Blood Pressure: Getting concerned about... - Atrial Fibrillati...

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Blood Pressure

Janshep profile image
43 Replies

Getting concerned about my BP and wondering if anyone else has the same problems as my dr just puts it down to my AF . I only take it when I’m feeling poorly and dizzy as I don’t want to sound obsessed . Yesterday evening it went up to 178/87 and now it’s 91/53 and it keeps rising and falling . Tried talking to my dr but he puts everything down to my AF so I thought I would ask you lovely people with experience for advise xx

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Janshep profile image
Janshep
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43 Replies

Accurate BP readings for folk with AF has always been problematic. Some professional medics say that accurate readings are only possible with the old fashioned glass tube/rubber bulb device (can never remember the name). Others say that these are no longer used due to the mercury content. Some say that more modern digital monitors work better, but it’s not helpful when readings fluctuate. I know this isn’t overly helpful Janshep, but it might explain the changes in your BP.

Janshep profile image
Janshep in reply to

Thank you , keep trying to convince myself the same but still worrying me which makes it even worse lol xx

CDreamer profile image
CDreamer

Mine goes up & down like that too & I am used to it but does more down than up! I go to 60/40 sometimes but generally as long as it is above 90 systolic & generally under 170 ish then the docs don’t seem concerned & it is due to the AF.

Janshep profile image
Janshep in reply to CDreamer

Thank you , do you get the dizziness too ?

CDreamer profile image
CDreamer in reply to Janshep

When in AF - yes. I also have POTS which compounds it along with hyper mobility which also means my blood vessels are too stretchy. I used to faint sometimes.

What is your average, normal BP when not in AF?

Janshep profile image
Janshep in reply to CDreamer

It’s hard to say because it varies so much but generally really good at around 120/64

CDreamer profile image
CDreamer in reply to Janshep

That’s really good - text book!

Janshep profile image
Janshep in reply to CDreamer

Yes it is that’s why I get concerned when it suddenly drops low or rises so high so suddenly xxx

Finvola profile image
Finvola

I could never get a proper reading from my old Omron when I was in AF - it just gave me the broken heart icon.

Have you tried to establish your normal BP reading when not in AF? If all is OK, then it is either your AF doing it, or your BP monitor getting confused by your fluctuating heartbeat.

Janshep profile image
Janshep in reply to Finvola

It’s never the same twice so your probably right . Was advised by the dr to take it 3 times and take the average but it doesn’t stop it being very high or very low xx

cassie46 profile image
cassie46

I am in permanent AF and my BP readings are all over the place. I have for sometime now taken 3/4 readings over a period of 10 mins and find it normally settles to a reasonable level. I do not take it all that often, about once a week and keep a note of it for doctor as I am one of those that when taken at the surgery it is nearly always high. It often amuses me that when I go to the Cardiac outpatients for a check up, the cardiac department is at the far end of the hospital (it's a very long walk) always a hassle parking, find a seat, immediately called in for blood pressure check and nurse says - of thats high or we cann't get a reading, they never try again, get to the Doctor and he says the same thing. The number of times I have said if you tried again when I've had time calm down it would be different.

Cassie

Janshep profile image
Janshep in reply to cassie46

Sounds familiar Cassie Even having a bp check with the nurse at my surgery is up a flight of stairs and I can’t breath time I get up there lol xx

Mrspat profile image
Mrspat in reply to cassie46

Sounds familiar and I have an appointment to discuss BP meds, which I am not keen to take on top of everything else.

Janshep profile image
Janshep in reply to Mrspat

It’s good to know I’m not on my own Hope you get it sorted

irene75359 profile image
irene75359 in reply to cassie46

My first reading when I take my blood pressure myself is high, never mind the level it reaches when I have it taken at the hospital!

Hilly22 profile image
Hilly22 in reply to irene75359

Same here. I take it three times in a row and ignore the first two!

Spoiler profile image
Spoiler in reply to cassie46

Yes, dumb, huh? Same story here. The nurse trucks it down the halls with you following, sit you down to take B/P along with questions. Mine is always up. Lol

GinaG73 profile image
GinaG73

Hi

I was in A&E 2 weeks ago with Af lasting 12 hrs BPM 180-200 and BP at 60/40

Some Drs I’m afraid are not qualified enough in this area on why it happens and didn’t seem to concerned .

Which doesn’t help us does it, as at times it can not only be frightening but worrying too. Which again doesn’t help the AF.?

Good luck xx

Janshep profile image
Janshep in reply to GinaG73

I just find it strange that the Drs are not more clued up on it because it’s not uncommon

Cat04 profile image
Cat04

I have been recently concerned as my bp is fluctuating from 195/99 to 80/40 feeling very ill when it drops so low, but unaware when it goes high. I visited gp who wasn't overly concerned but asked me to record it 3 times a day for a month and return for another appt (next Tues). I am sure that these big fluctuations cannot be right or good for you, but if my beta blocker is increased I get too low, dizzy & faint, go into af & end up in hosp (also have postural hypotension which doesnt help!)Misery & anxiety either way!

Janshep profile image
Janshep in reply to Cat04

You have just described exactly how I am and feel 😞it was the same for me they tried increasing my bisoprolol when my BP was high but it dropped very low. Like you say it is scary when you feel so ill and I’m reluctant to dial 999 as advised by my dr because I would live in the hospital x

Jacqlihe profile image
Jacqlihe

People always have trouble taking blood pressure when you are in afib , its like trying to take your pulse! your Doctor and EP certainly will know this - and hopefully reassure youI but it is important they know its going up and down

they have always told me they need to check to make sure it is not going too low, which I sort of understand

I have afurther problem I which often causes chaos I cannot have it taken by a modern automatic machine as it causes me a total panic reaction and is grossly inaccurate even when I am well so have to hold out to have it done with a manual machine , which they usually have ( there are issues with the automatic ones) and luckily my doctor and some hospitals understand this , and these do seem to give much more accurate readings

Janshep profile image
Janshep in reply to Jacqlihe

Yes mines the same my dr and nurse use manual bp monitors As for an EP Iv had AF for 2 years and never seen one and I am supposed to have had my 6 month appointment with my consultant in February and Iv just had the appointment through for July Sad times especially when your feeling so poorly 😞

Cat04 profile image
Cat04 in reply to Janshep

Sounds familiar, mine was due in March, telephoned and wad told they are 6 months behind with appts, so looks like Sept for me! This is EP follow up appt to my emergency admission last Nov at Derriford hosp following a visit to my gp who called me an emergency ambulance!

Janshep profile image
Janshep in reply to Cat04

Doesn’t help when your feeling poorly all the time does it 😞my doctor told me to ring an ambulance if I’m worried which is just ridiculous and once when I did have to go I was on a trolley in the corridor and painters were literally painting the walls over my head 😞Best not to get ill 😀

Hilly22 profile image
Hilly22

Hi

Might sound a strange question, but are you using an arm BP device or one you use on your wrist?

Janshep profile image
Janshep in reply to Hilly22

I’m using a wrist one but Iv checked it with the one my nurse uses and the ambulance one and it’s very similar each time xx

Hilly22 profile image
Hilly22

I was given a wrist device which is also very accurate but I hadn't realised what a difference the level of the arm makes when using it. I had a terrible evening after discovering that my BP shot up when I stood up, especially after googling and discovering that I probably had something very rare and life-threatening. I was in tears! Then my husband said I should see what happens when I raise my arm in the air ... completely different (low) reading. Very relieved but I did feel a bit embarrassed lol. At least I slept that night :-D

Hilly22 profile image
Hilly22 in reply to Hilly22

Oops, replied with a new comment! My social media skills are obviously as bad as my BP taking skills!

P.S. I'm new on here!

jeanjeannie50 profile image
jeanjeannie50 in reply to Hilly22

Welcome to the forum Hilly.

Jean

Hilly22 profile image
Hilly22 in reply to jeanjeannie50

Thank you Jean. I'm finding it reassuring to be part of such a friendly and well-informed group. I was finally diagnosed with AF a few weeks ago after having intermittent episodes on/off for years (pretty sure it's vagal). This forum is invaluable x

jeanjeannie50 profile image
jeanjeannie50

Morning Jan - Blood pressure will drop if you are not drinking enough fluids. So next time you notice it's low, just think about what your fluid intake was like before the episode. Just in case it's something as simple as that.

Jean

Janshep profile image
Janshep in reply to jeanjeannie50

Thanks Jean but I drink constantly as I’m always dry x

Polski profile image
Polski in reply to Janshep

Have you asked your doctor about this symptom? It could be diabetes or something else, which might explain the BP variation. Just a thought!

Janshep profile image
Janshep in reply to Polski

Yes Iv had blood tests and all clear but to be honest I don’t think my dr knows much about AF which doesn’t help me much xx

Steve_ profile image
Steve_

Try taking readings and not looking at them until the end of the day. I find when I do that, and I get used to not looking at it immediately, it usually drops right down. Anxiety can push your BP all over the place.

Janshep profile image
Janshep

Thanks Steve I will try anything xx Just had to stop work because I’m really dizzy again but bp is almost normal 😞 getting so fed up with myself

Janith profile image
Janith

You may have labile high blood pressure. It fluctuates greatly due to emotional issues. It is borderline hypertension. Nonetheless, there is a risk. You should be on some type of BP medication. Look it up! I have it.

Janshep profile image
Janshep in reply to Janith

I am already taking lasartan but if it’s increased my bp drops dramatically x

Janith profile image
Janith

I am taking lasartan potassium as well. Does it bother your eyes and nose. Red eyes, dripping nose?

Janshep profile image
Janshep in reply to Janith

No and have been taking them for about three years x

Janith profile image
Janith

Thanks ... l am allergic to something that l am taking. I also take sotalol sp? for afib ... a very low dosage ... l fear that may be the culprit. I have only had two episodes of afib and none since starting sotalol. I’m terrified to stop taking it.

Janshep profile image
Janshep in reply to Janith

It’s horrible isn’t it !! Don’t think any of us can be sure what to do for the best 😞

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