A-fib still trying to break through

[Largehearted]

This evening while sitting perfectly still I went into a-fib for a short period of time.

This is the second time in the last month that I have had a break through episode despite 320mgs of sotolol a day. Hopefully I can stay in proper rhythm until I see Dr. Lever in May for my annual check up.

I really do not want to do amiroderone. When do they look at pulmonary vein ablation as a means of controlling a-fib. Also is that recommended / effective for HCM? Are there other meds that work well that might not have the serious side effects?

I am open to any good advice you might have.

Peace,

Leon

[Sarah]

First, atenolol will never prevent afib.

Second, amiodarone is not your only choice for medical afib control. It wasn't actually approved to be used as the first choice for afib , they just marketed it that way and got fined for it. but the damage was done. http://www.affacts.org/Medications/amiodarone.html

Sotalol, Norpace, and Tikosyn are other drugs you can try before hitting the amiodarone.

the ablation you mention (not to be confused with a spetal alcohol ablation, by the way) frequently fails in HCM patients because we have an infinite number of ways for the afib to start compared to people with normal heart muscle.

I don't know the stats on the catheter-based procedure, but the open heart Maze (which is another afib ablation technique) is 97% successful on non-HCM afib and _perhaps_ 80% successful on HCM afib. But keep in mind that in 5 years, the Cleveland Clinic only did 10 Mazes on HCMers.

I'm not trying to rain on your parade, but ablations in HCMers is just not the cure it is touted to be with regular afib patients.

Talk to your doctor about other medications and remember that you are in charge of your care.

best wishes

S

ps i'm in afib.

[Lisa Salberg]

There is not much data on the success of Pulmonary Vien ablations in HCM and there is also little on MAZE in HCM - there is a bit more on MAZE. No center has mountians of experience in these procedures because they are rather rare in any popluation then figure how many with HCM may need them.

The first step is to medicate to attempt to stop the A-fib. The other key is to make sure you are on blood thinners to ensure you are protected from the risk of stroke.

Best wishes,
Lisa

[Largehearted]

Sarah.
I think you may have misread my post. I am on 320 mgs of sotolol daily not atenolol. I used to take 50 mgs of Atenalol daily and it mad eme tired, I would probably sleep all day with 320. :) Perhaps norpace and tikosyn will be options for me. So far my GP and cardiologists here have talked more about Amiroderone. Tikosyn was mentioned once and no one has said anything about Norpace.

I was kinda hoping to get off some of the many drugs I am taking. Lisa I am on cumodin so should be Ok in that department.

In any case, I will talk about all of this with Dr. Lever in May and see what he recommends. Thanks for your input.

Peace,

Leon

[Sarah]

oops. sorry. yeah.

i'm not surprised at what you report re: what the doctors are talking about as that is the standard way to go as amio is pretty well implanted in most doctors as the afib drug of choice.

norpace is not as strong as amio but it is a potassium channel blocker, as are tikosyn and amio. i've taken the first two and both worked well. i have refused amio.

s

[Lisa Salberg]

Just a note to add and a reminder:

Sometimes when responding to posts I may cover an item that the original poster may well know (such as risk of stroke from A-fib). This board is visited by many non-posters who read only and never post for this reason sometimes I will cover items that I know the poster is aware of but a 'newbie' may not be aware of.

To the 'newbies' - if you are reading a post about a topic you are not sure of please make sure to head back on to the website to look up more information and also feel free to call the office for additional information.

There are no silly questions and nobody will judge you for asking anything at all... we have all been there before and hope you will be there for others in the future as you become more up to date on HCM.

Be well everyone!
Lisa

[sickora]

I went through some of what you are going through. Sotolal did not prevent my a-fib either. I went on Tikosyn in February of this year. I still have episodic a-fib, lasting from a few seconds to 10-20 minutes, but I don't notice it anymore. On Sotolal I could always tell when I went into A-fib.

I also just saw Dr. Tchou at the Cleveland Clinic about the pulmonary ablation. He quoted me a success rate of about 70% for my particular HCM. Since I'm not really having any symptoms from the a-fib, we're leaving it alone for now. Good luck and I hope you can get it under control.

[tommysgirl]

Largehearted,

Most cardiologist do prefer amiodarone. It seems to control and lessen the episodic episodes. It does have more side effects than some of the others. While working for 8 cardiologist and 6 practioners, I saw amiodarone prescribed more than any of the others and multiple pts were on it for years. These pts were also informed of the importance to keep up their lab work and PFTs, in order to catch a side effect or problem early on.

As for the other types of treatments of a-fib, I can give you some first hand experience. Tommy went for the RFA (radio frequency ablation) to get off amio in 2003. There was a 95% success rate. He went back into a-flutter within 3 months. He just had the MAZE procedure, when he had his myectomy at CCF. He went into a-flutter/a-fib on post op day four. The EP docs were able to get him in sinus by switching a mode on his pacer. They need to be more specific in their descriptions, due to not all cardiac conditions respond to these procedures in the same way. Especially HCM pts.

I hope this helped somewhat.
God Bless!
Sherry