Helen
Hi, my name is Helen & I’m 31 years old.
My PoTS symptoms started when I was unwell with Covid in March 2020. I remember feeling faint, having palpitations and my chest felt tight. I put all of this down to being ill and having a fever which I had for around 2 weeks.
I am an occupational therapist and returned to work pretty quickly (hindsight is a great thing) but the pressure was on and I was keen to do my bit.
As the months went by my symptoms continued and I felt lightheaded whenever I moved. I’d be walking on the ward at work feeling faint (but thankfully never did). I’d feel my heart racing and would feel breathless by the slightest thing. I thought it would just go away.
I continued spending my days trying not to faint and tried to hide how awful I was feeling but this was difficult to keep up.
In July 2020, I had my first “crash” and was sent home as my blood pressure and heart rate were quite high. Blood tests showed I was anaemic so I was given iron tablets and told to call back in 3 months if I wasn’t better. I was off sick for 2 weeks and returned on “lighter” duties.
When the 3 months were up, my GP referred me to a local hospital as I was still feeling pretty terrible.
I had many tests including a tilt test and 7-day ECG monitor. The cardiologist felt that I didn’t have PoTS although my symptoms were similar. I was started on bisoprolol in February 2021 and I had around 2 weeks where my PoTS symptoms subsided.
Unfortunately, this was short lived and at the end of March I had my biggest and worst relapse.
The simplest task was difficult.
My light-headedness, palpitations and chest pain were the worst they had ever been. My gastro symptoms worsened as did my temperature regulation. It is so hard to explain the feeling of having absolutely no control over your body and just feeling lost. The simplest task was difficult. Standing to make a cup of tea would make me feel faint and my heart would be pounding as if I was running.
I had more tests and my medication was changed to propranolol.
This helped slightly but I still couldn’t really function. “I feel fine if I don’t move” became my motto.
I did some research and looked on the PoTS UK website and thought that the symptoms sounded exactly like what I was experiencing.
I decided to start the lifestyle changes drinking 3L, upping salt and wearing compression leggings. I also started the Levine exercise programme. This is difficult because of post exertional symptom exacerbation. I have been doing the exercise programme for nearly 20 weeks now but I am still on week 4. However, I have finally learned that listening to your body is key.
After 6 weeks, I noticed a little improvement. I also arranged a private consultation with a PoTS specialist who confirmed that I do have PoTS.
I’m still taking propranolol and other medications which seem to be helping. I’m currently in that unnerving position of wondering if this is just a fluke or true progress and not wanting it to end.
Return to work
I have just started a phased return back to work. One of the most difficult parts of living with PoTS is the uncertainty. Will I be able to do my job anymore? It is so hard to not be able to do things that I used to do so easily. However, I am finally learning my limits and feel like I have more control than I did a few months ago.
My main goal at the moment is to return to work. I’d also love to be able to walk around the block or a shop. These are activities that are still uncomfortable but hopefully soon I’ll be able to add them to my list of achievements. I have started writing these moments down because it can be hard to see progress when it is so small.
I am aware that I’m lucky as it only took me 16 months to get an official diagnosis. I have also received great medical care throughout and I’ve not been dismissed as being anxious. I’m hoping that there will be some positives that come out of the pandemic and hopefully this includes more awareness of PoTS and other post viral conditions.