Lamotrigine side effects

[ShaunaM]

I apologize if this has been asked and/or answered previously (or if I have posted in the wrong area) but I have a few questions for those of you who take lamotrigine (I will use L for short). I have called my neuro a few times, but he has been fairly dismissive.

I started taking generic lamotrigine in November in increasing doses of 12.5mg x2. I had been on generic carbamazepine (C for short) for 14 years previously, and had a breakthrough TC in May of last year. In March, my neuro started reducing my C. Everything was going fine until about 3 weeks ago when I got to a dosage of 112.5mg x2 of L, and C was at 100mg morning and 200mg evening. I started getting very bad headaches, mostly in the back of my head, and I developed hand jerks. At first I was afraid I was having partials (and maybe I am), but I have never had partials. My neuro suggested I increase the L faster, and I am at 125mg x2 (top dosage 150mg x2). I am still getting headaches and jerks daily. Also, I have been having trouble falling and staying asleep for the past week or so, which may be compounding the problem. So my question is - has anyone else experienced these side effects, and can I expect them to stick around forever, or will they go away once I am off the C completely (which I will be in 3 days). I realize that everyone is different, but I am so frustrated right now as this is affecting my work and my mood Also, does taking it at the exact same time every day have a stabilizing effect? I have been playing with the timing a bit (+/- an hour or so) to try to help with the sleeping.

Another note: I restrict alcohol and caffeine, and I eat a paleo-type diet in which I avoid glutamate and asparate completely.

Thanks so much in advance.

 

[lindsayschu2]

I just was increasing lamotrigine myself, and when I hit 300 MGs started having bad myclonic jerks at night. Mine were every part of my body, but mostly lower body, all night, and pretty bad. I can say I know mine were the lamotrigine, since they started with the increase and went haywire at 300 mg, and went away completely when I went back down to 200. I do know from my own research that lamotrigine can definitely cause myclonic jerks in some people, and some drs do not prescribe it in patients that have that problem (though some do). Google it. I'm not saying that is what is causing your problem but that is what caused mine, I am 100% certain. I was posting about this last weekend.

 

[ShaunaM]

Thank you! My primary condition is Juvenile Myoclonic Epilepsy. I am more disposed to body jerks in the morning, and those seem to have lessened, but the little ones in my hands during the day drive me crazy, especially when typing. I am a makeup artist as well, so it has had an affect on that, as you can imagine that people don't want wedding makeup applied by someone with jerky hands. So perhaps I should talk to my neuro (again) about reducing dosage.

 

[lindsayschu2]

I can't say of course that lamotrigine is causing your issue, but definitely worth checking in on it with your doctor! Good luck

 

[Nakamova]

Hi Shauna --

I moved this thread tho The kitchen forum, so more folks would see it. I agree with Lindsay, Lamictal can make myoclonics worse for some people and that could be what's happening for you.

The anti-seizure meds affect everyone a bit differently so there's no way to predict for sure what your individual experience will be. Generally speaking it can help to be consistent with the timing of your doses, though for me a few hours difference either way with my Lamotrigine hasn't caused any noticeable issues. You might try taking a magnesium supplement after dinner or before bedtime. It can potentially help you sleep, and it might also help a little bit with the smaller jerks. I take it in magnesium taurate form.

 

[AussieChris]

I have taken L for years and compared to everything else which makes me sleepy L makes me really alert and need less sleep and I love it. My only annoyance with it is jaw and ear pain at times for some reason. Generally it controls any epilepsy stuff really well.

Btw I have had reactions changing from genuine to generic Versions of it and am suspicious it's all not 100% exactly the same chemical composition so watch changing. Chemists have a habit of giving you anything they have handy.

 

[Ruth]

Hi, welcome to CWE.

I take L, thank you for abbreviating it. I take 100 mg tab in the morning. At lunch, I take 1/2 a pill. At dinner I take 1/2 pill.

It made me sleep all of the time. I asked to take it this way because it is what works for me. My neuro wanted me to take one pill 3 times a day. I was sleeping all of the time. This works for me. It is good at stopping seizures.

 

[CathyAnn31]

Wild and crazy dreams, still, and I've been on lamictal since '09.

For the most part I enjoy them.

 

[miranda]

I have the opposite of wild and crazy dreams - mine are hyper-realistic. I usually take ER, but while abroad I took regular, and while I wasn't on ER my dreams seemed "normal" aka weird and confusing and dream-like, but when I switched back I started having the boring realistic ones. Like I'll dream about shopping for laptop cases on amazon and worrying about which ones have free Prime shipping. Has this happened to anyone else?
But generally I am pretty side effect free, especially compared to when I took Trileptal.

 

[ShaunaM]

Thank you everyone for taking the time to share your input! You were all very helpful.

Just to give you an update, I am off C completely and on full dosage of L (150 mg x 2 daily), and have been for over a month. Some of the side effects have lessened dramatically. The headaches are almost gone, I might get a mild one every couple of weeks. I have had almost no myoclonics in the morning, and while I still have mild hand jerking, it's at a minimum. The sleeping, however, got worse and worse, to the point where I was awake most of the night. It was only this past week where I was almost able to sleep through the night (waking one or twice, but immediately falling back asleep) for 3 nights in a row. I hope this is a good sign!

 

[Tez_20]

Hello Shauna,
I was put on lamotrigine when they first come out on the market years back and the only two side affects I got from the med was rapid weight gain and also a rash which took over my body, as you do get these side affects also with the med and I do recommend keeping to a scheduled time with the medication as it's always best where seizures are concerned.

The list below shows all the side affects from the drug.

Very common: More than 1 in 10 people who take Lamotrigine

•skin rash or rashes including Stevens-Johnson syndrome or toxic epidermal necrolysis - some of these may be fatal. Children may also develop a fever with a skin rash. Seek immediate medical advice if you develop a skin rash
Common: More than 1 in 100 people who take Lamotrigine

•aggressive behaviour
•diarrhoea
•difficulty sleeping
•feeling dizzy
•feeling irritable
•nausea
•sleepiness
•tiredness
•tremors
•vomiting
Uncommon: More than 1 in 1000 people who take Lamotrigine

•balance or coordination problems
•blurred vision
•double vision
Rare: More than 1 in 10,000 people who take Lamotrigine

•eye or eyesight problems
•meningitis or meningitis-like symptoms - seek medical advice if you develop any meningitis-like symptoms
Very rare: Fewer than 1 in 10,000 people who take Lamotrigine

•abnormal laboratory test results
•blood and bone marrow problems
•confusion
•extrapyramidal effects or abnormal muscle movements in people with Parkinson's disease
•hallucinations
•hypersensitivity syndrome - you must seek immediate medical advice if you get a fever, swelling around the face or lymphadenopathy
•liver problems
•lupus or lupus-like problem
•movement problems such as problems controlling movement or unsteady movement
•tics
•worsening of parkinson's symptoms
•worsening of seizure frequency

 

[horsehead]

i take L and have had sleeping issues with it. It is a new med for me . The sleeping issues happened around the 50mg to 100mg dose but have gotten better now

 

[Zolt]

I also took L and for like 6 months it worked well. But like my current med, it pushed my seizures out from one every month to one every 1.5 - 2 months. I thought that was great. But when i had the seizure, it was like 4x worse then what i was use to. So i complained and had to have it changed.

Now i'm on Gabapentin 1800mg per day and it's a drug that i'm glad to be on.

iano: op:

 

[Tez_20]

Myself I'm on a right cocktail for quite a few issues besides my seizures as I used to fit over 18 and more daily besides going into coma's and I was tried on Levetiracetam (Keppra) quite a few years back, I'm on an high dosage daily...seizures have half besides no affect with the drug.
It's one drug I'd recommend to anyone to try.