Feeling like I am going to pass out with Flecainide PIP

When I take Flecainide PIP at even only 250+mg, I get the following side effects:

Having trouble speaking (as in finishing sentences).
Difficulty moving around ( as im starting to walk, then collapsing to my knees after taking several steps).
And at 300mg bolus dose (PIP) I start to pass out, and struggle to stay alert.

These side effects are transient, only lasting for 30-90 minutes, corresponding to when the drug is at highest concentrations.
It sure feels like Heart Failure, as I previously had that condition.

When taking Flec PIP, my EKG has shown AFIB, with an Atrial rate of 102, and an Ventricular rate of 95.
I keep reading that the Atrial rate in AFIB is supposed to be 300-400. What am I doing at only 102? Is this the Flec slowing down the Atria? I guess I need to figure out what my Atrial rate is in AFIB, without the Flec.

I also tend to get episodes of Flutter when I take a Bolus dose(PIP) of Flecainide. The thing is this, both my Atrial rate, and my Ventricular rate is exactly the same at around 100. This has been measured several times in the ER room by EKG.
Is this not then a 1:1 AV-Node conduction, that is supposed to be a bad side effect of taking Flecainide PIP? Or if your Atrial rate is that low, then it is not a big deal?

I am also getting reading of "non-specific intra-ventricular conduction delay", and "ST-Elevation" on my EKG's, when I take the Flec-PIP.

I was on about 15-20mg of Bystolic (beta-blocker) when this occurred.

Any comments are appreciated, I realize this is a little technical, but I posted this in-part because I know that many of you on this site use or have used Flec-PIP. Anyone else getting these side-effects?



Edited 3 time(s). Last edit at 03/18/2022 06:19PM by The Anti-Fib.

Wow.
I take 300mg a day with no problems but obviously my blood concentration will not peak at the same level as you. (Two 150mg does 12 hours apart)
I would not use it as you do (at all) if you get those symptoms.
If you have had previous heart failure are you not at risk of sudden cardiac death taking flec as you do?
I understand your quest for knowledge about the technicalities of what it is doing to you, but personally I would move on to something new (an easy statement to make I know)
That just sounds plain dangerous to me.
Sorry to sound dramatic but your symptoms sound pretty darn dramatic to me.

Mark



Edited 1 time(s). Last edit at 09/21/2014 07:33AM by Robo11.

I never had those side effects. I agree, I'd not use it with that kind of reaction. What does your Cardio/EP have to say about it?

My Heart Failure was resolved. From EF of 20% to 64%, and Echo's have been good for 3 years now.

What was bad, was that upon referral from my EP, I went to ER room, took the 300 Flec (1st time that high of dose), and then had an EKG done. My Doctor faxed them orders for STAT treatment, but they somehow got misplaced. It was a busy day at this ER room.

Now the EKG was normal AFIB at that point, and I felt fine. 45 minutes later I am begging the ER staff for a Heart monitor, as I feel as though I am about to pass out. The nurses (2 of them) shrug me off, and one of them laughs at me and said my EKG was fine, nothing to worry about, saying that the ER Doctor looked at my EKG diagnosing it as controlled afib, and thus not an emergency. I tried to explain to them what I did with the bolus dose (300mg PIP), but they didn't grasp what I was talking about. They called over the security gaurd to escort me away from the side of the ER room closest to the staff. That is when I collapsed to my knees trying to walk away. They still think I am faking it. Finally they call me back to a waiting room in the back, but that is worse, because I am now all alone and my condition is deteriorating. I am laying there trying to call out, but I can't talk loud enough to be heard. I kick over a trash can, trying to get someones attention. An older nurse comes by and scolds me, saying that Flecainide can not cause the symptoms that I am complaining about. I desperately I am now trying to call out to my EP Doctor, but I can't get a cell-signal. I go for about 30 minutes of thinking I might pass out and die, and try not to lose consciousness. I wish that I had anybody, even an enemy to help me out. After awhile I start improve, and I manage to leave the ER and stumble a bit out to the parking lot, to call my Doctor. So I come back into the ER room now, and they scold me saying they tried calling me, and that I must be fine to be able to go out for a walk in the parking lot. It's been about 90 minutes now, and I was feeling a bit better, being able to move around a little.

Long story short, 3 hours later I got cardioverted, after going from AFIB, to Flutter. I never did get any of the staff to really understand what the PIP strategy with the Flecainide was. The Head nurse openly complained of having to deal with my Doctor over the phone, who was by now trying to sternly deal with the situation. I could get no treatment or help when I needed it, not another EKG, not an Pulse Oxymeter, not anything. I had to borrow some ladies watch just to check my pulse rate.

Anyway I survived this, and am now looking back trying to figure out just what the Flecainide did to me.
I did discontinue everyday use of the drug, but still use it at 200mg for PIP conversion.



Edited 3 time(s). Last edit at 03/19/2022 02:03AM by The Anti-Fib.

Horrific.
You are dealing with persons who don't have the mental capacity to listen and learn or think outside the box.
That's a major problem that is not easily remedied.

Mark



Edited 1 time(s). Last edit at 09/21/2014 08:54AM by Robo11.

What an awful experience!

"my EKG has shown AFIB, with an Atrial rate of 102"

How do you read an atrial rate on an ECG?


George

Anti AFIB,

What is the name of that ER so we can all be sure to avoid it if we happen to be passing through your town and need one?

I suppose it's possible but I have not heard of my a 1:1 flutter at low rate of 100. What did your EP say about all this when you next met with him and reviewed the EKG and your symptoms? Where you taking any beta blocker or calcium channel blocker along with the PIP Flec to help control rate and possibly avoid proarrhythmic flutter?

If so, with your past history of HF either of those two drugs might contribute to some of those symptoms. I'd be very leery of FLEC PIP as it is with those symptoms. How often do you have breakthroughs and require PIP?

Shannon



Edited 1 time(s). Last edit at 09/26/2014 03:59PM by Shannon.

That's a terrible story ... I can't imagine going through that. Do you have another option for emergency care in your area? I'd not want to have a repeat of your 'care.'

One of my experiences that lowered my HR so much ...down to 40 bpm was after an ECV... resulted when they gave me far too much cardizem and I thought I was dying. I could hardly stand up... had to bend over to get the blood in my head. They argued that 40 bpm was not too low. After this second ablation, Dr. Natale said not to take a calcium channel blocker but that seems to be the standard of care in the Urgent Care/ERs.

In the past, when I've had to use the PIP Flecainide regimen, the instructions were from Dr. Natale that's it's important to first take the beta blocker.... metoprolol... 25 mg... to slow the heart rate which is typically over 100 bpm (for me). Wait 30 minutes and take 150 mg Flecainide. Then, wait at least an hour before taking a second dose if not converted. Typically, it works in about 75 minutes without the second dose. That worked very well for a number of years and I never wanted to try the 300 mg dose immediately and without the beta blocker first. He said that just the flecainide alone might cause problems.

However, if the afib flips right into A-flutter... which became my norm for most of the events during the past 2 years, then the PIP protocol did nothing and an ECV was required. The pattern was it started out with the typical afib chaotic rhythm and HR between 100 and 140 at least...and I'd take the PIP and in about 30-45 minutes, the HR would slow and be a steady rhythm but it was flutter at the lower rate which is more comfortable and less impairing ....at least for me.

Jackie

My PIP experience taking diltiazem ( forget the dose) with 300 mg of Flec, worked the first 2 times, then stopped working the third time, It took 12 hours to convert. The 4th time I tried it I went into flutter for 38 hours and almost had a tee followed by a conversion. Thankfully I converted and never took the flec again.

John

GeorgeN Wrote:
------------------------------------------------------
> "my EKG has shown AFIB, with an Atrial rate of 102

> How do you read an atrial rate on an ECG?

George, The Atrial rate is not showing up on any of the 1-page printouts of the EKG's.
It is however showing up in the detailed EKG description in the medical records from the Hospital.

The Atrial rate is measured by the frequency of the P-waves, and the Ventricular rate is measured by the frequency of the QRS complexes.

Shannon:
About the 1:1 ratio: The EKG's (3 of them) actually say Atrial Tachyardia, not Flutter, a nurse and my Doctor told me it was Flutter, it does sort of look like it, but how can they not just raed the top desription on the EKG? I will ask the Doctor to clarify this, I have heard of the EKG machines making mis-diagnosises.
Also I see that the rest of the EKG's of AFIB, show an Atrial rate from 300-400, although I do have 1 with 102/95.


My normal AFIB rate is also low, varying at 75-120 without rate control drugs.
I use Bystolic 5mg when in NSR as routine maintanence, and then take 15-20 mg immediately on onset of an episode, and then take 40mg of Bystolic/per 24 hour period. This controls my rate at about 75-80
I am not sure how being a AMLAF, VMLAF effects use of a Beta-Blocker. I thought I was an Adrenergic LAF'er, but now I think I am mixed, as when I get stressed out or real hungry, I eat to fast, and trigger episodes that way. I was having episodes after exercise, but now realize that that was when I was gulping down food, especially cold stuff like smoothies.

I have been having episodes about every 6-8 weeks, but I am doing better in the last several months, as I increased my Mg dose from 300 to 600mg. I had been slacking off on taking the Magnesium.

I am going to meet with my main EP Doctor again, not sure if he saw the EKG's or not. I will take the entire Hospital records
to the next visit. He did say not to take the 300 dose again, that a lower dose was required, and he questioned whether or not I should even be using it PIP at all. My secondary EP doctor said he looked at the EKG's and nothing horribly wrong, just Flutter and AFIB, but I am not certain he actually looked at them or just had a nurse look at it.

What other PIP is available for self-chemical cardioversion? I have tried Propafenone, and didn't like it at all, and it did'nt work. I had another non-cardio Doctor tell me to try a cocktail all at once of oral Mg 800mg, + 3g of Taurine and something else, not sure what, maybe K+.



Edited 3 time(s). Last edit at 09/24/2014 03:04AM by The Anti-Fib.

Were you able to check BP during the episode that brought on the pronounced weakness?

AntiFib,

"The Atrial rate is measured by the frequency of the P-waves, and the Ventricular rate is measured by the frequency of the QRS complexes."

Agreed, however my understanding is that P-waves are usually absent in afib. Most examples I can find agree.

George

No single impulse depolarizes the atria so there are no P waves during afib. One way to tell if it is NOT afib is to see P waves - if that is the case then it is another type of irregular arrhythmia.

GeorgeN :

If I have time, I will ask my EP about that later this week. I was wondering about that also. Maybe the EKG machine can measure all of the tiny P-waves caused by fibrillation not visisible to the eye on the print-out. Also I was refering not just to AFIB, but also to A-Flutter.



Edited 2 time(s). Last edit at 09/24/2014 02:51AM by The Anti-Fib.

Tom :

My BP is fineduring these episodes using Flecainide-PIP, averaging around 135/80 which is a little higher than normal, but that may be because I was in the ER room.

I know what it feels like to have really low BP, one time I was at 80/45, while not taking the Flecainide. That felt more dizzy, when I stood up, etc. These episodes felt just like bad Heart Failure, which I had before with Ejection Fraction of 20%, and during these episodes of taking Flec-PIP it felt much worse that that.

I'm just going to stop taking a bolus dose of it altogether, maybe just take a good daily dose of 150mg twicde a day, and hope it helps me to convert that way. The high dose never did convert me right away anyhow, I was taking the bolus dose about an hour after onset of episode, but I would never convert until 24-36 hours later, when the drug concentration was actually lower.

Update:

Shannon, you were right it did indeed turn out to be Atrial Flutter, but ratio was 2:1, not 1:1.
The EkG machine made the same mistake on 3 different EKG's.
The second p-wave was being buried in the QRS complex wave, so it was'nt seen by the machine,
and it wasn't noticeable to me as I don't know all the details of how to read an EKG.

I guess the EKG machines are not very good at interpreting the information, and even an ordinary ER room Dr.
makes mistakes on interpreting EKG's.

Anti AFIB,

Sorry for the delay, I did some checking as well and two of my key EP sources said that 1:1 flutter typically manifests in the 200 bpm range and there about, as I experienced that dark day in Holland. Thankfully, it only really kicked into 1:1 flutter once I had gotten to the local ER in Nijmegen even though the high speed flutter my early morning AFIB episode had flipped into that day about an hour or so after the PIP Flec dose, was also rocking and rolling at extreme levels for the three hours prior to me making it to the hospital as well. At least there were several Cardios around my bed and an EP showed up to help with the conversion as the event seemed to really stimulate some urgent interest and attention there at the hospital. And afterward at discharge once temporarily stabilized, I was issued a stern warning that I was never to let Flecanide pass my lips again.


Anyway, both of my EP friends said that we don't see true 1:1 flutter anywhere close to below 100bpm so while I would double check with your EP about the strange symptoms at times on Flec PIP and would not take so large a dose .. if any at all ... of that drug anymore as it seems you are lowering the dose anyway, at least you don't have to worry about periodic 1:1 flutter episodes coming out of the woodwork.

Be well,

Shannon

Jackie
Are you going to have an ablation?