Fed up

[4583]

Have Permanent A-Fib...on metropolol for a year with many adjustments...most recent symptoms are a burning like pain in lung area of upper back and feeling of not able to get enough air in lungs...felt all along it was fault of this med....now on a channel blocker because cardiologist now feeling I have zero tolerance for beta blockers...on it now 6 days...up until yesterday felt better...my usual systems back today!!!...so disappointed....maybe too soon to judge...he said give it two weeks...anyone ever had these symptoms?...help!!!

[Goosebumps]

Hey. I get the same symptoms but not so much an issue drawing breath as you. It comes and goes, usually worse if I have been standing for a while.

But here comes the rub, I'm not on beta blockers or channel blockers. Only on an anticoagulant. Sometimes I think the meds mask the core symptoms of AF. If you have swapped meds and are still getting the same symptoms it does suggest that.

Seems to me that AF symptoms morph and move around. I certainly get different symptoms to when I was diagnosed 7 months ago.

Did you mean persistent AF rather than permanent AF by the way?

[4583 in reply to Goosebumps]

Thanks for taking the time to comment...and yes...meant to say persistent! On new med only one week tomorrow...have to give it another week before I call...it is very discouraging so far...was sure the symptoms were caused by being too beta blocked...hr now is anywhere from 54 up to 90...very irregular...told Cardioversion a waste of time...due to fact in persistent for too long and would only revert back to AFib...feeling terrible and no idea what’s next! Why are you not on a beta blocker?

[CDreamer in reply to 4583]

Many people don’t take beta Blockers because they do have side effects and you only need to do type Bisoprolol in the search box, read some of the previous posts to see why.

I don’t take any drugs (other than anticoagulant which you didn’t mention but hope you are on) and started to feel better when I stopped but that did unmask the symptoms of AF, which included some breathlessness but not nearly as much as when taking Bisoprolol which I call the drug from hell!

Beta blockers are adrenaline channel blockers and help stabilise BP and slow heart rate. After Anticoagulation drugs (hope you are on these?) they are prescribed to control heart rate. In fast AF this is important (although other drug options are available) but if your heart rate is not high this can sometimes keep it too low - causing breathlessness so it’s always a balance for people.

My husband had a pacemaker implanted for bradycardia (slow HR) so the cardiologist could prescribe Bisoprolol to control his BP & HR in AF. I, on the other hand, had extremely low BP and very high HR - Bisoprolol helped stabilise my BP but had no affect on the AF or HR and exacerbated an underlying condition which caused me to feel dreadful.

One man’s medicine is another’s poison is the old saying.

It takes time and experimentation to find what helps you. 13 years on I have almost no AF after drugs, 2 ablations & pacemaker.

Best wishes CD.

[Goosebumps in reply to 4583]

Reason why not on beta blockers? Well it's all down to the individual. I've seen two cardiologists and an EP and none of them have said take beta blockers. In fact one of them said only take if it helps control symptoms. But I want to be able to relate true symptoms to the experts and not have them camouflaged by meds if possible.

Like you my HR jumps about and recently it's been waking me in the night going quite fast. That's a new symptom. It has made me consider beta blockers but it has settled back down since.

I've had one reverted cardioversion, we are in a similar place in that I know another one won't hold for ever. Like you I feel miserable sometimes, but I've vowed not to give in and to stay positive.

Good luck

[4583 in reply to Goosebumps]

Thank you soo much for your information..a year in....truly feel I felt better before diagnosis and treatment...but realize I could not sustain walking around with a heart rate of 160!...I am on xaralto 20...cardizem 120...lasix 40....never had trouble ever with fluid until put on meds!! I never feel my heart racing so diagnosis was because went to doctor with vertigo and "feeling like I was going to faint "and noticed sob climbing stairs etc...We are very active...34 gardens keep us busy...in retirement...always on the go...this certainly was not on my radar screen! Where I go from here...have no idea...I am discouraged because truly thought it was the meds...still not convinced...but onward and upwards I guess! Truly appreciate your thoughts!!+

[Stucoo]

I’m now back on Bisoprolol after being drug free for over 2 years and it’s pretty unpleasant. Personally I just constantly feel cold especially my hand and feet.

[4583 in reply to Stucoo]

Yes, Stucoo...I have the cold hands and feet and a feeling of a cold current around me at times since on Bisoprolol...must be honest...even cut to a minamal dose...it was a rough drug...

[KipperJohn]

I’ve been on metoprolol since 2010 - I’ve also had 2 ablations and, in all, about 3 cardioversions. As far as I’m aware it is a rate control drug and also helps with blood pressure. With me it rarely worked if I went into AF - but that’s not what it’s for as far as I can tell. Luckily, after some very bumpy rides after my ablations - last one 2016 - I’ve been well over 90% AF free. I do have some painful bronchial probs but an improved diet and gradual increase in exercise - just gentle walking and gardening - have helped no end. Resting heart rate 60 -64. I was very lucky to have a brilliant EP on the NHS - without his careful handiwork I would have had much more difficulty in dealing with my prostate cancer diagnosed in 2017 but which now is undetectable.

I’ve never been offered Bisoprolol or Flecanide, which I read a lot about on here and have no intentions of changing anything, including Apixaban, unless I’m ever advised otherwise.

It just demonstrates how different we all are and how our bodies react - finally getting referred to an EP after badgering away at my GP for ages was easily the best thing that happened on my AF journey.

Stay safe.

[4583]

Kipper John...it has only been 1 year diagnosed for me...and my cardiologist is very good to reach...Started out on metropolol which was cut down to 1/4 of dose over the next few months because I felt I was too beta blocked...ie...very well covered my afib which is persistent because in it too long before diagnosis...but I kept having this pain burning sensation in upper back...and feeling couldn't get enough air down into lungs...if that makes sense?/ then came the bisoprolol....worse feelings!!!..he finally agreed to take me off this beta blocker and try the channel blocker...now on it a week without previous symptoms...yesterday they are back...Feel now...it is the afib...and the way I have to get used to feeling>>>hence...discouraged!!

[cuore in reply to 4583]

I find your case challenging to read. You seem to not know how long you were in persistent AF before diagnosis but have been in persistent AF for one year after diagnosis and under a cardiologist. I fail to understand why that cardiologist, since you were persistent, would not send you to an EP right away, as soon a you were diagnosed especially since EPs are more medically trained to prescribe AF medications than a cardiologist.

[KipperJohn]

Can’t give any medical advice but I often wonder how one can distinguish what is a ‘side effect’ as opposed to a separate illness or condition, especially given the plethora of drugs we tend to take. Might be worth checking out if you have a lung or bronchial problem. None of my own lung issues, including pneumonia, pleurisy and chest infections have ever been linked to my medication by a physician. Just a thought.

[4583]

had lung function tests...ok...chest xray clear...never had any of these problems ...ever...until this diagnosis of Afib...at one point the medication was cut to a quarter and felt great...but afib was not controlled...upped dose...these symptoms returned...???