Chronicles of the Heart, Part 40 – the beta-blocker battle…

The battle to make the beta-blocker Nebivolol work continues.

The full 2.5mg is effective in countering my chronic tachycardia, bringing it down to the mid-high 60s, but for a once-a-day drug it “wears off” far too quickly. By late evening, not only is my tachycardia back, it’s worse than it would have been with no treatment at all, and my heart is extremely erratic and unstable too.

A half-dose, if taken at the same time as my calcium channel blocker, Adizem, turns tachycardia into potentially dangerous bradycardia (very slow heart rate).

In addition, my ankles and feet are so badly swollen I can barely walk – in this respect the drug has set me back 18 months. As I’m already taking the maximum dose of Furosemide, I’m unsure, right now, where this is going.

Today, then, is Nebivolol’s last chance. I took a half-dose at 10.00, well separated from Adizem,** which I took at 06.00 and, tonight, at 22.00, I’ll take the other half. This should stabilise me through the night.

**This, as I calculated it should a few days ago, has brought my resting heart rate down to the mid-seventies (at midday). My mistake last time, when it drove it down into the low 50s, was taking Adizem and Nebivolol together at 06.00 – the former seems to ramp up the action of the latter to a dangerous level.

Frankly, for patients who have the utmost faith in their doctors, have little knowledge of their condition and medication, and do as they’re told – which is probably most of them – that degree of tachycardia can be dangerous.

Reverting to Losartan if this, ultimately, doesn’t work out, isn’t an option, as it causes too many problem. It causes a painful, blistered, red rash on my legs (now fading), and worse, the sputum in my lungs becomes impossible to clear, and that’s downright dangerous in COPD. It also causes a persistent cough that won’t respond to codeine linctus, which puts an unnecessary strain on my heart.

And while I’m heartily sick of writing to cardiologists, as my next appointment isn’t for six months (and the hospital, in the space of a week has already cancelled my appointment for January 10 and rescheduled it for January 3), I don’t think I have any choice, as even if the revised dose of Nebivolol works out he needs to be kept in the loop, not least about the next sentence.

Nebivolol, by the way, is also indicated for chronic heart failure in the over-70s (why over-70s – the drug doesn’t know how old a patient is, and I’m under 70), and yet the fact that it dramatically worsens my oedema suggests it’s making things worse, not better.

As I’ve said previously, I have some Digoxin on order, which should arrive Monday or Tuesday, and with which I intend to replace Nebivolol if it doesn’t work out as planned today.

That, if it works as it should, will reduce the tachycardia – though somewhat more slowly than Nebivolol – and also strengthen the action of my heart, which should allow me a higher level of activity. This translates as some activity, compared to none at all currently, and that might help to reduce the oedema in my legs and feet.

If the Nebivolol/Adizem combo does work out – and it appears to be so far – I think I’ll be better taking Adizem twice a day, so that I take 180mg of Adizem and 1.25mg of Nebivolol every 12 hours. Makes sense to me – I just have to get my cretinous GP to agree!

I hope, too, to have some scope, mainly in the level of tachycardia, to introduce a low dose of Digoxin, as I’m convinced this will be beneficial.

One thing remains that concerns me. My tachycardia is, for the most part and possibly in its entirely, drug-induced (I’ve explained this to consultant, nurses, cardiologists, none of whom seem able to grasp the fact**), mainly by my Salbutamol inhaler and Phyllocontin Continus, plus a couple of others – so what sort of stresses are being set up in my system as some drugs strive to drive up my heart rate and other try to drive it down? I have a gut feeling that it can’t be good for me.***

**The view seems to be that I’m only the patient, what can I possibly know? Well here’s something to think about, people – the answer to that question is “A bloody sight more than you do!”

***Say you have a car with two engines coupled together. One pushes you along at 70mph, while the other tries to slow you down to 50mph – something, inevitably, has to give.

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11 thoughts on “Chronicles of the Heart, Part 40 – the beta-blocker battle…

    • The bigger, unaddressed problem that no-one seems to care about is that not everyone is me. 😉

      Not as arrogant as it sounds since, as a result of a huge amount of study over many years (and still ongoing), I know what I’m doing when it comes to juggling drugs to get the best out of them for what ails me. I think I might have cracked it with Nebivolol, but I won’t know until tonight, at the earliest, and probably not until I’ve maintained the split dose for at least a few days.

      However, anyone with the problems I had the day before yesterday, and who didn’t know about it, would have been in serious trouble had they continued.

      I knew because I’ve got a good-quality pulse oximeter and an accurate BP monitor, plus an electronic Peak Flow and Fev1 monitor, so I can see what’s going on (not always good for my peace of mind, but still preferable to ignorance). Most people have nothing and don’t know when the drugs they’re taking in good faith are pushing them into danger.

      That’s fundamentally wrong. I don’t know what the answer is, but it’s still wrong, and deaths must surely result.

      As things are, doctors blithely prescribe potentially dangerous drugs with no thought about what happens to the patient if it all goes to hell, except for the assumption that the patient will come back at that point – but what if they don’t know that their heart rate is getting dangerously low? What then? A shrug of the shoulders and a death certificate?

      I plan to try to fit in Digoxin shortly. I know it can be dangerous, and I can take steps to minimise that danger (beginning with the lowest possible dose, for a start). Most people, if prescribed it, don’t even know the risks, or know enough, even, to realise that the smallest prescribable dose can be reduced with care and a tablet splitter.

      Which brings me to a constantly-ground axe – chronically sick people owe it to themselves to educate themselves about their condition(s) and the appropriate medication. And yes, I know as well as anybody else what a burden that can be,** but it really is essential. You’ll probably live longer, for a start.

      **But with a world of medical information a mouse-click away (for those with computers, at least), it’s not the burden it used to be when I had to study medical journals at the central reference library in my lunch break.

  1. Hi Ron.
    My wife, was a nurse and to her ALL patients, who asked questions and wanted answers where branded pests, know-alls and pain’s in the arse.
    Those that excepted treatment – with-out a peep, where ” lovely patients ” and doctors, well, she thought they where GODS.

    Yes Ron, you HAVE to be very careful, one unguarded moment, and you could be history, in the care of the NHS at the present, unless you are very special, of course!

    I now always read the instruction’s/label’s. I’m learning.

    Fred.

    • I know that all too well, Fred.

      In hospital, last year, every day, every patient got an injection – nobody, not even newbies asked why. Until I did.

      “I’m just going to give you an injection.”

      “Why?”

      “Everyone has it.”

      “OK, but what’s it for?”

      “It’s to stop you having a thrombosis from all the sitting around.”

      “I don’t have a thrombosis from sitting around at home, so why should I here? And besides, the toilet is about 20 times the distance it is at home, which means I actually get more exercise here, so there is no risk.”

      “Blank look”

      “So, no thanks, I’ll pass.”

      “But you’ve got to have it!”

      “No, I actually don’t. It’s my choice, and I decline.”

      Flounces off in a huff to fetch staff nurse.

      Repeated at every bloody shift change for 4 days!

      Apparently that’s standard practice throughout the hospital, possibly throughout the NHS for all I know, and as patients weren’t previously going down in droves with thrombosis, it must represent a massive waste of money.

      Not to mention that the junior nurses charged with this task haven’t the remotest idea whether what they’re injecting will conflict with drugs the patient is already taking – they just blindly follow routine.

      One day I was prescribed DHC 3 times a day “But you can only have it twice as that’s all that coincides with the drugs round!” Complained to consultant, who was furious that nurses were undermining him, and he promptly increased it to 4 times a day, just to piss them off!

      On a different note, I take one particular modified-release tablet, Phyllocontin Continus, every 12 hours. The difference in dose between useless, therapeutic, or toxic is tiny, and I know from experience – I’ve taken this drug since 1980 -that I have little leeway after 12 hours before it degrades into useless. Nursing staff appear to universally believe that modified-release means you don’t actually need them on time!

      Now, and always, I take my own meds in with me. You’d think they’re appreciate it, saving the hospital money and them work, but know – apparently, even though I manage my meds perfectly well at home, once I get into hospital I’m going to o-d and cause them maximum inconvenience. That or the patients from the psych ward are going to sneak in and steal them (terrible slur on m-h patients!).

      The days of dedicated, caring, nurses are gone – all we have now are morons with degrees – and how some of these dozy buggers ever got a degree I really don’t know – they make porridge look intelligent!

      So yes, I confess, I’m a pain in the arse, I work at it, and will continue to do so as long as I see a need, just as I did when I was a union rep and branch official, out in the real world.

  2. HiRon,
    Porridge will never be the same again, brillliant! Yep, I was a union rep, before Bill Jordan got his chocolate GONG, the bastard!

    Fred.

  3. Adizem = diltiazem as you once said if i remember rightly (and i just checked to make sure i was right in remembering that).
    I had that about12 nearly 13 years ago (was stopped gradually over the next 2 months by my request due to ……….swollen ankles………..
    again 5 years ago after a suspected heart attack (turned out to be a warning) was put on it again. and from the 2nd day and through out my 6 day stay , including the first 3 days on bed rest with elevated knees (not feet mind you), my feet /ankles were swollen and continued to be so after discharge. at home, reading the leaflet one day i found………………”can cause swollen feet and ankles.” so i told the doc i wanted to come off them. and i was allowed to…. and guess what? my ankles etc went back to normal. now i only get a bit of swelling if i sit too long at this puter. which usually goes after a good nights sleep or a bit of a walk.
    so is that the culprit in your case too?for the swollen feet at least.

    Dee

    • Probably not, Dee – I took Diltiazem for the better part of 10 years with no problems.

      It can cause problems in heart failure, which is why my idiot GP stopped it (in his mind can = will which, for a doctor, is plain dumb), even though it clearly wasn’t causing any problems. I don’t care what problems a drug can potentially cause – it’s those that it actually does cause that matter.

      99.999% certain all my problems are caused by Nebivolol – which is already starting to wear off – so much for once a day (plus the fact that Furosemide no longer works – have to see what else if available). I’ll take more Nebivolol shortly (half-dose twice a day at present) – see if that’s any better. If not I’ll switch to Digoxin when it arrives.

      • Ok Ron. you know what your doing and what suits you. was just a thought knowing it had affected me that way.
        hope it works out ok tonight for yu.
        Dee

        • Right now I’m seriously considering not taking anything heart-related for 24 hours – and see what happens. Looking back, apart from the oedema, I’ve got far worse taking heart-failure meds than I was before.

          I’d assumed that this was because I was getting worse, and that might be the case – but maybe they’re making me worse?

          • who knows WHAT our meds are doing to us. i know im going to be getting some answers as to wether i should still be taking gaviscon advance 6 months or more after being told i have acid reflux. as i just read should only take for 7 days if symptoms persist consult your doctor. (how do i know if symptoms stilll persist if im still taking the stuff?) the doc did say i had to take for life. similarly, the stuff can cause constipation n ive bin having symptoms of that too. (says in the text i read, reducing dosage can relieve that in some cases.)……….so i would say yes/ this med is making me worse…or at least looks like it could be doing so,,,,,,,, similarly yours could be too. we simply dont know. and i often wonder if we are always told the truth about what meds can do.and how much of what we ARE told is simply to cover the pharmicist or drug companys backs.

            • That consult your doctor after 7 days advice is on most, if not all, OTC meds – nothing to worry about.

              Except for the cost!

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