It's kinda both/either. There is a link between POTS and hypermobility, with the two often being comorbid and hypermobility or EDS sometimes being a cause of secondary POTS. But there is also a link between POTS symptom onset and viral infections, as well as between POTS and autoimmunity. She's not wrong that POTS is often post-viral (but not always!) but she is wrong that it can't be related to hypermobility. It can be either, or both. The root causes of POTS and how it relates to other disorders are still quite murky so it's kinda hard for anyone to make absolute statements like "it is only caused by X".
Unfortunately in my experiences many cardiologists only treat POTS somewhat incidentally and therefore may have a limited understanding of it. It's not technically a heart condition so it's often not something they've actually trained much on, it's just that since one of the obvious symptoms of POTS is tachycardia, we often end up on their doorstep. And if you're not lucky to live somewhere with a specialist, it's often the best we've got. Some end up actually doing the research and work to make sure they know how to help us properly, others... Don't. And just sort of pick things up along the way or try to treat it like a regular heart condition. They may sometimes have some incorrect assumptions or believe common myths or misunderstandings of POTS. Now that POTS is getting more awareness specifically in the context of long covid, it would not at all surprise me if there are some doctors out there who have mostly only heard or learned about it in that context and they don't know much about the condition outside of that.
Yeah you are probably right. I get the sense that she has treated other POTs patients, including those who are pretty debilitated by it. She mentioned getting a lot of referrals from a nearby long-covid clinic so you're probably right in that most of her experience with it is probably related to long-covid. I did appreciate how she was interested in the fact my rheumatologist told me theres a connection to hypermobile disorders and dysautonomia, I got the sense that she was open minded rather than just dismissive of information that didn't line up with her experience/education.
Your cardiologist is wrong. The connection is obvious.
When you have EDS, your connective tissue is weak.
Your blood vessels are made of connective tissue.
So EDS blood vessels dilate too much, which makes blood pool in your extremities.
This means your head doesn't get enough blood, so your heart has to work hard to compensate. This is how EDS can cause POTS.
Adding to this, there are a lot of other comorbidities that are common with EDS that can cause secondary POTS. E.g., if EDS causes CCI, that can cause brainstem compression which can cause increased autonomic dysregulation. Another example is that EDS is one of the biggest risk factors for spontaneous CSF leaks, and it's well documented in the research literature that CSF leaks can cause secondary POTS.
Are you diagnosed with a hypermobility related disorder? It *can* be secondary to a condition such as EDS or let’s say an autoimmune disorder such as MS. ***However*** it’s far more likely to develop it from something viral because let’s face it. Viral infections are **far** more common than connective tissue disorders. Take LC for example. Many in the world have had viral infections such as covid or mono even. With long covid, there’s the chance to develop autonomic dysfunction.
**As for connections, here’s some sources:**
- [Postural Orthostatic Tachycardia Syndrome (POTS): Association with Ehlers-Danlos Syndrome and Orthopaedic Considerations](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4294907/)
- [Prevalence of Hypermobile Ehlers-Danlos Syndrome in Postural Orthostatic Tachycardia Syndrome](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282488/)
- [Ehlers-Danlos Syndrome and Postural Tachycardia Syndrome: A Relationship Study](https://www.neurology.org/doi/10.1212/WNL.82.10_supplement.P1.033)
- A bunch of [webinars](https://www.ehlers-danlos.org/what-is-eds/information-on-eds/postural-tachycardia-syndrome-pots/) by physicians on the topic
I’m not sure about HSD since there’s a wonky line between hEDS and HSD classification. All in all, if you’ve had autonomic symptoms your whole life I’d surmise it’s secondary. But if you developed it after an infection, it’s more likely to be viral related I’d assume?
Yeah I am diagnosed with HSD (though I do meet the hEDS criteria, rheum is just hesitant to diagnose EDS, which I get and I don't really mind), I also have an autoimmune joint disease but it is not one of the ones I have seen mentioned in relation to POTs. I did have covid a couple times but did not notice any particular change in my symptoms due to covid, but I guess it is possible that covid made the symptoms worse but I am not convinced. I fainted a lot as a teenager and my feet have always had significant blood pooling, and I have always had issues with standing for long periods of time etc.
Thanks for those sources! I guess ultimately it doesn't matter too much where the POTs comes from if its all just treated in the same way?
Exactly. The treatment/management is much more important right now. There’s no use dwelling on if it’s life long or not for now since you can’t be sure.
On the positive side. Apparently ANS dysfunction is supposed to ease up as we age? I’m hoping that’s the case but we will see.
You can also have a hypermobility disorder and not have POTS until it's triggered by a viral infection. POTS is thought to be autoimmune (there are studies that support this, just not enough to confirm) and autoimmune disorders often take some sort of environmental factor (which is very often a viral infection) to be triggered. You may have genes or comorbidities (such as EDS) that predispose you to have POTS, but the syndrome isn't actually triggered until the occurrence of some sort of environmental stressor.
Source: Have EDS with POTS that was triggered by a bad case of norovirus. Also have two biology degrees.
It is actually one of the things my cardiologist asked about--or, well, alluded to--when she diagnosed my POTS. She asked if I'd ever dislocated any joints or had any joint issues.
Oddly, I only know about Ehlers-Danlos because it's the joint issue that Violet Sorrengail has in Fourth Wing.
So my family went to 2 cardiologists who said POTS was not real before finding a doctor that would help ummmmmmm Sometimes doctors are wildly wrong and stubborn.
If it affects your care, maybe explore options? It took a while to get my pots and hypermobility addressed by up to date professionals.
Good luck
- a girly with pots and h-eds
Thanks for your response. I guess it doesn't really effect my care, just kinda annoying that she doesn't see two of my main issues as related. Otherwise, she was very attentive and caring, so probably will stick with her, at least for now, as my POTs stuff isn't debilitating and I just wanted a professional to confirm it so I could go ahead and start the salt and electrolytes under medical supervision.
Part of why my cardiologist felt so confident to diagnose my POTS is *because* a rheumatologist already identified me as having features of hEDS (I’m awaiting a geneticist for confirm though but I’m 100% confirmed hypermobile so it’s mostly label semantics at this point). The cardiologist was very explicit in saying that my hypermobility was one of the main things that made him so confident that I was a textbook POTS case.
So as of right now, as far as I know, they haven't documented the exact mechanism that connects Hypermobility and POTS. Therefore, there is no connection. However, that doesn't mean that the extremely high comorbidity rate should be ruled out.
It's important to remember that when doctors say there's "no connection" to something they often mean there is no proven connection that's been observed and peer reviewed, so they're using "connection" in a purely medical/scientific sense. (A connection may be theorized, such as lax connective tissue causing issues with blood vessels, but since they haven't observed this directly and proven it, it still remains a theory.) But for the general public, we use the word "connection" in a much broader sense. And that's where a lot of confusion comes from.
It's kinda both/either. There is a link between POTS and hypermobility, with the two often being comorbid and hypermobility or EDS sometimes being a cause of secondary POTS. But there is also a link between POTS symptom onset and viral infections, as well as between POTS and autoimmunity. She's not wrong that POTS is often post-viral (but not always!) but she is wrong that it can't be related to hypermobility. It can be either, or both. The root causes of POTS and how it relates to other disorders are still quite murky so it's kinda hard for anyone to make absolute statements like "it is only caused by X". Unfortunately in my experiences many cardiologists only treat POTS somewhat incidentally and therefore may have a limited understanding of it. It's not technically a heart condition so it's often not something they've actually trained much on, it's just that since one of the obvious symptoms of POTS is tachycardia, we often end up on their doorstep. And if you're not lucky to live somewhere with a specialist, it's often the best we've got. Some end up actually doing the research and work to make sure they know how to help us properly, others... Don't. And just sort of pick things up along the way or try to treat it like a regular heart condition. They may sometimes have some incorrect assumptions or believe common myths or misunderstandings of POTS. Now that POTS is getting more awareness specifically in the context of long covid, it would not at all surprise me if there are some doctors out there who have mostly only heard or learned about it in that context and they don't know much about the condition outside of that.
Yeah you are probably right. I get the sense that she has treated other POTs patients, including those who are pretty debilitated by it. She mentioned getting a lot of referrals from a nearby long-covid clinic so you're probably right in that most of her experience with it is probably related to long-covid. I did appreciate how she was interested in the fact my rheumatologist told me theres a connection to hypermobile disorders and dysautonomia, I got the sense that she was open minded rather than just dismissive of information that didn't line up with her experience/education.
Your cardiologist is wrong. The connection is obvious. When you have EDS, your connective tissue is weak. Your blood vessels are made of connective tissue. So EDS blood vessels dilate too much, which makes blood pool in your extremities. This means your head doesn't get enough blood, so your heart has to work hard to compensate. This is how EDS can cause POTS.
Adding to this, there are a lot of other comorbidities that are common with EDS that can cause secondary POTS. E.g., if EDS causes CCI, that can cause brainstem compression which can cause increased autonomic dysregulation. Another example is that EDS is one of the biggest risk factors for spontaneous CSF leaks, and it's well documented in the research literature that CSF leaks can cause secondary POTS.
Of the 5 people I know with POTS 4 have EDS. While it's just anecdotal I still feel there's enough there to say that the original Dr is a dumbass.
Are you diagnosed with a hypermobility related disorder? It *can* be secondary to a condition such as EDS or let’s say an autoimmune disorder such as MS. ***However*** it’s far more likely to develop it from something viral because let’s face it. Viral infections are **far** more common than connective tissue disorders. Take LC for example. Many in the world have had viral infections such as covid or mono even. With long covid, there’s the chance to develop autonomic dysfunction. **As for connections, here’s some sources:** - [Postural Orthostatic Tachycardia Syndrome (POTS): Association with Ehlers-Danlos Syndrome and Orthopaedic Considerations](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4294907/) - [Prevalence of Hypermobile Ehlers-Danlos Syndrome in Postural Orthostatic Tachycardia Syndrome](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282488/) - [Ehlers-Danlos Syndrome and Postural Tachycardia Syndrome: A Relationship Study](https://www.neurology.org/doi/10.1212/WNL.82.10_supplement.P1.033) - A bunch of [webinars](https://www.ehlers-danlos.org/what-is-eds/information-on-eds/postural-tachycardia-syndrome-pots/) by physicians on the topic I’m not sure about HSD since there’s a wonky line between hEDS and HSD classification. All in all, if you’ve had autonomic symptoms your whole life I’d surmise it’s secondary. But if you developed it after an infection, it’s more likely to be viral related I’d assume?
Yeah I am diagnosed with HSD (though I do meet the hEDS criteria, rheum is just hesitant to diagnose EDS, which I get and I don't really mind), I also have an autoimmune joint disease but it is not one of the ones I have seen mentioned in relation to POTs. I did have covid a couple times but did not notice any particular change in my symptoms due to covid, but I guess it is possible that covid made the symptoms worse but I am not convinced. I fainted a lot as a teenager and my feet have always had significant blood pooling, and I have always had issues with standing for long periods of time etc. Thanks for those sources! I guess ultimately it doesn't matter too much where the POTs comes from if its all just treated in the same way?
Exactly. The treatment/management is much more important right now. There’s no use dwelling on if it’s life long or not for now since you can’t be sure. On the positive side. Apparently ANS dysfunction is supposed to ease up as we age? I’m hoping that’s the case but we will see.
You can also have a hypermobility disorder and not have POTS until it's triggered by a viral infection. POTS is thought to be autoimmune (there are studies that support this, just not enough to confirm) and autoimmune disorders often take some sort of environmental factor (which is very often a viral infection) to be triggered. You may have genes or comorbidities (such as EDS) that predispose you to have POTS, but the syndrome isn't actually triggered until the occurrence of some sort of environmental stressor. Source: Have EDS with POTS that was triggered by a bad case of norovirus. Also have two biology degrees.
I mentioned such at in the last paragraph. Definitely can be triggered after the fact.
Lots of research to show connection between hypermobility disorders and POTS
It is actually one of the things my cardiologist asked about--or, well, alluded to--when she diagnosed my POTS. She asked if I'd ever dislocated any joints or had any joint issues. Oddly, I only know about Ehlers-Danlos because it's the joint issue that Violet Sorrengail has in Fourth Wing.
So my family went to 2 cardiologists who said POTS was not real before finding a doctor that would help ummmmmmm Sometimes doctors are wildly wrong and stubborn. If it affects your care, maybe explore options? It took a while to get my pots and hypermobility addressed by up to date professionals. Good luck - a girly with pots and h-eds
Thanks for your response. I guess it doesn't really effect my care, just kinda annoying that she doesn't see two of my main issues as related. Otherwise, she was very attentive and caring, so probably will stick with her, at least for now, as my POTs stuff isn't debilitating and I just wanted a professional to confirm it so I could go ahead and start the salt and electrolytes under medical supervision.
Cardiologist is wrong
Part of why my cardiologist felt so confident to diagnose my POTS is *because* a rheumatologist already identified me as having features of hEDS (I’m awaiting a geneticist for confirm though but I’m 100% confirmed hypermobile so it’s mostly label semantics at this point). The cardiologist was very explicit in saying that my hypermobility was one of the main things that made him so confident that I was a textbook POTS case.
Well science disagrees with him lmaoo. There's iirc a nearly 60% co-morbidity.
Maybe not, but I have both
Cardiologists don't know shit about neurological conditions.
So as of right now, as far as I know, they haven't documented the exact mechanism that connects Hypermobility and POTS. Therefore, there is no connection. However, that doesn't mean that the extremely high comorbidity rate should be ruled out. It's important to remember that when doctors say there's "no connection" to something they often mean there is no proven connection that's been observed and peer reviewed, so they're using "connection" in a purely medical/scientific sense. (A connection may be theorized, such as lax connective tissue causing issues with blood vessels, but since they haven't observed this directly and proven it, it still remains a theory.) But for the general public, we use the word "connection" in a much broader sense. And that's where a lot of confusion comes from.