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No drugs permanent AF

Hardjuice profile image
9 Replies

its now one week without drugs

I've relied on them for two years now so it's a little concerning

My EP told me to record heart rate and blood pressure for six weeks and Email the results

He said he could take two weeks for Diltiazem to clear my system

Prior to coming off meds EP was happy my HR was between 80/100 bpm

I have noticed a smell when I sweat

( no it's no BO) I guess that's the drug coming through

No more sweet corn like capsules in my stools either

I think I'm more calm but not sure if I'm imagining that one lol

My heart rate varies between 75 / 109

I got on a cross trainer the other night it went straight to 140 so I got off

I went for a small walk and cut the grass then checked my HR it went down to 65 bpm

So early days ,how do I feel ?

Same as before , tired now and then , bit strange after food , but a little tight chested breathing wise

I supplement with cq10 and a multivitamin

My legs are no where near as bad but not normal

II keep reporting in if that's ok

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Hardjuice profile image
Hardjuice
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9 Replies
rosyG profile image
rosyG

all sounds good!

Japaholic profile image
Japaholic

Very ok, keep the reports coming

EngMac profile image
EngMac

Is your heart rate determined with a device? If in AF, blood pressure devices often record heart rate incorrectly; but some will indicate the heart is not beating normally. Some people use the Alivecor device. I use another that shows me the waveform so I know exactly what the heart is doing. Now that you are off drugs, it is a good time to pay attention to the impact of what you eat. I need to avoid artificial sugars, sulfites, and nitrites. I can also only tolerate very small amounts of natural sugars. Exercise seems to help keep my heart in line. When I went off AF drugs, it took about 6 weeks before my heart stabilized and I felt a lot better than when on drugs. I take a bunch of supplements now and maybe they help. I don't take drugs for any health issues. I tried magnesium orotate but it causes heart stress for me. I do take other magnesium types however. With awareness and effort, you may be able to avoid drugs for a short time or a long time. Good luck!!

Hardjuice profile image
Hardjuice in reply to EngMac

I use a blood pressur monitor that shows my heart in AF and gives HR

Also an app on my iPhone

Both not perfect but a reasonable indication I guess

EngMac profile image
EngMac

I think both can be suspect. Maybe others will comment on the accuracy. My phone one does not give me the correct reading but I have an android phone so it could be a different app. And the blood pressure machine that I have shows AF but the heart rate is incorrect. You may want to purchase the iHeart device that I have. It costs much less money than the Alivecore one. Message me if you want the specifics.

Diltiazem can make some types of Af worse. I believe it did for me. On one of my earliest posts on this forum, I referenced a study done in Europe that stated this can happen.

Jill13 profile image
Jill13

How were you able to go off drugs? Did you have an ablation?

Good luck Sounds like a big improvement for you.

Hardjuice profile image
Hardjuice in reply to Jill13

my symptoms of AF went un noticed until my heart raced to upwards of 160 bpm

At that point I was put on digoxin diltizm warfarin perindpril and a water tablet after hospital admission

Had a cardio version some months later

Went back into normal rythmn for 4 days with one shock of 150 Jules

Then saw cardio doc who said

Sorry we couldn't help you

Stay on the drugs any issues see your own doctor

I then looked into AF myself and after some time went to see an EP

Who took me straight off digoxin and diltizem put me on drnadrone

Left me on warfarin

Some timec later I had a cardio version 2 shocks @100 Jules 1 @ 150 Jules

Back into normal rhythm

Lasted 4 days or so

Went back to see EP

He discussed ablation how I may not feel much better than I do now and it may take several attempts to get me right

He said stay on ditizem and see you in 6 months and see how you go

No warfarin

Went back and discussed a pace and ablate warfarin etc

Complained about ditizem and swollen legs

But he said lets see how you are in 6 months

Went back talked again about anticoagultes pace and ablate diltizem

Usual how I feel etc

Took me off diltizem

I have to record my BP and HR and send in results

Feel about the same iffy now and then

But less irritable

Not sure how I should think not having any drug protection

But going with it and I know it's still there feel no differant but no drugs giving me unwanted side effects

Time will tell I guess

Jill13 profile image
Jill13

Thanks, a long process for you. Hope things improve without the drugs.

Hardjuice profile image
Hardjuice

Update

Been on Diltiazem 200 and 62.5 Digoxin came off diltiazem for a week and swollen legs went down

Spoke to rythm nurse about it so off drugs for a couple days again

Getting a heart monitor fitted today for 24 hours I had one a year or so back but EP couldn’t find the info when he needed it hopefully see what my heart is doing off drugs

My legs this time don’t seem to have reduced much

AF is noticeable but easy to put up with and not much changes on of off drugs

But heart rate may be playing silly buggers

Hopefully find out soon

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