Those who follow me on Twitter will probably be aware that recently I made the decision to start taking lamotrigine, an anti-epilepsy medication which is also a mood stabiliser. The reason I made this choice was that recently my epilepsy, which used to cause minimal problems in my life to the point I didn’t need to take daily anticonvulsants, has escalated somewhat.
Why lamotrigine? My neurologist initially suggested keppra, but this was ruled out when I told him that I am prone to bouts of quite bad depression, and also irritability. Keppra has a tendency to exacerbating both of these things, so we decided on a medication which would not only prevent seizures, but also perhaps lessen my depressive tendencies.
I’m writing about this because I found it difficult finding out much information about the experience of adjusting to lamotrigine from a personal perspective. There’s lists of terrifying side effects, such as STOP TAKING IT IF YOU HAVE A RASH BECAUSE IT MIGHT MEAN YOUR SKIN WILL FALL OFF AND YOU COULD DIE, as well as slightly less horrifying but still unpleasant things like dizziness, drowsiness, dry mouth, bad hangovers on just one glass of wine or tremors. Thing is, these lists don’t really help you know much about how badly it actually affects you, so I found myself asking people on Twitter who were willing to give me information, and this was reassuring. So what I want to do is document the adjusting to lamotrigine experience on my blog, where it’s publicly searchable, so hopefully someone in the same boat as me will find the information they need.
I have been taking 25mg lamotrigine, at night, for a week so far. Lamotrigine has a slow build-up, so I’m taking 25mg at night for two weeks, then 25mg in the morning and 25mg (50mg a day) at night for another two weeks, then 25mg in the morning and 50mg at night for two weeks (75mg a day), and finally up to my full effective dose of 50mg in the morning and 50mg at night (100mg a day). The reason for this slow build up is it means you’re less likely to get the nightmarish skin-falling-off rash. I should stress at this point, that the rash is very rare, but it’s serious enough that if you have any skin rashes, especially in mucous membranes, you should stop taking lamotrigine at once and get your arse down to a doctor.
Obviously, this caused me quite a bit of anxiety, and just before I took my very first dose, I went over my skin in a full survey, looking at places where I had little patches of dry skin or ingrown hairs, just so I wouldn’t panic if I noticed these after beginning to take lamotrigine. Nonetheless, nothing scares the shit out of you more than when it turns out a quite common side effect of lamotrigine is itching, and that this does not mean you have The Rash. I was prepared by a Twitter pal that I might experience some itching, and that antihistamines would stop it, but even then, every time I get itchy, it makes me a little worried. Luckily, the itching was worst in the first three days, and seems to have died down now.
The other side effect that concerned me was the idea of the nasty hangovers. I’d heard horror stories from some people using it that even one glass of wine would give you horrendous three-day-long hangovers. Fortunately, this hasn’t happened to me, and I’ve been drinking around two units of alcohol a day since I started (a little part of me is hoping that the lamotrigine expect me to drink a little and not punish me for it).
Other than this, I’ve experienced a bit of light-headedness, just occasionally. I just feel a little bit dizzy for about a minute or so, before everything is fine again. It’s not very severe, and it’s not even particularly annoying, because it’s incredibly sporadic. I’m also a little sleepier in the mornings than usual, but not so sleepy it makes it impossible to get out of bed.
The thing I wasn’t expecting was lucid dreams. I don’t dream much, but I have been dreaming more with the lamotrigine, and they’re lucid dreams. Disappointingly, they are incredibly boring, mundane lucid dreams. Last night, I dreamed that I was an adviser to the Medicis, but my job wasn’t very interesting, I just had to keep the accounts, and I dreamed vividly of making Excel spreadsheets with a quill and ink. Another example: I had a dream there was a wasp in my room, and I was trying to kill it. I realised it was a dream when I noticed my laundry basket was in a different place to usual.
And finally, I’m not sure if this is a side effect because it’s too early to tell, but my pooping has become somewhat irregular. While it was never very regular to begin with, this last week it’s been either constipation or several mega-dumps in a day. We’ll see if that one stabilises.
So, is it working yet, for controlling my epilepsy? Not really, no. I had a seizure yesterday. However, at present, I’m only on a quarter of the effective dose, and it’ll be another five weeks before I’m up to the full effective dose.
I’ll update, every time I up my dose, and if there’s anything else interesting to report in the meantime. If you want to talk to me about lamotrigine, please do! I think it’s important that we share information. You can tweet me, drop me a FB message, or email me: firstname.lastname@example.org