Atrial Fibrillation - pleurisy, pleurisy pain

[Lesley_D]

Hi all,

not sure if this is a moan, bit scared or generally in need of getting things off my chest - no pun intended!

I suffer paroxysmal AF (periodic arial fibrillation) but since being on medication for the last 12 months it has been pretty much ok - As well as recurrent PE's, DVT's etc, emphysema and asthma

I have had a chest infection now since the beginning of December and have been antibiotics all that time, with 4 lots of steroids too. 3 weeks ago, also told I had pleurisy, so more steroids, more weight gain, but still feeling poo. Pain on breathing got worse last week, with breathlessness worse. Part of my problem being, I actually started back at work 3 hours a day, for the first time since being ill in an year. My doc, and all credit to him was good, wanted me off work again but understood when I said I felt between a rock and a hard place about going off sick, as they seem out to prove i am not fit to do my job. Anyhow, my INR is 4.9 so unlikely to be clots, but he sent for me xrays.

Then today, I was cooking dinner, and felt strange, sure enough the palpitations started and my heart was racing - my son was in the next room, but I couldn't call him. this continued past 10 minutes with my heart getting faster, i got onto the floor, and then he came in, I wanted to see if it settled and I felt better with someone with me. Anyhow he got my blood pressure machine, and we tested mine (normally 110/60 with a pulse of 70) and wow my BP was 160/110 and my pulse over 200 - we left it 5 mins and then it went down to 130/110 and my pulse 163. If it had gone on much longer I would of asked for an ambulance but it started to settle, and it's now 130/85, so still a little high and my pulse 90. But it was soooooo horrible.

I am glad to say I have my first appointment at St T's on Tuesday

Anyhow, that's me done

smiles to everyone

Lesley

:).

[tassie]

That would have been so scary!

I too get the rapid heart beat and the feeling of impending badness happening. It just comes on unexpectedly and often when i lie down at night. Totally freaks me out! Of course when I mention it to the dr and even wearing a halter machine for 24 hours it doesn't happen..

[daisy11 in reply to tassie]

i HAVE THIS TOO AND DESPITE ME WEARING A 24 HOUR MACHINE AND THEN A 72 HOUR MACHINE - NOTHING! AND THEN AS SOON AS I AM NOT BEING MONITORED, PALPITATIONS START - ALSO AS EXPLAINED TO DR, THE FEELING IS LIKE A MOBILE PHONE WHEN IT VIBRATES, I HAVE BEEN TOLD I HAVE A HEART MURMUR BUT NOTHING HAS BEEN MADE OF IT. A NUMBER OF YEARS AGO TOLD IT WAS PAR SUPERVENTRIUCLAR TACHY ETC BUT I DO NOT REALLY KNOW TOO MUCH

HOPE YOU ARE FEELING BETTER

[Gadgets]

Sounds horrible, I have had a racing heart / puputations and thought it was down to anxiety not knowing what was wrong (before being DX for APS)

Hopefully things will calm down for you once you get to St T. (got my life back thanks to St T)

[MaryF Administrator]

I am sorry that you have had such an awful time, I am glad to hear that your GP is on the case, I get a mild version of the racing heart thing, however since starting on thyroid treatments for that part of my ailments it has settled somewhat! I hope they can help you at St T's, I am sure they will get to the bottom of things over time for you. Mary F

[viv112]

You need to go to A&E when you have this tachycardia so they can do an ECG and see what is happening. When I went in and my pulse was 180 per minute the doctors were able to see that it was caused by SVT (supraventricular tachycardia). It is the only way to get a diagnosis because the rapid heart beat might not happen when you wear a heart monitor for 48 hours.

[Lesley_D]

Thank you viv

Before I was diagnosed, with APS, I had a 'heart event' and I told them about this AF, thankfully it happened when I was on the heart monitor, and it seems I have an electrical fault - the same as Tony Blair had?! but I can't have the ablation because of the APS and by and large it has been controlled by drugs up til now, this was by far the worst and longest event that has happened.

[paddyandlin]

Hi Lesley,

i am sorry to hear what you went through i do have palpataion type of events but nothing that serious and it always came over like a wave effect so never really took any notice of it hmmm may have to look into this more.

Hope you are ok

Paddy

[kathyD64]

Hi Lesley,

Just read your post... so glad it recovered without intervention but very scarey do you carry a pill to pop when you have af attacks? i experienced sinus tachy related to profound fatigue but not on that scale & that was a horrible experience yours must have been tenfold worse... my hubby did have to go to ccu with fast AF & was cardioverted with iv amiodarone...hr 180's he was so pale and weak... initally i had no sympathy as thought he was swinging the lead as had been drinking night before but when i checked his pulse i called 999 they refused to come long story but after collapsing in the gp surgery god knows how i got him there now as he was so weak he was blue light to ccu...despite advice he still drinks caffeine filled drinks and declined carrying a pill but luckily has not had another attack since.... his was ? stress induced in the middle of moving house and his dad very ill but he does not have APS this condition that can do such horrendous things to our bodies.... hope you get answer soon take care love kathy xxxx

[Lesley_D]

Thank you everyone for your comments -

Well I have been to St T's and I have to say it was rather an anticlimax

I sat with the doctor who asked "well Lesley why did you want to come to this clinic?" I was immediately gob smacked and told her so - I told her I had hoped for answers as to how, this may effect my life now and maybe my life span - how it could be effecting my heart and lungs and of all things that has happened previously in my life - her response ...... " Well Lesley, as a rule APS only causes pregnancy problems and clots - you can't have more children (as I have gone through early menopause), she also said you are lucky your miscarriages happened in the first trimester most APS sufferers loose them later on..... (I wonder is the pain any less or more, whenever you lose a baby??) and are on warfarin so it shouldn't effect you anymore!!"

We spoke about my time in the wheelchair as a paraplegic 7+ years, and it seems that yes probably caused by APS, and although I have had PE's she maintains that my lung problems and shortness of breath and the AF mentioned above are not APS related but due to separate health issues. Apparently although I have had 2 positive APS tests where my Beta2 glycoprotein was above normal, but in her words only just - normal expected 0 - 6 and mine were 14 and 27 although I am sure my doc told me it was 60 something anyhow, back to the antibodies, apparently it is almost unheard of to have positive beta2 glycoprotien test without the other one ...ermmmm cardi something or other not being raised, yet mine is and was always normal. My fatigue is NOT APS she says, nor hair loss or brittle nails, the purple motteling of my skin is, but nothing to worry about, pins and needles in my back due to time in wheelchair not APS Eye sight problems may or may not be APS related

So...... she asked what I wanted???? what to say after what she had said to me, (which I kind of took as positive) - I asked her, what could she do for me that my lung specialist, cardiologist and hematologist are not - her answer?? NOTHING..... So she is repeating my beta2 glycoprotein, the cardi..... whatever it is, checking my live and kidneys (although to date they have been fine) checking me for lupus, my ESR and other inflammatory markers (total of 9 bottles blood taken) `- oh and point of interest, although my hematologist wants my INR to be 3 - 4 the doc at ST T's said she would be happy with 2 - 3

So .......

What can I say?

Smiles and wishes of good health to you all

Lesley

[Lesley_D]

OH PS, I will also post this a a blog for other people to have a read, hope that is ok

[lisakay]

Just reading this post as I was searching to see if "heart palpatations" or "sinus Tachycardia" is related to APS. I was started on Blood Pressure meds around 30, we thought at that time due to family history. Because health wise, I was in great shape. Last year, major heart palpatations, nausea, chest pain...wore a 24 hr monitor and it caught the sinus tachycardia. So changed BP medications and higher dosage. Of course wondering now if all of this is due to APS.

Hope all is well with you Lesley...and as my Mom says...we have to find the right doctors to care for us, ones that will listen and fight for us. I am seeing a new APS specialist tomorrow in Chicago...kind of excited...but dont want to get my hopes up either. Just not a lot of information here in the USA...doctors limited on knowledge and how APS affects our bodies. They just want to manage the blood...nothing else. But I am finding there is much more to it than blood. And I couldnt be more thankful for this site...I have learned more than I could have imagined and the support system seems fabulous! THANKS and take care!