Lamotrigine experiences anyone? Xx

[MarmadukeM]

Anyone tried/is on lamotrigine?
im coming into week 4 and i actually feel worse! Have a lot of crap going on in my personal life which is obviously having an impact but I am starting to feel shaky and my sleep is getting worse plus mood is terrible (very dark thoughts). I felt better before I started it but I can’t sift the life events from the mental health problem if you know what I mean so I’d like to hear of anyone else’s experiences? Good or bad! Xxx

This may not be massively helpful as I take it for epilepsy, but insomnia is a common side effect. Mine certainly improved over time, but I definitely remember my sleep being affected for the first few months

My daughter takes it for epilepsy. The side effects for her seem to have been - nasal congestion, some hair loss and day time tiredness. She also definitely has some cognitive impairment - memory, processing speeds. But as she also takes Keppra it’s hard to tell what causes this. I presume you’ve started on a suitably low dose to titrate up if necessary.

Overall though it’s been ok. She is mostly fine and it does work for her so it’s worth it.

That is good to know thanks. My mental health gets derailed when my sleep goes to pot so it’s something they keep an eye on. I’ll see how I get on but prob won’t stay on it if the sleep gets worse. X

Thanks - yes it’s hard when there’s multiple meds to know what is doing what. Glad she is good on it tho. I think as mines for mental health I feel a bit unsure about how useful it’s going to be for me. I’m not the most patient when it comes to tolerating side effects !

Once I had reached 200mg I felt noticeably better.

It’s a bummer it’s such a slow titration tho eh? X

It didn't agree with me when I was prescribed it following a tonic-clonic seizure 10 years ago. I felt dreadful on it. Permanently exhausted and drained, couldn't function. After a while I came off it without discussing it with my consultant (who was patronising, misogynistic and dismissive of all my concerns), and felt a lot better without it. Haven't had a seizure since.

Sadly, I developed severe nightmares, and then headed off into hypomania on it. But it was being combined with other meds, so that's a very personal experience. I hope you feel better soon x

It is, but for good reason.

Overall it has stabilised my mood in the most part. I still do get highs and lows, but nothing like they were before Lamotragine and those periods are usually set off by extreme stress.

It’s been utterly life changing for me- I often joke that you’ll have to prise that stuff from my cold dead hands! I take it for bipolar disorder, and it works really well to stabilise my mood.

I remember the titration up to a therapeutic dose being irritatingly slow. I’ve been on it now for nearly 15 years so I can’t really remember how long it took to really kick in; I seem to remember starting to feel better once I hit 100mg, and fully stabilised when I got to 200mg. My sleep was really bad when I first started it as I had hypomania so I can’t really comment on if it affected it, plus I’ve had lifelong insomnia to some extent or other. I’ve had some hair loss too, but given I’m also perimenopausal it’s hard to say whether lamotrigine is causing it. Sometimes I get slightly blurred vision, and occasionally night sweats; however again it could be perimenopause doing it as it’s got worse in the last year or so.

One thing that I do remember is my psych telling me that it has an incredibly short half life and until you stabilise it’s really important to take it at exactly 12 hour intervals; even now if I’m more than a couple of hours late with a dose I get a nasty shaky feeling along with numb face and lips- could something like that account for your shakiness?

I took lamotrigine for five years and felt so good on it for mood stabiliser. I’ve recently switched to lithium and wish I could go back. I did have insomnia at the start but it passed. Good luck with the titration.

Thanks - sorry you are having bad time with lithium 🙁mental health meds are a minefield!

I did nt know that about the half life. I was not really spacing it 12 hrly. Will try taking it later this evening 👍I actually didn’t take one last night to see if it would be better but it was worse, woke at 3,4,5 then up
5.30
shaking and feeling cack so I’ll be a good girl and keep taking it 😖😂

Glad you have been better without it - yeah the doctors can be right arseholes.

hope you got sorted with something that suited you better x

It might be that making things feel worse then- I certainly start to feel shaken, spacey and absolutely poo if I don’t! so much so I can tell within a few hours if I’ve missed a dose.

What dose are you up to, if you don’t mind me asking?

I take it for pain & it has been incredibly effective with limited side effects.

My wife had a psychotic episode linked to lamotrigine. Speak to your doctor just in case. It was quite severe and took coming off lamotrigine and going onto anti psychotics. A mental health nurse at the hospital said it is a rare reaction where people feel almost like they're living in a fairytale. Having said that, lamotrigine is a wonder drug for me so we're all different

Just on 25mg morning 25mg evening.
I go up next week to 100mg total so guessing will be 50mg twice a day. X

Heck! I’m in quetiapine 300 so that should Keep a lid on that side of things hopefully. My life is more of a nightmare than a fairytale currently 😂

I've been on it for years - bipolar. It's strange because I don't feel it does me any good as such, but when I've come off it, I feel the lack of it although not in any spectacular way! Very hard to describe. I still get extreme highs and lows though.

My sleep is awful and this thread is making me wonder if it's that . . .

Good luck with whatever meds you choose, it's so hard to find the right ones

I’m on 300mg of lamotrigine for bipolar. It’s hard to say if it helps because I’m also on lithium and aripiprazole but so far the combination seems to be holding me in a somewhat stable mood (I say that as I’m just coming out of a major down).

I take 250mg for bipolar. The only really side effect I get now is insomnia, but then I suffered with that before anyway. It’s been life changing for me, stick with it if you can.x

I was prescribed for mood disorder about 15 years back. Took it for months, there were only two noticeable effects IMO. I was mildly dissociative and felt a slight sedative effect. I didn't mind feeling a bit calm but the Alexithymia was disturbing and what ultimately made me come off it. The other effect was it gave me even more chronic and constant earworms than normal, and actually made the cacophony of racing thoughts and ideas even more pronounced, but I'm pretty good a filtering that anyway I just had to work a bit harder for a while.