The Nurse congratulated me on getting paced..............

Fight back

by Gemita - 2021-01-25 21:08:21

Tony,

Yes I feel a lot of what you describe and although AF sufferers have their own personal brand of AF and other unique health conditions contributing to AF, AF symptoms such as you describe are hardly unique to you, so hit back and as hard as you can and educate your doctors.  How little some of them seem to know about the problem with having to pee excessively for example during AF.  It drives me crazy too. You describe your urgency so well, so amusingly, but of course, it is not.  I also wanted to know why I urinated so many times during A-Fib episodes and no doctor could tell me, at least the ones I asked. Apparently, when in A-Fib, the “atrial natriuretic peptide hormone” in the atria kicks in and acts as a diuretic to lower the blood pressure and regulate the calcium and salt in the body.  It happens with atrial tachyarrhythmias when they hit a certain rate, say above 120 bpm.  Clever really.  But more doctors should know this basic stuff, which is hardly new to the AF community.  We shouldn’t have to resort to Google Scholar to find answers and some respite !

Well I am not overweight (yet) but I have suffered from AF since 2014 when my life changed forever.  From taking no pills, I found myself on a cocktail of pills initially from anticoagulation to anti arrhythmics to beta blockers and on taking each pill I felt worse.  I felt dizzy, faint, breathless, my AF seemed to get worse too not better.  I had brain fog and I couldnt function.  The treatment for the AF was actually far worse than the AF.  Then after 3 years of this torture experimenting with different meds I decided enough was enough.  I told my cardiologist I wasn’t taking anything and wanted another plan.  I am in the UK.  They pleaded with me that I could stop everything except my blood thinner.  I accepted the challenge.  They suggested an ablation around the pulmonary veins, an AV Node ablation or a pacemaker.  I chose the latter.  Now with minimal medication, a higher heart rate setting, my rhythm disturbances are more controlled.  I was not successful with the pacemaker until I stopped many meds though including Flecainide and Digoxin.  I am still on low dose Bisoprolol which helps calm any high heart rates.  My pacemaker works much better now without interference from medication.

When I am in AF there is no way that I can exercise comfortably, particularly with high heart rates.  I think folks here without arrhythmias have the potential to do more than those of us with arrhythmias, so don’t be so hard on yourself please.  You need to try to get fit again, lose some weight, maybe change some of your meds if you can (for example maybe switch from Xarelto to Apixaban - latter gentler on stomach and excellent safety profile) or try something new and drop some of your other meds.  With the right treatment you may be able to get back to some of your activities.  Don't let AF define you.  It is a real pest if you allow it to take over.  It can be controlled.  I am proof of that and I was really in trouble.  I may need further treatment but for the moment  I am still in control and it feels good.  

So I challenge you, how are you going to tackle this, give up or fight back?

Yes, it can get better

by Julros - 2021-01-28 17:23:36

I am so sorry that you are feeling so poorly. With all that weight gain I hope your ejection fraction and kidney status have been evaluated, because you could have fluid overload. I am assuming from you having an ICD and your meds that you have heart failure? Do you have a biventricular pacer? 

I have occasional episodes of a fib and I can tell from the feeling of nausea that comes over me, and lack of endurance. I agree with the others, be sure your settings are optimized. I take apixaban and have not had any side effects of it, other than the price.