Where to Start - PoTS Subtypes

Hi all, I hope you're all grand 💙

When I first found out about PoTS and when I initially got a diagnosis with PoTS - I really didn’t understand much of it at all. Great, I have PoTS, an answer to how crap I’ve been feeling but what does any of that mean?

I was basically told ‘Here you are your results, some suggestions on how to manage it generally and now off you pop.’ Walking away with this information I have no clue how to navigate the world of PoTS. 

Since my diagnosis in September 2023, it’s only really in the last 6 months that I’ve truly started understanding the complex world of it all and how it can really vary between people. 

We’re always getting told online and by people ‘It varies person to person and not everything will work for you’ - okay, well then how do we start figuring out what works for us?

Over my last 6 years of symptoms and illness journey, I’m now starting to somewhat understand what is needed for my own recovery / management, and hoping even the little bit of knowledge I’ve learnt might be able to help others with their own journeys.

This leads us into what I wish I was told when I was first diagnosed. The various subtypes of PoTS, how they vary and can overlap each other. Below, I go into detail on some of the most common subtypes of PoTS but there are a small variety of other subtypes as well.

Please note: I am in no way a medical professional and what I speak about is my own journey and experience. Please do reach out to a medical professional for further information regarding PoTS or please visit the PoTS UK webpage.

Hyperadrenergic PoTS

Hyperadrenergic PoTS is the elevated levels of norepinephrine within the bloodstream. Norepinephrine is a neurotransmitter within the brain that supports and is essential in the regulation of cognitive function, stress, mood, energy - essentially the ‘fight-or-flight’ response in your body. With these elevated levels, they cause overactive sympathetic nervous system responses. 

Symptoms relating to Hyperadrenergic PoTS:

• Increased blood pressure

• Extreme / high tachycardia (tachycardia is an abnormal heart rhythm which can be more than 100bpm at rest)

• Anxiety

• Sweating extremities while upright

• Heart palpitations

• Nausea

• Vomiting

• Migraines

Tests to determine if you may have Hyperadrenergic PoTS:

• Tilt Table Test - A flat bed, which you lie on, which gradually moves from lying down to standing. This test is designed to see how your heart rate and blood pressure changes when it gradually moves.

  
  

• Urinary Catecholamine 24 Hour Test - This test is to determine if there are continued elevated levels of norepinephrine throughout the day.

  
  

• Catecholamine Level Measurement - A blood test that measures a variety of stress hormones while lying down and while standing. This test is looking to see how these hormones rise upon standing.

Hypovolemic PoTS

Hypovolemic PoTS is the reduced blood volume within the body. This means the body struggles to maintain proper circulation throughout. When your blood volume is low, there is less blood fluid available to maintain steady blood pressure and circulation. This tends to be more noticeable when standing up. This can also lead to blood pooling, which is where the blood collects in the lower part of your body instead of circulation in your body returning the blood to your heart and brain. This can be from weakened vein walls and blood vessels that 

don’t constrict properly.

Symptoms relating to Hypovolemic PoTS:

• Low blood pressure

• Rapid heart rate (around the 30+ bpm jump from lying down / sitting to standing)

• Lightheadedness

• Dizziness

• Near fainting / fainting (syncope)

• Weakness

• Shakiness

• Headaches

• Nausea

• Exercise intolerance

• Brain fog

• Dehydration

  
  

Tests to determine if you may have Hypovolemic PoTS:

• Tilt Table Test - A flat bed, which you lie on, which gradually moves from lying down to standing. This test is designed to see how your heart rate and blood pressure changes when it gradually moves.

  
  

• Blood Pressure Pattern Assessment - After lying down for a while, you measure your blood pressure and heart rate every minute for 10 minutes plus notes on how you’re feeling and symptoms each minute. Then you stand up and do the same each minute for 10 minutes to see how your heart rate and blood pressure changes. 

  
  

• Blood Volume Study - This measures the amount of blood in your body, compared to what is considered the average normal. This study can be done in a variety of ways and depends on what is available to your specialist / GP.

Neuropathic PoTS

Neuropathic PoTS is when the nerve functions within the body are impaired. Particularly with small fibres that are important in controlling the blood vessel constriction and don’t tighten properly. This leads to poor regulation of blood flow and blood pooling in the lower half of the body. 

Symptoms relating to Neuropathic PoTS:

• Low blood pressure

• Rapid heart rate (around the 30+ bpm jump from lying down / sitting to standing)

• Lightheadedness

• Dizziness

• Near fainting / fainting (syncope)

• Weakness

• Shakiness

• Headaches

• Nausea

• Exercise intolerance

• Brain fog

• Dehydration

• Shortness of breath when standing

Tests to determine if you may have Neuropathic PoTS:

• Tilt Table Test - A flat bed, which you lie on, which gradually moves from lying down to standing. This test is designed to see how your heart rate and blood pressure changes when it gradually moves.

  
  

• Blood Pressure Pattern Assessment - After lying down for a while, you measure your blood pressure and heart rate every minute for 10 minutes plus how you’re feeling and symptoms each minute. Then you stand up and do the same each minute for 10 minutes to see how your heart rate and blood pressure changes. 

Deconditioning PoTS

Deconditioning PoTS arises from a period of prolonged bed rest or illness. This then leads to a weakened cardiovascular system within your body.

Secondary PoTS

Secondary PoTS comes from an underlying medical condition. For example, autoimmune diseases, hyper Ehlers-Danlos syndrome (hEDS), thyroid disease, adrenal disorders, Lyme disease, COVID-19 (long COVID), and so on. 

Conclusion

There are lots of other specific tests that can be done to go into even further depths of each subtype of PoTS but this gives a general starting point to tests that can help show a multitude of results. And as these subtypes show, a lot of them can easily overlap and be the cause of a variety of symptoms. But they can help direct us to what may be the root cause to our PoTS symptoms - and from my experience, this is the very important thing to understand. For example, I was diagnosed with PoTS but then I was put on medication that reduced my heart rate, however, this medicine made me feel horrendous with lots of other symptoms because it wasn’t solving the root issue. Which I’ve found out 2 years later that I actually have very low blood pressure. With reducing my heart rate, my body was struggling even more because my heart rate was overworking to get my blood pressure up, which meant I felt even worse. I created a band aid for the high heart rate but had no resolve for the low blood pressure. So that meant my blood pressure now barely rose and my heart was struggling to keep my body active which is what the rest of my circulation system needed. 

And this is why management plans for PoTS can be so tricky and really vary from person to person. It depends on the root cause of why these PoTS symptoms are happening. These test results can help support in directing how your management plan can work for you. You can research and look into methods, such as, medical / herbal / exercise / etc, which can be tweaked and broken down to support your recovery / management. For example, you can have two people which are showing signs of extreme tachycardia, however, one has high blood pressure but the other has low blood pressure. This means there are going to be two completely different methods of supporting their health.

Outro

All I can say is please hold on! Keep fighting for what you believe and if you hit a dead end, take a step back, breathe and find the next road to take. It is such a hard journey with a lot of judgement with it, but YOU know YOUR OWN BODY! You keep going till you find the person who will stop, listen and tell you you're not alone, it’s not in your head and to plan next steps.

If you have any questions at all, please feel free to contact me. I'm always happy to help in anyway or even just have a natter about it all.

If you think / know that I’ve got any information incorrect or have any further information you think may be helpful, please do reach out and let me know - this world of chronic illness is ever evolving and lots to learn.

Thanks for the read! Till next time...