How to live after weaning off carvedilol

Sorry for all this. We seem to go months in good control, we learn to relax a bit, and then another change is imposed on us and we commence the journey of disruption and arrhythmia all over again. It's frustrating.

I can only guess, but is sounds like your issue is a loss of tone of the Vagus nerve.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7533130/
As inexpert as I am, and please bear this in mind as you read, I think you should see an electrophysiologist (EP) and get an assessment. They perform catheter ablations and can isolate places in your heart where extra beat signals enter the lining of the four pumps and cause them to contract out of sequence...out of rhythm.

I was most symptomatic during the day when my mind was active, or when I bent over to tie my shoes when I was heavy with visceral fat. Or, some find alcohol, red wine, caffeine, some medications, even worry over anything that presents a problem in life...they can all bring on arrhythmias. So can low systemic magnesium levels, a chronic condition in the western world. On the other hand, my sister-in-law has all her arrhythmia at night when she climbs into bed and tries to fall asleep. Puzzling, but I'm so thankful not to be affected that way.

Please see a good cardiologist for a formal assessment, or have that person refer you to an EP.

Thank you for the reply, the link and your sincere concern! Yes, I am aware that I need to find a good cardiologist, even a normal one would do for me. One who would not see me as an impostor wasting his precious time, but meeting such doctors is not very common in Spain, even in the private health sector. As soon as I get better, if that ever happens, I will continue my attempts. Thank you again, and have a lovely weekend!

Have you heard of " Kardia" monitors? My primary provider used one and showed me and i purchased one online. Pretty reasonably priced also. It allows you ability to check your rhythm but also ability to record it, how your feeling , opportunity to connect to provider or they have providers you can connect with. Please at least check it out, it may be exactly what you need. Be blessed

Yes, i think i saw them on amazon. Thank you for reminding me! Have a great day!

@sergi
I would strongly recommend getting a second opinion regarding your diagnosis and medications. You will see us on MCC always suggesting second opinions on things like this. It comes from personal experiences of dealing what you are dealing and then getting second opinions from experienced medical professionals.

The carvedilol you mentioned is a medication to help with heart arrhythmias, palapations, PVCs, tacacardia. This comes from my Mayo Heart Failure doctor and EP. When you came off carvididol your symptoms got worse is that correct?

Consider getting a second opinion. Do you live anywhere close to a Mayo Clinic, Cleveland Clinic, John Hopkins, etc. ?

Ask your cardiologist about magnesium. My EP recommended that to me for PVCs. I think it help some. But what really helped was my EP put me on an additional medication to help with PVCs, tacacardia, and it really helped. The only down fall is that is must be taken every 8 hours. It has a very low toxicity and leaves body fairly quickly thus the every 8 hours. I had asked for an ablation but since my electrical problem was coming from 3 different areas in LV wanted to try it.

We are all different and what one medicaion works for our case may not work for you. My HF, EP, emphasize that stress and anxiety will cause more PVCs, palabatations, etc. It is important to address your stress and anxiety as well. This can be consulations and of course medicaion if deemed necessary. I do a lot of exercise (doctor approved and hobbies).

It is important thus to have a cardiologist you trust, is experienced with not just cardilogy but electrical functions of heart. That is why you will see a lot of us on MCC suggest seeing a Electrophysiologist (EP). They are experts in the elecrtricl function of heart which affect, PVCs, PACs, palapatations, heart arrymthmias, etc.

Sergi,
The Kardia allows you to save your EKG’s (ECG’s) and email them to yourself. It creates a pdf file that you can print out. So you can record your fibrillations, print them out and take them to your doctor as proof that your heart does go out of rhythm at times. The date and time is recorded.

side effects of carvedilol.
ide Effects
Allergy.
chest pain, discomfort, tightness, or heaviness.
dizziness, lightheadedness, or fainting.
generalized swelling or swelling of the feet, ankles, or lower legs.
pain.
slow heartbeat.
trouble breathing.
weight gain.

You said Actually the guy believes i don't even have arrhythmias but in fact I had several adverse reactions attributable to carvedilol at the time. I reached the zero dose about two weeks ago. Since then, I have had serious problems keeping tachycardias at bay, some of which now and again lead to fibrillation. I feel particularly vulnerable after sleeping, if at all. Any movement causes sudden acceleration of the heart, a but the very act of drinking causes palpitations and rhythm disturbances. As I said, the cardiologist I am dealing with now is of no help because he doesn't seem to believe that I have arrhythmias at all. The tests he has carried out and/or ordered have not confirmed my condition as I claim, because my heart works like a good watch whenever it is under observation."
If your problems are as bad as they sound then a monitor for 2-4 weeks should prove your claims. Has his tests included long term use of a holter monitor? This seems like the perfect test to prove your claims. But I would also bump those who have said get a Kardia monitor so you can create a file with the events you record on the device. All are stored in you smart phone assuming you have one. And assuming you can buy one in Spain.

yes, i think buying a Kardia monitor is an expensive one-time endeavor, i won't do it. The specific cardiologist i mentioned is an ancient brute who even cannot use PC. I don't feel the need to prove anything to him. It's just he was the first in a row whom i selected when looked for an appointment and this is a lottery in Spain. He would definitely not approve of the use of any third-party device especially, i guess monitors with less derivations than Holter monitor has. A normal clinical grade Holter is available on Amazon but even if i buy to use and return it to Amazon i would need 600eur which i don't currently have (existential crisis doesn't happen in the sphere of health alone). I know monitoring for weeks is possible, but i can't live with the electrodes on my skin, i develop urticaria and can’t gen any sleep even with 24h monitoring (I develop insomnias even on more innocuous occasions, once I had insomnia for 1.5 year during army service). So anyway the first thing to do is to ditch the cardiologist and find a different one. Of course I can trigger a fibrillation during 24h monitoring. The irony of the situation is that i tried it, but it worked only next day, just after it was removed, and worked fabulously, i hardly managed to survive.
Starting a subject here was more like an act of desperation. But i am taking an antiarrhythmic which gradually takes the edge out of my condition, hope i will adapt. Also I am exploring other venues and I got some interesting data with the pneumologist who seems to be a great guy, which helps better understand the cardiac situation. Later I will consult a different cardiologist. Thank you for your concern and have a great week ahead.

thank you! i appreciate you concern! i will look into it. There's a lot going on now i am starting to better understand my situation! have a great week ahead!