Chronicles of the Heart, Part 33…

Since my GP has no interest in checking to see whether I’m still alive and, if I am, what condition I’m in, and my cardiologist has apparently been abducted by aliens (hopefully doing unspeakable things to the useless sod!), I’ve made an executive decision and doubled my heart drug – just one more rung on the self-medication ladder.

I’ve been taking Candesartan for about a year, at 4mg a day. It’s a pretty nasty drug, it has to be said, but there’s no denying it’s effective. What it’s mainly been effective at, though, is maintaining a state of sustained mediocrity, with few crises, while still leaving me almost totally housebound, except for one afternoon a week in the pub, and an occasional excursion to Sainsbury’s**. Oh joy…

**Which is a hell of a lot better than not taking it, believe me.

OK, I accept that’s more than some people have, but it’s not enough. I make no apology for that – I simply want more out of what remains of my life.

Yesterday, I increased the dose by 50%, which worked pretty well, so today I doubled it to 8mg, and I have to say I feel pretty damned good.  Getting up in the morning – a massive, and dreaded, effort for the past year – was a breeze. No shambling around for hours, fighting to stay awake, trying not to puke, and doing nothing besides check my email. Even this morning, when I overslept and took my 06.00 meds at 08.30, I was good to go by 09.30

My breathing is better, much better, as I’ve just realised I missed my 13.00 inhalers and haven’t even missed them (just realised I’ve taken no Ventolin today, either, so how much of what is ascribed to COPD is actually my heart, and for how long has that been the case?**), and I find that having greatly reduced one problem, pain is easier to tolerate, and as an unexpected bonus, my mind feels remarkably clear, due, no doubt, to improved blood supply.

**Finally started to wheeze about 18.00, so had a dose then.

So clear that I’ve just knocked out a thousand-word blog post with very little effort. Damn good one too, if I do say so myself (the one fly in the ointment being scrambled spelling – right letters, wrong order, which is an ME problem from way back). I’m also cold, and where that would normally have me scurrying for the thermostat, today it doesn’t bother me. I should explain that I’m not actually cold, but at 26C and below I feel cold (more ME crap).

What now, then? Well, the first thing is not to give in to temptation and overdo things. It’s very tempting to drag out the vacuum cleaner, but I know if I do that so soon, I’ll crash, so for now I’ll content myself with writing.

The important thing, right now, is to do nothing out of the ordinary, until I see whether this improvement is sustained over the next week.

On a less subjective level, my pulse ox shows O2 sats at 92%, (not great but I feel better than of late when it’s been consistently higher at 95%), pulse 90-ish and stronger than usual, and less erratic, though admittedly stronger is a relative term, still only sparking the display at about 50% of normal. It’s also come down from a fairly tachy 125, which has been the norm for weeks now. I wonder how much that’s due to not taking Ventolin,** which can jack up the heart rate substantially?

**I feet very rough, and shaky, after taking the above dose. Really quite ill, in fact – time for a little Ventolin research, I think.

All in all, though, a very good day, although I’m starting to flag, but hey, I’m not expecting miracles, and that’s normal for this time of day (19.15), so with the ‘wait and see’ caveat, for now I think I can chalk up a tentative win.

And somehow, I feel taller. I’m not, of course, but snatching even a small victory can do remarkable things…

10 thoughts on “Chronicles of the Heart, Part 33…

    • It’s not going to get any better! But at least I have the knowledge to source drugs and self-medicate safely. Most people don’t and that’s where the danger is. But, of course, we shouldn’t have to in the first place.

  1. That’s really good to hear Ron. Especially from what you have posted previously. I’m thinking about doubling my max dose of Mirtazipine since the supposed “single” 40ish woman in the flat above me has turned the godammed place into a drop in centre for family, extended family, friends, etc. They all seem nice enough, but JESUS, the traffic does my head in. ;>}

    • Been hearing some bad stuff about Mirtazipine – friend had her dose doubled by her GP, made her suicidal (not unknown with tricyclics). She’s stopped it completely , and is back to normal now.

      • I have read some unfavourable accounts of mirtazapine as well. However, it seems to do a helluva lot better job than SSRIs or TCAs ever did for me. Probably because I’m totally whacked from a neurochemical point of view. It’s actually a tetracyclic, faster acting, and helps a bit with ruthless anxiety as well. I’ve read that this is due to the blocking of 5-HT3 receptors, whereas SSRIs, MAOIs, SNRIs and tricyclics, all increase the activity of this and other 5-HT receptors. This can increase undesirable side effects in some people, myself being one of them. Found out the hard way! It also has a slight sedative effect, and being a rampant insomniac, this kinda helps! It’s no cure-all by any means, but after 8+ years, it’s an exhausting step in the right direction!

  2. Don’t get me wrong, I’m no medic, but if you dont know how you react to your medication, how does a GP think he does.
    So good for you in taking a ‘grown up’ decision and using your medication to better control your health.
    I have recently had to change GP due to a move.
    1st visit I was told I was demanding, I had just had an appointment with a consultant and we discussed my pain relief regime, hence I relayed this to my GP and requested the said medication.
    2nd visit she told me I was mis-managing my medication, I was prescibed 3 times a day but usually only took it twice, said I shouldnt do this – maybe saving resources springs to mind!!
    Guess who I wont be going back to see?!

    If more people acted responsibly like you are, more people would possibly get the right medication instead of being led like sheep and thinking GPs are gods.

    OOOps sorry, but this is a subject I feel very strongly about, I have been in constant pain for 4 years now and used like a guinea pig to try and establish what is right for me.

    • Ah – you have to lead GPs – make them think it’s their idea – they’re fragile little flowers (that’s the polite version!) They mostly won’t prescribe until the consultant gets in touch. In theory that should take hours, but some are dozy buggers and it can take days or even weeks.

      I never discuss what I actually take with my GP – all I want to know is do I take it as well as or instead of (that’s a question people die through not asking). He can write whatever dose and times he likes – if it works for me, I’ll go with it, if it doesn’t, I’ll figure out what does. A drug for nocturnal acid reflux, for example, is prescribed every morning – it has a 12 hour effective life, so guess when it gets taken.

      As for pain meds, I’ve been in constant severe pain since 1983, when I was struck by lightning, never had any meds worth a damn, so I eventually cobbled up my own, a sort of Spoonie Speedball – 120mg DHC, 200mg Naproxen and 2 30/500 Co-codamol – not exactly a combo for everyday use, but gets the job done when it’s needed.

  3. Good for you, as you certainly are still within the doseage on the instructions. I cant understand why the docs haven’t increased your doseage as the following quote (from Medicine net) states quite clearly the STARTING dose for heart failure….presumably that then means it can go up!
    “The recommended dose range of candesartan for adults is 4 to 32 mg once daily. The starting dose for treating heart failure is 4 mg once daily. Doses may be doubled at 2 week intervals as tolerated by patients. The maximum dose is 32 mg daily.”
    Mind you, as an ex-nurse I always query everything!

    • Haven’t seen my GP in over a year. I’m mostly housebound (which he knows – according to the practice nurse I’m on the list for routine visits, which haven’t happened), and, as most people in this building are old and infirm – and many are his patients – he’s here several times a week. Wouldn’t kill the bugger to pop in for five minutes.

      On another tack, I haven’t been to the surgery for any reason in about 8 years, not since they installed the germ-laden log-in touchscreen – the stupidest idea to hit general practice ever, given the average person’s concept of hygiene (where I live, sneezing into one’s hand is considered perfectly acceptable!). I’m not paranoid about bugs, but as it’s going to be poked at by sick people by default, it’s a great way to spread infections.

      And the place isn’t wheelchair accessible anyway – they’ve just moved to new premises which are even worse (same building, different part). The doors are massively heavy glass, with absurdly strong spring closers, impossible on wheels.

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