Why am I feeling so ill with AF

[Millview]

Diagnosed with AF 6 weeks ago , numerous drugs tried now on Flecanide 150mgs BD Bisoprolol 1.25 msg daily, Edoxaban daily, ramipril 2.5mgs BD .

I have more bad days than good days ,is this normal ?

Thank you

[BobD Volunteer]

Yes of course. You are very early in your AF journey which can be long and arduous . You may need to keep pressing your doctor to try different drugs if what you are on does not suit you as we are all different. Sometimes the drugs make one feel worse that the condition and it is all a balance.

Have you seen a specialist such as an electrophysiologist ( an electrician) or just a cardiologist (a plumber) ? Both have theirspecialities but guess what you need?

Also go to AF Association website and read all you can as knowledge is power.

[waveylines in reply to BobD]

Love your description Bob of the electrician and plumber -brill!! 😃

[Paulbounce]

Hi Mill.

Just my take - but yes perfectly normal.

Don't expect a change overnight as it takes a few months for your body to adjust. I too have good days and bad days - in fact I can have a good hour and a bad one.

So why is this ?

You have a double whammy right now. New med's and afib. Your body will adjust to afib overtime - certainly if you are in persistant or permant. Your med's might be different - again your body may adjust or it may not. If not it's important to discuss this with your medic and other med's might solve the problem regarding feeling poorly.

I must be about 6 / 7 weeks now from going back in to afib. After two years of sinus I really feel it this time. However it improves slightly every few days.

It will do for you too. Be patient and you'll conquer it.

Paul

Personal note to self - be patient and you'll conquer it. Take your own advice to others onboard Paul !

[Hidden]

Yes, many of us experienced what you are currently going through when we were first diagnosed and unfortunately it does take time to adjust to all the anxiety, medication and angst before coming to terms with the condition. The good news is that most of us, over time, adapted and generally came to terms with having AF but as Bob has said, you do need to find out as much as you can about the condition in order that you can understand the treatment options which are available once your situation has been properly evaluated. Nearly a month ago, you indicated that your GP had prescribed Diltiazem as an alternative to Bisoprolol but it sounds as though you have decided not to follow that advice - I wonder why? Sadly, there are no magic wands and getting the medication right is largely down to trial and error but I know it’s not easy. I hope you find some solutions soon.....

[Millview]

Thank you for your comments Have been to a&e x3 times, admitted overnight and put on flecadine +Bisopropol

,diltizepam taken once but did not bring heart rate down,

Bisoprolol reduced to 1.25mgs from 2.5 mgs felt like a zombie, very low in mood and could not function properly

Have a appointment with a EP end of June

Palpitations are definitely not as severe which was my main problem

Looks like I will just have to be patient !

[KMRobbo]

Not medically trained but it could be the bisoprolol. 1.25mg put me to sleep in 40 minutes and when I woke up I felt terrible, pain in upper chest and arms max HR only 117 ( from memory , I could only run 100yards before exhaustion, the week before i could do 6 x 8 minute miles!) , low resting heart rate in 40s when I was normally 68- 72 . I stopped taking it after 8 days. I was totally asymptomatic in afib except for the high rate, so the cure was much worse than the disease!I then tried Atenolol another beta blocker which was better but still terrible and then verapamil a calcium channel blocker which had no side effects for me. So I was on that solely for 20 months. Unfortunately my afib progressed and I had more and more fast rate afib attacks (169 -195 bpm resting , and it was increasingly difficult to get me out of Afib. Second last attack I was in AFib for 8 days at high rate and eventually only cardioverted by a flecainide infusion (into arm) in the local hospital CCU. I was then put on flecainide as rhythm control (2 x 50mg) and 200 mg of diltiazem daily. I was on this for 10 months until an ablation made the meds unnecessary. I was fine with the flecainide but had side effects from the diltiazem and could not wait to get off it although it was LESS worse than either of the Beta blockers. I also think 200mg was too high a dose. I did try 120mg for a while which was better but my local l hospital cardiologist put me back to 200mg after an issue I had However it would appear we are all different in our reaction to meds. Some people happy on bisoprol or diltiazem with no issues. However I am surprised diltiazem did not do anything as it did keep my heart rate in check. When you said you took it once, you actually mean only one capsule?? Doesn't seem much of a trial if so.

As BobD has said there are several different rate control drugs esp beta blockers, so it is possible to try others to try to find a better fit for yourself, so don't suffer the drugs while you have alternatives. At the very least you should aim for the drugs combination with the least intrusive side effects.

[Geraldmilton]

I was on bisoprolol 5mg I was so ill other meds also couldn’t tell which one was giving me all the probs also on amiodarone and riveroxaban dizzy spells pains all over felt like a zombie asked doc to reduce bisoprolol as I read on here it is problematic he halved the dose felt better not normal but a big difference amiodarone doc couldn’t alter have to see cardiologist to get that reduced but it is the meds causing the probs hp you get sorted

[Ppiman]

Have you had further tests, such as an echocardiogram or even a stress MRI of the heart? Those will show how the muscle of your heart, its valves and its blood supply are being affected by the presence of atrial fibrillation. The fast rate many get during an episode of afib (i.e. "tachycardia") can temporarily weaken the heart and reduce its output or "ejection fraction". A cardiologist is the person who can best assess this, and, if he or she isn't a specialist in carrying out ablations (i.e. trained in electro-physiology), then you might, once the results show you are suitable, be referred on for an ablation.

Another aspect of heart arrhythmias that can be very debilitating is anxiety. Sometimes this can multiply the effects of the arrhythmia itself and be difficult to identify and treat.

Steve

[Maggimunro]

So sorry to hear you feel so unwell. This brings back memories at the start of my Afib journey. I found all of the many drugs they tried me on made me feel worse than the condition itself. I had to push to find an EP who would consider doing an ablation and ended by having 3 in 11 months. That was 4 years ago and not a single blip since.

Please find out what your options are and don’t accept that ‘this is it, so just get on with it’.

[secondtry]

As you will note on here the majority of us are on different drugs/dose levels. In my case it took 3 months (and after starting a Magnesium compound and CoQ10 ) before I began to feel only a bit normal. So give it chance but after around 3 months, still unwell, challenge the prescription.

[Dee5165 in reply to secondtry]

After Cardioversion, went back into Afib. Then after 8 weeks of taking Magnesium compound, CoQ10 and Hawthorn Berry brought me back to SNR without increasing dosage of meds. A lifesaver!

[secondtry in reply to Dee5165]

Excellent, may I ask who prescribed the Hawthorn Berry and how much as I think it is key but I have never taken it as unsure over the dose level.

[Dee5165 in reply to secondtry]

Due to many bad side effects to meds prescribed by Cardiologist, I did my own research as I have a background in Health science. I take less of recommended mgs for Afib. With Hawthorn Berry each capsule is 565 mgs. I take 1 every 8 hours. See below:

Color

[Dee5165 in reply to secondtry]

See below:

Color

[Millview in reply to Dee5165]

Thank you will definitely keep that in mind if all else fails !!

[secondtry in reply to Dee5165]

Thanks Dee, I have had enough of drugs, Fleacinide works well I accept but I also know there will come a day of reckoning. So I may well take Hawthorn.

[Dee5165 in reply to secondtry]

I also take Alaskan Wild Salmon oil with Magnesium, Hawthorn Berry and CoQ10/L-Carnitine but I feel it was the Hawthorn Berry that helped bring me back to SNR.

[beach_bum]

Depends on a whole bunch of factors...other medical conditions, age and fitness, typemof afib... Paroxysmal (occasional, triggers by a known or unknown source...food, alcohol,,excercise..this list is long) or permanent...always in some state of afib.I can only speak for my condition and treatment; Paroxysmal *PAF* triggered by heavy metals in the evening. Treated by..well...the obvious...not pigging out at supper and eating earlier, and meds...1x180mg Dilltiazem and 1x20 mg Xeralto daily. This combination of dietary modification and drugs works flawlessly for me. No side effects whatsoever, and I feel great.

Initially the ER Dr. Put me on Metoprolol and different thinner, and I felt just wasted. Could hardly function... breathless after exertion, lethargic. Just felt generally horrid. I called 811 ( staffed by RNs) and was advised to be patient as it took time for the body to adjust. I waited 2 days with no improvement, and called My GP. I got in to see him the following day, and his comments were.."well, I'm not a cardiologist or EP, but I do have over 80 patients with AFIB, and am good friends with Dr. **** ( a local cardiologist) who shares an official with an EP, so I shall refer you. In the mean time, why did they put you on Metoprolol? Wrong drug for your AFIB.. in my GP experience." He then picked up the phone, called Dr. **** Was suggested he put me on my new meds and the rest is history.

I got lucky, many people end up in a medication merry-go-round for a long time before finding something that works for them.

And as you have read on this forum no two people or conditions are the same,,and treatments can vary by country, so be aware of that as well.

Trust the science, but ask questions always. And like my Doc says "keep asking, as it's our job to find answers."

[cindyrella]

I have had to adjust many of my medications that have left me feeling dizzy and sicker than I when I began taking them. Flecainide can cause its own problems with increased AF episodes. I also have a rash on both arms due to meds. My cardiologist and EP are at odds with what exactly I should be taking. Listen to your body. I have become my own wilderness Doctor and am doing much better. Good luck!

[Letofeyd]

Hi Millview.

I am also fairly new to AF - September 2020.

I am on my third different drug selection, with tweaks in dose in between.

Each time I had a change, it definitely took at least a week or two for my body to adjust and to decide if I was functioning normally.

Some drugs take 2 weeks before they even start to have their full effect.

To have had only 6 weeks with so many drug changes makes me wonder if you have had time on any of them to properly feel the benefit and get over the initial change.

I am a novice at this, but that is what strikes me from your post.

[Millview in reply to Letofeyd]

My drugs were changed because I was still getting severe palpitations on the combination of drugS prescribed Feladipine and Bisoprolol are keeping the palpitations at a minimum and do feel better from that aspect

The feeling of tiredness and being generally unwell are still there I have been on this regime for 2 weeks

I am unable to work and just taking one day at a time at the moment

I understand everyone is different

[Letofeyd]

I understand. I couldn't tolerate Diltiazam at all and couldn't work. Sotolol was the same until they cut the dose in half.I was happy on that, with no episodes for 6 months - until a week ago, when it all came crashing down.

AF is unpredictable, it seems.

[BevCynfelyn]

The only way I could tolerate bisoprolol was to take it at night, otherwise I risked falling asleep in the middle of doing things! Any medications from the ramipril ACE family give me a constant racking cough. So I'm currently on diltiazem which seems to give me less side effects. I have tried each combination for several months before changing.

[heartbreak]

I have an easy answer for you-that shit is poison. I tried all of that and soon threw all of the bottles in the trash. The side effects of those poison chemicals are worse than the heart beat irregularities.