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Awful Fibrillation

Dorchen profile image
22 Replies

thanks all who have replied

I have not seen a Cardiologist face to face for three years , just phone calls spasmodically. You cannot get to see a GP here in Bristol either

The last call I was told I should up my Dosage of Bisoprolol to 15mg as my legs are retaining water and I am poor on balance . He has also added another diuretic added to the Bendroflumethiazide !!!!!more tablets

Since taking the Bisoporolol 15mg my pulse is faster than ever

I am despairing on who to turn to get decent care as the Health Service is broken big time

It is a vicious circle , no motivation , weight gain , lack of excercise therefore. I have lost my mojo totally . Was a sportswoman active and busy to now a couch potatoe who feels tired and breathless all the time.

sorry for the whinge I do try and stay positive most of the time but it is hard

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Dorchen profile image
Dorchen
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22 Replies
Jalia profile image
Jalia

Hi Dorchen...me again! You really are suffering. The lack of support in your area is quite appalling. As Bisoprolol is intended to lower your rate and its doing the opposite I know where I would put the darn tablets 🤔Is it possible for you to get a private consultation with an EP? It shouldn't have to be like this but sometimes it's the only way .

Dorchen profile image
Dorchen in reply to Jalia

giving it serious thought Jalia ,xx

alpha666 profile image
alpha666 in reply to Dorchen

Hi Dorchen, I was in a similar situation to you felt awful my GP just told me to up my medication in particular Amlodipine to 10 mg daily, this made me feel significantly worse, he also referred me to my local hospital to see a cardiologist, however you can look on the NHS at waiting times, and my local area was the hospital with the least queue but it was still a 22 week wait from referral until you got the appointment to see the cardiololgist. Feeling very rough and extremely breathless i just thought i cant wait nearly 6 months to see someone, so i decided to go private, in fact the nurse at my local GP who was taking blood stated the best thing to do was go private see a consultant quite quickly and once you have been assessed ask to be referred back to the NHS so you dont incur any more cost. This she tells me is what she done and was seen within the NHS much more quickly. So it seems the hold up is to getting that initial assessment from the consultant, then it looks as if things move quite quickly.

I had a look around at private cardiololgists and had a good read of the reviews that people submitted, i identified one who looked really good and requested a consultation, this i had 2 days later, i also had a ECG and Echocardiogram, and a review of my meds, he changed some straight away, i had to stop the Amlodipine and increase the Bisaprolol, and he changed my water tablet to Furosemide, my breathing has now much improved although i still have AF, and i have been put forward for a Cardioversion with a referral back to the NHS and the appointment for an NHS cardio is July 4th so a couple of weeks away, by any means not a cheap process but i thought it was worth paying the price, not really the correct way to do things but it certainly cuts out a lot of the waiting especially if you are feeling very ill, it can be quite frightning too, hope this helps all the best.

Dorchen profile image
Dorchen in reply to alpha666

good luck , I had Cardioversion it was so easy , unfortunately I only stayed in sinus rhythm for a year x

Dippy22 profile image
Dippy22 in reply to alpha666

You’ve got almost the same story as me! Seeing a cardio privately certainly speeds up the process.

alpha666 profile image
alpha666 in reply to Dippy22

Hi it looks as if its a simliar story all over, i am based in the midlands, I know really its not the correct way to do things as it looks as if you are jumping the queue but when you feel quite ill you have to do something, although in my case i think the GP hadnt got my medication sorted correctly, as i said the consultant stopped the 10mg daily of Amlodipine straightaway and increased the Bisaprolol from 2.5mg daily to 5mg twice a day and changed my water tablet from Bendroflumethiazide to one 40 mg tablet of Furosemide daily.

And in 2 weeks a Cardioversion and he tells me the addition of maybe another med called Entresto, if that doesnt work out i may need to be fitted with a pacemaker.

As for paying it cost me about £350 for 2 sessions with the consultant and an Echocardiogram and a 24 hr ECG, best money i have spent to be honest you are in great hands and you can ask as many questions as you like, and the key thing is i am now feeling better than i was and i am back with the NHS so no more cost and the wait has now been reduced to 2 weeks.

Bit long winded but i thought if someone else reads the details it may just help somebody out.

Dippy22 profile image
Dippy22 in reply to alpha666

Quite agree it feels like queue jumping. However, in my particular case I felt it was necessary. Last October the AFib which had been very paroxysmal since Jan 2020, suddenly went crazy and I was having episodes lasting 2-3 days 2-3 times a week with a HR around 160-180. I went to A&E a few times where they referred me to cardiology. It took until late January before I finally got a phone consultation with an arrhythmia nurse. Nowhere near actually seeing a consultant. She to my height and weight, spoke to consultant and came back to with a prescription for Flec and Digixin. She declined to ask answer any questions and said I could come back to them anytime in the next 12 months if I had any concerns. Are you kidding me?!? These are two heavy duty heart drugs! So I’m where desperation to get more info I booked in to see a cardiologist privately. He said straight away not to take the Flec until I’d had a heart CT scan and that ‘they’ should have done that as matter of standard procedure as Flec May not be the right drug for me, plus he looked me up and down (I’m petite) and did reduce the digoxin from three tablets to two. He explained in detail what my heart was doing and I felt a lot more confident after that. But! I should NOT have had to pay for such basic treatment and information.

So far it’s cost me quite a lot of money, but as I’ve not tolerated any of the drugs or they’ve had no effect the only course of action is an ablation and get off the filthy Amiodarone asap.

FancyPants54 profile image
FancyPants54

Did they tell you why they think increasing a rate control drug would help the fluid retention? That doesn't make much sense to me.

Hello Dorchen, please take a look at my reply to GranmaWendy as some of what I suggested might help you. Please understand, I am not medically trained, most of what I say in reply to posts is from information I have picked up over the years from a large variety of specialists who discussed a number of AF issues at AF Support Group meetings. Even they made caveats, because everyone is different and therefore can react differently to all forms of treatment.

Almost every EP/Cardiologist would make the point that provided AF was controlled, either medically or by a procedure, it did not impact on longevity. However, if not treated correctly, it could develop into heart failure which I know sounds alarming, but can also be treated when diagnosed early. The two things you have mentioned which are concerning are the dose of Bisoprolol being recommended and the fluid retention in your legs and the fact that your pulse remains high doesn’t help either.

I know you shouldn’t have to, but I wonder how good you might be at bringing your competitive spirit to the fore and politely banging the table about having a face to face appointment with a specialist. Of course it will not be easy and maybe a family member could support you but in some areas, the appointment situation has eased so it’s well worth giving it a try……..

BenHall1 profile image
BenHall1

The Health Service resembles a train wreck .......... the most awful thing ever ... and at GP level its totally trash. I use the NHS website to investigate Medications, and did alot of research on Bisoprolol ..... once I felt confident I just did my own thing and - (as I said earlier) - told her afterwards. In any event I knew I couldn't continue with 7.5 mg of the stuff and had been on 5 mg since 2010, so I knew pretty well what benefit I'd get by cutting back ......... and doing it very slowly as is the normal advice for this drug.

Have you considered getting a second opinion. Have you considered discussing this with the British Heart Foundation .... I think they have a telephone help line. Maybe getting advice to see a different GP and Cardiologist.

John

mav7 profile image
mav7

Since taking the Bisoporolol 15mg my pulse is faster than ever

What is your average heart rate ?

Are you taking other medications (besides anticoagulant) which may be interacting with the Bisoprolol and causing increased heart rate and fluid retention ?

Fluid retention is not listed as a side effect of Bisoprolol but definitely need to contact your GP or cardiologist to discuss your medications and dosage. 15mg of Bisoprolol seems high.

If your heart rate is above 100bpm for a continuous period would not hesitate going to A&E if unable to contact GP or cardiologist.

mayoclinic.org/drugs-supple...

Dorchen profile image
Dorchen in reply to mav7

Hi pulse is between 80 and 90 if it go higher I would be at AE as they told me to do so , thanks for your advice x

waveylines profile image
waveylines in reply to Dorchen

You have all my sympathy. Increasing Bisprolol increased my heart rate too. Infact it made me exceedingly ill & I literally had to sit up all night distracting myself as much as poss. 111 wanted me at a&e but I knew I wouldn't be seen and reckoned the stress of their waiting area for hours on end would just make me worse (That was my decision not suggesting you do the same) . I was lucky that in the morning I phone my cardiologists secretary who said he's on hol but I'll get his registrar to ring you. She did. Was brilliant & sorted me out on a different medication. My GP hasn't a clue. Really hope you manage to get access to some proper specialist proff help.

.

Dippy22 profile image
Dippy22 in reply to waveylines

My GP hasn’t a clue either and is actually quite open about it. He stays well out of anything to do with the heart issue. Actually, I’m not entirely sure he’s well informed about anything these days as he just seems to be just doing referrals to hospital departments and prescribing the meds cardiology have prescribed. 🤷‍♀️

waveylines profile image
waveylines in reply to Dippy22

Yes that's exactly what they do. They are mainly a referral centre. It makes me shudder when I get discharged back to the care of the GP because they don't manage at all. Even the annual review isn't done by a doctor but non medical qualified employee. Loads must get missed and I doubt you get optimal care unless you gen up yourself and ensure you do. I find it really scary the decline in their service. Dangerous even.

Fullofheart profile image
Fullofheart in reply to Dorchen

Hi Dorchen

I'm not a medic but an AF sufferer for 18 years.

Your heart rate is (comparatively) not that high and in my experience rate control drugs are administered to keep below 100. Below 90 ideally, I am told. So the drugs, I would say, are doing their job, in that regard. That's not to say you don't feel awful. Clearly you do. And that's what needs investigating as you wouldn't expect to feel that awful with that heart rate. I'm not saying this to minimise your experience, or suggest it's OK to feel dreadful, I'm saying this to raise the question as to why you feel so awful and why they are increasing rate control meds (when your heart rate seems low enough...again comparatively) but not addressing why you feel so unwell. It feels like your symptoms are not being fully investigated. Unless I've missed something. The fluid retention, in particular, I would suggest needs looking at. Could you ring BHF for advice? Or ask to speak to your GP again to ask what they hope the bisoprolol increase will achieve? Its a pretty hefty dose and a lot of people can't tolerate that level.

Dorchen profile image
Dorchen in reply to Fullofheart

hi it is virtually impossible to get to see a Doctor . As for my Consultant , the secretaries don’t answer the phones !! It is literally that bad here in Bristol I kid you not

I am scheduled to the practice Pharmacist let’s see if she helps

Jajarunner profile image
Jajarunner

I got left in limbo like this at start of Covid. I could barely walk. I was forced to go private and he then referred me back into NHS for an urgent cardioversion and urgent ablation a month later. It was one of the first ones to be done when they restarted them during Covid. It cost £250 then for the consultant. I know we shouldn't have to but if you can could you do that? Hope you get sorted out soon xx

Thomas45 profile image
Thomas45

I have no medical qualifications. I can only tell you of my experience with aspects of AF and the NHS. I've had AF for over 25 years. It's now permanent but mainly asymptomatic. I can't feel it unless I make an effort to feel it.Some years ago I was prescribed water retention drugs to no avail over a period of two years. Then a GP sent me to a lymphoedema clinic. The fluid retention drugs were stopped and I was instead treated for lymphoedema, wearing since then knee length made to measure compression socks.

Treatment for AF was first Amiodarone for a year. It didn't help much. Then I was put on Flecainide, starting at 100mg a day, which reduced significantly the number of episodes. Over the next 2-3 years the dose was increased to 300mg a day. Episodes of AF reduced to one or two short episodes a year.

Then on a annual appointment to see a cardiologist I was told I was in permanent AF. When I went in to permanent AF could have been at any time during the previous 12 months.

I was told to stop Flecainide and was offered a calcium channel blocker. My heart rate was just above normal. I couldn't see that taking the calcium channel blocker would have any significant affect, so asked to be returned to the care of my GPs.

I now have an annual checkup. The only medication I have is an anticoagulant, Warfarin being my choice. I self test, and send the reading by email to the arrhythmia nurse.

About five years ago I had a grumbling appendix, rang 111, and attended an out of hours GP appointment which led to my appendix being removed at a local hospital once I'd been "recoagulated" with intravenous vitamin K for 12 hours.

During the operation my heart rate rose to over 190bpm, and I was kept under anaesthetic for 3 hours after the operation had finished.

A well meaning hospital doctor prescribed Bisoprolol, 2.5 a day, despite my reminding him that I was asthmatic. My heart rate fell over the next 3 days to normal so I was discharged.

After 7 weeks of Bisoprolol the first side effect was urticaria, painful skin rashes. Saw a GP and was weaned off Bisoprolol. While being weaned off I had the second side effect, an asthmatic attack and chest pains, causing emergency admission to hospital.

I haven't seen a doctor for AF since before COVID-19 . But I have seen a GP about foot drop, two consultant orthopaedic surgeons, and an unrelated consultant gastroenterologist, and had a colonoscopy at a treatment centre owned and run by the medical group who run my local medical centre and several others. I've not needed to see my GP. I was last at the medical centre a week ago for annual blood tests. I've checked the results using the Airmid app.

What has improved my health was losing weight, so that I am now verging on normal as far as body mass index is concerned. I was shocked into losing weight by a blood test which showed I was in the Pre-diabetes range. I went on the course offered by the NHS and my recent blood test showed that I am no longer pre-diabetic. I am aged 77. If I felt I needed a second opinion I'd phone 111 for help.

DevonHubby1 profile image
DevonHubby1

Hi, can only concur with the others that suggested seeking a private consult. My wife slipped into persistent AF back in March. The GP tried upping Bisoprolol twice and then switching to an alternative with no success. GP requested urgent referral to cardiology but we were told it was a 6 month wait. We spent £157 for a private consult at our local NHS hospital. Was seen in 2 weeks, put on an alternate beta blocker which has improved wife being able to deal with the persistent AF and in process of having various tests under the NHS over the 6 weeks following the consult....delay on tests because had to be on new beta blockers for a month.....£157 well spent in our opinion.

Dippy22 profile image
Dippy22

Regards going private for a consultation please do you research. My GP(!) and I mistakenly booked me in to see a cardiologist the Nuffield only for me to find out later that he specialises in “Complex devices and cardiac failure”. Utter waste of £250, as after much back n forth, I refused the pacemaker he wanted to fit urgently. I had a gut feeling it wasn’t the right course of action for me, so I postponed it for a month (I have a healthy heart!). After some research I discovered there is swanky new Heart Clinic at the back of my local general hospital and the chap I should have paid (a further £250!) to see is working in there. He’s an EP, AFib, irregular heart rhythm, etc. expert. After reviewing my scans, ECGs, etc., he agreed with me that a pacemaker wasn’t right for me and I got an urgent referral for an ablation (next week).

Wish I’d known there were different types of cardiologists.

PS my GP was useless, he didn’t know that either. 🫤

Lenaropes profile image
Lenaropes

My hubby was on Bisoprolol. Kept lowering dose due to lethargy and heart rate as low as 42 and no seemingly good control of AFib. Switched to diltiazem and all improved. Some people can not tolerate beta blockers.

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