Grace’s story of beating POTS

In my mid-20’s my health started to take a turn for the worse, in so many different ways. My back pain that I had had from my mid-teens started to get worse and I was finally referred to a spinal surgeon for my scoliosis, and at 27 I had a spinal fusion. Following the fusion, my health continued to deteriorate; I suffered from digestive problems, heart palpitations, shortness of breath, near fainting, urinary problems etc. I attended the doctors with my list of symptoms, and following a lot of research, I believed I had the majority of symptoms of Hypermobile Ehlers Danlos Syndrome. I was dismissed at this appointment as having depression, and advised to go away and think about going on anti-depressants. This didn’t sit right with me and I decided to go to the Hypermobility Clinic in London for a consultation, unfortunately I had to pay for this privately. It was at this appointment that everything fell into place. Not only did they confirm that I had hEDS, but also suggested that I had POTS after checking my HR and BP on sitting and then standing.

I was later referred to Dr Gupta at York Hospital and my first appointment with him was THE best medical appointment that I have ever had (and I’ve had a lot!). I cried actual tears of relief when I left, due to being listened to and my concerns being validated. I went through a number of tests in the coming months including a tilt table test, exercise tolerance, EKG etc, and it was then confirmed that I had POTS. Dr Gupta recommended three medications – Ivabradine, Fludrocortisone and Pyridostigmine. Also a magnesium supplement.

Within a few weeks I noticed a HUGE improvement in my symptoms; I was no longer losing my vision and hearing on standing, I wasn’t as breathless, and my heart palpitations and chest pains became minimal. It was then that I realised just how long I had been suffering with POTS without realising. Looking back, I had the same symptoms when I was a teenager and they had often been put down to anxiety, and dismissed by many doctors.

Within a few months of taking the medications, I decided that I wanted to try exercising again, as Dr Gupta explained that this could further help the condition. I started slowly with cycling on a stationary bike, and also throwing in the odd run. I struggled initially running just ½ a mile, but within 6 months I built this up and I now run 2-4miles several times a week. This has completely changed my life, my life is unrecognisable! The medications and exercise also dramatically improved my debilitating fatigue – I was napping daily, but I am now able to get through the day without napping. Yes I get tired, but it is nowhere near as much as I used to! I am able to function and stay at work.

My story may seem straightforward and simple….it definitely wasn’t. Admittedly, it takes a lot of time, perseverance from both you and your Doctor, and the determination to improve the condition. Unfortunately there is no simple cure, but POTS doesn’t have to be debilitating anymore….you can have your life back! Yes, I still have bad days and the symptoms will flair. But it is no longer scary, and I no longer feel alone or a fraud!

Meeting Dr Gupta and finding the right treatment plan has completely and utterly changed my life and I will be forever grateful. It is a breath of fresh air to be treated as a person, to be listened to, and most importantly….to be believed! Have faith that you will find the answers and help, and don’t be fobbed off as being a hypochondriac or labelled as being anxious. You know your own body, listen to it!!

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  1. Cherie 6th February 2020 at 4:59 am - Reply

    Can you put this article to share please

  2. Emma Young 2nd March 2020 at 7:09 am - Reply

    Hello. I have just read this story and feel so relieved there is a happy ending with having PoTS.
    I too struggled through life as being the ‘sick one’ who fainted at times and was generally unwell. I was finally diagnosed with Vasovagal Syncope 2 years ago and am now on medication…..I am better than I was but still suffer and am unable to work.
    Did you an exercise plan in place or did you increase slowly every week?

  3. Deborah Searle 10th April 2020 at 6:11 pm - Reply

    I completely agree with every word that is written. From exercise helping to the tears after seeing dr Gupta. Tears of somebody actually believes me and understands. He even understood about my Heds!
    It has not been an easy path but I am getting there. If I have a flare and I don’t walk the dogs , go to work then I can feel myself going back to where I was.
    It doesn’t happen over night but it’s worth the effort

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