POTS is Not Anxiety: Responding to a Dangerous Narrative

A couple of weeks ago, a medical journal was published that has absolutely devastated the POTS community, myself included. Not only was it completely inflammatory, but it was extra personal to me. You see, one of the doctors who published this article (I think all the doctors who are listed in the report work under him, but I’m not completely sure) is the very one who medically gaslighted me in 2015, and told me my POTS symptoms were all in my head. He also told me that he was the only doctor in the medical community with the belief that POTS is not a form of dysautonomia, which is a very dangerous thing to believe, especially when science has proven that POTS is a form of dysautonomia.

It’s been about two weeks since I first read through his “findings”, and I thought by now I’d be able to form coherent thoughts, but I’m still very emotional about the entire thing. Because this is so very personal to me, this is going to sound like rambling. And maybe it is, but it’s also an extremely important response to a dangerous narrative.

If I don’t share my experience (which I already did in a past blog post– I’ll link it later in this post), no one will know just how “out there” this “research” really is, and they won’t know to steer clear of this doctor at all costs. They also will believe this research, without the full picture. When this report was published in the beginning of July, I felt physically sick from reading it. I realized I can no longer keep his name out of my blog, at least not completely. I’m still going to avoid mentioning him by name here, but I will share more, including my opinion on the report itself.

I’m not a doctor, and you all know that. I am not an expert in the medical field, but I am a person who has been living with this condition for over a decade now, and I have done quite a bit of my own research over the years. I’ve been to multiple doctors for my POTS, and I know my symptoms pretty well. While I’m no way an expert on the autonomic nervous system, I am an expert on my own body, and my own experiences. I am sharing my experience with the hope of helping others.

This man has ruined my life, and I know I’m not the only one he has affected. I’m not being dramatic when I say that either, as you’ll understand the more you read about my story.

He has taken money from numerous POTS patients, only to tell them they’re making up their symptoms in their head. Who knows how many people it’s been in total, but I’ve seen quite a few people mention it in support groups over the years. It’s mostly spoken about in the comments sections, since whenever an actual post is made is made about a doctor or a clinic that is negative, it is taken down right away. Anytime someone asks in the groups if they should go to this clinic, since it is called a dysautonomia clinic, I quickly comment “NO! Stay away!!” and tell them a quick version of the story, or message them with the details.

The clinic, which is called a dysautonomia center, only treats Familial Dysautonomia (at least that’s the way it was in 2015), but they didn’t tell me that when I called to make an appointment, a couple of months after my diagnosis in the fall of 2014.  It should be renamed the Familial Dysautonomia Center, since that is what they specialize in. They were all too happy to take my money for a new Tilt Table Test in their own facility, and a consultation appointment a few months after the testing.

They took my money, knowing they don’t believe POTS is a form of dysautonomia (I’ve said it before and I’ll say it again– it is like saying Leukemia is not a form of cancer) and told me it was all in my head. He also said he didn’t believe in other conditions like fibromyalgia. He seems to believe in other forms of dysautonomia, but just believes that POTS is only psychosomatic in nature.

I recently heard that now he takes people with other forms of dysautonomia, and now not POTS patients. You know why? Because he doesn’t believe POTS is a form of dysautonomia! That doesn’t reverse the damage he’s done to all of those he has already seen, and he’s still trying to change the narrative and classification of this disease, which has already been identified as autonomic dysfunction years before.

Whew. Okay. I need to take a step back. I need to try to detach myself from this a bit in order to talk about this with less emotion, but it’s extremely hard for me. I am still living with the repercussions of this man’s words and actions all these years later– 7 years total. I still have major PTSD about it all, and just typing this is triggering my anxiety in a way that can’t be healthy.

But it’s also one of the most important things I can share, in my opinion. I cannot and I will not stay silent while a doctor with an obvious agenda pushes bias and lies, trying to create an experiment to further push his own beliefs on a serious chronic illness that affects millions– and millions more post-COVID.

*Takes a deep breath* Let me try to start from the beginning, because I know I’m not making much sense right now.

Background

First, everyone (who has not already read it) needs to read the story I told a few months ago, as it’s paramount to the rest of this blog post. You can find the past blog post here– “It’s All In Your Head”, A Story of Medical Gaslighting.

I told this story as one of my first blog posts, knowing it was one of the most important stories I could share in order for everyone to better understand the full picture of my own story. I left out the name of the doctor because I did not want this doctor to somehow sue me for slander or defamation, even though I was sharing my honest experience, and I had two witnesses (both of my parents) to the whole thing. Whenever I tried sharing this story in Facebook support groups after it happened, it was taken down, as I mentioned above, saying that for legal reasons, I was not allowed to share a negative experience with a doctor. 

While I understand that it would be horrible for someone to share a false story and try to ruin the life and career of a doctor when the story is not even true, it is not fair that we have to keep our truthful stories to ourselves, especially when it can potentially affect so many people. I know for a fact that before and after me, he has continued to do this to others, and because I’m just sitting back, I feel like I’m helping him instead of informing my fellow POTS sufferers, which I feel is my duty.

So when I started writing this blog, I decided to share my story. I kept the doctor’s name out of the story, still fearful of any repercussions. I’m a chronically ill woman who has been unable to work since 2014. I have no income (and thanks to this man, still no disability– we’ll get to that), and my parents, who should be retiring and thinking about enjoying their lives, can’t retire because they don’t have pensions. We live in one of the most expensive places in the country– Long Island– and they have to keep supporting me, who is too sick to work, yet constantly denied disability.

I can’t afford to be sued– physically, mentally, and financially. For those reasons, I wrote my story but kept out the name. I figured, if local people with POTS wanted to contact me and ask me who it was, then I could share. I was hoping they would, because just helping one person not suffer the same fate I did with this man is a huge feat.

The reason I’m constantly denied disability is directly connected to this man as well. I tell my disability story in two parts, Part 1 and Part 2. While these posts aren’t necessary to read the rest of this blog post, I linked it in case you were interested in my whole story, and how his words are following me around like a parasite. 

At this point, you should have read the blog post where I talk about my experience, where I was told it was all in my head, and that he believed POTS was not a form of dysautonomia. He told me that I had POTS, but that I was creating the POTS in my head, and therefore creating all of my symptoms mentally.

After I left his office, he wrote a letter to my then cardiologist, stating I “do not have dysautonomia”, only because he did not believe POTS was a form of dysautonomia. Remember, he only treated Familial Dysautonomia (FD), which is a completely different kind of dysautonomia, and mostly affects those with Ashkenazi Jewish decent. FD involves many developmental delays, which no other form of dysautonomia has as a feature.

Since he said I did not have dysautonomia, the cardiologist believed I did not have POTS, even though I told him the entire story. Of course though, a doctor is going to believe another doctor, whether they know them personally or not, and I don’t think he ever fully believed my side of the story. A doctor who has a dysautonomia center, who doesn’t call it a Familial Dysautonomia Center (which it needs to be, because this is why everyone is going to see him, thinking he can help them with their POTS), should know what he’s talking about and be the expert on autonomic dysfunction, right? Wrong. So wrong.

I decided I needed to find another cardiologist, and have been bouncing around to different ones since, as I can’t find one who knows enough about POTS to treat it. I did find a neurologist, who does see a lot of POTS patients, and has been my savior.

Since POTS is a form of dysautonomia, which is autonomic dysfunction, it is a neurological condition that affects our heart rate, among many other things. For that reason, neurologists are often who treat it, but cardiologists and electrophysiologists sometimes do as well if they’re well-versed on it (which many are not). I do need a cardiologist as well, for annual visits and to check on things, but my neurologist has been treating my POTS since 2015, and he is the only Long Island doctor recommended by Dysautonomia International. 

So-Called “Research”, and Why it’s Dangerous

The new “research” (I write it in quotes because this the most biased research I’ve ever seen, and so much is unaccounted for in this “research”) states that POTS patients get anxiety before they stand. He calls it “fear conditioning” and basically says that people with POTS are afraid of standing. AFRAID OF STANDING. I couldn’t make this up if I tried.

The report feels like something that was written in the 1960s, when real conditions were called “women’s hysteria”, and our symptoms and actual diagnoses were overlooked and ignored.

According to the report, the testing was conducted between the dates of February 2014 and February 2020. Interesting, considering I went there looking for treatment, but received only a thirteen-hundred dollar diagnosis of “it’s all in your head”, in May and August of 2015. The Tilt Table Test was in May, and I waited 3 months for the follow-up in August.

The report claims that everyone was aware they were a participant, but were they? Now I’m wondering if I was used for this sham of a research study unknowingly. If not, did he collect money from his participants as well? I’m guessing that wouldn’t be allowed? Of course I don’t know, but it is interesting that I saw him during the period he was doing this research project of his.

Only 28 POTS patients were used in the test and 21 healthy participants, which is not a lot of people to come to such an outrageous conclusion.

The report at least admits that POTS can be very impairing, “The syndrome affects an estimated 3 million Americans, mostly young women, can significantly impair quality of life, and cause major disability.” The problem is, in the whole paper they’re saying it’s impairing because we’re getting anxiety about standing, and it’s causing psychosomatic symptoms.

However, then it gets into how “classic Pavlovian fear conditioning could mediate the pathogenesis of postural tachycardia syndrome.” The definition of pathogenesis is the manner of the development of the disease. How and why would POTS develop out of a fear of standing? It doesn’t even make sense. How?? 

My POTS began after a viral infection (likely Strep throat, possibly the flu), and many others got it after having COVID. It’s also something that can be developed from having Ehlers-Danlos Syndrome and/or autoimmune disease, post-concussion, during or after pregnancy, trauma, and many more. Millions of people didn’t just suddenly become afraid of standing, out of nowhere.

I do realize that viral infection can cause a plethora of things, OCD included (just look at PANDAS, which is where Strep throat causes OCD and tics in children), however that is not what is happening here. It has been proven in other studies that people with POTS do not have any more anxiety than the general population.

Additionally, even if this was caused by anxiety, there’s no accounting for the autonomic dysfunction that is occurring in addition to the tachycardia. My pupils are constantly pinpricks and changing size all the time (an autonomic dysfunction), my digestion is affected, I have a ridiculous amount of brain fog, I have bladder-emptying problems (incomplete emptying, where I have to pee 5 minutes after I pee) that I never had before I got POTS. I have temperature regulation problems, sleep disturbances including a reversed circadian rhythm and insomnia, vestibular dysfunction caused by dysautonomia, the blood pools in my legs (very visibly so), just to name some of the symptoms that are part of my autonomic nervous system, and therefore caused by a dysfunctional autonomic nervous system. Anxiety cannot cause all of this.

Now, don’t get me wrong, I’m not saying that you can’t develop anxiety about standing after having POTS for a long time. If you’re like me and every time you stand you become extremely symptomatic, you’re obviously going to feel hesitant to do that thing that makes you feel so horrible. Who wouldn’t? There are so many symptoms that we get just from standing– but there is a physical, scientific reason for it.

POTS is a condition that affects blood flow, and it is a form of orthostatic intolerance. There are multiple things happening at once when we stand, all caused by the autonomic dysfunction. Many people with POTS have lower blood volume, and therefore a lower amount of blood in circulation. In addition, when we stand, the blood pools in the lower extremities and the stomach.

When a healthy person stands, their nervous system works to make sure everything is working smoothly so they receive enough blood to the brain. Their heart rate increases 10-15 beats-per-minute, then settles back down. In contrast, when someone with POTS stands, their heart rate jumps up 30 beats-per-minute or more, and stays elevated for 10 minutes or more. That’s just diagnostic criteria, but it can be increased quite a bit, and last for a while. Mine has increased more than 100 beats-per-minute many times, and it feels absolutely horrible.

Along with the tachycardia, we experience a number of debilitating symptoms when standing that range from lightheadedness, dizziness, weakness, tremors, headaches, brain fog and confusion, vision dimming, syncope (fainting), and more. Once again, all of these symptoms have a real, scientific reason for why they happen– and none of those reasons include fear or anxiety.

To say that all of our physical manifestations of this illness are because of fear and anxiety is not only is extremely insulting, it’s plain wrong. It’s been proven by decades of research that it’s due to a dysfunctional autonomic nervous system. He calls “postural tachycardia syndrome” a “functional psychogenic disorder”. The definition of psychogenic is having a psychological origin or cause rather than a physical one.

I’m someone who has had anxiety for their entire life, and I mean that pretty literally. I remember being a toddler and having severe separation anxiety whenever my mom left the room, and even worse whenever she left the house, and the age of 8 I was diagnosed with OCD. I have been living with anxiety and OCD for over 30 years, so I’m a pretty good candidate for someone who knows the difference between my anxiety and my POTS.

POTS does cause our fight-or-flight response to go off quite a bit, and it can give feelings similar to anxiety at times. But the two are very different.

It is a fact that you can have both POTS and anxiety, like I do. It’s also a fact that POTS can cause anxiety-like symptoms, and research has proved that these symptoms are not the same as actual anxiety.

As I mentioned earlier, there has been multiple research done that has shown that POTS patients do not have more anxiety than the general population– they have the same amount, if not less than the general public. Dysautonomia International talks about this fact in their explanation of POTS, and cites 4 different research studies that prove this fact at the bottom of their page.

Outrageously, this report goes on to state that in the patients with POTS, they were “paying greater attention to surveying bodily sensations of chest discomfort and symptoms of hyperventilation (breathing, numbness, tingling, dizziness) — all features reported to determine susceptibility to fear conditioning.” So what he’s saying is that people with POTS are having symptoms, and the only conclusion he can come to is that it’s anxiety, and not the actual autonomic dysfunction that it’s been scientifically proven to be? How is that not biased?

Then the report continues on, “All patients with postural tachycardia syndrome developed characteristic symptoms upon head-up tilt (73% palpitations, 61% dizziness/light-headedness, 63% diaphoresis, 54% shakiness/anxiousness, and 23% flushing). In addition, 90% developed hyperventilation, 53% shortness of breath, 43% numbness, and 30% tingling. None of the healthy controls experienced symptoms during tilt.” I wonder why? Could it be….. because the healthy people don’t have POTS? What a discovery, Columbus!

“During head-up tilt, patients with postural tachycardia syndrome had significantly higher plasma catecholamine levels than controls, indicating a more pronounced sympatho-adrenal response.” Do you know what a sympatho-adrenal response is? Fight-or-flight. It is the body’s response to severe stress, which evolved out of our ancestor’s need to survive in much more dangerous times. You know what fight-or-flight feels like, even though it’s not? Anxiety and fear. And there we come, full circle.

The report ends with “Finally, we do not know if these findings are a cause or a consequence of the syndrome, but it is likely that fear conditioning contributes to the hyperadrenergic state when standing in affected patients and may serve to propagate or maintain the syndrome. Our statistical modelling suggests that, in patients with postural tachycardia syndrome, excessive attention to somatic afferent information, combined with anxiety, is associated with a fear conditioned response to orthostasis that triggers a fear-like neuroendocrine autonomic response, featuring tachycardia and hyperventilation.”

“Recasting postural tachycardia syndrome as a functional psychogenic disorder associated with somatic hypervigilance and anxiety leading to a fear-conditioned hyperadrenergic state when standing opens the possibility of refocusing the therapeutic strategy, with greater emphasis on cognitive-behavioral approaches.”

Cognitive behavioral therapy for POTS, an autonomic disorder. I am absolutely appalled.

It was done to further push his own agenda and bias on POTS. He was adamant that POTS was not a form of dysautonomia, and he assumed 7 years ago that it was all in my head. Of course he was going to try to push his own belief and create his own research study to “confirm” it, even though it’s one that every other scientist in the field has proven to be wrong.

The research was funded by the National Institute of Health, which I think could have found much better ways to spend their money. I was also funded by the Familial Dysautonomia Foundation, Inc., which is a bit odd to me. I’m guessing the doctor is associated with it directly, because why would the Familial Dysautonomia Foundation be footing the bill for research on POTS? It doesn’t make sense to me.

You might be wondering…. why does one report matter? It’s just one report, how big of a deal could it be?

One report is all that’s needed for the wrong person to read and spread the (wrong) information that POTS is all in our heads. What if a doctor who had a POTS patient decided this was the truth, and is now telling their patient it’s all in their head?

What if Google started showing this medical journal as the top search when you google “What is POTS?” or “What causes POTS?” That would be absolutely horrible. Imagine the misinformation that would spread.

What if this is what a judge finds when someone applies for disability? I already know the hard way this can affect your disability approval outcome, because it affected mine. I shared above that this doctor who published this medical journal is the reason I’m denied my disability.

This one report affects millions of us, and without proper response to challenge it and this doctor’s beliefs, it will be allowed to go further. I wasn’t going to stay silent and let this happen. POTS affects millions upon millions of people worldwide, and it is a very real, very physical and debilitating chronic illness that needs more proper non-biased research.

POTS is not Anxiety: The Proof

There are many different medical journals and articles published that have proved that POTS is not anxiety, and it has been misdiagnosed as such in the past. Here are just a few.

1. POTS Misdiagnosed as Anxiety
   Notable quotes:
   “This condition can pass undiagnosed for many years and is often mistaken as an anxiety disorder due to some of its hyperadrenergic manifestations.”
2. Cognitive and Psychological Issues in Postural Tachycardia Syndrome
   Notable quotes:
   “These symptoms are strongly somatic, and not psychological, suggesting symptoms in POTS are phenomenologically distinct from panic disorder.””Raj et al. found that adult POTS patients did not have increased current or lifetime prevalence of anxiety disorders. POTS patients, however, scored as moderately anxious compared to the background population using a non-discriminating questionnaire that measured both somatic and psychological symptoms (Beck Anxiety Inventory). In contrast, POTS patients did not have elevated anxiety on a questionnaire weighted to measure psychological anxiety symptoms (Anxiety Sensitivity Index). They concluded that the clinical appearance of anxiety in POTS was likely related to the illness rather than representing an anxiety disorder.”
3.  The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management
   Notable quotes:
   “When a newer, cognitive-based measure of anxiety (the Anxiety Sensitivity Index) is used, there was a trend toward less anxiety in the patients with POTS than the general population (15±10 vs. 19±9; P=0.063)]. Thus, much of the anxiety attributed to patients with POTS might be due to a misinterpretation of their physical symptoms.”