A look back on my NCS.


I was laying in bed the other day feeling teary writing this post out, I wasn't sure if I should post it until this morning I could barely sit up, I'm so fed up with constant low BP and chest pains, I just burst out crying, I thought why the hell not! I'm sure some people might want to give it a read. When I think back on how long it took doctors to diagnose my NCS I'm actually quite thankful as most people wait years to be diagnosed with what's wrong with them, it took about 2 years of different tests but they gave me the diagnosis of Neurocardiogenic Syncope in the end. I wasn't that sure of what it was, No one even gave me any information on it so I decided to do some research online. I ended up feeling a little lost and overwhelmed as to how I would deal with it in my everyday life, I didn't want people to pity me or stop hanging out with me but unfortunately, both of those things happened.

I have done a few posts on my NCS and a post on when I had my tilt table test, that was one of the nicest tests (to say the least) that I have ever had, one of the worst ones was the camera down my throat (Gastroscopy), I was crapping myself when I was told I had to have it done, they told me I would be having a bubble test at the same time and that I could stay awake or be put to sleep for it, I decided there was no way in hell I wanted to be awake for that! Before I was put to sleep they gave me throat numbing spray and then I swallowed the camera, when I eventually came around they were pulling it out of my throat, it was awful and so uncomfortable! The bubble test I had to have was saline with bubbles injected through an IV to have a better look at my heart, this is called an ECG with contrast, I was very out of it when I came around and I'm not sure if it was the bubble test that made me feel so crappy, the anesthetic or the camera! I have no idea how long I was under for but when I woke up I had a bad headache, a very sore throat and felt like puking everywhere. As the weeks passed I was nervous about what would show up from the tests, I was told I have a bifurcation blockage which no one explained further to me. 

I've had so many different scans and ECG's I can't keep up with how many I have had all together, sometimes. One of my scans showed I have an unroofed coronary sinus, once again that's been brushed to one side and no one has discussed it with me. I've tried to discuss things with my cardiologist many times but last year he told me there is nothing more he can do to help me, I was feeling a little lost but I'm hoping to have a new one sorted. Living life with fainting spells all the time does get me down, I don't feel like I have the freedom to live my life like other people and I do have other underlining heart problems which my cardiologist never wanted to investigate further with me. I've been called a liar and lazy, it really gets me down because sometimes it's so hard to get myself out of bed and get on with my day.  I'm writing this because I'm feeling very low today and looking back on things does help, knowing I had all those tests to help me find out what's wrong, but what doesn't help is being left in the dark over who will treat me from now on and who will take me seriously. I want more people to understand how exhausting and overwhelming things can get for me, I wish they could take a walk in my shoes but they can't. I want a career and a normal life/normal BP and I want people to stop judging me!


Elle May x

7 comments

  1. I really admire your honesty. I know we may not each other very well but I am here if you ever need to vent or chat about anything! xx

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    1. Thank you so much kelly I really appreciate it you're a star xxx

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  2. Jesus Christ, your neurologist sounds like a dickhead. D:
    I'll admit I've never heard of NCS before (there are sooo many of us spoonies out there, what the hell), but it doesn't sound very nice at all (... yeah, cause chronic illnesses in general are a total fun ride! /s) :(
    Fellow spoonie here to support and vent and rant with you :D xx

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    1. He basically is, he has made me feel as if I shouldn't get the care I should but I know now that it's not true! Thank you for your kind words, fellow spoonies unite! Xx

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    1. Says you! You awesome little star xx

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  4. Hello from Ireland, I visited your blog via a group on Facebook. I'm sorry to hear of your illness. I have fibromyalgia which I've written about on my blog. Sending gentle hugs your way. Please visit and comment on my blog too at My Sunshine Sparkles http://mysunshinesparklesblog.blogspot.com/ thank you xox

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