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How to live after weaning off carvedilol

Posted by sergi @sergi, 3 days ago

After being on carvedilol for 7 years in a row, I had to discontinue it because basically it did more harm than provided benefits. I did it because the cardiologist I consulted believed I didn’t need it in the first place and taking it was unnecessary. 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 had been weaning off carvedilol for 3 weeks, gradually reducing the dose. 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, and some relief is achieved by gradual hydration, 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 or that I can know how my heart works at any time. 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. So basically I have no local dialogue on the subject that would be helpful in any meaningful way. I have no contact with the cardiologist who had prescribed carvedilol in the first place because he died in 2022. Is there a way to train my system to live without carvedilol? Any natural techniques of survival? I am a very lean individual, severely underweight (probably) due to concurrent lung problem, just saying, because most probably the suggestions will be to regulate my body weight, which is unfortunately unachievable. My diet is essentially free of triggers that can cause arrhythmias, and I have been on this diet since fibrillation episodes started in 2012. Fibrillating right now! Thank you for any advice!

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sergi | @sergi | 13 hours ago
In reply to @lindy9 "side effects of carvedilol. ide Effects Allergy. chest pain, discomfort, tightness, or heaviness. dizziness, lightheadedness, or..." + (show)
@lindy9

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.

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yes, thank you, i know! i have a little of everything you mentioned except for the weight gain! I am severely underweight, i had lost all my muscles before 2017 and have had no gains since then:)

REPLY
sergi | @sergi | 13 hours ago
In reply to @jc76 "@sergi I would strongly recommend getting a second opinion regarding your diagnosis and medications. You will..." + (show)
@jc76

@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.

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yes, thank you for your support and extended explanations! i will definitely try all that and more. Now i am getting also data on the situation with my lung which probably has a lot to do with my current heart condition and I am starting to think that probably Carvedilol had been weaned off successfully and my problems are on the pneumology side and age of these problems is almost two decades! It's easy to stay under the radar in Spain and the wrong diagnostics happens not infrequently. They even ditch earlier records easily and that's in a paid insured sector!
I will find a different cardiologist too. This guy i had to deal with is a PC-illiterate brute and he won't accept the records of a third-party monitor.
Have a great week ahead and many thanks for your kind concern!

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sergi | @sergi | 13 hours ago
In reply to @kildaren96 "Sergi, The Kardia allows you to save your EKG’s (ECG’s) and email them to yourself. It..." + (show)
@kildaren96

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.

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thank you so much!
I will definitely look into it! And i will find a different cardiologist too.

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lindy9 | @lindy9 | 5 hours ago

I am so sorry what you are going through. Amazing that the doc refuses to believe you!!! I have never had tests but KNOW I have had serious heart issues in the past. And had again recently minor ones but for heaven's sakes I could feel them.

You said you have eliminated your triggers. Would you be willing to name them. And also what is normally your present diet. I am not a doctor but I do believe you, and maybe other than that med you were taking, is possibly something that has not occurred to you.

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