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Neurocardiogenic Syncope Kills me Daily

Old 09-08-2019, 03:28 PM
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Neurocardiogenic Syncope Kills me Daily

So I have a Heart Condition, in which my Heart stops and causes me to lose consciousness, this makes life very hard.
Here in Australia, there are no Medications available and Dr's refuse to install a pacemaker in my chest as I am "too young", to which I answer, how I would like to live to at least 40 if possible, every day I feel I may die, it may be my last episode, I may never wake up again.
This is so scary and has ruined my life since I was 16, I have never been allowed to drive and now at 34 am still explaining my situation to everyone I meet and they don't believe there is no help for me.
I am just told to avoid my triggers, which are: standing too long, sitting too long, being stressed, tired or hungover.
I ran away from my Alcoholic mother 7 years ago and now live in Australia, 12,000 miles away from her, we talk now, but only on Facebook, and not about personal issues, I tell her the very basics of my life now.
I find it hard to make friends as everyone seems to drink too much these days and I cannot handle the dramas they cause, so moved to the Countryside and am now stuck here, unable to drive so I had to rely on friends and neighbors who wanted me to give them more than just friendship but they do not believe my Heart stops even when they watch me pass out while completely Sober. I have to stitch myself up now as Hospitals hate when people call an Ambulance for me, they cannot do anything for me and I am just taking up a bed that is needed by more serious conditions, I am sent to walk home and the nearest hospital is now a 7 hour walk away, so I tell everyone, if you see me on the floor, leave me, do NOT call an Ambulance unless you are coming with me and can help me get home again and they can then hear what the Nurses and Doctors say, how they refuse to do anything for me.

I hate my life most days and sometimes wish my heart would just stop and let me go.
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Old 09-08-2019, 06:02 PM
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I hope that more medications will be come available in Australia in time BH.

I'm not sure what the age thing is about with pacemakers. It seems to me that younger people would be even more suitable for the procedure than older ones.

I don't know about you, but I'd still rather be in Australia for health care than just about anywhere else in the world

D
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Old 05-14-2020, 12:10 PM
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Me too

I have syncope, too. Caused by dysautonomia/POTS.

Iím so sorry youíre struggling with this. I am, too. Iíve tried all kinds of medicines, but nothing helps. Iíve been disabled for almost 10 years now.

I wish I had some advice for you. But I just wanted to let you know I understand your struggle.

Iím in the US. Seeing a new dysautonomia specialist next month - after being on his waiting list for over a year. I donít expect heíll have anything new to help me. And the appt. is going to cost $1100.

For that much, heíd better be able to cure me with magic. 😁

Hang in there. How old do you have to be before theyíll give you the pacemaker?
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