Lamictal: what dosage have you been on?

[lindsayschu2]

For anyone who has been on Lamictal, I'm curious what dosage you have been on, for both monotherapy and adjunctive? Yes yes everyone is different etc and whatnot. I'm curious to know what ranges are for intractable epilepsy. Thanks!

 

[arnie]

I'm on 200 twice a day now. (400 total). I've been at 500 before but that much makes me really tired, drowsy, wasted, zombie-like. 500 didn't give me any better seizure control than 400, anyhow. 400 keeps away the tonic-clonics but not the complex partials. I'm hoping the VNS I've had for a few months will eventually cut down on the seizures and maybe allow me to reduce the meds a little. Fingers crossed!

 

[lindsayschu2]

Did you get through your seizure-y feelings OK the other night Arnie? Did the pizza help??

 

[BlueCat]

I'm on 375 x 2 (750/day) plus 2000 Keppra. From what I've read over the years on this forum it sounded like a lot but when I questioned my doc he said it's all about the serum levels not the dose. I questioned because I've only had 4 T/c's, 1 of which was alcohol related and did not result in a diagnosis, just a slap on the wrist, the second resulted in a diagnosis, two were as a result of being changed to generic (each time upping the dosage plus adding Keppra to the second Lamictal increase. So far no changes after the one last week. Still waiting on EEG results. Going to change docs after he returns from vacation this next week. None of these have caused me any problems. The only bad one for me was dilantin. Made me feel like I was 2 feet behind myself looking though someone else's eyes.

 

[qtowngirl]

been on 150 2x since prescribed, took months to get to that amount tho as the rash and swollen eyes on day one really slowed down titration. at the time was on carbamazepine and topamax, so day of prescription:
-upped the carb from 800/day to 1000
-started slowly ramping down off the topamax (yay!)
-started lamot

w/topamax being my second drug and going off/replaced with lamot, it was then i was slated as intractable (kind of a two-fold b/c earlier that year they found the lesion so technically was intractable anyway, even if i tried another 20 meds ).

 

[Alicia w]

I'm on 100mg with 1,800mg gabapentin, and 40mg celexa. Possibly going up on some.

 

[notime]

Right now I am on 100mg twice daily, and keppra is 1000mg per day which was at 3000mg but my neurologist has been slowly reducing it. After I am off he may increase it to like 150mg for the lamictal. I suppose it's because I have side effects with keppra being tired and bad memory and that is why he is waiting to increase it once I'm off.

 

[Autumn Breeze]

200 daily

 

[masterjen]

It was the first medication I tried. I was on 250 mg per day when I was on it, the dose I was told to titrate to. At that dose I was getting severe side effects (dizziness, blurred and at times double vision and clumsiness) and it aggravated myoclonics. I was too much of a newbie at the time to think to ask if I could try a lower dose rather than just stop (slowly) the medication, but that is what I was told to do and I did.

 

[lindsayschu2]

I'm now at 250 and supposed to go up to 300 in a week and not sure I'm that happy about it. I'm back to not sleeping and my legs are swelling. I'm thinking of asking to go down to 200again. Thanks for all your responses.

 

[masterjen]

I'm now at 250 and supposed to go up to 300 in a week and not sure I'm that happy about it. I'm back to not sleeping and my legs are swelling. I'm thinking of asking to go down to 200again. Thanks for all your responses.

I've had some fluid retention (showing up in my ankles especially) on some medications as well. Really make sure you are well-hydrated, and as annoying as it is to get up to the bathroom in the night, make sure to have a glass of water before bed. Minimize salt usage. Make sure to get lots of exercise, esp. cardio, and don't sit for too long without getting up and walking or at least moving around. I also found a short (at least 15 minutes) walk after my evening meal, the meal I'm most likely to just sit and veg. after, really helped.
All the exercise might help with the sleep issues, too

 

[lindsayschu2]

Thanks MasterJen!

 

[TimeW]

I'm officially on 400, though in reality would be 500-600 (currently breastfeeding and a bit sleep deprived). I was on 800-1000 when pregnant. I tried lamictal with keppra a few years ago and turned into a very very angry woman...I lasted one month then went back to my lovely lamictal-only self

 

[Penny]

While I as in the hospital this last week my meds were all out of wack. I had been on 300mgs 2xs daily but as of last night I am now down to 225mgs in the evenings. My blood levels had been to high. My trileptal levels were to high too. They were taken down fro 1500mgs daily to 1200mgs daily.

 

[lindsayschu2]

Wow Penny do they think the too high levels were why you were having such problems?

 

[CathyAnn31]

I'm on 200 a day.

 

[ShaunaM]

I am on increasing doses - it will be 150mg 2x daily. I am currently at 112.5mg morning and 125mg night. I am also weaning off Tegretol at the same time - currently at 100mg 2x daily from a start of 200mg 3x daily. The past week I have had some adverse side effects including tremors, headaches, heart palpitations, and myoclonic seizures. My neurologist will not call me back. I'm feeling very frustrated right now!

 

[lindsayschu2]

I hate when neuros are unresponsive, especially when we really need a response!! Do you think that maybe your issues are more related to withdrawals from tegretol? I was going up on Lamictal and down on Topamax, and thought my problems like yours were the Lamictal, but doc on call thought it wasn't the lamictal at all but rather Topamax withdrawals. Hope your neuro calls back!! I said earlier I was thinking of going back down on lamictal but have since decided not to--too many problems recently, so I'm sticking with the program to go up to 300 later this week.

 

[ShaunaM]

Do you think that maybe your issues are more related to withdrawals from tegretol?

I have thought that, especially since I seemed to have a lot of issues when I initially decreased the Tegretol - dizziness, confusion, forgetfulness - seemed like typical withdrawal symptoms. These symptoms feel different, but it's definitely a possibility. I guess I won't know for sure until I make the full transition!