Welcome to POTS Stories!
This is a safe space dedicated to sharing inspiring stories from individuals navigating their journey with Postural Orthostatic Tachycardia Syndrome (POTS).
Explore these experiences, and if you’re inspired, share your own story to uplift others in our community. Together, we can foster hope and support.
DISCLAIMER:
The stories and strategies shared below are not medical advice. Please consult with your doctor before making any changes to your health regimen.
Anonymous
submitted January 2025
“I have had mild post viral CFS/ME for 9 years and managed well but summer 2023 I moved into a moldy home (in UK) and by December I had to move back home and was 95% bed bound with new symptoms soon diagnosed with POTs and Migraines as well as all of my regular ME/CFS symptoms and digestive symptoms being massively flared up - I knew this wasn’t just a normal flare up.
At the time I knew nothing about mold illness as it’s not really spoken about in the UK but my functional medicine practitioner suggested a mycotoxin test. The results came back showing off the scale Mycophenolic acid and high ochratoxin and Citrinin. Now I’ve learnt these are definitely the culprits to my ilness getting so bad. We also found some other issues and now I’ve been on a protocol for 7 months and already feeling so much better with not just POTs symptoms but also all me/CFS symptoms.”
Willow Smith
submitted October 2024
“I have been experiencing, what I now know as POTS symptoms for the last few years. They got significantly worse earlier this year. I learned in May that mold was one of the root causes of all my health issues. Once I started seeing my current naturopath in May she diagnosed me with POTS within a month of seeing her. Before that I didn’t even really know what POTS was.
Since seeing my doctor I have also been diagnosed with Lyme, Bartonella, CIRS, SIBO and parasites. I starting detoxing from Mold in June after moving into a clean environment. The detox process made my POTS symptoms a lot worse. I experience hyperadrenergic POTS symptoms, where in addition to tachycardia upon standing my blood pressure also shoots up. I have experienced heart palpitations, tachycardia, dizziness. Most of these symptoms are when I’m standing or going from sitting / laying down to standing. I’ve also had what I call a “POTS attack”. This has happened when I’m sitting. It feels like a ton of adrenaline pumping through me. I start to feel weird, disoriented, nauseous, dizzy, sweaty, faint, and my heart starts beating really fast out of nowhere. I’ll be sitting with my heart above 120 BPM. Sometimes I have tremors, I can’t think clearly, and am filled with anxiety when it’s happening. It takes 15-30 mins for my heart rate and symptoms to calm down after this happens. This has also happened while I’ve been taking a beta blocker.
I’ve learned that someone of the common things that doctors recommend for POTS, like salt, electrolytes, hydration, do not help me. I have also learned that the following makes my POTS worse: manual lymphatic drainage massage (in the end it was worth it but I had really bad flares after this, so many toxins moving through my body), heavy detox treatments (like cholestyramine), high altitude, alcohol, hot temperatures, stress, too much caffeine (I’m tolerating the last 4 things better now)
I have learned that the following DOES help my POTS: ozone therapy (I did 8 MAH treatments and that has made the biggest difference in my POTS), beta blocker (I take bisoprolol), rescue remedy helps calm my nervous system when I’m having a “POTS attack”
Having something that monitors my heart rate has been really helpful for my doctor and I to track everything. I use an Apple Watch. It’s also helped me understand what’s happening in my body when I’m feeling dysautonomia symptoms. Talking with my doctor and others that have POTS has helped a lot.
Learning that I am safe and just need to let it pass has helped because when the attacks first happened it was so scary and I didn’t understand what was happening. It will get better! If you have POTS you may have something else underlying that’s causing it. Advocate for yourself! Salt doesn’t help everyone. Getting more tools to help my symptoms was essential for me. You’re not alone”
Courtney Gloden
submitted October 2024
“My name is Courtney, I am a 34 year old mother and wife. I have been living with POTs for about a year. I started seeing a slow decline in my health at the end of 2023.
I was getting weird symptoms, like waking up at all hours of the night gasping for air with my heart racing, dizziness, sensitivity to heat, sensitive to every food. In February 2024 I noticed my legs were turning purple when I would shower. That was very worrisome to me, as that had never happened before. I went on a cruise the following week and everything seemed ok. It happened again when I got back home.
In the beginning of March, I went to work at one of my clients house as a massage therapist. About 10 minutes into giving the massage, I started having heart palpitations over and over and felt like I was going to pass out. The next few months were a living hell. I couldn't drive or stand up without my heart racing and having horrible dizziness and heart palpitations. I was in the ER more times than I can count. No one could figure out what was wrong.
I couldn't eat or be intimate with my husband without feeling like I was going to die. My mom's cousin mentioned that her neice had POTs. I was in denial at first, until I realized I had every symptom that she had. I saw a cardiologist in May and she diagnosed me with POTs. I couldn't figure out where it came from, but then I was talking to my holistic practitioner and telling her my symptoms. She asked if we had any water leaks in our house. I was shocked. We had been dealing with a major leak off and on in our master bedroom and bathroom since we had moved in a year prior. We were told we would have to rip out the bathroom to fix it, so we were waiting until we could save more to fix it.
My health issues had only gotten bad since I had lived in that house. I immediately left the house and moved in with my parents and we moved out. I started to feel gradually better, but still no where near my normal self. I got pregnant 2 months later and feel like that has saved my life. I have had a few issues with my hydration and electrolytes during pregnancy, but I feel like I can actually live and walk again. My cardiologist said it's because I have a lot ore blood in my body because of pregnancy.
Other things that I believe have helped are, doing a hair analysis test to see where my minerals are and they were very depleted. I am working on building them up again. I stay very hydrated, I cut out coffee, gluten, most dairy, all alcohol. I go outside almost every day and ground to the earth. I cut out everything toxic. I am worried that I will feel bad again after pregnancy, but I am doing everything in my power. I am also seeing an autonomic nervous system doctor to help retrain my nervous system and get out of the constant fight or flight response.
I know my body can heal and it will not happen overnight. I am happy with the progress I have made, but still know I have a long ways to go.”
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