Experience with lamotrigine side effects??

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Mellismom

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Hi everyone. Just started up on lamotrigine almost 4 weeks ago and I have never taken medicine for epilepsy before. I must admit I'm a bit shocked to find I get so many side effects already and the medicine hasn't even taken effect against the seizures yet - which of cause I hope it will soon. My stomach hurts, I have diarrhea, sometimes headaches, my husband has noticed I'm a bit more irritated and I have nausea, sometimes I throw up, and I'm not as happy as usual.

What is your experience, will the side effects be better or even go away eventually or am I to live with this if I continue taking the medicine? I think I rather want the seizures than this but I do also need a driver's license. Are these side effects only there till the body has adjusted? I am scared to take 75 mg as I have to on Wednesday. The side effects started when I went from 25 to 50 and I'm supposed to end up on 150.
 
Hi Mellismom,

I am currently taking 400mg a day (200 day, 200 night) and I do not suffer from these side effects. I would definitely tell your doctor ASAP about these side effects you're experiencing, especially since you're not benefiting from it (i.e. still having seizures). Different medicines have different effects on different people. I'm no doctor and don't know all the facts, but it sounds like this might be doing more harm than good. Of course be sure you're doing all of the basics water, eat, rest, blah, blah, blah.
:soap:
 
It can take a few months to adapt to some medications that have a slow titration, such as lamotrigine. I was on it at one point, and I found it was a mood booster for me. I had intermittent GI issues, but they cleared after 6-8 weeks, even with further dose increases. It generally reduced most of my seizures, but made my myoclonics worse so had to switch to a different medication. Once I was at peak dose (250 mg) I had mild dizziness for a couple of hours after the daytime dose as well as mild to moderate eye sensitivity to light but both were manageable. I wore sunglasses even inside, and that helped with the eye sensitivity and even reduced the dizziness.
As for the diarrhea, I found it helped to reduce my fiber intake during the adjustment period, kept spiciness of foods to a minimum, and avoided anything harder to digest (eg. beef and pork are harder to digest than fish, for starches I found potatoes easier to digest than rice or pasta, and it helped to ease up on the gas-producing foods like broccoli and baked beans).
 
I found that when I was on lamictal/lamotrigine I had blurry vision and dizziness, as well as the GI issues. I also found it really hard to talk, like I would know what I wanted to say but I would jumble the words. Memory was pretty tragic to. For me the side effects stuck around until I eventually went off of it.
 
I've been on Lamictal ever since I was diagnosed 12 years ago, and the only side effect I recall having was drowsiness. That lasted for about two months or so but went away. If it's causing this many issues, I'd definitely consult your neurologist about it.

I hope everything works out for you!
 
I've been on lamotrigine for maybe 17 or 18 years now. I was on 400 per day (200 am and 200 pm) and my seizures were not too well controlled. Whenever I tried to increase the dosage ( 500 was the highest I got) I got really drowsy and there was no change in seizure frequency so I went back to the lower dose. I tried a few other meds but their side-effects were not tolerable and they didn't control the seizures so I went back to lamictal. To make a long story shorter, I FINALLY discovered a pattern to my seizures (thanks to seizuretracker.com) which made me realize that there was a pattern to the times of day I had seizures. In talking with my pharmacist I realized I am a fast metabolizer of meds, so I started taking them four times a day. I got up to 650 mg per day fairly quickly, with zero side-effects, and zero seizures for 4 1/2 months now. In 33 years I have never had an epileptologist or neurologist even suggest four time a day dosing, but there is no doubt that it worked for me. Maybe you should try it as well?
 
Hi everyone. Just started up on lamotrigine almost 4 weeks ago and I have never taken medicine for epilepsy before. I must admit I'm a bit shocked to find I get so many side effects already and the medicine hasn't even taken effect against the seizures yet - which of cause I hope it will soon. My stomach hurts, I have diarrhea, sometimes headaches, my husband has noticed I'm a bit more irritated and I have nausea, sometimes I throw up, and I'm not as happy as usual.

What is your experience, will the side effects be better or even go away eventually or am I to live with this if I continue taking the medicine? I think I rather want the seizures than this but I do also need a driver's license. Are these side effects only there till the body has adjusted? I am scared to take 75 mg as I have to on Wednesday. The side effects started when I went from 25 to 50 and I'm supposed to end up on 150.

Hello Mellismom,

Sorry to hear the lamotrigine are making you feel so badly...everyone who takes seizures tablets react differently with them.

I was on lamotrigine in my early 20s with bad nausea and feeling with my stomach aching, told the neuro several times and he wouldn't have it that it was the med...until a rash started forming on my body similar to an hives rash plus weight gain was another issue but when the rash started on my face...I mays well have had an heart attack seeing him as the side of affects off the drug finally sunk into his brain.
He withdrew me off the med dropping one only monthly as I was on 5 daily what the quantity was I can't remember sorry but I do know each time a tablet was dropped each month I nearly lost a stone, as those meds took me from 9st upto nearly 15st.

I'd see your GP or specialist about the med...as below is some info on affects besides a link for you :)


Important information

Lamictal may cause a severe or life-threatening skin rash, especially in children and in people who take too high a dose at the start of treatment. Serious skin rash may also be more likely to occur if you are taking Lamictal together with valproic acid (Depakene) or divalproex (Depakote).

Seek emergency medical attention if you have: fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

You may have thoughts about suicide while taking this medication. Your doctor will need to check you at regular visits. Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Do not stop taking Lamictal without first talking to your doctor, even if you feel fine. You may have increased seizures if you stop using Lamictal suddenly. Contact your doctor if your seizures get worse or you have them more often while taking this medicine. Taking this medication during early pregnancy can increase the risk of the baby being born with cleft lip or cleft palate. Tell your doctor if you are pregnant or if you become pregnant during treatment.


http://www.drugs.com/lamictal.html
 
Hi again and thank you all for responding. It sounds like it is not usual to have that many side effects. Actually, a couple of days after I wrote I was feeling better. So I guess my body just needed to adjust to the meds. I thought that maybe I should just wait and see if I start having less seizures when I up my dose next time. (that is tomorrow)

BUT... now I have had two more seizures than usual and I haven't even upped my dose yet! I don't know if it is caused by the medicine or if it is a coinsidence and just because I don't take enough medicine yet to take effect against the seizures - or it simply isn't working. Today as I took the two pills I'm supposed to take in the morning, something strange happened. And I am definitely going to call my neurologist. Since I took them I have been feeling really sick. I walk as if on a boat in high waves, it feels like the floor is moving up and down. My whole body feels weak and my legs can hardly bear the weight of my body. I also freeze and my stomach aches again. Maybe I'm just coming down with something?

Do you think I should call someone right away or can it wait until the morning? This is not the time to call my regular doctor so I can only get a line for when it is really urgent. Could it be the combination of the medicine and something I ate? And should I up my dose tomorrow? It is supposed to be in the evening so hopefully I've talked to a doctor by then.
 
Hi again and thank you all for responding. It sounds like it is not usual to have that many side effects. Actually, a couple of days after I wrote I was feeling better. So I guess my body just needed to adjust to the meds. I thought that maybe I should just wait and see if I start having less seizures when I up my dose next time. (that is tomorrow)

BUT... now I have had two more seizures than usual and I haven't even upped my dose yet! I don't know if it is caused by the medicine or if it is a coinsidence and just because I don't take enough medicine yet to take effect against the seizures - or it simply isn't working. Today as I took the two pills I'm supposed to take in the morning, something strange happened. And I am definitely going to call my neurologist. Since I took them I have been feeling really sick. I walk as if on a boat in high waves, it feels like the floor is moving up and down. My whole body feels weak and my legs can hardly bear the weight of my body. I also freeze and my stomach aches again. Maybe I'm just coming down with something?

Do you think I should call someone right away or can it wait until the morning? This is not the time to call my regular doctor so I can only get a line for when it is really urgent. Could it be the combination of the medicine and something I ate? And should I up my dose tomorrow? It is supposed to be in the evening so hopefully I've talked to a doctor by then.

You sure you didn't have a seizure?
 
hi mellis,
amount of and type of side effects can be polar opposite, aed's are alot more destructive to the body than is put into common knowledge. two people roughly of same age, lifestyle and type of seizures can go on the same med same dose and while one person doesn't feel too bad the other can hardly function.
i've been on it 3+ years and had two reactions- day one i was hit with the rash as Tez_20 stated, and in the first 6 months or so i lost a considerable amount of hair (fortunate tho to have very long thick hair so it wasn't noticeable to anyone but me pulling the handfuls out).
as masterjen said lamotrigine is very slow to ease into, one of the slowest of all e medications. takes months, and strong physical reaction at first is not uncommon. getting to the prescribed dose is the purpose for seizure control, and if there's a few seizures on the way that doesn't mean it won't work.
definately fill in your doctor's receptionist on all that is happening to you tomorrow, and request an immediate appointment. from there (i'm hoping this is a neuro?) they will base your physical and seizure reaction on whether or not you stay on it.
i'm still on 150 2x and haven't had side effects since 2011. this is a high stress issue for you (i get it, went through it on vimpat), and stress is a main seizure trigger. not to say that's what's causing you to still have seizures but it's worth watching for. one more symptom = higher stress = high chance of seizure trigger. we're all with you my dear, epilepsy is no fun :soap:
also- what other meds, if any, are you on? sometimes it's simply that the two together don't agree.

all the best, nat.

:hugs:
 
Denverboz: It did feel like a seizure. I've never had one that lasted for hours before?

Qtowngirl: Thank you for the information about the medicine. It makes sense with the stress and I should probably find a way to calm myself down. I also have other things that causes stress and my seizures always get worse when I'm stressed. Epilepsy really stinks!
 
With all the meds I'm on I've got at least one or more of the side effects it causes.

I'm also on Lamictal and I don't remember how long it's been since I've had a solid bowl movement. I asked my neuro about it and he said it was one of the side effects.

In general, with my neuro at least, unless I say that I can't handle the side effects from the med he won't take me off of it. He will take me off the med himself if he sees the side effects are so severe I'm having that I need to be taken off of it.

Stress almost always causes seizures for me. Anytime I'm stressed out about something we know there's probably a seizure on the way. Try to find something to do that you can do to get away from life for awhile. See if you can find some sort of hobby. If you can find a friend or family member that you can talk to and let loose about what's going on, they don't need to give you any advice they just need to listen to you get it all out, is a good help for me.
 
Denverboz: It did feel like a seizure. I've never had one that lasted for hours before?

Qtowngirl: Thank you for the information about the medicine. It makes sense with the stress and I should probably find a way to calm myself down. I also have other things that causes stress and my seizures always get worse when I'm stressed. Epilepsy really stinks!

I've had plenty of partial seizures that lasted for hours and/or come in waves for days. It is very possible it was a partial seizures. They are awful. I don't hurt myself physically but the toll they take on my brain and energy is almost unbearable. Last time I forgot how to spell and write my own name and nothing made sense for a few days after the seizure/s ended.
 
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