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Scarlett

My AFib

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Sigh.  I was diagnosed 2 years ago......I have been able to control it by limiting my trigger which was cold drinks.  But for several weeks it has been really wonky.  Like sitting here typing it is 90. It can jump up to 110 with no change in my movement. I don know how accurate my Fitbit is but on a day where I was sitting the entire day ( at a Convention) it shows I was in the ‘fat burn’ range for 8 hours and 20 mins. Yesterday where I did very light housekeeping...laundry and such I spent 15 hours in the fat burn .

New part is that it happens so often and I can’t identify the trigger...and it is now also very irregular.  Like beat, beat, beat, beat......beat——beat——beat.

i called 10 days ago and got an appointment for August 25.  But I called this morning and they had a cancellation and will see me this Thursday. 

I wish I knew what to expect.  I think I will have to go on meds.....but I don’t want them.....and my cousin spent 5 months in and out of the hospital trying to get meds to work....none did.  He had to have two ablutions and the second one did the trick.

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Sorry you're going through this. The cardiologists I know say that a-fib is a tricky little bastard. Meds work great for some people, so don't knock them just yet. Good luck. 

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I elected to do the ablation rather than meds for my afib. I couldn’t see being on meds for the rest of my life and I figured I’d eventually need the ablation so might as well do it while I was young. It worked and I’m glad I did it. 

I still do get occasional premature beats (like the skipping you are describing). Mostly connected with food triggers (alcohol is my biggie). 

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3 hours ago, Scarlett said:

I think I will have to go on meds.....but I don’t want them.....

You most certainly will have to go on blood thinners if you aren't already taking them.

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1 hour ago, EKS said:

You most certainly will have to go on blood thinners if you aren't already taking them.

That isn’t the meds he suggested two years ago.  

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1 hour ago, sassenach said:

I elected to do the ablation rather than meds for my afib. I couldn’t see being on meds for the rest of my life and I figured I’d eventually need the ablation so might as well do it while I was young. It worked and I’m glad I did it. 

I still do get occasional premature beats (like the skipping you are describing). Mostly connected with food triggers (alcohol is my biggie). 

Yes I fear I am going to have to give up wine.  It seems to be a trigger. On the cold drink trigger though....do you know how hard it is to avoid cold drinks?  In restaurants even if I ask for no ice it is still too cold.  I try to take my own water in with me but not always possible.  

I too would much prefer the ablation.  I can’t remember the drugs he mentioned....beta blockers? Something like that. 

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If you are pretty continuously in AFib you need to be on blood thinners to reduce the risk of stroke.

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3 minutes ago, TCB said:

If you are pretty continuously in AFib you need to be on blood thinners to reduce the risk of stroke.

Well, yes.  Other drugs sometimes can stop the AFib from happening.  And the ablation can too. 

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1 hour ago, sassenach said:

I elected to do the ablation rather than meds for my afib. I couldn’t see being on meds for the rest of my life and I figured I’d eventually need the ablation so might as well do it while I was young. It worked and I’m glad I did it. 

I still do get occasional premature beats (like the skipping you are describing). Mostly connected with food triggers (alcohol is my biggie). 

Does stress trigger you?

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1 minute ago, Scarlett said:

Well, yes.  Other drugs sometimes can stop the AFib from happening.  And the ablation can too. 

Good, glad you're on blood thinners! I sort of thought from what you said that you might not be. Usually they use beta blockers and calcium channel blockers to slow your rate and sometimes slowing it down allows you to convert to normal sinus rhythm. Another med they use is Amiodarone which is an anti-arrhythmic medication to try and convert you to normal rhythm.

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For those of you who had the ablation what kind of heart rate did you have?  Mine doesn’t go over 120 usually....my cousin was at 225 for 2 hours and finally went to the hospital.  He was in and out of the hospital for 5 months while they tried every drug option.  It took a second ablation before he was fixed.  

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1 minute ago, TCB said:

Good, glad you're on blood thinners! I sort of thought from what you said that you might not be. Usually they use beta blockers and calcium channel blockers to slow your rate and sometimes slowing it down allows you to convert to normal sinus rhythm. Another med they use is Amiodarone which is an anti-arrhythmic medication to try and convert you to normal rhythm.

No, no I am not on blood thinners.  I was just saying that yes I would need to be if they can’t get this under control any other way.  

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If you are in AFib that much you should be on blood thinners now. If it is SVT then you don't need to be, but in AFib it is essential to lessen the risk of stroke.

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1 minute ago, TCB said:

If you are in AFib that much you should be on blood thinners now. If it is SVT then you don't need to be, but in AFib it is essential to lessen the risk of stroke.

Well I am going to the electrophysiologist Thursday morning.  

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42 minutes ago, Scarlett said:

Does stress trigger you?

Not really. Lack of sleep and alcohol are my 2 biggies. 

40 minutes ago, Scarlett said:

For those of you who had the ablation what kind of heart rate did you have?  Mine doesn’t go over 120 usually....my cousin was at 225 for 2 hours and finally went to the hospital.  He was in and out of the hospital for 5 months while they tried every drug option.  It took a second ablation before he was fixed.  

Way over 120. I can’t remember but it was close to 200. And everything in between. 

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1 hour ago, Scarlett said:

  I too would much prefer the ablation.  I can’t remember the drugs he mentioned....beta blockers? Something like that. 

I've been taking beta blockers for 16 years.  No side effects that I can detect.

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1 hour ago, Scarlett said:

No, no I am not on blood thinners.  I was just saying that yes I would need to be if they can’t get this under control any other way.  

I'm kind of stunned that your doctor didn't at least have you take a baby aspirin every day.

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2 hours ago, EKS said:

I'm kind of stunned that your doctor didn't at least have you take a baby aspirin every day.

I think he did tell me to.  But at some point I got concerned I shouldn’t be taking it and meloxicam. Plus my symptoms were under control.  Until recently. 

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Look into magnesium supplements.

Do you drink any caffeine? Dark chocolate? If so I would cut all caffeine out and see if it goes away.

Here are some natural ways to stop an episode that you might want to ask your doctor about:

 

https://www.webmd.com/heart-disease/atrial-fibrillation/how-stop-afib-episode

 

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7 hours ago, lovelearnandlive said:

Look into magnesium supplements.

Do you drink any caffeine? Dark chocolate? If so I would cut all caffeine out and see if it goes away.

Here are some natural ways to stop an episode that you might want to ask your doctor about:

 

https://www.webmd.com/heart-disease/atrial-fibrillation/how-stop-afib-episode

 

Thank you. My primary care doctor actually told me about several of those tips.  

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I have been on beta blockers for at least ten years for hbp. No side effects. 

And I have an unusual rhythm ( like long Q T- but not quite). The electrocardiologist who saw me said beta blockers were the only thing I needed, because "not normal- but not too bad." I do have flutters sometimes- but can't figure out any triggers.

He called beta blockers, "zen in a bottle." 

 

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3 hours ago, MysteryJen said:

I have been on beta blockers for at least ten years for hbp. No side effects. 

And I have an unusual rhythm ( like long Q T- but not quite). The electrocardiologist who saw me said beta blockers were the only thing I needed, because "not normal- but not too bad." I do have flutters sometimes- but can't figure out any triggers.

He called beta blockers, "zen in a bottle." 

 

I am glad to hear several of you guys say you have had no side affects.  The list of possible side affects did not sound good.  

Are they expensive?  Like my dh's blood thinner is over $400 a month.

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The expense depends on the blood thinner. Aspirin is just OTC. Coumadin/Warfarin (not a blood thinner, per se; it's an anticoagulant) is among the cheaper of the anticoagulants because it's been around for quite a while. Plavix and Brilinta are anti-platelet drugs and are generally prescribed after a heart attack, though Plavix is sometimes prescribed as a more general anti-platelet drug to prevent strokes. Plavix is usually cheaper than Brilinta due to how long it (Plavix) has been on the market. Eliquis is an anticoagulant prescribed for people in a-fib. It's more expensive as it's quite new. There are often manufacturer's coupons for most of these drugs. 

Beta-blockers are used to control rate. They're not anticoagulants or blood thinners. Many beta-blockers are fairly inexpensive because they're older drugs. 

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1 minute ago, brehon said:

The expense depends on the blood thinner. Aspirin is just OTC. Coumadin/Warfarin (not a blood thinner, per se; it's an anticoagulant) is among the cheaper of the anticoagulants because it's been around for quite a while. Plavix and Brilinta are anti-platelet drugs and are generally prescribed after a heart attack, though Plavix is sometimes prescribed as a more general anti-platelet drug to prevent strokes. Plavix is usually cheaper than Brilinta due to how long it (Plavix) has been on the market. Eliquis is an anticoagulant prescribed for people in a-fib. It's more expensive as it's quite new. There are often manufacturer's coupons for most of these drugs. 

Beta-blockers are used to control rate. They're not anticoagulants or blood thinners. Many beta-blockers are fairly inexpensive because they're older drugs. 

He has never mentioned blood thinners except for a baby aspirin....he only mentioned beta blockers.

 

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4 minutes ago, MysteryJen said:

I get mine (labetalol) for about $50 for a three month supply.

That is awesome!  Thank you!

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1 minute ago, Scarlett said:

He has never mentioned blood thinners except for a baby aspirin....he only mentioned beta blockers.

 

Hmmm...most people I know who have a-fib are on both a blood thinner or anticoagulant and a beta blocker and/or calcium channel blocker. However, their intrinsic rates may be much faster than yours. 

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10 minutes ago, brehon said:

Hmmm...most people I know who have a-fib are on both a blood thinner or anticoagulant and a beta blocker and/or calcium channel blocker. However, their intrinsic rates may be much faster than yours. 

And if I understand correctly there are different types of AFib.

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On 7/16/2019 at 11:54 AM, Scarlett said:

And if I understand correctly there are different types of AFib.

There is Atrial Flutter as well as Atrial Fibrillation and they can happen at different rates. The reason people in A Fib need to be on anticoagulants is that the atrial chambers of their hearts are not beating uniformly and so it's possible for clots to form as the atria are not being emptied of blood efficiently when the heart beats and the clots can travel to other places like the brain. In my experience, anyone not just transiently in A Fib also gets put on anticoags and not just meds to slow the rate down like beta blockers. Other fast rhythms like SVT don't usually need anticoags because the atria are emptying properly.

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Just got home from my appointment.  He put a 30 day monitor on me.  He also prescribed very low dose meds ( can't recall the name, I will come back and up date when I pick it up).  He he highly doubts it will work and then there is a progression that begins that usually ends up with ablation.  And for now absolutely no blood thinner.  I am extrembly low risk for stroke and the blood thinners come with risks too.  He said if they get this under control, either with meds or ablation I won't need blood thinners for many years yet.  

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Diltiazem.  30 mg twice daily.  That is a very low dose.

This monitor is going to get on my last nerve.  29 days to go.  🙂

I ordered a case for the phone monitor that has a clip on it so I can hook it to my jeans.  That will help.  It is suppose to  be here Monday.

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21 hours ago, Scarlett said:

Just got home from my appointment.  He put a 30 day monitor on me.  He also prescribed very low dose meds ( can't recall the name, I will come back and up date when I pick it up).  He he highly doubts it will work and then there is a progression that begins that usually ends up with ablation.  And for now absolutely no blood thinner.  I am extrembly low risk for stroke and the blood thinners come with risks too.  He said if they get this under control, either with meds or ablation I won't need blood thinners for many years yet.  

I am astounded that he didn't at least put you on aspirin.  Have you ever actually been in AFib when at the doctor's office?  Or are they just going on your description?

 

7 minutes ago, Scarlett said:

This monitor is going to get on my last nerve.  29 days to go.  🙂

Is it a Holter monitor with all the wires?  Or just the patch?  Or something else?  I definitely wouldn't want a Holter monitor for 30 days!

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9 minutes ago, EKS said:

I am astounded that he didn't at least put you on aspirin.  Have you ever actually been in AFib when at the doctor's office?  Or are they just going on your description?

 

Is it a Holter monitor with all the wires?  Or just the patch?  Or something else?  I definitely wouldn't want a Holter monitor for 30 days!

He explained at length why I am not going to be on blood thinners right now.  And since I am already on Meloxicam there is risk to my kidneys to add  more Nsaids.  

This is the monitor I have.  Not a Holter.  https://www.myheartmonitor.com/device/mcot-patch/

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14 minutes ago, EKS said:

I am astounded that he didn't at least put you on aspirin.  Have you ever actually been in AFib when at the doctor's office?  Or are they just going on your description?

 

 

The Holter monitor I had on 2 years ago captured about 3 events in 24 hours so he knows there is a real issue.  

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On 7/15/2019 at 2:11 PM, brehon said:

Sorry you're going through this. The cardiologists I know say that a-fib is a tricky little bastard. Meds work great for some people, so don't knock them just yet. Good luck. 

When he was explaining all the options and  likely path this will lead down, I thought of your post.  🙂 It is pretty much what he was saying.

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1 hour ago, Scarlett said:

He explained at length why I am not going to be on blood thinners right now.  And since I am already on Meloxicam there is risk to my kidneys to add  more Nsaids.  

Makes sense.  And Meloxicam is itself a blood thinner.

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I have been taking this channel blocker for a week now.  My blood pressure is 81/66 just now.  How low is concerning?  I don't want to call the doctor if it isn't necessary.  I feel tired, but not dizzy....

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In my world, anything below 90 systolic is concerning, assuming your normal BP is between 100-120 systolic. 

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On 7/16/2019 at 11:37 AM, brehon said:

The expense depends on the blood thinner. Aspirin is just OTC. Coumadin/Warfarin (not a blood thinner, per se; it's an anticoagulant) is among the cheaper of the anticoagulants because it's been around for quite a while. Plavix and Brilinta are anti-platelet drugs and are generally prescribed after a heart attack, though Plavix is sometimes prescribed as a more general anti-platelet drug to prevent strokes. Plavix is usually cheaper than Brilinta due to how long it (Plavix) has been on the market. Eliquis is an anticoagulant prescribed for people in a-fib. It's more expensive as it's quite new. There are often manufacturer's coupons for most of these drugs. 

Beta-blockers are used to control rate. They're not anticoagulants or blood thinners. Many beta-blockers are fairly inexpensive because they're older drugs. 

YES.  I do not have AFIB but need to be on blood thinners as Brehon said actually anti coagulant) so I am on Jantoven/Coumadin/Warfarin.   I have to go in frequently with that medication but if your doctor lets you, you can get a home machine and just call in the results and get instructions on how much to take.  Anyway, since I have been go to the Coumadin Clinic between every week to every 3 weeks (and others can do monthly visits), I talk with the CRNPs while the testing and waiting for computers and they are typing.  Originally when I went on Coumadin, only one alternative was available.  Others have been introduced= not only are they more expensive, but not all of them have a way to restore coagulation which means if you have a hemorrhagic stroke or some other serious bleeding, doctors would have a hard time keeping you alive.

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26 minutes ago, TravelingChris said:

YES.  I do not have AFIB but need to be on blood thinners as Brehon said actually anti coagulant) so I am on Jantoven/Coumadin/Warfarin.   I have to go in frequently with that medication but if your doctor lets you, you can get a home machine and just call in the results and get instructions on how much to take.  Anyway, since I have been go to the Coumadin Clinic between every week to every 3 weeks (and others can do monthly visits), I talk with the CRNPs while the testing and waiting for computers and they are typing.  Originally when I went on Coumadin, only one alternative was available.  Others have been introduced= not only are they more expensive, but not all of them have a way to restore coagulation which means if you have a hemorrhagic stroke or some other serious bleeding, doctors would have a hard time keeping you alive.

Pradaxa has the reversal available BUT our doctor says very few hospitals have it on hand so what is the point of it existing.  Weird.  He told us we should talk to the hospital locally and see if they would consider keeping it on hand...but we never have.

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5 minutes ago, Scarlett said:

Pradaxa has the reversal available BUT our doctor says very few hospitals have it on hand so what is the point of it existing.  Weird.  He told us we should talk to the hospital locally and see if they would consider keeping it on hand...but we never have.

That is why I am still on the Jantoven/Coumadin/Warfarin.  And why I would love to not have to keep going to Coumadin Clinic and do home monitoring,  due to my complicated medical case, keeping me with going to the people who deal only with my kind of issues regarding blood, and not having to play phone games, keeps me going to see real people.

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2 minutes ago, TravelingChris said:

That is why I am still on the Jantoven/Coumadin/Warfarin.  And why I would love to not have to keep going to Coumadin Clinic and do home monitoring,  due to my complicated medical case, keeping me with going to the people who deal only with my kind of issues regarding blood, and not having to play phone games, keeps me going to see real people.

Well, bleeding out in case of an accident is a real concern, but dh was on Coumadin for over a year (about 10 years ago) and he hhhhhhaaaattttted it so bad.  He said he would risk another PE and death before he would go back on it.  I hope Pradaxa will go down in  price soon.  So so ridiculous.

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Nurse called.  Doc says to stop the med.  Just going to keep late September follow up and by then we will have the results of this stupid 30 day monitor.

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2 hours ago, Scarlett said:

Nurse called.  Doc says to stop the med.  Just going to keep late September follow up and by then we will have the results of this stupid 30 day monitor.

When I started my beta blocker (metoprolol) I had my blood pressure bottom out (fortunately I was in a hospital when it happened).   Counter intuitively the solution was to take it every 8 hours instead of 12 hours and to halve the dose.   That worked beautifully and I am grateful for the quality of life improvements I have gotten - but my SVTs were landing me on the floor while grocery shopping or volunteering at a food bank, so some amelioration was essential!

The monitors are such a pain!  ...and can cause unnecessary stress too.  One of my rounds of monitoring (3 day Holtor monitor) showed a short bout of v-tach which earned me a lot of fuss and attention and follow up, but was decided to be not a concern (though they told me to put it on my medic alert bracelet and be sure it got mentioned to 911, just in case).  But the worst part was the tape - all the options caused nasty skin irritation.

I hope you get through smoothly and quickly with helpful, benign results!

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