the thread of ATRIAL FIBBING

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royal free's contact structure includes me being able to send emails to change appointments -- which barts does not -- so i have done this

mark s, Monday, 27 September 2021 11:21 (two years ago) link

six months pass...

so to catch: they caught my request abt the december appointment needing to be face-to-face and changed it -- but then at the last moment the pandemic clamp came back down and it was postponed

four months later it has not been rescheduled -- tho i am copied into to a request earlier this week from one dept to another to action this (i will chase it up next week)

i also went into my health centre last week for my various routine yearly tests: blood pressure was high and everyone went scrambling, the nurse said i had to talk to a GP. well i did -- but it was a GP who i've had before and liked (very thorough and matronly) but this time she seemed scattered and flustered, a mixture of bossy and distracted, asked me questions but only half-listened, did some hurried tests which were all fine, and eventally agreed that the best thing was to up my BISOPROLOL to see if that had any effect and to check in with my actual real GP (who i never see) if it stays high.

she also quizzed me about coffee. well the consultant has always said coffee is nothing to worry about (re the atrial flutter) but maybe BP is a different matter? so i said actually it's time i took a break from caffeine and/plus also i shd maybe shd some of my extra lock-in pounds vcz they probably aren't helping.

i don;t even drink much coffee now but this has been the toughest caffeine withdrawal i've ever been through, i'm still achey (head and muscles) eight days later and have the mildly feverish hot-eyes thing -- tho i am sleeping better. (i did a lateral flow case just in case but at least it's not THAAAAAAT… )

plus it took me ages to find my BP meter, i'd put it in a dumb place and i then kind of wanted not to test it until the caffeine was out of my system, so i waited until yesterday. BP still higher than it should be -- which of course immiedately started making me anxious, like every twinge is thet start of a heart attack. a couple of years back a nurse identified that i have "white coat syndrome" with regard to this procedure -- as if the electronic hum of the BP monitor secretly stresses me and drives up my reading. she always did it with an old-school hand-pump monitor and got "better" (lower) readings. but i don;t have a hand-pump monitor plus i always find it a bit of a scuffle getting the stupid in the correct position on my arm, which is ANNOYING and probably also raises my BP lol.

anyway today my pulse was a little lower -- below 100 -- but too high still for calm and normal. the thing is, this is the first time it's been checked for at least six months and it may have been high for AGES (i'd stopped checking bcz of the white-coat thing and just assuming i had an upcoming appointment and so on). when i was talking to the GP last week i was basically feeling absolutely fine. i'm feeling a bit rough now but i think it's 2/3 caffeine withdrawal to 1/3 ramped-up anxiety.

it's a bank holiday tomorrow, i will take it easy and then call my *actual* GP (who is good but i never actually see) on tuesday. maybe she will send me into A&E like happened in sept 2019 -- i thiiiiink i am fine (“heart rate ain’t nothin but a number” per the cardiologist in the hospital i wd be in, see upthread) and i am not keen to be on a ward at all (i am double-vaxed and boosted but the boost was five months ago)

mark s, Sunday, 17 April 2022 17:39 (one year ago) link

cant have symptom w/o typos

mm typos

mark s, Sunday, 17 April 2022 17:43 (one year ago) link

i was off caffeine for a lot of last year after my last procedure (which was successful for a while then reverted)

but over xmas i had two big editing projects and i just always cave and start the day with coffee when i'm editing: the upside we all know and love, the downside is ambient headaches and sluggishness first thing, combined with mild fatigue from the beta blockers (tho i was only only a low dose of beta blockers most of last year)

a second downside -- it belatedly occurs to me -- is that i tend to dose my headaches with paracetamol (acetaminophen), not in vast doses per day but pretty regularly, and i believe long-use paracetamol is sometimes asssociated with high BP? if cutting out caffeine also means cutting out paracetamol (as it generally seems to) then that's probably a good move, tough as it always is

mark s, Sunday, 17 April 2022 18:02 (one year ago) link

(actually tbh i've stopped finding the fatigue from the beta blockers such a problem, so that's something i guess)

mark s, Sunday, 17 April 2022 18:04 (one year ago) link

Did any med tell you to cut caffeine? I've never had one do that, never found any studies to support the idea, more like this just now (usually minus the weasel disclaimer at end):

Research suggests that caffeine isn't a cause of abnormal heart rhythms or atrial fibrillation, and drinking four to five cups of tea or coffee a day shouldn't increase your risk of developing coronary heart disease either. However, the effect of caffeine will vary between people.

Drinking caffeine with atrial fibrillation - British Heart Foundationhttps://www.bhf.org.uk › ask-the-expert › af-and-caffeine


Given the stress of doing without, which might itself elevate bp or not do it any favors, I'd keep on drinking coffee, although I do better usually with far less than five cups, unless it's an all-nighter, which I rarely get paid enough to do anymore.
But yeah if you can cut back on paracetamol (acetaminophen), that would prob be better.

dow, Monday, 18 April 2022 01:19 (one year ago) link

And sodium of course, which is one sneaky ingredient.

dow, Monday, 18 April 2022 01:20 (one year ago) link

no the caffeine decision was purely mine, not a med suggestion: and my reasoning is the headaches and the sluggishness -- plus possibly the side effects of the paracetamol i take to tamp down the headaches

i know from previous experience that once i properly kick it i can cut out painkillers altogether (i also know from previous experience that i can only kick it for a few months at a time but)

mark s, Monday, 18 April 2022 09:54 (one year ago) link

sorry you've had a rough few days, mark, how are you feeling now?

my mom has AFIB (and I'm pretty sure I'm not many years before getting it myself), her doctors have told her to limit caffeine, she says she can tell the difference if she only has one cup of coffee (sometimes half a cup of regular mixed with half of decaff), rather than a few. So hopefully cutting back will help you, although if your withdrawal hasn't stopped you could taper rather than cold turkey? My worst ever headaches were when I was in uni and taught at a summer camp; I had a strong cherry Coke habit and went suddenly to no pop at all, couldn't figure out why these stupid kids were giving me a headache everyday and finally realised it was cold turkey from caffeine.

colette, Wednesday, 20 April 2022 03:52 (one year ago) link

generally fine yesterday, mildly headachy this morning (day 11) -- monday was very bad but i think that was a weather migraine sneaking in there lol (difft bit of my head)

it's not like i was even drinking very much coffee any more, there's nowhere really to taper to! tiny little cups? plus i know myself well enough to know that tapering won't work where cold turkey actually might, at least for a while

mark s, Wednesday, 20 April 2022 10:03 (one year ago) link

Another alt to cold turkey/tapering: Sometimes when I've needed to temporarily abstain, I've found that my body can be fooled or satisfied by the taste etc. of decaf--dunno if this would work long-term, though.--

dow, Wednesday, 20 April 2022 23:26 (one year ago) link

think i'm over the hump cold turkey-wise -- it definitely took longer than usual

i went in for a blood test yesterday and the nurse told me to contact her if my blood pressure remains high; i'm meant to be seeing my own GP about all of it but (bad timing) she is on holiday till first week of may. i think i probably need the dosage my BP meds (RAMIPRIL) to be raised. also i need to talk to my cardiology specialist abt my raised pulse rate (ideally without being sent to A&E in the interim, which i want to sidestep for COVID reasons if possible) (this happened pre-COVID, basically a needless stay in hospital i feel) (see upthread for the tale… )

(i don't really want to be seen by the doctor i saw a couple of weeks ago, i find her very confusing to talk to)

mark s, Thursday, 21 April 2022 10:09 (one year ago) link

two weeks pass...

just aced my blood pressure check lol yay

health centre pharmacist then describes symptoms of high blood pressure (= headaches) and of low blood pressure (= fainting when you stand up): naturally i suffer from BOTH of these most of the time

also she said “you’re still very young” — ok then, yes that's correct i am

anyway i have booked a big "where we are now" face-to-face with my GP next week to talk abt all my many ailments and how they interact and what i shd do abt them (this is partly bcz if i am moving out of london and away from this i think unsuually good health centre i am going to be gambling with the kinds of NHS uselessness that e.g. colonel poo rightfully decries -- better get the good stuff while i still have good access)

mark s, Thursday, 5 May 2022 10:46 (one year ago) link

nice to hear this mark.

have you done any looking yet at what's going to be available near you?

Tracer Hand, Thursday, 5 May 2022 11:56 (one year ago) link

not yet no :|

mark s, Thursday, 5 May 2022 12:02 (one year ago) link

might not be a long piece of research lol

Tracer Hand, Thursday, 5 May 2022 12:04 (one year ago) link

nice possibly final visit (since i’m moving out of london) with my primary GP of nearly 40 years, just to have a face-to-face to jigsaw together the implications of all my ailments: for which the answer is mainly (a) re the topic of this thrread viz my high pulse-rate get my cardiology consultant to move his ass and give me a rescheduled appointment (she thinks more ablations are pointless but says he's the one whose knowledge counts and i will likely have to change meds somewhat as BISOPROLOL is evidently not doing what it needs to

as for my asthma more exercise and lose a little weight lol. the headaches are “stress” headaches (ie who knows what causes them, maybe just the state of the world) and (she is old-school) paracetamol is fine in moderation and not implicated in blood pressure (which is now back to normal). i’m booked for a hearing check re my tinnitus and try epley exercises for my labyrinthitis. anyway she is a good wise person (actually my favourite GP at the centre even if i nearly never see her) and i will miss her

i mentioned the *other* GP i saw a few weeks ago to my sister (who was also a patient at this centre for many years) and she laughed and said "she always made me feel i was being told off" -- which, well, true, me too, but i guess i kind of feel i deserve to be told off so it doesn't really register

mark s, Tuesday, 10 May 2022 15:57 (one year ago) link

maybe stress headaches in part from getting more writing-editing gigs, also re health and considerations of moving from London---maybe try this very basic form of meditation I read about, which is sitting for 20 minutes not thinking about much: I tried sitting on bench by front door of library after hours on a short day, mostly sheltered from the evening sun, but with a glow around the frame, just the occasional passing car, although I did sneak peeks at my travel clock, will try to do better about that ("trying" all this keeps some tension in there but I've only started these breaks).
My tinnitus long ago became part of the environment, and occasionally I think I hear crickets. Having doctor remove ear wax helped (don't try it yourself, though there are kits). Easy on the headphones for a while after that.

dow, Tuesday, 10 May 2022 17:32 (one year ago) link

four months pass...

in the end i wrote a letter to my cardiologist, one copy to barts and one to the royal free (he does consultation at both) to point out that i was due a rescheduled appointment after the pandemic cancellation in december and it was now something like eight months?

anyway i got a reply and now have an appointment in november -- that's quite a gap but tbf i haven't been suffering or i'have made more fuss

meanwhile in jab news: i got flu *and* my covid booster this afternoon 💉💉

i: an old lad in the packed waiting room was quietly looking at facebook or youtube or whatever on his phone and got ambushed by a VERY LOUD advert screaming at him for not satisfying HIS WOMAN and he needed [such and such a pill, didn't catch its name despite volume] which is SIX TIMES MORE POTENT THAN VIAGRA etc, anyway he found the off button eventually
ii: the pharmacist pronounced it "omnicron" (am i a dick for find this funny? yes i am) (same question-answer to part i)
iii: afterwards he said "i strongly advise you to eat a banana! this will deplete your energy!" i asked did he mean in the next ten minutes or later today (i was already on my way to MS afterwards) and he said "over the next two weeks!" -- which again made me laugh (no one strongly advises you to eat a banana in the next two weeks). luckily i had my mask on so no one spotted i am finding them funny: apparently my being-a-dick levels are off the chart today

my original anti-COVID jab and the two boosters were both pfizer and i had no symptoms at all (ditto the time i tested positive with the thing itself); this was my first dose of moderna so it wd absolutely serve me right if i get the works, we shall see

mark s, Saturday, 24 September 2022 15:36 (one year ago) link

I thot it was omnicron! Let's all go to see allll thee timelines at the Omnicron.

dow, Saturday, 24 September 2022 16:49 (one year ago) link

turns out that eating bananas is good, when did i forget this

mark s, Sunday, 25 September 2022 15:55 (one year ago) link

they gots potassium, also they taste good (to me)

dow, Sunday, 25 September 2022 17:33 (one year ago) link

three months pass...

ketchup inc.minor downstream implications

so after asll the faff i scored an appointment w/my nice consultant in mid-november, at which it was decided to put a pause on further procedures for the time being: my fib has calmed down into flutter (viz the aberrations form regular rather than wild-party patterns) and my resting pulse rate is only *exactly twice* a normal pulse rate (c.126 instead of 60ish). but as i have no other symptoms we decided let's just observe for the next six months and decide the way forward then

so far so good, except today i was in for a bunch of tests and a chat with the consultant anaesthetist abt an entirely unrelated procedure: not urgent -- the condition is a minor inconvenience tho i cd do without it -- but also something the meds think is worth tackling. tests all fine and i have a letter from my cardiologist to say "yes i know his pulse rate is twice what it should be, here's why that's no emergency", which helps orientate the student that does the ECG.

anaesthetist also talks through all of this and explains the best kind of anaesthetic for the surgery (spinal not general) and what that entails (off blood thinners for three days, longer if there's bleeding afterwards, as there might be). strongly advises i do sleep studies to see if i have sleep apnea (i don't think i do but he's the specialist). and then says he thinks given my heart condition that i'm probably high risk in the context of the surgery being explored, and he's going to postpone it until he's talked to my cardiologist. since there's a chance of clots and embolisms and also just general heart chaos courtesy the anaesthetic. "and we wouldn't want that" -- well no we wouldn't

i was planning to postpone it anyway as i'm in the middle of moving house and it feels like too many things at once! so this isn't a catastrophe. but it is the first real-world consqeuence of the condition since they admitted me (in 2019? see above) for a week, for racing pulse…

mark s, Wednesday, 4 January 2023 16:26 (one year ago) link

I think you can do sleep studies now in the comfort of your own home so that's a plus

| (Latham Green), Wednesday, 4 January 2023 17:07 (one year ago) link

i asked abt this and they said no it's in the hospital

mark s, Wednesday, 4 January 2023 17:10 (one year ago) link

If you do have surgery, the anesthesia may make you lose some words for a while: they'll say Oh Noes, what could it be, better run some neurologicals---but (judging by the experience of several friends & relations in recent years), it may well turn out to be anesthesia---if they can't find any other cause and the condition is temporary, that is. Can last up to 3-4 weeks, at least it did for a couple of the people I know who were affected.

dow, Thursday, 5 January 2023 01:06 (one year ago) link

better safe than sorry obv but i've actually been under full general anaesthetic since the fibbing began -- albeit for fibbing related procedures so i guess they have the heart under close observation throughout

and they didn't involve sharp cutting knives which this one in a small way would

mark s, Thursday, 5 January 2023 13:54 (one year ago) link

hope this goes well for you

| (Latham Green), Thursday, 5 January 2023 15:16 (one year ago) link

waiting for a phonecall from my health centre following up on the letter the anaesthetist sent to my GP, which fingers x-ed is just admin

meanwhile ATRIAL FIBRILLATION was trending on twitter this morning -- partly bcz it's apparently stroke prevention day (tbc i am in favour of stroke prevention) and partly bcz thousands of anti-vaxx numpties are busy screeching that AF is caused by the jab (clue: it is not)

mark s, Thursday, 12 January 2023 16:03 (one year ago) link

oh the letter arrived at my house also, he thinks i am at risk of sleep apnea and wants me to take a sleep studies test -- which fine, sure, w/evs

mark s, Thursday, 12 January 2023 17:22 (one year ago) link

Believe me, taking one and getting CPAP was a game-changer for me!

Ned Raggett, Thursday, 12 January 2023 18:27 (one year ago) link

yeah it made a big difference for mr veg also

werewolves of laudanum (VegemiteGrrl), Thursday, 12 January 2023 20:10 (one year ago) link

Same for me - especially helping with racing heart in the middle of the night stuff.

Jaq, Thursday, 12 January 2023 20:20 (one year ago) link

six months pass...

turns out -- six months later -- that i have no significant sleep-disordered breathing tho i do have "severe snoring" lol, sorry neighbours i can't hear it and it doesn't affect me

mark s, Saturday, 15 July 2023 10:29 (nine months ago) link

three months pass...

quick atrial update: despite ongoing adventures with vertigo lol, my annual check-up went v well -- the consultant (the same cheery guy who i have now seen in three sepeatre hospitals, barts in smithfield, the royal free in gospel oak and this time in fkn ENFIELD) (nice shiny modern building tho) was v positive: my heartrate may be a bit faster than all you sad normies but i am otherwise reassuringly asymptomatic (viz this higher rate causes me zero distress) and he thinks no further procedures are necessary at this stage 👍🏽👍🏽👍🏽👍🏽

(not even sure what these procedures wd acually be: more cardioversions and ablations? on towards a pacemaker? anyway, we not going in that direction yet)

(i have a friend whose grandad had 18 !! ablations and lived into his mid-80s so i am chill either way, tbh i just want a quiet life and life in plymouth is exactly this, between the world-historical storms anyway)

mark s, Wednesday, 8 November 2023 11:50 (five months ago) link

Hooray! (but sped up so it doesn't sound like whalesong to you)

Andrew Farrell, Wednesday, 8 November 2023 14:36 (five months ago) link


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