My name is Kathryn Marshall; I am a 38 year old nurse from Swansea South Wales. I am married to Chris and have 3 children, Chloe 9yrs, Harry 7yrs and Erin 5 yrs.
My story begins in March 2011 when I had a minor car accident resulting in a whiplash injury to my neck. In the weeks following the accident I started noticing palpitations and breathless symptoms especially whilst walking up stairs. At first I put these symptoms down to the stress of the accident and being the mother of 3 small children.
However over the next 6 weeks my symptoms got progressively worse resulting in my first collapse at the end of May 2011. Following the collapse I was hospitalised and spent almost 4 weeks on the ward, where I have to say they were very thorough.
I was put on a portable heart rate monitor which showed that every time I stood up my heart rate would go up to as high as 210bpm. At first they thought I had a rhythm disorder called Atrial Flutter but this was ruled out when I had E.P studies (where they try and stimulate an abnormal rhythm by shocking the Heart with a small wire that was inserted into a vein in my groin).
Following negative E.P studies, and the implantation of a ‘Reveal’ device (which is an internal cardiac monitor), a diagnosis of POTS was suggested, but although the Consultant that I was under had heard of POTS he did not know the best treatment so I was referred to a specialist in London.
During my wait for an appointment to come through I experienced many more collapses and lost all confidence in myself. I was unable to work or fulfil my role as a mother. I relied totally on my husband and family for help. My days were spent lying on the sofa as I hated the feeling of standing up, I would not go out due to the threat of collapse and the fatigue was overwhelming.
The guilt I experienced from not being able to be a ‘proper mummy’ to my children was terrible which resulted in me having a very bleak outlook on my condition and what the future would hold for me.
The appointment came through for Autonomic function tests at a London Hospital in September 2011, which finally gave me the definite diagnosis of POTS and low blood pressure. I was informed the cause of the condition was the car accident that I had experienced, as trauma can trigger Autonomic Dysfunction.
I was started on Beta Blockers and Fludrocortisone at my first appointment which helped to slow my heart rate down but did not help to raise my blood pressure, so I was started on Midodrine a few months later.
In November 2011 I started the cardiac rehabilitation programme at my local Hospital which I found excellent, not only did it get me out of the house but it also gave me the chance to talk to an Occupational Therapist about how I was feeling. She was very supportive and made me see that having a Chronic illness did not mean that life had to stop, just the way I lived my life had to change slightly, so I could still do things I wanted to do just in a different way.
I also got the chance to do light exercises in a controlled environment, I am not going to say this was easy as it was very challenging but considering I had laid on the sofa for months it was a huge achievement for me.
Now in January 2013 I am still symptomatic, some days worse than others, I try to do ‘normal’ things on the days I feel well. I am currently waiting to go back in to hospital in London to start a new drug Ivabradine which fingers crossed will be the drug that really helps me. My outlook on life now is much brighter and my confidence is improving, I have returned to work 2 days a Week doing clinic work so mainly sitting down.
From my experience of POTS I think I have been very lucky to have been diagnosed relatively quickly and was never told that my symptoms were psychological which I know many patients get labelled with. Let’s hope that in the future POTS becomes more widely recognised as a condition so people get the treatment they need and deserve promptly so quality of life can resume.