Every day is different, but my routin... - Atrial Fibrillati...

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Every day is different, but my routine is the same

Pikaia profile image
16 Replies

Some days my heart is solid as a rock and I don't have any palpitations, AF, or indeed anything unusual coming from my chest. Other days, I just have to look out of the window to get a strong palpitation and an irregular heartbeat. Am I just missing the triggers, or is this how it is?

I haven't been able to find any reason why some days my heart seems to be more 'jumpy' while on other days it is completely disinterested in doing anything other than what it used to do pre-AF days.

I'm on 5mg Bisoprolol and 5mg Ramipril. Could it be that some days these are not working as well?

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Pikaia profile image
Pikaia
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16 Replies
BobD profile image
BobDVolunteer

As I said elsewhere. You have AF therefore you will get AF. IF you are lucky enough to discover a trigger then great but as my EP told me. "that way madness lies."

Rubyladyemerald profile image
Rubyladyemerald

I had days like that. I could be sipping through my flat cleaning and moving stuff and just having a good day. The next day I could sit on the couch and have skipped beats palpitations or AF on and off all day long. I was on Rhytmol 325mg twice a day with Metoprolol 12.5mg a day. Now I live in the States so the medications are very different. But you could maybe ask about a beta blocker. Thats something that worked for me for seven years. But don't go on everything I say. I am a moderate to severe case. I had to have a sympathectomy to help stop my arrhythmia. But like I said I am a tough case. And most of my arrhythmia came the week befor, during and after my menstrual cycle (sorry gentleman). Its just a pattern I noticed. Please don't be afraid to ask questions no matter how taboo they are. They may find the link to this mess for both men and women.

fallingtopieces profile image
fallingtopieces in reply to Rubyladyemerald

Have you looked into taking magnesium?

I swear by it and take a hefty daily dose.

Take a look at the US site 'afibbers'.

Pat

Rubyladyemerald profile image
Rubyladyemerald in reply to fallingtopieces

I actually take 800 mg a day of magnesium and 20 mg of potassium a day. My condition is a bit more serious than that. I have a beta blocker I take and it's possible I will be put on more meds( I hope not). The sympathectomy I had was to stop adrenaline free flowing to my heart at a high rate. So far it has helped but I don't want to talk to soon about it.

seasider18 profile image
seasider18 in reply to Rubyladyemerald

How much did the sympathectomy help ?

Rubyladyemerald profile image
Rubyladyemerald in reply to seasider18

The sympathectomy helped tremendously. However I still have small issues. I moved around a lot yesterday. By the time I got my shower (with the help of my husband) last night I was so tired I think my eyes closed before I could finish my stuff. I don't remember waking up at all but my husband said I didn't four times. Today I have no energy. If I had a choice of being put in life support so I don't exert any energy I would hug that machine, give it a name and welcome it for a day.

I still have a bit of pain especially when my air conditioner is on cyrogenic freeze ( for some reason thats only in my bedroom). I do feel my heart flop about occasionally I think I only felt it twice since my surgery.

Now I'm not one to talk about things like this as if it is he miracle cure. Yes it has worked well on me. How well I can't tell you until I see my doctor next month on the 24th. If you want to do research on this by all means go for it. But I must tell you, there are not ant good studies for this surgery. I read one study said that doing the right side did Well. Then I read one that said that a Bi-latereal is the only way to get good relief. The surgeon told me that doing a Bi-latereal can kill people. I can tell you what I feel each day but it's really up to they symptoms you have and your doctor. My best suggestion to you is to be as candid (no matter how taboo you think it is) with your doctor. I hope you get well soon. I send many hugs and lots of love.

seasider18 profile image
seasider18 in reply to Rubyladyemerald

Was it the Endoscopic thoracic sympathectomy (ETS) that you had. In what ways did it help ?

Rubyladyemerald profile image
Rubyladyemerald in reply to seasider18

The surgery is only 20 minutes long. They put you in a very deep anestetic state. They lay you on your right side make three small incisions. One to collage the lung and the other two are used for the camera to find the nerve bundle and the the other device to sever the nerves. I was also intubated because I woke with a sore throat.

As of right now the most I can tell you is......I do not feel adrenaline being sent to my heart constantly. I don't have the fight or flight mode. I do still feel some atrial flutter(palpitations) here and there but only for a second or two. Now I had an AV Node Ablation before this so I will feel the atrial but as far as the ventrical goes.....I don't feel much from it unless my heart rate goes above 100. I only had that happen once. But just as soon as I stopped my activity the feeling I had went away.. No please take caution with what I'm telling you because I just had this surgery done on July 5th so I'm still healing and I still ha e odd pains or sensations.

If this is something your looking into here are a few tips for after. A heating pad because the nerves they will cut will be near your left shoulder blade. Your left upper arm will not like the cold either. I still get pain down to my elbow. Depending on the size of the chest tube they use to reinflate the lung may give you some trouble.

All in all it stopped so much of the fight or flight mode I was contantly in. I have an ICD so I won't get too many shocks I hope.

This was my last option was this surgery. Here in the States they like to either poison you first to see if that can cure you or tourcher you to the point you beg for mercy. But none of the meds worked and I would not have lasted a year with out this surgery.

seasider18 profile image
seasider18 in reply to Rubyladyemerald

I asked as there are various ways to do a sympathectomy. I don't think that I am a candidate and I turned down an AV node ablation last year though now they say the best option is cryoablation I do wish that they would make up their minds.

Poisioning is always the cheaper option.

Rubyladyemerald profile image
Rubyladyemerald in reply to seasider18

Lol poisoning was ment towards the medications. Thoses are not so cheap.

I would sit down and ask some serious questions. Like.......for an AV node ablation are they sure all the problems are in the atrium. The o The surgery I never heard of but I would still ask if it's going to stop top and bottom problems. And here in the States there is only one way to do a sympathectomy. That's to cut all the nerves on the left side to the heart.

My surgeries were at no choice. If I didn't do it I surely wouldn't be talking to you. I wish you the best of luck, hugs and much love. I hope you find relief soon too.

Jamila123 profile image
Jamila123

Hi

Have a look into gut and afib link

When my gut is bloated, wind irritated

I tend to get ectopic beats or worse afib...

Also look to see if u are lacking in vitial mi erals

Its great to research and find the triggers

Because unless you have heart disease afib is a symptom of some thing else going onand as said many a time cardiologist do not know what causes a fib in otherwise healthy patients

Its not a disease and therefore makes sense to find out what is causing the problem

Get well soon🌺

clanmags profile image
clanmags

Thanks for pointing out that it's not a disease. I was upset when I read on an NHS site that an ablation targets the diseased parts of the heart. What?

Jamila123 profile image
Jamila123 in reply to clanmags

Many people do have heart disease bypass, valves problems, heart failure etc,,,,

All these problems can cause a fib

Thats why all afib patients have a echocardiogram to look for abnormalities

Lots of questions with Afib

Every one had a theory only

With otherwise healthy pateints

I think its inflammation tht brings PAF on in a massaive scale due to acidic body , oxidative stress and then inflammation

This can occur if person has gone through chronic stress , has major gut inflammation, even athletics and pushing body too far

Lots of research from some doctors going as well into nutrients depletion within the body of afib patients

Which i think links with above 🌺

Gillyflower1965 profile image
Gillyflower1965 in reply to Jamila123

Tell me more, I have had an ablation and been well on meds for a long time.

I had a gut infection and the AF /ectopics are back so I get get very anxious and go into fight and flight mode , feel bucket loads of adrenaline which then cause me to have an upset stomach. The more I go to the loo the worse the heart is. I take 250 mg magnesium a day which helped a bit . Though I think I may need more.

THe stress and anxiety feelings are the worst bit. It stops me sleeping and is much worse at night. I have got some CBT coming up to help me deal with these feelings. Any bright ideas gratefully received The breathing excel isles help as does keeping busy why are the gut and Herat connected?

needlestone profile image
needlestone

I was able to control erratic heartbeats by going gluten free, no aspartame or sucralose and no caffeine. Even when I chewed a piece of gum one time that had aspartame my heart was crazy for a whole day. And when I ate some gluten after being gluten free for 6 months, I ended up with my heart being crazy for 5 days. Look at what you are eating. Small amounts of caffeine will even affect my heart. My cardiologist was so pleased at my last yearly check up because I found the triggers and was living normally. She said the detox definitely helped and she was so relieved because she didn't know where else to go with me since I could not tolerate the side effects of flecainide and metropolol plus I don't want to take meds if I can figure out the cause to begin with. It took a naturopathic doctor to suggest the gluten connection and she was correct. The others I figured out on my own. We ingest a lot of poison in the foods we eat and some of us just can't tolerate it and don't detox it well.

Rubyladyemerald profile image
Rubyladyemerald in reply to needlestone

There are so many different triggers its very had to pin point it. My trigger was the time of the month. I would have serious afib, fatigue, aggravation, headaches and just plain cranky. When by body built up enough of whatever days to hours I would end up in the hospital. And I made sure to pack feminine products.

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