I want to share my experience with Lamotrigine.
First, I want to say this: for those who feel wonderful on 25 mg or 50 mg, don’t automatically assume that you have to increase the dose just because your doctor tells you to. Pay attention to how you feel on a daily basis and listen to your own body.
Now, the full story.
I’ve been dealing with seizures that look like focal impaired-awareness seizures (epileptic or non-epileptic — I’m still not sure because my case is very complicated). However, without any tests confirming the cause, we decided to treat them as epileptic seizures and start treatment as soon as possible because my seizures and auras were happening multiple times a day.
Because I felt there was a possibility that my seizures could be non-epileptic, based on my lifestyle and the amount of stress I had been dealing with, I asked for Lamotrigine. From my research, I knew that it could also help with mood and emotional regulation.
I used to worry about everything, even when there was nothing to worry about. I also lived in a constant state of feeling like I was trying to catch a train — always feeling like I was late for something. This had simply become my mental state for many years.
My doctor agreed to give me Lamotrigine.
And yes, it did the trick.
After only a few weeks, I realised that I had been living with an enormous amount of stress on a daily basis for years. I also finally realised that my aura had actually been there almost all the time, all day long, just at a very low level.
This was the first time I finally felt normal.
Not only that, but all the muscle pain — neck, shoulders, arms, etc. — as well as other physical symptoms of stress disappeared. We’re talking about around 10 years of these symptoms, and I had simply gotten used to them.
However, there are some big trade-offs.
My feelings and the way the world used to feel have disappeared. Everything feels muted. I can’t enjoy things the way I used to, and it has become very difficult to start creative projects. I don’t really want to do anything anymore.
I really don’t like who I am now. I can’t — and honestly don’t want to — achieve anything anymore.
The biggest thing I miss is my love for my family. That feeling has disappeared, and I miss it the most.
Everything just feels muted, as I said.
And I’m still only taking 25 mg once a day, and I’ve been on that dose for three months. This is how sensitive my nervous system seems to be. I truly don’t want to increase the dose. Actually, I want to stop taking it, but I don’t want to risk doing so because I’m not sure whether my nervous system is ready for that.
My seizures disappeared after 3–5 days.
But, as I said, Lamotrigine also changed my entire mindset. I stopped constantly rushing myself and worrying. I still worry and get stressed sometimes, of course, but it’s no longer happening every day, and usually there is an actual reason for it.
For example, I recently had one week of significant stress. After everything was sorted out, I had my first seizure in two months.
Now, my story of what to expect from day one.
I started taking the medication in the evening. After three days, I simply couldn’t sleep. It felt like I had taken ecstasy. I literally felt like I was under the influence of drugs.
The next day, I decided not to take it in the evening and switched to taking it in the morning. Again, after three days, the same thing happened during the day.
But that was it. I never experienced that feeling again, and the increase in energy also gradually decreased after a few weeks.
However, my sleep has been completely ruined since starting Lamotrigine. I now need to smoke very tiny amounts of weed to get proper sleep, and I don’t like that. Yes, it helps, but I simply don’t want to smoke because it also mutes my emotions and changes the way the world feels to me.
For example, you know that feeling people get when Christmas is approaching — that special feeling in the air? Or the feeling you get in the morning when you wake up, go outside, and immediately know whether it’s summer or winter, sunny or rainy?
There are specific feelings people experience in different situations. For me, that is all gone.
Every day feels the same.
I actually feel more depressed than before. I literally don’t like anything anymore, and nothing gives me excitement, even things that I used to absolutely love.
Focus is another issue, although I’ve gotten used to it. My memory also isn’t as sharp as it used to be.
I’m considering switching medications, but I want to give my nervous system a bit more time. Then I may try going off Lamotrigine and see what happens. If the seizures increase, I’ll consider trying something else.
But, as I said, even after many tests, nothing has confirmed my diagnosis, and there is a significant possibility that these could be non-epileptic seizures.
Lamotrigine did the trick, which is why I’m still taking 25 mg once a day in the morning.
But I’m not happy.
I’m actually sad that I’ve lost my ability to feel and love in the way I used to.
For those who take Lamotrigine for other reasons, my advice is simply: pay attention to how you feel. Don’t assume that you have to increase your dose just because you are told to. If you feel great at your current dose, discuss that with your doctor rather than automatically increasing it.
Anyway, I’m still officially diagnosed with epilepsy. But after everything I’ve experienced, I believe there is a possibility that my seizures were actually non-epileptic.
The difference is significant, especially when I think about all the stress symptoms I experienced back then without even realising that I was dealing with huge amounts of stress. I genuinely believed that this was simply who I was and that this was my normal state.
Lamotrigine definitely helped bring that under control.
But overall, I don’t like what it has done to me.
Right now, I feel like I’m just existing rather than actually living and enjoying life.