Blood Pressure & PoTS

Hi all, I hope you're all grand 💙

Today I’m going to be writing about the importance of blood pressure (which I’ll mention as BP throughout this blog) within the world of PoTS (Postural Orthostatic Tachycardia Syndrome).

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 your health or please visit the PoTS UK webpage.

Importance of Gathering & Understanding Your Body’s Data

When I was first ill in March 2020, all I very much only understood in those first few years is that I’m ill, I have these symptoms, no doctor is taking me seriously and that I’m lost and lonely. I very much relied on various GP’s telling me that I was anxious, depressed and needed to eat healthier. However, deep within my bones I knew this wasn’t the case, especially after being put on many antidepressants that unfortunately made me incredibly ill and broken further. Please do understand that I don’t think antidepressants do not help, I however believe that we should take the time to really understand what is happening with our bodies so that we can be put on the right medication / medical support / management plan that will support the health issues we are living with.

It’s only really from the 4th year living with these symptoms and health conditions that I truly understood that I was the master of my own illness, I am the only person who can really record what is happening and I only really have myself to gather the data to prove that certain systems within me are not working correctly, which then came the next year of diving into my health further, studying, finding similar stories to mine and gathering as much data as I possibly could. In everything we do in this world, data is the most vital thing that gives us markers to work on, and I realised the power the data of my body held.

I then dived down the rabbit hole of what data points I should start recording for the symptoms that fall within PoTS and my own health.

Why Blood Pressure Matters with PoTS

BP can be a major factor for why PoTS symptoms are happening in the first place and is very commonly overlooked (especially if you have low BP). Some people who have low BP may never get any symptoms, however, others who do have low BP, may experience a whole variety of symptoms. Each body works in wonderful ways, and it’s important to understand the impact of different systems in our bodies and what those measurement points are for ourselves.

A lot of the time, if our BP is low, high or variable this can be a starting point of why lots of other symptoms are happening. For example, I’ve learnt that I have very low BP and because of this, my heart rate works overtime to try and keep my BP up. I use to hate my heart and thought it was the reason for why I was feeling the way I do, but I’ve come to recently learn how powerful and strong my heart is to try and keep my BP up somehow to keep me alive.

What is Blood Pressure?

Now to the main question! What is BP?

BP is the amount of force your blood uses to get through your arteries. When your heart beats, it’s pumping blood into a large artery called the ‘Aorta’:

Photo from Univeristy of Florida Health

BP is constantly changing depending on what you’re doing (lying down, sitting, etc.), eating (sugary or salty foods), fluids your drinking (water, energy drinks, coffee, etc.) and many other factors.

Hypertension (High Blood Pressure)

Hypertension is when the pressure in your arteries is too high (around 140/90 mmHg). Symptoms can include:

• Weakness

• Heart pain

• Chest pain

• Change in vision

• Difficulty talking

Hypotension (Low Blood Pressure)

Hypotension is when pressure in your arteries is too low (around 90/60 mmHg). Symptoms can include:

• Nausea

• Lightheadedness

• Dizziness

• Fainting

• Blurred vision

How to Measure Blood Pressure

A BP test measures how hard blood is pushing against the walls of arteries at 2 moments and what that pressure is. These 2 moments are when the heart is at rest and when the heart is pumping blood out.

A BP test will have two readings:

• Systolic: Pressure in the arteries when sending blood into the arteries from the heart while the heart is beating.

• Diastolic: The pressure in the arteries when the heart is at rest between beats.

  
  

The BP ranges are measured in ‘millimetres of mercury (mmHg)’ which is how pressure is measured. It comes from a test that measures the pressure on how high a column of mercury rises.

The below image gives an idea on where BP ranges are but please do reach out to a healthcare professional if you have any concerns.

Starting Points to Manage Each Blood Pressure Type

How to start managing hypertension BP:

• Start by incorporating healthy, balanced diet (reach out to a medical professional / dietitian to find a diet that works best for you)

• Start gradually exercising and aim to make it regular

• Manage your weight

• Do not eat too much salt

• Reduce alcohol intake to no more more than 14 alcohol units a week

• Do not drink too much caffeine – drinks high in caffeine include coffee, tea and soft drinks

• Do not smoke
  

Further information can be found through the NHS hypertension page.

How to start managing hypotension BP:

• Start wearing compression garments (there are a variety of levels of compression, I normally wear RAL Class 2)

• Start drinking electrolytes (that don’t include glucose) and increase salt intake

• Drink around 3 litres of water per day

• Start slowly exercising which includes, isometric exercises, aerobic exercises, yoga, pilates and floor exercises

Further information can be found through the NHS hypotension page.

You can also get medication to support with each of these (however, unfortunately low BP does not have many options and support as of yet). You will need to discuss with your medical professional about medication options. One thing I recommend for low BP medication is to try and understand, is your low BP from your arteries not creating enough pressure or from hypovolemia (reduction in blood or plasma volume in the body). Both can show as low BP on BP tests.

How to Gather BP Data

I gather BP data by doing a lying down and standing up 20 minutes test, twice a week.

Before I get out of bed, I drink 500ml of water with electrolytes when I wake up and do 10 minutes of box breathing to help relax my nervous system from the multiple adrenal dumps throughout the night. This helps reduce the amount of shock my nervous system will feel for when I stand up. I then use a BP measuring cuff (as shown in the below photo of the BP cuff I have) while I’m laid down and measure my BP & heart rate (which most BP measuring cuffs will do) every minute for 10 minutes and write what symptoms I feel each minute (I usually use voice to text for this part). I do this before I get out of bed. For the next 10 minutes, I then stand and take my BP & heart rate for each minute of the 10 minutes and write what my symptoms are each minute. Over the next month or two, you’ll start having a sheet of data which will show you valuable reading points and any patterns that are happening with your symptoms and body’s systems.

Below you can find a photo of the template that I use for gathering this data:

Conclusion

Overall, BP may not be causing an issue with your PoTS at all, but it good to gather and understand your own body‘s data so you can understand what is happening to your body. I never understood the importance of BP in my body until 4 years down the line and realised the huge impact it has on me every day! All my symptoms are happening because my BP is so low. I’m now on a journey to figure out why my BP is so low but that’s a story for another day.

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...