I recently had some kind of ‘episode’ or ‘seizure’. It was something I had not experienced before and it was terrifying. It started with an intense pain in my heart and then the feeling that my heart had stopped. Seconds later I had the feeling of heat rushing through my body and was almost certain my head was about to explode. When it had subsided I got the never-welcome temporary paralysis that has been a constant over the past five years. It is times like this that make it almost laughable that most people think of M.E. as ‘just tiredness’. I avoid going to the doctors as much as possible but it was clear that I needed to get myself checked out.
It has taken a long time for a GP to take me seriously about my concerns about my heart. Back in 2010, after my diagnosis, my concerns were met with laughter and the helpful “at least it’s still beating.” I am most certain that had I not had the M.E. label I would not have been treated so poorly. The GP that I have had for the past year or so has been a most welcome change from the five or six others I have seen since my M.E. journey began. Most notably she doesn’t make me cry!
She wanted to do an ECG (electrocardiogram) and then a 24 hour ECG. The fact that she didn’t just discount my concerns as being all in my head meant more than anyone will ever know. With the 24 hour ECG, I was asked to press a button on the small machine every time I felt pain or palpitations. I pressed it quite a lot.
The results were practically clear. Nearly every time I had pressed the button to highlight heart pain or ‘gaps’ in my heart beat the results showed nothing at all. Yet another clear result making me feel like I am going insane. While there were slight abnormalities here and there they were nothing to be worried about and suggested that I could have an ectopic heartbeat.
Rather than just send me on my way like every other medical professional has done, my GP still believed me when I said I had been experiencing pain in my heart. We talked about coming off either the citalopram, which has reduced my brain fog dramatically, or the amitriptyline, which has stopped the restless legs I get at night and helped me sleep better on the whole. I’m not keen on coming off either of those just now so we decided to start with the very low dose of propranolol that I started taking for both the palpitations and anxiety.
The pain in my heart has decreased and perhaps even stopped. The palpitations and ‘gaps’ in my heart beat have ceased. Alas, a resting heart rate of 117bpm isn’t normal. I’m keeping an eye of it while trying not to focus on it. I know many of you will ask if it have PoTS (Postural tachycardia syndrome) but I don’t believe I do and it has never been suggested by my GP.