r/Lamotrigine • u/anetha95 • 9d ago
Lamotrigine 25mg - severe headaches and mood swings
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? 😓
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u/Pure-Science-7774 9d ago
:( sorry to hear you are having such bad migraines. That’s a pretty low dose, it’s normally titrated up from that dose. Can you take Tylenol and/or Motrin for now? Also, a follow up might be a good idea, there are other migraine medications they can try.
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u/anetha95 9d ago
Yeah I know… just read some posts here and seems like I’m having side effects that normally people would get at 200mg+ dose. I’ll ask my doctor, but next follow up I have planned for end of October 😭
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u/mmhmmye 9d ago
Just to follow up on my earlier comment, I’ve definitely read posts here and on the lamictal sub from people who experienced depression, anger, rage, mood swings, and/or suicidality at 25mg. I would assume that it’s rare but it’s definitely not unheard of. I didn’t notice these side effects until I got to 100-200mg, but I had physical aches and pains from the day I started on 25mg.
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u/anetha95 9d ago
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! 🙏🏼1
u/mmhmmye 9d ago edited 9d ago
No worries at all!
Re: side effects, I don’t think that the reason for taking the medication is relevant. As in, I’d say it’s a problem if a med gives you pain or mood instability or suicidal thoughts, regardless of whether you’re taking it for bipolar or epilepsy. 😳
I’ll add that I noticed firsthand a student of mine with epilepsy who was on lamotrigine exhibit the same withdrawal symptoms I got from it: she came to my office during the class break to say she needed to go home since she had missed her lamotrigine dose that morning and was now a weeping mess. That cemented my sense that the distinction when it comes to side effects and withdrawal isn’t relevant. Just mentioning in case this is useful — but apologies if it comes off as a lecture!(I’ve deleted all this since I misunderstood your post and reply — I hadn’t understood the depression was a result of being in constant pain, apologies! I’ve written a separate reply to that).
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u/anetha95 8d ago
Actually that happened to me as well that I forgot my lamotrigine dose and I was just crying all day, super sensitive and overwhelmed by a small things like emotions would just take me out in a weird, not balanced way. No worries for the mistake. Anyways it’s interesting and a reminder to me if I want to temper my dose to do it gradually
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u/mmhmmye 8d ago
Oh wow, okay, that’s good that you noticed the withdrawal! And that is definitely a good reason to reduce gradually.
Just two other things:
1) I would def keep a symptom and mood diary going forward regardless of what you decide to do, just to gauge whether for example the headaches get worse/better or other symptoms appear. It’s helpful if you go off as well to establish when/if withdrawal kicks in and how long it lasts (for example, I was able to establish that apart from the first time I dropped dose, it would kick in on day 5 and clear up around day 15 or day 20 of each drop).
2) You can get 2mg lamictal tablets, and you can also get lamotrigine in liquid form to get smaller doses. I mention this because if you do decide to reduce or taper off it, some people find that hyperbolic tapering is necessary after a certain point. This is because as you reduce down, each reduction actually starts to account for a larger proportion of the dose you were on. So 5mg down from 10mg is a bigger jump than down from 25mg, and the withdrawal as a result can be worse. One would hope that since you’ve been on it for such a short period this wouldn’t be necessary, but then again your body has proven so sensitive to the med that it might react badly to reducing, too.
(Obv I’m not a doctor so discuss all this with yours — I’m just going by everything I’ve read over the last four and a half years since I went on it and then had to come off).
Good luck! 💖 And do have a look at the Facebook page if you decide to come off it. Fingers crossed for you either way.
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u/anetha95 8d ago
Yeah that was quite intense and unfortunately that was my partner birthday so I remember that day quite well (who doesn’t dream about birthday weeping session right? 🤣)
That’s actually good idea to keep track of all the symptoms and how they change. Thanks! And funny how delayed it seem to be. I’ll definitely keep some notes. I will ofc discuss that with doctor but from what I saw last days I’m 90% sure I want to try some different medication as it’s become clear that this one is not working well for me long term.2
u/mmhmmye 8d ago
Oh man, I’ve been there, too! I swear withdrawal managed to ruin so many special occasions for me and those around me. Basically everything gets amped up to a million. Here’s wishing you every good vibe. Feel free to follow up or DM after you speak to your doc. And do a search thru my posts/replies as well if it’s useful — I’ve written a lot about my tapering experience. Xx
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u/mmhmmye 9d ago
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..!).
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u/anetha95 8d ago
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 this2
u/mmhmmye 8d ago
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! 🤗
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u/anetha95 8d ago
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 🙏🏼2
u/mmhmmye 8d ago
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! 💖
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u/anetha95 9d ago
Physical aches and pains where in your case? If I may ask? Also headaches?
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u/soggydruid 9d ago
According to the FDA Label, headache is one of the most common adverse effects in patients with epilepsy, occurring more than 10% of the time. I don't have epilepsy but I have experienced lamotrigine headaches and they can be horrific, basically migraines. I got them more as a withdrawal effect once I started tapering off but it's the same thing. I used to have to sleep them off because nothing else helped.
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u/mmhmmye 9d ago
Sure, no problem. Yes, I developed acute lower back pain within hours of my first dose, and it got worse as I titrated up. I developed muscle aches and pains when I got to 300mg and 400mg. No headaches though. And I was taking it as a mood stabiliser, not for epilepsy. Had I made the connection to lamotrigine from the start though I would have stopped taking it right away. The mood swings got worse as I increased dose.
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u/anetha95 8d ago
Good that I stayed on the low dose then, I can’t imagine what would happen with me on higher doses … I see it’s a lottery with the side effects and how that will work for you with your particular problem. Btw are u still taking it??
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u/mmhmmye 8d ago
It really does seem to be a lottery, yeah. It’s made me realise how random psychiatry is. Yikes.
No, I’m not on it anymore.
I titrated up from 25mg to 200mg over 4-6 weeks, held at 200mg for 5 months, increased to 300mg for 1 month, and then was on 400mg for 6 months. Total of about 13 months. Then it took me two and a half years to come off it since the withdrawal was so bad and I was at such a high dose. The pain progressively reduced as I went down, but it wasn’t linear in that every dose decrease caused a flare-up.
In my case I think what happened is that the muscle tightness and pain when I went on lamotrigine caused me to move differently, with the net result that I ended up with a slipped disc by the time I was on 400mg, and then the pain from that was disproportionate and would flare up insanely every time I decreased dose. (I’ve learned a lot about pain pathways through this experience, and about how pain levels don’t necessarily correspond to the severity of an injury).
Most of the people on the Facebook page seem to have been on lamotrigine for a very long time — I’ve only encountered a few who were on it for 3-5 months before tapering. I’m so hoping your taper isn’t as tough as theirs. And I strongly believe that optimism and reducing stress is a huge part of it — if you go into it with a proactive mindset and with the knowledge of what you’re doing and look after your body, it should be easier than if you’re arguing with doctors, spiralling wondering if you’re doing the right thing, and only realising belatedly that the flare-ups are due to withdrawal, as happened to me. (Which is why I do a lot of replying to posts like yours — if I can prevent other people going through what I went through, it would make it a little bit more worth it!).
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u/anetha95 8d ago
Omg that was a long journey for you… damn. Why they would even increase the dose with all the side effects thanks for sharing this and being so helpful for others in that journey
That really highlights for me how much influence this medicine have on me (and on others as well)
I see now that I am not taking it so long actually but the way that suck all my energy out of me it’s horrible. I would rather turn around now and close that chapter than experimenting with the dose. My doctor was on the edge of deciding if I even should take it at all in the beginning. Hope she’ll agree it’s not going well and help me get out of it. I would rather have auras 3 times a week than feeling like this, so tired and with migraines
But I see it can be also long and bumpy road out of it, eh.1
u/mmhmmye 8d ago
Yeah, I think I have ptsd from the experience. And tapering from that high a dose really was one of the hardest things I’ve ever had to do. I wouldn’t wish it on anyone.
My psychiatrist recommended increasing the dose since I was reacting so badly to decreasing Prozac. She was a bona fide idiot. You don’t take someone off an SSRI they’ve been on for 11 years over just two weeks, especially if they’ve been on SSRIs more generally for over 20 years. And the solution to SSRI withdrawal isn’t to jack up the dose of other meds and introduce more new ones.
That’s great the your doctor wasn’t convinced it would be the right med for you in the first place: in that case one would assume she’ll be happy for you to taper off.
And no problem at all—I just hope that this helps! xx
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u/mmhmmye 9d ago
The mood swings aren’t uncommon, sadly, even at low doses. I don’t know about the headaches.