Sushi

Wow! Looks uncomfortable. Hope it heals well now that the recorder is out. Thanks everyone for the feedback on hypoallergenic electrode patches. They told me I’d get the Holter epatch so I’ll ask for hypoallergenic. The last time I wore an external monitor it was a big brute of a thing but it seems like the newer ones are easier to wear. He prescribed it for a week, so that is better than 30 days. To get some arrhythmias popping up I’ll need to stop the antiarrythmic drug I’m taking—funny to seek out arrhythmias!

A bit OT, but for any of you who have had a holter monitor recently (epatch) do they have them with hypoallergenic stickers? I am about to get one as the EP who is doing my ablation wants a more detailed picture of my arrhythmias than my pacemaker gives him. When I have worn them before they really itched!

Hmmm, are you happy with this EP? Seems like they should be concerned with anything that is causing a negative impact on your life. Finding a good EP can be hard.

Yes, Flecainide gave me complete heart block which can be fatal--luckily I had a pacemaker though, even with it compensating, it was awful! This procedure may be applicable to you, but I doubt if many EPs know about it. The EP who is doing my ablation has done more ablations than anyone else in the US and said that he would ablate the autonomic ganglia (he knows that I have Dysautonomia) but I want to be sure that he is aware of the exact protocol used by the doctor referenced in the cardioneuroablation thread. Autonomic testing showed that my parasympathetic and sympathetic systems are sort of competing to run the show but that the parasympathetic is dominating. So I responded well to Strattera which is a norepinephrine reuptake inhibitor. As I understand it, this would make me a good candidate for cardioneuroablation, though I am not sure I fully understand it. I think that it is quite possible for adrenaline symptoms to arise from the body trying to compensate for an overactive vagus nerve. That is more or less what my autonomic specialist thought was happening with me. Maybe some of us will have good results from this. I choose to be hopeful!

Hey, have you seen the thread here about cardioneuroablation? This is cardiac ablation that also ablates the autonomic ganglia in the heart--in other words, your secret hope! I am accepted for an ablation and am trying seeking the details of the protocol used by the EP who is pioneering this procedure. I hope to have it included in my Afib ablation.

Flecainide and Propofanone are both the same class of antiarrhythmics and have black box warnings (with reason: I just had complete heart block from Flecainide). Beta blockers do not have these warnings. Also, from the cardiac forums I follow, some find that Magnesium Taurate helps a lot with ectopics.

Thanks! What type of further testing is being requested? And, are you working with Dr. Peem Lorvidhaya's practice in Maryland? Since he seems to be working specifically with POTS and other types of dysautonomia by ablating the autonomic ganglia in the heart, I am trying to learn more about his specific protocol.

Have you had further thoughts on this? I have been trying to contact the clinic in Maryland that specializes in this to get more technical information to help guide my EP when for my coming ablation. I’d like to be in touch and compare notes if you are still exploring this.

Have you considered getting a Kardia external event recorder? They are widely accepted by cardiologists as reliable and very easy to use—you only need the very small device and a smart phone or tablet. They computer-diagnose 6 types of abnormal patterns and you can easily email the ECG to your doctor. My cardiologists have really appreciated receiving Kardia ECG strips. As far as pauses, I had no idea how many I was having until I got a pacemaker—what a relief!

I will be having this procedure sometime in the next few months as part of an ablation for Atrial Fibrillation. I had been cautious about having a cardiac ablation knowing that they would likely ablate the autonomic ganglia in the heart and I did not know how that would affect dysautonomia. I have found an electrophysiologist who does this on a regular basis and I will send him this article and hopefully get some comments. He has worked with dysautonomia patients though in the context of Afib. The autonomic ganglia in the heart are often sources of the errant electrical signals that cause Afib. Thanks for post this article as I have never seen this topic discussed before.

Now that is interesting! Thinking back, I was indirectly hit by lightning twice when I was younger. Once I had my hands in the dishwater in the sink when lightning hit the ground about 20 feet away. I was thrown across the room. Could that have started this whole mess?

I found that fish oil supplements caused PACs for me. Searching the literature, I found that fish oil can be either antiarrythmic or pro arrhythmic, so this is just another variable to look at. Good luck!

Another alternative is to go to a sports store and look at the binders (they are probably called supports) and try some on they usually have Velcro closings that allow you to adjust how tight they are. I think weight lifters use them. I have also used a girdle that fastens with hooks and eyes or zips up. Spanx just don’t have enough compression.

That is great to hear! I have taken Clonidine (it was not a good drug for me though my autonomic specialist had me try it for a good while), though I have not taken Cozaar. I have been on most of the drugs usually prescribed for dysautonomia and though my electrophysiologist agrees that my Afib most likely is the result of dysautonomia, I have not found a way to treat dysautonomia that improved my Afib. So glad that you did.

Thanks again. I have an update: I was able to contact the electrophysiologist who would do the ablation--he has done more ablations for Afib than anyone else in the country and is very familiar with working with the autonomic ganglia in the heart. He felt that ablation would not affect my dysautonomia and will discuss the options we would have with me before I go into the procedure. 75% of his ablations are done on patients with complex medical conditions that put them at higher risk, so he has seen everything. If all goes well, I will be scheduled for sometime this summer. It would involve travel and one night in the hospital so it has been a big decision, but it feels like the right one. After 6 years of medications with significant side-effects (one was potentially fatal) I have had enough of these drugs!

When I lived on the coast of the Florida panhandle, summer was indeed difficult. I had to adjust my wake sleep schedule so than I stayed up till about 3 a.m. in order to get some outdoor time when it was not so hot. Moonlight swims in the pool! During daylight hours I had to stay inside or, if I had to go out, use a frozen cooling vest. But, we all respond differently.

You might want to get a second opinion on the level of mitral valve regurgitation as there is a level of interpretation involved. I had an echo that showed severe regurgitation but when read by another cardiologist, it was deemed moderate regurgitation. A third cardiologist thought it was severe and I did have a repair with a MitraClip. This definitely improved my symptoms and function.

Yes! A traditional Chinese medicine doctor told me that yawning was very good for me as it changed the balance in the autonomic nervous system, presumably to increase the parasympathetic response. For me this happens nearly every night when I am getting quite tired and it does relieve some of the symptoms and I feel much better after my 10 minute or so yawning session. Hope that helps.

If so, how did it affect your dysautonomia? I know that ablations are not recommended as an intervention for POTS, but for Afib, they ablate different areas. My concern with ablation for Afib is that there are autonomic ganglia in the heart and these could, intentionally, or unintentionally be ablated if they are a source of Afib. I have not been able to get an answer on this from any of the cardiologists I have asked. I have been taking antiarrythmic drugs to prevent Afib for years but recently, the one I had taken for several years caused complete heart block (very much not good!). I am taking another antiarrythmic drug now but think that it is increasing my fatigue. I'd really like to get off these drugs as they all have side-effects, but the only other reasonable treatment course is cardiac ablation. So if anyone knows anything about this, I'd really be grateful to hear about it. Thanks!

Even a tiny dose of Klonopin almost immediately relieves some of my worst symptoms. It can be hard to find a doctor who will prescribe benzodiazepines though. An integrative doctor prescribed it for me. He thought that it affected catecholamine levels.

So sorry! My electrophysiologist is seeing tachycardia in people who have had Covid and don't have a history of dysautonomia, so if you already had tachycardia, it would seem possible that Covid could aggravate it (according to my EP's experience).

Mine was done by Asperio Laboratory. They have a Facebook page but not sure whether they are still doing testing: https://www.facebook.com/asperiolabs/

That is a really good site--thanks! And right, most docs no nothing about pharmacogenomics and discount it. I haven't found that pharmacists are much more knowledgeable unless they are willing to research a drug for you. Most of the CYP2D6 problems won't be flagged in their systems. I had the list of contraindicated drugs put in my medical record at the hospital where I have had a few procedures.

This brings up something that I have found important. If you have had any genetic testing done (23 & Me or whatever) the reports should identify any compromised pathways that you have genetically. I have had pharmacogenetics testing and I am a ‘poor metabolizer’ of CYP2D6. This means that there are some drugs that go through this pathway that I should never take (they gave me a list), and there are other drugs which need to be closely monitored and given at a reduced dose due to being poorly metabolized. CYP2D6 is the main metabolizer for many drugs so I check each new prescription to see if it uses this pathway. The genetic testing I had details my expected response level to several hundred common drugs with notes on whether lower doses than usual or higher should be considered by my physicians. This recently came into play for me when Flecainide (which I had taken for years and which is metabolized primarily by CYP2D6) began to cause heart block. This just highlighted for me the importance of genetic testing.

It is really individual. We each need to find our ‘sweet spot.’ For me it is 20 - 30. When I tried 30 - 40 I could not tolerate them.