My wife is 70 years young and has been suffering with Paroxysmal atrial fibrillation since 2011.
In addition she also has...........
Osteoarthritis - no medication other than Paracetamol.
Osteoporosis - takes Calcichew D3 Forte.
Asthma - uses a Salbutamol inhaler and a Clenil Modulate inhaler.
Mitral Valve regurgitation - no medication.
Under active Thyroid - Levothyroxine - 75mg and 100mg on alternate days.
plus a daily dose of Atorvastatin 20mg, Rivaroxaban 20mg and a B12 tablet - Cyanocobalamin 50mg.
Fortunately she only has 2 -3 episodes of AF a year but unfortunately at least one of these episodes results in a trip to A&E.
A couple of weeks ago an episode resulted in a 4-day hospital stay as she also had a chest infection at the same time and was given a course of antibiotics. Unfortunately she cannot tolerate Penicillin which I understand is the best antibiotic.
However, in less than a week after being discharged she was admitted again with another mild AF episode but in addition was diagnosed with 'Hospital Acquired Pneumonia'.
She was given a stronger dose of antibiotics and discharged after another 4 days.
This time round she has been prescribed VERAPAMIL 40mg (three times a day) and DIGOXIN 125 (once a day) as an ongoing regime to slow her heart down.
My wife is suffering terrible side effects with these new drugs, exhaustion, trouble breathing, dizziness, aching muscles, general lethargy and it makes her asthma inhalers less effective. As a result we have booked a telephone appointment with our GP for tomorrow to discuss this as she has now stopped taking them.
I understand that this forum is not a substitute for professional medical advice but have any other forum members ever had a similar experience and how was it resolved?
Thanks in advance for all responses.
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It’s not unusual for AF to be triggered by infection. I’ve never been in either Med but have strong intolerance to any heart rate or rhythm drug so I haven’t taken any drugs other than anticoagulants for 6 years, the ‘cure’ is worse than disease for some of us.
Did her regular cardiologist prescribe these drugs? In her position I would be asking for a review, GP often todo not have the competence skills to alter secondary care prescribing so may be reluctant to change anything without advice from cardiology.
Purely a personal opinion, but if you feel worse after taking a Med then I would also stop taking them. The only times I have ever regretted not doing something was when I was ‘persuaded’ to take heart meds that made me feel worse.
I was told that any medicine ending in 'pril' is not a good mix for asthma sufferers fir a start off.
I agree with CD GPs are not necessarily the best person to be prescribing heart medication . Cardiologists or even better an Electrophysiologist have the specialist knowledge.
I have the feeling that digoxin is rather an old fashioned drug but could be wrong on that . I take Flecanide for rythym .
I think your wife needs a review of her medication. A good GP should be perfectly capable of doing this with advice from a cardiologist if necessary. I strongly agree with the advice given by the others who have responded that if the medication makes you feel worse than the PAF what impact is that having on your quality of life.
Oh dear - life can be difficult. Oh to be young again, eh?
Your wife's symptoms sound as if she might still be getting over her second bout of pneumonia which would surely have affected her airways and maybe exacerbated her asthma . I suppose there's a chance she's still having fibrillation - although the hospital would have mentioned this.
Digoxin is a well-tried drug that can be very useful in reducing heart rate. During spring last year, it proved the only drug that would help me and I had no side effects (although I was feeling utterly weakened and awful from my atrial flutter at the time). I've never been given a calcium antagonist like verapamil; these are, I gather, given as an alternative to a beta-blocker when those can't be tolerated. I would ask you GP about why this was given.
My own experience of GPs is very different from others here, it seems. I've found that they are especially well trained and experienced in heart issues and can help a great deal - but if yours seems not to be helpful, then I would phone your wife's consultant's secretary and explain her situation.
I expect that her situation will settle as time goes on as it's quite soon after the pneumonia. That's the usual course with these things but caution is always best so I do hope your wife's GP proves helpful. It's a truly frightening thing to feel dizzy, breathless and weak.
If I’m reading this correctly, it sounds like these new meds were prescribed by the hospital. If so, I’d be very wary, unless they were ordered by an electrophysiologist, or at least a cardiologist. A while ago, I ended up in hospital with severe gastroenteritis where my potassium got so low that it kicked off an AF episode. I was kept overnight, and in the morning rounds a doctor came in and told me he was changing my meds. I politely declined, said I would discuss any needs with my electrophysiologist. He was extremely dismissive, rude and truly miffed that I dared to question him. Alas, I heard him say much the same to a very elderly lady, when he said he was taking her off anticoagulants, I dread to think what happened to her, as she was in no position to speak up for herself.
I asked someone who this doctor was, and his specialism. He was from Medicine, it was just his turn at being on duty that day. I researched the drug he was prescribing, it turned out to be one that is very rarely prescribed in this country any more, it can have very serious dangers. You are so right to be questioning what your wife has been given. I find with this horrible condition you very much have to have your wits about you, and be your own advocate. Too many doctors still haven’t heard of the informed patient, and you need to be brave and question everything if you’re faced with one. My lovely GP freely admits he knows almost nothing about AF, and leaves me and my EP to get on with it.
My goodness , I’m thinking that elderly patient being taken off anti coagulant treatment ! May I ask what hospital that was in case I ever end up there ?!
As far as I know she was given just the Digoxin and Verapamil.
I usually study the meds when visiting and keep copious notes of all medical details for my wife's medical issues. However in the current situation with no hospital visiting allowed I can only rely on the Discharge Summary.
You said she was given antibiotics. Perhaps if they were not continued after discharge they would not be on the Discharge Summary. There should be a way to find out what antibiotics were given.
I have persistent AF. I could only take low dose digoxin - tried bisorpolol and verapamil and a couple or more other drugs when my AF was diagnosed 3 years ago but couldn't tolerate them - I was in the position of being too breathless to walk down stairs on one of them - think that was either verapamil or bisoprolol. My second cardio put me on digoxin but a higher dose and put me on the waiting list for a cardioversion, Just a month before my first successful cardioversion (which lasted 11 months) I found out that a friend of mine was on a lower dose of digoxin and I was already starting to get similar problems with the digoxin so asked GP to change which she did and I felt much better for those last few weeks. I have had two successful cardioversions since and am still in NSR after the last one in Feb this year and am on the waiting list for an ablation. I have never been put back on digoxin even in the short spaces of time between my other cardioversions and have been OK. It seems I am better off with just apixaban as an anticoagulant. The worst thing with me is not being able to take stronger painkillers NSAIDs and anti inflammatories as sometimes find it hard to control back and neck pain effectively. Still, its better than the alternative.
Thank you all for your responses which are helping us formulate our discussion with our GP this evening. Unfortunately it's a phone appointment due to current situation.
I will add an update after our discussion.
Thanks again everyone.
I took Digoxin and Quinidine from my first A Fib attack and hospitalization in April 1986 until April 1998 when I went for a routine check up. My doctor suddenly announced he was taking me off both because they were "terrible drugs." Mind you this is the same guy who wrote refills for them every 6 months for 13 years! We were flabbergasted!
He told me to up my Vitamin C intake, based on a study out of Tehran, and to take fish oil. I do have to say, that on this combo my A Fib episodes were no worse than they were while taking the Digoxin and Quinidine, so it obviously the drugs didn't do me much good. I had to have bloodwork done regularly when on Digoxin because of the risk of developing a low platelet count. I had fatigue the entire time, and had really bad anxiety and just felt miserable. My heart rate was very slow and my heart beat pounded so forcefully with each beat. I was very glad to see the end of those drugs because the quality of my life really suffered.
After about a year with just C and Fish Oil I was given Verapamil as my PIP and it worked quite well for several years until one day it didn't work anymore. But, since I was only taking it occasionally for A Fib Episodes, I had no side effects, that I noticed, from it so I would bet your mom's symptoms are from the Digoxin.
I went from Verapamil as my PIP to Flecainide as my PIP. I have used Flecainide successfully for 15 years as my PIP with all episodes resolving within a few hours. In the US they recommend starting Flecainide only in a hospital telemetry unit, with several days of monitoring. to make sure you don't have any if the possible cardiac side effects. That is how mine was started: first a loading dose, and then 100 mg 24 hours later. However, once I got out of the hospital and tried to get back to normal life, I quickly realized I could not function on a daily dose of 100mg because my heart rate was hanging in the high 30's. Back to the doctor for another EKG and I came out with instructions to use it as my PIP.
Now that I have cut carbs out of my diet, I haven't had any episodes in about 18 months, other than my feeble attempt to prove to my wife that I could still eat carbs. I still get my prescription refilled regularly and take the pill bottle with me when I will be out of the house longer than 3 hours, but I haven't taken any in a very long time. But, when I did have episodes I notice that the freshest batch of pills worked the fastest, so I get them refilled every few months, even when not taking them. It just makes me feel better knowing if I have an attack it will work quickly.
I don't think your Mom should stop taking any drugs without consulting with the prescribing doctor first.
I had a telephone appointment with a new GP at our practice and she mentioned that I hadn't renewed my flecainide prescription for a long time. I explained I now only use it as a PIP and she told me to check the expiry date - it was March last year. She issued a new prescription immediately and told me to dispose of the others. So it sounds as if you are doing the right thing in using fresh medication.
I learned quite a few years ago that the fresher the Flecainide, the shorter the duration of the incident. I see the cardiologist every 6 months and every visit he gives me a new prescription with 6 refills. I keep the freshest pills with my wallet and keys to grab when I go out. The one that is a month older goes into my dopp kit. I am continually getting new ones and replacing the old ones. With my prescription plan it is only $6.42 per month for 30 pills.
We have a medication disposal service at a local hospital where we drop the medicine bottles into a secure slot, like returning a library book. I take the oldest pills there to get rid of them.
Verapamil is a calcium channel blocker that will reduce the heart rate and blood pressure. If the dose is too high and the heart rate and BP are too low, it can cause tiredness and dizziness, so an adjustment may be necessary. However, it took me and my body several weeks to adjust to this medication at the lowest dose. I was assured by my GP and my heart rate that my dose was okay. It may just take some time to adjust.
My wife took her last Verapamil 48 hours ago and stopped using them. There was an immediate improvement once the effects of the last tablet faded.
She continued with the Digoxin to see what side effects this had for her. So far it appears to be OK.
The first thing our GP said during our phone discussion yesterday evening was that he would not start two new tablets at the same time as it makes trouble shooting difficult.
After the first hospital visit my wife was prescribed Diltiazem which she could not tolerate and stopped them whilst our GP was sorting out an alternative. She was then readmitted and prescribed the Verapamil which our GP says is the same drug as Diltiazem!!!!
In the intervening period he had consulted with a Cardiologist who had recommended Digoxin - so far so good? We agreed that my wife would continue with the Digoxin for a while to see if she was OK with them. Obviously she needs to recover from the Pneumonia to eliminate any symptoms still being caused by this but we have seen a great improvement in the last 36 hours.
As dexter8479 states above - be wary of drugs prescribed by a hospital medic. During her hospital stay she was told to stop taking the Calcichew D Forte as her Calcium levels were too high. Our GP checked the hospital blood tests and advised there was just one spike on one of the days and otherwise Calcium levels OK so continue with it.
In addition he reduced her Thyroxin levels from 75mg/100mg on alternative days to 75mg each day. Our GP stated that her levels where on the upper level of the safe band and that the reduced dose would take it down but still be within the safe band. This is because an over active thyroid can trigger AF. He agreed with the decision but this will need to be checked in 2 months with another blood test. It seems the medic was right with this but it was worth checking.
So far all seems to be going in the right direction and thanks once again for all your responses.
I will post again when I have any further updates.
If she were to go back on a calcium channel blocker like diltiazem or verapamil, she would not be able to take any calcium supplements, as it interferes with that medication. Perhaps that is why they told her to stop them initially. If the digoxin does not work out, there are plenty other medications to try. I went through a half dozen of them that unfortunately did not work for me. I went ahead with the ablation because we could not get my AF sorted.
OK that makes sense. The hospital medic said her calcium levels were too high but our GP looked at the hospital blood test results and said they are OK.
It would have been much more helpful if the medic explained his reasoning for stopping the Calcichew was due to starting a calcium channel blocker.
A change of plan...................following some discussion between my wife and I she has stopped taking the Digoxin.
As she is still getting over her bout of pneumonia we decided that it would be difficult to interpret any tiredness or other symptoms as the after effects of pneumonia or side effects from taking Digoxin.
She did not take her Digoxin this morning and managed to spend a couple of hours ironing and catching up on other things so today is her best day yet. Coincidence?
Our thinking is let's get back to where we were before the pneumonia and last episode of AF, stay on the Calcichew and the Thyroxine at the slightly reduced level and monitor the situation over the next six weeks.
At that point have a blood test to see if Thyroxine and Calcium levels are OK and make a decision based on the results.
This may not be a decision that the medical profession would approve of but my wife feels very comfortable with it. When she went into hospital for the first time a couple of weeks ago she told the hospital doctor that she thought she had a chest infection but he dismissed this saying what makes you think that? As my wife always says she knows her own body.
And in this case the chest infection was pneumonia.
She may just be feeling better in general. I was on Digoxin for 6 months and I did not experience any tiredness at all, unlike with the calcium channel blockers and beta blockers. I don't think tiredness is a side effect of digoxin, as it does not decrease blood pressure.
You might want to do some research. I recall reading something about digoxin and 'women of a certain age' & there were some concerns about it. I can't recall what exactly but you could probably research it and find out more info.
Since writing last (5 months ago) a lot has happened but I was waiting for a conclusion before updating this post.
Shortly after my last post my wife was admitted to hospital again fora 3rd AF episode. The medic said the attack was caused by stopping the Digoxin (?) and during this visit her Digoxin was increased to 250mg and Calcichew was stopped again.
After leaving hospital she was still breathless when climbing stairs, still feeling tired, and her arthritis was bad in shoulders, knees and ankles. In addition she was waking up in the morning soaking wet from sweat from neck to waist. We consulted our GP who suggested the night sweats and arthritis was as a result of the hot weather we were having at the time.
This was not a satisfactory response so we got in touch with our Cardiac specialist at UCLH and asked if we could bring our annual appointment (due December) forward and via a telephone consultation he suggested that the Digoxin level was reduced from 250mg to 125mg and that the Thyroxin strength should go back to the usual levels. In the meantime he arranged for a number of tests to be carried out between October and the 1st December. My wife began to feel a bit better as soon as Digoxin was reduced and Thyroxin back at normal levels.
We spoke to him yesterday and he said stay on the 125 Digoxin and current Thyroxin. He also advised trying Furosemide 20mg to take some water out of her body which may reduce pressure on the heart a little. We said we would try it but the restrictions that come with it ie. frequent toilet trips would probably be too restrictive. All round he said it was good news. There has not been any change in my wife's heart condition since December last year and that everything looked good. There was a zero score for calcium in the arteries and blood flow was normal. Heart size was normal, heart function was normal and the Mitral Valve leak was the same as previous years. The heart beat rate was in the normal range too. He advised that he could not see any reason for my wife's breathlessness and tiredness being related to the heart.
As a result of his comments we told him of my wife's experience in March - we had not previously mentioned this to him or our GP as we did not think it significant.
Last March my wife suddenly had a loss/change of taste, had pains in her back, an ear ache, a head ache, bad asthma and her chest felt raw. She then developed a chest infection which she is prone too and eventually got to speak to a locum doctor in order to get some antibiotics for the infection. When she described the problems she was having the doctor suggested Covid but there was no follow up on this and no testing was taking place. In any case the symptoms all disappeared after the course of antibiotics. At this time the change of taste was not in the public domain hence we didn't pursue it.
His response was that it was likely to have been Covid albeit mild and that she was now suffering with the effects of 'Long Covid' He is currently seeing other patients who had Covid that have been left with similar symptoms. Some were gradually improving, some were not.
My wife feels better for knowing the symptoms are not causing further damage to her heart which was a concern.
We are also pleased that both the heart and AF conditions have not deteriorated and will have to wait and see if current issues resolve themselves with time as there are currently no further medical treatments available.
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