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

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 😀

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.

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

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!

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.

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.

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 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.

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 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.

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.

This wasn't supposed to be preachy Luckygirl

Just how I've done things.

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!

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.

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!

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.

Luckygirl3

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!

My stent was also for a blocked artery, but I don't have AF. The stent isn't a problem, but I still get monitored for conditions which caused the blocked artery in the first place. In my case, diabetes and raised blood pressure and cholesterol.

growstuff

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.

Each to their own.

I've worked out a programme of specifically heart diet supplements - including the top 4.

Admits I'm struggling with just how much is wrong with my body - I'm counting 11 things (!) including the heart thing. I've watched other peoples lives being overtaken by dealing with health/dealing with health/yet more dealing with health and what's left for themselves doesn't look like very much to me.

So I'm having to prioritise - I'm starting with urinary problem stuff, my feet (taken over a year so far - but I'm hoping today's appointment is the last one/end of that pain and footwear restrictions), heartburn. So I think "heart" is about no. 4 on the list - and there'll still be: deaf in one ear, fitness, figure, missing sense of smell, hair gone flimsy, cosmetic skin blemishes (which I've long been prone to) to deal with after that.

Quite a list - and so I'm basically going for what should be "quick wins" to start with. My own circumstances are that I have no "responsibilities" (not so much as a pet cat - I just encourage neighbours cats I like), I'm in my 70's, live on my own (so there shouldnt be anyone to hand if there's a heart attack - that might forget I've given everyone instructions NOT to revive me if...).

So - we've all got different circumstances and different priorities and different level of "will to keep living (on Earth)" and I've read the statins side effects. Each to their own - but I've had doctors over the years tell me something was incurable (I got rid of it), tell me work illness was "my own" illness (I proved it was work illness and I got rid of it), etc.

I haven't had time to read all these replies so apologies if someone has already suggested this.
Have you had or thought about having a cardiac ablation?
I had one a few weeks ago and I haven't had any AF or SVT episodes since.

TattyBluebell

I haven't had time to read all these replies so apologies if someone has already suggested this.
Have you had or thought about having a cardiac ablation?
I had one a few weeks ago and I haven't had any AF or SVT episodes since.

I am glad that this is proving successful for you. It is there in the background as a posdible option and the more that the meds prove problematical the more likely it becomes. I already have a pacemaker.

Iam64

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 😀

My husband has heart failure and takes a cocktail of drugs to keep him going. He's slowed down a lot but doesn't really feel too bad.
Where we lived before he used to have regular GP blood tests and annual visits to the hospital, but they're not so thorough here. He had regular clinics with the Cardiac nurse but, like you, has now been discharged and the nurse told him that she was leaving and was unlikely to be replaced.
I was much happier when he saw somebody regularly, how else would he know he was starting to become unwell again? I think that the Cardiac nurses know a lot about the medications because they see so many patients, but locally they're obviously a victim of cost-cutting.

cc, I expect your husband would benefit from an annual review. It’s clearly an attempt to reduce waiting lists. I wonder if it’s cost effective as routine reviews ensure our meds are still appropriate.
I was only referred to Respiratory where mild cope was diagnosed after my cardiologists treadmill test confirmed what I’d been telling my GP for a couple of years, ie I’m soon breathless on inclines. I was prescribed inhalers, then discharged to be referred by my GP if necessary. I’m finding inclines harder but can I be bothered to go to the doc! Nope

Have a look on Ethical Nutrition's website. They sell Magnesium Taurate for heart health. There are articles on their website about on
AF and Magnesium Taurate - very interesting. Lots of reviews saying that it helped them with AF. I left a review after 4 weeks without my AF - only problem is I had AF the very next day. I do still take it. A Dr S Gupta also recommends Magnesium on his website- he is a cardiologist at York Hospital. I had a pacemaker fitted June 2024 - did nothing for my 10+ years of AF. I would have weekly episodes that would last for 18 hours unable to do anything. I decided I was too old to wait for the NHS so went private for my ablation in November last year. It can take up to 6 months to feel the full benefit. I am still on the maximum dose Diltiazem. I do still have a mild flutters but nothing like before and it does not stop me doing anything. Hope this message gives you hope for the future.

I don't understand why people are prepared to spend good money on supplements which haven't undergone the rigorous testing which prescribed meds have.

This thread has been fascinating and so informative. I had a minor heart attack in 2022 and was put on the usual cocktail of drugs (Bisop, Apixaban, Lansopralol, Rosuvastatin). The side effects are horrendous. I can barely walk because of leg pain (I would quite like to see the other side of my new garden!) and have not been to a shop for 18 months. Fatigue is overwhelming. The hair loss is depressing and weight gain even more so.

Went to see a vascular surgeon who advised changing the statin. GP refused. In fact he said and I quote verbatim "I only ever read the first paragraph of a consultant's letter". He went on to say that GPs have a more holistic approach and specialists tend to have narrow minded vision.

How does a mere mortal deal with that?

I keep having AF episodes which wipe me out for a day (and are painful). I use the good old GTN spray. Cardiologists at the local teaching hospital have said that I do not fit the criteria for a referral, so they won't see me. I wonder what the GP said in his referral letter? Am suspicious.

I agree with previous posters - there is no quality of life. I sit here and vegetate - I get breathless just pulling on my socks or opening a can. This is not normal.