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Rough Week & Weekend

Posted by alangford 
Rough Week & Weekend
July 06, 2015 07:15PM
I had my third cardioversion 7/1. I left with Multaq RX. 24 hours later I was back in what felt like flutter or atrial tachycardia, rate 150. I ended up going to the ER and was admitted. I spent two nights there and eventually converted on my own with the help of Amiodarone. Ugh. I'm on a loading dose now and supposed to drop down to 400mg next week. I've had two good days so appears to be working. I was thinking I only have to be on it for 2 months and then my Natale ablation. However, I contacted them today to let them know the change in medicine (glad I did) and Barbara said, "Dr. Natale will not want amio on board". Ugh. Someone will be calling. I don't know what to do.
Re: Rough Week & Weekend
July 06, 2015 08:22PM
Do I try to get in sooner with another doctor in their practice? Do I wait two months and just go in locally for weekly cardioversions?



Edited 1 time(s). Last edit at 07/06/2015 08:22PM by alangford.
Re: Rough Week & Weekend
July 06, 2015 09:05PM
My vote would be to a) stay with Natale, b) asked to be put on the cancellation list & c) ask what Natale's treatment suggestion is for you in the mean time.

George
Re: Rough Week & Weekend
July 07, 2015 12:57AM
Hi, Alangford,

Amio stays in your system a good while, and I believe that this may be one of the reasons Dr. Natale doesn't want it around approaching an ablation. George's plan is the one I would go with.

Best wishes,

Rob
Re: Rough Week & Weekend
July 07, 2015 06:52AM
Ask Natale at what point he wants you to stop the Amiodrarone. Maybe he will say like 2-3 weeks out. I would stay with Natale also. Also is doesn't sound like the Multaq had long enough to build up your system in order to judge whether or not it would be effective for you. I thought I remembered something about it taking 5 days for plasma levels to reach their full levels, but I am not sure. I would also ask your Dr's about this.
Re: Rough Week & Weekend
July 07, 2015 07:55AM
Dang it ALangford!!

Wish you could have called me again before taking AMioderone UGH INDEED!! I know its hard in an ER when you are nervous and are rather new to all this..

We have reams of info on this site about staying way clear of Amio for at least 3 months minimum or longer if you have been on it for some time, but if you only took it once perhaps Dr Natale can do it in a bit less time, but it will delay things a bit for sure ... and you had just your ablation with Dr Natale moved up to Aug 11 from September 2 already and we were both so happy about that ...

Oh darn, in re-reading I see you have been taking it for days now .. get off of it pronto after we confirm with Dr N what he wants you to do .... ugh indeed!!

We need to get you off AMio but dont stop until you hear back from Dr N an I will make contact too. ... give me a call tomorrow and lets discuss it.

For anyone else approaching an ablation NEVER EVER allow any clueless ER doc to give you AMioderone if you have an ablation scheduled within 6 months ahead... clueless I call him or her, if indeed you had informed them that you are in the near term waiting pattern for a very soon ablation to address this arrhythmia.

ALangford, did you tell them about your upcoming ablation?? IF so,. I would go down there to that ER personally and raise some holy hell with the ER doc in attending about dumping AMIO on a poor unsuspecting patient when you had made sure they knew you were scheduled for an ablation in short order .... that is being very clueless indeed, ... if that is indeed what happened?

Sorry for the added delay man, ... go on FLEC or what ever other drug and tough it out if you have too. Or just stay in AFIB next time and take rate control until the ablation if you cant tolerate at all any of the other shorter acting AAR drugs.

And Anti AFIB NO WAY Dr Natale will even consider ablating him if he has been on AMIO within 2 to 3 weeks of an ablation

It has a half life of half way to forever! Basically takes at least 5 to 6 months to entirely clear your system of AMIO but is usually down enough to allow an ablation at 3 momths .. occasionally 2 months on a lower dose and other with certain other extenuating circumstances so definitely will have to check with Dr N for the battle plan.

Do'nt DARE consider letting someone else do the procedure!! That would only compound the problem, big time!. Any EP who would gladly ablate you when he heard you were on AMIO the last few weeks or so, would be in this just for the Money and to hang a new skin on the wall, definitely not to fix your breakthroughs!


IF you try an ablation that soon after being fully loaded on AMIO and a good degree of active triggers can easily be too suppressed by the amioderone to be seen and targeted during the ablation making for a much higher chance of needing another ablation pretty soon, even with isoproterenol challenge.

Just wait it out too you can do it, you will not die. I was in terribly symptomatic persistent AFIB the last three months prior to my index ablation in 2008 with Natale and had no cardioversion but eventually did find a rate control cocktail with a very low dose BB and higher dose verapamil Like we discussed on the phone on Friday I believe it was, and taht finally got my rate below 100 for the last few weeks before my trip from Holland to Austin.

Anyway rest up and take it easy... this too shall pass and just focus on no more delays from now own... call me before taking ANY more drugs from any well meaning but potentially clueless ERs docs and just stay way away from any more AMIO, whether its morning, noon or night!

Cheers
Shannon



Edited 1 time(s). Last edit at 07/07/2015 08:02AM by Shannon.
Re: Rough Week & Weekend
July 07, 2015 12:41PM
Thanks, Shannon.

I was able to get my procedure moved up to 8/11. Shirley is talking to Dr. Natale today about medication. I anticipate no more AMIO and Flecainide with hopefully a plan for rate control.

Quote

Dr Natale will even consider ablating him if he has been on AMIO within 2 to 3 weeks of an ablation

I'm not within that window. He'll still do it right? Five days of AMIO didn't ruin anything I hope.

Call me when you can. I'm available any time today.



Edited 3 time(s). Last edit at 07/07/2015 12:56PM by alangford.
Re: Rough Week & Weekend
July 07, 2015 02:52PM
I believe you are doing the right thing. Stick with The Maestro, Dr. Natale. He has helped me quite a lot. I follow the program outlined for me to the letter.

I wish you the best in your healing journey.

John
Re: Rough Week & Weekend
July 07, 2015 03:25PM
Check with Shirley or Barbara as you still have over a month out for the relatively short duration you took AMIO, that timing might still work, though Im just not sure.

He may just crank up the Isuprel ( isoproterenol) to help get any remaining Mexican Jumping beans hopping during the ablation.

Will ring later when I can.

Hang in there!

Shannon

PS, Good news! just off the phone with Alangford and others and he's still set to go in August... its enough time left to not be a problem due to the short time he was on Amio. the ER doc apparently was unaware of the upcoming ablation so he may have known better, but wasn't aware of the time urgency and was trying to quiet down his heart as effectively as possible which is understandable.

Good reminder, though, for everyone who is still Afibbing and might be in line for an ablation at some point to steer clear of AMIO as you get anywhere close to the procedure, preferably 6 months out the AMIO should be stopped unless in specific cases with extenuating circumstances and, of course, always confirm it all with the ablation EP.

Shannon



Edited 1 time(s). Last edit at 07/07/2015 04:05PM by Shannon.
Re: Rough Week & Weekend
July 07, 2015 05:02PM
Same problem with Multaq too. Long half life and only a slight improvement in toxicity.
Re: Rough Week & Weekend
July 07, 2015 07:18PM
After several trips to the ER and sometimes leaving as bad off as I came in...

Salwa Beheiry at CPMC has gotten me through a couple of rough patches, tweaking meds, telling me what's going on and what to expect next. In 2012 I was in the ER, then admitted to the hospital with atrial tachycardia, HR over 150. I left after about 14 hours in pretty much the same condition, HR around 150, with no driving privileges and the ER cardiologists' admonition "get a pacemaker" ringing in my head. I had metoprol on board, a high dose. Spoke to Salwa, she asked what I had on hand (don't remember what all it was, I did have rythmol and a calcium channel blocker) she prescribed what I should take, I took it, my HR recovered to under 100. The next 2-3 weeks until my next ablation (Natale) I went to work as normal, went for my walks and felt fine. Dr. Natale gave me my driving privileges back. Not anxious to go back to the ER again.

Just talking to the right person can get your frame of mind in a good place. Unfortunately, Dr. Natale is not always available, but many of the people close to him have tons of experience and are equally motivated to get you into a comfortable place.
Re: Rough Week & Weekend
July 07, 2015 08:02PM
researcher Wrote:
-------------------------------------------------------
> Same problem with Multaq too. Long half life and
> only a slight improvement in toxicity.


I was wondering about that, because as I understand it, Multaq was a designer drug being a modified version of Amio.
Re: Rough Week & Weekend
July 07, 2015 08:15PM
Mike E - Your ER experiences are similar to mine before my first Natale ablation back in 2003. I had expected to feel better and be helped but the treatments were not useful.

Eventually, I learned to just ride out the events even though they were very unsettling at first. My HR would often be around 200 bpm. One time, I happened to be wearing a monitor so I took advantage of it and transmitted via phone. The attendant was so stunned he called another cardiologist to the phone and who strongly urged me to go to the hospital immediately. I declined and said this was common; the only difference was I this time I had a monitor to record it officially. My events often lasted 24 - 27 hours... and if they lasted for 30 hours, then I was to call to arrange for an ECV....which sometimes I did have to do. Thankfully, most times, I self converted and the waiting became just tedious.
Even as recent as two years ago when I thought I'd try the ER to help convert, their methods did not help and I was discharged in A-flutter; and, although no one mentioned flutter, I saw it on the monitor but was happy to leave.

I certainly wish you well with your ablation. While I certainly hope you won't have to use the information, when you leave, be sure you understand how to manage a breakthrough should you have one so that you can remain calm. You are in great hands with Salwa and her team.

Let us know how you are.

Best to you,
Jackie
Re: Rough Week & Weekend
July 07, 2015 09:42PM
Hi Jackie,

Thanks very much for your well wishes! But I'm yet another ablation past the one I was talking about in my post. In February this year had another one for the LAA. Next month I go do a TEE to find out if I can get off the xeralto. I have an occasional "skip" and sometimes I get a bit anxious but otherwise nsr. I got a little over ambitious with my workouts and crashed badly (high heart rate most of the day, multiple skips per minute, several episodes over a couple of days). I've restarted after getting a heart rate monitor. Now I don't let my heart rate get over 140 and try to keep it under 130 during aerobic exercise and only do very short strength workouts. I feel fine now. Wish this afib had never happened but life goes on, make the best of it. I enjoy your posts though don't have the time to follow up on everything. Perhaps when I retire!
Best wishes,
Mike E.

PS: three ablations by Dr. Natale: Apr 2012, May 2013, Feb 2015. First afib episode was in the fall of 1995 or 96 I believe. Changed my diet, except for a couple of short periods of brief episodes pretty much afib free until 2010 even while doing Crossfit 3-4 times a week. Then it seemed every moderately intense workout caused an episode. Tried all the supplements, various protocols, researched this site and others. Nothing worked. Then found out Dr. Natale came to CPMC one week a month.
ron
Re: Rough Week & Weekend
July 07, 2015 09:43PM
researcher Wrote:
-------------------------------------------------------
> Same problem with Multaq too. Long half life and
> only a slight improvement in toxicity.


Maybe so, but that is the drug Natale suggested 2 weeks ago when I was in flutter to replace flec. Thankfully, I self converted.

RonH.
Re: Rough Week & Weekend
July 07, 2015 11:33PM
Mike E Wrote:
-------------------------------------------------------
> After several trips to the ER and sometimes
> leaving as bad off as I came in...
>
> Salwa Beheiry at CPMC has gotten me through a
> couple of rough patches, tweaking meds, telling me
> what's going on and what to expect next. In 2012
> I was in the ER, then admitted to the hospital
> with atrial tachycardia, HR over 150. I left
> after about 14 hours in pretty much the same
> condition, HR around 150, with no driving
> privileges and the ER cardiologists' admonition
> "get a pacemaker" ringing in my head. I had
> metoprol on board, a high dose. Spoke to Salwa,
> she asked what I had on hand (don't remember what
> all it was, I did have rythmol and a calcium
> channel blocker) she prescribed what I should
> take, I took it, my HR recovered to under 100.
> The next 2-3 weeks until my next ablation (Natale)
> I went to work as normal, went for my walks and
> felt fine. Dr. Natale gave me my driving
> privileges back. Not anxious to go back to the ER
> again.
>
> Just talking to the right person can get your
> frame of mind in a good place. Unfortunately, Dr.
> Natale is not always available, but many of the
> people close to him have tons of experience and
> are equally motivated to get you into a
> comfortable place.

Instructions are to stop Amio and all rhythm medication and start rate control with Metoprolol. Extremely anxious about next episode. Could mean 35+ days of torture. I've never remained in afib more than maybe 48 hours. I commute 45 minutes every day to work. That's one of my main concerns. Maybe Natale could revoke my driving privileges so I coule work from home.



Edited 2 time(s). Last edit at 07/07/2015 11:34PM by alangford.
Re: Rough Week & Weekend
July 07, 2015 11:47PM
Quote

PS: three ablations by Dr. Natale: Apr 2012, May 2013, Feb 2015. First afib episode was in the fall of 1995 or 96 I believe. Changed my diet, except for a couple of short periods of brief episodes pretty much afib free until 2010 even while doing Crossfit 3-4 times a week. Then it seemed every moderately intense workout caused an episode. Tried all the supplements, various protocols, researched this site and others. Nothing worked. Then found out Dr. Natale came to CPMC one week a month.

Mike,

I did P90X and then started doing CrossFit. My episodes were increasing in frequency over the years but I was still able to be very active. Episodes always at night always when things were slowing down.

After my Natale ablation, I doubt I return to the level of CrossFit. I'll miss it.



Edited 2 time(s). Last edit at 07/08/2015 02:53AM by alangford.
Re: Rough Week & Weekend
July 08, 2015 02:17AM
Quote
alangford
After my Natale ablation, I doubt I return to the level of CrossFit. I'll miss it.

Sorry, not sure I follow.... What is it about your Natale ablation that prevents you from doing your prior level of CrossFit?
Re: Rough Week & Weekend
July 08, 2015 02:34AM
You will be fine Alangford, really, titrate the Toprol if you go into AFIB again to get your rate to 110 or lower /.. or at least under 120bpm, preferably less than 100 and 90bpm would be ideal and in any of those scenarios you can sail into the ablation Aug 12.

I had severely symptomatic persistent AFIB for 3 full months non-stop prior to my initial ablation and as noted finally got it under 100bpm consistently just 2 weeks before my flying from Amsterdam to Austin for the ablation, but only after much trial and error with a number of ineffective drugs in Dutch hospitals before my Hawaii EP told the Dutch EP to try a combo of a very low dose Toprol XL of 12.5mg and around 240mg a day of Verapamil (a pretty big dose) for me and I seriously doubt you would need any combo that large. It worked like a Champ and the last two weeks was easy going.

The anxiety is physical, yes, but also driven by mind stuff and projection of fear that is optional with a little effort at keeping to heart that you are not going to die, it is not that horrible after all, and most of all keep in mind the mantra 'this too shall pass' as it very much will and with each passing day your are another step closer to the freedom of NSR again.

You are almost home free so don't even think the word 'torture' ... I promise you your mental projection about what ever AFIB might arise between now and the ablation will be worse than the reality of it, should it occur.

Take it easy and rejoice in the news you dodged a bullet with the AMIO and don't have to postpone the ablation after all.

Shannon

P.S, just to clarify for future reference, Anti-AFIB and researcher. Multaq is indeed an Amioderone derivative but it has a significantly shorter active anti-arrhythmic half life than does the very long acting Amioderone. The elimination half life of Multaq is around 13 to 18 hours with its suppression of arrhythmia ranging closer to 5 to 7 days while Amioderone's anti-arrhythmic half life is from 10days to 150 days depending on dose and length of time taking the drug.



Edited 2 time(s). Last edit at 07/09/2015 05:32AM by Shannon.
Re: Rough Week & Weekend
July 08, 2015 02:36AM
Quote

Sorry, not sure I follow.... What is it about your Natale ablation that prevents you from doing your prior level of CrossFit?

I don't think he's onboard with lifting heavy. I could probably scale down the amount and the intensity I suppose. But, heavy deadlifts or squats are not ideal for an afibber. That's my understanding of his position.



Edited 2 time(s). Last edit at 07/08/2015 02:48AM by alangford.
Re: Rough Week & Weekend
July 08, 2015 02:52AM
Quote

The anxiety is physical yes but also driven by mind stuff and projection of great fear that is optional with a little effort at keeping to heart that you are not going to die, it is not that horrible after all, and most of all keep in mind the mantra 'this too shall pass' as it very much will and with each passing day your are another step closer to the freedom of NSR again.

You are almost home free so don't even think the word 'torture' I promise you your mental projection about what ever AFIB might arise between now and the ablation will be worse than the reality of it should it occur.

Take it easy and rejoice in the news you dodge a bullet with the AMIO and don't have to postpone the ablation after all.

That is good news! Good perspective all round. Thank you, Shannon!
Re: Rough Week & Weekend
July 08, 2015 03:51AM
Alangford,
Many here, including myself, have a great amount of sympathy for where you are now. Looking back, those weeks and months; no, years, of uncertainty, of thinking you have it beat and then it comes roaring back, were pure hell. But, to put it in perspective, for those of us with otherwise healthy hearts and bodies, as my present cardiologist told me, "AFIB is a nuisance condition". It is not likely to kill you, you just have to get to the other side where it is under control. Hopefully, after this procedure you are done.
I don't do crossfit now, too many procedures, too much time recoverying. Tried to come back too fast after the first one, then needed the second and third. The symptoms changed, first afib, then flutter, then SVT's. But, if I can recover over time, and perhaps get my resting heart rate back into the 70's, I don't rule out going back to once or twice a week of crossfit. I really enjoyed it and made some very good friends. It's not necessary to lift really heavy weights to be fit. You can get very strong with short workouts and medium weights done often enough. I've become a fan of Pavel Tsatsouline (strongfirst.com). Best wishes.
Re: Rough Week & Weekend
July 08, 2015 03:02PM
YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Quote

Good morning Ashley,
We just had Dr. Natale’s schedule open up next Monday (office visit) and Tuesday (ablation)….would you be interested?
Thx
Amy
Re: Rough Week & Weekend
July 08, 2015 05:30PM
Cheers!!
Re: Rough Week & Weekend
July 09, 2015 07:54PM
Thanks Shannon -

"half life of Multaq is around 13 to 18 hours"

That is a big advantage. It should be used in lieu of Amio unless a patient knows that ablation will not happen for a long while. Very small differences in the other measures, efficacy and toxicity.
Re: Rough Week & Weekend
July 12, 2015 02:14AM
Glad you were able to get in fast-so was I. Best wishes for the procedure- has each one taken less time than the prior one? I do wonder how many Dr. Natale has done on a single patient.....
Re: Rough Week & Weekend
July 13, 2015 01:11AM
Great news re appointment. Hope your present state is soon but a memory,
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