It feels so bad

[sweetiepye]

I've posted this question before and never got a direct answer. I know about staying strong etc. Not trying to be mean, just desperate.. I have Afib, had an ablation 6 yrs ago and I haven't gone into afib since then. I do have the symptoms that I use to have before I went into afib ,but my heartbeat remains regular. The symptoms are extremely tired, feel like my body is shutting down, feel disoriented , breathing is an effort,It can last for several hrs. and then I sleep the rest of the day. Does anyone else recognize this? It scares me and it's wreckiing my life/

[BobD Volunteer]

Yes sure. Do what you can when you can and accept your limitations. There are worse things to have. You are alive so enjoy it while you can. What drugs are you on as these symptoms sound more drug relate? I have not been on any drugs for my AF since my last successful ablation but many people do remain in drugs.

[sweetiepye in reply to BobD]

This was happening to me before I took any med. I am also Diabetic so that could play into it, but it feels afibbish to me. Thanks, Pam

[cyrilbarnes]

Hi just2peachy, this sounds all too familiar to me. I developed AF about 4 years ago, after collapsing with an SCA 2 years previously and being diagnosed as having Brugada Syndrome. I have an ICD to protect me from SCA’s but the AF seems to have a mind of its own. Yes, when I’m in AF I get very tired, often can’t work, find it a great effort to do anything, and like you have to sleep. I also get days when I feel exhausted doing nothing although my pulse is like clockwork and my blood pressure is normal. I’ve got no explanation for it but I just accept it and go back to bed if I can’t cope. Not much help to you I know, but I thought I’d just let you know that you are not alone in this.

[sweetiepye in reply to cyrilbarnes]

That helps a great deal. My Doctors don;t recognize it so I feel like I'm nuts. Thank you so much Cyril. I do feel less alone now. Pam

[A_Young_Fibber]

I have similar symptoms and lately I think I have found mine is due to very bad acid reflux. Not sure if you've ever dealt with that but that could be a possibility.

[sweetiepye in reply to A_Young_Fibber]

Yes, I think so, but how does that work?

[A_Young_Fibber in reply to sweetiepye]

I was experiencing these exact symptoms - extreme fatigue, heart palps, no energy, etc. - and I figured out it was due to acid reflux. So I've been taking Prilosec every morning for the past few weeks and have noticed a world of difference.

[Hidden]

I wonder if you are deficient in something. Maybe some blood tests would show up something? I found out lately I have high potassium and my sugar levels were a bit high, nothing to do with all the chocolate I eat obviously 😀

[jeanjeannie50 in reply to Hidden]

Tut,tut! It's not fair if you're eating chocolate we all want some!

[Elaine1951]

Less food and less alcohol def helps me

[sweetiepye in reply to Elaine1951]

Good to know. Thank you

[Buffafly]

Yes, when I have an asthma attack! Except now I have effective medication I stop it in its tracks. Probably mad thought but several people seemed to have had breathing problems after an ablation, I certainly did, and when you think about where the burns are you can see how there could be some permanent irritation of the lungs. Not everyone has wheezing during an asthma attack, in fact it is worse if you don't wheeze.

Maybe this something that has already been checked out but as has been said before just because AF is the condition you know about does not mean it is the only one you have.

[Buffafly in reply to Buffafly]

PS Reflux and asthma/lung problems can be connected.

[sweetiepye in reply to Buffafly]

I didn't know that. Thank you

[Kodaska]

Your situation is all too familiar to me. I had an ablation in May of last year and immediately experienced a number of odd symptoms: dizziness, fatigue, paresthesia (peripheral neuropathy), dry mouth, mild rashes, bleary eyes, and a few other minor things. My doctor said, "There's no name for what you have so we don't know how to treat it." Thanks for the diagnostic support, doc.

Symptoms start an hour or so after I get up in the morning and subside some time later. Intensity, duration, and frequency during the day are completely random. I can have 12 hours of high-level symptoms out of a total of 14 hours (i.e., all day). Or I can have 15 minutes of mild disequilibrium. The usual day is somewhere between these two extremes. Often, my eyes get so heavy I start to nod off but snap out of it (presyncope). On really bad days I can't keep from nodding off and I pass out (frank syncope).

After extensive research I learned about mast cell activation. For the past couple of months I've been taking a mast cell stabilizer (quercetin with bromelain) and a couple of antihistamines (loratadine and ranitidine). If you read up on mast cells you'll learn about the role of histamine and why you need both antihistamines.

If you're interested in this, here are a couple of web sites to get you started:

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options:

ncbi.nlm.nih.gov/pmc/articl...

Mast cell activation syndrome:

en.wikipedia.org/wiki/Mast_...

Mast cells and histamine:

link.springer.com/chapter/1...

21st-Century Mast Cell Stabilizers:

ncbi.nlm.nih.gov/pmc/articl...

[sweetiepye in reply to Kodaska]

Thank you for the information. I will certainly look into it.

[Deadwoodmike]

I know just what those symptoms are like when I'm in Afib. But as soon as I go back to nsr I feel normal very quickly. I don't have an answer for these symptoms without being in Afib. There has to be a logical explanation. I would demand an answer from my cardiologist. If he or she can't come up with an answer and possibly solution, I would find a doctor who will. It's pisses me off knowing what you're going through and not having someone to dig deep enough to find out why. Please don't give up, and I wish you the best of luck. Sincerely, Deadwoodmike.😎

[sweetiepye in reply to Deadwoodmike]

Thank you for the reply. It pisses me off too. My Cardiologist says it is not Afib. The symptoms are exactly the same. I think I'm going to have to find out myself or like you said find another Cardio. Pam

[PeterWh in reply to Deadwoodmike]

I've learnt that with AF there are sometimes reasons but equally there can be no logic or pattern around some events, situations, etc.