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

(66 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?

Luckygirl3 Fri 27-Jun-25 14:01:56

Peacemaker! - pacemaker!

blue14 Fri 27-Jun-25 14:06:58

I am so sorry you are experiencing all these problems.

Have you discussed this with your GP or heart specialist? Maybe they could suggest a different medication or even to take the medication at a different time of day.

I cannot help in anyway other than to say I'm thinking of you and hope you get some helpful, kind advice.

Luckygirl3 Fri 27-Jun-25 14:17:09

That is kind of you. I have had several changes of medication and have had problems with all of them. The one that actually works to control the AF a bit renders me weak and nauseous.

And I have led a blameless non-smoking, non-drinking, healthy diet life. Wish I had just got pissed while tucking in to the chips!

GrannyGravy13 Fri 27-Jun-25 14:19:03

I have no solutions but wanted to send you a virtual (((hug)))

blue14 Fri 27-Jun-25 14:21:20

I'm laughing at your last sentence!
Life certainly seems so unfair at times.

It might mean taking more medicine but what about something to ease/stop the nausea?

ExDancer Fri 27-Jun-25 14:30:54

They gave my husband some tablets called cyclizine to ease his nausea, I believe the drug is used in lots of travel sickness remedies. Worth asking your GP?
He has atrial fibrillation and has had his heart stopped and re-started a couple of times to try to get the beats to synchronise, but it didn't last.

Charleygirl5 Fri 27-Jun-25 15:31:15

I think you should consult with someone on the cardiac team, but if your area is like mine, that will be a year from now, in June or July.

lafergar Fri 27-Jun-25 15:35:23

I'm sorry, I don't have any medical knowledge.

Could you go private and ask these questions?

Sorry for your dilemma and that it is impacting your life.

AGAA4 Fri 27-Jun-25 15:43:04

Sorry you are feeling so unwell. Hope you can get some help soon. 💐

Cabbie21 Fri 27-Jun-25 16:03:04

Could you go on the BHF website? ( British Heart Foundation) they have a number to call I think to speak with a cardiac nurse.

Lathyrus3 Fri 27-Jun-25 16:13:38

I decided to stop the drugs and just fibrilate.

It varies anyhow. Some days I’m normal 95% of the time and live an ordinary life (just been out for the day!). Something I couldn’t have done when I was on the drugs.

Other days my heart is all over the place. Fast, slow, irregular and I have to moderate myself. Book and pottering days.

I am aware that I’m probably shortening my life by straining my heart but
a) I’ve had a fairly long life anyway- certainly by my family’s standard
b) there really wasn’t much point in a life sitting on the sofa, feeling dreadful and unable to do anything except want to sleep.

I do sympathise with the dilemma. It’s hard to make anyone understand how awful the drugs make you feel. Jst thoughtbId tell you what I’ve decided.

Oreo Fri 27-Jun-25 16:42:31

I think that’s a good balanced decision Lathyrus3 and I know I would do the same.It’s not quantity of life when older, it’s all about the quality.

Allira Fri 27-Jun-25 16:45:25

Lost my post!

If the pacemaker is keeping your heart rhythm steady because of AGF, could it be you might need a lower dose of the drugs or they need adjustment? Were they prescribed by the Cardiac Unit or your GP?

Have you been for a checkup on your pacemaker recently too?

Can you phone your GP and ask for an urgent review of pacemaker and an appointment with the cardiology department?

If you like, I'll be over with a couple of bottles later! 🍾🍾
And fish and chips.

Allira Fri 27-Jun-25 16:45:49

AF not AGF (whatever that is)

Lona Fri 27-Jun-25 16:57:00

I have AF and I am unable to tolerate any medication that is required daily, as I get migraines after a few days. I've tried many times to explain to the doctors that I can't live with daily migraines but they just don't believe me.
They are convinced a different tablet won't affect me. I know my body better than they do!
So, for 5 years I've just used beta blockers on the odd occasion when my heart has started racing.
I'm 79 and not prepared to spend the rest of my (maybe short) life, just existing with migraine pain. Doctors can't help me.
I do feel for you Lucky.

Luckygirl3 Fri 27-Jun-25 17:26:44

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.

Luckygirl3 Fri 27-Jun-25 17:27:41

When untreated my AF is 50% of the time.

merlotgran Fri 27-Jun-25 18:16:30

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.

Allira Fri 27-Jun-25 18:55:56

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.

flowers

Allira Fri 27-Jun-25 18:56:49

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

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

Luckygirl3 Fri 27-Jun-25 23:01:04

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.

SynchroSwimmer Fri 27-Jun-25 23:27:15

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…)

Chocolatelovinggran Sat 28-Jun-25 07:23:16

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.

foxie48 Sat 28-Jun-25 08:27:39

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.