Question about Lamictal

[MAB]

I have been on generic Lamictial since sometime in Oct. for partial seizures. Before I was DX'ed in Oct. I was having 100's or more partials over the last 3 1/2 years.

I am only on 150 mg of lamictial. 100mg in the morning and 50mg in the afternoon. From what I have read, 150mg is a very low dose. To me, it seems like it is controlling the seizures very well. I had one possible partial on Nov. 7. The symptoms were so mild that I am not absolutely sure it was a seizure. I have been through a couple sinsus infections since Oct. and had no seizures which is one of the things that always set them off. With a sinus infection I would have one after the other for hours or longer.

Is it possible to get complete control with such a low dose? I don't see my neurologist until March and I think she will want to increase the dose but I actually like the way I feel now. I feel like my moods are more stable, I have energy, I sleep better with the switch to a different sleeping pill, 2mg. klonipin. Overall, I feel very well. What do you think, can 150mg control partials that were completely out of control before I started?

 

[arnie]

The bottom line is: if your seizures are under control they are under control, regardless of how much medicine you're taking, so there is no reason I can see that you should need to increase your dosage. It's always good to have the lowest effective dose of any medicine because that minimizes the side-effects. Anti-epileptic drugs, especially can cause side-effects years after you have begun to take them. So, if you are feeling good and have good seizure control, my thought is that even if for some reason your doc wants to increase your meds, just tell her no.

 

[MAB]

Thanks Arnie. I don't like to take more of anything than necessary. I figure if things start to get out of control, hopefully just increasing the Lamictial will work.

 

[MAB]

Of course, I have changed a couple other things since finding out I was having seizures. I don't skip meals anymore, I get plenty of sleep and I am finally keeping my thyroid under control. So maybe it's a combination of several different things but I am happy!!!!

 

[chmmr]

Congrats on getting such great control on the Lamictal MAB. I agree with Arnie, if it's working for you, there is no reason to increase your dose.

It seems to have been pretty good over here too for my daughter. We haven't seen too many of the obvious complex partials we had before (only 1 since starting it), and a couple of smaller things that were definitely set off by illness. I uppped her dose to 125 a couple of weeks ago and haven't seen anything since then so fingers crossed this is where we will stop too.

 

[MAB]

I was supposed to see my neuro in Jan. but she had to cancel the appointment. She wanted me up to 175mg by then. We rescheduled for Feb. but I had to cancel. I am now scheduled to see her in March and who knows how much she thinks I should be on but I plan to stay at this dose unless the seizures come back.

 

[chmmr]

I was supposed to see my neuro in Jan. but she had to cancel the appointment. She wanted me up to 175mg by then. We rescheduled for Feb. but I had to cancel. I am now scheduled to see her in March and who knows how much she thinks I should be on but I plan to stay at this dose unless the seizures come back.

I'm betting that she will be fine with what you have done since you are being so well controlled. I know our team has given me guidelines for what dosage i should work my daughter up to as well, but always with the understanding that if i stop seeing issues, then i can stop increasing the doses. I'm sure your neuro thought there was no way you would be controlled on a low dose so she was just giving you a minimum guideline of where she figured you would need to be.

 

[kirsten]

Just a warning: if the meds are working at that dosage, think carefully before you go onto the so-called 'therapeutic dose.' I can't tell you how many times I've been happy on a med until my doc put it up to the 'therapeutic dose', at which point I started getting horrible side effects that wouldn't go away even when we went back down to the dose I was happy on before.

 

[MAB]

Thanks Kirsten. That's my plan. If she doesn't like it there are other great neurologists in my area. I live within 20 minutes of a level IV Neuroscience Institute epilepsy center. I also had a 16 hour neurosurgery on my back at the same center so I know how blessed I am to be near them if I need them again.

 

[kirsten]

MAB, it's not unheard of to stick to a lower than therapeutic dose. I've read in a few package inserts that you should slowly increase the dose and stop increasing when you have seizure control. Lots of inserts are pretty vague about the 'correct therapeutic dose.' I always put those words in quotes because the words really, really annoy me.

 

[giveasmile]

I agree with everyone else. For one drug you might need an eighth of the recommended dose and another you might need 4x the dose. It's all specific to your body.

I know doctors want to make sure we have everything we need but if it's working at a low dose I wouldn't mess with it.

 

[Nakamova]

MAB --

I had the same "disagreement" with my neuro. She wanted me on at least 300mg Lamictal per day. My past history on meds had been that lower-than-average doses did the trick, so I stopped when I hit 250mg/day. I explained why to my neuro, and also told her that I was comfortable with the risk of seizure if I really was undermedicated. She was angry at me, wouldn't acknowledge that my point of view might have merit, and wouldn't even wish me luck with trying the lower dose. I stayed at 250mg -- and then tapered slowly down to 175mg -- and I've been seizure-free at 175mg/day dose for over 5 years.

Incidentally, the World Health Organization (WHO) recommends a Lamictal maintenance dose for epilepsy in the range of 100 to 200mg/day. Whereas in the U.S. the recommended maintenance range is 300 to 500mg/day! The cynic in me says that Big Pharma in the U.S. may have something to with the discrepancy...

 

[MAB]

Thanks Nakamova. I know seizures aren't anything to mess with but I've had lots, 100's-1000, or more of them for over 3 years with no treatment and now with only 150mg I have had maybe one. I willing to risk another partial to see if this dose will work. I have never been this long without a partial and I have even been sick a couple times and no seizures.

My neuro is very nice and I would hate to have to switch but I will if necessary. I doubt my primary care doctor would give me a prescription if I go against the neurologist's recommendations since they are all tied together through Mercy Health Care. But there are lots of excellent doctors in this area.

 

[Nakamova]

It's okay to stick with your current neuro, just as long as you don't get too stressed out by having to assert or explain your point of view. My neuro was nice too, but she wasn't always good at accepting that she might be wrong sometimes...

Good luck at the lower dose, I really hope it does the trick for you!

 

[Evamarie91]

My doctor won't declare his patients under control until am eeg comes back with no epileptic activity. That may be something to consider when it comes to considering whether or not to up your dose of medication.

 

[MAB]

I've never had an EEG show anything.

 

[lindsayschu2]

Hi guys--Today I had my second opinion, and I'm starting Lamictal as well. I am hopeful--MAB, you and I have shared stories on here, and we seemed to have been plagued with the same type of cluster SPs. I so hope I have the success that you and Nakamova have had with this med. I hope you are still doing well, and I will keep what you both have discussed in mind about dosage. Glad you have both done well on this med. (By the way my discharge sheet had the word 'intractable' on it for the first time. Joy.)

 

[urza3277]

I agree with most of you on here. When I first started taking lamictal I wasn't even having any seizures. I just took it to get my license back. So I was at 25 MG / per day and I was feeling fine and even at 50 MG / per day I was fine. But that wasn't in the theraputic range so my neuro ramped it to 200 mg / per day and Then my seizures went through the fan and then it was just take more doses never once has any neuro I ever have in my life acknowledge that the Pills themselves and the high dosages were the very things making my seizures worse. I went through the same BS with Topamax too.
I think it has alot to do with how american Dr's practice medicine. More always seems to equal better for them. And they also tend to not focus on what could be causing something but rather just, "here take this pill" mentality. I'm currently supposed to be taking 750MG of keppra twice per day but I lowered it months ago to 500mg Twice per day cause I felt like I was taking too much. I agree with Naka that the lower doses seem to work better for me as well.
Cheers!

 

[MAB]

Lindsayschu2, I wish you the best of luck with the Lamictial. I was reluctant after the reactoin to Keppra but I'm glad I gave it a chance. I haven't had any of the problems I worried about and even the blurry vision has cleared up, at least for now. I am on my 3rd sinus infection since starting the lamictial and I haven't had any seizures.. Sinus infections were always a big seizure trigger for me. I am trying to find a good ENT that might be able to help me with all these sinus issues though.

Lindsay, I'm sorry they said your seizures are intractable. Doctors aren't always right. I really do hope that lamictial is the answer for you.

 

[lindsayschu2]

MAB from what I've been reading, some of the common bad side effects of Lamictal are hair loss and insomnia, and I don't need any help with insomnia AT ALL. Apologies for hijacking your thread but have you had insomnia or hair loss with this drug? And I don't know why she wrote 'intractable' because I put that question to her directly and she said she had no way of knowing if we will resolve my seizures and that we had many drug options left to try (and that I wasn't on a very high dose of what I was currently on :-()