Should I be feeling so ill with ?

[Norfolk_spaniel]

Me again. Still no sign of the amiodarone,arrhythmia nurses are on answerphone (I've left a message) and GP says they haven't received anything. Meanwhile, I feel so much worse. Very dizzy and breathless when I try to get out of bed, uncomfortable feeling across my chest and back, nausea and no appetite. Blood pressure is 120/105 and heart rate is between 60 and 70. Is this normal for afib?I'm frightened.

[BobD Volunteer]

There is no normal with AF since we are all different but it sound like this might be your current normal. If you can't get any answers and are still strggling why not contact NHS 111 and explain. I hate the idea of putting on them like this as AF is neither an accidnet nor an emergency but sometimes needs must.

[Norfolk_spaniel in reply to BobD]

Thanks for the reply. I called 111 on Tuesday as my arrhythmia nurse suggested it. The ambulance was here fairly quickly and the paramedics were with me for almost 2 hours. They did not want to take me to hospital as it is full, so tried to ring the arrhythmia nurse who eventually rang back and said I was going to be given amiodorane. So, we're going round in circles and I'm not getting treated and getting worse.

[Jaydee25 in reply to Norfolk_spaniel]

Why amiodorane. How fast is your HR? This medication quite dangerous and from my reading about it, is used as a last resort. Have you tried other medications? Or a Cardioversion?

[Ppiman in reply to Jaydee25]

This large scale review seems to offer excellent reassurance regarding amiodarone:

ncbi.nlm.nih.gov/pmc/articl...

Steve

[Jaydee25 in reply to BobD]

AF can be regarded as an emergency. In my episodes with chaotic rates over 200 For 12 hours, I was advised to call an ambulance. Sustained high rates can be dangerous.

[JOY2THEWORLD49 in reply to Jaydee25]

HiWhy doesn't the cardiac specialist try you on CCB. Calcium Channel Blocker. On 1/2 dose my h/r went down from 156 to 51 within 2 hours!

Then I learnt to reduce Bisoprolol by Healthline and 3 days later with another low result and feeling light headed I spoke to a Heart foundation Nurse. She said that she knew my private specialist. He was rung and my prescription was changed to

120mg A.M Diltiazem. and 2.5 Bisoprolol at night.

My heart rate continues to be 47 H/R along with low blood pressure.

CALCIUM CHANNEL BLOCKER *** CONTROLLED**** my h/rate within 2 hours.

But there should be a warning on CCBs to start low. Even 1/2 dose of 180mg was too much dosage.

cheers JOY. (73). NZ

Now BP 123/72. and 77-88 H/R day. 47 at night.

[Jaydee25 in reply to JOY2THEWORLD49]

I tried all of the anti arrhythmia medications. Eventually they stopped working or the dosage got too high or the side effects were disabling. Along with AF, I developed SVT with heart rates 250 plus and bouts of flutter which lasted for days, longest 11 days. Needed the CV.s. Doing ok now since latest Ablation. Fingers crossed.

[Norfolk_spaniel]

Just heard from arrhythmia nurse. My prescription is in a pile waiting to be typed. They doubt I will see it this week. Meanwhile, if I feel worse get the paramedics out again. What a shambles!

[Buffafly in reply to Norfolk_spaniel]

I would, because I don’t think that is normal for AF. I’ve just had a week of AF with higher HR and lower BP and didn’t feel like that. Your diastolic pressure is very high. If you are having any sort of discomfort across your chest you should call 999. Did the paramedics do a blood test?

[Norfolk_spaniel in reply to Buffafly]

Thanks for the reply. I haven't had a blood test and the arrhythmia nurse said my BP was acceptable. Feeling totally lost.

[Buffafly in reply to Norfolk_spaniel]

Your arrhythmia nurse is not qualified to decide that over the phone. I really do think you should go to hospital as there are other explanations for your symptoms, none of them good 😕

[JOY2THEWORLD49 in reply to Norfolk_spaniel]

HiRegardless of what the nurse says she should listen to how you feel.

I hope that you are on anti-co-agulants.

Unknown ca Thyroid cancer caused me to have a STROKE with AF then a Carotid artery showed a shadow. Jade the scanner commented 2 for the price of 1.

My stroke awoke me at 2am with a SORE HEAD. I rushed to loo and returned to bed totally fatigued.

I slept until 5am.

Called 111 as I looked in the mirror. Couldnt swallow well, talk, driopped right face and a dropsy right hand.

I live alone.

Cheers Joy. 73. (NZ)

[Hidden]

What you're going through sounds awful! And to be getting the run around like that....

How are you now? I'm no expert but your BP doesn't sound right at all, and I agree with Buffafly that this is not something that should be decided over the phone. I'm sure that at this point you just want to get some help and treatment, but have you tried the hospital PALS (Patient Advice & Liaison Service)? Their contact details should be on the hospital's website. I would also suggest putting all of this - what's happened so far and how you're feeling - in writing and emailing it to everyone involved, if you can summon up the strength.

I hope that you're in a better situation now than you were a few hours ago. Do let us know how you're getting on.

[meadfoot]

Well I think I would get to a and e. Do you have anyone to take you. Its not right to have to continue like this and being diagnosed over the phone in this instance isnt good enough. You need professional help in person. Please push forward.

[Singwell]

I'm with Buffafly and others. I dint think a resting diastolic of 105 is a good thing, even though the systolic is OK. I'm wondering if you've contracted pneumonia with the description of those symptoms? Can you check your oxygen levels? Though I'm guessing the paramedics did that. If you're still feeling this rough I would be going in.

Keep us posted.

[Rubymurray25]

Totally unacceptable ; like most of us you are probably very conscious of taking up a space at A & E but the line has been crossed and I would go down there, sadly it is the way the system works now. (I am currently waiting for a kidney scan, but doctor insisted if my pain got any worse I should go to A&E as the waiting list at our hospital was 47 weeks for the first appointment then more time for the scan.) I was given Amiodarone at hospital when it was the only drug to stop a prolonged AF episode, but it has to be given in hospital first I believe so might be the best route anyway! Wishing you well.

[Ppiman]

They say AF can't kill you, but it certainly feels like it might with its symptoms. For me, anxiety adds the worst burden, and this also means that my blood pressure is high when I first take it. I always need three attempts to get an accurate reading. Your 110 diastolic reading does seem far too high, but your GP and cardiac nurse are well used to these things and know your medical history, so I would put my trust in them. So far as I know, if you are in AF, then your home BP machine won't work at all well, anyway, so maybe that reading isn't correct?

You're going through a tough and testing time. I hope you manage to stay strong. Life can seem a trial, for sure, and getting help is never easy or quick enough these days.

Steve

[Jaydee25 in reply to Ppiman]

My blood pressure machine is invaluable when I have an episode. Blood pressure reading of 120/105 indicates Hypertension Stage 2. It is the second stage of high blood pressure.

[Ppiman in reply to Jaydee25]

I understand that home BP machines aren't able to measure the diastolic pressure accurately when the heart rate is irregular. It must be hard when you have high blood pressure and AF.

Steve

[irene75359]

I am so sorry you are still so unwell, you must be feeling so deserted by the medical profession. Please call 999 if things don't improve. Do you have anyone with you?

[stargazer52]

I have so much sympathy for you. I was in the same position and it was very frightening. They sent me home feeling like that as my average HR was 100 which they're not worried about at all and told me to live with it. Im still breathless and in AF permanently which has never happened before in the 6 yrs I've had AF. Im supposed to be seeing an Electrocardiologist but no idea when. I am anxious that my heart will wear out! (I know it sounds a bit dramatic but that's how its making me feel). I do so hope you get sorted soon.

[JOY2THEWORLD49]

HiIt seems that if you have a SOFT SYSTOLIC HEART MURMUR it is based on one sideof your heart whereas DIASTOLIC high which you have is important and comes from other side of your heart.

When rapid, persistent heart rate is uncontrolled I was all over the place and the BP machine would show up an error.

First stepis to CONTROL your AF.

cheers JOY. 73. (NZ)

[Buffafly]

Norfolk_spaniel How are you now? Do post an update ❤️‍🩹

[Norfolk_spaniel in reply to Buffafly]

Called 111 on Thursday, paramedics came quickly and took me to hospital, NNUH. 7 hours waiting in the ambulance to be admitted and then a night(10 hours) on a trolley in A&E, but that's another story! My blood pressure was low and I was dehydrated due to the hot weather and peeing a lot with afib. All sorted out and I was started on Amiodarone last night. So far have had three tablets. They haven't given me nausea but have made me feel spaced out. Came out of hospital this afternoon and think my heart beat may be stronger already. Many thanks for everybody's advice, it really was reassuring.

[Buffafly]

Great news!