Second time around a dermatologist helped treat me through the rash until it went away, and now I'm good on that part.

Lamictal has made me less of a zombie than the other drugs did. Very good thing. It has given me strange dark thoughts, mild depression, mild anxiety, and a bad case of acne in places I didn't know you could even get acne.

Lamictal has been the lessor of all the evils for me, but the dark thoughts have been very tough to deal with.
 
Thanks Endless. Dark thoughts-well, I can manage some mild worries of depression. That kind of side effect is workable to me. The rash and any physical ones are my main concern, after just dealing with the bizarre facial twitches of Topamax and now being off it, seeing how they have totally disappeared. But I do not want acne either-I don't need a new concern like that popping up either to have to be hassled and have my appearance messed up. If were having generalized, and been through every AED known but Lamictil, okay, a rash and skin stuff, sure, it would be it, but I get olfactory auras only and I just don't know that it is worth it, especially as we're now not thinking this is even E, but more some weird migraine variant.
 
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