Chronicles of the Heart, Part 45 – back to Nebivolol…

Well, here we are again, after two months the wheel has turned full circle, and I’m scrabbling for effective heart medication again. But Nebivolol, after all I said about it? Yep, and I’ve explained my reasoning below.

Yesterday, I was so weak I could barely speak, and bordering on tachycardia. Tachycardia is, officially, a heart rate of 100bpm or above – trust me, when you’re on the receiving end, the difference between 95bpm and 100 is entirely academic! A heartbeat as erratic as a punk band on speed didn’t help either.

So, today, I reintroduced Losartan, at 12.5mg. It’s not perfect, but it’s an improvement on, well, nothing.** Heart rate down to high 60s, so at least I don’t feel as if I’m vibrating. And I can speak normally again.

**I told my GP that taking Adizem XL (24-hour sustained-release Diltiazem), twice a day both reduced tachycardia to normal, and brought my BP down to a sane level. So he prescribed Adizem SR, exactly the same dose, but only active for 12 hours. I simply don’t get the response with SR that I got with XL, which is doubtless linked to the higher serum levels of Diltiazem from the latter – Jesus, it’s not rocket science!

So anyway, I’m essentially, except for the addition of Diltiazem, back where I was in July. Thing is, if I ignore the erratic heartbeat – which has been with me now since the mid 80s, so is unlikely to suddenly kill me** – I don’t feel too bad today. I’ll continue with this combo then (Diltiazem and Losartan), which has no known adverse interactions, and see how it goes. (Not going to happen – see Nebivolol, below).

**Ha!

If all else fails, I still have Digoxin to fall back on. It has no major interactions with anything I’m taking, and the few moderate interaction seem to come under the heading of “this might happen but if it does we don’t know why, or even if it’s real”.

This is the type of reaction that tends to be reported by relatively few people during trials, with no cause found but, because it was reported, it goes on the list. This is why I caution people not to take Patient Information Leaflets at face value – they don’t always tell the full story and can be needlessly worrying (I do most of my drugs research here http://www.drugs.com/  ). And, of course, just because a side-effect is listed, it doesn’t mean it will happen to you.

If I get a new drug, I check for adverse interactions, but ignore side-effects unless something goes wrong. The listing of drug side-effects on PILs can. for many people, become something of a self-fulfilling prophecy once the idea is planted. I’m not saying patients should be kept in the dark, I’m saying that patients need to raise their knowledge level, and not blindly expect GPs to know everything about, well, everything – it’s simply not feasible.

Nebivolol.

There’s something else I need to reconsider, too – the beta-blocker, Nebivolol, because the effects of this morning’s Losartan are already history, and at 83bpm my heart rate is heading for the stratosphere again.

It’s fair to say that for a little while, taking Nebivolol, I felt very well indeed – until it all when to hell.

As I’ve said, previously, the consultant went straight for the maximum dose, 5mg, when I should have started with the lowest possible dose, 1.25mg.

I have a feeling that maxing out the dose immediately, instead of working up to it slowly, might well have made me oversensitive to this drug. It makes sense to me anyway – hit someone with a dose that triggers adverse reactions and lowering the dose might not affect them (I’m whistling in the dark here – I’m well-informed, but obviously I have my limits – yes folks, you heard that first here!).

So, having given the matter a lot of thought, I intend to re-introduce Nebivolol at 1.25mg and just suck it and see, starting tomorrow.

Looking back at my notes, aside from the side effects, I got the best results with Nebivolol at 1.25mg every 12 hours, but by that time I’d decided it was history and just wanted it gone. I will, though, as I have Diltiazem too, now, just go with one dose a day for now, unless, as before, I develop tachycardia by early evening.

I think it’s fair to say that I could use a little support here, but there is zero point in my asking for another cardiology referral, because I’m on the Arrowe Park shit list for daring to complain about, and publish blog posts detailing, my absolutely abysmal treatment.

A referral to another hospital is out, too. It’s hard enough getting to APH, the chances of my being able to get to the Royal in Liverpool are between slim and none – it might as well be on the moon as I can’t use public transport, or afford taxis.

That’s because the return taxi fare is around £35, doable occasionally but not, as almost happened at APH before they decided I wasn’t going to get any tests at all, several times a week.

So it’s DIY time – again – and from tomorrow, it’s back to Nebivolol. I have enough tablets left, once they’re cut up, to give it a fair trial (just about a month’s worth, once a day), and we’ll see how that works out.

There are a couple of problems, though. Despite the starting dose in heart failure being 1.25mg, the only tablet size is 5mg, which is scored to give 2.5mg (ish). So the tiny, oval tablets have to be quartered, which makes it impossible to get an accurate 1.25mg dose. WTF is that about?

The other problem is Diltiazem. Both it and Nebivolol will reduce my blood pressure, and the consultant told my GP not to prescribe both as it might drop my BP too far. I don’t want to lose Diltiazem, as it has a beneficial effect on my breathing, and at the level I intend to take Nebivolol, I don’t believe the risk is significant, or even there, anyway (after all, the consultant prescribed 4 times the dose!). So I’ll suck it and see, and monitor my BP several times a day.

What I am NOT going to do is monitor the Nebivolol with my pulse oximeter more than a couple of times a day, if at all. I think that’s where I went wrong last time, obsessing about the minutiae and, just maybe, missing the big picture.

We’ll see…

Advertisements

37 thoughts on “Chronicles of the Heart, Part 45 – back to Nebivolol…

    • It was effective, but troublesome, and I think that starting with far too high a dose is what caused most of the problems. Hope I’m right! If not, I’ve no idea where I go from there.

      • bit harsh that Mo. at least he tried whilst most would just do as doc says and hope they are right. after being overdosed on one med in one hosp. given 2 stomach injections in same hosp with no record of them being given but you dont imagine such things happening., another doc telling me my slightly enlarged heart is down to my having had high blood pressure when ive never had it, (still not sure that,as that doc said, my results on that xray were a mistake or not) and drs and nurses not reading my notes properly and stating that i had a heart attack 5 years ago when there was nothing showed up on my heart scan at that tme, or since. then i can understand why Ron feels/felt it neccessary to do all he has done. maybe if he hadnt he would already be dead.who knows? i know i wouldnt be here now if i hadnt stopped aspirin for one thing…couldnt breath at all as i am allergic to it but specialists take no notice when you tell them that. and diltiazem which made it difficult for me to walk cos of the swelling of my feet and ankles they caused.i refused metformin cos of side effects and thru diet alone have reduced my fasting bloods to well below the upper limit and same with statins… now got my cholestral down too. can be done without meds if your stubborn enough.providing your not too far into a disease .thats not to say ill always be able to do it. but at least .like Ron, i tried.

  1. After following your blog for a couple of years after today I will not be following you anymore. Maybe you should have followed the advise of the Consultant

    • You might have followed me, but clearly you’ve understood nothing.

      If you had you’d know that the consultant failed to prescribe Nebivolol, I had to insist on it, and he went for a dose which was 4 times higher than the maximum recommended starting dose in heart failure, which seriously screwed up my life. All of which has been covered in detail.

      Before I saw that clown I was mobile, albeit on wheels. I’ve barely been able to leave my flat since.

      • Ron Maybe I understand nothing but I have to have faith in our NHS i realise that all isnt perfect with the system but unless you can afford to go private its all we have got. My husband has suffered three heart atatcks two strokes and bladder cancer. I myself suffer from COPD. My mother who is nearly 90 also has heart failure and was diagosed two years ago i take her to the warferin clinic every month she also is on a lot of medication. I think with all of that i am able to comment on the NHS. No the appoitments dont always work out how we want them to regards the times etc, but I have found the staff have always been very helpful with regards to wheelchairs, and have always been willing to push my mom from one dept to another as i can find this makes me very breathless. I dont expect always to see the actual Consultant sometimes it is a member of his team i e Senior Registra but the consultant himself is always on hand if need be. If i am unable to take my mother to the clinic an ambulance can be arranged to collect her and take her home again. May be i have not understood all of your posts but do wish you would go back to the hospital and have the tests that may fully diagnose the problems that you have . You have got nothing to loose have you. Its all of the chopping and changing of the medication that i find hard to understand. My husband also is on a lot of medication and has found the side effects of some very distressing, we are not as well informed as you are and if a drug does not suit we go back to the doctor and ask can it be changed, this has been done on a number of occassions.

        • What you have failed to grasp, Mo, is that this isn’t about you, or the bloke next door, or anybody else. It’s not even about the NHS.

          It’s about me, and my experiences with Arrowe Park Hospital, who have been fucking up my life for nigh on 30 years, and, currently, its cardiology department, where they’re carrying on the tradition. And it’s about last time, when I got a consultant so goddamned dumb he though the logo on my jacket was my real name! As I’ve explained, at length.

          And I can’t ask him to change my meds** because he doesn’t want to see me again until January, and if the averages don’t work out in my favour I’ll be dead by then.

          **Not least because I’m out of options.

          Or have you missed that too? I’m dying, and I simply don’t have time to waste on doctor who make crass mistakes, like prescribing a new and potentially dangerous drug at 4 times the rate it should have been. And even at the correct rate, Nebivolol could have seriously harmed or even killed me (and still might, on this second attempt, but at least this time the dose is right), so not scheduling an appointment for 2 weeks down the line, for a progress report, instead of six months, is criminally irresponsible.

          So excuse me if I seem a tad pissed off – I’m trying very hard, here, not to die.

    • And by the way, Mo, here’s a couple of paras I edited out of that blog post. Not, I suppose, that you care:-

      The reason for running the risk of giving Nebivolol a second chance, is simple – my life is shit, I’m out of options and, unless it can be made considerably less shit, I don’t want to be here.

      It’s getting on for 5 weeks since I’ve actually been outside for any reason but to take rubbish to the bin room, 20 months since I’ve been able to sleep in a bed (which is 20 months spent sitting, 24/7, and frankly my arse hurts way beyond anything that’s sensible!).

      That’s not a life, it’s just a test of endurance – and I’ve had enough.

      Have a nice day!

  2. You should never just take the word of a consultant or anybody for that matter without doing some research yourself; nobody knows everything and we are all individuals. Furthermore, it doesn’t take a brain surgeon to know that you should start at the lowest dose and increase until reaching a level where you get the most out of the medication with the least side effects. Good luck Ron!

    • Thanks Bev.

      I outsmarted myself today, though. Last night I found a Nebivolol tab I’d already cut up, so used that. Big mistake as, through being exposed to the air, it had lost whatever efficacy it had, so it starts properly tomorrow, with a freshly-cut tab.

      “You should never just take the word of a consultant . . .” Quite so, especially one who thinks the logo on my jacket is actually my real name! Where do they find these people?

    • Morning Bev,

      Yep, it seems to be doing what it should, HR down to 77 (from 103 last night when I had a major panic attack – that’s not happened since the early 90s).

      There is a downside, though, which I noticed before, and that it takes tachycardia to keep my O2 sat normal, at around 95%. Dropping my HR to what it should be, also drops my O2 to 91%, and that’s bad news.

  3. So if you could keep the tachycardia lower but not so low to affect you O2 too much is what would be best then? How about trying a quarter of the pill? It’s got to be so frustrating and depressing trying to work this all out; I know it’s hard when you have many different issues and tablets, I feel like a walking chemist sometimes. Hope you enjoyed your salmon. 🙂

    • A quarter’s what I’m taking, Bev, 1.25mg. Things is, tachy is more immediately dangerous than low O2. Low O2 might slow me down, tachy can kill me. My aortic valve is coated with calcium deposits – if tachy shakes that loose and it reaches my brain, I’m dogmeat. Dead or a vegetable.

      And tachy or not, that could still happen a dozen times a day, with a fit of coughing, or any exertion at all that drives up my heart rate. There’s just no knowing, when I get up in the morning, if I’ll still be here the following morning.

      Most with this condition die in 2 years. Or, depending on the theory currently in favour, 50% die in 2 years – I’m 20 months in and feeling just a tad paranoid.

      On the plus side, the salmon was good. Quality was poor though, soft and mushy, so I just fried it. Would be good done as per the recipe with a bigger piece of wild salmon, or an upmarket farmed piece – not Tesco’s!

  4. I can understand the paranoid Ron, it has to be really difficult, some days more than others. Well you know you best so go with what you feel is best for you. I have tachy also but not as bad as your and my medication is controlling it very well for now and asthma under control – not being able to get enough 02 is frightening in itself never mined everything else you have going on.

    Your going to beat those odds Ron!

    • Hopefully – just to be able to see the 2012 end of the world fruitcakes crawl back into their holes. Hell, the damn Mayans couldn’t even predict that their own civilisation would dry up and blow away.

    • Not really Bev – there’s the problem that my lungs are shot anyway, so odds are I wouldn’t survive it, and even if I did, the benefit wouldn’t be that great. On that basis, it probably wouldn’t be offered.

      And there’s a huge downside – Arrowe Park Hospital – I wouldn’t let those buggers treat a hangnail.

  5. Couldn’t you get a referral to a better hospital and specialist? I know you have researched Ron, isn’t there anything at all that you’ve come across that would extend your life or at all or make things more comfortable for you? I hate that this is happening, surely there is better treatment to be had! 😦

    • On the plus side. Bev, I’m already ahead of the game – when I was 17 I was told I wouldn’t make 40. But luckily Ventolin inhalers, and others, came along in my 20s, and when I was 38 Phyllocontin Continus (aka Aminophylline SR), was released.

      The only other hospital is Liverpool, about £35 for a round-trip taxi fare doable occasionally, but not for repeated diagnostic tests – I’d be looking at £300-£400.

      And, of course, whatever’s been in my file at APH that’s caused all the crap over the years would still follow me. There’s something highly detrimental in there, I just don’t know what ( paid my tenner and had a look – waste of time, of course, and anything deemed “upsetting” can be redacted). My best theory is that my ex had very serious MH problems, and in their pointy heads that meant I must have too.

      Aside from what’s been in my file since the 80s, what’s there from this year won’t be flattering either!

      Bottom line, though, given my overall health, there aren’t really many options.

      Anyway, the cardiologist at Liverpool is the guy who cocked up my angiogram in 96. He was buggering about round my heart for about 20 minutes and going nowhere, then he said he couldn’t find one coronary artery, so they’d have to flood the aorta with contrast medium in the hope some would trickle in. So the tech guy got a huge syringe of the stuff ready – when he found it. Then, while I was lying on the table with tubes in my heart, they got into an argument over who was going to pay for the wasted contrast medium.

      Half an hour later, when he came back to dress the hole in my femoral artery, he did it with a Cornish pasty stuck in his mouth! So much for asepsis.

      Later, back on the ward, he said my arteries were fine. So I said, how come I get angina attacks? Oh, he said, you don’t! Despite the fact that what put me there was a referral from the cardio guy at APH who refused to accept I’d had a coronary** and claimed it was angina.

      **I had – it took me six months to recover. That’s not angina – I’ve had more angina attacks than I can count – I know exactly how they feel.

    • Hi Bev,

      I’ve increased the dose to half, and getting better results. My heart rate, as I type, is down to 63bpm, a bit low but well within the safe range, but any activity sends it soaring – I don’t think there’s anything to be done about that and, presumably, it’s soaring less than it would unmedicated.

      There are no problems at this level,** this time, so obviously, starting low and working up, is 100% better than starting high then scrabbling for a lower dose that doesn’t push me into bradycardia.

      **There’s a persistent, non-radiating, chest pain. Could be associated with Nebivolol, but could be any damn thing.

      Nebivolol is obviously cumulative, too, as I started the half-dose yesterday and it did nothing. Today it was more effective, but it does take an unconscionable time to kick in. I’m hoping that improves.

      So far, then, it’s looking good.

      Harking back to yesterday, what would solve all my problems is a heart-lung transplant, but the idea is so terrifying I’d never agree to it even if it was offered, which it won’t be.

  6. Hello Ron,

    So nice to here that it is working better! 😉 On the heart-lung transplant, what about it terrifies you? Have you had any surgeries before?

    I believe that COPD is not very nice, I’m glad I stopped smoking 19.5 yrs ago.

    • No surgery beyond a toenail removal – the whole thing, not just the ingrowing bit – but medicine has always been something of a hobby, with the result that I know a lot about procedures where ignorance is probably preferable.

      COPD is no fun at all, but neither is it a death sentence – with care, and attention to meds, it’s manageable for a long time. I’m not sure how long I’ve had it, but in 1996 when I had the coronary, my GP phoned the hospital from my place and I heard “patient has severe COPD” – that was the first I knew of it – but you don’t get to be severe overnight, it takes time. My guess would be that it kicked in around 1992. Hard to be sure as there are huge gaps in my memory, probably thanks to ME. In fact, anything before January last year it pretty hazy.

      I did think, at one point, it was the onset of dementia, but acquired skills, like how to use a computer, are intact, as are skills that go back to my childhood, like how to cook – it’s just than the detail of whole chunks of my life is gone. I can still remember bits and pieces, like being assessed by the Pulmonary Function Laboratory, getting better meds as a result (and also picking up a bug there), but I have absolutely no idea what year that was.

      On the other hand, routes I last walked over 30 years ago I could still walk now, mostly without a map. And I can recall books I read many years ago. So I doubt it’s anything sinister.

    • as my mum would have said Ron. its probably old age and poverty.lol.sounds to me like your no different to a lot of others of your age and older in the memory department. i have phases where my mind goes woolly and i have difficulty getting my head around things. (thats been happening this last 5 years ) and the number of times i have to sit and think what word i need when typing or writing something and often have to ring a friend to ask them for suggestions of what it might be, are beyond a joke at times..lol.

  7. Sometimes we can gain too much information. I’ve had several surgeries so I’m not bothered by them, figure when I go it’s my time to go, whether under the knife or on a bus.

    The memory or lack of is probably the ME as I have the same issue with Fibro, I hate it when I’m talking and hit a brick wall, just draw a blank on what I was talking about or what word I was looking for. Fibro has stolen my brain!

  8. Hi hugosmum70

    I don’t know who you are or anything about you, going by your name and picture I could assume that you are 70 or older; but I know nothing about your health or anything else to make a judgement or comment. I can speak for myself who at 48 have had my life stolen by Fibromyalgia and Arthritis both physically and mentally, just a couple of my health problems. I know Ron is older, but also know how ME affects a person. There is a big difference between affects of age on memory and how ME and Fibro affect it. I see with my mum how her memory has changed she is 71 and pray she does not get Alzheimers like her sister, my auntie a horrible way to see your loved one die.

    • as i said Bev, its not an age thing with me as its been happening since i was a young woman. though mostly when tired.
      yes i am 70,just, and have a lot of different things wrong with me now. ASTHMA, SPINAL SPONDYLOSIS (since i was 49) COPD, (disgnosed 6 years ago)AND DIABETES (diagnosed a year ago. to name 4 from around 25 conditions ranging from minor to major, mostly diagnosed over the past 5 years.. am also an ex nurse with a son who has fibro and a daughter with HD (HYDRODENITIS (not sure of spelling). another condition which wont go away apparently. only with that, you can see theres something wrong. with most of what i have ,it doesnt show. just like ME,AND FIBRO. I walk with a stick now but thats the only outward sign. even tho i am in agony with my back,neck and shoulders most of the time.painkillers only take the edge off.. i do know about fibro because of my son.who is 40 and has suffered with it since he was in his 20s tho only recently been diagnosed with it.plus im an ex nurse. i also know about Alzheimers. my father had it, he died 12 years ago. so theres a very brief potted history. i was not intending a put down or anything and am sorry if you thought i was.

  9. Not to worry dear I didn’t think you where trying to put my down, sorry that it came across that way. Sounds like we are all falling apart! I have a little reprieve for the next couple of days, my daughter who is 18 and has autism and ADHD has gone on a short break tell Monday with two friends and two carers; some extra sleep will be nice 😉

    • ive just had a few days of nothing but rest. was fine when i went to bed weds night (well as fine as i usually am anyway) but 4.20am woke feeling sick/ went to loo and was there for the next 2 hours being sick and diarrhoea. then managed to get 3 hours sleep. but still not 100% on waking so called doc. got the usual cant you come to surgery. i have no one to take me. neither of my kids drive and the 2 relatives that do i dare not subject them to whatever i had. one is a dialysis patient who has jhad 2 heart attacks (only 46 years old) and who has already had a really bad year thanks to a tummy bug he caught at the beginning of spring. the other is diabetic type 1 and his partner,my sis, had a stroke 5 years ago and also has asthma and COPD. so i asked who would pay for cleaning taxi upholstery if they insisted on my going to the surgery.and i had an accident/ and told them i dont call them out unless i really cant get there and i feel its necessary. as it turned out the doc knew no more than i did. so i stayed in bed reading and sleeping trying to keep water down initially then a bit of bread. etc. every 2 hours. slept from 8pm to 7am that night completely forgetting to take my thyroxine, 4 asthma sprays and gaviscon advance. hadnt had any sprays, antihistamine or lansoprazole that day either. got up. made a very light breakfast had that/ went bacj to sleep till 12.30pm. then got up tho didnt get dressed till today. so thrilling few days ive had. lol. lot better now tho still wary of what im eating.

      • Sounds like an attack of “there’s a lot of it about,” or the default fallback – ” a virus”!

        I wouldn’t worry about missing your meds, as long as you don’t make a habit of it. It fact it can do you good to have a break, as they often work better afterwards. My diuretic had stopped working and, last week, I ran out for two days. When I started again it was almost back to normal.

        Years ago, before I had so many, every Sunday I’d have an inhalers-only day, and leave all the other stuff alone. I don’t know if it actually did any good, but I felt better for it.

  10. Hey Ron,
    Catching up on blogs and wanted to mention that another hospital might be worth looking into.
    My mother “in law” has cancer and changed hospitals because Scunthorpe’s resident consultant is dire. Through her GP she organised an appt at a specialist hospital in Manchester and with the consultant they arranged for her to regularly visit Leeds which is nearer but still 90 minute trek.
    Anyway, point is she gets transport arranged at the hospital, it’s free and because it is so far away its normally someone local taking just her in the car. Could be worth looking into?
    jen x

    • must admit you could very well be right. ive felt even better than before the attack. not falling asleep all the time for instance. in fact im the other way around. im not feeling tired at all and it takes me a while to get tired enough by reading to get to sleep. mind you im sleeping pretty well once i get off.and getting 6 hours good sleep instead of being up every 2-3 hours going to the loo or with leg cramp.so i trot off to the loo then go off to sleep again for another hour to hour and half.
      pretty good considering ive had years of having to get up at least twice each night until diabetes set in a year ago then it was 2 hourlyt/ so im well pleased.

Comments are closed.