u/Interesting_Age7345

TLDR:
propranolol and ivabradine both rubbish. very unwilling cardiologists and GP whose hands are tied. what now? what other meds are there? how do i fight the system whilst severely unwell and fucking on my knees from exhaustion?

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propranolol fixed my HR mostly but it triggered a serious mental breakdown. ivabradine is doing nothing at all. my heart went to 165 while i was SAT DOWN in therapy.

one doctor told me that i’d gone through all the options in terms of treatment for POTS. someone else, a cardiologist told me there WAS no treatment for it. my current GP managed to wrangle ivabradine which seems to be doing absolutely nothing - in fact i think it’s making things worse because i had another round of paramedics come to the house yesterday (my HR hit 155 in bed).

i KNOW there are other medications and treatments for this fucking thing but i was told to keep taking the ivabradine by the duty GP and i’m afraid to just stop without being advised on how to taper properly.

does anyone have any tips or med suggestions?
i have tried wrangling with the NHS, i have even shelled out for a private cardiologist (who told me to do more exercise and referred me back to the NHS, who wouldn’t even do a tilt test) and it’s been for the most part like trying to beat blood out of a rock. (a rock that keeps telling me i’m either hysterical or in need of an ambulance.)

i’m desperate. i’m also diagnosed post viral and im terrified this is turning into me/cfs (which is a likelihood i’m already at risk of in that i’m autistic and female)

any advice or help would be appreciated. thank you!

TLDR:
in your experience which is more accurate when recording heart rate? fitbit or visible?

my fitbit is recording much lower numbers than my visible band and i’m freaked out.

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just got a visible watch today. i’ve been using fitbit religiously for the last six years but i got struck down with some post viral shit and i needed more chronic illness friendly tracking.

anyway! my heart rate readings on visible are vastly higher than on fitbit. i get up to make a drink, my fitbit registers 111 and my visible registers 133. earlier on i had to walk to the optician (not fucking ideal. felt like my legs were going to collapse) and visible tells i hit 157 whereas fitbit registers 125 ish.

what’s the accuracy on these things? not sure which to trust. in the past fitbit has definitely neglected to register spikes in heart rate , especially those that were fleeting, so i’m more inclined to believe visible but if visible is right then i am in real shit.

the last six months i’ve been behaving fucking ludicrously, as it turns out. my symptoms we re treated like no big deal, no one was really fussed about diagnosing me, advising me or even treating me, so i just thought “oh well! my heart rate might be jamming at 150 for hours at a time but the medical professionals tell me that this is harmless and will not cause any long term damage(!!!!), so i’ll just carry on without changing my behaviour.” my insanity aside — if fitbit has spent the last few years underestimating this shit then what the hell have i been forcing myself to push through? when fitbit recorded 179 the other day, how fast was my heart beating in reality????

i only bought the visible band because i’m currently newly with post viral fatigue and have been exhibiting a lot of terrifying symptoms. my life for the last month has consisted of spending every day in bed feeling like a limp ragdoll whereas before i was walking 10-15 miles a day, cooking, doing my hair and makeup, and all the rest of it.

a.) i wish fitbit had been a bit more realistic with its tracking (if it is indeed the inaccurate party here)

b.) i wish that at some point during the last three years i had been fucking helped and properly advised because i suspect all of this could have been avoided

c.) if you are currently pushing through symptoms PLEASE FOR THE LOVE OF GOD STOP. you will ruin your life. please do not do what i did!!!! i am literally begging you to listen to your body because eventually your body will take matters into its own hands. if you can still walk without feeling like you’re going to die, please don’t fuck about with it. please be careful. please don’t listen to anyone who makes out like your symptoms are not a big deal. trust yourself, trust your body. please just fucking rest where and when you can because the alternative feels like the sky is falling

sorry but how the actual fuck am i find it SO HARD TO READ BOOKS??? NOT EVEN A PAGE PER DAY??? HOW IS SOMETHING SO BASIC .. THIS FUCKING DIFFICULT?

i even made a deal with my therapist where i’d read “one book a week” and check in with him each session but you know what. i managed TWO BOOKS. and one of them was a book of poetry (most of which i’d already read)

it’s not that i don’t enjoy reading, i love books, i love stories, i love WRITING (the irony is injurious and sickening) but i just.. don’t read? days go by and i don’t pick up a book. it’s just too hard to sit still and focus and there’s always something i’d rather be doing like WRITING (HAHAHAH you know that thing you can’t do very well if you don’t read books) or scribbling or painting or ANYTHING just so long as i’m moving my hands and i’m not just sat there Consuming (or enjoying. as other people would probably put it)

it’s the same with fucking tv and films. WHY IS IT SO HARD? WHY AM I NOT DOJNG IT? I AM UNFUCKINGEMPLOYED WITH NO OBLIGATIONS??? where exactly does my time go? why am i reading NOTHING whilst simultaneously lusting over the art of reading and somehow finding myself unable to commit to the actual act?

i don’t know how to explain it. my time just pisses away and i’m not even sure HOW i’m not reading the books it’s just that at the end of each month i find myself realising “OH wow i did not read a single fucking word”.

to be fair i’m pretty good at reading fsnfiction but that’s usually because it feeds into an autistic obsession. apart from that i’m fucking useless and it breaks my heart because it’s not even just reading - i GRT NOTHING DONE. I AM TWENTY SIX I HAVE NEVER HAD A JOB I DO NOTHING WITH MY LIFE EXCEPT COMBAT MENTAL ILLNESS INEFFECTIVELY

even when i try and say to myself “ok just read one page every day” IT DOESN’T fucking work. i hate this condition. its cost my money its cost me a healthy body its put me in an overdraft from hell and it means i always feel EMPTY SND SHIT AND POINTLESS

FUCK THIS

(post precipitated by seeing a girl on instagram review the 15 books she’d read in april)

i loathe myself. profoundly

not entirely sure i’ve got pppd but this is my second round of “it”, whatever it is, and i wanted to see if my symptoms lined up with anyone else’s here:

basically it feels as if thinking of any kind is causing my brain to ache? not in the sense of mental exhaustion but more that my neurons (or whatever) have had to physically push through cement soaked cotton wool in order to execute any kind of cognitive process.

i love writing but at the moment it gives me this pressurised, achey, confused, overwhelmed head feeling that makes me want to close my eyes and abstain from all sensory input. i read sentences and they just … garble. and sort of hurt me. and my eyes glitch over the page as if trying to focus on just one sentence is somehow triggering them to jump all over the place.

my head and eyes also start to feel glitchy (?) and overly light sensitive (and this is hard to explain because it’s not a tangible difference in vision, but more a sensation that feels a bit like when your phone camera can’t decide on an exposure and flickers between massively overexposed and pitch black). it basically ends with me just wanting to shut my eyes because they’re almost stinging from the effort of absorbing something so complex.

it just feels like a huge effort to use my brain? especially so when looking at a screen, or writing of any kind. everything feels so raw and foggy and crap.

obviously i’m dizzy too, but currently the cognitive issues are more irritating for me because i’m on bed rest and if i don’t move around i can more or less tolerate the wobbly on-a-boat feeling. also - and i don’t know if this strikes a chord with anyone here but - the dizziness seems to sort of thud with my heartbeat if that makes sense? kind of like my heart is making my whole body do a tiny lolling motion with every beat.

idk. my head just feels like fucking glue and i’m also feeling really weak and floppy (which i think is due to over exercise which is what caused my last flare) so i can’t really do anything but lie here lamenting the fact that i can’t walk, can’t write, can’t think, can’t watch tv, can barely even hold a conversation without wanting to throw something across the room due to sensory overwhelm. if there’s music playing and the window is open and someone is talking to me (or even just eating food) it feels like i’m going to have a meltdown. i am autistic so this isn’t unprecedented but ohhh my god, the sensory stuff has never ever been this bad before.

anyway, sorry for the long post. just hoping someone can relate to some of this because i’m scared, and i’m not able to walk or use my brain or write things when a few days ago i could do all of these things perfectly adequately. i’m absolutely miserable and so frustrated that this has kicked in right before summer