Root cause for POTS

[Sea otter]

Has someone found their root cause for POTS?  

I've done a lot of tests during my search for diagnosis. After POTS diagnosis I tried to find the cause because I feel there is something else going on. As a lot of things were excluded and they didn't find anything after some time I kinda gave up and accepted I will probably never know. I don't have supportive doctor who is willing to "dig" with me for possible causes. There is always some test I didn't do (can't do) - we don't have a lot of tests in my country. From time to time there is question mark above my head with "what if", asking myself I gave up to easily.

[JaneEyre9]

I joined this forum after I was diagnosed with POTS in May 2005 and had the same question. I was completely disabled and unable to continue in my graduate program. It took about 5 years of traditional tests and treating symptoms with drugs that made me worse before I found Cleveland Clinic Integrative Medicine Department. The doctor there told me my root cause was intestinal permeability ("leaky gut") caused by toxic mold exposure, stress, antibiotics and poor eating habits. I was skeptical at first, but I tried her diet suggestions and had a dramatic improvement in symptoms. After a few more years working gradually on my dysbiosis and yeast issues with diet, vitamins, and supplements, I was able to get married and even travel and hike. It's well worth looking into gut health because when you have proteins and bacteria leaking into the bloodstream, the immune system is always on high-alert, developing into autoimmune disease like POTS and thyroid issues. I also discovered I had a chronic, embedded bladder infection (found through MicroGenDX testing). Treating that has improved my stamina even more.

A Genova stool test or a GI Map test may be a good place to start. I'd recommend looking for an MD that practices functional medicine if you want to find your root cause. They are trained to think more holistically.

[Sea otter]

24 minutes ago, JaneEyre9 said:

I joined this forum after I was diagnosed with POTS in May 2005 and had the same question. I was completely disabled and unable to continue in my graduate program. It took about 5 years of traditional tests and treating symptoms with drugs that made me worse before I found Cleveland Clinic Integrative Medicine Department. The doctor there told me my root cause was intestinal permeability ("leaky gut") caused by toxic mold exposure, stress, antibiotics and poor eating habits. I was skeptical at first, but I tried her diet suggestions and had a dramatic improvement in symptoms. After a few more years working gradually on my dysbiosis and yeast issues with diet, vitamins, and supplements, I was able to get married and even travel and hike. It's well worth looking into gut health because when you have proteins and bacteria leaking into the bloodstream, the immune system is always on high-alert, developing into autoimmune disease like POTS and thyroid issues. I also discovered I had a chronic, embedded bladder infection (found through MicroGenDX testing). Treating that has improved my stamina even more.

A Genova stool test or a GI Map test may be a good place to start. I'd recommend looking for an MD that practices functional medicine if you want to find your root cause. They are trained to think more holistically.

Thank you for your response. I already done some stool tests, but don't know exactly what tests. I am from Europe, we are unfortunately limited with doctors who are thinking "outside the box". 

[Neomorph]

On 9/18/2023 at 5:16 AM, Sea otter said:

After POTS diagnosis I tried to find the cause because I feel there is something else going on. 

I know how you feel! I was diagnosed with POTS in May, but I feel like there is more going on with me, too. I have symptoms that just don't seem like they can come from POTS alone, or managing my POTS symptoms doesn't manage these other ones. Unfortunately, my doctor has been very resistant to looking into more chronic conditions/causes with me. I believe I could have Hypermobile Ehlers Danlos - from what I have read, connective tissue disorders like hEDS and POTS often co-occur. I have common hEDS-like symptoms, like cracking/popping joints, easy bruising, joint/muscle stiffness, joint subluxations, and GI issues. It would seem to fit, but my doctor doesn't think so. It sounds like hEDS can be a cause of POTS. I'm not really sure of the mechanism or why it causes POTS. From what I understand - and someone correct me if I'm wrong - POTS is often a symptom of another underlying condition, or if you have POTS you likely have something else as well. 

So in short, no, I have not found the cause of my POTS, but hEDS or connective tissue disorders in general could be worth looking into, depending on your symptoms. I am very new to this POTS/dysautonomia/chronic illness thing. I hope you find some answers! 

[Sea otter]

@Neomorph EDS and MCAS are very common with POTS, but I don't think I have doctors that can diagnose this. I have few symptoms of EDS and a lot of MCAS symptoms - but they are very similar to POTS symptoms. I have found information that a lot of people will never know exact cause of POTS. I had very bad infection before POTS, so maybe this is the cause, but who knows. 

These are possible causes from Dysautonomia International page...

What Causes POTS?
POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations. POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for "Syndrome." Since POTS is not a disease, it is fair to say that POTS is caused by something else. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will not be able to determine the precise underlying cause. When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS. Idiopathic simply means "of an unknown origin."

While researchers are still working to identify the root causes and pathology of POTS, there are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients. This is a partial list:

-Amyloidosis;
-Autoimmune Diseases such as Autoimmune Autonomic Ganglionopathy, Sjogren's Syndrome, Lupus, Sarcoidosis, Antiphospholipid Syndrome;
-Chiari Malformation
-Deconditioning;
-Delta Storage Pool Deficiency
-Diabetes and pre-diabetes
-Ehlers Danlos Syndrome - a collagen protein disorder than can lead to joint hypermobility and "stretchy" veins;
-Genetic Disorders/Abnormalities;
-Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis 
-Multiple Sclerosis;
-Mitochondrial Diseases;
-Mast Cell Activation Disorders;
-Paraneoplastic Syndrome - rare small tumors of the lung, ovary, breast and pancreas that produce antibodies
-Toxicity from alcoholism, chemotherapy and heavy metal poisoning.
-Traumas, pregnancy or surgery;
-Vaccinations;
-Vitamin Deficiencies/Anemia;
 

[Pistol]

5 hours ago, Neomorph said:

. It sounds like hEDS can be a cause of POTS. I'm not really sure of the mechanism or why it causes POTS

@Neomorph It is my understanding that with EDS there is too much collagen in the joints ( hence the hypermobility ) and blood vessel walls ( preventing the vessels from constricting properly ) In order to attempt to pump enough blood to the vital organs the ANS signals for the heart to pump faster = POTS. Since even with this compensation there often is still a lack of blood reaching the brain there commonly will be symptoms of cerebral hypoperfusion = brain fog, FATIGUE, etc. 

[Sarah Tee]

People who have Sjogren’s syndrome and autonomic dysfunction or MCAS and autonomic dysfunction sometimes find that treating their SS or MCAS leads to an improvement in their autonomic symptoms.

But as I understand it these conditions are considered co-morbid with dysautonomia. They crop up together more than statistically likely by chance, and they feed into each other. There’s not enough research to say that one causes the other, or that they are both caused by a third thing. And it will probably turn out to be more complicated than that.

Research is pointing strongly to auto-immune and auto-inflammatory involvement in POTS, but, apart from a tiny handful of cases in which a very sick patient sees a top specialist and gets IVIg or some other immune treatment, there are no clinical applications for regular patients yet.

I don’t have POTS, I have OCHOS. I know my condition is auto-immune (or maybe auto-inflammatory) because it responds to immune-modulating treatments (I got these treatments for something else so this was discovered by chance). But there’s no way to find out what that auto-immune problem is, because they don’t know what to test for. And even if they knew what to test for, they couldn’t fix it, except maybe by IVIg (a general treatment). Well, I will never qualify for IVIg. It is very hard to get in Australia and is reserved for people who are extremely ill (bedridden, in severe pain, etc.) or in danger of dying.

Luckily there are different medications I can take that help a bit, and I’m working through options to find one that makes me feel better without bad side effects.

But knowing the cause of a condition sometimes doesn’t make any difference to treatment options. (Although I do think this will change for POTS in the next few decades.)

Just my two cents’ worth.

[Sarah Tee]

Having said all that, Dr Blitshteyn recently published this interesting article:

https://journals.sagepub.com/doi/10.1177/0961203320988585?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub 0pubmed

And she has this older one looking at autoimmune markers and auto-immune disoders in patients with POTS:

https://pubmed.ncbi.nlm.nih.gov/26038344/

[Sea otter]

@Sarah Tee Thank you for your support and links.

There is so many assumptions with POTS, it's just crazy. Hopefully we will know something more about it in the near future and some things will change for better for all dysautonomia patients.