Sushi

On 6/15/2022 at 11:59 AM, MikeO said:

Well just sharing what a ILR removal looks like two days later.

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!

6 hours ago, RecipeForDisaster said:

had a run of V-tach on my last monitor as well as increasing PVCs, bigeminy, etc. They weren’t even worried about that! Acebutolol did help with the PVCs, or at least the feeling. 

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. 

2 hours ago, JennKay said:

did see that thread and was wondering if that was applicable to my situation. I will ask my EP about it at our appointment Monday. I would love it if this is true and would correct things. If I remember correctly, you had been using flecainide for Afib, right? And, your post said you had to stop b/c you developed heart block. You have been a show that your Afib is not sympathetic-driven? And if so, how did you do this? I am beginning to think that my adrenaline symptoms are a reaction to the over activity of my vagus nerve, that is the only way my body can correct itself.

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!

18 minutes ago, JennKay said:

I've been offered flecainide too, but I really don't want to go in that direction for the reasons you listed. I'm secretly hoping this is something that can be ablated. An ablation scares the crap out of me, but if it would be curative, then I would do it.

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. 

On 5/27/2022 at 5:54 PM, RecipeForDisaster said:

I was offered flecainide and an ablation, but I was cautious. 

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.

5 hours ago, jajb said:

I am working towards this procedure. I will need another round of testing before getting approved  Here is another link that may be interesting. https://www.today.com/health/health/woman-details-faint-daily-basis-rcna11902

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. 

On 6/4/2022 at 12:13 PM, jajb said:

My doctor is onboard but I would need to travel for the surgery.

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! 

22 hours ago, jajb said:

I have been reading about the newcardioablation and wonder if anyone has experience with the surgery. My doctor is onboard but I would need to travel for the surgery.  I have pre-syncopal and syncopal events daily.

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.

On 5/31/2022 at 6:34 PM, MikeO said:

later in the day a storm came thru and there was a lightning strike 40 feet away from me. I am just thankful i did not get hurt. I did feel the energy before the strike but oddly Monday i felt better and today my GI issues subsided again and felt good and vitals are on track. Even cut the lawn.

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.

On 5/1/2022 at 2:22 PM, Picklesquish said:

My EP did not recommend ablation as he feels the afib is caused by the autonomic dysfunction. I was having afib attacks every week until I finally found a dysautonomia cardiologist who started me in Cozaar and Clonidine. I’ve been afib free for six months since then.

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.

On 4/13/2022 at 4:29 AM, Pistol said:

@Sushi -what I understand is that ablation is not useful for POTS and will not improve the symptoms. But you would be getting the ablation for afib, not for POTS, and it is absolutely proper for this. I am not aware that an ablation for afib would affect your dysautonomia. 

This is just my own opinion but considering the potential dangerous complications from afib I would seriously consider an ablation if the cardiologists recommend it. Afib can kill you, POTS cannot.

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! 

5 hours ago, Stacey615 said:

We are considering moving to FL (gulf side) but im worried about humidity and such.

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.

6 hours ago, redpenny11 said:

Echo showed moderate mitral valve regurgitation

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. 

12 hours ago, Mikayla said:

am interested if anyone has any info or experience to share about yawns? 

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!

3 hours ago, CallieAndToby said:

I've had good experiences with Xanax and Klonopin

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. 

6 hours ago, angelloz said:

I have been doing pretty well for several years with low BP and tachycardia. Suddenly the past two weeks have been back to the way I was years ago. What happened? I am now 63 years old. In the experience of all of you which is most likely. 

1. Even though fully vaccinated I had Covid in early February. Could this be a delayed reaction?

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).

11 hours ago, MikeO said:

I did find one more good resource to look up drugs. https://clinicalgenome.org/

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/

3 hours ago, MikeO said:

One more good data source.

https://www.pharmgkb.org/

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. 

On 3/3/2022 at 7:46 AM, MikeO said:

One of the warnings is with Carvedilol (Ranolazine will increase the level or affect of Carvedilol by affecting the hepatic enzyme CYP2D6 metabolism) so does this mean it will make the effect of the drug stronger? How would i know if i am affected or is there a test to monitor?

This also has me a bit concerned with one of my statins (Rosuvastatin) as it is noted it can increase the toxicity.

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.

4 hours ago, Sati said:

I'm currently wearing 20-30mmHg thigh high or waist high stockings and it doesn't really bother me. I'd like to try the stronger compression later this year to see if there would be any improvement. I expect it will be more difficult to put on/off, but is it also bothersome while wearing it? Is there a big difference? What is your experience?

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.