Beta Blockers: Hi all, I was told... - British Heart Fou...

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Beta Blockers

Tickertalker profile image
22 Replies

Hi all, I was told around a year ago that I had a thoracic aortic aneurysm that needed surgery as it was in danger of rupturing. As I knew from a blood pressure test with my local GP that my blood pressure was just a tad high, I suggested to the cardiologist that it might be prudent to give me something to lower the pressure while I was awaiting surgery. He agreed and perscribed me 5mg of Bisoprolol Fumarate beta blockers. These, I soon discovered, had some unwelcome side effects but I stuck with them as I didn't want to risk a rupture and an untimely death. I had my surgery two months ago and neither my cardiologist at my local hospital or th surgical team where the work was carried out seem in any way interested in stopping the medication. I'm not at all sure who I should talk to to get the ball rolling and have been considering just stopping or slowly cutting down on my dose. The only thing that I'm worried about is that obviously my blood pressure will rise a little. Normally not a problem but I had a stroke during surgery and think it's possible that I may be inviting complications. What would you do?

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Do not stop your bisoprolol without medical advice it can be very dangerous. If and when you are able to stop reduce it very very slowly as it can give you very bad withdrawal symptoms. Not everyone has withdrawal symptoms and you may be lucky but a lot of people do have severe withdrawal including myself and it can be a nightmare even when you have stopped altogether you can get some awful rebound.

Please talk to your doctor or consultant before trying to stop on your own

Tickertalker profile image
Tickertalker in reply to

Wow, thanks for the advice. I would never had suggested being given something to lower my blood pressure if I had known the difficulties. I didn't notice any benefits when I first started taking the things. Did they save me from a rupture? That's something I'll never know. Just what are the withdrawals like and how long do they last?

in reply to Tickertalker

I was on bisoprolol for three months and have weaned off very slowly over 8 months and now 5 weeks into the rebound. Main problems with withdrawal was sleep depravation terrible anxiety which I never had before bisoprolol and feeling very unwell most days. The rebound anxiety has been terrible with suddenly awakening very frightened for no reason at the same time most mornings of 3,30am anxiety and jitter throughout the day and for mr the worse is the continual palpitations and ectopics which I have now had for 4 weeks and not getting any better.

I have a friend who had no withdrawal or rebound at all and I hope if you are able to stop that you are one of the lucky ones with no problems.

The only thing I will say I feel much brighter and have more energy now I am not on bisoprolol.

LaceyLady profile image
LaceyLady in reply to

I’m also on Bisoprolol and reading this wish I wasn’t. Also on Flecainaide and both are orange warning! I’m having issues and will have to see my new GP

gladliz profile image
gladliz in reply to

Have you heard of Bach Rescue Remedy. It's plant based and as far as I am aware doesn't have anything in it that would cause problems. It comes in various forms including pastilles and sprays these days. I have been using it on and off for years for anxiety, driving lessons, Dental and hospital appts sort of thing. I have paroxysmal Afib and find it helps if I think heart rate is getting erratic.

in reply to gladliz

Thank you I already use Bach rescue remedy spray form and also the pastilles and they do help.

Unfortunately the rebound of bisoprolol also causes nervousness for no reason at all(wasn’t nervous or had any anxiety before I went on biso) and when that happens I can feel my heart start racing which causes palpitations and it takes a while for me to control nerves and bring heart rate down so it’s a vicious circle. Needless to say I have now been off biso for 32 days.

cjbroon profile image
cjbroon

I had the exact same condition. And prior to my repair in April last year I was on Losartan, Aspirin and Simvastatin. I was in Hospital for a month with complications requiring further surgery and then lung infections. I also had episodes of Afib. Whilst in I was put on Amiodarone for the Afib and was changed from Simvastatin to Atorvastatin. I was back in hospital a month later for a week with Pneumonia/Sepsis and again this caused Afib. They added Bisoprolol to my medication so they could wean me off the Amiodorone. I had another unknown/undiagnosed (I'm convinced it was covid)chest infection which hospitalised me again for a week in November. Again I had an irregular heartbeat. Now my heart rate has only ever been irregular or Afib when I've had an infection. Man heart rate has otherwise been perfectly normal and I've had no issues since. My resting heart rate is usually around 54,thats what it was before my surgery as well and had been for many years. Yet I can't get them to take me off the Bisoprolol. I would really like to come off it.

Tickertalker profile image
Tickertalker in reply to cjbroon

Sounds like you've had a terrible time. Me too. I had a stroke with my first operation that cost me an arm and a leg. Then I had a second operation to drain a bucket full of fluid from around my heart. Finally I was transfered to a stroke unit and then rushed back for a third operation for a suspected infection on my new valve. All in all I was in hospital for two harrowing months. I'm finally back home and, while I've turned the corner, I'm still suffering from a lot of chest pain. The joke is that it was an elective operation and I felt 100% when I walked into the hospital.

cjbroon profile image
cjbroon in reply to Tickertalker

You've also had a terrible time of it. My Op was also elective. My aneurysm was 4.9 and I was being monitored by the hospital since 2017. As I was still reasonably young 50/51 at the time of the op(I turned 51 in hospital) they felt it was best to operate as my age and fitness would give me a better chance of making a full recovery. My first op finished up taking around 10 hours. The second op was similar to yourself, fluid /blood compressing my heart. Pericardial bleeding they called it. It took 5 hours. Then the infections kicked in. I was on an antibiotic drip for around 10 hours a day for about 10 days. I remember one of the antibiotics was called Vancomysin. The consultant called it the bleach of antibiotics and I lost about a stone and a half. My readmission 4 weeks later was put down to Hospital Aquired Pneumonia. So the infection must have lingered since my discharge. I have a phone consultation this week with my Consultant and I'm going to mention the Bisoprolol to see if there's a chance of coming off it.

Tickertalker profile image
Tickertalker in reply to cjbroon

Blimey, it sounds like our experiences were almost identical. My aneurym was a little larger at 5.6cm and I also had a bicuspid valve replaced as a job lot. Like you I was given industrial quantities of antibiotics to clear up an infection. I can't remember the name but the doctor called it the Detol of antibiotics so I'm guessing it was the same stuff as you suffered. I also lost a stone and a half. (I was quite pleased about that.) I've got a consultation in a couple of weeks myself and I would be very, very interested in any advice or feedback you get about Bisoprolol. Please keep me posted on that one.

LaceyLady profile image
LaceyLady in reply to Tickertalker

‘ELECTIVE’! Beggars belief. I’m so glad you had your op. My sister didn’t, was catalog of bad medical non-treatment

cjbroon profile image
cjbroon in reply to LaceyLady

Mine was elective as my brother died in 2017 after his undiagnosed aneurysm ruptured. Mine was found when I got sent for a check afterwards. They normally wouldn't operate at 4.9 but due to my family history they decided it was the best route to take.

LaceyLady profile image
LaceyLady in reply to cjbroon

I don’t consider it elective as it’s an operation that has to be done to save life. My mum died with an aneurysm and 2 years ago my elder sister’s condition was only monitored because hers was a similar size to yours but she was a tiny woman and her husband raised this with the doctors. She died before her time. Aneurysms can be inherited, so both me and younger sister have been scanned.

MichaelJH profile image
MichaelJHHeart Star

Generally after repairing an aorta BP medication is continued to protect the repair. Beta blockers also reduce the HR (heart rate) which protect both the heat and aorta. Maybe they could try a different beta blocker?

Tickertalker profile image
Tickertalker in reply to MichaelJH

That's interesting. Obviously if they are still serving a purpose I will feel differently about continuing to take them. I must admit that I pick up little bits of information here and there and then think I'm a medical expert. Best leave it to the doctors I guess.

Don’t do it! Only seek the advice of a professional before you stop the beta blocker. If your dr doesn’t advise it seek another doctor but look at their reviews first. Don’t become your own dr that’s trouble. Trust me I know.

kingsnorth profile image
kingsnorth

Sorry you are suffering at the moment l hope you don’t have to wait too long for your op. What were your symptoms of your aneurysm please

Tickertalker profile image
Tickertalker in reply to kingsnorth

Generally speaking aneurysms don't have symptoms. Well one, if they rupture there's an 85% chance that you'll drop dead. Mine was discovered quite by chance. I certainly had a difficult time with my surgery, having a stroke was a particularly bitter pill to swallow. I remember being told , post surgery, that I could expect to live for an extra 20 years. This felt like very bad news as I could no longer walk. However I am now getting my mobility back and no longer feel so negative about my experience. There was only a 2% chance of a stroke so I was very unlucky and the last thing I would want to do is put anyone off the idea of havng surgery when it is needed.

Thanksnhs profile image
Thanksnhs

Hi I was on bisoperol for three years prior to transplant surgery, the hospital just stopped them immediately after surgery, I never really noticed, but mabe getting used to the new meds was worse!

Cliff_G profile image
Cliff_G

Hi Tickertalker, I'm glad you managed to avoid a dissection or rupture, but obviously you've been on the receiving end of the risks of preventative surgery, by the bucketfull. I may have missed it above but what age are you, where was the aneurysm (1 or more of: root, ascending, arch, descending?) and what aortic repair did you have and how extensive, and when was the first main operation?

I see you had a new AV. Bicuspid is a known risk factor for dissection, and the standard intervention diameter was 5.5 cm (I say was as it's increasingly being determined that that is too high a figure) so your 5.6 cm and bicuspid was indeed a risk, and I have no doubt (as someone who dissected at 4.5 cm) that the decision to operate was right. Mortality is not uncommon but there are more survivors of dissection now, as awareness is being raised.

In terms of continuing beta blocker, it depends not only on your BP but also on what your residual aortic status is, is there residual aneurysm downstream of the repair, do you have a known genetic risk, what was the repair. In my case I survived a dissection and was lucky enough to get a "total repair" and subsequent CTs and abdominal echos have confirmed I have no residual problems, no leaks, etc. I also tolerate(d) beta blockers badly, but I tried (with my doctor) to reduce them slowly and each time the effect was clear and I eventually got right off them. But my BP is usually comfortably within 120/80, the only thing is the heart's pumping power is still as per "normal" and not reduced as is the case on beta blockers.

But beta blockers are known to benefit in Marfans and are thought to have some benefit in non-Marfan patients, in terms of protecting the aorta from excessive growth. Also, when your aorta has been repaired it loses its expandability which is part of the pumping process of the heart-aorta combination, so heart beats are transmitted more directly into the far end of the repair, and into the main arteries coming off the arch which go up to the head.

So I am not surprised no-one has suggested coming off the bisoprolol. I think you should consider genetic testing, and also make sure your doctors tell you your residual aortic condition, and why they still have you on beta block.

Work hard on the stroke, too, it will improve, judging from those on our AD FB group who have had strokes too.

At the end of the day, it's your decision, though it's obviously sensible to listen to medical opinion and get the full risk/reward picture. Then, consider, as one post I saw elsewhere said "what was the point of you saving my life, Doc, if I can't live it?"

Tickertalker profile image
Tickertalker in reply to Cliff_G

Thanks so much for your long and considered reply Cliff and apologises for taking so long to get back to you. To answer your questions I am 66, my aneurysm was in the ascending arch and I had a replacement of the ascending aorta and proximal arch with a hemi-arch procedure. My operation was two months ago and, subsequent problems aside, I believe went very well. My bicuspid valve was replaced with a mechanical one at the same time. I'm not aware of having any other problems downstream but my discharge papers mention 'A very trivial para-prosthetic leak seen in apical chamber view'. I still have some swelling in my feet which a little worrying and I'm not sure what to do about that as raising them above my head doesn't seem to help. I did have some nasty stroke related falls soon after surgery while in hospital and hope they didn't do any internal damage. While I would dearly like to remove the beta blockers from my diet, as I was only prescribed them on request as a caution against a rupture while I was awaiting surgery, I'm a little concerned now that the inevitable rise in blood pressure could trigger a second stroke. I have been working hard on the stroke and have been improving rapidly although I still have a way to go. Some friends took me to Camber Sands at the weekend and I ran down the beach. Not bad for someone who couldn't walk a single step four weeks ago. Kind regards Nic.

Cliff_G profile image
Cliff_G

Hi Nic, no problem. The leak sounds to be at the valve, para I assume means within, in other words there's a slight leakage back through the valve. I may be wrong so check next time you speak to your docs. Many people have slight regurgitation, so I'd expect trivial to mean just that.

Swelling in the feet is not unusual, especially after such an op at our age, I am now nearly 3 years out but have only really been free of that recently, and with diuretics. The more you walk etc the better that will be as it's muscular movement in the legs returns fluids up the climb they have to do. Some will be in the tissues and not amenable quickly to raised legs. If concerned or very bad, have a word with your doc, it's a common problem they're used to.

Keep working on the stroke, you'll get there but also remember sleep research has find good sleep helps stroke recovery, as well as tge other work you're doing.

I would definitely have words with your docs re the beta blockers. Some people really are intolerant of them and can't get on with them, I'm one as well. I would suggest requesting a trial of reduced dose. I found significant changes in type of beta blocker (bisoprolol was the least worst) then in dose. I came down from 5 to 2.5, then I think 1.25, then finally off, with improvements in my general well being and physical abilities at each step. Cutting them out only made a tiny difference to my BP. Something like Spironolactone or preferably Epleronone could help both BP independent of beta blockers, and the swelling. Statins can also set you back movement-wise. You and your doctors should remember that being able to do regular exercise affects the whole body positively whereas beta blockers can stop you doing that, so for one bit of benefit you're missing out on a much wider benefit.

Good luck and let us know how you get on.

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