My Heart Stutters:
The Tale of My Arrhythmia Part 1
First some backstory:
I always knew there wasn’t something quite right about me, about how I would randomly lose conciousness. It’s been that way since I was an infant. Doctors said it was epilepsy and that I’d grow out of it. Then when these “episodes” vanished for a time they felt that had happened. I remember how reluctant they were to say the word epilepsy when my attacks started up again after the stress of finding out my one and only friend was moving away. I was about 10 at the time (Didn’t help that the scum who called himself my father lied to the consultants).
Again they went away for a time when things in my life seemed to have settled and again they came back. So in 2019 I saw a nuerologist. He tried to convince me these were anxiety attacks, but the ones I had prior to the appiontment had not been in any situation that made me anxious. I was stressed but not anxious. So in the September of that year I had an EEG (electroencephalogram). The results of which I don’t know. They never contacted me after that.
Fast forward to this year 2021, I’m currently 24 years old. I stumble across the condition Reflex Anoxic Seizures on a disabilities facebook group (someone was asking advice on how to manage it). Now when I went looking for this condition, it wasn’t with the purpose of “is this me?” it was a “the hell does anoxic mean because google keeps showing me bogs”. What I found fit together too well, matched with my childhood experiences almost one-to-one. Things like marked pallor of the skin and fairground rides and snow being triggers. I even sent screenshots about it to my mother who agreed with me.
This set me down the path of trying to understand what was wrong with me and boy was I not prepared. So yeah backstory over now onto the main events.
On the 8th March 2021 I had a phonecall appointment with my GP. I wanted to discuss two things: my meds and these episodes. The first was easily dealt with, the usual doubling when you say something isn’t effective. The latter was a bit more of an arm twist. Why are doctors always so reluctant to help you figure shit out? Anyway, by the end of the call she agreed to set up an appointment for an ECG (electrocardiogram).
The 12th March came and my boyfriend accompanied me to my appointment. I felt a bit bad for him, I rushed him out the door only for the connecting bus we needed to drive away as I ran up to it. So we sat and waited for the next bus with a Gregg’s bake each. When the next bus came we managed to make it to my GP with one minute to spare. A miracle in and of itself. We sat and waited for my name to be called. I went in alone. I was asked to take my jumper off and to lay on the table thing (it was only after I had left that I realised the nurse who was doing the ECG was the one who had been there when my IUS was inserted). Once settled she went about hooking me up to the machine and twenty seconds of stilling patience later I was told we were all done for the day. Off I hopped, redressed and made my way out, very certain things were gonna be average. Afterall most of the tests they’ve done on me have been average. And I distinctly remember an A&E trip from when I was 17/18ish due to week long heart pains and they said my vitals were fine.
In hindsight I should known better. In hindsight there were far too many concerns I had shrugged off as “just another EDS symptom”.
On the 15th I got a phonecall with the results. It’s never good when the results warrant a phonecall instead of a letter. That means it’s too important to wait.
‘I’ve got the results of your ECG… it picked up an irregular rhythm. You have a short PR interval… and a long QT interval’
It’s also never good when the doc pauses before the last part of results are given. And I think I just went on autopilot at point. Politely humming and acknowleging what was said. I’m pretty sure I was on autopilot until the next day when it finely sunk in. Something was wrong with my heart. Oh god something was wrong with my heart! That was way worse than I thought. A worse outcome than I predicted. How and why wasn’t it caught sooner?
Because I ignored the symptoms. I ignored the chest pains, the palpitations, the shortness of breath. Hell I shrugged off my boyfriend pointing out I had an odd heart beat when we cuddled. I thought “oh its just good old EDS” or “ah that’s just the Raynaud’s”. I never stopped to think “but what if…?”. I think that’s because youth gave me arrogance but also because I tend to be right about what’s wrong with me. So this was a first.
Now I’m hyper aware of my stuttering heart and the pain its in. I’m aware what a long QT interval means. It means the electrical impluses to my heart are delayed for some reason, meaning my heart has a period where it doesn’t beat and the oxygen supply to my brain is temporarily cut off. Its not consistent either. And depending on what is causing the delay in impulses I’ll either be just fine and need meds to help keep it on track… or I’m one of those at risk of suddenly dying in my sleep.
I’m afraid to fall asleep now. I’ve felt like crying yet can’t bring myself to while I’m alone. I’ve gotten the answer I needed but it’s not the one I thought it’d be.
My fainting episodes are Syncopes. Which also kind of align with my childhood expirences. For example: Once when the scumbag was washing my hair over the sink and I blacked out. This matches with “brushing” Syncopes which are common in AFAB people. It’s when the pulling on the scalp triggers a nerve impulse that then cuts of oxygen to the brain. And that’s just one example. Reflex Anoxic Seizures are also classified as Syncopes so I could still be right… but I’m not going to be as sure about it.
I’m currently waiting for the hospital to give me a cardiology appiontment. ‘The full tests’ as my GP put it. This isn’t the end of my tale. I will be back with more as it develops.
