Women on Lamictal (Lamotrigine) Warning: What Your Doctors May Not Know

This June, I went to Kauai hoping my brain would finally get a break. Instead, I woke up and could barely walk straight. My balance was gone. The room seemed to move under me. I fell, got hurt, and had moments where my spatial awareness felt so off that it scared me.

This episode is about the interaction between estrogen and Lamictal, also known as lamotrigine. Over 2 million people currently take Lamictal in the US.

But for some providers, they are not aware how changes in estrogen — from birth control, perimenopause, hormone replacement therapy, patches, pills, gels, or dose changes — can affect lamotrigine levels. Lamotrigine toxicity can look like dizziness, clumsiness, confusion, drowsiness, headaches, poor coordination, balance problems, and unsteady walking. It can be easy to dismiss those symptoms as stress, anxiety, brain fog and menopause symptoms in general.

My Lamictal level had risen from 8.9 to 13.8. Still technically within the lab’s reference range, but much higher for my body.

This is not medical advice. It is a story about what can happen when hormones and psychiatric medication intersect — and why women on Lamictal deserve clearer warnings, better monitoring, and doctors who know what to ask. Please take the first step by talking to both your OBGYN and your Psychiatrist/Med provider. 

Thank you for listening.

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Transcript

[00:00:00] Welcome to Bipolar She. I'm your host, Janine Noel. The content of this show may include suicide or suicidal ideation. If you're ever in need of immediate support, please dial 988, a suicide and crisis lifeline.

[00:00:22] All right. So I've been away from the podcast for several weeks now actually, but it's because of a [00:00:30] very bipolar reason that I wasn't able to get some episodes out. And I think it's actually more important for me to share what was going on behind the scenes, because this could really apply to a lot of women, and I don't know if many women or their providers fully understand what I'm going to talk about.

[00:00:52] So in June, I went to Kauai with my family, and I love landing at the Lihue Airport. That [00:01:00] air makes me feel like any depression, intrusive thinking, paranoia, or just normal life pressure and worries are just gone. But the next morning, I woke up and I put one foot down on the tile, and it felt like I was trying to find my sea legs.

[00:01:17] As I stood, I knew where I was, but my body hit the dresser and the floor rocked, and I was groping for the door that felt out of reach, and I fought against this imbalance and [00:01:30] basically just fell back in bed. Twenty minutes later, I tried it again and I made it across the hall to the bathroom. So what was happening?

[00:01:39] When we left to explore Poipu Beach, there was this short stone ledge around the condo lawn. It was very low and I stepped up. It would be easy to jump off of, but I fell to my hands and my knees and got a manageable gash on my right knee. I had started hormone replacement [00:02:00] therapy or HRT about three and a half months before, estrogen, progesterone, and testosterone if needed.

[00:02:07] And my current provider had prescribed estrogen gel and encouraged me to sort of experiment to see what dose of the gel would help me feel less irritable and have less brain fog. I found that my body only liked a low dose of estrogen and anything higher made me feel bloated and my breasts felt really tender.[00:02:30] 

[00:02:30] After a day or two of this unsteadiness in Hawaii, I was frustrated. I didn't even have enough balance to put on my swim fins and get into the ocean. I was able to swim. . I had briefly talked to my psychiatrist about this current attempt on hormone replacement, but I felt like we just talked about how it might impact my mood, and we weren't talking about the estrogen and [00:03:00] Lamictal interplay that is actually happening.

[00:03:03] By the time I reached Kauai, my Lamictal level, which is measured by a blood test, was higher, and it started producing these neurological side effects. Dizziness, poor coordination, unsteady walking, clumsiness, confusion, drowsiness. I was also having terrible headaches at the time, and these headaches landed me in urgent care right before this trip.

[00:03:27] And I'm just seeing this now [00:03:30] in this list of side effects that headache is there. So my story is one story. This is a medical anecdote, but the science behind Lamictal and estrogen, that interplay, is real. There are several good studies, but most of them focus on the impact of estrogen on Lamictal. So when estrogen is started and when estrogen is maintained rather than when estrogen is lowered.

[00:03:58] So they [00:04:00] did mention in there higher Lamictal levels can cause this toxicity. And it was tough though, because on a trip I didn't know if it had to do with taking my medication three hours different from home, if my electrolytes were off, or even could this be my lithium level? I didn't know what the hell was going on.

[00:04:23] The next day we walked down to the edge of Shipwreck Beach and began a rocky but pretty easy climb [00:04:30] swiftly up to a cliff with a deadly drop off just a few yards from my feet. When someone gestured to me to stay closer in, I realized for the first time just how high up we'd gone. I did not know there was a ledge, a rocky cliff a few steps away.

[00:04:46] I had no perception of space and what was around me, and thank God, thank God, thank God someone, you know, waved me over. So a neurologic side effect can be deadly [00:05:00] The night before we came home, I was watching the turtles where they come up to the sand and they rest before they head out for another day of body surfing.

[00:05:09] When I walked up the beach, I tripped not seeing the outline of a dense sand-made step, and I stumbled again and my left ribs took the fall. My ribs have been bruised and aching for four weeks, and my neck is still tight. So I made an appointment with my [00:05:30] psychiatrist that very first day I was home from Kauai.

[00:05:33] He did a Lamictal lab test, and then it took several days to get it back. With Lamictal, there is no distinct measurable level that is effective and safe for everyone. So there's really this range or a reference interval where your level can fall. So my Lamictal level had gone from eight point nine to thirteen point eight, and that's a fifty-five percent increase, and [00:06:00] that's a big change for a body.

[00:06:01] So this episode is really for women. Take this information. And if you're taking the birth control pill or you're taking estrogen midlife and beyond, and you have a psychiatrist and OBGYN, you need to tell them both about either your Lamictal or your estrogen, especially if changes are being made.

[00:06:25] And so this is also another tricky spot. If you're just switching from [00:06:30] one form of estrogen to the other and they're technically the same strength, like a pill to a gel to a cream or a patch, your body is going to metabolize it all differently. So I don't even know if Lamictal toxicity and this estrogen interplay is even introduced in med school.

[00:06:49] It seems like providers are not aware of it. So we need more studies on women and mood stabilizers and bipolar disorder and [00:07:00] so many other mental health areas. And our experience is so much more complex. Our studies will be expensive and complex. But my little anecdote is not enough here. Let's keep going with them and telling our stories, but hopefully there will be more funding and research for women.

[00:07:23] We know it is weak and people are speaking up So I fell on June 6th and today is [00:07:30] July 6th. I've just decreased my Lamictal again to find a new level to get me out of this lingering brain fog that I've had all month. So this is how I lose months. This, this is the cost of mental illness. It's just not only crisis times of depression or mania or hospitalizations.

[00:07:50] This is definitely what goes on behind closed doors. It's these medication kinda shakeups that are really impactful and [00:08:00] really kinda steal your brain from you. I had that recent lithium experience that just made me suddenly depressed, and it takes weeks to really repair your brain. It reminds me of a concussion where you should be off screens and you need a lot of sleep.

[00:08:16] It's similar. It feels like it's difficult to even compose an email, and at that time, making a podcast feels impossible. So these are lost, tired, [00:08:30] disoriented days where you're not well or you can say you're sick or you're going through a med change. And these med changes, this one almost landed me over a cliff.

[00:08:43] Thank you for listening. Over two million people take Lamictal for mental illness. That means there are so, so many women out there that may have providers that do not bring up the interaction and side effects with estrogen. Women are simply understudied [00:09:00] in medicine. I hope these stories somehow make a difference.

[00:09:03] I hope the science improves. And while we hope for change, Bipolar She really needs your support. My stories and my guests' stories have the possibility of making a difference if we keep this show alive. A micro donation to buymeacoffee.com keeps me and my editor afloat. Please visit buymeacoffee.com/bipolarshe.

[00:09:29] And [00:09:30] as always, thank you for your support