Among the other amazing side effects I am experiencing on Tegretol (carbamazepine), such as personal earthquakes, difficulty with words, and an extra helping of fatigue, I have also put on weight.
10kg of weight to be precise, in less than 5 weeks.
I’d put on weight last year, and at the start of this year when there were three birthday cakes in a week and then two the next week at work (I can’t say no to free cake, it’s a great weakness of mine). At the start of university I was up at about 72kg. 5 weeks after starting Tegretol, I was up at 83kg.
I have ever been the human who has been able to eat whatever she wanted and maintained a figure that had occasional family friends ask if I was anorexic. My response was always ‘you haven’t seen me at dinner, clearly’. This neat trick began to fade away during my late twenties, along with my ability to pack away food, and I maintained a happy 58-60kg by simply eating normally.
I went on a work experience placement to a sheep farm for three weeks. While I was there I worked from 8am to 4pm in a physically demanding job, acting as a sheep dog, walking a three hour hike through bush on a proper off-the-beaten-track style track, hauling sheep fleece around while they were shorn, and generally having the time of my life. In those short three weeks I toned up like nothing on earth. I slendered down, I had guns to die for, and I was eating double what I’d normally eat to maintain the appropriate energy levels.
I don’t actually need to do a lot of exercise for my metabolism to go OH OKAY and pick up speed.
Until Tegretol.
I’m stable at 83kg. I haven’t gotten heavier. But despite the exercise I’m now putting in, I also haven’t gotten lighter. I haven’t changed my caloric intake in any way, I haven’t changed my eating pattern, I haven’t changed anything except added more exercise, and I am 83kg.
The weight is predominantly on my stomach. Every bit of my front abdomen, from below my breasts down to my undies line, is extended in a bulge. This is not a normal weight distribution, and this is not a weight distribution I am happy with.
I’ve done a bit of looking around – there was one study on people who were taking Tegretol and gained weight (I think it was averaging around 15kg) and they only lost the weight when they stopped taking Tegretol – something that is certainly not an option for me right now. There have been one or two people on forums who have claimed to have lost weight while on Tegretol by going extremist vegan for a couple of years – also not an option for me at this point in time. There have been suggestions of doing the ketogenic diet – another non option at this point in time, and should be done with extreme caution by someone who is on Tegretol, as carbamazepine is metabolised by the liver, and the ketogenic diet puts extreme pressure on the liver – and doing a paleo diet.
For now I will maintain my breakfasts and dinners as is and change my lunches while incorporating more exercise into my routine. Once my waterproof sneakers arrive I’ll be able to properly jog around at the paddocks as well (yay aerobic exercise). My goal is to be 80kg by the time I am next on surgery!
Very new to TN episodes and newly diagnosed. I have eaten next to nothing and I too am experiencing weight gain as I am acutely aware of my weight, while on Tegretol. I am very much enjoying your well written, honest depiction of this disease. Thank you.
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Oh dude welcome to one of the worst clubs you could possibly have joined, you have my utmost sympathies!
I became acutely aware of my weight once I came out of the Tegretol-induced stupor and immediately began looking into how it does it – there’s still no scientific consensus, other than regardless of what you eat, you’re gonna put on 15-20kg (on average!!!). For now, my biggest advice to you is eat well, eat properly, feed your body – because you’re going to need all your energy to manage the pain. The weight loss you can deal with once you’ve sorted out your new life.
I’m glad you’re enjoying this, and I really hope you find some comfort or good advice in this. If you ever need to talk – ask questions, rant, grizzle, or otherwise just whinge about this truly spectacularly shitty disease, I am 100% here for you to do so ❤
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