Ongoing saga continues....

[kfay]

So, as some of you know who have been following my saga of rhythm issues for 16 months now (yes, I'm keeping count), I started the new drug Multaq in October with the hopes that it would take care of them. Although there have been some changes in my rhythms, they have not gone away and in fact, I still have them every day throughout the day. There has been a little bit of a quandry about what drugs I should or should not take due to the severe right ventricluar dysfunction I have. I just heard back from one of the EP Dr's at the Mayo and they are giving me the green light to now try Flecainide with two conditions attached. I must start it in the hospital and I need to be monitored very closely to make sure it is not causing me to go into heart failure as it can reduce EF and although my left ventricle does it's job just fine, the right is still a concern.

Once again, I am optimistic that this drug will do the trick. I have read more about it in anticipation of my appt. Monday with my cardio. It seems to have had good results in treating the rhythm issues I'm having. Fingers crossed once again.

I also just want to say that the only reason I continue to post this info on here is because I know there are a few others on here like me who have had on-going rhythm issues and possibly I may hit upon something that will help someone else.

Kim

 

[Lily]

I hope this [new med] will help you, Kim . And thanks for sharing your experiences.

 

[escargome]

While I don't have rhythm issues right now, I agree that just knowing someone else is going through the same thing you may be is always a knowledge gaining situation. Thanks for posting your trials and tribulations.

 

[Lynlw]

Kim, I hope this drug gives you the relief that will make your life better and you don't have any side effects. I does help me to know others that have concerns with right ventricle problems too, since they tend to be less common, so please keep sharing.

 

[Shari Thomas]

Hi Kim,

Do keep us posted as I too, struggle with rhythm problems. After my third cardio-version Wednesday, I fell out of rhythm within 8 hours. So, now I may be down to two options... surgery or "live with it".

 

[Danny]

I hope this is the med for you Kim....good luck!

 

[Freddie]

Have my fingers crossed for you Kim that this will do the trick.

Best Wishes

 

[Ross]

If my heart weren't so screwed up, I'd just give you mine. It fires fine, it's just messed up every other which way.

 

[Bina]

Kim, please keep us all posted with your experiences.....good Luck.

 

[deano89]

really hope this drug works out for you

 

[netmiff]

keep posting, Kim, it may well help someone else in your position. I hope this drug is the one that does it for you!

 

[ShezaGirlie]

Kim ~~ I really hope this does the trick for you. Do you take magnesium? It's been mentioned in these threads as a real help with rhythm issues. Also, I am a firm believer that added stress contributes to rhythm issues.

All the best to you..

 

[hall]

I sure hope this works for you. Let us know.

 

[CThrock]

Kim, hope this new drug helps you out!! You are in my thoughts and prayers. Keep us updated on how it is working out.

 

[EireCara]

Thank you Kim for thinking of those of us with heart rhythm issues. Im sorry that Multaq hasnt been successful for you. As you know I have researched fleicanide a lot, so as much as I dont want to put you off taking it, I feel as a 'friend' I just want to remind you that it should not be taken by anyone with structural damage to their heart, or anyone with long qt syndrome. I know you probably know all of this anyway.

As it happens, I had a weird irr hb last weekend and actually passed out for a few seconds. To cut a long story short, I saw my cardiologist today, and he is going to suggest to my EP cardiologist in Dublin that I should have a pace-maker fitted and then I could take fleicanide, as the pace-maker would kick in if the fleicanide should cause my heart to beat too slowly or cause long pauses.

Best wishes Kim, I will keep you in my prayers.

 

[TXWildflower]

Kim - I'm praying it works for you! Given that this site is exactly for sharing this type of info - keep on posting. One never knows when it could come in handy....

Best of luck!

Rhena

 

[Cris N]

Kim, here's hoping that this will do it.

 

[njean]

I know you struggle from day to day with this on-going issue Kimmie & I wish you the very best with this new drug.

And too, glad to know that you will have to be admitted into the hospital when it is first administered just in case your body cannot tolerate it well.

Best wishes my friend!

 

[jax]

Kim

Please do continue to share. It may help some of us. I have recently been having more and more rhythym issues. It started out with just a palpitation here and there normally at night and the other night at work I had a rapid heartbeat for a few minutes which was thumping pretty good. That was disconcerting to say the least. It stopped after a few minutes but while it was happening I wasn't feeling too good. And I really don't know what brought it on. I have to say it scared me a bit and I felt the need to get something to eat only because I was hoping it would make me feel better. Although I really never thought that had anything to do with it. I would have hoped that the pacemaker I have put in would have prevented something like this from happening but then they were able to turn it down so I wasn't using it too much. So please do continue to post about your issues. Hope this drug works for u. And there are no complications.

 

[bvdr]

I hope all goes well for you. I was on Flecainide 200mg twice a day for about 6 years. I believe this is the maximum dose recommended. The drug really worked for me as far as keeping me out of AF. After years on the drug, I began to experience neuro side effects such as numbness, neuropathy, balance issues, and visual disturbances. I did discontinue the drug and now, several months later, most of the side effects are gone. I still have rhythm issues which will likely always be the case. Since coming off Flecainide I have been on amiodarone a few times which also has been effective.I know there are warnings for using flecainide in hearts with structural damage but I had no problems other than the neuro and the sensation that my heart was beating with more force.
I do believe some of the side effects are dose related and you may escape them altogether. Let us know how you do. Shezagirl is right on mentioning magnesium as well as potassium since they are both essential in maintaining a normal sinus rhythm.