need some advice...

Hi to all. Been having some problems and need expert advice. So I had my 1st PM put in on 4-09. Surgery went well and so has the healing process. Cardio Dr. set the PM low rate at 70 and upper 130. The first week I felt very dizzy with very queasy stomach but felt more energy. I called and the Dr had me come in on the 16th along with a Medtronic's rep and they checked everything and all was good. I was also having more problems with the PAC's. They reset my PM low setting to 80 and thought that would help me not "feel" the PAC's so much. Also took me off beta blocker Metroprolol (spelling is wrong) which was the lowest dose you can get to see if this would help with the dizziness. Dr also made a comment "you may have to just live with this." Well, thanks....
She is a good doctor and comes highly referred and I do trust her expertise but I had this done to feel better not worse!!!

So 5 days have passed and I am not feeling the best! I wake up with no energy, heart rate has been in the 90's and have had shortness of breathe. So I called Dr. and she said give it a week for everything to adjust. Oh, dizziness is slightly better, My PAC's seem worse because now they feel harder with the faster heart rate. She also has me on a low dose of Flecainide twice a day.

What should I do????? Is 5 days enough time to adjust? I also think I must be sensitive to the rate response because when I ride in the car with bumpy roads I can feel my heart beating faster and all the way up in my throat! Isn't there just on and off feature for that? And with SSS is this not a choice to be off?

Do I call this next Tue and ask to be seen for another adjustment? Do you think raising the dose of Flecainide would help with the PAC's? Soooo do not want to be on that drug but what choice do I have...

Sorry about all the questions - just don't know what to do. I feel like I am bothering the dr with petty stuff but I so wanted to feel better than this.

Thanks again,
juju

6 Comments

Flecainide redux

by donr - 2013-04-21 02:04:44

JuJu: I wrote you about Flecainide in your last thread. At that time I had to guess that you were having PVC's & tonight I find it's really PAC's.

That does NOT matter if you are looking at the side effects of the Flecainide.

All the effects you list can be a product of Flecainide. % days was NOT enough time for me to adjust, but I did not feel as bad as you describe. Before you medicate yourself, I'd talk w/ the cardio & tell her how you feel - exactly. Also - key data - is how the rate of PAC's is compared to not being on Flecainide. Then she can decide if a grreater dose would help you. But you have to be able to tell her explicitly whether or not it helps your PAC's

You ask what choices you have - not very many! Just about every heart med has messy side effects. They are different for each one of us, however, so the cardios have to feel their way w/ each patient. They know the meds, you have to be accurate in describing how they effect you.

I realize that you do not want to be on Flecainide - it's a messy med, but the others can be just as messy or messier.

ANYTHING that goes too fast or comes too soon cannot be helped by a PM. A PM is only an accelerator pedal, not a brake pedal. AFter PM's & meds to control these premature effects have failed, you get into ablations - they are chancier & more difficult than what you are going through now. They are also irreversible. So work w/ the cardio on the PM & Meds bit by giving her detailed info.

Don

time

by Tracey_E - 2013-04-21 06:04:24

It takes time to adjust to a new dosage of meds, at least several weeks.

Ignore the dr when she says you may just have to live with it! This is not petty stuff, it's your well-being. There are a whole lot more things you can try before throwing in the towel.

coupla thoughts...
80 is really high for a min rate. While you may need more than 5 days to test out the new meds, I would think 5 days is more than enough to see how 80 feels.

it's common to take a few tries to get rr adjusted for you. If you have sinus dysfunction then you do need it turned on, but it sounds like it's too sensitive.

These are not petty things, never be concerned about calling the dr. It's their job to get you feeling good again. Never throw in the towel and accept not feeling good until you've exhausted every option.

PVCs

by cans624 - 2013-04-21 09:04:39

I am also experiencing PVCs and they are life altering I am trying not to think about them but its very hard I am going to see the doc on Wednesday to discuss medication options cause I get them alot I have been on beta blockers but they do not work I hoping to get some thing to at least reduce them somewhat they are very scary I hope you get some help to, trust me you are not the only one and for me these pvs that I have I just noticed them coming on about a month ago .

Thank you

by juju - 2013-04-21 09:04:42

for all the advice!

Just a question for TraceyE - I have been on the lowest dose of Felcainide for few months now and it was not helping with the PAC's so she put me on a very low dose of the beta blocker along with the Flecainide The Dr. could not do a higher dosage because of my low heart rate (SSS.) Thought it was helping for a while but seems like since the PM was put in they are worse. She took me OFF the beta thinking it would help with the dizziness which has some what but I should be adjusted to the Flecainide by now right?

I think the higher rate is making the PAC's feel even worse! She did have me set at 70 which I thought was high to begin with.

Hope they can get this right! I know it may take a few tries.

Thanks for your help!
Judy

Oh also,

by juju - 2013-04-21 10:04:52

I was diagnosed with Mitral Valve in the 80's. Then started the fast heart rates in the 90's which I had the cox maze procedure in 2005. I still had palpitations but no fast rates which then I was told I had A-Fib. NOW the Cardio/EP Dr. is saying I do not have A-Fib - I am having PAC's!!!! She did not see A-Fib. So now I guess I have PAC's with SSS and bradycardia which I got the PM for.

Dr. also said Ablation was ABSOLUTELY out of the question and the cox maze made a mess out of my atrium and she had a very hard time finding a place to put that lead where it would work - otherwise I would have to have the open heart procedure that the leads are put on the outside of the heart. Sure hope the leads stay in place!!

I know PAC's won't kill you and normally don't require meds but I am very sensitive to my heart beats and my PAC's and can't tolerate them.

Ok I will stop talking (typing) now!
Thanks again
Judy

pac's

by Tracey_E - 2013-04-22 12:04:52

How do the pac's make you feel? Can't tolerate, like can't function, or they bug you? Because if you aren't in afib and you aren't tolerating the meds well, you might be better off trying to pace out of the pac's rather than dealing with the side effects of the meds. My understanding was meds don't help with pac's or pvc's much, but I could be wrong.

I don't know much about felcainide, but I'm wondering why she's trying both instead of just a bb? Maybe ask to try another bb, or drop the felcainide and try metoprolol by itself?

I couldn't tolerate metoprolol. My dr kept saying give it 6 weeks but I was so dizzy I tripped over nothing in my kitchen and broke my foot. It was like being drunk all the time. I switched to atenolol. It still made me dizzy and tired at first but after a few weeks it got better, I've been on it 3 yrs now. And there are people who can't tolerate atenolol but do fine on metoprolol :o) It's all trial and error, and it's really annoying since every change in meds or dosage takes weeks to figure out if it's going to work.

The meds lowering your hr too much should not be an issue now, you're paced so the pm won't let you get dangerously low.

You know you're wired when...

You play MP3 files on your pacer.

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