[en bloc]

Hi all,

Just want to see if anyone has experience with an EP study & ablation used to treat/correct the errant electrical signals that cause severe tachycardia resulting from autonomic neuropathy...which is of course a part of PN.

My autonomic system has been failing for years in ALL areas possible, but the cardiac aspects seems to have taken the brunt of it. I have NMH (neurally mediated hypotension). Significant coronary artery vasospasms as well. Also had a pacemaker implanted in 2004 for rates in the 30's (while sitting up and trying to function), but still struggle with tachy rates in excess of 200 at times. My pacer acts as a event recorder and picks up any rates in excess 180. Interrogations of the device every six months have repeatedly shown multiple recordings (usually 4-10). The last one had a new high of 27 "events" (after just a couple months)...that also correlated to date/times I list having symptoms.

The idea of doing an ablation has come up several times over the years, but now seems to be at a "necessary" point with this number of events and scheduled for May 16th.

I know it's not an overly common procedure, but hoping that some here suffering with autonomic dysfunction from PN have at it done and can share their experience. It's about a 5 hour procedure, but seems to have a fairy good success rate from what I've read online. It's the fourth heart surgery (open heart, pacer, and routine catheter), so not really nervous about the procedure itself. Just want to hear about any success stories and certainly about any complications.

[Aussie99]

Originally Posted by en bloc

Hi all,

Just want to see if anyone has experience with an EP study & ablation used to treat/correct the errant electrical signals that cause severe tachycardia resulting from autonomic neuropathy...which is of course a part of PN.

My autonomic system has been failing for years in ALL areas possible, but the cardiac aspects seems to have taken the brunt of it. I have NMH (neurally mediated hypotension). Significant coronary artery vasospasms as well. Also had a pacemaker implanted in 2004 for rates in the 30's (while sitting up and trying to function), but still struggle with tachy rates in excess of 200 at times. My pacer acts as a event recorder and picks up any rates in excess 180. Interrogations of the device every six months have repeatedly shown multiple recordings (usually 4-10). The last one had a new high of 27 "events" (after just a couple months)...that also correlated to date/times I list having symptoms.

The idea of doing an ablation has come up several times over the years, but now seems to be at a "necessary" point with this number of events and scheduled for May 16th.

I know it's not an overly common procedure, but hoping that some here suffering with autonomic dysfunction from PN have at it done and can share their experience. It's about a 5 hour procedure, but seems to have a fairy good success rate from what I've read online. It's the fourth heart surgery (open heart, pacer, and routine catheter), so not really nervous about the procedure itself. Just want to hear about any success stories and certainly about any complications.

Hi en bloc,

I beleive I had autonomic complicatons with my PN too. But a milder form. I had palpitations and labile BP. Sometimes I would have chills even when it was hot. Too some degree some gastro issues. The problem was that they had put me on so many meds when I got PN, and my lack of experience with meds, I had no idea about sideffects and so forth. I havd significant gastro issues for a year only to find the beta blocker I was using was causing this malfunction. I was also taking mega doses of vitamins which were causing issues too. Sorry I can't be of more help to you. I wish you the best.

Aussie

[en bloc]

Originally Posted by Aussie99

Hi en bloc,

I beleive I had autonomic complicatons with my PN too. But a milder form. I had palpitations and labile BP. Sometimes I would have chills even when it was hot. Too some degree some gastro issues. The problem was that they had put me on so many meds when I got PN, and my lack of experience with meds, I had no idea about sideffects and so forth. I havd significant gastro issues for a year only to find the beta blocker I was using was causing this malfunction. I was also taking mega doses of vitamins which were causing issues too. Sorry I can't be of more help to you. I wish you the best.

Aussie

Thanks Aussie,

I have many meds and it can be challenging to find the right combination without making other problems worse. It's very difficult to take meds to keep the BP up, while taking meds to keep the heart rate down, or to keep the coronary arteries out of spasm (some of these meds counteract each other). Like a dog chasing it's tail...LOL This is part of why he feels the ablation is the best move.

The gastroparesis can make for improper absorption of nutrients. Yet taking vitamins and other supplements can upset the stomach when they sit for hours. Sort of a catch 22.

I really thought autonomic dysfunction would be more common, being that it's a part of PN. I guess it goes back to whatever is the underlining cause of the PN.

[cyclelops]

I apologize for not being around much....I am either on my feet or flat on my back...one or the other lately. Overloaded with adrenaline or recovering from it. I feel like the leading lady on Dance With Wolves. For those of you who know where I live, and what I am dealing with.... My new name is: 'Stands With Fist'.....anyway...(I have little to lose, so I can be mouthy, lol).

En Bloc....I have cardiac issues similar but not as severe as yours. My neuro told me (keep in mind he is not God), he told me that when the neuro system is not working, the heart won't work well either, if it is affected by the dysautonomia.

The cardio brought up doing an EPS on me. (I have at least 3 different arrhythmias)....and then an ablation as needed. Neuro said, the body will just develop NEW arrhythmia in what pathways are left. He said it is a difficult procedure for those with dysautonomia, but you already know this stuff since you have a pacemaker. As crazy as my arrhythmias are, I have noticed when I get off as many meds as I can, the arrhythmias become less common. I guess it depends if your dysautonomia is the cause of the arrhythmia or something else is.

You are in a difficult position. Keep in mind an ablation is a destruction of tissue, and will produce scar tissue. If you have a defib implanted, would that not handle any errant heartbeats?

In my experience, dysautonomia is hard to handle an organ at a time. Treating organs in isolation, is hard in dysautonomia.

That said, you have really good docs. I guess you need to weed thru the information and make a decision. You and I have some really unusual issues with severe dysautonomia. I am leaning toward as little intervention as possible, because my experience with intervention has been it makes me worse. Not every one has the same result as I do. Every med I take seems to kick back at me with some untoward side effect. I guess you have to figure out what works for your body.

[en bloc]

One of my questions I'd plan to ask was whether more inappropriate arrhythmias would develop...and you just answered that for me. I sort of thought this would be the case.

This is not the first time the EPS has come up, but we kept trying to control with meds. This past fall we tried exactly what you suggested...to "clean house" and reduce and/or eliminate meds. The control of cardiac spasms and NMH improved, but arrhythmias increased significantly. Clearly the beta blocker we dropped was doing much more than we thought, but it doesn't play well with other cardiac meds in patients with NMH and spasms.

The hope is to eliminate the errant signals & open doors for better control all the way around with less meds. If new pathways are affected in the future, then I guess there would still be the option of adding an ICD with my pacer. Either way, both are invasive procedures.

This cardio has an excellent success rate (as does the JH arrhythmia center itself). Being that he didn't want to do this several years ago and has played every meds game possible, I know he wouldn't haven chosen this path without careful thought.

I agree that treating individual organs in dysautonomia is difficult, but to date, there is nothing to do as a whole. Birnbaum said once those autonomic signals are gone....they're gone! So I'm pretty much autonomically dependent with intervention whether it be meds, devices, etc at this point.

[Aussie99]

Originally Posted by en bloc

One of my questions I'd plan to ask was whether more inappropriate arrhythmias would develop...and you just answered that for me. I sort of thought this would be the case.

This is not the first time the EPS has come up, but we kept trying to control with meds. This past fall we tried exactly what you suggested...to "clean house" and reduce and/or eliminate meds. The control of cardiac spasms and NMH improved, but arrhythmias increased significantly. Clearly the beta blocker we dropped was doing much more than we thought, but it doesn't play well with other cardiac meds in patients with NMH and spasms.

The hope is to eliminate the errant signals & open doors for better control all the way around with less meds. If new pathways are affected in the future, then I guess there would still be the option of adding an ICD with my pacer. Either way, both are invasive procedures.

This cardio has an excellent success rate (as does the JH arrhythmia center itself). Being that he didn't want to do this several years ago and has played every meds game possible, I know he wouldn't haven chosen this path without careful thought.

I agree that treating individual organs in dysautonomia is difficult, but to date, there is nothing to do as a whole. Birnbaum said once those autonomic signals are gone....they're gone! So I'm pretty much autonomically dependent with intervention whether it be meds, devices, etc at this point.

Never give up hope is what I have learned. I had a very erratic heartrate for quite a long time. It eventually got better. I too am on beta blockers. The body has a way of compensating. Best of luck to you mate and your not alone in these autonomic issues. It can be so frustrating. Aussie

[stagger]

Originally Posted by en bloc

One of my questions I'd plan to ask was whether more inappropriate arrhythmias would develop...and you just answered that for me. I sort of thought this would be the case.

This is not the first time the EPS has come up, but we kept trying to control with meds. This past fall we tried exactly what you suggested...to "clean house" and reduce and/or eliminate meds. The control of cardiac spasms and NMH improved, but arrhythmias increased significantly. Clearly the beta blocker we dropped was doing much more than we thought, but it doesn't play well with other cardiac meds in patients with NMH and spasms.

The hope is to eliminate the errant signals & open doors for better control all the way around with less meds. If new pathways are affected in the future, then I guess there would still be the option of adding an ICD with my pacer. Either way, both are invasive procedures.

This cardio has an excellent success rate (as does the JH arrhythmia center itself). Being that he didn't want to do this several years ago and has played every meds game possible, I know he wouldn't haven chosen this path without careful thought.

I agree that treating individual organs in dysautonomia is difficult, but to date, there is nothing to do as a whole. Birnbaum said once those autonomic signals are gone....they're gone! So I'm pretty much autonomically dependent with intervention whether it be meds, devices, etc at this point.

Hello en bloc,
I live near Harrisonburg am wondering what hospital you use, my brother had stents at Winchester a few years ago, good luck.

[en bloc]

Originally Posted by stagger

Hello en bloc,
I live near Harrisonburg am wondering what hospital you use, my brother had stents at Winchester a few years ago, good luck.

Thanks for the well wishes.

I'm "sort of" close to the Front Royal/Luray area. I have been to Winchester once during an emergency, but I use Johns Hopkins in Baltimore, MD for most of my care. Long haul, I know, but I have some rare combinations of problems and have found a good team of doctors there.

[cyclelops]

This is going to sound like a crazy suggestion from me, since I am really not fond of benzodiazepines, but they do a great job of calming down the autonomic system. In your case, it would seem a possible option? Just a thought. I know your options are limited, which is why I am suggesting this. Other than that one suggestion, I guess you have to trust the doctors, and at least you are at Johns Hopkins. Don't rush your decision if you don't have to, think things over. Dysautonomia is always worse at both equinoxes, Fall and Spring. It tends to settle some in Summer and Winter...odd factoid, but true. Hang in!

[en bloc]

Originally Posted by cyclelops

This is going to sound like a crazy suggestion from me, since I am really not fond of benzodiazepines, but they do a great job of calming down the autonomic system. In your case, it would seem a possible option? Just a thought. I know your options are limited, which is why I am suggesting this. Other than that one suggestion, I guess you have to trust the doctors, and at least you are at Johns Hopkins. Don't rush your decision if you don't have to, think things over. Dysautonomia is always worse at both equinoxes, Fall and Spring. It tends to settle some in Summer and Winter...odd factoid, but true. Hang in!

I was surprised, as I know how you feel about benzodiazepines. I'm also not a fan...I have seen what they've done to a family member. I'd probably vote for major surgery before running down that trail...LOL That said, I never knew they were used for this purpose, but I would have guessed they could further suppress the autonomic system. Maybe it would settle down tachy rates, but wouldn't it also create more problems with the gastroparesis, and neurally mediated hypotension? I clearly don't know enough about them or their action. Thanks for the tip...I'll do some reading about how it's used for this.