[Amy Today]

I searched the forum for answers to my question so as to avoid repeat posting but didn't find anything.

I have Bipolar 2 and PTSD. I have been on Lamictal for 5 years. 2 years ago my dose increased from 150mg to 225mg. Within the last several months I have had some issues and am wondering if they are Lamictal related. Lamictal is the only medication I am on.

I had my Lamictal level checked a few months ago and I'm not sure how it's measured but my result was 11 and 15 is considered toxic, so I was within range.

The issues I'm having are:

Balance. I can literally be standing still and get wobbly.

Twitching: Just sitting still my leg will twitch or my arm. Not spastically, but sudden. Some days more frequent than others.

Verbal. Sometimes when I'm talking I can't find the word I'm looking for. I get stuck and usually end up picking another word that is similar but not quite right.

Written. Within just the last few months my typing has deteriorated in that I often skip words altogether or choose the wrong word such as using "threw" when I meant "through" or "what" instead of "went" or "you're" instead of "your" I proofread it and still miss it. This one has me especially concerned because I have a degree in English, am a creative writer, email and instant message at my job all day long. I'm "that person" who used to wince at grammatical errors and now I'm "that person" making them all the time. Clearly that's not normal.

I made an appointment with a neurologist but they can't get me in until January. In the meantime, I have Googled myself into a brain tumor, so I thought I would come here to see if others have had similar experiences on Lamictal.

Has anyone experienced any of these issues? I greatly appreciate any feedback.

[bpcyclist]

Hey, Amy. So, that is not a huge dose. When did these symptoms first start? How is your vision? Anything weird?

[imaginethat]

I'm on 250mg of Lamictal and have the same exact symptoms. It's awful. Knowing what I want to say but the word never comes. Stumbling around. Writing one word but meaning another. I've decided that the side effects could be worse. At least Lamictal doesn't cause the weight gain of some other mood stabilizers. That's my biggest issue because I gained SOOOO much weight on Seroquel.

[Amy Today]

Hi bpcyclist, thank you for responding. The balance thing has been an issue since I started for the most part. It has just gotten worse within the last year. The twitching was happening frequently near the beginning of the year, stopped for about 6 months, and just started again. The verbal issue started back in April/May and the typing issue started about 2 months ago.

I started working from home back in March due to Covid and I'm in my late 40s, so I've just been striking it up to working from home and getting older. But it seems pretty abnormal.

Worth mentioning, I am sensitive to medications so I thought it might be my Lamictal level being too high, but the blood work didn't show that to be the case.

[Amy Today]

Originally Posted by imaginethat

I'm on 250mg of Lamictal and have the same exact symptoms. It's awful. Knowing what I want to say but the word never comes. Stumbling around. Writing one word but meaning another. I've decided that the side effects could be worse. At least Lamictal doesn't cause the weight gain of some other mood stabilizers. That's my biggest issue because I gained SOOOO much weight on Seroquel.

Hi imaginethat, thank you for responding and that helps me a lot! That's the thing...I can live with the side effects because Lamictal is extremely effective for me. But I have myself in a bit of a tizzy because when I read about side effects it seems like people just have them from the beginning, whereas these verbal/written issues and twitching came on after years on it and kind of suddenly. It has been very difficult to research it.

[*Beth*]

Yes, I have all the issues you've listed. I'm on 350mg of Lamictal.

[FluffyDinosaur]

For what it's worth, the cognitive issues such as verbal and writing problems (and probably some of the other issues) don't necessarily have to be med-related. I have many of the same issues but I attribute them to long-term severe depression and derealization. Depression can cause a wide range of very intense and disorienting cognitive and physical issues, including dizziness and extreme fatigue. I was on various meds, including Lamictal, but none of them for more than a few months. Even now that I'm on no meds, I still have these issues, and looking back in my mood charts I can see I had much the same issues before I ever started meds. I'm not saying your issues aren't med related or suggesting that you're depressed. I only mean to say that meds aren't the only possible cause to consider, and it can be really tough differentiating between med side effects and bipolar symptoms sometimes.

[fern46]

Originally Posted by Amy Today

Hi bpcyclist, thank you for responding. The balance thing has been an issue since I started for the most part. It has just gotten worse within the last year. The twitching was happening frequently near the beginning of the year, stopped for about 6 months, and just started again. The verbal issue started back in April/May and the typing issue started about 2 months ago.

I started working from home back in March due to Covid and I'm in my late 40s, so I've just been striking it up to working from home and getting older. But it seems pretty abnormal.

Worth mentioning, I am sensitive to medications so I thought it might be my Lamictal level being too high, but the blood work didn't show that to be the case.

If you're sensitive to meds, perhaps an 11 is too high for you. The ranges are based on averages, but we're all different. You have a list of symptoms that are concerning. I know you said you're planning to see a neurologist. Did he prescribe the med? Do you have a pdoc? If so, I would contact them as well.

I am also med sensitive. A tiny dose of meds for me is like a bulldozer running me over and I still get concerning side effects. Others can take five times as much and be fine.

[Scooter9]

I was on lamictal for 4 years at 300mg and had similar issues that you did with respect to language and typing.

My doctors at the time said my symptoms are related to the depression I'm experiencing, which is my main problem. I thought they were wrong.

I had to stop lamictal suddenly due to a bad reaction and I'm on different meds now. And guess what, I still have the same problems. They're not as bad as before but they're still present. And I'm still depressed.

I cope by practicing words through writing and I have a grammar checker installed on my computer. The grammar checker catches the mistakes you mentioned and I take note when it does to try to learn about my mistakes.

Things are slowly improving. I noticed that my writing is getting better faster than my speaking is, but I do happen to write a lot more than I speak.

I've been off lamictal for 3 years now.

[Soupe du jour]

I never had any balance issues on Lamictal, even on as much as 300 mg. I specifically remember that because I took ballroom dance classes then, and had no problems. I did have some mild cognitive impairment on that dose. That impairment did include trouble remembering words. From my years reading others' comments on Lamictal, the cognitive impairment is not unusual.

I suppose balance issues are not unbelievable as a Lamictal side effect. I take high dose carbamazepine ER (1,200 mg) another anticonvulsant moodstabilizer, and am 95% sure it makes me very clumsy and perhaps a bit off balance. My psychiatrist has acknowledged that carbamazepine can do that. I do also still take a small dose of Lamictal (100 mg), but it does not cause cognitive impairment for me at that dose.

[sarahsweets]

I dont know how long you have been on lamictal or when you last had a dose change but here is something I found.

Lamotrigine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
loss of balance or coordination
double vision
blurred vision
uncontrollable movements of the eyes
difficulty thinking or concentrating
difficulty speaking
headache
drowsiness
dizziness
diarrhea
constipation
loss of appetite
weight loss
heartburn
nausea
vomiting
dry mouth
stomach, back, or joint pain
missed or painful menstrual periods
swelling, itching, or irritation of the vagina
uncontrollable shaking of a part of the body

[Amy Today]

FluffyDinosaur, thank you! I haven't been depressed, but maybe my PTSD may be interfering? I went through a really bad manic episode two years ago that was extremely triggering, which is why they upped my dose. So the constant intrusive thoughts would probably make cognitive functioning challenging for anyone? I think it's the sudden onset that concerns me most, because it's not like the medication/PTSD is new. But maybe it's just taking its toll?

[FluffyDinosaur]

Originally Posted by Amy Today

FluffyDinosaur, thank you! I haven't been depressed, but maybe my PTSD may be interfering? I went through a really bad manic episode two years ago that was extremely triggering, which is why they upped my dose. So the constant intrusive thoughts would probably make cognitive functioning challenging for anyone? I think it's the sudden onset that concerns me most, because it's not like the medication/PTSD is new. But maybe it's just taking its toll?

Yes, I think they would. And in my experience things like depression and PTSD really can take a significant toll over time. I definitely think it's worth considering that that might be a (major) contributing factor to the symptoms you describe.

[Bipolarchic14]

I took Lamictal for eight years 300 mg a day I did not have an issue with writing or twitching. My balance the last year I was taking it was absolutely horrid as a matter fact when they hospitalized me last summer they babbled something about my balance issue. Once I went off Lamictal my balance improved a lot.

[Amy Today]

I just wanted to thank everyone for taking the time to respond to me. Based on the helpful things you all said, I am relieved to know that my symptoms are probably Lamictal/PTSD related. For a while I have thought that my dose was too high due to my sensitivity to medications. The frustration is when I tell any doctors that they tell me my levels are normal and my dose isn't that high. But I think if it persists I am going to cut my dose back slowly a smidge at a time to see if some of it resolves without compromising the benefits. Thanks again everyone!

[Fuzzybear]

Thanks for sharing about this. I have not tried this med.
My best to you

[BipolaRNurse]

I've been on Lamictal for almost 9 years, and really only noticed the balance, memory and speaking/writing issues when my dose hit 300 mg/day. Now I'm on a whopping 500 mg and it's really dicey. But it does a good job as a mood stabilizer, and anything else would probably have the same side effects anyway so I just live with it.

[Kookey]

Lamactil was poison for me, went back to lamotrigine and so much better. Life is worth living again