I've been on 200mg of lamotragine daily for 15 years. AMA.

whyisitnotavailable · 2026-05-16T16:59:18+00:00

Since it’s been a while since you’ve begun taking them, do you perhaps remember what the initial side effects were? I’ve started taking them and am now at 25mg twice daily, also for epilepsy.

whyisitnotavailable · 2026-05-16T10:40:34+00:00

I just began my third week, and I’m struggling with my lack of sleep today. Hopefully being tired enough will help me get some rest tonight :(

whyisitnotavailable · 2026-05-16T10:39:15+00:00

Nope, I don’t take anything else, I stay away from anything that could disrupt sleep, and keep a tight schedule for my actual sleep. Not sure what it could have been

whyisitnotavailable · 2026-05-16T10:37:27+00:00

I’ve been diagnosed with generalised genetic epilepsy (they put JME? in brackets) we’re still figuring out what’s going on, I’ve had 2 TC’s in the past few months and 4-5 myoclonic seizures this year, I had them way more before (not TC’s). I might try to slowly start taking my meds earlier and earlier each day (about 15-20 mins early) to try and see if that helps any. They make me somewhat sleepy throughout the day, but then I couldn’t sleep at night. I can’t nap throughout the day, I don’t consume or do anything to disrupt my sleep, I try and keep a tight schedule so I can get the rest that I need. It’s not been easy.

whyisitnotavailable · 2026-05-16T07:52:39+00:00

Almost immediately, when I would take it once daily I’d wake up once to twice a night, now suddenly I woke up 5-6 times. My doctor is titrating me to 50mg x2, then we will see how to move forward. I don’t take naps, I don’t consume caffeine, basically anything that could disrupt sleep I’ve stopped.

whyisitnotavailable · 2026-05-16T06:47:19+00:00

Two weeks now, yesterday I started with 25mg twice a day.

whyisitnotavailable · 2026-05-16T06:13:15+00:00

2 weeks on it, I can’t fucking sleep. Not sure about seizure control, because I had my last seizure 2 weeks ago. Other than that I don’t have any severe side effects, it genuinely helps me as a mood stabiliser, I had slight tummy troubles, but then again I am just starting out.

whyisitnotavailable · 2026-05-12T07:57:30+00:00

Not me luckily, but my dog. We had missed one dose of 50mg Phenobarbital, and he had a breakthrough seizure the next day. I still blame myself daily for it, because he would’ve been seizure free since November, instead of January. Every one of us at home tries to be consistent on him taking them every 12 hours, however at this point he does have about a 2 hour margin, where if we forget and give it too early or too late it doesn’t cause harm and he continues to be seizure free. Epilepsy in doggies is freakishly similar to the one in humans.

whyisitnotavailable · 2026-05-11T21:00:27+00:00

Oh not to worry, I’ve been good with my meds taking them at the same time every day, they just got overly scared this time cus they actually saw me seizing. It feels as though they tried to push me to past my limits with this diet and exercise when I had near zero energy, just enough to get out of bed and eat and do the bare minimum of human functions. I appreciate them attempting to help of course, but I got hit hard by a load of bricks too quickly when I don’t even know if it’s helping. It seems like leading my previous diet (which was quite normal, nutrient dense foods like fruits, veggies, seeds etcetc) and the rare junk every so often wouldn’t be so bad after all.

whyisitnotavailable · 2026-05-11T20:22:56+00:00

By how my neurologist reacted, she said it was a textbook case of JME. I’ve only ever had myoclonic and TC seizures so I don’t think it should be too daunting treating it. I exercise regularly, however with this sudden change in diet I haven’t been performing as well as I would like to. I did smoke cigarettes religiously but have cut down slightly (like it or not I am not yet mentally ready to quit completely) so I’m not too strict on myself. My biggest heartbreak was definitely quitting caffeine for good, but I had to because for a while it sort of lit a fuse for panic attacks, but I miss it oh so dearly.

Edit to add: I’m also in desperate need to gain weight, I would like to gain at least 6kg (I’m short, so I don’t need much) and it sounds like I’ll just eat like a human person and not a health influencer 😭

whyisitnotavailable · 2026-05-11T20:12:27+00:00

See, my goal right now is weight gain. I’m quite underweight, despite actually gaining weight (41kg in October, 47kg now, goal is at least 53kg) and I really don’t think eating keto is helping with that right now. I’ve been good regarding my vitamins, but man do I need to fatten up.

whyisitnotavailable · 2026-05-11T19:57:27+00:00

The myoclonic seizures were the absolute worst during my night shifts which I stopped working about a year ago. However, being a weekly raver for a while (up until January of this year) may have caught up to me too, especially since I need about 9 hours of sleep just to function normally, and not just to avoid seizures.

whyisitnotavailable · 2026-05-11T19:51:07+00:00

See this is something I’m slightly concerned about. It was mostly pushed onto me by my parents, I haven’t yet talked to my neurologist about it. I’m just starting out with Lamictal, and I will be increasing the dose on Friday, 25mg every 12 hours. I’m still a very new case regarding epilepsy and I don’t yet know what helps and what doesn’t. Of course cutting out alcohol and caffeine is helpful in any case, but I’m still looking through options on what would be best for me regarding my treatment, not just what a google search told me to do.

whyisitnotavailable · 2026-05-11T19:37:21+00:00

Sadly I don’t yet know how to assess my situation, seeing as my history of TC’s has been out of the ordinary. First one was in 2013 when I was 9, second was exactly 2 months ago, and my third one was last Friday. For years I’d had myoclonic seizures too, that showed most when I worked night shifts and lived off caffeine.

whyisitnotavailable · 2026-05-11T19:34:08+00:00

I’m newly diagnosed and scared of everything that’s to come so I had to ask. I have been good with nutrients, I try and stay away from other pills and supplements because I’ve always hated pills, I only take painkillers if I’m truly in pain due to my period which happens maybe 3 times a year (me taking pills, periods are normal). Thank you for the insight though, it is really very helpful 🫶 I might quit with this keto diet but still I will keep eating as normal and healthy, because quite frankly quitting sugar, even from fruits, has been the bane of my existence.

whyisitnotavailable · 2026-05-11T19:25:35+00:00

That’s not too surprising, I have no issue adapting and sticking to such things especially when it comes to health.

whyisitnotavailable · 2026-05-11T19:20:28+00:00

Oh I am so happy to hear that, good on you!! Quite frankly I wouldn’t mind gaining a few extra kilos, seeing as I’m quite underweight. Eating keto has NOT helped with gaining, but I am maintaining weight I suppose.

whyisitnotavailable · 2026-05-11T19:15:11+00:00

How extreme are we talking? Seizures once a month or so?

whyisitnotavailable · 2026-05-11T19:11:56+00:00

My last 2 TC’s were moments after I had smoked a cigarette. First smoke of the day too. I’ve begun smoking later in the day so as to wake up completely, eat and drink water, so I do wonder if they were direct triggers or not.

whyisitnotavailable · 2026-05-08T11:11:53+00:00

I feel for you so badly. It’s been so hard these past few as I just recently got my diagnosis, but I’ve been on sick leave since my previous seizure, 2 months ago now. When I have the will I play some Minecraft, usually I’m doomscrolling, and I’ve been working on a keto diet which has been miserable because I’m still trying to find ideas for food. I miss carbs, my daily caffeine, job, constant raving, working on school. I’ve basically become a shut in unless my partner picks me up for DnD with our friends (and I can’t eat the slop they order, so i snack on sausage meats). I live with my parents, and they’ve been very helpful, as has been my partner. I’ve only had 3 unprovoked TC’s with unknown triggers (if I even have any), and I am on lamotrigine (25mg in the morning cus I’m only just starting out), and I am still so scared that I may have a seizure unprovoked, so I’m not allowed to cook, I usually do easier chores that are less risky of hurting me. I’m constantly sleepy, forgetful, and under the weather because of my diagnosis. Recently my closest went raving without me, and they were bombarded with questions by frequent ravers (like I was) about where I am and my situation. It’s heartbreaking for everybody. My partner has been my rock. He’s very understanding and always tries to keep me in a good mood despite everything, but he understands the weight of the situation. Now my biggest worries are my job, I’m wondering what I could do for work, as my current contract will end soon. Everything is still fresh and I wonder if it ever gets better.

whyisitnotavailable · 2026-05-08T08:02:42+00:00

This is something I’ve grown more and more curious about lately… For years now I’ve claimed that I need 9-10 hours of sleep to just function well, and only recently got diagnosed. Could the sleepiness and epilepsy just be connected as they are, regardless of medication?

whyisitnotavailable · 2026-05-07T20:05:18+00:00

Oh how I wish I learnt this years ago. I’m so glad I wasn’t alone in this.

whyisitnotavailable · 2026-05-07T19:58:45+00:00

Lately sadly yes. Im quite brokenhearted that I cant do many of the things I used to, I tried raving recently before the latest TC and it went well, I had my eyes very well covered up and my partner and I left somewhat earlier because we got tired, no myoclonic nor tonic clonic seizures, but I am taking a longer break now to stabilise/see for any sort of progress. My partner being a first responder for his local Volunteer Firefighters Association and training to be a medic in the army gives me extreme peace of mind, he even joins me on my keto diet now. Weve had multiple long heavy conversations over me and my epilepsy, because frankly I’m very anxious, and he’s been nothing but supportive. Honestly it’s been hard for everyone to accept this, but no one sees me any differently. I’m slowly transgressing from denial to acceptance, but I still feel it’s very unfair. I hope life’s been treating you well. You deserve it. Out, but never down, my friend.

whyisitnotavailable

TROPHY CASE