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

(67 Posts)
Luckygirl3 Fri 27-Jun-25 14:01:26

I have several heart problems: sinus node disease (for which I have a peacemaker), a bit of a leaky mitral valve, coronary artery disease (for which I have a stent following a bit of a heart attack a year ago) and atrial fibrillation which is proving hard to control.

The drugs for the AF make me feel truly awful, to the point where I have little in the way of quality of life. Lots of different ones have been tried with similar results. I feel nauseous and have headache and total weakness 24 hours a day. I spend a lot of the day lying down. The temptation to heave the drugs in the bin and just let the AF run its course is very great.

Anyone else in a similar bind?

lafergar Mon 30-Jun-25 17:41:43

Bit left field ( sorry about the left bit) but acupunture may be of some benefit perhaps?

growstuff Mon 30-Jun-25 17:49:02

dalrymple23 When you say "minor heart attack" do you mean NSTEMI, which involves only a partial blockage?

You've been unfortunate with the side effects. I had a STEMI, which is a total blockage, had a stent fitted to unblock the artery, was prescribed similar drugs to you (and more) and can honestly say that I've never felt fitter.

I had one change of medication from an ACE inhibitor to an ARB because the original caused a cough.

Have you had your legs checked for PAD? There was a reason you had a heart attack and those causes should have been addressed, especially as you have AF. Your breathlessness should be investigated because medication shouldn't cause that.

It's been quite a journey for me. I used to be sceptical about taking medication, but I now take everything I'm prescribed. However, I do have six monthly reviews (and have done since 2017). I've realised that some of my symptoms (and what I thought were side effects) are actually the result of my medical issues. I've had to deal with two distinct cancers - the hormone therapy I have to take for five years has caused more problems than all the other medications combined, but I'm willing to accept hair thinning to reduce my risk of cancer returning.

Luckygirl3 Mon 30-Jun-25 17:54:25

I am sorry you have had so many medical problems growstuff.

I did have an NSTEMI ... the right coronary artery was blocked to 94% at oe place so I had a lucky escape.

Luckygirl3 Mon 30-Jun-25 18:13:14

I too am confused as to how many of my problems are drug induced and how many due to the underlying problems.
I do not have any angina so presumably the coronary artery disease is less of a factor.

foxie48 Mon 30-Jun-25 18:16:34

I had an interesting conversation with my consultant ie it's really difficult to separate what are side effects of medication, what is caused by my medical condition and what is due to being mid 70's. His comment was along the lines of, doctors can also find that difficult! I accept that there are pros and cons in taking drugs but I take the view that if I don't give them a proper try, I'll never know if they improve my QOL or not. Heart arrhythmias are very common, especially as we get older and also come with other heart issues. fwiw high BP is one of the main causes, I've had periods of high BP, never particularly high but enough to do damage without me even knowing that there was an issue. I now take medication to keep it iro 120/70 as I don't want any more damage.

growstuff Mon 30-Jun-25 18:52:29

Luckygirl3

I am sorry you have had so many medical problems growstuff.

I did have an NSTEMI ... the right coronary artery was blocked to 94% at oe place so I had a lucky escape.

I don't deserve any sympathy. I know I have a number of issues, which is why I'm regarded as high risk, but I honestly feel fit and well. The heart attack was a wake up call to get my life in order. I already ate well (appropriate for my T2 diabetes), I wasn't overweight, I didn't smoke or drink alcohol, but I was always stressed/anxious about something, I wasn't sleeping well and I didn't do enough exercise. I have calcification in my arteries, which can't be reversed, but I can try to prevent from getting worse.

I have my check ups and everything is always fine. I'm treating the symptoms I can treat and just accept the rest for what they are.

growstuff Mon 30-Jun-25 18:53:45

Luckygirl3

I too am confused as to how many of my problems are drug induced and how many due to the underlying problems.
I do not have any angina so presumably the coronary artery disease is less of a factor.

Coronary artery disease is usually a huge underlying factor (from what I've been told).

growstuff Mon 30-Jun-25 18:54:50

I agree with you foxie. It sounds as though you have a good and honest consultant.

growstuff Mon 30-Jun-25 19:01:48

Sorry ... don't mean to monopolise this thread.

It's worth mentioning that I was very lucky. I had a STEMI. I was told that it's critical that heart attacks are treated quickly - and mine was. I called 999 and my stent was fitted within an hour. Apparently, 90 minutes is the cut off. If it's left any longer than that, there's a high risk that the heart will be irreversibly damaged.

Subsequent echos have shown that I don't have any heart damage, so I shall always be grateful for having a heart attack within a few miles of Papworth Hospital and the excellent service provided by the ambulance service.

A warning to everybody that if you think you're having a heart attack, ring 999!

Luckygirl3 Mon 30-Jun-25 19:11:02

I thought I was having a heart attack and went to an A&E whilst on holiday in Wales having spoken to 999. The hospital sent me home! A week or so later the same thing happened and my local A&E admitted me and a stent was fitted. Hmmmm....

MayBee70 Mon 30-Jun-25 19:18:59

Luckygirl3

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.

When I worked at the doctors we always advised patients that statins could cause muscle pain and that they must see a doctor if that happened. It worried me because, at the time statins were being advertised as an over the counter medication that people could just go out and buy ( not sure if they still are?).

POW1 Mon 30-Jun-25 20:14:45

I had a coronary artery split which caused a heart attack 6 years ago. Treated with loads of drugs, some of which are lifelong. I’ve lost count of how many I’ve swapped out because they’ve caused adverse reactions. Recently I’ve started to react to the calcium channel inhibitor which keeps my blood pressure low. They are giving me horrible swollen and discoloured feet and legs. Sometimes I can’t get shoes on. I am struggling to get doctors attention. I’m a full time carer for my DH who has Parkinson’s & dementia, so mucking about organising blood tests, blood pressure readings and waiting for another routine appointment are just too much for me to manage. I really sympathise with the OP - coronary care is really difficult to access.

Mamma66 Mon 30-Jun-25 20:33:36

I developed heart failure because of COVID. My Cardiologist identified that if my AF could be managed I would no longer be in heart failure. I take Bisoprolol (which I assume is what you are taking?) It was awful at first. My Cardiologist reduced the dosage which helped with the nausea (as did ice lollies) and then split the dose so I take the same amount a day but in a small morning dose and a larger evening dose. That has helped considerably. Talk to your Cardiologist and see if anything could be done. Good luck and wishing you well 💐

Plevey08 Mon 30-Jun-25 21:22:56

I have AF and I take one of the newer blood thinners called Apixiban. I don't experience any side effects. Just wondered why you haven't been offered them.

growstuff Mon 30-Jun-25 23:05:29

Luckygirl3

I thought I was having a heart attack and went to an A&E whilst on holiday in Wales having spoken to 999. The hospital sent me home! A week or so later the same thing happened and my local A&E admitted me and a stent was fitted. Hmmmm....

NSTEMI doesn't show up on an ECG in the same way a STEMI does. Blood tests will usually show elevated troponin levels. Delays seeking treatment sometimes won't show that a patient has had a heart attack. Maybe the Welsh hospital was at fault for not administering the right tests, but it sounds more likely that it was a grey area.

Luckygirl3 Tue 01-Jul-25 08:47:51

At the Welsh hospital visit I had previously had an exercise test that clearly showed coronary artery disease and I was awaiting an angiogram. I explained this when I presented there with chest pain, breathlessness and in AF. They tested troponin and it was raised ... not massively but above normal. And still they packed me off to holiday accommodation on my own.

After being treated with stent back home I contacted the Welsh hospital and they reacted very quickly and throroughly and sent me the documents outlining all this. They cincluded that they had failed to follow their own protocols, and they revamped these to try and prevent this happening again. They set up new training for A&E staff and use my case as an illustration.
I was impressed by how thorough and open they were. They did not try and cover anything up. I had already told them I had no interest in suing or complaining but that I just felt they should look into it which they did and I was impressed.