Here is a great question from a reader – Amy- regarding Lamictal (Lamotrigine) side effects.
My 18 year old son with BP, anxiety, depression, OCD, ADD tried Lamictal from March to June of this year and once he got above the 100 mg. mark he developed facial tics (squeezing his eyelids shut and mouth grimaces). We went off Lamictal gradually for about one month, and the facial tics disappeared. He had about 3 weeks completely off, then on the advice of Dr. Papolos (author of The Bipolar Child), we started up again and he is on 25 mg./day. So far, so good. But that dose is really equivalent to 50 mg/day because he takes 1500 mg. Depakote as well, and Depakote intensifies the Lamictal in the blood.
Has anyone else experienced facial tics with Lamictal? Dr. Papolos as well as my son’s current pdoc had never heard of that, but a friend who researched drug interactions/side effects on line did come up with 5 cases that have been reported.
Hi Amy,
I love questions that I can answer from personal experience.
I’ve been on Lamictal since 2005. It has saved my life numerous times. I call it my wonder drug- but this doesn’t mean it’s side effect free!
You can definitely have tics with Lamictal. I have them all of the time. Sometimes they are so bad they’re comical. I can practically jerk and twitch myself out of a chair. As awful as it can be, it can really make my mom laugh!
I even have one that makes me tap my cheek a few times after my body has jerked around. That one is weird.
Lamictal is an anti- epileptic drug. It’s powerful and it affects our brains. It makes sense it would have physical side effects such as controlling our muscle movement.
Dr. Papolos was completely correct about dosage. I only have these tics when my dosage is not correct. I’m the opposite from your son. I get the tics- I call them twitching- when my dose is too low. I always know if I’ve made a mistake with my meds when I start to twitch all over the place. Messing with my meds can also cause some serious leg pain similar to restless leg syndrome.
I take 500 mg of Lamictal – 200 mg in the morning and 300mg at night. I have to put them in dated pill boxes as missing a dose is really painful for me mentally and physically.
I believe in the comprehensive treatment of bipolar disorder- I use my Health Cards and my Lamictal to have a functioning life. It’s a fact of life that these strong meds come with side effects- I try to minimize them as much as possible.
In terms of five cases being reported- this is not uncommon. Thousands and thousands can have Lamictal side effects that go unreported- as there is no place to report them unless we are in a study.
Your son is lucky to have you Amy! I hope he does really well on the new dose.
Julie
Hi Julie, I take 200 mg. Lamictal daily in the morning and am thrilled that it is now available in generic form. My life is so great with this drug that I would pay any price for it but the lower priced generic is much appreciated. My 25 yr old son and I are both on it. I began taking it in the fall of 2006 and as I’m sure you know, my sense of reality righted itself and I gradually became more clear in my thinking. By spring of 2007 I was convinced that my son would benefit from this drug also. The changes in his life are astounding. We have both instituted our own routines for making sure we take our med on time, daily. You’re accurate when you describe a missed dose. Life goes way off course. I’m sorry that you have neck pain but am so glad that you told us that. I too have extremely bad neck pain. My chiro can’t make a dent in it. I’m sure that it won’t bother me a bit now that I know it might just be a drug side effect. I can certainly live with it. Thanks for all you share with us so that we know we are not abnormal.
I started taking Lamictal about 3 months ago. At first, I was so anxious and nervous that I thought that I wouldn’t be able to take the medication. I read the side effects which did list anxiety as one of the side effects. I started with 25mg the usual beginning dosage and didn’t experience anxiety. It wasn’t until I got to 100mg before I felt this terrible anxiety. I was determined to continue to try the med. hoping the anxiety would subside. It didn’t, so I told my pdoc about this and he told me to try 75mg or 50mg in the am and 50mg at night. It worked or maybe the med took longer for it to work for me, not sure. Anyways, I decided to continue on the 50mg once daily and found that it worked well. No side effects so far. It really has helped with my depression. I have been fighting with bipolar for a long time. I also take Trileptal which calms me and lyrica for pain. I have found that lyrica has relieved my pain and also helps with sleep and OCD or maybe it is the lamictal that has helped. I haven’t experienced as many tics while on this med. Before taking this med, I have had tics and OCD symtoms for years. Don’t get me wrong I do experience OCD and tics at times but nothing like before. I hope that these meds. continue to work because I have been through so many meds. before finding the right combination. I would like to add that the tics you described are exactly the tics that I have experienced and thought that I was the only one that has experience this. So, thankyou Amy for sharing your story it really helps to know that someone else out there knows the feeling. It can be torture at times. This is the first time that I have read a blog where someone else out there has explained exactly what I have felt. It is so nice to know that I am not alone and I am not crazy. Sincerely yours and God Bless You for sharing. Sue
Yes you can report the side effects and I highly recommend you do so. Each pharmaceutical company has a departemnt that triages Adverse Events. They are required to document each call and the pertinent details. It is important that patients report the side effects or negative reactions so that companies become aware of a particular issue with their product. Also, most safety and efficacy studies are conducted on a limited amount of patients. Many times all side effects and reactions are not discovered until there is wide spread use of the product once it is liecensed and prescribed to patients.
Hi, my daughter has taken Lamictal for siezures for many years with no side effects. We had just increased her dose and she started developing tics and high anxiety . Her Neurologist said they are both side effects.Hope this helps
Wow, finally I have discovered I’m not alone in the tics I experience from time to time. Even though they’re infrequent the fact that they usually happen during social settings can be quite discomforting. Socializes is already tough enough when I’m feeling anxious. My tics usually feel like a burst of anxiety coming from the back of my head/neck area. My head then jerks slightly to the right. My doc said he didn’t know what that might be. More recently, I had face contortions or grimaces after a missed 500mg of my 1500mg daily dosage of Depakote. That may have decreased the Lamictal(100mg) levels in my blood causing this strange reaction. It really concerned me! Thanks for sharing. That really makes me feel better to know I’m not the only one.
I too have tics from Lamictal 100mg., I tend to pucker my lips and suck on my tongue. I hate it and my family always reminds me I’m doing it. Its so bad I have lines around my mouth like a smoker would have. I’m thinking of going off lamictal & see if it stops…
Wow, this is really enlightening! My 12 year old daughter has epilepsy and has been on Lamotrigine (the brand name in Canada) for about 2 years. It has provided good seizure control, but since that time we’ve also noticed “hand-flapping” and lip puckering (as described by the reader above). We thought she might be developing some autistic tendancies (she’s never been diagnosed as autistic, but has some developmental delays). The fact that this behaviour could be connected to Lamotrigine is very interesting…
Thanks everyone for sharing!
Im taking 800mg of lamictal a day for epilepsy, and Ive had a problem with my throat for the past 2 years (almost since Ive been on the medicine. Primarily continual clearing of my throat and a sensation of something stuck in the back of my throat. Ive seen tons of drs, checked me for all nasal and stomach issues, all to no avail. My last dr said it could be some type of tic, but I wasnt sure. Has anyone else heard of something like this? Any help or advice would be greatly appreciated!!! And thank you all for sharing your stories.
Hi Jon, this is a normal side effect of Lamictal. I’ve noticed a lot of side effects that affect the head area. Neck pain and twitches, itchy face, yawning, trouble breathing, trouble catching your breath. It’s a great drug (in terms of having to take meds)- and it usually has few side effects. 800 is a LOT of Lamictal. I take 700 and that is also high. These doses are not studied in terms of bipolar disorder. So these side effects are not well documented. I’ve been on it since 2005 and if I go off it, my depression is quick. I wish I could have stayed on a lower dose, but it stopped working. The 700 has helped for a few years. I don’t think I will go up with it. I would rather add something than risk going higher.
Another thing to get checked. An ear, nose and throat doctor can check for cysts on the thyroid. This doesn’t mean there is anything wrong with the thyroid- they are very common- but I often feel there is something stuck in my throat.
Spreading out your doses can help.
And finally, is it there all of the time? Or does it come and go? Or…. does it start when you take the meds.
Regular medicine rarely understands the side effects we go through- they are so odd! Who would think a medication could cause constant yawning!
Hope this helps!
Julie
Thanks for responding Julie. I was diagnosed 2 years ago with epilepsy after having seizures for 9 years, and so after going through a few different meds, Lamictal was the only one that helped and didnt kill me with side effects. I just happened to notice this one and thought it was strange.
Ive seen numerous ENT drs, and even a GI dr hoping to get answers,and they said nothing was wrong. So, this can be the only thing any of them can think of. But, I guess out of it all, it could always be worse! 🙂 And Ive had a lot of neck pain as well; I didnt know that was something that could be caused by the meds. It happens more after I get close to taking another dose, I guess my body expects it, and if I dont take it at the same time, it starts with that. I dont know.
But, like I said, it could be worse. Im so glad I found this medicine because it too has saved my life. I have cluster seizures, so when they start, they dont stop so easily. And Lamictal is the only one Ive found to work! 🙂
Thanks again Julie! I hope your side effects get better!
Jon
Wow. I’ve been plagued with a facial tic for as long as i can remember and never thought to attirbute it to lamical. As much as I’ve complained to my Dr. about my tics – he obviously never made the connection either! I only finally noticed because I didn’t take it for about 3 days and aside from the almost unbearable side effects, my facial tic decreased substantially. I was taking 400-2 in the morning and 2 at night but I’ve become aware that I need to change that dose in order to stop the tics. I have no idea, unfortunately, how to alter the dose so the tics stop. I’m assuming I must decrease it. I’m trying to cut it down to one pill a day instead of 2 – 200 mg instead of 4 to see what happens. If anyone has any advise, I would truly appreciate it.
Lamotrigine / Lamictal is the only drug I am taking
My daughter is 9 and has had seizures since she was 6. She just started taking lamictal a month ago and has started clearing her throat NONSTOP!! Its making everyone around her crazy could this be a tic?
Clearing the throat can be a tic. If it is, she currently has no control over it, even though it can be annoying to both her and anyone around her. Talk to her doctor about it and report it to the pharma company. Some of the tics may disappear as she continues to take the lamictal, but that is not always the case. Hope that helps. 🙂
I’m a 16 year old girl with Bipolar Disorder and Major Depressive Disorder. I’ve been taking Lamictal for about a year now. It’s been my miracle drug.
Paired with Effexir, it helps control my mood swings and let’s me feel normal. I’m so thankful.
My doctor had me taking up to 225 mg (not too much), but my “random feelings of sadness” became more frequent. I was lowered back down to 175 and now I feel like I can’t focus my eyes on any one thing and I noticed that I’ve been getting small facial tics. I don’t want anyone at school to see this so I decided to look it up and see what’s going on in order to stop it.
Other than this specific problem, I am completely happy with Lamictal. I definitely do not want to switch to a different medication.
I’ve been on Lamictal for about eight years for bipolar disorder. It has been overwhelming positive, with few side effects. I did recently notice a small tic in the lower lid of my left eye. I had the same problem when I tried welbutrin. It basically was a very wrong choice as it made me almost too manic to function. I did manage to stop smoking while I was on it, but started again when I stopped taking it. So far two doctors recommended adding depacote, while my last doctor recommended against it. Most the time its been a shot in the dark and I went through several medications before I found this one. My last visit I was having anxiety problems so he added a very small dose of clorazapam to take as needed, and it does seem to help. It usually takes missing two doses before I notice the change. I tried a once a day dose but the half life didn’t make it make sense.
I’m 44 and before medication cycled four to six times a year. Mostly I’m in remission and have one or two mild cycles which seem more like seasonal affective disorder than bipolar. My wife is an important part of my treatment. I would recommend reading “Loving Someone With Bipolar Disorder” because it made her life much easier and helped me with treatment beyond just medication. I also notice that MSG in all its forms affects me strongly and avoided it and processed foods in general.
My son has been taking lamictal for just over 6 months.he is 11 and was diagnosed with benign focal epilepsy at 8.He has been having some tics such as rolling his shoulders and pulling at his collar of his shirt and I’m trying to figure out if these are side effects from increasing his med or a new form of focal seizure. His doctor wants to increase his med but I’m concerned these will become worse and they did with increase in trilateral when he was on it.
God my tics are severe and very painful and the Lamictal is the cause. This sucks because it helps my depression. Even when I weaned off meds months later the tics were still there.
this is really interesting. i have had eye tics since i was a kid and finger tics from drinking coffee. i went on lamictal for bipolar and have not had an increase in tics.
who knows what is going on. i sure don’t.
but i haven’t noticed tics in my clients (i’m a psychologist) who are on lamictal.
i am not discounting those who have tics causes by lamictal. these drugs are all pretty weird, since they work on our brains.