Advice re. my mum’s BP (NSTEMI last year)

Apologies in advance for the long post, but I feel like I’m losing my mind here, and the detail is relevant.

We have an extensive, highly varied cardiac history, particularly on my mum’s side. She had obvious cardiac symptoms for years, even had a dodgy ecg when participating in a medical research project and was told she needed to follow it up, and completely ignored it all despite my pleading with her. At age 63, last summer she was immediately started on BP meds having gone to the GP for something else and found to have a reading of 180+ over 120. About 6 weeks after that, she had a funny turn in work which she tried to ignore, but was strong-armed to the nearest GP surgery by her manager, and her systolic was over 200. She was taken to A&E, found to have mildly raised troponin of 31, and her funny turn (her words) which had included chest and jaw pain turned out to be an NSTEMI. To this day I don’t know why they thought to keep her in ahead of an angio, as there weren’t really any obvious clinical grounds other than her BP and some PVCs, but they did, and when she finally got to the cath lab a week later, she required 4 stents and had a 100% blockage of one of the arteries (not sure which one as she couldn’t remember). The cardiologist said at the time it was miracle she’d only had a mild NSTEMI, not dropped down dead, and that the only time he saw vessels as furred as hers were in patients with diabetes, which she categorically doesn’t have. She also cane out of it with a fully preserved EF, so her heart had somehow adjusted to the lack of blood flow: all in all she was *incredibly* lucky.

Fast forward 10 months or so. She’s on the usual post HA clopidogrel, aspirin, a statin, bisoprolol (I suspect because of the PVCs whilst waiting for the angio), as well as ramipril twice a day as her BP was still high a few weeks post discharge. She also has GTN available, although insists she doesn’t have angina, purely because no one has said ‘you have angina’ even though she acknowledges she does get chest pain that responds to the spray. I’ve asked for the exact dosages, particularly of the bisoprolol and ramipril, but my mum is pretty dysfunctional, and she hasn’t given them to me. Much though I love her, she quite often only tells me what she wants me to know, or distorts/denies what’s actually going on. She’ll ignore anything that doesn’t support the narrative she wants to hear, and has real issues with the idea of having to take any medication. (This is all relevant, I promise).

Over the last 10 years I’ve become pretty medical minded out of necessity, I’ve had to due to my own long missed/misdiagnosed health issues, and that my 12yo has complex, life-limiting medical needs. We’re under 11 specialities between us, so if I didn’t know my stuff, or how to research properly, as much as I love the NHS, I’m pretty sure we’d have ended up in even more medical pickles than we have. Over the last couple of weeks, my mum has been reporting BPs as high as 170/100. She even woke up in the middle of the night feeling unwell and found it to be 164 over ‘something it shouldn’t be’ lying in bed. I subsequently found out yesterday that in her infinite wisdom, she decided to stop taking her evening meds just before last weekend - omeprazole, her statin, and the evening ramipril - basically because she didn’t want to be on ‘so much’ medication. She didn’t tell me at the time because she knew I’d kick her bum and explain to her in detail exactly what those meds are for and what could happen in the longer term, meaning that she couldn’t pretend she didn’t know it mattered when she stopped them. I have to take her word for it, but she says she’s been back on them all for the last 4 days, and out of 20 BP readings in the last 48 hours, only 7 have been below 130/90. She’s had a few in the 150s, a couple of 160s, and another 170+. To me, assuming she’s taking all her medication, this is not ‘ok’ for someone with her history, particularly when you consider she’s on an ACE inhibitor AND bisoprolol. It’s also not the first time she’s had highs, either, even when she was taking all her meds reliably, and I actually suspect they’ve been happening quite a bit for months. Having taken bisoprolol for SVT, even by itself at 2.5mg it plummeted my BP from an average, ‘perfect’ 118/78 to 70/40 on waking, with a pretty severe case of orthostatic hypotension for the lols. Last night, after I’d told her to speak to her GP on Monday about the ongoing hypertension, she phoned NHS direct and spoke to a nurse. This nurse apparently told her that her BP was absolutely fine even with her history, that it does vary throughout the day, and they’d only be bothered if the systolic was over 200...

In all seriousness, is it me? Have I missed something? Is my understanding of the situation fundamentally flawed? She’s now sitting there saying ‘well the nurse said it’s fine’, which plays in to what she wants to hear, but she also led the conversation with the fact she’s currently suffering quite badly with depression and anxiety, and from experience, that can inappropriately colour a lot of medical professionals’ opinions. If they don’t disregard you completely, they assume there’s some element of exaggeration or hypochondria. For 18 months (under the same health board area as my mum is now) I was told my symptoms were all in my head due to past depression and anxiety, when in actual fact I needed brain surgery, not once but twice. Prior to moving away, it reached a point where I felt like I could walk into our local, pretty atrocious A&E waving my severed arm around and they’d still probably look at me as if to say ‘he’s paranoid’, even though the evidence shows that I’ve only ever sought medical advice when there’s something wrong with me. I digress, but the main reason we moved was because of the poor medical care we were receiving, and I’m wondering if that’s also partly what’s happening here, although I can’t be certain how much of the history mum actually gave her, or how accurately. In any event, I currently seem to be the only person even remotely concerned that she’s got multiple readings for stage 2 hypertension when she had a heart attack less than a year ago and is fairly heavily medicated for blood pressure. Hence why I’m posting here.

Any and all thoughts and words of wisdom from you all are extremely welcome!

[Hidden]

Thank you for the measured reply - a definite balm to my last, utterly frazzled nerve. You’ve said what I was ‘hoping’ to hear, rather than that her BP is supposedly fine and nothing at all to worry about or do anything with; I was finding it hard to accept that my understanding of the situation could be so spectacularly flawed, but unless you’re actually there in the room with her at the time...she got caught out when the BHF nurse popped in whilst I was visiting after her stents had gone in. I made an innocent comment, which snowballed to reveal that she’d been very selective in what she’d told her, and the ward staff at large, about her history and symptoms.

I’ve told her she has angina until I’m blue in the face. I’ve even screen grabbed websites that confirm it and sent them to her, along with links for BHF resources that also confirm it, but she ignores those (and me). She won’t ask a medical professional if I’m right, because if she does, she knows she’ll have no choice but to accept that she does have angina, and that’s not what she wants. But I mean, who does? I’m a 36 yo single dad with an arrhythmia, inflammatory arthritis requiring a raft of immunosuppressants, bladder issues, two brain ops under my belt, and take between 8 and 15 tablets depending on the day of the week. None of that was in my life plan, but pretending the situation is different to what it is isn’t going to help anyone, least of all me or my 12yo! It turns out denial is alive and well, and looks like a woman in her mid 60s identical to my mum...

I hadn’t really thought about what she was expecting the nurse on the phone to say: as you quite rightly point out, the service was only ever going to advise her to contact her GP unless she was actually in a hypertensive crisis. It may be that she deliberately did that as a way of trying to both get me to back off, but also reinforce her own wishful thinking that her BP is ‘fine’. Whether or not they did word it as you suggest or something closer to my mum’s interpretation I’ll never know, but I can factually say that the standard of medical care where she is is pretty abysmal, so I wouldn’t rule it out completely, but you have appropriately reminded me that it’s for very good reason I rarely ever take what my mum says as gospel, and probably shouldn’t start now.

Are there any guidelines generally about BP post heart attack, as in what patients should be aiming for after lifestyle changes and medication as necessary, or is it actually the same as ‘normal’? I know an average home BP of 135/85 where there are other CHD risk factors is enough to warrant starting antihypertensives, so I was hoping there might be a similar piece of advice detailing figures whereby you should be seeking input if you’re on antihypertensives post HA. I’ve had a good look but can’t find anything, so I’m leaning towards it being the standard definition of high blood pressure unless someone else can tell me otherwise.

Anyway, thanks again, you’ve helped a lot. I am at least reassured that the issue here is definitely not me!

[Bagrat]

I have some insight into how difficult this is for you. My mother had 3 phrases in reponse to my efforts to persuade her to a course of action. " That's true" and "so you say" which both meant no further action needed and " to think it's come to this" which roughly translated meant you are my child so you shouldn't be trying to influence my decisions.

All I can say is choose your battles and parents like our children sometimes make unwise choices and all we can do is be around to support them when they do.

[Qualipop]

I would say if at all possible, you make a GP appointment for her and go with her but first send a letter to the GP detailing what you've said here so that he is clear on what she needs to be told about. Spell it out to him that she's in denial and not taking her tablets properly and refusing to believe she has angina.

[Raft]

Hi Charlie, I sense your issue is much more than your Mother's heart condition and more about your relationship.

You are both very worried about your health issues which is understandable, but there seems to be a lot of confusion and denial, caused perhaps by a lack of confidence in the medical advice you have been given in the past.

I agree with others that you need to get reassurance about her condition and medication, but I feel you need to have a conversation with her to help you understand why she does not take her medication and what are her underlying fears.

Is she trying to protect you from worrying about her and may be concerned more about your health than her own?

Not perhaps the response you were expecting but it might be worth exploring.

[Hidden in reply to Raft]

Thanks for the reply. It’s a valid point to raise without knowing my mum, but no, she’s definitely not trying to protect me, nor is it that she’s concerned about my health. She doesn’t actually know half of the health problems I have, partly because it all becomes about how awful it is for her that her son is unwell to anyone that will listen, which only reinforces some of the unhelpful behaviour we routinely see.

Unfortunately, this is all just part and parcel of entirely dysfunctional behaviour passed down both genetically and via practical demonstration through several generations: there’s a long history of personality disorder in the family, and whilst I would hesitate to armchair diagnose anyone with anything, she is also a textbook case, she just won’t acknowledge that her behaviour is hugely problematic. Which I suspect is mostly because if she acknowledges her behaviour is dysfunctional, then like those in the family that have already successfully sought treatment for their mental health issues, it means she’s responsible for her actions and doing something about it, rather than being able to blame everyone else for her situation and the way she behaves as she does currently.

[Ianc2]

My BP is usually around 140/80 and I get a variety of comments from various medics saying it is too high. However I also had a fainting event last year (syncope) after which my Cardiologist commented that there is some research showing that trying to get BP down to lower levels in elderly people can be linked to falling down. Interesting.

[Raft]

Thanks for your response Charlie, not sure this forum will be of much help to you as the family issues will confuse the medical reality.

I was invited to respond because I had previously mentioned my experience of Ramipril and bisoprolol on earlier forums.

I am on 5mg of Ramipril and have been for about 10 months and I find that it helps me from becoming breathless upon climbing hills and stairs. My BP is fairly constant and has never fluctuated in the way your mother's has.

The Bisoprolol was brought down from 2.5mg to 1.25mg soon after I started on it as my GP felt that it would make my heart rate too low.

I also take Apixiban to reduce the risk of stroke and to act as my anti coagulant.

To put all of that in context I am male, 81years old and have been checked regularly for a valve problem over the past 25 years. So I was surprised to be diagnosed with heart failure last May at one of my routine checks, but told that my valve problem was minor !

I know from personal experience how difficult it can be to get a close relative to see that their attitude is not helping themselves, but my final words would be to take care and look after yourself.