Trip report: Lamotrigine, a drug to treat depersonalization – Part 2: The experience

Previously: Part 1: Preamble

Disclaimer: I am not a doctor, and this is not medical advice. Do not take any medication without appropriate medical supervision.


Don’t try this at home

I’ve already been on an SSRI, Lexapro, for the past year, which has been spectacularly successful in insulating me both from my depression and from the stresses that come with living in the United States right now. But unlike the compounds tried by Morris, lamotrigine is not a medication that can be taken once with immediate effect. The dosage must be titrated up over a period of weeks, with close monitoring of any side effects, which can be potentially fatal. It carries a black box warning about Stevens-Johnson syndrome, a life-threatening skin reaction that you should not Google unless you have a strong stomach. There’s also a long list of possible drug interactions. Lamotrigine is absolutely not something you should take without medical supervision, and I only tried this after consulting with a practicing psychiatrist.

That said, I was able to take it without experiencing serious side effects, and my experience with lamotrigine turned out to be a very interesting exploration of the many dimensions of depersonalization that had haunted my life for decades. I wanted to understand depersonalization better, both as a general phenomenon and as something that affected me so deeply, and lamotrigine did give me that.


Titrating up

During the first couple days, my thoughts feel almost “tingly”, a bit like rolling a Koosh ball around in your hands. It’s not unpleasant or distracting. I’m feeling like I’ve got myself together pretty well, and I face a six-hour car ride to St. Augustine with two bored kids without any issue. Having a picnic and visiting the Castillo de San Marcos fort is a pleasant experience even in 39-degree “bomb cyclone” weather, and we stop to pick up citrus and souvenirs on the way back.

When I do feel a bit prickly, it’s still hard to hold on to bad feelings for long, and it’s easy to get it under control. This is a good thing. I cook dinner for everyone effortlessly, without any fogginess, disorganization or disorientation. It’s like I don’t even have to think very hard about it. Throughout the first week, I’m just in a good mood. I notice that shades of blue seem to be slightly more vivid, not in terms of visual perception, but as if they have more substance to them.


The real test

After nine days, I stopped my hormones entirely.

This is broadly a very bad idea – the last time I was unable to access HRT, I experienced a notable return of prominent depersonalization symptoms within days. That was hellish: my mind wouldn’t stop narrating everything to itself at all time, everything I did felt robotic, and the world just flattened out:

Heather takes me out to the food court and I can’t stop quoting movies at her. What the hell is going on? The entirety of my sensory input is like flat noise, everything amped up to the maximum power spectrum value, becoming a constant static in the foreground of my brain. None of it feels like it should – the people around us, the books at the store, the taste of my coffee, all of it is like the partially eclipsed sun, beating down on my face, blinding, utterly devoid of heat.

None of this got any better until I had my hormones again. HRT turns depersonalization on and off like a switch for me, and if lamotrigine with an SSRI can do anything for that, this is how I’ll find out.

Certain songs begin to get stuck in my head for the first couple of days, as if playing in the back of my mind even as I’m speaking or doing anything else. “Donatella” by Lady Gaga, “Gimmie Love” by Carly Rae Jepsen, “Funplex” by the B-52s – even “Someone Ate the Baby” by Shel Silverstein, which I hadn’t even read since I was a kid. But this doesn’t disruptively force itself into the forefront of my consciousness, and it’s definitely not as bad as it would usually be off hormones. I listen to other music when I feel the need to tune it out, and I make a point to step out more often and get as much sunlight as I can.

I’m being a bit more patient than usual with bad-faith trolls on Twitter. There’s an energetic feeling – I’m engaged and having plenty of conversations, and enjoying it. In the afternoon, I look over at the door we keep propped open with a shoe so our cats can come in and out freely, and it keeps looking like it’s opening even as it’s staying in place, kind of like the song from ascending the staircase in Super Mario 64. But it passes quickly. Three days into being off hormones, I’m still having no prominent depersonalization symptoms. My moods are entirely fine, even if something feels a bit “off” in a way I can’t put my finger on. There’s no sense of feeling robotic or running my entire life on manual – I’m still just as spontaneous as ever, and having normal emotional reactions without having to think about it. Normally I’d be an utter mess by this time, but so far it doesn’t feel anything like the other times when I’ve been off HRT.


Going out

After four days off HRT, Heather and I go to our local Scottish Highland Games, a yearly event that we always look forward to. If anything would set off my depersonalization and derealization, this would be it: a huge and loud space full of thousands of strangers, on a cold, gray, blustery day. As a kid, this was the kind of place where I would typically find myself dissociating – dragged along by my family, I would tune out the entire time until it was over, or my senses would become so overstimulated that I couldn’t bear it.

I’m still experiencing songs getting stuck in my head, but it seems to be at its worst in the morning before my brain has fully woken up. This faded almost immediately as soon as we got to the Highland Games – it tends to go away if something else can keep me sufficiently occupied. We wander through the rock-tossing events, the booths for each of the clans, the food stands and petting zoo, and… I’m having fun. Not stuck in my head, not feeling removed from everything around me – I’m actually happy! There was so much to do there and so many shops to explore, and it was all just really cool. Even when paying close attention to any possible dissociative symptoms, they’re not there at all. Somehow, everything is normal.

By the end of the night, I’ve had a very large pitcher of ale, and I run down to the front of the stage to dance frenetically with the crowd to Albannach’s bagpipe and didgeridoo music. I had such a great time, only stopping when I was finally out of breath. Getting drunk was a bit of a mistake, and I have a terrible headache later that night – I really can’t handle my alcohol, and it’s not my substance of choice. But after drinking lots of water and a good night’s sleep, I feel fine.

For the past few days, I feel like I’ve been mixing up or dropping words a lot when talking, but I’m not sure if this is something different or if it’s just because I’m talking very fast. I’m also having strange dreams that take on an unpleasant tone: visceral dreams, of weird things happening to my body, of entire expansive worlds so much bigger and more vivid than my usual dreams. Every other night, I seem to wake up in some kind of anxiety for no apparent reason, and I often have to step outside to collect myself before going back to sleep.

Some part of me still feels like something is different, something is missing. Maybe I’ll be able to tell when I start HRT again. But on the whole, I feel so normal that I want to see how long I can keep this up – I’d like to try for at least a week off hormones, and it doesn’t seem like it’ll even be difficult. We watch “You Get Me” on Netflix, and the teenage romance is painfully inane, but the visual aesthetic is oddly appealing to me. It seems dreamlike, but not in the bad way that makes you feel distanced from the world – it’s inviting and pleasant. The expansive environments, the bright colors, is it unreal? Hyperreal?


The thin shell

After 11 days off hormones, the world feels a bit less immediate and less intense, but not in a way that’s actively troubling to me. I start to feel cognitively slowed or disrupted, like a kind of brain fog. I forget to do simple things like take my wallet to the store or put the garage door back down when going inside. I struggle to remember all the items to get at the grocery, about 20 in total, although I only forget one. Normally this would be a clear and orderly list in my head that’s immediately available as a whole without thinking about it. Now it feels like I have to make a conscious effort to recall the next thing, and several times I pass by items that I only later remember to get. This is distracting and I don’t like it – it’s not an effect I’d be comfortable putting up with for a longer length of time. I start to think that I want to get back on my hormones as soon as possible.

In sufferers of depersonalization, symptoms can become more prominent in the form of sudden attacks. Later that night, I step outside to get some air, and the thought enters my mind that the trees, cars, and houses on our street could just be particularly elaborate Lego pieces. The clouds in the night sky could easily pass for a simple rendering in Blender. Isn’t at least half of what we see practically a hallucination that’s filled in by our brain without us even noticing? If all these things were just renderings, it seems like it would be easy to take advantage of that.

I can almost envision everything on our street coming apart piece by piece like an exploded technical diagram. The asphalt, the curb, the patches of grass, all of them could just lift into the air and drift apart, nothing but thin surfaces, almost like abstractions or mere representations. If I were to take a shovel and start digging a hole in the road, it would just be an indentation in that surface, pushing it to extend a bit in one direction or another – but underneath it, nothing. The houses along the street are just outgrowths of the surface, a sort of puckering in it, like a ball on a rubber sheet to demonstrate how gravity is the curvature of spacetime.

I tell Penny about this – she’s a computer animator, and says she experiences something similar when watching movies, seeing all the CGI effects as just flat and artificial creations overlaid on a background. The difference is that I’m seeing this when I look at the real world. It’s an incredibly uneasy thought, but I can’t shake it. I start to realize what’s been missing in my world for the past week. It feels like there could be an infinite chasm behind the surface of everything – the idea of objects having solidity and depth is unconvincing, and it just doesn’t register for me. There’s a sense of standing at some cliffside, with the entire world nothing but a thin and fragile shell between me and the endless void. Perceiving the world felt like walking on ice that could crack at any moment.

This isn’t something I want to continue to experience, and I go back on my hormones immediately. The strange sensations subside within a couple days.


Potential use cases for lamotrigine

There’s a tendency among many cis people to view transitioning as regrettable, a kind of last resort meant to stave off something worse, potentially acceptable only if there are no other options, and even then something to be avoided if possible. When I’ve discussed these experiences with trans people, they’ve often correctly raised the concern that treatment with lamotrigine might be seen in this light and construed as some kind of viable substitute for transitioning. As someone who has experienced the difference: This is not a substitute for transitioning.

When on hormones, my depersonalization and derealization stay at around a 0 or 1 out of 10, almost always unnoticeable and typically only worsening in times of stress or in unfamiliar environments. Without hormones, my symptoms are a bleak and deafening 9 or 10 that swallows up anything that matters in this world. On lamotrigine without hormones, this held steady at around a 3 or 4. Some of the more prominent symptoms were kept in check most of the time, but it was still disconcerting and very far from optimal, with intermittent attacks where it would become suddenly worse. For me, this is not remotely an equal to estrogen.

Furthermore, even as lamotrigine held off a large part of my depersonalization, it was not a substitute for the beneficial effects of estrogen on anxiety and mood overall. I began to feel “on edge” and my sleep was repeatedly disrupted by panic attacks of no clear origin. Finally, it’s certainly not a substitute for HRT in treating gender dysphoria itself: my skin felt rougher, I had outbreaks of pimples, and my body odor took on a scent that some trans women have artfully termed “boy stink”. Absolutely none of this is something I would be willing to put up with in the long term.

There are also plenty of possible cases where lamotrigine could be used for trans people and would not conflict with or invalidate affirming treatment at all:

  • Trans people who don’t want to take HRT but still seek relief from their depersonalization symptoms
  • Trans people who continue to experience prominent symptoms of depersonalization while on HRT
  • Trans people who have to go off their hormones in order to conceive or bank sperm
  • Trans people who can’t take HRT or have had to discontinue their HRT for medical reasons
  • Trans people who are required to discontinue HRT for several weeks prior to gender-affirming surgeries
  • Trans people who lack access to prescribers who will provide HRT
  • Trans people who live in jurisdictions where being trans is unsafe or illegal and affirming care is unavailable

As for me, I feel confident in saying that if this treatment had been available to me in the many years before I discovered my gender and chose to transition, I could have been spared a great deal of the suffering that deeply traumatized me and still defines my life. If there is a viable treatment that can help to ameliorate this unique pain that many of us are all too familiar with, that’s another arrow in our quiver. And I think we deserve to have as many as possible.

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About Zinnia Jones

My work focuses on insights to be found across transgender sociology, public health, psychiatry, history of medicine, cognitive science, the social processes of science, transgender feminism, and human rights, taking an analytic approach that intersects these many perspectives and is guided by the lived experiences of transgender people. I live in Orlando with my family, and work mainly in technical writing.
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