The curse of doctors who fail to communicate with patients…

I despair of doctors, especially mine – I do wonder, quite sincerely, if they’re deliberately trying to kill me, or whether they take pleasure from screwing up my life?

Since I got out of APH my heart has been terrifyingly erratic, clattering along like a broken sludge-pump, always on the brink – and often way over the brink – of tachycardia,** and throwing up a trace as erratically contorted as a rained-on worm – not the neat, regular, peaks I should be getting.

**Tachycardia is an abnormally high heart rate, generally accepted as over 100bpm. I stay in the high nineties indefinitely; sod the numbers, that’s still tachycardia in my book.

And it finally dawned on me that my Diltiazem has been deleted from my meds by my consultant. Diltiazem, in conjunction with the beta-blocker Nebivolol, and after a lot of trial and error, kept my heart rate within the normal range, and my BP within a range that is eminently satisfactory. All that has gone to hell in a handbasket.

The other possibility is that I have PoTS . Perhaps I also have PoTS? How the bloody hell would I know when doctors fuck with my meds without consulting me? I’m the patient, dickweed – it’s my life you’re buggering up. TALK TO ME!

And if you’re wondering why I didn’t notice, it’s because almost everything in my medication regime has been changed in some way – one missing item just didn’t stand out – until now. I was definitely getting Diltiazem in hospital, albeit reduced to half the normal dose. It wasn’t in my take-home bag.

I ordered Diltiazem from my GP, on the repeat list that hasn’t yet been delivered, so the earliest I can get it is Tuesday afternoon, if I get it at all.

If, for any reason, I can’t get Diltiazem prescribed then I shall buy the bloody stuff. Not cheap at around £1 a day, but better than the alternative, which is to be completely disabled yet again by a heart that refuses to run smoothly (and which will inevitably give up the unequal struggle).

And I’ll come back to this in the morning, It’s now 02.00, I’m tired, and my legs are so swollen with fluid I can’t get my trousers off. If that doesn’t change I’ll have to cut them off come morning.

OK, now 06.30 Sunday and I’ve just cut my trousers off as my legs had swollen even more. Taken 80mg Furosemide. so the problem should begin to subside soon, but couldn’t delay cutting as my legs looked worryingly constricted, even more so than earlier. And they, and my feet, leak and smell of pee – an even more worrying development, though sadly not a new one.

Hmm… 08.30. No idea how or to where the last two hours slipped away, but gone they have. So, back on topic, why do I think I have PoTS?

Basic answer – I have all the symptoms. Granted, there might be other causes, but given that we already know my heart is buggered it does tend to point in that direction.

And very often I simply can’t breathe. This isn’t COPD breathlessness, in which the air wheezes reluctantly in and out while providing little or no benefit – this is like trying to breathe a vacuum and, frankly, it’s terrifying.

It certainly was the first time it happened, and familiarity hasn’t changed that. I was returning from one of my myriad small-hours pee excursion when, out of the blue, I had no breath…

And bugger me, just lost another 40 minutes – if I can’t stay awake this is never going to get finished!

So, no breath – managed to croak to a passing nurse “I think I’m dying,” only to be reassured I wasn’t and bundled back into bed. OK, I clearly wasn’t or I wouldn’t be bitching about it, but that, surely, was a situation outside a nurse’s remit to decide, and the duty doc should have been summoned (they pretty much lived on the ward anyway, so no hardship).

Anyway, before I doze off again, check out the PoTS symptoms here – I tick every box except those that are gender-specifically female. It is, I feel, certainly worth investigating.

However, since I can’t even get the drugs to treat an already-diagnosed condition, I’m probably screwed.


7 thoughts on “The curse of doctors who fail to communicate with patients…

  1. Hi Ron. I have POTS. Given you’ve been stuck in a bed & forcibly disabled by your other conditions, you may have the version of the syndrome brought about by inactivity (as opposed to one of the many other possible causes). Being diagnosed takes a long time and is not always particularly helpful. Treatments include beta blockers, vasopressors (eg midodrine), increased exercise (esp leg tone & cardio) increased salt & water intake, corticosteroids (eg fludrocortisone). Almost no doctors have ever heard of POTS or know anything about dysautonomia, and the ones that have are either fixated on one school of thought about treatment, or have waiting lists so long you want to cry. Despite obvious neurological symptoms such as tremors, it took me 3 years for a diagnosis & another year until I got medication (& that was only because I spent my savings to go private with the same docs I would’ve seen on the NHS). Happy to answer any questions you may have, though – just PM me via twitter.

    • Moderately certain I have PoTS too. It’s clear from what I’ve read that they were looking for it in hospital. They’ve added 30mg of hydrocortisone to my meds (switched to tablets, after two successive i-v attempts blew out cannulae, taking the crappy veins with them!**), claiming my adrenal glands are shot to hell. Also doubled my beta-blocker – no explanation. Both might indicate PoTS.

      **Before I was discharged the consultant appeared to reassure me that his mix didn’t normally blow out veins. Sorry, but two for two looks pretty iffy to me!

      However, the first thing I noticed when researching PoTS was the difficulty of diagnosis – it took 10 years of denial and bullshit to get my ME properly diagnosed. However long it might take for PoTS, I probably don’t have the time left. I certainly don’t have years – I might not even have months.

      I’m also researching why I might be taking Thiamine – and nothing in that area is good news!

      • Hmm. Sometimes I feel they just stab in the dark with some of these approaches, though. 2nd neuro I saw wanted to put me on a BB that would’ve been disastrous given my bradycardic tendencies! Don’t get me started 😉 Not sure if you came across this in your POTS research but the feeling of struggling to breathe/consciously having to breathe/not getting enough air in *while at the same time knowing it has nothing to do with your lungs* is a POTS symptom. Not sure if this is what you were describing, but it’s something that seems to come & go. Anyway, I’ll stop cluttering up your blog with my blathering on this. I wish you a decent night’s sleep.

        • Yep – I spotted the breathing thing – one of the things that tipped the balance in favour of PoTS for me.

    • Compared to the basket case I was when I came home (not to mention went in to hospital), I’m doing remarkably well (and hope to do better but a plateau is looming), but I think much of that is down to sheer bloody-mindedness more than medical intervention.

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