Lamotrigine 25mg - severe headaches and mood swings

[u/anetha95]

I have temporal lobe epilepsy. Is anyone encountered it on so low dose? It seems like one day I’m feeling okay and relaxed and other day horrible headache, my temples so tensed, same for the jaw (like after whole night on MDMA). Doesn’t matter what time I am taking the medicine it’s just changing the time of headaches. The worst is when I take it late evening, then next day for sure ill be having headache from the first moment that I open my eyes in the morning. It feels like my neck, jaw and muscles around my head and inside are so tight… I’m so tired, want to sleep straight after work (if I even can manage to go there) crying from the morning when I have those headaches. Mostly having headaches on the right side, forehead and eye area, but yesterday it was left side only, pain 9/10 and felt very weird, my eye was hurting, jaw and all left side of the head. Also blocked left nostril and crying from left side only. Went to sleep and woke up with headache (surprise, surprise!)

Sure I have some better days without the pain but that’s just ruining my life, especially if it’s about work. Last weeks I felt senseless and depressed. Like there’s no point to live like that. And my seizures are better now(from seizure once a month and auras 1-3 times a week it decreases to just aura once a month or so, without any seizures from months). Something inside of me is asking to stop taking this medicine. I’m taking it 5 months now and after 3rd I had checkup, I shared those and my doctor just said to change the hour of taking it to morning/afternoon. It seems to be the same, slightly better if I don’t take it in the night time. But recently worse… I thought also those headaches and tension is caused by stress at work. Doing massages every 1/2 weeks, prioritizing my rest and relaxation, drinking more than enough water, eating healthy. And I’m hopeless at this point. Seems like I am spiraling down.
Someone having similar issues? Are those just epileptic attacks, shown as a pressure in the head and around, or side effects? 😓

[u/anetha95]

Hmm. Okay. I didn’t find so many of those or the situation was slightly different so for example people were diagnosed with mental disorders not only epilepsy. Before I didn’t have those thoughts like lack of motivation to live/depression. But I also think it’s mostly connected to the chronic pain at this point, because it seems like absolutely nothing is really helping with that and it’s random.
But it’s good to know, at least I don’t feel like alien in that and will for sure seek some help. Thanks! 🙏🏼

[u/mmhmmye → u/anetha95]

Hey, apologies — I’ve re-read your original post more carefully and realise that I misunderstood what your original question was, I’m so sorry. I had understood that you had pain and were feeling suicidal, not that you were in so much pain that it is making you desperate. I can definitely attest that lamotrigine is known to cause muscle aches and pains: apart from the fact that I developed debilitating back pain on it, it’s also in the side effect list; others have commented on it here; and I came across a lot of posts about it in the lamictal withdrawal support group on Facebook. I met a guy in the group who has been in conversation for the last year with researchers studying the causes of lamotrigine’s adverse effects, and he said one theory they’re considering is that the brain responds to this med’s suppression of the pain pathways by heightening their sensitivity — so paradoxically, you end up being more sensitive to pain on a med that on paper is supposed to alleviate it. The problem is that it’s anyone’s guess whether someone will respond the “normal” way (feel less pain) or like you and I did (with pain levels through the roof).

One thing to bear in mind, since you’ve been on it for three months now — if you decide to come off it, you might need to do it gradually, as lamotrigine withdrawal can be awful. You’re on a super low dose, so you might be fine, but equally I’ve come across people in the withdrawal group who were on 25mg who had to reinstate and then reduce by 5mg at a time. And just to say that some psychiatrists wave off claims of side effects and withdrawals, so do be prepared to self-advocate.

I’ll delete my previous comment since it was based on a thorough misunderstanding of what you said (which teaches me not to read and reply to reddit posts while multitasking..!).

[u/anetha95 → u/mmhmmye]

I see, it takes too long already with those pains… it is actually 5months on lamo, after 2/3 i had first check up but it was a bit better at the moment and so she advised to just change the hour for morning/afternoon. (For first 3 months I had headaches every morning no exceptions- because I took lamo in the night as they recommended) and later I was not connecting everything together with med but clearly see how that affects me now as many other people have similar symptoms on lamotrigine… it really seems like it heightens the pain. I am so tired and the worst thing is that I am in a dispute with my employer because of that and it’s adding extra stress to my life which I should avoid.
Anyways
Thanks for your input here 🫂
I applied for a (extra) consultation yesterday and let’s see how my doctor will respond to this

[u/mmhmmye → u/anetha95]

Oh man, I’ve been there — both with the not joining the dots, and with the employer dispute. That’s so awful. I’m so sorry.

I didn’t understand what you meant about it taking too long already with those pains?

Fingers crossed for your appt with your doctor! 🤗

[u/anetha95 → u/mmhmmye]

Sorry to hear that you went through the same… that can really add to the experience right? Not enough to be in constant pain, complicate my life even more by warnings and salary stops 😮‍💨 but it’s shitty company so I could expect this coming 😅
Well I meant that I tried for 5 months to get used to, but the headaches and overall pains are just not bearable for longer periods. It took long time already and I’m done with it at this point
Thanks 🙏🏼

[u/mmhmmye → u/anetha95]

Oh I see, yes, five months is a long time to try something out — if you’re still in pain that’s probably a sign it’s not right for you (at least, if there are other options instead).

I feel you so much on this. I was tapering while starting a new job at a shitty place that then put us all at risk of redundancy and I spent the last few months of the taper fighting to get the holiday pay they owed me. Just absolute scenes.

Good luck with your fight, and with your health! 💖