I NEVER LEARN

[kocoach]

Hello everyone, It's 5:44 AM in California and the paramedics have just left. I called them as while lying in bed I felt nauseous, and stomach felt odd so I put my oximeter on my finger and watched it go down to 29 and then back up to baseline HR for me of 50 and it really freaked me out but I tried to lie back down and felt the same feeling in stomach again and put oximeter on and watched it go down to 31 this time, and tried to lie down once again but after a couple of minutes the same nausea and stomach discomfort and once again put oximeter on and it went down to 33. Now I'm really starting to worry and I went online to see if I could get some information, that was the wrong thing to do as several queries listed everything from possible heart failure to heart attack so I called 911 and the paramedics came out. They did a 5 or6 lead ekg at first and all the other tests and then did a 12 lead ekg which they said everything looked fine HR was 58 blood pressure was ok. Their diagnosis was I might have been going into afib and the HR dropped that low for a couple of seconds but went back to baseline after each event so No Big Deal, they said they could take me to the ER but all they would do was monitor me for a few hours and then let me go home, been there done that many, many times in the past, so I decided to stay home and write this post because knowledge is power over these anxiety and panic demon's we face with afib. The thing that troubles me the most is that I've had afib for almost 35 years now and it still messes with my mind as I think, is this it, the end? I would just like to insure all of us who suffer with afib, is that all the Dr's., and emergency people I have seen because of afib say it's how you feel not what these gadgets say, but guess what, I have never had this feeling of nausea and an emptiness in my stomach as I had this time and what's ironic I am on day 12 of a 14 day study of wearing a zio patch. I just hope this post may help some reader's who are finding it hard to deal with this very complex and trying malady called afib. Bottom Line is How You Feel.

[Cavalierrubie]

Thanks for sharing this with us all. Glad you are ok. It is a very difficult illness to deal with and l think if we are all honest it can scare the h….out of you when it rears its ugly head. Although it is not life threatening and treatable, at times it can be a burden, and depressing and why me? I am grateful that mine was caught on an ecg. I know l had problems before it was diagnosed and if not caught it could have been much worse. Lots don’t know they have it. The weird, individual symptoms we get are only known by ourselves and when something is different in our bodies, only we know how we feel, no gadgets and no doctor. Go by your instinct every time. Take care.

[kocoach in reply to Cavalierrubie]

Thank You so much for your response. When you live alone as I do your mind seems to constantly attack you with negative thoughts. Have a Blessed Day and Thank You Again.

[Cavalierrubie in reply to kocoach]

Yes, l have been there. I think we are all very courageous with this, especially those of us who have to deal with it alone. Blessings to you too and you take care of yourself. ❤️

[peachtreepiggy in reply to kocoach]

I live with a special needs young adult and when I am having these episodes, I not only have to worry about myself and my symptoms, but who to call (my ex and her dad) and how long it will take him to get here if I call the ambulance! A constant juggling of my worries......

[kocoach in reply to peachtreepiggy]

You're so right in your assessment of how afib can mess with our heads, I unfortunately have no one to call, no friends or relatives and like you I wonder who will take care of my 16 year old cat companion or feed the stray feral cat's if I have to be admitted to the Hospital. This afib is a very stressful "thorn in the flesh." I pray things will get better with your afib and I have found out one very important lesson through this journey; Listen to the Doctors. Thank You and have a Blessed Day

[Peacefulneedshelp in reply to kocoach]

That was my first thought, do you live alone. Yes, that would make things worse not to have someone as a back up to help you. Glad you are ok.

[mav7]

Google "accuracy of pulse oximeters for heart rate" and it will reveal they aren't the best for accurate heart rate readings

It would be best to invest in an Omron (reveals blood pressure and heart rate), Kardia, or Apple Watch.

The Zio Patch you are wearing is the best. It will reveal exactly what happened at the time of your incident and your rate and arrhythmias for the 14 day period. This will greatly reveal to the doctor the proper medication and treatment.

Best to You !

[kocoach in reply to mav7]

Thank You, I do have an omron 10 series and a 7 series as well but I was told to use the one the VA gave me. Paramedics said if the rate only drops for a couple of seconds then goes back up to baseline not to be too concerned if I don't have any symptoms. Thank You for the information on monitors. Have a Great Day.

[Silky57]

You did the right thing calling 911. I was once told they’d rather check us over 20 times than miss a single emergency. The early hours are the worst for our minds working overtime and I know that must be so much worse when you are alone. Hope you’re reassured for now & have managed to get some rest.

[kocoach]

Thank You, and the paramedics reiterated exactly what you just said when I told them I was sorry for calling them to come out. I send the zio patch back in 2 days so shortly after should know a lot more. My last appointment with EP just a week and a half ago said I would eventually need a pacemaker but I vehemently said NO. He told me he would see me in a year for follow up appointment. Have a Wonderful Day.

[Cavalierrubie in reply to kocoach]

You say you have had AF for 35 yrs. can l ask what meds. you take, or if you have had any procedures? I am slowly transitioning from paroxysmal AF into persistent AF and my GP has just prescribed Digoxin. I know AF is progressive so would value your experience. I am only 6 years into this. I am 76 yrs old. Thanks.

[kocoach]

Hello, I was on a study drug called Dofetilide (Tikosyn) for 25 years and it worked very well for me, then I started to have break thrus of afib and ectopics and made a lot of trips to the ER. Then I went to a heart hospital down the street from me for something else besides afib and was admitted for a week and without my knowledge I was switched over to amiodarone by a heart specialist, had I known I would have refused it. When I was released to go home, I shortly afterwards saw my EP at the VA Hospital and he said he agreed with the Dr. who put me on amiodarone. I tried to get off of this drug but the EP refuses to allow me to as he said "this was my last hope", so I have been on it for about 6-7 years now but it only started working by limiting episodes of afib to maybe 4-6 times a month with longest duration of around 24 hours when I lost 45 pounds, before that I was having episodes every 2 to 3 days lasting 24 hours. Other medicines I am taking is Lisinopril 2.5mg, Atorvastatin, Vitamin D, and daily baby aspirin due to having 2 stents put in in 2017. Good Luck on your journey with afib. I also might have had an ablation in 1993 at the VA but I can't say for sure as the procedure was not told me and there was a big article in the newspapers as the Dr. who was treating me was doing this without patients knowledge, I was told that he was going to see if he could get my heart to speed up feeding something through my groin and he said if I felt heart racing to lift my hand up and they would increase my sedative, which I did. The next thing I remember was waking up in my hospital room with a cut in my groin area and I remained in the hospital for 2 weeks. The reason I can't say for sure is because the records dept. at the VA will tell me nothing, fearing a lawsuit probably. By the way the Dr. who was taking care of me went on to become one of the leaders regarding afib in the world, his name is Dr. Phillip Sager. Hope this helps you as it can be a journey. Have a Wonderful Evening.

[Cavalierrubie in reply to kocoach]

Thank you.

[Jaco53]

ive always felt my afib was a stomach based trigger not heart based. Lying down just agitates my heart somehow and siting up seems to solve it. I’ve had to learn to sleep more upright and to not over stuff myself !!!!!

[Davidc1075 in reply to Jaco53]

Hi I suffer from IBS and bloating and this brings on my Af. I read a very good article on the link between stomach and heart by the York Cardiologist. Maybe of use to you best wishes

[kocoach in reply to Davidc1075]

Thank You Very Much, I will read it. Have a Great Day.

[Peacefulneedshelp in reply to Jaco53]

I too have that issue at times. So I use a wedge to elevate me and that seems to help.

[kocoach in reply to Jaco53]

I am starting to think my afib is related to Vagus nerve as well. Thank You Have A Great Day.

[Corazon17]

Do you know what the cost of the Zio patch is? (I'm in the U.S., too.) I have Medicare, but no Part B supplemental.

You say you've had afib for 35 years. Is this the first time you've used the Zio patch?

After years and years (maybe 35; I'm almost 77) of suspecting something strange "in there," I got a Kardia thing, quickly got an afib reading, then persuaded my GP of 12 years that something is amiss.

Then that doc did an EKG and, as luck would have it, I got afib right there on his table.

He prescribed metoprolol, and I believe I can tell a difference (after 9 days) that is good.

Now I'm starting my afib adventures, and I wonder if a multi-day patch would be appropriate for me to help determine if I can skip blood thinners, on the premise that their risks outweigh their benefits, if my episodes are extremely rare.

Thank you for your post.

[kocoach in reply to Corazon17]

I really can't tell you the cost of the patch as I get my treatment from the VA Hospital and it is free but as one poster replied the zio patch will tell the Dr. everything going on with your heart. I am also 77 years young and my EP tried for years to put me on apixiban but I refused until finally something in me said to start taking it and I am so glad I did as it has relieved a load of stressful worry from me, although you wouldn't know it by my post. I would personally say for me the benefits far outweigh the risk as a stroke is very hard to undo. If you are prone to falls and risk of banging your head I might take that into consideration but if not it's really a no-brainer. I am an ex boxer and I have punched myself in the head when upset a couple of times and then I have to drive to the ER and have the usual blood tests and head c-t scans and so far no problems at all. Hope this helps, Have a Blessed Day.

[Corazon17 in reply to kocoach]

Very helpful. Thank you. Your handle, kocoach, did make me think you were connected with the sweet science.

How often do you have afib episodes?

[kocoach in reply to Corazon17]

Since I've lost weight my afib burden went from every two or three days, lasting 24 hours to maybe 4-6 times a month with the same 24 hr duration, really not that bad it's just the psyche games it plays with your mind, much like boxing. Have Yourself a Super Day.

[Singwell]

Oh gosh - that must've been so upsetting! Thank you for sharing. I do believe that the neurons inside the heart send distress signal to the brain when our AF kicks off and it's an alert call. I'm guessing you live alone? Is there anyone you could message or chat to when you feel like this during an event? I did this for almost 2 years with a couple of 'AF budddies' - just ordinary friends- because my anxiety was so acute. Just a thought.

[kocoach in reply to Singwell]

Thank You for your suggestion and yes I am 77 and live alone and I have no friends or relatives just a pet 16 year old cat. I know when the paramedics come and are finished with their triage, they do talk with me as they realize I am alone. After 35 years one would think I would have adjusted to this afib but I just can't seem to. Thanks Again and Have a Super Day.

[reinaway]

I do so sympathise with you as having had PAF for years and having gone so far as having a irreversible AV node ablation I still have the very rare episode of AF. These now do start with waking in the middle of the night feeling freezing and nauseous and then uncomfortable in my heart. However completely without the terrible pain and discomfort I used to have before the procedure. I don't think anyone knows until they experience it just what an AF sufferer goes through. Good luck with finding a solution to your problems.

[kocoach in reply to reinaway]

Thank You So Much, I have been offered an ablation, pace maker, but no medication adjustments as I am told this is a last resort pill treatment. Thank You and I'm glad you're doing better; Have a Wonderful Day.

[Cavalierrubie in reply to kocoach]

I know two people who have had pace and ablate and they said they are much better for it. Just thought you would like to hear that if you have any worries (who wouldn’t). Let us know how it goes for you as most of us will probably be faced with the same eventually. Your experience is invaluable on here. Hope you are feeling much better now. You will be ok. Love and prayers.

[kocoach in reply to Cavalierrubie]

Thank You for those encouraging words. Like I did with apixaban I will hold out until I feel it is absolutely needed. Have a Very Blessed Day.

[Cavalierrubie in reply to kocoach]

Yes, that’s a good idea to hold out for as long as possible. It’s good to know that there is more they can do for this horrible illness. It’s such a complex condition. Hopefully, one day they will get to the bottom of it all. Enjoy your day. 🌞

[kocoach in reply to Cavalierrubie]

Thank You

[Singwell in reply to reinaway]

Too true. It's impossible to explain to others isn't it? Thank goodness for this forum!

[kocoach in reply to Singwell]

I certainly will AGREE with you on that. I have tried to donate to HealthUnlocked several times but it will only let me do something like a $3 dollar donation. The importance of this website is so valuable I want to donate so much more but don't know how to do it. This site is a Godsend for people with afib.

[bassets in reply to kocoach]

That's very true. I hope you are feeling better. When I was first diagnosed I had been nauseous and faint and thought I was having a heart attack. Not a good feeling! Let us know how you are going on and best wishes.

[kocoach in reply to bassets]

Thank You, I hope you're doing good now and yes, I will let you guys know how it goes. I send my zio patch in today so I should know shortly thereafter. Have a Wonderful Day.