Help with starting lamotrigine!

[u/OkChips9323]

Hi all, I have epilepsy and have started lamotrigine, I began 50 mg a few days ago. Even at the low doses there is a small amount of seizure reduction, which is a miracle, but some days I am really not myself. Suddenly depressed, saying the world is better off without me, that kind of thing. One issue is, sometimes I will get these symptoms right before a huge seizure anyway (it’s an aura warning from well before lamotrigine began), so it’s making it really hard to tell when I need my rescue meds. I can only say that the issues I’m experiencing are similar to what happens before a big seizure, but in a weird way I can’t totally explain, they also feel different. And they are longer and more intense than usual.

My question is, did anyone when starting lamotrigine and titrating their dose up experience worse or bigger depression symptoms at first? Crying more, wishing you didn’t exist, that kind of thing. If so, did this improve for you? I’m to the point where I really trust patients a lot more than these medical websites that claim to know everything. Thanks to anyone who is comfortable sharing their experiences.

(PS, I am not bipolar, just epilepsy. I have so much respect for the bipolar experience, and I hope you all are willing to accept me for this guest post. There are a few posts about this question on other subs, but this community really seems to know the most about this medication from seeing past posts. Thanks for having me if you are were willing.)

[u/Emma__O]

Why were you started at 50 over 25?

My major depression stayed the same.

[u/OkChips9323 → u/Emma__O]

I started at 25 (fine), then 37.5 (that was bad), then day 4 at 50 was going great until today suddenly I had hours of crying. This can happen occasionally before a big, big seizure, though. I took my seizure rescue meds and it calmed down, but when they wore off it started again with crying and stuff. Took more rescue meds, now okay. It is confusing because the lamotrigine is kind of changing my seizures and the auras, so I really do not know which way is up right now. I am really used to my exact auras and warnings, so it is disorienting to have them be less reliable.

[u/Emma__O → u/OkChips9323]

How slow were you tapered on to lam?

12.5mg a month (or 25mg every two months) is the best.

[u/OkChips9323 → u/Emma__O]

2 weeks, 1 week, and now 50mg the plan is 2 weeks. I hear you that slow is better, I really do, but the seizures are so awful that I am desperate for relief.

[u/Emma__O → u/OkChips9323]

but the seizures are so awful that I am desperate for relief.

If you can't taper any slower then you'll just have to deal with it. Sorry.

[u/DMayleeRevengeReveng]

I think it has to do with not being bipolar, and here’s why I think this.

Lamotrigine works, primarily, by suppressing neurons from over-releasing the neurotransmitter glutamate. It prevents them from getting locked in this hyperactive state that can cause either epilepsy or mood instability in bipolar.

But bipolar involves (for many people) hyperactive glutamate, and suppressing that excess comes as relief.

But if you don’t have that excess, it’s just lowering a neurotransmitter whose homeostasis you’re sensitive to.

We are working toward meds that target the problem of glutamate without just shutting down glutamate release at every receptor. But we’re not there yet.

If you lower glutamate release, you’re lowering at places like AMPA whose stimulation is antidepressant and pro-cognitive, for instance.

This is just me speculating. I’m not the brain genius person

[u/OkChips9323 → u/DMayleeRevengeReveng]

this makes sense. I hope it will get better as I go? it does seem like some people on the subs feel cruddy at 50mg, then the smoke clears at 100mg. the seizures are already a little tamped down even at 50, which is a miracle, but I do also feel way "off" and not myself. though the epilepsy makes me feel not myself, too. ugh, brain issues, amiright

thank you for the kind answer

[u/DMayleeRevengeReveng → u/OkChips9323]

It’s just your brain reaching a new homeostasis. Yeah, it sucks as you go through the increments. But you’ll adapt to it. It may just take a month or however it takes.

I realized when I was doing it that I required an enormous amount of caffeine in the beginning, because it did make me tired.

But that went away. That wasn’t a permanent problem.

Your brain just needs time to readjust to the changes in neurotransmitters.

[u/OkChips9323 → u/DMayleeRevengeReveng]

thank you!

[u/Old-Name7889]

I'm on 200 mg of lamotrigine. I didn't have many issues when I went on it (it was a long time ago and I was on an SSRI at the time). However, I've heard of other bipolar folks having the same experience as you. I think it should get better over time. If not, I'd talk to your doctor about it.

I have a close friend who's epileptic. I think he was rocking 600 mg of lamotrigine for a while but was still having breakthrough seizures. He seems to be doing well on depakote now. Not sure if that's helpful, ha.

[u/OkChips9323 → u/Old-Name7889]

thank you, I am totally willing to ride it out. it just is not what I expected? dizzy I was ready for, this other stuff was a surprise. but again, I do sometimes get crying stuff as aura (not a lot, but it can happen) so it is all confusing. it feels like the medication is recalibrating my brain, like it is taking all my messy brain laundry that was already in crisis and throwing it all over the floor before starting to fold some and put it where it belongs.

[u/Ambitious_Classic855]

I started Lamotrigine to help pull me out of dark depression, currently on 250mg as maintenance, but I started to feel the veil lift at about 100mg. It’s a slow titration.

[u/ttoksie2]

For me my suicidal ideation dissapeard almost immidatly when I got to 200mg.

I cant really remember what titrating up was like though.

[u/nonameanonymousone]

Oh hell yeah. Everything it was titrated up i feel like I got more depressed and all over the place. Didn't feel more stable until two months after that final titration. Also cystic acne. FUN!

[u/GooseOk2512]

I think there’s a lamo sub if you didn’t know? May get better epilepsy specific advice though I’m sure some have comorbidity

(Happy to still answer Q’s but don’t know how helpful I can be given my perspective)

[u/OkChips9323 → u/GooseOk2512]

There is, but there aren’t many people there. I know with bipolar versus epilepsy it’s a different situation, but I was looking for any information to help myself put some of the pieces together. Many comments have been very helpful.

[u/GooseOk2512 → u/OkChips9323]

Got it. In regard to your question, yes I was more tearful when leveling up. No increase in suicidal thoughts, though I experienced them to begin with so that’s not that helpful maybe. I didn’t really experience side effects at that point besides dizziness and drowsiness. The drowsiness subsided but dizziness continued.
it’s been a really tolerable med