My Afib and urination odyssey

Posted , 7 users are following.

I've been part of this forum since near the beginning and a lot has happened since then. I thought it would be useful to tell my story. Maybe it could help somebody or at least offer hope.

I started experiencing frequent urination at night, and sometimes during the day, near 2000. Typically, at first, I would wake up after midnight and visit the bathroom 6-8 times, every 20-30 minutes. This started at about once a month or so. I had what would later be diagnosed as a-fib, but I didn't connect the two at first. After much complaining to my primary doctor, he sent me to Urology, where it was assumed I was just another aging male with an enlarged prostate. When I assured him that, while that was true, it wasn't the real problem, he gave me a plastic urinal and told me to record overnight volume for a week. I gave him daily numbers like: 2,700, 350, 1,900, 2,300, 500, 300, 3,000 ml. He considered the results and told me that he had heard about a-fib releasing a factor that caused the kidneys to dump liquid. He didn't know what to do about it and Endocrinology refused a referral.

About that time, my a-fib was documented. As my a-fib got worse, so did the urination. At the peak, I was going to the bathroom 15-18 times a night, every other night, and once measured 4.5 liters over night (I usually didn't measure, however). This, of course, led to severe dehydration. Over six months I had emergency room visits for bleeding kidneys (2), strokes (2), and an injury from fainting. My cardiologist agreed that something had to be done about the a-fib. RF ablation was the only outright cure, but in 2007, it was risky and the success rate was low. We agreed to try chemical control, hoping to buy time until the technology progressed. I was put on propafenone (Rhythmol), which worked phenomenally well for ten years: almost no arrhythmias or hyper-urination. Then, as expected, I started experiencing wildly fluctuating heart rhythm and I was taken off of it and put on amiodarone.

I was sent for an ablation consult and learned that it had, in fact, improved, and two ablation procedures were now routine at Kaiser Permanente, where I get medical care. They first performed a cryoablation, which is relatively quick and 80% effective. It didn't work for me, though. Six months later, they tried RF ablation, much more tedious (for them) and with about the same success rate. This one stuck. It took almost 6 months for things to settle down, but now I pee about as much as a 67 year old man does. Strangely, I still have arrhythmias, primarily ventricular, which must have snook up while the a-fib was firing, but my cardiologist doesn't seem worried about them. I've been told that the success rate of the procedure after 10 years is only about 20%, but drugs become effective again. Who knows. Maybe there will be a whole new treatment by then.

Good luck to all you hyper-urination a-fib victims out there. Maybe my blessings won't last, but it's great for now.

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10 Replies

  • Posted

    Quite a story, friend, and congratulations for being tough enough to go through it.

    Just curious, any other drugs involved? Any high blood pressure?

    Peace.

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    • Posted

      The only drugs were amiodarone and propafenone. Aminodarobe was only for temporary control, because it is so toxic. Before they put me on long term propafenone, they wanted proof that the afib was causing the urination problem, because in those days, that connection was fully established. As expected, amiodarone suppressed both the afib and the pee, but it also caused an atrial flutter, which had to be ablated before I could go on propafenone. I've got all sorts of scars burned into my heart

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    • Posted

      I forgot the blood pressure question. I have mild HBP easily controlled by conventional meds. I have only taken propafenone and amiodarone for afib. Each was effective, propafenone more so.

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    • Posted

      I took amoidarone for about 18 months, which was way longer than I was comfortable with, given its toxicity. After the first month or so, though, I didn't have any appreciable side effects.

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  • Posted

    Thank you for sharing your journey!

    Very interesting!

    I do have a question. I am in permanent afib which is pretty well controlled by meds. I am more bothered by the fatigue and lack of energy than my 2am nightly trip to the bathroom.

    I have been advised that since meds are working an ablation is not an option. I have also been told the longer you are in afib the chances of a successful outcome from an ablation go down.

    I have been in permanent afib since at least 2012.

    Were you in permanent afib and if so for how long before your ablation?

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    • Posted

      Great question, because I was also in permanent afib before propafenone suppressed it. When the drug started causing toxicity and they took me off of it, my afib returned (immediately), as did the urination problem, I was told that, as long as the drugs worked (I was moved to amiodarone), the success rate for ablation is about the same as for people without persistent, permanent afib . I thought that sounded too good to be true, but so far, so good. My medical provider has a lot of experience with ablation, so I guess I should trust them. They also said that, even if ablation isn't fully successful, the drugs work a lot better afterwards. Good luck!

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  • Posted

    Jeff,

    Thanks for sharing your most interesting story; it sounds like your strength and persistence has paid off! Kudos to you!

    I have a somewhat similar story, but instead of hyper-urination, I recently was diagnosed with urine retention after a CT scan after a fall off my bike found a "massively distended bladder". The ER staff could not believe I was not in excruciating pain as they drained 5300 ml of bloody urine from my bladder. I was told a bladder normally holds about 1500 ml. I walked out of the ER more than 10 lbs. lighter! They think the blood thinner I am taking for aFib and the fall off the bike caused the bleeding.

    After wearing a Foley catheter for six weeks and failing a urodynamics test with my urologist, I have started a program of clean intermittent catheterization (CIC) in hopes of rehabbing and retraining my bladder so I can urinate without a catheter. Researching the internet for causes of urine retention found many causes, but one that caught my eye was the use of antiarrhythmic drugs:

    Pharmacologic Agents Associated with Urinary Retention

    CLASS DRUGS

    Antiarrhythmics

    Disopyramide (Norpace); procainamide (Pronestyl); quinidine

    I have been taking Dofetillide (generic Tikosyn) since being diagnosed with paroxysmal aFib in January 2018. Before my bike accident I was urinating regularly with no problem. After the 5300 ml of urine was drained and the Foley catheter removed, I have not been able to urinate without a catheter. The RN that conducted the urodynamic testing said that I have nerve damage from my bladder being stretched from the severe retention and I was able to urinate due to the pressure of so much urine in my bladder.

    So I would be interested in anyone who may have had a similar experience and/or have urine retention problems while taking meds for aFib. I have added this to my list of questions to ask my urologist at my next appointment on December 2.

    Better health to all,

    Patrick

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