fear of standing….

Before we discuss the bullshit POTS article released this month, I would like to first extend the absolute biggest, most extravagant “THANK YOU” that I can to you all for your comments and private emails on my last post about Epstein Barr virus (EBV). I’m still learning about it, but all of the information you provided has been extremely helpful. I don’t want to be overly dramatic, but I love you and think you might be the greatest people on earth.

I wish I had a gift that I could offer in gratitude, but that’s difficult to do online, so instead I leave you with this silly video of my dog and hope that it brings you a little joy:

Now on to the infuriating article. Quick disclosure: I’m not scientist or researcher, and I haven’t taken a science class since high school Human Anatomy with Mr. Seaquist. So, not only is this a layman’s interpretation of the study, it’s a pretty amateur one at that. I also want to acknowledge that this a giant oversimplification of a complex study.

The Study

On July 8, 2022, an article was published in Brain, a peer-reviewed scientific journal of neurology, titled “Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome.” The article is based on a study of 28 patients with postural tachycardia syndrome (the article never mentions postural orthostatic tachycardia syndrome – or POTS) and 21 controls examining the role of “fear conditioning” and whether it plays a role in the increase heart rates (tachycardia) and inadequate blood flow to the brain seen in POTS patients.

Fear Conditioning

According to the article, fear conditioning is a concept in experimental psychology where a person (or animal) learns to associate a neutral stimulus with some aversive fear-inducing stimulus. So as an example, my dog hates baths. He has to be put on a leash so that he doesn’t run away during bath time. That’s the aversive fear-inducing stimulus. When I grab the bottle of dog shampoo, his ears go back, his tail goes between his legs, he lowers his head, cowers, and tries to hide in a corner. In short, he becomes fearful. Grabbing the shampoo bottle is the neutral event – there’s nothing negative about a bottle of shampoo in itself, but he associates the neutral stimulus – seeing me grab the bottle of shampoo – with the fear-inducing stimulus – the misery of a bath. Even if I’m only cleaning up the garage and moving the dog shampoo bottle to a different shelf, it induces the same response. That’s not a great example, but hopefully you get the idea.

So, back to the study. The researchers strapped the subjects to tilt tables and played an audio warning that the table would be tilted up shortly. (For my non-POTS friends, this is how the tilt table test works – you’re strapped to a table and it is tilted head-up while your symptoms are monitored). The researchers measured the subjects’ cardiovascular, respiratory, neuroendocrine, and cerebral blood flow responses to the audio announcement warning that the table would be tilted and to the actual tilt, and compared the two. Patients and controls were also asked to complete state and trait anxiety tests.

State and Trait Anxiety

From what I understand, state anxiety and trait anxiety are two different forms of anxiety. State anxiety is a temporary anxiety that arises when in a frightening situation. Symptoms include tachycardia, nausea or GI issues, muscle tension and pain, and fast or labored breathing.

Trait anxiety is a more long-term form of anxiety where it’s part of your personality, or a character ‘trait’. It can result in feelings of worry and apprehension. Trait anxiety symptoms include changes in mood, trouble concentrating (aka brain fog), insomnia, fatigue, aches or pains, I took a sample trait anxiety test online to see what kind of questions might have been asked during the study. For the record, according to test, I have moderate anxiety, which with everything that’s been going on lately, I’ll take that as a win.

The trait anxiety test asked me to rate things like whether I felt calm, secure, nervous, whether I worried over any misfortunates or felt tense. If you’d like to see an example of the test, you can check it out here.

The Results

During the tilt table test, POTS patients’ heart rates and plasma catecholamine levels increased while cerebral blood flow decreased. That’s nothing new or unexpected – that’s POTS. However, what was surprising was that POTS patients’ heart rates actually increased before standing, when the 30-second announcement was given. The study labels this “anticipatory tachycardia”. According to the study, POTS patients had a “two-fold greater heart rate increase than healthy controls” during the 30-second period after the warning was given but before the table was actually titled. Although the article doesn’t say as much, that suggests that healthy controls DID have a heart rate increase in response to the warning, it just wasn’t nearly has high as POTS patients’.

But then the next section says that, in response to the actual table tilt, POTS patients had a heart rate increase of 51 (+/- 13) compared to healthy controls’ increase of 24 (+/-12). So, the heart rate of POTS patients increased by twice as much as healthy controls. SO WHY ARE WE SURPRISED THAT THE HEART RATE OF POTS PATIENTS WENT UP BY THE SAME PROPORTION – 2X – DURING THE 30 SECOND WARNING PERIOD?? Doesn’t that show consistency if the proportional increase is the same? Why is it only fear conditioning when the heart rate rises of POTS patients, but not of healthy controls?

I also want to be clear that this study was conducted in a medical setting. If you strap me to a table while I’m in a hospital gown with several doctors and nurses staring at me, and with a line in my vein to draw blood during the test, I’m going to be super anxious. If I’m relaxing on the couch at home and husband asks if I can come help him in a minute, my heart rate doesn’t increase at the knowledge that I’ll be standing in a minute. I’m afraid of the goddamn tilt table test, not standing in general.

To be clear, I’m not arguing that the data in the study is wrong, nor am I arguing that we don’t exhibit fear conditioning in advance of the tilt table test. I think that’s a normal learned response to a painful stimulus, as shown by the tests involving administering shocks to mice at the same time a light comes on, or my dog running when I pick up a shampoo bottle. If I tied a person’s hands behind their back and told them that in 30 seconds, I’m going to punch them as hard as I can in the gut, kick them in the shins, and pour ice water over their head, what do you think their heart rate will do for that 30 seconds? Because that’s what the tilt table test feels like.

I’m also not arguing that standing, in general, doesn’t make me a little anxious. It can, although it’s situational. Standing for long periods of time requires that I have faith in people around me – strangers around me – that if I lose consciousness, the absolute worst they’ll do is leave me lying there. Certainly I hope they’d help, and I’d like to think most strangers would, but I’ve watched enough real crime dramas to know there are some bad people in this world, and being unconscious in a room full of strangers is terrifying. Standing up for long periods or on super symptomatic days is the precursor to that. It’s a very vulnerable feeling. So, yeah, in some situations standing does make me anxious.

There are so many other symptoms to POTS besides just the increase in heart rate, reduced blood flow, and increased catecholamines that were tested in this study. And not all of the symptoms are related to standing. If POTS patients exhibit signs of fear conditioning 30 seconds prior to standing, nothing about that means that the dizziness, lightheadedness, brain fog, heart palpitations, tremor sweating (or lack of sweating), fatigue, headaches and migraines, insomnia, chest pain, nausea and other GI symptoms, shortness of breath, and blurry vision any less real. And what about the many, many POTS patients with comorbidities? The POTS is psychosomatic, but the neuropathy is real? And those of us with neuropathy just got together and were like, hey, let’s all pretend we have this shit called POTS?

The results also showed that POTS patients scored higher on the state anxiety test and the depression test, again by almost double of what healthy controls scored. I don’t see in the article where it discloses how POTS patient scored on the trait anxiety test, which is interesting because that’s the one that measures anxiety as a character trait, rather than situational. I also don’t see in the article whether the anxiety test was administered on the same visit as when the tilt table test was performed, but I’m going to give the researchers the benefit of the doubt and assume they’re not stupid enough to do that. The patients in the study had already been diagnosed with POTS, so presumably they’ve been through a tilt table test and probably have memories of how awful it was. If you gave me an anxiety test right before I was to have a tilt table test, my responses would differ than a few days after.

According to the abstract, “these findings suggest that the postural tachycardia syndrome is a functional psychogenic disorder in which standing may acquire a frightful quality, so that even when experienced alone, it elicits a fearful conditioned response.” The article suggests that these results may have therapeutic implications, since they feel POTS is a psychogenic disorder, ad that cognitive-behavioral treatment may be beneficial.

Lastly, the article identifies the funding sources for the study as a National Institutes of Health grant and the Familial Dysautonomia Foundation, Inc. Familial dysautonomia is a genetic form of dysautonomia. It is extremely rare – only 350 people in the world have it. Familial dysautonomia generally affects people of Ashkenazi Jewish decent and is a much more serious form of dysautonomia – only 50% of patients make it to 40 years of age. The oldest living person with familial dysautonomia is 60. It is exceedingly more serious and rarer than POTS. So why is an organization that “works for the benefit of all people afflicted with FD” partially funding a study about POTS? I don’t have the answer to that.

This study is particularly concerning to me because it reverts back to blaming POTS symptoms on anxiety. We’ve spent years trying to dispel that myth, and there are scholarly articles written by knowledgeable POTS specialists dismissing the idea that POTS is just anxiety. Because it’s not. It’s This article sets us back significantly. My POTS cardiologist is retiring and I have my last appointment with him this week. After that, I’m on my own to find a new doctor that knows anything about POTS. I’m now a little concerned that whoever I call might read this article and tell me it’s all in my head, that this is all just fear conditioning.

“People understand me so poorly that they don’t even understand my complaint about them not understanding me.” – Soren Kierkegaard

Smell ya later.
– Linds