Being upright is a top sport for me
In 2020, when this photo was taken, Naomi Verhoeven was still working as a tour guide at her destination. She then became an educational assistant, until the sun disappeared post-COVID in mid-2022. She has various complaints, but since a second corona infection, it is mainly POTS that dictates her life. “Being upright is really a top sport for me. That is why I spend most of the day lying down, in bed or on the couch.”
Dysautonomia
POTS stands for Postural Orthostatic Tachycardia Syndrome and occurs mainly in women. It is a disturbance in the autonomic nervous system that leads to a sudden abnormal increase in heart rate when standing up and standing upright, while blood pressure remains almost the same. Naomi: "Then I start shaking on my legs, I get dizzy and light-headed. My heart also races, I can be really absent-minded and can't think straight anymore. All because there is too little oxygen-rich blood going to my head in an upright position."
Own initiative
A lot of water flowed through the Rhine before the diagnosis was made. “I went through the entire primary care routine: GP, physiotherapy, occupational therapy, even psychosomatic exercise therapy. But I kept getting sicker and sicker and nobody knew what to do.” Naomi did not give up and decided to investigate herself. “When I heard about POTS through the grapevine, the penny dropped for me and I started reading up on it. To confirm my suspicion, I did an 'active standing test' at home with my boyfriend and emailed the results with information about POTS to my GP. That's how the ball finally started rolling.”
Finally really heard
“It was clear to me that I really had to find a specialist with the right knowledge. I am therefore very happy that I was able to go to the Erasmus MC. I immediately felt that they were really listening to me. They knew everything about POTS and I did not have to explain what PEM is. There I underwent the tilt table test; the gold standard for diagnosing POTS. You first lie flat for ten minutes and then are tilted into a standing position for ten minutes, to induce the symptoms. An important criterion for determining whether you have POTS is if your heart rate increases by more than 30 beats per minute. After that I actually had to stand still for another ten minutes. But after a few minutes I was shaking completely. Then they thought it was enough.”
Finally a diagnosis
A severe PEM crash was the result, but for Naomi the result was more than worth it. “Finally confirmation, for myself, for my environment, finally a diagnosis! With such an invisible condition you are faced with so much disbelief and incomprehension that you eventually start to doubt yourself.” The well-known recommendations in the area of lifestyle and behavior did not yield any progress for Naomi. Under the supervision of the Erasmus MC, she is now trying out various off-label medications.
Quest
“There is no cure yet, so it is mainly a matter of finding something that reduces your symptoms. That is simply difficult. What works for someone else may not work for me.” They have not yet found the golden egg for her, but she does sometimes notice some progress. “Then my heart rate stays a bit lower and I feel less rushed. And I also feel like I can stay upright a bit longer. But I still shower sitting down and I wait for the elevator by squatting. And when I do sit down, it is in a cross-legged position, which is better for the blood circulation.”
POTS on the retina
Going back to work is not an option at the moment. Naomi is currently completely disabled. “C-support really helped me during that process. And I could also ask my questions when I had figured something out myself. To check how they saw it.” It was also very good, Naomi thinks, that factsheet about POTS there is now and that C-support also includes the information about POTS in presentations for professionals. “POTS is absolutely not a new condition, there have already been many studies done on it, but many GPs still do not have it on their radar.”
She concludes with a clear appeal: “I think it is incredibly important that doctors gain more knowledge about POTS and the enormous impact it can have. And that certainly applies to the UWV. I hope that my story contributes to that.”
