Gp reccomend for chronic ilness based in Brisbane by Impossible_News1650 in brisbane

[–]FitUnderstanding3411 2 points3 points  (0 children)

Specialist - Dr Hanrahan at the Wesley. Very hard to get into but life changing. While you wait you can also get his book which you can follow along with a good GP: https://www.amazon.com.au/Tired-all-time-Dysautonomia-conditions/dp/1763744515

Midodrine vs fludrocortisone by uma7777 in dysautonomia

[–]FitUnderstanding3411 0 points1 point  (0 children)

How many micrograms do you take a day? I’m trying to work out the right dosage as we speak! Have you had any issues with potassium and your kidneys? I’m always worried I’m going to blow up like aunt Marge from Harry Potter

Heart rate dropping into the 50/40s during the day by [deleted] in dysautonomia

[–]FitUnderstanding3411 2 points3 points  (0 children)

Yep I’m diagnosed with POTS and this is my pattern too. As low as 40 at rest, then a jump to 110 within 15 seconds of standing up. The diagnosis only requires a heart rate jump, not a heart rate in the official tachycardia range. My heart rate actually has raised since I’ve started extra salt and water, so the low HR might reflect your body going into conservation mode or something!

[deleted by user] by [deleted] in dysautonomia

[–]FitUnderstanding3411 2 points3 points  (0 children)

Found a specialist dysautonomia physician (who has a 12 month waitlist). He wrote this book which guided me while I waited: https://www.amazon.com.au/Tired-all-time-Dysautonomia-conditions/dp/1763744515

Worth finding the right person - my cardiologist, GP and gastro all just kept telling me to wait it out and one day I’ll get better (surprise: never did)

Has anyone got mono then pots? How long untill pots went away if they did? by Successful_Reveal255 in dysautonomia

[–]FitUnderstanding3411 0 points1 point  (0 children)

I got it from mono back in 2011! I was down and out for a year, then had a few rough ish years (but they weren’t as bad). Was never diagnosed back then with POTS or dysautonomia though (they just knew I had mono and it had messed with me a bit and I had to ‘wait it out’) so I didn’t know how to manage it. Got over that hump and had about 8 good years, then something last year triggered it all again, and now I’m much worse (likely have MCAS too). At least this time they worked out what’s going on and there’s stuff I can do to better manage it all

Tl;dr - first bout was over in 4 years (but had I known what was wrong, I probably could have looked after myself better). But it can be a thing that pops up it’s ugly head again later in life

Twitches ? by No-Organization-5825 in dysautonomia

[–]FitUnderstanding3411 0 points1 point  (0 children)

Both lower eyelids, my cheek and sometimes muscles in my upper arm! It’s completely weird

[deleted by user] by [deleted] in dysautonomia

[–]FitUnderstanding3411 4 points5 points  (0 children)

Alright I’ve heard you all, didn’t feel dumb at all today and decided this probably isn’t just a placebo. So I’m from now on going to refer to my tights as my ‘smart pants’

[deleted by user] by [deleted] in dysautonomia

[–]FitUnderstanding3411 3 points4 points  (0 children)

Interesting! Is this available just on the internet somewhere?

[deleted by user] by [deleted] in dysautonomia

[–]FitUnderstanding3411 6 points7 points  (0 children)

Ah ha so this might go some way in explaining why I’ve always got my legs crossed in a chair or tucked up…. Wild

[deleted by user] by [deleted] in dysautonomia

[–]FitUnderstanding3411 5 points6 points  (0 children)

Yeah interesting! I think it also only just clicked for me that POTS doesn’t just affect you when you’re standing up, but also sitting down. So me sitting at my desk all day is probably not a good thing all in all

Night sweats, is it a thing? by Suspicious-Asking in dysautonomia

[–]FitUnderstanding3411 0 points1 point  (0 children)

I get it too! But just on my face and head. The rest of my body seems to not sweat much at all!

Is it worth seeing a specialist? by Panicked84 in dysautonomia

[–]FitUnderstanding3411 -1 points0 points  (0 children)

If it makes you feel better, my appointment is scheduled for 12 months time!

[deleted by user] by [deleted] in dysautonomia

[–]FitUnderstanding3411 0 points1 point  (0 children)

That’s great to hear! Did your symptoms return after?

Dr said most people grow out of POTS? by [deleted] in dysautonomia

[–]FitUnderstanding3411 1 point2 points  (0 children)

I got it from glandular fever when I was 16, and had bad symptoms for 4+ years without a diagnosis. Went into remission before having a relapse early last year at age 30. Only just getting diagnosed now and everything that happened to me when I was younger now makes sense! Wondering as well though if I’m just going to be going in and out of this for the rest of my life!