I am between a rock and a hard place......

CariadAgain

Thanks for that.

Have had a scout-around generally and found - on recent guidelines - that basically the NHS reckons on starting to treat people if blood pressure goes over 140. So - I'm okay personally - as mine hovers around 140 and the way it goes up to way over that with a doctor is, I think, probably down to "It's a doctor - and it's post 2021" and I feel worried/tense just being near one now...I know it's not a rational thing (as they can't touch me with a needle without my consent ....) but that's how it is ....and one can't argue with emotions that are "on guard - ready to run".

I am no doctor, so I can't give medical advice. If you're happy with systolic BP of 140, that's fine, but any self-respecting GP would tell you it's too high.

FWIW for years, my BP was consistently between 130 and 140/85-95 even with my heart monitor. I refused medication because, like most people, I didn't like taking meds. Then I had a heart attack and I changed my mind. Being in an ambulance being told you're having a heart attack (and thinking you're going to die) focuses the mind. I already had a fairly healthy lifestyle, so there wasn't much I could change, except to try and be less anxious and focus on getting enough sleep.

Since 2017, I've taken a low dose statin and BP medication (candesartan - an ARB) and my BP is now consistently between 110 and 120/70 and 80. I have not noticed any side effects. If my systolic BP were to return to 140, I'd be making an appointment with my GP like a shot.

Personally, I think you're in denial about your BP, but it really is your personal decision.

Once I know he's there I always check at the desk (again) to see if he's actually in clinic (in case he's been taken off for emergencies). I say I only want to see him and am happy to come back another day if necessary.
I did once have to go away but they put me in for the next week.

🤞 for you.
I do understand that an excellent cardiologist can't see everyone and that juniors need to learn. I'm OK to have students sit in. I just want the person who truly understands me to lead any plan!

I first saw him 20 years ago when he was obviously much younger.
I intend to ask him sometime soon "if I were your mother (or aunt) who of the next generation of cardiologists would you suggest I see in future".

I'm lucky that he's still doing research so still pretty forward looking. He is not as young as he was though!

Thankfully I too have found a consultant who seems to understand the problems and who put the pacemaker in. I have been in indirect email correspondence with him via his secretary and he has tweaked meds that way. I may follow up on the suggestion to ring and make sure he will be there on 8th when I have my appointment as I would prefer to see him. In the course if several admissions I have seen about 5 different cardiologists, one of whom was very rude, and most of whom just give me more meds regardless of the side effects I have been getting. Thanks for the suggestion.

The stent was put in for blocked artery and this means I am not allowed some of the drugs that might deal with my AF which is frustrating. Stent itself is nonproblem and I am glad if it .... as I am sure you are!

This wasn't supposed to be preachy Luckygirl

Just how I've done things.

Luckygirl can I please suggest that you call your consultant's secretary before you go to check that he/she is personally in clinic?

I do this now after having seen "one if his team" who wasn't as knowledgeable as my actual consultant. I now don't go in if he's not there personally and his lovely secretary helps me to go very soon after.

He knows me, is prepared to spend time with me, explains his thinking (and any options).
My heart is "irregular" but consistently so.

He has put me on a "call me within the year for a follow up" so I do that. If I feel I need him I just email his secretary. He has called me if I email just a question. He has written to my GP re drugs.

I think you need one person who is "on your side" and who knows you.
I do hope you can get the help you truly need. If you think you trust them I'd start to build a real relationship with your consultant.

I couldn’t get on with bisoprolol so now I take Carvedilol twice a day with no side effects. I also stopped taking statins as they made my legs ache. I recently had a blood test so will be interested to see how my cholesterol is.

Thanks for that.

Have had a scout-around generally and found - on recent guidelines - that basically the NHS reckons on starting to treat people if blood pressure goes over 140. So - I'm okay personally - as mine hovers around 140 and the way it goes up to way over that with a doctor is, I think, probably down to "It's a doctor - and it's post 2021" and I feel worried/tense just being near one now...I know it's not a rational thing (as they can't touch me with a needle without my consent ....) but that's how it is ....and one can't argue with emotions that are "on guard - ready to run".

CariadAgain This is the most recent NHS guidance on blood pressure.

www.nhs.uk/tests-and-treatments/blood-pressure-test/#:~:text=normal%20blood%20pressure%20is%20considered,pharmacy%2C%20GP%20surgery%20or%20clinic)

It's up to you what you do about it, but your GP has a duty to give you the best advice. Nobody can force you to accept treatment.

Luckygirl3

When you say a regulator, which drug do you mean?
My situation is complicated by having more than AF ... a stent after a bit of a heart attack, a pacemaker for sinus node disease.

Luckygirl I'm not sure that the stent on its own causes any problems. I had a stent fitted after I had a heart attack and it honestly hasn't caused any problems. In fact, I noticed almost immediately how much more energetic I felt. I guess my artery had been narrowing for a while, which is why I felt so rough for a week or so before the heart attack - my heart just hadn't been getting enough oxygen. I would have thought it's your other issues which are causing the problems.

CariadAgain

SynchroSwimmer

There is an active British Facebook page OP that might be helpful?

My close friend is on there and reports seeing many people where the meds are disagreeing with them, the numerous side effects and medications causing poor quality of life. My friend seems to learn more from there than he does from his clinicians.

(He is of slight build, light weight, never had high blood pressure - but they are insistent on reducing his BP to such a low level that he is dizzy, faint, at risk of falls and barely functioning…)

Any chance please of the name of that FB page your friend is on?

I certainly still feel like I need other input re the heart stuff they're telling me I now have. Tiny little example - they've got me on measuring my blood pressure for a week and, as far as they're concerned, I'm being told it should be 120/80. My own googling has revealed that 150 for the first figure is fine under new guidelines (2013 ones) they now have for the 60 plus age group. They'd have me worried that it's around 140 - but the new guidelines tell me it's fine at 150 - and so I'm okay on that!

Sorry, but I've just had a diabetic/cardiac review and the NHS handout I was given states that a systolic blood pressure reading of 150 is Stage 2 high blood pressure.

Could you signpost those guidelines on BP please cariad.? I’m currently in the report BP daily for a week process and would like to be forearmed! Many thanks.

SynchroSwimmer

There is an active British Facebook page OP that might be helpful?

My close friend is on there and reports seeing many people where the meds are disagreeing with them, the numerous side effects and medications causing poor quality of life. My friend seems to learn more from there than he does from his clinicians.

(He is of slight build, light weight, never had high blood pressure - but they are insistent on reducing his BP to such a low level that he is dizzy, faint, at risk of falls and barely functioning…)

Any chance please of the name of that FB page your friend is on?

I certainly still feel like I need other input re the heart stuff they're telling me I now have. Tiny little example - they've got me on measuring my blood pressure for a week and, as far as they're concerned, I'm being told it should be 120/80. My own googling has revealed that 150 for the first figure is fine under new guidelines (2013 ones) they now have for the 60 plus age group. They'd have me worried that it's around 140 - but the new guidelines tell me it's fine at 150 - and so I'm okay on that!

Thanks for all the suggestions. I appreciate them, but am sorry that so many people share this juggling act.

When you say a regulator, which drug do you mean?
My situation is complicated by having more than AF ... a stent after a bit of a heart attack, a pacemaker for sinus node disease.

Hello lucky -sorry you’re finding the costs outweigh the benefits of medication
I have permanent AF and take a regulator, statins and blood thinners. I couldn’t manage beta blockers, absolutely no energy, my cardiologist said they’d slowed me down too much.
I used to have six monthly or annual reviews but as I’m not in crisis, I was discharged 18 months ago. I’m to be referred back by my GP if needed
The wait list is endless. I feel id benefit from a review as I’m finding inclines make me breathless. The hot weather arrrgh. As I’d wait weeks to see the GP then months for cardiology I’m putting up and shutting up
Like you and many others 😀

I feel your pain

10mg of bisoprolol and 125 mcgs of digoxin keep my HR in acceptable levels but sap my energy level and my pacemaker stops it being much too low ( I've got LBBB and heart block) so after a 10 month wait I'm having an AV node ablation on Friday. Would this be a possibility for you? Hopefully I'll be able to come off the bisoprolol and digoxin and get rid of the side effects. It won't cure anything but I should have a better QOL. Anyway it might be worth raising it at your appointment. I think you already use the BHF forums but it might be worth doing some research on there if you haven't already. Good luck. This weather isn't helping I'm so much better when it's cool.

Oh Luckygirl, I couldn't pass by without sending you a virtual hug. Your frustration is entirely to be expected given your situation.
I hope that your next appointment can offer you some helpful advice re the balance of medication/ side effects.

There is an active British Facebook page OP that might be helpful?

My close friend is on there and reports seeing many people where the meds are disagreeing with them, the numerous side effects and medications causing poor quality of life. My friend seems to learn more from there than he does from his clinicians.

(He is of slight build, light weight, never had high blood pressure - but they are insistent on reducing his BP to such a low level that he is dizzy, faint, at risk of falls and barely functioning…)

I have been back and forth to GP and on one occasion A&E with weak, heavy, numb legs. I have just looked up rosuvastatin, which I am taking, and guess what? - it is known to cause precisely this. No-one even suggested it might be drug-related. I plan to give myself a break from it and see what happens. My cholesterol is not going to suddenly hit the roof.

Sorry, I'm dozy! Took an anti-histamine.

I hope the appointment on the 8th will prove useful.

Luckygirl3

Some of you have summed up how I feel. I am now on a very small dose of a beta blocker (after trying a whole raft of different drugs) but still flaked out all day and very very nauseous with headache. Have cardiology appt on 8th July and will discuss with him the options going forward. Living like this is not one of them as far as I am concerned. I am interested that others have made the choice that I am teetering on the brink of. Life like this us too miserable.

Well, taking medication for one thing can cause other problems, I know. However, I do think you need to see someone in the Cardiology Unit fairly urgently. I hope you're getting regular checkups. There must be something better you can take and
It's no good just living half a life, it's just misery.

I’m sorry that things have not improved since your last thread about Bisoprolol, Luckygirl. It’s so frustrating when trying to solve one problem just creates another one.

I hope you get some answers and relief from the unpleasant side effects before too long.

When untreated my AF is 50% of the time.

Some of you have summed up how I feel. I am now on a very small dose of a beta blocker (after trying a whole raft of different drugs) but still flaked out all day and very very nauseous with headache. Have cardiology appt on 8th July and will discuss with him the options going forward. Living like this is not one of them as far as I am concerned. I am interested that others have made the choice that I am teetering on the brink of. Life like this us too miserable.