rhythm meds and bp

[banglamom]

I have had worsening rhythm problems over the last several years, dating all the way back to viral myocarditis in 1993 when I had a resting pulse of 180 for nearly 6 months.  I had three ablations in the last couple years that were unable to fix it.  They just kept adding more and more meds until I fell over pulseless.  Now I'm on coreg, flecainide, diltiazem, and lisinopril.  I never have had high blood pressures and all these sometimes about tip me right over.  If I don't take them though, my rate runs away.  The ablations were only marginally successful.  A pacemaker now prevents me from too slow side effects of the meds, but I have learned that hypotension can still be a problem.  Are there other meds that would do the job of rhythm control without crashing my pressures so badly?  Most days, it is down to 90s/50s, but some days it can be considerably lower.

Would being on tikosyn or sotalol mean I could take one instead of 3?  I'm actually a nurse but these questions are hard to find the answers to.

[banglamom]

Did you start all these scary drugs in the hospital?  Have you heard much about a maze procedure to cut the pathways after a 1, 2, 3 ablation to no avail.  Two years ago, I would not have considered getting cut open for anything really.  Now, I am willing to try anything to stop it.

I to am generally normotensive to hypotensive.  I tolerate 90/50 ok, but at 70/30, I feel ready to fall over.  All three times my rhythms and/ or pressures have dropped me, I have been at work.  Otherwise, for me, an ER is a place to go to work.  I do NOT want to be the patient.  As a nurse, I make a pretty bad patient.

I am trying to determine what I will be willing to do/try.  I don't HAVE to go to the cardiologist/ EP md until December.  I COULD always go sooner or again, but I hate going there.  It is never good news.  Through all this, I reached a point of all the valves leaking and my EF decreased from 70! to 40%.  I has been a tailspin of late.  I have reached a point of I don't know how to fight and similiarly really, I don't know how to give up.

Thanks for the interactions.  It definitely feels like a very lonely place.

[babygirlyoyo2002]

I have the same problems as you...sort of, I have an ICD instead of a pacemaker and I have been on every med listed in this post, I am now taking the last resort drug Amiodarone and it has been a godsend. I still have bigeminy, which I will be ablating soon (4th ablation) but I have no BP problems like the other meds but I also have a low BP anyway so it might be that I feel fine with the low BP. I still take alot of meds but I don't feel as fatigued as I did before the Amio. I haven't had any of the bad side effects...yet and I have been on it for a year and a half, even with such a high dose (300mg) the most significant side effect is sometimes losing my balance (have not fallen)
email me if you wanna talk. ***@****

[Momto3]

I started on flecainide in the hospital.  I was there for about 72 hours and then on my way.  I would walk out into the hall to check the monitors and could not believe how normal my ekg looked....very cool!  It was definitely comforting to know I was being "watched."

Thanks goodness you were in a safe place when you collapsed!!   SHEESH!!

[banglamom]

Did you have to start rhythmol in the hospital- like tikosyn, sotolol, and others.  Did you start flecainide in the hospital?  Where I work , they do start it in the hospital.  When I was in Oregon... they didn't.  It was the second day of flecainide that I collapsed at work.  Luckily, I work in the ER as a nurse (and on a cardiac floor).  So my friends scooped me up nearly as I fell and I woke up under the bright lights on my own er gurney.  Therein lies why I am nervous about the changes.  I'm nervous about NOT changing too.. because the life I'm in now is very hard.  About 1x.wk, I either have my pressure drop me or my rhythm run away.

I appreciate your guidance and kind words.

[Momto3]

I'm not too familiar with the Maze procedure, but you might want to try asking on one of the forums where the doctors respond to posters' questions.  Try the Heart Failure or the Interventional forums and see if one of the doctors can make any suggestions for you.

Definitely less side effects on the rhythmol!  (at least for me)

[banglamom]

So.. less side effects with the rhythmol?  I have been on the inderal for so long, that I had to take more and more to keep the rate down.  By the time they implemented the flecaininde, I was on 300 of metoprolol and 200 of propranolol.  The body does and amazing job of compensating and I was able to maintain a pressure.  When the flecainide was added, it seemed to make everything else work better and for the first time since myocarditis, my heart was SLOW.  After the 3 ablations, I still have to carry a backpack full of meds.  I wanted to stop taking ALL these meds, but my doctor told me I was wearing my heart out going 170-180 all the time and I wouldn't live too long.  Do you have any idea if a maze procedure could stop the madness and just be paced, then I wouldn't have to take all the stupid meds.  I am just getting desperate.  I have no exercise tolerance and am vacillating between desperation and depression trying to manage it all.  Thanks for your input.

[Momto3]

The flecainide worked well for me, but I wasn't crazy about the side effects.  It affected my central nervous system so I had weird dreams, tremors, shakiness,etc.  Next I tried rhythmol and that was much better, also good at controlling the extra beats, but fewer side effects.  The only real difference was taking it 3 times a day, versus 2 for the flecainide.  After about 7 months on the anti-arrythmics, I checked in for the first ablation (RVOT); 3 months later, back to the lab (LVOT).  Today, I'm taking an ACE for optimal BP (because of MR) and an aspirin.

The meds that made me most sluggish were beta blockers (inderal) and the ACE (lisinopril), but eventually that went away.  

Yeah, let's steer way clear of that phrenic nerve!!

[banglamom]

Thanks.  I have had three ablations in the last year to try to stop the storm.  They actually did some things, but not the baseline of the problems.  They removed 2 reentry loops from the av node and some volunteer conductor sites from the atrium.  They tried to do a sinus node modification, but the spot ended up being RIGHT on the phrenic nerve, so cutting it would have meant my not being able to breathe well on my own.

I have had 5 cardiologists and 3 ep docs, mostly because of geographical changes over the years.  The pacemaker has been the highlight of the last few years.  I really recommend them.  After getting it for a back up, I have become nearly 100% paced.  My heart was glad to give up that responsibility.  Actually, all the meds keep it there.  I am either paced or my rhythms run away in super tachy svt- into the 200s.  I have had so many changes in meds.  

Did the flecainide work well for you?  I notice the past tense.   The EP md changed me from being on propranolol and metoprolol to coreg this spring.  I was glad to change 2 drugs for 1.  I'm still on the ACE, CCB, beta-blockers and flecainide.  Sometimes I don't actually know if I feel bad because of all them meds or because my heart is not in great shape.  It is very hard to separate them.  

I'm hoping maybe there is a pill or two that I can scale down to from the 20+ a day I take.  I would even consider a maze procedure if they thought it could work.  The longer this goes on, the more tired and deconditioned I get.  Thanks for sharing.  Much appreciated.  Let me know how the flecainide played out for you.  Is your EF ok?

[Momto3]

Hi banglamom,

Sorry to hear you're feeling slowed down by the meds : (

It took me 4-5 months to adjust to a low dose of lisinopril so I can imagine how multiple meds might have a similar, or greater, effect.  How long have you been taking Coreg and lisinopril?  I also took flecainide, but did not feel sluggish as a result.  It was more with the BBs and the ACE.  

Glad to hear the pacemaker is keeping things from slowing down too much.  Any chance another ablation attempt would have greater success?  Have you seen anyone for a 2nd or 3rd opinion?