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Sticky Blood-Hughes Syndrome Support
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Heart Flutters (Afib) Are any of you like I am with these please?

I have heart flutters and racing pulse, GP has done ECG all fine, having a 24hr on done Friday. I have only had these for about a month or so, they started out of nowhere, I may get 10 or 20 flutters a day, sometimes the pulse will race after them, other times, the flutters come on thier own, or the racing pulse can occur without the flutters, GP suspects Arterial Fribulation, but we don't yet know why, I know SLE LUPUS and APS (I have both and low protein S too) can cause many heart problems, especially valve issues, with these flutters and I am not going to be surprized if I have a problem, I did have a heart utltrasound last year, that was normal, but I didn't have these flutters then, at first I thought " It's menopause " but GP doesn't think it is at all........

Do any of you have the flutters and racing pulse separately, and does anything kick them off and make yours worse, I would be very interested to hear your own experiences please.

I am on Warfarin & Aspirin, have SLE Lupus, APS, PSD, cerebrovasucular disease, I have also got level 3 kidney issues (GFR 53) and had multiple brain clots, TIA's and DVT and PE and have many other illnesses, too many to list here 20 in all !

21 Replies

Yes I have these.

More often in the evening, when I am calm and comfortable. They are like a flutter or what I think palpitations may feel like. I need to cough and then they stop.

I am 51 and am assuming I need to treat them as peri meno. My pulse races if I do something like climb the stairs, or plump the cushions ( how pathetic).

Often if I take my pulse laid in bed it seems to alter from steady, then a little jump change of speed then back again. Sometimes I get chest pain. But whenever I say to myself if this gets worse I will do something about it, it goes.


Do they ever make you gasp for breath as they happen? Have you ever seen anyone about them?


I had this was given dX of paroxysmal (occasional) AF or atrial fribulation - given a tablet called diltiazam to regulate heartbeat worked really well then also had digoxin added as well all now ok!! For us APS sufferers AF can cause little clots to shoot off - also my heart specialist actually said it was extremely u likely of catching it on ECG tape, but thankfully did - sp please don't leave it push fir it to be sorted :)

Oh as a ps my GP actually said oh don't worry it maybe menopausal ! And Cheryl I got chest pains (vasopastic angina) where hood vessels in heart go into spasm Again this can cause clots to be thrown off in people without APS so we suffers are more at risk.

Please do get it checked




Yes, last year I was diagnosed with SVT - supraventricular tachycardia - only after wearing a 24 hour monitor as the ECG did not show anything, like you. I saw a great heart specialist who told me that in that 24 hours the heart had skipped beats 1049 times! AF was also suspected at the beginning. I kept feeling faint and having pains in my chest - I presumed it was a heart valve problem caused by APS.

However, SVT is caused by a short circuit within the heart and has nothing to do with APS. They can ablate it but that means heart surgery - and to use the words of the doctor "You've got APS and Mrs Complication written all over you so it's not worth the risk".

Hope you get some results from your 24 hour monitor as tachycardia can be very scary.


Hi Kate got results of my 24 ecg said it was satisfactory, as the skipped beats are worse, I have seen my GP who said I only had a few missed beats, I forgot to ask how many in 24hr period, am seeing a specialist now from the Hughes list near me, and am sure she will find out why I am having them. I like you feel it maybe heart valve caused by APS but that is only my guess NOT CONFIRMED maybe It will be somehting entirely different like yours. Like you for other things, I have been told I am too much of a risk for surgery. Although I desparately wish I could have it for 2 of my other health conditions. Yet you do read of people on this forum who have had surgery & are OK. It is down to gauging the benefit and risk, hope you are doing OK.


Like you I have been told I am to avoid ALL suregery unless vital. But there seems so many reasons for AFib & Tachycardia. I am having the 24 hours monitor fitted tomorrow, so we shall see problem is the waiting time for results is weeks and weeks, my husband waited a few MONTHS for his results from one. It is scary as I am also mobidly obese, (8 stone overweight) but even with diet I cannot get the weight off enough, as I cannot exercise at the moment, I NEED TO GET THE WEIGHT OFF, even a health person 8 stone overweight is at risk of all sorts, but us with LUPUS and APS plus what ever else we have it is VITAL !!!!

The flutters happen 10 - 20 times a day or more, it has only happened since I had the flu (I know it could be related) but I do feel it is more likely my APS and Protein S (also blood clotting illness) My warfain and asprin do NOT seem to be controlling me like they have done since 1997 my INR range is 3.0-4.0 and I have 75ml asprin day too. Since 1997 I have had quite a few TIA's and a larger stroke, although I was told there was no evidence I had had a stroke, I know, I have not been well since, the dizziness and heart problems have all arrived since Dec 2011 when I woke up totally dizzy with the room spinning like I was drunk. I have

Not been well since.

The problem is often we with APS and or LUPUS usually have a lot of other illnesses, and our symptoms can be one of many or a few connected of our illnesses, so you never know for sure which one is doing what, You are right we are complicated !

Do you just get the racing heart beat or feel the blips too ? Do you gasp for breath when you get a fuller, at times it make me jump like my heart has been shocked with the things they use to re-start the heart.

Lets hope my 24hrs gives the reason.

I think we all assume it will be a valve or similar, don't we? We shall see .....


dont especially blame your weight, yes I am overweight to, but these eptopic beats were just as bad 200 pounds ago.


Hi, You have answered a 2 year olf question.

If you have APS and want to put a question please do.

Kerstin in Stockholm


I won that DNA lottery and inherited an a fib which runs in my Father's family. It is extremely mild, and has rarely caused me any problems. I only mention it because the a fib became much worse during my peri-menopause years, but has retreated to its prior, very low profile setting since I came out on the other side of menopause. And yes, some of those bad peri-menopausal a fibs could be described as feeling like one would imagine a heart shock would feel like. A bit scary for sure!

Father counseled me to, on those multiple a fib days, to count the # of a fibs per minute before and after taking a slow, short walk -- he said, " like around the yard or up and down the street." Then re-count the afibs. If the number of a fibs per minute stays the same or goes down after esercise "you have my permission to ignore them." If the number goes up, "that's when you consider -- again CONSIDER going to the hospital. That's when you ned to moniter your other symptoms for systemic signs that the afib is causing circulation problems."

OF course, his advice was for the particular kind of a fib which he knew to run in his family. Who knows if this advice applies to you?

Good luck. Glad you're going to get the 24 test. Hopefully that will provide info your docs can use for a good treatment!


Thanks I hope it can tell me something, there seems to be SO MANY reasons for A Fib.


I had occasional fluttering and found (prior to APS DX in March post stroke) that I had aortic insufficiency noted on echo two years ago. Doctor said aside from that my heart was healthy and no other problems were noted. However did have some fluttering two days prior to my stroke. I was told that I had a clot from my heart that caused the stroke. I am now on Plaquenil, Warfarin and Lipitor. However, started on 80 mg of Lipitor post hospital for 2 months with severe leg pains. Lipitor was reduced to 10 mg but still having some calf muscle pain. Stopped the lipitor for a week, but had fluttering two nights in a row , got scared and resumed the lipitor. I will speak to my neurologist and cardiologist shortly to see what I should do. I think as long as I'm on my warfarin--clots hopefully will be avoided.


How are you doing now, I hope you are doing better


Yes, thank you. I'm doing better on the statin and exercising to strengthen my legs. I have introduced exercise slowly since my stroke on March 1st. I was also taking an allergy med every day and just stopped that. I understand that even though it's an over the counter med, allergy meds can cause tiredness and palpitations, etc. Oy, what a journey.


Hi I am glad you are doing better, you are very wise doing things slowly bit by bit, It can be a journey yes, but you are not doing it alone, we are all here, and understand and you will always find someone who has had a similar experience, and that can help, as you then don't feel so alone. x


I live in New York City and very few doctors are aware of how lupus and APS affects patients and how to treat them. I'm lucky because my neurologist and rheumatologist (lupus specialist) both are aware, however, I haven't found an internist is aware. I love this forum and it has made me feel like I'm not alone. Thank you.


Hi I am so glad your neurologist and rheumatologist (lupus specialist) both undrstand. I hope you can find an Intern who does too. I am very happy that you don't feel alone being a member of this forum, you are not alone, there are lots of us with this illness Take care x


Thank you so much.


Hi, Lipitor is a statin? is that right? I had also a little pain from my statin the first half year but no more now. You can take an other brand if you have pain I guess.

I would not say that it is the Lipitor or the warfarin that may cause your "fluttering". I can also feel some heavyness in my chest at night but I do not know if it is amagination? Stress perhaps? Or really the walves making trouble?.

I do not think it has to do with the meds. Of course you must be in range with the warfarin!! Tell the cardiologist what you are feeling. Is your bloodpressure ok?

Try to help............ Kerstin


I sent you an answer but it landed on "Cherrydi" 1 years ago I guess. Kerstin


When I stopped the statin I had fluttering--that scared me.


Been dealing with these for 30 + years, still am. Sometime I have 2 or 3 a day some times 10 a minute. Been through a lot of tests, Cat scans, holters, blah blah... the only thing I get is older. I suppose at 56 im menopausal even though I had a hysterectomy in 2003. Anxiety, stressors. Sometime I get them worse after I eat, or when I bend over. If you have GERD or heartburn, they get worse when you eat acidic or gassy foods. Once the Vegas nerve gets irritated your heart skips like an old TV set. I call it heart hiccups. What helps, hmmmmm. reassurance, keep busy when they get bad. I suggest a puzzle, knitting, coloring...you get the picture. Eat smal meals, avoid food allergies. Dont let these things steal your lives. If multiple Doctors ( because 1 is never enough) tell you your heart is sound it is. You have to work on desensatizing yourself to them. Its hard for me because My dad passed of heart problems.

im not gonna say relax, who can relax today? Goodluck.


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