Charlotte

I had been feeling increasingly exhausted over the previous several years and nothing seemed to help. After multiple tests and spending the better part of a year on a waiting list for NHS Cardiology, I was diagnosed by a private Cardiologist. At that point, travel was extremely difficult because my symptoms had affected my mobility to the point where I was in bed most days. The result of such poor mobility for so long, of course, was deconditioning and worsening of my symptoms.

How has PoTS affected your life?

2024-5 was the worst time in my life. Every day, I felt as if it were the middle of the night and as if I had the flu at the same time. I was always groggy, weak, and slow. Mornings and after meals were especially difficult. Understanding words and forming correct words took time. I was shaky and irritable when I was standing. Bending forward was awful. I was sleeping 10-12 hours per night plus 2-6 hours during the day. Previous to this, the highlight of my day had always been walking my dog in the mornings. I missed that every day.

What is the biggest challenge?

The biggest challenges physically were just moving around in the kitchen or moving around at all after a shower or after meals. Splanchnic pooling is still a problem, as is histamine.

What lifestyle changes have worked well for you?

I increased sodium and fluids. I used class III abdominal high compression. That alone didn’t help much, but it is a daily necessity. I went through an elimination diet and tried different meal options. In 2026, I finally found a diet and routine that worked. In the mornings, I focus on rehydrating with sodium, carbs, creatine, and milk. I take methylated B vitamins, vitamin C, liposomal iron, omega 3, and betaine. I wait until after 2pm to have meals and most snacks, when my fluid volume can handle the splanchnic pooling (otherwise I have to lie down and probably go to sleep while my meal is digested). A high carbohydrate meal (complex carbs) right before bed helps a lot with morning fatigue. When I shower, I use a shower stool, ensure the water is lukewarm, keep it short, and rest afterwards. I also have a whole routine for bed to make sure I get quality sleep. I keep to a fairly strict schedule, but it’s worth it. Most days now, I feel better and stronger than ever. I am very motivated to exercise and gaining muscle as I know this will only improve my symptoms going forward.

What medication have you tried? What has worked and what hasn’t?

Low dose naltrexone has been helpful. It allowed me to increase my floor exercises and move from walking with a rollator to a walking stick and eventually walking outside on my own. With compression, hydration, a low histamine diet, and the right timing for my meals, I can now do cardio and strength training most days. I can also walk my dog again. Famotidine helped somewhat, but avoiding high histamine food has been more effective for me. Prednisone has helped on a temporary basis during times of travel. Sodium cromoglicate eye drops have helped my morning eye pain.

Do you have any wise words/messages of hope for those who may be reading this and looking for guidance?

Get familiar with anatomy & physiology, human biology, and chemistry. Learn to read peer-reviewed research articles critically. I’m lucky that I have a background in science because it definitely came in handy. No one else but you will be curious enough about your condition to really consider the in-depth explanations for your individual symptoms. I keep a record of my symptoms, treatments, and outcomes including the pathophysiology, pharmacodynamics, and current research behind it all. It’s important to separate the PoTS symptoms from the MCAS symptoms, so you know how to manage each one. Be willing to trial and error a lot of things that will potentially make you feel worse, so you can eventually find the things that work for you.

What would you like to say to someone who knows nothing about PoTS?

There’s a lot to it. I would say, even if you think you know what it is, you probably have a lot more reading to do.

What is your biggest hope in terms of PoTS and raising awareness?

I don’t think this is a condition that most people will understand. It’s complicated and the treatment has to be completely individualised. Most people want a quick explanation and don’t have the patience to consider the complexity of chronic illnesses or the context surrounding these strange groups of symptoms.