The emotionally draining craziness!

The emotionally draining craziness!

My name is Sarah, I am 20 years old and live in Sydney. Around 1.5 years ago everything seemed normal, I'd always had trouble with fainting growing up- my GP put it down to blood pressure. One day whilst getting ready for work I passed out, it was the day my sister was due to have her first HSC exam. I didn't wake up for 10 minutes and I was confused for 20 minutes after. I was so afraid and shocked.. little did I know this would be the start of my emotionally draining adventure!

I was placed in hospital for a week, they discovered an abnormality in my heart rate. When resting or relax my heart rate sits on 39BPM, but the second I stand my heart rate raises to 120BPM. I was so worried, was I normal? Was I not taking care of myself? Investigation after investigation gave me the diagnosis of POTS syndrome and reflex syncope.

Since then I have been taken through so many tests, as my condition worsen and worsens. I wear compression stockings 24 hours a day, some days I'm wheelchair bound and others I am too tired to talk. As my mentality worsens, so does my heart. My rate is more abnormal then ever expected, I pass out at least once a week and if my body receives a common infection like a cold I find myself hospitalised losing consciousness multiple times. My specialists put it down to my body not being able to understand it's flight or fight response. I have recently been given the daunting news that after medication trial after trial I will be receiving a pace maker in 2 months... at the age of 20 years old...

And so, my real adventure begins. A pace maker at 20 years old. I have so many questions, why? How do I continue to stay positive?

My family are so concerned, and I hate being such a negative burden. I've lost so many friends, because of lack of understanding. I try my best to keep a strong exterior and face by fears with a positive mindset but I feel completely helpless. How will I ever overcome a constantly draining battle?

8 Replies

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  • Welcome to this forum. You will get a lot of comfort here knowing that you are not alone in your symptoms and a lot of us on here are what I call google Dr’s (Face it that’s how most of us found this site) I had arythmia. Tachycardia etc and would drop as low as 28 and up to 180 when having Tachycardia attack but fortunately for me I was virtually asymptomatic and suffered very few outward symptoms. My issue was suitable for an ablation which along with a few healthy lifestyle changes 3 years on appears to have solved most of my issues.

    Ok will get support on here. It helped me decide to go for the ablation and gave me some knowledge to ask for it as an option in the first place. They were talking pacemaker for me at one stage.

    By the way I’m 57 years old and an ex sportsman so a very different circumstance from yourself. Stick with this sight ask questions you will get answers from persons with similar experiences further on or through treatment. Think of here as a big comfort blanket and discuss options with your cardiologist!

    Good luck for the future. It can only improve

  • Thanks for your great and very comforting Post. I have just started talking to cardiologist after maybe 20 years of very slight symptoms.

  • Oh dear you are so young to be going through all this and I feel for you. Hopefully those who have had pacemakers fitted will reply to your post and give you some reassurance as I know there are lots out there who have them fitted with great success. Try and think positive and look at the pacemaker as a chance to live a normal life again. Let us know how you are doing. Lots of hugs (())).

    Brenda🐝

  • Keep your chin up stay positive and hope that things work out

  • I am so sorry that you are so young and to be going through this- but maybe this means a new beginning for you, and you will have so much life left to live! stay positive and keeps posted

  • Sarah my heart goes out to you. Try not to feel helpless. You have so many options. You ask how to stay positive? Something that always works for me is my TM (Transcendental Meditation) practice. It has tons of heart health (and bigger) benefits. It opens doors to other options too. And thanks for your post. It will make many others feel they are not alone. I for one look forward to your posting on your progress.

  • Thank you all for all your comforting replies everyone! So lovely to know there are other support networks on the journey!

  • HI Sarah

    That must sound daunting to you at 20 years old but all I can say is having a pacemaker fitted was the best thing I did. I had mine fitted when I was 55 ( I know that's a lot older than you but still unexpected!) after being told I had a slow irregular heartbeat going down to 39 bpm when asleep and sometimes gaps of up to 4 seconds between beats when asleep. Also told I had Afib.

    The operation was fairly straightforward and I was conscious all the way through with the surgeon chatting to me and playing music off his phone whilst he carried out the opp. I didn't feel a thing after the initial anaesthetic and it took about 40 mins.

    After that my heartbeat doesn't drop below 60 bpm as the pacemaker kicks in and does its job so I feel confident I'm not going to pass out and this may help you . I cant feel any difference in my body and cant hear the pacemaker working and I dont know its there most of the time. There's lots of people who have pacemakers so you're in good company ( Elton John for example!)

    Hope your op goes well and you see some improvement as a result. Good luck.

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