My journey living with PoTS

I was officially diagnosed with PoTS in 2015 at the National Hospital for Neurology & Neurosurgery. This is one of the only specialist hospitals in the country that has the facilities to carry out these complex tests. I had to complete two days of tests including  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. My blood was taken while I was tilted and my blood pressure was monitored regularly. I was asked to carry out some simple tests while I was in the lying position to trigger the stress response as this can be elevated in certain types of PoTS. 

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 Orthostatic Tachycardia Syndrome, meaning a fast heart rate with change of posture usually from lying down to standing or prolonged sitting. The reason for this increase in hr is due to a problem in the Autonomic Nervous System, the part in the brain responsible for the various automatic functions in the body that you don't have to think about, 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. Not everyone will experience all of them in one time and may only have a few. 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

The majority of these symptoms are improved by lying down and elevating the legs to get blood back to the brain.


My Journey

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. I had many ECG's which basically showed my heart was beating very fast but nothing to worry about. 

My worst Tachycardia episode happened while I was on holiday in Spain with my partner. Our first holiday away together without parents.  I had been walking around in the heat and not had much fluids when I experienced a rapid heart rate with chest discomfort and strange sensations down my face and arm, I felt very unwell and scared that I was having a heart attack due to the symptoms. The hotel phoned for a G.P to assess me as my heart was rapid. 
The Dr was really lovely and gave me a injection in my bottom to try and slow my heart rate two times without success, he left me for a while then came back and it was still rapid, he tried massaging my neck to slow it down but still no improvement, he called an ambulance out and they took me to hospital, I was connected to a heart monitor with pads stuck over me. I was really scared as no-one was speaking English and were all round my bed. 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 G.P came back out to check on me again when we were back at the hotel, he was lovely! I think this was a PoTS episode 

heart ecg

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 thought I would lose my job as I was taking so much time off. 

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 but you trust your G.P to know what is wrong.

When I was on a Pain Management Programme in 2014, 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 another PoTS episode. I also had some funny episodes where the heat would really get to me affecting my brain function and triggering Migraines. 

As from early this year, I am pretty much bedbound needing to be hoisted all the time. Carer's 3 x day. This is not just due to PoTS but other conditions as well. I only go out for hospital appointments or respite stays.

Recently I was upright in my wheelchair for about 2 hours in a warm environment, I didn't want to draw attention to myself even though I was with people with EDS and PoTS, when I started to feel light-headed instead of going to get fresh air straight away, I just had sips of water and pumped my feet up and down, I did eventually have to go by the door as I was feeling very hot. I didn't want to miss out on the talk so I pushed my body further than I should. I felt shattered afterwards and had a lot of pain, which I expected.

The following day I woke up with a rapid heart rate and feeling on edge, I knew I was having a PoTS flare from yesterday, luckily my medication slowed my HR down for a while but then it would return along with chest pain/tightness which was scary, being in a Nursing home I  knew I was in safe hands. The nurses kept monitoring me regularly through the day but had never dealt with PoTS before so after days of suffering, they didn't know how to help me. When getting up to the bathroom my blood would pool, heart race and become short of breath and nauseous, I would have to start using a bedpan. This made a difference to some of my symptoms but wasn't dealing with the underlying problem. One of the nurses thought I was probably dehydrated so started putting bags of water up through my PEG-J which after a while helped my brain feel clearer, we also contacted the Autonomic nurses at the NHNN who wanted my blood tested for infection or anything else and thought it was a great idea about the water. Blood was ok so knew it was sitting up in my wheelchair had caused all these problems. PoTS is very unpredictable, you can be controlled well then something triggers a flare-up which is frustrating. I am waiting for a hospital appointment to see my Specialist as I think my medication needs reviewing. 

Getting a diagnosis of having PoTS was a relief, as I knew it wasn't anxiety like my G.P had thought initially, due to the similarity of symptoms. 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.

  5. Thankyou for sharing this! I don't have Pots, but I run a support group where many do, and I'm definitely going to share this with them! Thankyou for raising awareness for this!


    1. Thank you Amy that would be great if you could share this with your group.

  6. What a relief to get a diagnosis! I hope that you start to find better health down the road and that your POTS journey is a lighter one than many suffer. Hugs! oxox

  7. Yes it was a relief Pamela, even though it took a long time to receive it xx