r/neurology • u/Slight-Garage-4168 • 4d ago

Clinical How many patients do you see with postural orthostatic tachycardia syndrome (POTS)?

How many patients do you see with POTS and do you feel comfortable taking care of them?

34 Upvotes

85% Upvoted

70 comments sorted by

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u/a_neurologist Attending neurologist 4d ago

I see many patients who carry a diagnosis of POTS. I am comfortable taking care of their neurological issues, such as they are. I don’t recognize POTS as a neurological condition because the condition does not involve any neurologist specific evaluation or neurologist treatment.

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u/Slight-Garage-4168 4d ago

Thanks for this insight! That seems to be the case with cardiology too.

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u/a_neurologist Attending neurologist 4d ago

What also seems to be the case? That they do not recognize it as a cardiac condition?

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u/Slight-Garage-4168 4d ago

Yeah that they don’t see it as a cardiology condition.

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u/Auersrods 4d ago

I wonder if what you are seeing might be more due to the fact that it’s wayyyyyy over diagnosed and many patients who carry the diagnoses don’t actually meet the criteria and/ or have not had other conditions ruled out. This is similar to other illnesses that for the lack of a better term are “fad” illnesses that become popular on social media and patients self diagnose or seek out providers that will give them the diagnosis. Unfortunately, this results in frustration and skepticism from doctors. Added to the fact that treatments aren’t great, it can be difficult for both patients and doctors. EDS and fibromyalgia are also some illnesses that have had the same phenomenon.

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u/Hot-Fox-8797 3d ago

Is it a fad or are loads of people getting it as an implication of covid

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u/Auersrods 3d ago

Regardless of the cause, people need to meet a diagnostic criteria after an appropriate clinical evaluation in order to receive a diagnosis. Many patients do not.

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u/supermaja 4d ago

Isn’t POTS a form of dysautonomia?

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u/Auersrods 3d ago

It is, but the exact pathophysiology isn’t well understood.

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u/poppyisabel 4d ago

Fad 😂 I didn’t even know what POTS was until I was diagnosed. Had never heard of it. It’s bloody awful I don’t know why anyone would want to pretend to have it for fun.

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u/kalaneuvos Resident 4d ago

I don’t think a ”fad” diagnosis is usually something that people pretend to have for fun. This is how I’ve conseptualized it: 

Non-specific symptoms such as fatigue, brainfog, pins-and-needles sensations, and palpitations can be caused by a host of different conditions. When some disease that can cause all kinds of unspecific problems gets better known by the public, doctors tend to notice an increase in patients who suspect they have this disease. So when one year they see an influx of patients that suspect they have let’s say Lyme disease and the next year similar patients mostly suspect they have hypothyroidism those diseases can (jokingly) be compared to ”fads”.

Edit: typo

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u/poppyisabel 3d ago

Yeah I like that. I agree. It’s just sad that non specific symptoms like the ones you listed are often are dismissed by doctors who are strapped for time so patients feel like they need to research to find what is wrong with them. It’s really difficult having non specific symptoms and not knowing what is wrong with you or having a treatment plan.

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u/twistthespine 1d ago

I don't agree that doctors dismiss these problems due to lack of time. Generally they dismiss these problems because, in the 99% of cases where there isn't a specific and unambiguous cause, there's very little a doctor can do. It often just wastes everyone's time to try to treat it, because our current treatments are very few and of limited effectiveness.

In the 1% of cases where there is a definable cause for these kinds of symptoms, often the best strategy is to wait and watch, and one of two things will happen:

1) it will resolve on its own or

2) whatever disease process is at work will cause more specific symptoms once it progresses slightly, narrowing down the endless list of possible tests to a manageable level

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u/twistthespine 1d ago

It’s really difficult having non specific symptoms and not knowing what is wrong with you or having a treatment plan.

This part is absolutely true and it's natural to feel that way. In my opinion it's important for providers to prepare patients for the very likely possibility that the cause is probably, in the end, actually unknowable. Even if you get a specific name to put to it, it will most likely be one of those conditions, like POTS or fibromyalgia, where the name is simply a description of symptoms and doesn't actually say anything about WHY they're happening.

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u/smaug81243 22h ago

My cardiologist suggested that covid is causing POTS.

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u/Auersrods 22h ago

There are tons of theories surrounding POTS and little hard evidence as to what exactly happening and why (beyond the observable and measurable clinical manifestations). It’s pretty speculative to say that COVID is causing it, but some people do think there is an autoimmune tie in, so it’s not completely out of left field. Many times with health issues, people observe a phenomenon and label it, but then over time it’s discovered that there are several distinct disorders and causes to a certain symptom. POTS is likely many different things.

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u/pallmall88 3d ago

Isn't it funny how eds and dysautonomia seem to run together? And then there's docs who see them as being fads because they don't have a pathophysiology to describe it with, so, obviously it's just overdiagnosed because without a pathophysiology we have a really great understanding of what makes it a disorder or syndrome and can make those statements definitively.

/S

I think/hope your sentiment is genuine (and your criticizing your colleagues not patients), but phrasing what's ostensibly a jab at th medical institution and it's shortcomings like this reads extremely....insensitive. 🤷‍♂️

Do with that what you will.

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u/Auersrods 3d ago

FYI, I don’t think sarcasm is an effective way to prove your point, and I think that you are drawing inferences that aren’t supported by what I said.

I’ll reiterate that It’s simply a fact that patients come in frequently claiming to have a certain set of illnesses, POTS, EDS, MCAS, fibro, chronic Lyme, etc. but may not meet a diagnostic criteria for them. These patients may carry other medical conditions or psychiatric (mood disorders or personality disorders) that may also be contributing to their described symptoms. Some patients do, in fact, have these disorders that have been popularized and really desire to have their problems fully investigated and explained. But another subset of patients insist on their desired diagnosis and are upset when other explanations are given. They will inevitably jump to the next provider in seeking what they want.

Do with that what you will.

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u/Practical_Yak_7 9h ago

A ton of it is just unrecognized upper airway resistance syndrome (UARS)/OSAS (they're the same disorder in most cases IMO but ppl w/ an AHI >5 get a diagnosis & treatment while the rest of us suffer).

ME/CFS, fibro, Gulf War illness, Long COVID, chronic Lyme, sick building syndrome, & on & on - in many cases all variations of the same syndrome - UARS/OSAS.

The EDS connection is explained by the fact that ppl w/ connective tissue laxity have more collapsible upper airways.

https://www.reddit.com/r/neurology/comments/1jp69k0/comment/mlnm5pb/

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u/pallmall88 3d ago

Yeah I mean if you want to just ignore my poorly made point that's cool too. 🤷‍♂️

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u/Auersrods 3d ago

Given that your point is unclear and poorly communicated, there is very little meat on the bone to address directly.

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u/pallmall88 3d ago

Aw man, I'm sorry. Let me try rephrasing it.

"You sound like an insensitive ass."

Does getting more direct help?

→ More replies (0)

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u/maeasm3 3d ago

🤔 that's interesting. A cardiologist is who had me undergo the tilt table test and who manages my POTS.

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u/tirral General Neuro Attending 2d ago

Some cardiologists are interested in managing POTS, especially EP in my area. I even know one neurologist who specializes in dysautonomia specifically. He did movement disorders and a large percentage of Parkinsonian patients get dysautonomia, so he titrates midodrine and fludrocortisone and all that.

I'll use propranolol in the appropriate setting (POTS + migraine). I think neurologists do have some limited role to play in managing this diagnosis. But I think the most appropriate specialists for the majority of POTS patients are cardiologists, usually EP.

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u/tirral General Neuro Attending 2d ago

Curious, did you see cardiac electrophysiology? Many cardiologists just want to do heart caths / ischemic workups. In my area, EP does tilt table tests and manages POTS. 

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u/Chemical_Bet_2568 1d ago

Anecdote, from an anesthesia standpoint. I worked at an eye center, we requested cardiac clearance on a pt with POTS. Cards refused to clear bc “she does not have any cardiac problems.”

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u/MechanicBright8644 4d ago

How is POTS not a neurologic condition when it’s caused by a a problem in the autonomic nervous system? A tilt table test is usually conducted in neuro departments in academic facilities is it not?

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u/Neuronosis 4d ago

Because it's usually not caused by a disorder of the autonomic nervous system. It's a disorder of stroke volume and venous return. Autonomic testing usually shows an intact autonomic nervous system.

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u/Background-Ad-6279 4d ago

Yes, it is. Tilt table is the gold standard.

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u/brainmindspirit 4d ago edited 4d ago

First time I ever heard that ridiculous moniker was from this teenage young lady who drove all the way to the Mayo clinic to tell em, "my heart goes real fast every time I stand up." They "diagnosed" her with POTS. When she spelled out for me what that meant, I observed, they had merely re-stated her presenting complaint in Greek. Turns out, she had an autoimmune ganglionopathy.

Most of the cases I'm seeing have Ehlers-Danlos, another trendy disease although I think there's something to that, conceptual value at least. (Plus, it really is a syndrome, not just a symptom. And plus, it has a much cooler name.) In those cases, I kind of suspect the problem is at the level of the blood vessel, and thus isn't my problem in particular. Plus, we typically have bigger fish to fry (ie migraines and such)

As for the others, I dunno. I feel like I'm pretty good at diagnosing efferent autonomic defects, and I'm pretty sure POTS isn't usually that, although that's how my teenage girl started out. Feel quite a bit less confident diagnosing afferent autonomic defects, and I'm starting to wonder if there's not more of that out there than I previously suspected. If you think about it, autonomic neuropathy is extremely common, so much so it hardly registers, given the number of folks we are seeing with adult diabetes and its antecedents

If you cast a broad net on TikTok, yeah you're gonna pick up a bunch of folks willing to believe that the human condition is a disease of some sort. But, I wonder if there's not a nugget of truth to this one. I mean, COVID taught us that fatigue is a thing. Maybe POTS is a thing too, although I still think they should change the name to something less annoying.

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u/Feisty_Offer3907 3d ago

MTHFR mutation. Check folate and homocysteine levels. Can supplement methylfolate

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u/pammypoovey 2d ago

First reading of this is always motherf¥cker. I'm waiting for that to pass.

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u/Total_Discipline_697 1d ago edited 1d ago

Having the mutation means nothing.  You need to look at what caused the upregulation of the mutation - something external outside the body (infection or environmental toxin) caused the mutation to upregulate, due to damaged innate immune defenses.

Just because you have the mutation doesn’t mean it’s active.  You need to test for homocysteine and whole blood histamine to determine methylation status.

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u/Feisty_Offer3907 1d ago

Thanks for sharing. I did not know that. Where can I learn more?

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u/Total_Discipline_697 20h ago

You can join the FB group Mental Health Nutrition.  Also find research by Walsh Institute pertaining to extensive research involving MTHFR, and its connection to mental illness, ADD/ADHD, autism, psychosis.  

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u/Total_Discipline_697 1d ago

The POTS and EDS connection is bona fide, because POTS, EDS, and MCAS share a common gene mutation.  

But it goes beyond that. Apparently POTS is triggered when innate immune defenses become damaged, which would make perfect sense, because POTS is one of the things that those with Lyme Disease and Long-haul Covid have in common, and both diseases are known to go after the innate immune defenses, which in turn causes the upregulation of dormant gene mutations, as well as dormant opportunistic infections like EBV and other Herpes viruses, which would further explain why both those with Lyme Disease and Covid have reactivated EBV

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u/Neuronosis 4d ago

I see tons, management is straightforward. But most neurologists don't.

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u/reddituser51715 MD Clinical Neurophysiology Attending 3d ago

Is the management straightforward? People are walking around with ports and PRN fluid bolus, someone in this thread is mentioning IR procedures on pelvic vasculature, I’ve seen a million cardiac medications tried for it etc. on top of that there seems to be a lot of psychological factors that are often involved.

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u/Practical_Yak_7 9h ago edited 8h ago

There are multiple conditions that can cause POTS (as I'm sure you know), but look into the sleep-disordered breathing connection - I think that's a big one. Upper airway resistance syndrome (UARS) has been shown to cause low BP & orthostatic hypotension. I personally think that POTS is often a compensatory mechanism for the reduced cerebral blood flow that has been shown to be present in most people w/ ME/CFS, even though many do not meet criteria for OH/POTS (my ME/CFS started out w/ just OH-type symptoms early on & I developed hyperadrenergic POTS later) https://www.sciencedirect.com/science/article/pii/S2467981X20300044

Here is a thread on X/Twitter I put together on the connection between UARS & "functional somatic syndromes" (linking to the part about OI - 2nd link if you don't have an account)

https://x.com/PSSD_Info/status/1888394578480287932 https://xcancel.com/PSSD_Info/status/1888394578480287932

Similar thread I made on BlueSky but a bit better than my X one (just not quite as long yet) because I didn't understand that UARS & OSAS are not actually separate disorders in many (most?) cases when I started the X thread. Please share far & wide!

https://bsky.app/profile/nataliezzz.bsky.social/post/3ljvhzfq5bs26

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u/UziA3 4d ago

I see a fair few but POTS is not what I see them for (a lot have comorbid migraine, there are probably some shared pathways)

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u/reddituser51715 MD Clinical Neurophysiology Attending 3d ago

I see the comorbid neurological issues but directly managing POTS is not something I have the bandwidth for. It is such a heterogenous pool of patients that ranges from florid autonomic failure to people with a conditioned fear of standing and deconditioning. If I am concerned for some type of dysautonomia my local cardiology is very happy to take over.

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u/drbug2012 4d ago

I see it more than I want too. And I agree it is waaaaayyyy over diagnosed. Most people I’ve seen who said they have it, don’t. Usually these patients have 35 allergies, 8 different psychiatric forms of anxiety and depression, and are never content with anything

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u/Chemical_Bet_2568 1d ago

Latex and gluten allergy. Lists vertigo and “gastro” (paresis) as diseases. Also has fibro. Incontinent of urine.

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u/CommunityBusiness992 3d ago

PM&R could manage POTS

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u/WhereAreMyDetonators 2d ago

I wish

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u/CommunityBusiness992 2d ago

Yea? I follow a PM&R doc and a lot of her pts are POTS and post covid

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u/WhereAreMyDetonators 2d ago

PMR can have them

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u/Neuron1952 1d ago

Seeing a ton of POTS ( new onset) after COVID infections, all verified by extensive testing. Everyone leaves clinic with a water bottle, salt tabs and compression hose, some with meds.

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u/wpo_ 4d ago

Refer these patients to IR, there’s growing body of evidence in IR literature of overlap with pelvic venous congestion/pelvic venous outflow disease and benefits of pelvic vein treatment for these patients.

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u/Visible_Froyo_5483 4d ago

What are some of the papers you’re referring to?

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u/wpo_ 2d ago

Here you go:

Imaging findings of pelvic venous insufficiency in patients with postural orthostatic tachycardia syndrome

Improvement in chronic pelvic pain, orthostatic intolerance and interstitial cystitis symptoms after treatment of pelvic vein insufficiency

Nonpelvic comorbid symptoms of 45 patients with pain of pelvic venous origin, before and after treatment

Abstract 15621: Pelvic Vein Compression in Patients Diagnosed With Postural Orthostatic Tachycardia Syndrome (Cardiology group abstract)

This was presented at SIR this past week: [Abstract No. 633 Symptom Profiles and Indications for Stenting in Patients with POTS and Pelvic Venous Disease]((https://www.jvir.org/article/S1051-0443(24)01365-4/fulltext))

Here's a podcast with one of the authors of the first three papers

Theres more in the literature if you search around.

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u/Noonecanknowitsme 1d ago

The first paper has ~190 patients to ~25 controls? You cannot take meaningful conclusions from this article. The next 2 articles have no controls. The third abstract is the most interesting, but it’s specifically looking at people with signs of PVI and POTS, then confirming diagnosis with U/S then referring for stent. 

I’m critical when the majority of data in a niche area comes from one researcher (Steven J Smith) because they have a stake in their claims being true and are less critical than a different researcher might be. 

From the links you posted I’d gather that if you are seeing signs of PVI (heaviness in pelvis, swelling in legs, etc) I’d think you’d confirm with U/S and try non-invasive measures before referring for stent.  

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u/GuinansHat 2d ago

Yeah seriously what? There are many of us who fight tooth and nail against "hx pots. Place port for iv fluids" referrals. Ports are not a benign implant non-interventionist think they are. 

Also pots patients are mostly young women and pelvic congestion patients are typically middle aged to elderly so I'd really like to see this lit you're citing.

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u/wpo_ 2d ago

Here you go:

Imaging findings of pelvic venous insufficiency in patients with postural orthostatic tachycardia syndrome

Improvement in chronic pelvic pain, orthostatic intolerance and interstitial cystitis symptoms after treatment of pelvic vein insufficiency

Nonpelvic comorbid symptoms of 45 patients with pain of pelvic venous origin, before and after treatment

Abstract 15621: Pelvic Vein Compression in Patients Diagnosed With Postural Orthostatic Tachycardia Syndrome (Cardiology group abstract)

This was presented at SIR this past week: [Abstract No. 633 Symptom Profiles and Indications for Stenting in Patients with POTS and Pelvic Venous Disease]((https://www.jvir.org/article/S1051-0443(24)01365-4/fulltext))

Here's a podcast with one of the authors of the first three papers

No one said anything about port placements.

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u/GuinansHat 2d ago

No sham rct. I'm shocked. Absolutely flabbergasted. 

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u/wpo_ 2d ago

What sort of disingenuous comment is this? Obviously prospective data would be nice but no one is doing sham trials in any arena. More research needs to be done.

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u/GuinansHat 2d ago

Their conclusions are nebulous at best and spurious at worst with no physiologic explanation. I assure you as IR at a major academics center if you send a refferal for iliac vein stenting for pots 99% of IRs will laugh you out if the room. 

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u/Practical_Yak_7 9h ago

Look into the sleep-disordered breathing/upper airway resistance syndrome (UARS) connection. A lot of people probably wouldn't need ports if we could get this recognized & get people on CPAP/BiPAP. I was able to stop bupropion after a month on BiPAP (took it for 8 years to control my OH-type symptoms on standing).

https://www.reddit.com/r/neurology/comments/1jp69k0/comment/mlnm5pb/

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u/pammypoovey 2d ago

I'm 69. I always thought I was (you know, kind of) special because I had such silky soft skin. That was the plus, I had all kinds of weird shit, too: snapping hip, over extending joints in my knees, elbows, index fingers and funky, painful digestive issues starting in my 20's. IBS came along, and my doc thought that explained the gut stuff sufficiently. The joint stuff was like party tricks.

Imagine my surprise when my son's doc said his umbilical hernia and frequent lifting injuries were from EDS and look where he got it. As his doc noted, it's not like there's much they can do about it. For me, it's nice to understand how it's all one thing, not a laundry list of hypochondria.

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u/[deleted] 4d ago

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u/Flamesake 4d ago

"The legitimacy of most diagnoses", meaning family medicine doctors are making inaccurate diagnoses or patients are telling you they think they have it?

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u/Background-Ad-6279 4d ago edited 4d ago

I don’t think it’s trendy to have pots. Maybe you meant it’s a trend that people who have (what they think are pots-like symptoms) want a diagnosis so that they can get care. Since you, (medicine) have no answers, they’ll generally want to keep digging till they find a diagnosis. No diagnosis means no hope, no treatment. To people who don’t understand what’s happening to their bodies, it’s terrifying, their symptoms are wrecking their lives. These are not people who think it’s trendy to get a diagnosis of POTS.

I think it’s trendy for doctors who don’t know the answers to their patients’s ills to psychologize them, or say it’s trendy or munchausen.

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u/New_WRX_guy 4d ago

Ivabradine does nothing to stop the blood pooling. It simply slows your heart rate so each beat pumps more blood instead of a rapid shallow beat. It just makes you feel a little better and reduces the racing heart rate. I’ve tried it….its ok.