Lamictal opinions/ALL. Good & Bad Sought

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Wow. I read through that and I have a good idea what you are saying about the dark thoughts. I get the general idea. Well, I definitely asked for all experiences and I am glad you shared. There is no way I want my mood messed up like that. As we all respond differently to medications, certainly I can't just go and fret endlessly that maybe I would end up with dark thoughts on Lamictil. My starting dose is to be 25 mg twice a day. So I would sure hope it doesn't give rise to any change in mood that has the potential for risk involved. There is no way I can afford to be dealing with that. I work full time and need to stay employed! I have enough to concentrate on at work! Well, when Tuesday hits, that Lamictil script may remain unfilled. Or I may call and ask for an alternative or just ask for the recent reduction of Keppra from two months ago (500 mg less a day) maybe to be increased back to 500 and try Keppra by itself again. Keppra does not bother me at all.
 
k2s4ever said:
Wow. I read through that and I have a good idea what you are saying about the dark thoughts. I get the general idea. Well, I definitely asked for all experiences and I am glad you shared. There is no way I want my mood messed up like that. As we all respond differently to medications, certainly I can't just go and fret endlessly that maybe I would end up with dark thoughts on Lamictil. My starting dose is to be 25 mg twice a day. So I would sure hope it doesn't give rise to any change in mood that has the potential for risk involved. There is no way I can afford to be dealing with that. I work full time and need to stay employed! I have enough to concentrate on at work! Well, when Tuesday hits, that Lamictil script may remain unfilled. Or I may call and ask for an alternative or just ask for the recent reduction of Keppra from two months ago (500 mg less a day) maybe to be increased back to 500 and try Keppra by itself again. Keppra does not bother me at all.
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My dr also started me out on 25mgs twice a day, and I was suppose to get up to 100mgs twice a day. I made it to 50mgs twice a day, and thats when I found out I was having an allergic reaction to the medication. I know the medication doesnt affect everyone the same, but for me I noticed a difference in my moods within a few days. By the end of the first week, I was just starting to get angry more, then came the crying spells, and at the end, it was like one day was ok, the next day was just horriable. But I'll tell ya what.... when I got off that medication, within 3 days I felt like a new person. I just cant believe what a difference getting off a medication can feel like!

Now my PA increased my Keppra dose back to the 3000mgs I was on before the VEEG and Ive noticed a good amount of improvement with things. For now, Im going to take the 3000mgs of Keppra XR each day, at least til I go back for my next appointment at the end of August.
 
momof3boys said:
My dr also started me out on 25mgs twice a day, and I was suppose to get up to 100mgs twice a day. I made it to 50mgs twice a day, and thats when I found out I was having an allergic reaction to the medication. I know the medication doesnt affect everyone the same, but for me I noticed a difference in my moods within a few days. By the end of the first week, I was just starting to get angry more, then came the crying spells, and at the end, it was like one day was ok, the next day was just horriable. But I'll tell ya what.... when I got off that medication, within 3 days I felt like a new person. I just cant believe what a difference getting off a medication can feel like!

Now my PA increased my Keppra dose back to the 3000mgs I was on before the VEEG and Ive noticed a good amount of improvement with things. For now, Im going to take the 3000mgs of Keppra XR each day, at least til I go back for my next appointment at the end of August.
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INDEED-feeling like a new person describes it well! It's been 4 days, well, almost 4 1/2 now days since I took that last Topamax, and going off of half life data, it's definitely out of my system by now. Amazing as all the twitching side effects are gone, including that last tiny stubborn lower lip quiver. That took about two days, but by yesterday, gone for sure. It so obviously was a Topamax side effect. What's interesting is that I only get an olfactory aura (which is the possible simple partial, but probably at this point, neuro thinks is some sort of migraine). I last got the aura 9 days ago while still on Topamax. Now, four days since Topamax, interesting that I haven't had an aura. I feel great, but do have a very slight headache, though it is not disabling or interfering with me going about my day. So it really again makes me wonder about migraine. When I was on Keppra alone, one month I had 29 auras! This is why my neuro added Depakote ER when I mentioned vague headache (and occasional visual stuff that look like tiny bright white sparklers-very tiny, like floater things-have had these intermittent all my life-always attributed to an anomaly, but I wonder if it is tied into migraine now). But still had breakthrough Auras which was why the switch to Topamax. He is choosing the add ons that are dual use E and migraine. Eventual plan was back to monotherapy. The hope was for the Keppra alone to work which it didn't. But four days now of just Keppra, and no aura, so go figure. Therefore, I am now debating whether to start the Lamictil. I do NOT need my moods messed with. I think I am going to call him and tell him I'm not doing it-reassess for another medication or I'll see if the Keppra keeps holding me, or maybe he can bump my Keppra up again. (although this isn't a migraine use medication) But funny how I haven't yet had an aura while Keppra is my only AED type medication when before, being on it didn't do a thing. Maybe it still isn't and I'm just having RANDOM luck by being aura free-that would be typical for me! I may ask him about migraine medications only, but I know the ones with cardiac side effect potential like Imitrex I can't take-I have arrhythmia issues. Plus-my main issue actually does not involve a severe headache-it's the olfactory aura. Headache does not always accompany it, but I have on occasion, had a headache so bad where I had nausea and vomiting.
 
k2s4ever said:
INDEED-feeling like a new person describes it well! It's been 4 days, well, almost 4 1/2 now days since I took that last Topamax, and going off of half life data, it's definitely out of my system by now. Amazing as all the twitching side effects are gone, including that last tiny stubborn lower lip quiver. That took about two days, but by yesterday, gone for sure. It so obviously was a Topamax side effect. What's interesting is that I only get an olfactory aura (which is the possible simple partial, but probably at this point, neuro thinks is some sort of migraine). I last got the aura 9 days ago while still on Topamax. Now, four days since Topamax, interesting that I haven't had an aura. I feel great, but do have a very slight headache, though it is not disabling or interfering with me going about my day. So it really again makes me wonder about migraine. When I was on Keppra alone, one month I had 29 auras! This is why my neuro added Depakote ER when I mentioned vague headache (and occasional visual stuff that look like tiny bright white sparklers-very tiny, like floater things-have had these intermittent all my life-always attributed to an anomaly, but I wonder if it is tied into migraine now). But still had breakthrough Auras which was why the switch to Topamax. He is choosing the add ons that are dual use E and migraine. Eventual plan was back to monotherapy. The hope was for the Keppra alone to work which it didn't. But four days now of just Keppra, and no aura, so go figure. Therefore, I am now debating whether to start the Lamictil. I do NOT need my moods messed with. I think I am going to call him and tell him I'm not doing it-reassess for another medication or I'll see if the Keppra keeps holding me, or maybe he can bump my Keppra up again. (although this isn't a migraine use medication) But funny how I haven't yet had an aura while Keppra is my only AED type medication when before, being on it didn't do a thing. Maybe it still isn't and I'm just having RANDOM luck by being aura free-that would be typical for me! I may ask him about migraine medications only, but I know the ones with cardiac side effect potential like Imitrex I can't take-I have arrhythmia issues. Plus-my main issue actually does not involve a severe headache-it's the olfactory aura. Headache does not always accompany it, but I have on occasion, had a headache so bad where I had nausea and vomiting.
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After I was released from my VEEG in March, my dr sent me home only on Keppra. 3000mgs of the XR. I went only on the Keppra XR for less than two weeks, still experiencing some partial simple seizures. But my level wasnt where it should have been since he took me completely off all medications for the 3 1/2 days I was in the hospital. Now after I tried the Vimpat and Lamictal, my dr got frustrated and said to just stay put on the 2500mg of Keppra (at the time he was trying to wean me off), he thought it was a high enough dose to hold me, but said if anything more serious occurs to go to the ER. The only side effects I had before I was increased back to 3000mgs of Keppra XR was the numbness and tingling sensations in my feet and hands. So I think the 2500mgs was holding the overall seizures, but letting the auras slip through. But just days after being put back on the Keppra XR at 3000mgs, I saw a huge improvment and it went all away within a week.

You could try the Keppra alone and see how it works for you. I did that before they put me on the Lamictal. I went for 5 days with good results only being on the Keppra, but then on the following morning, i started to get the funny feelings I get before a seizure happens. Looking back now, my level probably wasnt where it should have been, which explains the seizure acitivity wanting to come on.

Ive been on the Keppra XR 3000mgs since May 25th and Im doing good so far! (knock on wood).... :noevil:

How many mgs of Keppra are you on now?
 
I have been on lamotrigine (generic for lamictal) for 4 years and have been seizure free for 3 years. I never experienced any bad side effects. Hope it works well for you. Definitely consult with your doctor if you experience any of the above mentioned dark thoughts!
 
momof3boys: thanks. I'm on 1500 daily, generic. I could always ask my neuro about the XR, which would force it to brand name since it's only available in brand in the XR. It's weird because it didn't help me before much, but I am sitting here with my last aura on 5/27. Even if it's migraine and not E, Keppra is the only AED/neurological related medication I am on at the current moment, five days now, and no aura. But my aura is so random; an actual burn smell in the environment can trigger it, but sometimes that doesn't. Many times there is no trigger-it's abrupt and sudden. I could be at work, home, in the shower, once even at my neuro's office. You would have no idea I had the aura-it's just a burn smell I detect and then I know I'm going to smell it all day long. But the duration of the aura is what calls E into question-it's just too darn long, hours on end. Whereas migraines (well, at least the headaches) can go for a few days-my aura in my opinion could just be when I am having a migraine without headache, which not everyone realizes is another variant. But sitting here fine on just Keppra for the moment makes me not want to start the Lamictil. I may see how long I go aura free. Like not start the Lamictil until my next aura. I think I may do just that. Like if it currently isn't broken, don't mess with it.

EDIT: well, the aura just kicked in this evening. Direct link to food being sauteed in the skillet. So today-smell was the trigger, lending more credence to migraine. Well, NOW I may go ahead and try the Lamictil. I read the description on epilepsy.com too and it was not an alarmist description, so I think I'll go ahead after all. I'll wait until Tuesday, but I could probably just go get it tomorrow and start it. I just hope it helps.
 
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Ames4714 said:
I have been on lamotrigine (generic for lamictal) for 4 years and have been seizure free for 3 years. I never experienced any bad side effects. Hope it works well for you. Definitely consult with your doctor if you experience any of the above mentioned dark thoughts!
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Thanks! I would be on the generic too. I'm glad to hear of someone with no side effects. Keppra and Depakote ER-both were (Keppra is) fine. This Topamax (it was generic too) really threw me for a loop because I have never had such a blatant side effect. But the twitching really encompassed my face-jumping jacks below my one eyelid; quivering by my lip and chin. Other eye-upper eyelid. The one eye: twitch inside the eyelid like a worm was squirming in there. My eyebrow sometimes even. I also felt sometimes a weird sense of general tremors in my upper body-didn't bother to mention that before because it is vague and difficult to explain and I do have an arrhythmia history, so I always have to factor that in-but heck, it stopped, so bet you it was also a side effect. This is why I am so leery as I see the rash warning/black box warning on Lamictal/lamotrigine, because this was a terrible side effect I had and as I'm (for the moment continuing to be) aura free, it really makes me hesitate to start a new one. Especially as we're more on the track that this isn't even E.
 
Loved the Lamictal

I was on Lamictal for 5 years with it doing a great job controlling my TCs and no side effects. Sadly that ended last week with 2 TCs in one day. But before that, it was just great, and I hope we can find a way for me to keep taking it. Good luck!
 
Thanks. It's encouraging to hear it helped and didn't have side effects, but sorry to hear you had two TCs last week.
I only get an olfactory aura, (but do have random visual sparkler things at times that are very brief-I keep forgetting how very relevant that could be)but I got the olfactory aura last evening after my last one was 5/27. No way to really know for sure if it's SPS version of E or this migraine variant that neuro (& now me) think it is. But tried two meds that are dual use for E and migraine and I still wasn't aura free on either, and the Topamax was stopped as I explained due to the wicked facial twitches. So now I wonder, will Lamictil address migraine?
 
as always, thanks.
and for the record, I talked online on an ask neurology type deal just to get an informal, quick glance opinion-very interesting, as the neurologist was quick to say that his impression on my reporting of stuff is gustatory seizures, well gustatory partials. I have always focused on the olfactory part as primary, but the bad taste has always accompanied it. Reading on gustatory seizures online, yuck, hate to admit, sure sounds like me as it says it affects smell often and the aura effect (bad taste) can persist for hours following the actual seizure itself. Aww darn, but sounds awfully familiar. So at this point, I am willing to start the Lamictil. I don't need (or want) the formal E diagnosis, but if I can find the right AED that suppresses the aura, that's all that matters. I know I have to get this suppressed. In fact, if I can remain not labeled as E, fine with me as I never want my work life interfered with. I have no issues at work at all, but I am always scared if I had a label, I'd get hassled, etc.
 
Started Lamictil today

Well, day one of Lamictal. I'm on 25 MG twice a day as the starter dose, remaining on the 1500 mg of Keppra.
Took my evening dose at 8 pm my time, and wouldn't you know-just now at 9:50 PM, I got the olfactory/gustatory aura! I am now including gustatory when I talk about my aura as I have always overlooked the prominence of that as the equal aura and have to wonder if they're gustatory that then also affect smell with it! Like is gustatory aura the primary aura really?
And the aura triggering-all I did was laugh at something. That's it! This is how it works for me. Either an environmental actual smell of food that is fried, or like the smoke from the residue when something is baked in the oven. But so often-no real trigger. But laughing has brought it on at times. Ridiculous. That kind of abrupt onset is again the reason that I keep remembering to face up to the fact that I just bet I really do have E. May the Lamictil please do the trick and be the one that stops these auras! (and no nasty rash or other side effects either please!!)
 
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