a day without meds

[arnie]

Boy did I screw up! Every Sunday I fill up a pill box for the week, and if I am going to be out of meds I can see it and will get refills a week in advance, so I'm never without. This past week I reordered my Lamictal on Wednesday and then forgot to pick it up! Somehow I thought I had enough to last until Monday (today) so I wasn't too worried about it. When I took my night pills on Saturday I saw that the Lamictal was gone. I think I missed the Saturday night dose, everything on Sunday, and the 6AM one today. I was hoping that one day wouldn't make that much difference, but it's been forever since I have gone without meds for that long. I had 6 fairly big complex partials yesterday and in the middle of the night, and another one this morning and a couple of hours ago. Fortunately I got the Lamictal on board again about 9 this morning, so I should be good to go again. That is the first time in years I have done' something like that. I think I will put a little emergency stash somewhere in case I ever do it again. Not fun!

 

[lindsayschu2]

OMG Arnie I did the EXACT same thing on Tues--I ran out and couldn't fill the pill box for the whole week, grabbed my evening doses of supplements in the box for Tues and swallowed them all without looking, and then wasnt sure if the Lamictal was in there or not. There wasn't one in there for Wed, so there was no way of knowing whether I had taken one or not. I didn't actually have a seizure (I'm on a pretty low-ish dose and mostly rely on Topamax) but by Wed noon there was no question I hadn't taken one, I felt bizarre. everything was tingling and I was jittery and felt awful. it was too close to my next dose to catch up. I really feel for you. I will say missing Lamictal really messes with your moods for a couple of days even if you don't have seizures--I don't know if you are experiencing that part or not. I couldn't sleep and was super moody until my levels got normal. I also haven't missed a med in like 9 months. Sorry you had seizures!!

 

[N Sperlo]

I screwed it up last time. I got paranoid without Keppra. I kept thinking I was having a simple when that wasn't true. Never had one. I hope you're doing as well.

I've begun to order a month ahead of time since I get 3 months at a time.

Good luck.

 

[masterjen]

I hope you feel better soon, arnie. Goof-ups happen to the best of us, no matter how hard we try to avoid them.
Mine was a short while ago. I had a planned email check-in with my specialist, and stated what doses I was now at along with how seizures were doing (improvement but by no means controlled). I thought I had long been at the max dose; turned out there was another increase I was supposed to have implemented for AM, noon and PM. And I, um, forgot those last steps of the instructions. That was a first for me!

 

[Belinda5000]

I don't have to miss my meds to have a seizure, and it takes two missed doses of meds before I'll have a seizure.Being intractable anything can bring on a seizure with me.

My sz's would go through the roof if my neuro tried to take me off Tegretol or Topamax.

 

[Cint]

I've missed a dosage a time or two. But for me to miss a whole day's dosage + the next day's morning dose could cause me to go into status. One should never suddenly stop taking meds. It can be very dangerous.

When I first started taking Tegretol years ago, it made me very sick initially. I went status within 2 days because I couldn't hold anything down. I was in the hospital for several days.

 

[arnie]

Thanks for your replies, guys. It's nice to know I'm not alone in this. It hadn't really dawned on me until now that, unless I've forgotten some other time, it's been over 30 years since I have gone that long without my meds. I know that Lamictal has a pretty short half life, so your levels could drop pretty fast. I'm super tired right now, and I hope a good night's sleep and a restoration of med levels will help. I have made an emergency stash of 3 days worth of pills so this doesn't happen again!

Cheers!

 

[arnie]

I'm feeling really good this morning! Yay!

Onward and upward!

 

[Bernard]

My wife generally waits until she only has a day's dose left before calling in her refill. Drives me nuts when there aren't any refills left on the Rx and the pharmacy has to contact the doctor. Sometimes it gets done in a day, sometimes not. Getting the 12 pill emergency supply to carry through the interim is a PITA. Even so, sometimes the doctor's office doesn't follow up promptly.

 

[arnie]

I have a great pharmacy that I have used for years, and in a case such as this, had it not been a Sunday, when they are closed, they would have at given me a day or two's worth of pills even if the full prescription hadn't been ready. Of course it was ready, since I called it in with lots of time to spare, but I just didn't pick it up because I, mistakenly, thought I had enough to last. I've always been very much on top of organizing and getting timely refills for both me and my wife. My wife even says that if I weren't around she wouldn't have a very good idea of what she actually takes, since I fill the med boxes.

 

[masterjen]

I'm feeling really good this morning! Yay!

Onward and upward!

I'm glad you're feeling better!

 

[Nakamova]

I know that Lamictal has a pretty short half life, so your levels could drop pretty fast.

Actually, Lamictal has a relatively long half-life (29 hours), at least compared to some other meds, such as Keppra (6 to 8 hours) or Vimpat (13 hours).

Anyway, I'm glad you're feeling better.

 

[arnie]

I talked to my epileptologist yesterday, told her about the seizures over the weekend, and asked her about clearance times for lamictal. I couldn't bring myself to admit that I'd gone a day without meds. She told me that the half life of lamictal is about 12 hours, the Wikipedia entry says it's 13.5 hours, Drugs.com says 32.5 hours, and the GSK site (and Nak!) says 29 hours, so I guess it's somewhere between 12 and 32.5 hours. Big help, huh? In any case, since I had started having the edgy feelings that often precede a bout of seizures several days before my missed doses, I'm thinking that the seizures may have had nothing much to do with my screw-up. I've certainly had worse seizure clusters when I've been on the meds regularly.
Oh well, water under the bridge and all.
I'd better get off the computer and get to work. Those bikes aren't gonna fix themselves!

I hope you all have a great day!

 

[bighealey]

I missed one time and had a seizure. My neurologist then triples my dose, said I was on too low a dose.

 

[Nakamova]

the half life of lamictal is about 12 hours, the Wikipedia entry says it's 13.5 hours

Wikipedia says it's both 13.5 hours (in the text) and 29 hours in the thumbnail box of info on the right side of the page. So I did a little more digging at the crazymeds site, and they confirmed that the whole thing is a bit of a crapshoot:

Lamotrigine has a plasma half-life of....Get out a dartboard or some percentile dice, because a random number is going to be just as good as anything. The folks at GSK really tried to pin down a number for immediate-release Lamictal (lamotrigine). It’s too bad they didn’t do much work for the extended-release version. Fortunately someone did, and they did a real pharmacokinetic study, with a lot of people with epilepsy. The results: once you reach a steady state (in two to four weeks), the half-life for the extended-release version is pretty much the same as the immediate-release version.
Either way, it so depends on what other medications you’re taking, if you take it once a day or twice a day, how much you’re taking, how old you are, your gender, and, for some women, where she is in her monthly cycle.

Taking Lamictal (lamotrigine) once a day with no other medications produced a range of half-lives from 14 to 103 hours with an average of 32.8 hours. Taking it twice a day produced a range 12 to 62 hours with an average of 25.4 hours. The aggregate half-life given for Lamictal is 26 hours.

If you’re taking a valproate medication (Depakene/Stavzor (valproic acid), Depakote (divalproex sodium), Depacon (valproate sodium))/whatever they call sodium valproate where you live) the half-life shoots up to 70 hours.

If you’re taking an enzyme-inducing AED like Dilantin (phenytoin), Tegretol (carbamazepine USP), or good old phenobarbital the half-life is cut to about 13 hours. Estrogen-based birth control pills do the same thing. Trileptal (oxcarbazepine) doesn’t have much of an effect. There are conflicting data regarding high dosages (400mg a day or higher) of Topamax.

 

[arnie]

Thanks for the more complete info, Nak! Isn't that just about the craziest thing ever? What if insulin were like that? Or a steroid inhaler for people with asthma? How would you ever know what you were supposed to be taking? Of course, presumably once you were consistantly taking your meds and had already reached a steady state, maybe the half-life wouldn't matter so much, but still . . .
Also, there is the issue of generics vs. brand name, not to mention all the other possible interactions that you mentioned, plus, I'm sure, a number of factors that are not even known!
And speaking of dosages, I think I mentioned in my VNS thread that my new doc, the epileptologist, ordered a Lamictal level for me. That's the first time in probably almost 20 years of taking it that anyone has wanted to check a level. I hadn't pushed for that to happen, because most of the literature I have read says that Lamictal dosing is based more on results than on blood levels. Apparently that ain't necessarily so. The therapeutic level is between 3.0 and 14 point something. My level was 4.9, which is certainly at the low end of the spectrum. If I had known that years ago I probably would have tried harder to dose the Lamictal in such a way as to get better control, but I foolishly thought that my neurologist knew what he was talking about when he told me how much I should take and when, etc.
Live and learn. Even now, with the epileptologist, I feel that I have to look out for myself. She had wanted to start me on Vimpat without even having checked a Lamictal level. She only checked the level when I told her I would not start on another med, and when I told her I was continuing to have seizures. I also increased my lamictal myself and spread out the dosing, then told her about it. She agreed that I had done the right thing. Now that I know how low my levels are I will tell her that I want to increase it again if things don't stabilize in the next month or so.
Oh well. I had better go now and take my pills and take a walk with my dog.

Onward!

 

[kirsten]

My pharmacy lady, Angela, takes care of me. She calls me a week before my script is due and goes through everything on it to check that everything's the same. Then she calls the pharmacy and has them put it together and I collect without standing in the queue. I don't know what I would do without her. She knows more about what's going on with my meds than I do, and since I get confused with it a lot of the time, it's nice to have no mistakes with what I collect. She's been helping me for over two years.

 

[Nakamova]

In one study, the Lamotrigine therapeutic threshold ranged from 4.0 to 42.0 (!). FWIW, the last time I had my Lamotrigine levels checked they were at 5.1, and I'm on a relatively low dose (175mg/day).

 

[arnie]

In one study, the Lamotrigine therapeutic threshold ranged from 4.0 to 42.0 (!). FWIW, the last time I had my Lamotrigine levels checked they were at 5.1, and I'm on a relatively low dose (175mg/day).

Imagine if you were baking a cake and the recipe called for between 4 and 42 teaspoons of baking powder, and a baking time of somewhere between 15 minutes and 3 hours! To make it even worse, you wouldn't know in advance how the cake would turn out on any given day. What the heck?!?! It's yet another example of how much trial and error and uncertainty there still is with the "treatment" of epilepsy.

Oh well. We grin and bear it, I guess!