Hi everyone hope this morning finds everyone well.
I was wondering if anyone could share their thoughts on the above mentioned medication.
Since I was diagnosed with AF in September I have been put on this medication after I did not respond well to solotlol it made me feel zombie like and depressed. When I first went into hospital with a fast heart rate they intravenously put androneall (think that spelling is incorrect) it was horrible impending doom they gave me three times which did not work. I have been left with huge anixety.
They changed my drugs to diltiazem 3 x 60mg a day and apixaban 5mg. I am also on levothroxine 175mg daily and bendroflumethiazide 2.5mg a day. I also have an under active thyroid. They want to put me on androneil (again can't spell it) I also have asthma.
My symptoms are getting worse my heart seems to be thumping shuddering about and any movement makes me breathless, I have absolutely no quality of life. I have become locked into my house?? I am unable to return to work also.
I am due to go in and get ablation in January.
Would it be possible for me to ask about my current medication could it be my medication or is this the natural flow of AF. I would greatly appreciate any feedback please.
Kindest regards
Laura
Written by
Lorlaw70
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Although I take Apixaban and Diltiazem, I cannot really help because I have been on that combination since having a CV and subsequent ablations and any AF episodes were quickly stopped using a PiP. For the time I was in AF, I never experienced and serious issues but of course, we are all different.....
Laura, AF is generally a progressive condition so this may well be natural development. Since we are all different and teh condition is a bit of a mongrel we all seem to experience is in differetn ways. It is often necessary to try several different medications befofre a combination which suits you is found. I could never take diltiezem as I felt so bad on I only took one pill. The apixaban by gthe way is an anticoagulant to help protect you from a stroke and the drug you were thinking of is Amiodarone which whilst very effective does have some unpleasant effects.
It could be adenosine which is known as the “impending doom” drug. They used this on me for a chemical cardioversion and said if it was SVT it would fix it but if it was atrial flutter it wouldn’t. It makes you feel awful for a few minutes. Mine was atrial flutter so my heart rate dropped from 150 to 70 momentarily and then went straight back to 150 so they did an electric cardioversion the following day.
Hi BobD many thanks for replying. I have a low tolerance with drugs and I have concerns about changing to Amiodrarone (Thanks for the correct spelling!) Which I have been told by my doctor has terrible side effects, this makes me a bit nervous as I really don't want to be bogged down with anything else. Laura
Amiodarone is used also with people who have Graves disease( overactive thyroid). I do not understand why they would give you that rather than first trying a reduction of your thyroxine treatment.
Diltiazem is used instead of Bisoprolol or other betablockers for people with asthma. 180 mg is quite a low dose and I think an extended release capsule taken once a day might be more effective, or you could perhaps have a higher dose but you would possibly have more side effects - lethargy, swollen ankles and constipation. I think maybe that is your only option apart from Amiodarone - which can affect the thyroid 😖 Please note only speaking from experience.
Hi Buffafly thanks for replying. I was on a one day capsule of 200mg and felt terrible I asked if I could go back onto taking 3 x 60mg a day to see if that would help me. Alas it did not I only feel worse. I have got an extremely stressful home life at the moment which I think is not helping at the moment. I am trying all sorts of relaxing techniques including knitting! Never done that in my life before. Laura
I take 120mg at night, used to take 240 before my ablation which zombified me but my HR has been higher since so 120 is manageable. I am sure your stressful life does not help at all but obviously there is not much you can do about it. I prefer crochet myself, very soothing 😑 Best wishes for a successful ablation, mine was not totally successful but it changed my life even so. Try to get some help organised for afterwards so you can rest and get the full benefit 💜
Commiserations …. no wonder you feel dreadful and I feel sure we all sympathise with you. As BobD has said, what you are experiencing could be the medication or the progression of AF itself. It's really hard to tell, I'm afraid.
However, I take both apixaban (anti coagulant) and diltiazem (calcium channel blocker). My (non-medical) view is that it's more likely to be the diltiazem that could be causing you problems though I am OK on that/don't experience the symptoms you describe. When I was first switched to diltiazem (from bisoprolol which I didn't get on with at all) I took a similar dose to you 3 times a day. I was told that this was a 'loading dose' and then I was to take one 240mg tablet a day starting a couple of weeks later. I take this at night on the instruction/advice of the pharmacist. Were you not told about a 'loading dose'?
I don't take the other medications you mention so can't say anything helpful about those, but it occurs to me that a pharmacist is probably the person who is best qualified to offer a view on the 'cocktail' of drugs you are taking. Why not give yours a ring to ask? Only a doctor can change your medication but pharmacists are well-informed about their side effects and interactions.
Here's hoping you are able to find a medication to suit you very soon.
Hi CaroleF many thanks for replying to my post. I did not know that was a loading dose and I did not know that I could take it at night. I was given a 200mg tablet once a day but I took it in the morning and felt terrible I asked the doctor if I could return to taking 3 x 60mg as I felt that I felt better on that but now I am not just getting worse. I have got an extremely stressful homeless my daughter is ill and my husband has a chronic condition which I am sure is not helping. I will speak to the pharmicist tomorrow about interactions. Many thanks. Laura
I'm so sorry that your husband and daughter also have health problems, Laura. No doubt worrying about them is adding to your own problems and there is no easy way out of that other than - maybe? - support to help you manage your anxiety and feelings. Perhaps CBT or mindfulness could help you, though a hobby like knitting does take your mind off things. I know many crafters (of whom I am one) say that the activity they enjoy helps them to cope with stress in their lives.
The higher dose tablet you were given is almost certainly a slow-release one and you might well do better on that higher, but single, dose (as Buffafly has suggested). I'm writing this late in the evening, but if you see it before you speak to the pharmacist tomorrow do get her/him to explain how diltiazem works and ask about taking it at night not just about interactions.
Let us know how you get on, won't you? Carole F x.
Edited to say ….. Buffafly has mentioned potential side effects of Diltiazem. I was warned about the possibility of swollen ankles and feet and of constipation by the prescribing cardiologist BUT (happily) I haven't suffered from either of these. So …. no need to assume that you will be adversely affected on the higher, once a day, dose.
I've been on 180mg Diltiazem 1x a day of 15 years now. I take this along with 150mg Flecainide 2x a day. I had a bad couple of days when I started a lower dose of the Flecainide where my wife could hear my heart pounding laying next to her in bed. Then they raised the dose and it seemed to calm down. I have occasional bouts with afib now but it is much less often than it used to be. Now when I get it for an hour or so I double up the Diltiazem and take metoprolol and it seems to convert back after another hour or two. With afib comes a lot of anxiety I know. Do what your doctors say, I would suggest (ask your doctor first) taking magnesium and potassium supplements as they seem to help prevent some afib a bit. Relax in knowing that lots of us are out here and know exactly how you are feeling. It does get better.
Hi Laura
I am on apixaban, 1.25 bisoprolol and 50 mg flecainde. I don't get any major side effects and since being on this have little AF . I would ask for a review of your drug regime if I were you there are other drugs which may suit you better.
I am surprised they have not reduced your thyroid medication. That was the first thing that happened to me after my first attack of afib. They said my THS was too low and that too much thyroid hormone could cause afib.
I was on diltiazem 200mg mod release with flecainide 2 × 50.
The side effects of dituazem were tiredness, exercise intolerance, breathlessness and brain fog. I believe I was overprescribed at 200mg. For a while I was on 120mg again mod release and while not great was better. I was taken off the low dose and put back on the 200mg for reasons I won't go into here. One thing I noticed was that the brain fog and tiredness got cumulatively worse the longer I was on it. When I stopped taking it it took 4 to 6 weeks before I felt better and lost the fog and got much mentally sharper . I was surprised when I realised. I was o. Diltiazem from mid July 2017 to mid may 2018. I should also point out I was o. Calcium channel blockers because I could not tolerate beta blockers, bisoprolol and Atenolol. Diltiazem was better for me than them. Last point; I was on verapamil 120mg for 20 months before diltiazem. Another calcium channel blocker. That was relatively great to diltiazem only very minor side effects. Maybe that could be something for you to try, if your doctors could agree .
Many thanks for your suggestions - I have been told there is no other drugs they could try on my just now other than anderomme which has nasty side effects. I am at a loss with it all now but I am due to go in for ablation in January so fingers crossed that might sort me out. Laura
Hi KMRobbo can i ask a question please. When you where on verapamil where you also on apixaban. I was to start verapamil but they told me to take diltiazem instead. I am considering calling my doctor today to ask if I can go on that drug instead.
I was on diltiazem at first but it gave me constant headaches, so the cardiologist put me on verapamil 40 mg twice a day and apixaban and for the last two years I’ve been fine on that so perhaps you should try verapramil
Hi Kingsley09 thanks for responding to my post. I have just spoken with my doctors secretary to see if I can get changed. How long did it take for you to feel better on verapamil? When I get up in the morning I feel absolutely fine but about 30 minutes after taken my diltiazem and apixaban my heart starts it's nonsense and I can't breathe properly when I move, this will start to improve about a couple of hours after taking my medication.
You are welcome to ask me any questions ; that's why in am on the forum.
When I was diagnosed as PAF first I was put on rate control bisoprolol 1.5 mg by the hospital just before they discharged me. This was a disaster with several side effects. After a week I asked my GP for something else so she tried Atenolol which was much better but still bad. After 2 weeks I saw the go again and she said obviously I do not get on with beta blockers so let's try calcium channel blockers and that was verapamil and I was fine with that.
I had 10 afib events over the next 20 months and I dealt with them by extra verapamil and running ( the raised hr overcame the afib after about 10 mins effort.) Very happy.
Unfortunately my afib developed and the verapamil/ exercise combination stopped working and I spent 8 days mostly between 130 and 195 bpm.
I was eventually cardioverted by flecainide infusion onto my arm.
Then I had to go onto 2x 50mg flecainide rhythm control as well as the rate control and when they did that they switched the rate control to diltiazem, at the last minute as I was discharged. I do not know why. And then the diltiazem problems started, which I first blamed on the flecainide, but the doctor at the hospital on my first monthly review advised it was most probably the Diltiazem.
I was not on apixaban nor any A/C as my chads2vasc was still zero.
Hi KMRobbo thank you for your advice I called my doctors secretary this morning and they are going to get back to me. It's the same old routine I feel fine when I get up and as soon as I take my diltiazem and apixaban about 30 minutes later I feel breathless and my heart starts doing aerobics in my chest grrr. I used to be really active but since shattering my arm in February and have scaffolding round my arm it has dimished a lot I am having to depend on my friends to look after my horses just now which is a bit of a bummer, I used to walk a lot to.
I did not have aerobics in my chest. My issue exercise-wise was that my max HR when I was running absolutely flat out was 137bpm, which is about 6mph, but to maintain even that snail pace was exremely painful , like the last 100m of a 400m race! Just walking upstairs made me out of breath, and I was used to climbing up 3000 foot mountainside a walk at weekend. Just no chance of normality. So I did little exercise and got fatter.
KMRobbo me to I am fat at the moment lol I can't wait to get back to my old self I used to be the life and soul of the party?! My uncle told me the other day that i was never off the top of the road and had ants in my pants and to take this time to rest! But I don't do sitting on my bum very well and I like to be busy. Laura
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Bisoprolol to Diltiazem
Apixaban 
Apixaban
First Post - Flecainide with Diltiazem
