I’ve always talked about the good parts of Trikafta (it’s literally saving my life) and I’m always going to be grateful for that, but I have finally begun to investigate the growing numbers of neurological issues I’m having on it, and it turns out I’m not alone.
It started with arm and leg weakness when I began taking it, not even days later. Six months in I had sudden vasovagal syncope episodes, acne, brain fog, alternating fatigue and insomnia. Recent issues with vertigo, considerably with head movement or visual action (watching a movie or playing a game.) I will feel like I’m falling over and spinning when I barely turn or tilt my head but it’s entirely random.
I gained weight without trying (a good thing for me), then nothing would stay in my body, now it seems like everything just sits in my body and doesn’t move - could be attributed to Covid years ago? But I was negative and didn’t have the respiratory symptoms my family did. My weight plummeted back down a bit and plateaud but I’m not getting enough calories because it’s like my body just shuts off a few hours into the digestive process. I’ve tried everything to get my gi system back to normal and my body quickly gets used to it and it stops working again.
I had increased anxiety from the beginning that is mostly managed, but I have issues with anger that I’ve never had before Trikafta (this has been a beginning side effect as well that hasn’t gone away.) I have random bouts of nausea, especially in the morning. Liver and gallbladder area pain (always normal test results.) I can’t focus on the most basic tasks, it’s like my brain and body are disconnected; I can’t comprehend with my brain and body at the same time if that makes sense. My mind never settles down - seems like it’s stuck in fight or flight and there’s so many thoughts coming in at once which leads to overstimulation. I end up feeling dumb. Most recently one of the scarier side effects is memory loss. I keep forgetting what I’m doing, so if it’s not written down I won’t remember. I’ll walk to random rooms forgetting why I’m there, I’ll struggle to come up with words or notice a very rare slurred word. My brain will tell me I’m hungry but then I can’t make the connection to literally move my body and get out of bed to get food, so I just get frustrated because I know I need something but I don’t know how to get it. It sounds ridiculous, I know, but it’s real. I’ve been telling my friend for a while now that I feel like my entire body is malfunctioning and one of these days it’ll just implode or explode but I don’t know how.
I’ve also begun to have irregular periods that cause such intense pain I am nauseous and can’t sleep, or absence altogether with sudden hot flashes, migraines, and night sweats. It’s making me wonder what I can do to reverse all of these health problems while maintaining or improving my lung health. I feel healthy lung wise but I want to feel healthy in the rest of my body, and feel like myself again. I miss who I was before I had all of these issues. I am seeing everywhere on social media that many others are having similar side effects, but many of these have not been officially reported to healthcare professionals, or Vertex, so it’s unlikely we will see a change until more people speak up.
There are many reasons why pharmaceutical drugs are important and powerful, and I am a big advocate on speaking up for yourself and getting help for what you need. With taking Trikafta though, I’ve realized a lot of people are glossing over the side effects or dismissing them all together, particularly providers and even Vertex. It’s important to recognize all of the effects of pharmaceutical drugs on people and our environment, but more importantly I’ve begun to focus on natural health. I’m doing my best to combat the effects by getting my body as naturally healthy as possible with proper sleep, 64-72 oz of water per day, daily exercise, healthier food, positive rewiring psychologically with affirmations, meditation, journaling (anything really) just to find something that sticks, hobbies to try to relax. I appreciate a clean environment with less clutter and noise so I can focus a little more and not feel as overstimulated.
It’s a shame that our soil and water is heavily contaminated with pharmaceuticals, chemicals, and pesticides, and even more so that our food (even healthy, whole foods) are so full of chemicals, dyes, and compounds that are altering our bodies and minds, as well as affecting our children and their growth and development. I’m seeing more and more about kids entering puberty early, or having health problems and it makes me wonder how we can reverse all these negative effects. In addition, I marvel and worry about excessive screen consumption and the future of socializing in relationships, as well as the absence of nature in our kids’ lives. I know it has personally affected me and is not helping, but I do believe there are positives too. For me, it’s all about moderation.
I want to know… What are your current thoughts on the U.S. healthcare system and mental health? What do you think of our food system and the evolution of technology, increased screen time, and AI? What are you doing to keep you and your family healthy?
Please let me know in the comments!
If you are a Trikafta user, please let me know of your experience taking it (positive or negative) so we can learn more about how it is affecting everyone. You can take my Trikafta/Kaftrio Survey (Hosted on Google Forms) Here: https://forms.gle/zu76Vc2ZUzWCf6Un7
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