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Newly diagnosed, terrified!

Posted , 5 users are following.

vicky2010
vicky2010

Hi all 😊

I am 37, female, 4 children. Generally fit and well and always active due to not driving.

Bit of a back story...

I was a smoker. About 2 weeks before I quit I started to feel these weird pressure like pains in my chest, it was my heart and would happen on exertion such as fast walking. This spurred me on to quit. Which I did successfully since 7th August 2015! Going strong 💪🏻.

Anyway, numerous GP visits, diagnosed with acid reflux given lansoprazole, had an ECG-all clear, then depression given mirtazepine, another ECG-all clear and then anxiety given propranolol (all these were wrong diagnosis!)

This 'sensation' that was quite frankly terrifying, debilitating and concerning enough to make me hold my chest pushed me to continue on at the GP but because I was getting into an emotional state they were positive it was anxiety!

Reluctantly I got sent for a stress test. I get to my appointment Friday 2nd October. All initial SATS were good, ECG-good, O2-good etc. So on the treadmill I go. All slow walking-so slow I had to slow my normal pace or I'd have walked off the front of the treadmill. The idea was to gently increase speed and alter the incline every 3 minutes. I did 3mins walking flat, then 2mins into the first slight elevation my heart did the funky chicken!! Decided to reset it's rhythm. After that everything was utter chaos and terrifying. There was cardiologists, consultants, extra nurses and other bodies..6 in total. They were watching me asking 'do you feel ok?'...'normally people with this condition would be feeling really poorly at this point'. I can confirm I. Felt. Awful.

They were making me worse than ever. I got dropped into a wheelchair, my already attached monitors got put on some kind of mobile transmitter while they moved me to a ward because they wanted to 'catch her when she terminates' (seriously, what a poor terminology to use considering the situation?!). I got plugged into the main machines, canulars in.

They did vagal manoeuvre-no avail.

They administered Adenosin-no avail (very awful drug,made me feel like I died a little).

Then they administered Amioderone through IV drip for 30 minutes. This was successful after 1hr.

I got admitted.

I have an appointment with the cardiologist in November and have also been referred to EP studies to discuss Cather Ablation if I'm a good candidate. I'm being treated with 2.5mg bisoprolol once daily.

That's my story. Can anyone relate???

I'm very scared for my future and what kind of danger I'm in? I'm too scared to walk fast etc.

Much love to all xx

1 like, 6 replies

6 Replies

  • kaylee9695
    kaylee9695 vicky2010

    Posted

    My back story. I found out I was pregnant in february 2015 the day I found out I got a full time job. I had very little problems at all. I started my new job in the beginning of march. I began having episodes of feeling like I was going to pass out and would have to sit down. My managers seemed to not mind since they were glad I stayed and did my job. I no longer work there and got a new job in june as a part time job. I was unable to keep this job because finally I was sent to a cardiologist after a mini episode on july 4th that sent me to the doctor. He wanted tests ran and said i couldnt drive but sent me to a cardiologist that specializes in rhythm. The rhythm cardiologist said I was fine and sent me on my way sayi g I have vasel vasel syncope and I could drive as long as I pullover if I feel weird. I knew this had to be wrong but there was nothing I could do. As time went on my mini episodes became more frequent until august 30 I was driving and pulled over and noticed my Chest hurt and was rushed to the hospital in an ambulance with a heart rate of over 160 and bloodpressure at 72/46. I was put on flecanide and had another episode october 6th and the dose was upped now I'm facing a possible allergic reaction and having to go back. All I can say is good luck to you. My first big episode by the way lasted over 2hours before they got it down cuz they can only do so much with a pregnant lady. Im due october 14th
  • vicky2010
    vicky2010

    Posted

    Hi. Thanks for replying. I know I'm not alone with all this.

    I absolutely do not want to live the rest of my life with this condition and being on meds for it so I will do everything I can to get it resolved.

    I have been told by hospital staff-mainly the nurse on the night shift because she had the same condition. She waited and waited hoping the condition wouldn't be too debilitating. In the end she had the catheter ablation, she says it is the best decision she had made regarding her SVT. Everywhere I read people are promoting the ablation procedure. The general conversation is 'if they offer you ablation, snap off their hands'.

    Have you ladies enquired about the CA?? If I was 1 year down the line with this SVT and I was a good candidate I'd be begging for it. Being on these sort of meds at such young ages really can't be beneficial to the heart in the long term.

  • kaylee9695
    kaylee9695 vicky2010

    Posted

    Yea I just turned 21 last month and this is my second child which will be delivered cesarean on the 14th smile anyway my doctor automatically said after I'm getting it fixed through that same process you were talking about. Im nervous but it is worth it. I know a lady who had it done and nothing had flared up since.
  • poppy08416
    poppy08416 vicky2010

    Posted

    You aren't in danger, you can walk as fast as you want when you're not having an episode.  This is merely a problem with electrical circuitry of the heart.  It's not a death sentence, it's mostly not even dangerous.

    I've been living with this for 30 years (I'm 43) and just manage episodes as they come (sometimes hospital, sometimes not).  The daily medication (metoprolol) makes me so heavy and sleepy that I prefer not to take it and I've refused an ablation so far.  I mostly get 2 months between episodes but not always.  I'm an RN so I fully understand what it's all about.  For some reason having regular chiropractic adjustments keeps me mostly out of trouble.  There seems to be a vagal nerve trigger quite often.

    • poppy08416
      poppy08416

      Posted

      NB  I have been told by a cardiologist that it will get worse as I age and I'll simply get sick of having to go to the ED.  When I do I can go get the ablation done.  I usually wait 2 hours or so before I go anyway as sometimes it converts back in the meantime. I'll probably have an ablation when I'm older and my kids aren't so dependent (just in case).   
  • melissa20822
    melissa20822 vicky2010

    Posted

    Hi, like you poppy having my thoracic area adjusted always seemed to settled things down for me. I am 48 and have had svt for about 15yrs... initially minimal intervention then in low doses of beta blockers to now on high doses and nothing stopping these episodes. I am a midwife in a birthing unit and these bloody episodes are now happening at work... not fun when you are in the middle of a delivery. . Fortunately i don't have to go too far to have it reverted when i can't stop it myself... interferring with my life now... have been offered ablation over the years... finally having it done on tuesday... praying they can trigger it.
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