Living with POTS: Back to the start

I've realised recently just how unknown POTS is. Unless you know someone with it, you probably have no idea what it is and even when you know...you don't really know. As such...I thought I'd do a couple of posts about what is is, where you can find out more info, how it affects me day to day and the like. So first off...symptoms and diagnosis. 

It was around 2006/2007 when I first started having episodes of fainting - my GP and the paediatrician we saw put it down to my height and therefore my blood pressure dropping when I was stood. Quite a logical solution and I was told it'd improve with time - which it did. However, I still seemed incredibly prone to fainting and once at University they realised my postural drop and resolved yet I was still having these faints. In September 2011, I was generally unwell and had multiple collapses over the course of a few days. During which I hit my head. After CT and MRI scans I was transferred to the local neurology specialist as my scans were abnormal. However, this turned out to be due to having hit my head rather than any epilepsy etc. During this time they established that there was something more than "just" a simple faint going on and it was noted that I was tachycardic (had a high heart rate) the majority of the time. They told me that I was having psychogenic seizures and needed psychological help. This was absolutely devastating - having worked really hard to recover from an eating disorder to be told I was going crazy was a kick in the teeth. I was sure there was more going on and thankfully, a registrar at my local A+E listened to my symptoms, saw the impact that standing had on my heart rate and referred me to cardiology. 

Getting a diagnosis is an incredibly long process, I had an echocardiogram, multiple ECG's, a 7 day cardiac tape, exercise tolerance test and finally a tilt table test. I was then started on a small dose of propranolol to try and slow my heart rate - a dose which has increased hugely since and still sometimes fails! A positive tilt table test is the easiest way to confirm a diagnosis of POTS but there are a variety of tests which you can read more about here. I was finally diagnosed in August 2012 and it was a huge relief to know that I wasn't going crazy!

Looking back, I had symptoms of POTS throughout my teenage years, but these have become far more pronounced since September 2011. POTS can have a number of causes but my Mum recently pointed out that during my teenage years I had a really bad flu that wiped me out for weeks and took months to fully recover from. Looking back this could well have been a trigger! I've also had an autoimmune problem with my thyroid in the past and there is suggestion that autoimmune problems can contribute. 

So what about symptoms?

I am slowly discovering that many things I experience in everyday life are actually symptoms of POTS - it all feels a bit like a jigsaw at the moment! There is the obvious tachycardia with palpitations, inability to stand still for long without passing out. I have a tremor, mainly down my right side and suffer from brain fog on bad days. I am fatigued with only slight exertion and I sleep far more than a person my age should. I take anti-sickness medications up to 4 times a day as eating and drinking can make me feel sick. I don't regulate my body temperature, my blood sugars or my blood pressure particularly well. I am heat and exercise intolerant and always thirsty. I often have chest pain and my joints can get quite sore. And the list goes on. Some of these are possibly symptoms of wider autonomic dysfunction. I've finally found a great GP who is starting to look at the wider picture and we're beginning to isolate what causes my symptoms to flare and also what helps to keep things on a more even keel...which shall be the focus of my next post!

TTFN x