Becky: If it wasn't for the darkness we wouldn't see the stars
I am 23 years old initially was diagnosed with low blood pressure and syncope in 2012, and this year my diagnosis was changed to PoTS as I have Tachycardia as well.
The first day of my illness started like any other. It was 13th February 2012. I got up, got dressed and headed to work. As always, I arrived in the office at 8:20am then at 9:30am I took my break heading for the stairs to go down to the canteen for my breakfast. I suddenly came round at the bottom of two flights of stairs with two co-workers asking me if I was ok and asking what had happened, a question which haunted me for over 2 years as I was consistently told I had low blood pressure and in 2014 I finally got a diagnosis of PoTS.
From that day, my life was never the same again. I spent weeks in and out of hospital with no explanation about what was happening to me. I was constantly at A&E to be checked over due to my blackouts occurring uncontrollably anywhere at any time causing me serious injury. In between being in and out of hospital, I attempted to carry on with my life. Unfortunately this became very difficult, not just for me but for my boyfriend Jem, my mum, my family and pretty much anyone that I came into contact with. At work I had a very supportive manager who did everything he could; including allowing me to work from home, however my condition took over and things couldn’t carry on I had to give my full time job up. Working early mornings was a problem as initially getting up was a problem as this was the worse time for me.
My blackouts began to happen more often which hit me like a ton of bricks. It would be worse in the morning after a restless sleepless night and even getting out of a sitting position wasn’t safe. My main triggers were after a big meal, being in a hot environment and prolonged sitting and standing. I spent my 20th birthday in bed as I had been bed bound for almost 2 weeks with severe headaches and fatigue. My anxiety about having a blackout worsened when I began to experience palpitations. I go to the gym and mainly swim or light exercise. I drink lots of water to ensure I’m not dehydrated, sometimes it hard to see my friends going out having fun, especially when I know late night, tiredness or standing/sitting for too long affects me.
I am aware my condition is quite different to many symptoms I’ve read. I do not know when I am going to have a blackout, I have no symptoms beforehand, and I have no memory of it happening. During the time of the blackout I have been told I have seizure symptoms, (Epilepsy was also ruled out). Although I still have the same body aches and tiredness
Once I do regain consciousness I am in a post ictal state, I cannot communicate and unaware of what is happening. On coming out of the post ictal state, I cannot remember anything, all I know is I feel like I’ve been run over by a bus and that I’ve lost anything from 10 minutes to 4 hours of my life; this began to be very hard to live with.
I could never be alone, something which affected me massively as I was a very independent person, I lost my confidence to do anything, I was housebound and not a nice person to be around, my days started with blackouts sometimes from initially getting out of bed, I couldn’t stand in the shower for too long as it also happened there as well. My bedroom was moved downstairs as stairs were a massive fear of mine; I have lost count how many times I have had a blackout coming down them. I began to move around the house by crawling, at one point I was even confined to a wheel chair because my fear was so bad; it had taken over my life.
One of the hardest things was the numerous doctors unable to explain what was happening to me. The lowest part of my journey was being told that I was having Pseudo seizures. I couldn’t understand why I was being told that this was all in my head. Naturally my mother and I refused to accept this diagnosis, and asked for a second opinion. I was seen by Dr Mohanraj a Neurologist from Salford Royal Hospital; this changed my life offering the chance to put my life back together; I felt I was on the right track for the right diagnosis.
Dr Mohanraj referred me for a tilt table test which confirmed PoTS and my drop in blood pressure; this was the start of better things to come. Things were very up and down at this point as I was trailed on numerous medications, one in particular was fludrocortisone which in the beginning seemed like it was helping, but we were wrong; all it did was make me put on a ton of weight. As a neurologist there was only so much he could do, when we hit a brick wall he referred me to a Syncope specialist Dr Adam Fitzpatrick at Manchester Royal Infirmary.
I now have a ‘Reveal LINQ Cardiac Monitor’ which monitors my heart along with being on Midodrine and Propranolol this offers me a better quality of life than I previously had. Over 3 years ago I would have never have put myself to be where I am now. With the right medication, support and adapting my diet and of course listening to my bodies needs my PoTS is manageable. This isn’t to say it isn’t still hard sometimes but things will always get better.
I began a course as a NSI Nail Technician, which I passed; I now work in an established salon working the hours I want which suit me and my PoTS.
Something that has always stuck with me and helped me stay positive is the wise words of an elderly patient I began friendly with during one of my many stints in hospital, ‘If it wasn’t for the darkness we wouldn’t see the stars’
I wouldn’t be where I am today without the endless love and support of my family, friends and especially not without my mum or my boyfriend Jem.
Stay positive as things will always get better.