My Experience with PoTS and finally getting a Diagnosis

heart beat

I was officially diagnosed with PoTS in 2015 at the National Hospital for Neurology & Neurosurgery, after completing two days of various tests, which included 24-hour blood pressure readings and a tilt table test, which is the main test used for diagnosing PoTS. 
The tilt table test confirmed I had a high resting heart rate and blood was pooling in my lower legs and feet, I was unable to cope with more than 10 minutes of the tilt as I had chest discomfort, due to a fast heart rate so they lowered me back down into lying, where I felt much more comfortable. They took my blood while they were doing the test and my blood pressure was monitored regularly. I was asked to carry out some simple tests while I was in the lying position. 

For those of you who have never heard of PoTS, I will explain briefly about it, however if you click the link it will take you to another post explaining in more detail. PoTS stands for Postural Tachycardia Syndrome, meaning a fast heart rate with change of posture. From lying to standing. It is caused by a problem in the Autonomic Nervous System, the part in the brain responsible for the various automatic functions in the body, such as heart rate, blood pressure, breathing, temperature, bladder, bowels etc. In PoTS this function is not working properly and therefore causing a whole range of symptoms. The simple act of standing can be a challenge for people with PoTS as their body is unable to adjust to gravity. Some of the symptoms experienced are:

  • Palpitations
  • Fatigue
  • Headache
  • Sweating
  • Nausea
  • Dizzyness
  • Fainting
These are relieved by lying down.


Prior to getting my PoTS diagnosis

I had been having fairly severe episodes of tachycardia, light headedness, heat intolerance, nausea and various other unexplainable symptoms for many years, which resulted in me having to attend my local hospital and Dr's surgery on a number of occasions. 

My worst episode happened while I was on holiday in Spain with my partner. I experienced a rapid heart rate with chest discomfort and strange sensations down my face and arm, I felt very unwell and the hotel phoned for a G.P to assess me as I thought I was having a heart attack. 
The Dr was really lovely and gave me a shot in my bottom to try and slow my heart rate two times without success, he came back and it was still rapid, he tried massaging my neck to slow it down but no improvement, so he called an ambulance out and they took me to hospital, I was connected to a heart monitor with all these pads stuck over me. I was really scared as no-one was speaking English. Then I had a tablet put under my tongue and they left me. 
I kept looking at what my heart rate was doing and it was going up then down. They discharged me after a while, saying it was a panic attack and being in the heat. The weather was hot and I had been walking around with not much water. 
The G.P came back out to check on me again when we were back at the hotel, he was lovely!

I had many more strange episodes following this when I was back home and trying to work. The symptoms would just come out of the blue and my chest would feel heavy and my heart would race, I had to call a taxi to take me home on a number of occasions while I was at work. I started worrying about going to work in case it happened again.
I saw my G.P who said it was Anxiety and prescribed beta blockers to slow my heart rate, every-time he did my BP and heart rate while sitting it was ok, however if he had done it while standing, it would be different. I knew it wasn't anxiety and that something else was going on.

When I was on a pain management programme, I was getting out of the pool when my legs kept collapsing on me, luckily I had an assistant helping me as I started feeling lightheaded and nauseous and on the verge of passing out, thankfully my physio saw and walked with me to the cubicle and I was taken back to the ward to be monitored. I am sure this was a PoTS episode.

My Experience living with PoTS

Getting a diagnosis of having PoTS was a relief, as I knew it wasn't anxiety like my G.P had thought initially, however it has had a big effect on my quality of life and friends and family.
I suffer from extreme fatigue on a daily basis, just from doing simple things like walking to the bathroom or getting dressed. This means that I have to make sure everything I do is paced with plenty of rest in between.   

My temperature regulation is poor, I am either very hot and start feeling unwell quite quickly, or very cold and find it hard to warm up.
I have to make sure I drink lots of water and electrolyte drinks throughout the day but particularly before getting up in the morning, I have between 300-500ml of water and have to do heel pumps before I get up and after having been sitting down, these are so important for getting the blood back to the brain. 

After having a bath, I feel extremely exhausted and need to lie down for at least 1 hour to recover, even though I have an electric bath lift, the heat of the water and the energy used for washing takes it out of me. I get pooling of blood in my lower legs and feet, which go purple coloured quite quickly after getting out.

I was encouraged to purchase my own BP monitor so I can keep a check on my heart rate, instead of going to my surgery for this. 

Exercise is really important for people with PoTS, to help with the circulation, however it is very difficult to do and needs to be in sitting or lying, I have hydrotherapy weekly, due to land physio taking too much energy out of me, however this is not the best solution for someone with PoTS due to the heat, my therapist is fully aware and makes sure I am having my hydration drink regularly and doing calf pumps, also nothing in standing position to help with my symptoms. 
I have had a few attacks there when coming out the water, blood has pooled quickly making me feel weak and shaky. They use a special hoist to get me in and out as I would not be able to use the steps. 
My physiotherapist specialises in cardio-respiratory, so I know I am in safe hands, when she feels my heart racing, she will take me to the side and get my drink and let me rest for a bit.

Other than medical appointments, I rarely go out anywhere, I always use my wheelchair if I do due to my symptoms.
This is a very debilitating condition and extremely difficult to treat. I am on a prescribed medication 3 times daily but it doesn't really make a lot of difference to my symptoms.

PoTS doesn't just have an effect on my heart but my stomach as well, eating is difficult due to severe nausea everytime, making mealtimes a nightmare. I am unable to eat big meals only small ones and needs to be more like soups that are easy to digest than solid foods, that stay around in the stomach for longer.

Feel free to share your experiences of having PoTS          
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  1. Thanks for sharing all of your symptoms and experiences. I'm pretty sure I have PoTs, but don't have a doctor to diagnose it. I need a new GP, because mine has never heard of pots. I do have EDS, Mast Cell and autoimmune problems.

    1. sorry to hear you may have this as well but not been diagnosed. mine had never heard of it either. It is not right that we have to tell these Dr's what to do. I may have mast cell as well but not sure yet.

  2. It must be a relief to finally have your diagnosis and know for sure what is going on. POTS is such a difficult illness to live with and one misunderstood by many so thank you for sharing your experience.


  3. Thank you Donna, it is a relief but so difficult to live with.

  4. Emma, this is a great article which I will be sharing with friends and family - so similar to my experiences. I am definitely getting worse at the moment, but at the beginning of the drugs journey!! Fluids, fludrocortisone & compression tights have made little difference. Don't know about you, but every time I go over I dislocate something - today I feel like I've been stretched on a rack after a couple of faints and shoulders & hip going! Thank you for this - I will share, Claire x

    1. Thank you Claire, I am not finding much improvement on Midrodrine but seeing specialist in April. I am lucky I have not actually fainted but get very tired, short of breath, pooling, rapid heart rate and nausea.