A bit about POTS...

POTS - I have referred to it in previous posts, as it is the medical condition I was diagnosed with a couple of years back and has significantly altered my lifestyle, our ministry focus, been a huge challenge to our marriage, and 'trial' in which I have learnt and continue to learn a lot of new perspectives on what it means to grow in my trust in God alone.

So I thought it might be helpful to explain a little more about this condition...

P Postural

O Orthostatic

T Tachycardia

S Syndrome

What is it?

The short simplified answer is that it is a Syndrome (means something with many symptoms) that is characterised mainly by the fact that my heart rate is too fast (Tachycardia) when I am in a posture (Postural) of being upright (Orthostatic).

It is a form of Dysautonomia - which means that the Autonomic Nervous System has malfunctioned.  The Autonomic Nervous System is that part of our bodies that controls everything we don't have to think about such as - 

- heart rate

- blood pressure

- body temperature

- digestion

- pupil dilation

- perspiring

etc etc

Symptoms of POTS are many and some people have more than others or have some worse than others:

• Excessive Fatigue
• Exercise Intolerance
• Recurrent Syncope or Near Syncope
• Dizziness
• Nausea
• Tachycardia
• Palpitations
• Visual Disturbances

  • Blurred Vision
  • Tunnel Vision
  • Graying Out

• Tremulusness
• Weakness - most noticeable in the legs
• Chest Discomfort
• Shortness of Breath
• Mood Swings
• Migraines and Other Headaches
• Gastrointestinal Problems

Here are some good links for more information on POTS

WorldLingo

NDRF

So I spend the most part of my life now, in a horizontal position on a day bed with my computer propped up on a special stand over the top of my legs.  And I have a recliner-wheelchair that I can use for outings or spending some time in the garden (our animals enjoy me in 'their world' and often come to be near me when I'm outdoors), so I can 'go horizontal' any time I need to.  I also wear a heart rate monitor so I can tell if my heart rate is getting too high by sitting up or standing up for too long.  Always sitting to have a shower and always having someone else wash my hair are part of daily life now.  Avoiding hot showers and hot weather are priorities. 

It is unknown just how long I will have this condition although it is thought that it is mostly not permanent.  My POTS was probably caused by the 'after effects' of a virus and my body will take a while to 'heal'.

I was amazingly diagnosed fairly soon after the onset of my POTS as within a few months of becoming very debilitated with no energy, shortness of breath, horrible headaches and some other weird symptoms, my local doctor realised my pulse was racing and all I was doing was sitting up in bed talking to him!  He immediately sent me off to see a Cardiologist.  On my second visit with the Cardiologist, he began talking about Dysautonomia.  And that set the wheels in motion for me to do some further research.  He was also in communication with other doctors internationally who advised him that due to my test results and the fact that I had had ME/CFS in the past, the normal medications a doctor would try, weren't worth trying as they don't work on patients like me and cause more trouble with side effects than what they would aim to achieve (and not achieve).

I thank the Lord for His amazing blessing of a wonderful and helpful Cardiologist here on the edge of the Kalahari Desert.  Dr Bhagat is one of the best doctors my husband or I have ever encountered (and between us we have encountered quite a few over the years!) And he is just a 10 minute drive down the road and doesn't charge 'an arm and a leg'...and his clinic is actually wheelchair accessible!

He has worked with us and us with him in all kinds of things to do to give my body the best chance of recovery.