Beta Blockers - intolerance?

[Rosamoyesii]

seven years ago I had my first episode of afib. Was put on bisoprolol fumarate. Took this for one whole year but reacted badly since I felt as though I was walking through treacle. Walking was cumbersome and very slow. Kept having to sit down every few yards. Moved to live in another area and new doctor said the drug didn’t suit me and transferred me to propranolol 20mg divided morning and evening. Worked a charm and restored a sense of normality.

Fast forward to present: had my second afib event very end of January this year. Went to A and E where, after a raft of tests, results pronounced palpitations. Doctorvthere prescribed bisoprolol fumarate. Told him about my past experience. However, with persuasion, I reluctantly agreed to give it another go - 5mg twice daily. Plus Apixaban 5mg twice daily - later reduced to 2.5mg by my own doctor - age related.

Bad reaction once again - had every side effect in the book, including swollen legs and face and restricted urine output, although was drinking plenty water and decaf tea. Very bad effect on my legs. Aching thighs but painful legs below knees, as if filled with lead. Unable to walk properly.

Back to my own doctor who suggested trying atenolol. What a disaster! Much worse than bisop fumarate.

I reiterated that I’d had a repetition of my earlier side effects with this latest bisop fumarate, but although my language of communication was English, said doctor seemed incapable of listening to a simple and clear description of the more recent side effects.

On commencing atenolol, I had the same side effects only more so, bad tremors, together with sweats in the day, plus a seriously painful midriff for approximately half an Hour second morning of ingesting the new drug. This cleared, but I returned to my own doctor to report outcome and who thereafter suggested- try digoxin. (Was he deaf!)

This was on a Friday. So I spent the weekend thoroughly researching said drug. By Monday, having calmly avoided blowing a gasket at the information provided, I left a polite message at doctors’ reception on Monday morning, imparting information that I didn’t wish to proceed with digoxin and requested that I return to my original beta blocker propranolol.

eventually I re-started propranolol, but instead of 10mg twice daily was told try 20mg twice daily. I complied. Unfortunately the side effects of the previous b blockers have not disappeared and are just as bad as bisop fumarate originally. I don’t have the bad tremor or shakes which atenolol induced. Fortunately that has cleared, but I do seem to have a compilation of the two beta blockers, ie achy thighs, heavy aching legs below the knee, sweats, tiredness like no other, and as with the other beta blockers, the inability to walk is gross. I crawl when out at the supermarket. People offer to help as I hang on to the shopping trolley.

Another thing which I notice is that I wake in the morning full of nerves and tension. Jittery, and it’s in me all day. My eyes feel swollen. They are red rimmed and watery at times. As an extra thrown in, I have a patch about the size of my palm, of small itchy spots together with itchy red bumps on the soft skin by my right collar bone.

sorry it’s long winded, but I have tried to précis it yet retain the important facts.

the one big worry is that of my inability to walk normally. I have a scoliosis of the right shoulder blade area, so I walk doubly bent, along with this new crawling gait.

thank you in advance of any advice.

[mjames1]

Ask for a trial on the calcium channel blocker, Diltiazem. Serves the same function as beta blockers, but many of us, including myself, tolerate it a lot better. In your case, I wouldn't just ask, I would insist, given your history with beta blockers. If that doesn't work, find a more sympathetic doctor who will work with you.

Jim

[Rosamoyesii in reply to mjames1]

diltiazem has been mentioned again on this post and I shall certainly suggest the option. I have an appointment with my doctor this pm (made a fortnight ago!) so I shall go fully armed with all the information related by this most supportive site.

Thank you so much for your advice and for writing. Rosa.

[Peony4575]

I am intolerant beta blockers had similar side effects to you . Now on my notes do not give beta blockers. My episodes so far have been two years apart ( waiting for an ablation). I said to the consultant”why am I going to take a drug that makes me feel rubbish every day for something that happens every two years” She couldn’t come up with an answer so am only Edoxaban . Most doctors have stopped thinking and are protocol driven . One size doesn’t fit all however

[CDreamer in reply to Peony4575]

Agree! Beta blockers especially are such a Marmite drug.

[Rosamoyesii in reply to CDreamer]

You made me laugh! But why is common sense sometimes over-ridden. Thanks you for replying. Rosa.

[Rosamoyesii in reply to Peony4575]

most doctors are protocol driven and have stopped thinking! Ha ha! Thank goodness for a sense of humour.

I shall certainly use your question regarding why am I plying myself daily with meds which reduce the quality of life! Can’t wait to see their face!

Thank you so much for writing

As an aside: I had a thought when composing my piece last night that, if there was an educational institute which offered a course on swearability, then I would apply for it and I know beyond doubt that I would be awarded the degree - first class - and with Honours!

[Frillette]

Yes, I second mjames1 suggestion re Diltiazem. Same thing happened to me with Bisoprolol, six months of misery ‘til change to Diltiazem. Hope you get it all sorted soon.

[Rosamoyesii in reply to Frillette]

Thank you Frillette. Makes me more confident to speak out. Rosa.

[Ducky2003]

Same as others, 3 months of misery on Bisoprolol but no problems on Diltiazem.

[Rosamoyesii in reply to Ducky2003]

Thank you for replying. This good support makes me feel as if I’m not the only person on the planet. Rosa.

[Rosamoyesii in reply to Rosamoyesii]

Well you’ve hit the nail on the head. So many ‘untried’ situations seem not to have been put forward in my case. Apart from the initial 24 hour Holter monitor seven years ago, I have not had a monitor test, despite suggesting it. I haven’t seen any other related specialist

When in A and E recently, the doctor told me to book an appointment to have an echo cardiagram which would show how the chambers of the heart were working. I took this information back to my own doctor and relayed it twice. Somehow it just seemed to be waived away. His comments were that my condition was PAF and ‘fortunately not too bad’.

Another frightening episode was when I had the serious pain in my midriff, I phoned the practice to ask to speak to a doctor that day for advice. Receptionist took a note of my symptoms. Almost an hour later, I received a call from the receptionist that I was to ‘stop the pill and make appointment to see my own doctor’.

I’m fed up being messed around somewhat, but the positive news is that it toughens you up. I used to be bird-mouthed, but I’ve discovered my med centre don’t seem to like it when I argue the toss with a degree of respect. I’m fairly long in the tooth but like to think I have most of my marbles. Your note boosts my confidence that i am on the right path.

Thank you for all and for getting in touch.

Rosa.

[Ducky2003 in reply to Rosamoyesii]

I think Bisoprolol is a Marmite thing........ you either get on with it or you don't.My pharmacist explained that it attaches to receptors in the lungs as well as the heart, so that's why you get out of breath with it.

Hope you get sorted.

[Rosamoyesii in reply to Ducky2003]

Thank you. That is really useful information to have. Rosa.

[CDreamer]

Oh I feel so much for you - having been through the exact same thing and had a stand up row with a cardiologist on a cardiac ward as I refused to take ANY heart rate drugs because of the extreme affects I suffered.

There are many who just cannot tolerate these drugs which harm and I just cannot understand why we are not listened to or believed! I then found a most compassionate and lovely specialist who did listen and did believe and supported me. The answer for me was a CRT pacemaker, I now take no heart drugs and my AF burden has reduced from about 75% prior to implant to 2% some 8 years later.

I cannot tell you how difficult it is to come off beta blockers with all of the withdrawal symptoms such as the jitters but persist, once completely off you will start to feel better. Find an understanding specialist who will support you but hold firm. Somewhere back in about 2014 I wrote such a post as you saying that when the ‘medicine’ is worse than the disease then why would we continue? Even with a high heart rate when in AF I have never regretted my decision and eventually was proved correct as I had an underlying condition which heart drugs exacerbated. Trust your body, it is saying you cannot tolerate these drugs. I also have a Red Alert on my medical files to never be given these drugs.

Oh you have just taken me right back to that place and I am SO grateful that I persisted and stood up to the bully who henceforth refused to treat me because I had refused their solution.

[Rosamoyesii in reply to CDreamer]

I do apologise as my reply is in the thread but I’ve misplaced it. Thank you for your detailed and comprehensive report. It is very much appreciated. Rosa.

[Drone01]

The fundamental question is why do you need rate control at all when not in AF? For some of us taking betablockers all the time is worse than putting up with occasional sporadic episodes of AF.

[Rosamoyesii in reply to Drone01]

That’s exactly what my son has been saying for months. Thank you so much for your reply. Rosa.

[CDreamer in reply to Rosamoyesii]

You have a wise son!

[Rosamoyesii in reply to CDreamer]

Thank you! 😉 Rosa.

[Vonnegut]

I’m not surprised such a high dose of Bisoprolol was a problem for you! The lowest dose of 1.25mg proved too much for me to take daily as it brought my heart rate down too low and I was taken off it after just three days! Eventually doctors might realise that we are all different and start treating us as individuals rather than by ticking boxes! Good luck finding a sensible practitioner who will work with you at finding what works for you. I was fortunate in that way as I have recorded here before and now Flecainide taken regularly has enabled me to be virtually a fib free for several years now.

[Rosamoyesii in reply to Vonnegut]

All extremely interesting. I’ve learned more today on my own condition than I have done for years. As you say, why don’t doctors treat us like intelligent individuals. Surely they must realise that if a certain med disagrees with us, there must be an explanation.

Thank you so much for writing. Rosa.

[Vonnegut in reply to Rosamoyesii]

And I’ve now corrected the predictive text that appeared to have changed the “ticking” that I wrote to “thinking” which doesn’t make any sense before boxes!

[Buffafly]

Cardiologists get very sulky if you won’t try bisoprolol so I eventually gave in although even my GP said I shouldn’t take it (asthmatic). After a few days on the lowest dose I had an episode of bronchospasm, thought I was going to die. Now noted as ‘beta blockers unsuitable’, slight understatement 🤔 I have always taken diltiazem with few problems.

[Rosamoyesii in reply to Buffafly]

What a horrendous situation you went through. Glad you are all right now.

I did notice when I described my original intolerance to bisoprolol that I was given a look which can only be described as askance. In other words he thought I was imagining things. For a whole year. NEVER!!!!.

Thank you for the diltiazam suggestion. That I will explore.

Many thanks for writing. Rosa.

[Vonnegut]

Gosh! That is much worse than my experience! Poor you! Glad you have found a suitable drug for you! And electrophysiologists are the guys who know about our problem as it’s an intermittent electrical fault, rather than an ordinary cardiologists who are the plumbers and deal with “clogging in the pipes” etc.

[Rosamoyesii in reply to Vonnegut]

I’m learning all the time. Your information is really interesting. At present I’m seeing my own doctor and the feeling I’m getting (no disrespect to all medical profession) is that if they can fix matters for you, that’s fine. But those of us who need that little bit more can be palmed off unless you persist.

I haven’t yet found the magic pill, but I’ve at last managed to achieve a start today with enquiries being made to a cardiologist by my med people - minus my presence! - and I’m to have feed-back by phone later in the week.

Thank you for your information. Rosa

[shiftcolors]

I was first on metoprolol succ 25 mg twice a day. Fast forward to new heart Doctor who told me splitting morning/evening was unnecessary and put me on pill with time release 50 mg once per day. That’s been a better fit for me. Only consistent side effect which may not even be attributable to this pill is a cough I’ve had for 3 years now. But I can’t be sure it’s this pill and not another I take or perhaps even sinus related. Tylenol sinus pills relieve the coughing symptoms if they become intolerable and I keep cough drops in my pocket.

[Rosamoyesii in reply to shiftcolors]

Interesting how we all differ. I’m learning fast. Thank you. Rosa.

[JOY2THEWORLD49 in reply to shiftcolors]

Hi

A cough taking Metopolol. It should be stopped. It is not for asthmatics or coughers.

I was taken off an Ace med due to a cough.

Have you AF?

You should be under a Cardiologist if you have AF. Why are you taking a BB Beta Blocker hypertension?

Both a CCB and a BB should be trialed. Separately.

I found with me CCB for control Heart Rate and BB for hypertension.

GPS cannot prescribe CCB.

cheri Joy 76. (NZ)

[Rosamoyesii in reply to JOY2THEWORLD49]

Well quite frankly, your guess is as good as mine. I have PAF. I just feel I’m going around in circles, hence my delving into this amazing and helpful forum from tried and tested members, whose advice is invaluable. Thank you again. Rosa.

[FitnessGotFibbed]

When I see docs prescribing beta blockers, I always wonder if the patient had rapid, normal, or slow ventricular rate with afib, and what is their rhr and bp.I was prescribed a beta blocker when I 1st got a diagnosis. It made me feel like the walking dead. Why? Because my rhr is low and ventricular rate during afib alwas low. It also triggered arrhythmia. I call that malpractice.

There's a guy who.was prescribed a daily beta blocker for occasional tachycardia. On the medication, his rate was 35! The docs name was Dr. Acula.

Taking a heart rate and bp readings into your notebook several times a day can help the docs determine the right treatment. Very much encourage all with suspected arrhythmia to collect data.

[ForensicFairy in reply to FitnessGotFibbed]

Some beta blockers are also cardio protective. We’re not all put on them to just ‘slow the rate’. I’m on Carvedilol and another ‘non’ beta blocker because of the cardio protective qualities. My cardiologist is trying to prevent structural damage to my heart. I’m on other drugs for other reasons as well, but people should understand that beta blockers are not just rate reducers. It’s maddening to hear people talk about them as rate reducers. They’re so much more than this and it’s why they’re so commonly prescribed.

[Buffafly in reply to ForensicFairy]

I understand why beta blockers are ‘good’ but they just make some people worse and can be dangerous to a few. I am rather cynical and suspect one reason why beta blockers have been so popular is because they have been prescribed for stress and doctors have been quick to dismiss women with palpitations as having anxiety rather than checking if they have an actual arrhythmia. I read a book by a cardiologist covering the history of cardiac treatment and though he didn’t mention atrial fibrillation once he talked a lot about ventricular fibrillation which he considered was affected by stress so a prescription for beta blockers may also be to protect against cardiac arrest.

[ForensicFairy in reply to Buffafly]

That’s interesting. Vfib is deadly. Without immediate defibrillation, around 90% of people with Vfib will die as they go into cardiac arrest. My brother has arrested twice because of it. It’s not like AF where you can actually live with it and carry on with your life.

I’ve never heard of it being caused by stress but it may be chronic stress he was referring to which as we all know, affects us negatively in multiple ways.

[Rosamoyesii in reply to ForensicFairy]

That’s something I didn’t know and will question the medics at my local surgery who seem to be clutching at straws in order to think outside the box where I am concerned. I keep telling them that I have a high sensitivity rate to all kinds of things. Thank you for the information. Rosa.

[ForensicFairy in reply to Rosamoyesii]

I only learnt this accidentally. Like most people, the drugs I’m on make me feel fatigued, and they affect my breathing. As I started initially only on a beta blocker I’d always thought it was this. Recently I had my drug count increased to 5 different medications and I queried the purpose of each and if I was on all these other drugs and my heart rate was behaving itself, why did I need to be on the beta blocker.

My cardiologist went through each one and explained its importance in my treatment and explained that two of the drugs I’m on, Carvedilol and candesartan, have very good cardio protective qualities. I also have coronary artery spasms and beta blockers can adversely affect this, but because of the cardio protective mechanisms, my cardiologist believes it is imperative for me to take both drugs, and he’s introduced two other drugs to stop the spasms - imgur, amlodipine. I’m also on eliquis.

[Rosamoyesii in reply to ForensicFairy]

Thank you for all your in-depth information. I’m so much better informed than this time yesterday and I can’t express enough my gratitude to all those members on this forum who took time to reply. Rosa.

[Jishuang44]

I have had a lot of drug side effects over the years but Carvedilol has been fine for me and I’m on a big dose now. Has your cardiologist ever suggested that as an option?

[Rosamoyesii in reply to Jishuang44]

I haven’t ever been recommended an appointment sigh a cardiologist. I’ve only ever had visits to my GP. !!

Thank you for your information. As a fellow allergy sufferer, will certainly follow it up. Rosa.

[babs1234]

poor you. Sounds very like me, I don’t tolerate medication well at all. I stopped the Bisoprolol and now use it as PIP. Find it’s much better than taking it constantly especially if your episodes are so few and far between

[Rosamoyesii in reply to babs1234]

That point has been touched on to me recently and since you are currently finding it works, I shall follow that advice. Many thanks for writing. Rosa.

[Pvcsurvivor]

Diltiazem has been great for me.I have been taking it for 3 years with no issues.

[Rosamoyesii in reply to Pvcsurvivor]

Not sure about diltiazem so again I shall add it to my list of recommendations to explore. Glad it’s working for you. Thank you for writing. Rosa.

[Alemo27 in reply to Pvcsurvivor]

Do you have PAF . I believe it describes similar side effect as Bisoprolol.

But sure, we A-fibers are all different !!

[Rosamoyesii in reply to Alemo27]

My doctor described my condition as PAF and commented - but fortunately it’s not too bad! And yes I agree we’re all different. Thank you for writing. Rosa.

[JOY2THEWORLD49]

Hi

You don't say why beta blocker - Rapid heart beat, high BP or both.

First line since 2017 is to trial separately Beta Blocker and Calcium Channel Blocker.

You have not had this done - remembering nor did I.

I have had to wait 2 years 3 months since Stroke Embolic, AF rapid and Persistent and Papillary Thyroid Cancer.

Meanwhile with Metopolol on 186 avg Day with no exertion (breathless) and on my normal 47 avg bpm WITH 2 sec PAUSES, Bisoprolol 156 no breathless or pauses. I was left under the Hospital Heart Specialist.

Until a 80s Locum Dr advised me to go Private to a reputable Heart Specialist who earlier worked at the Hospital.

He introduced CCB Diltiazem. 180 1/2 dose too high. I've been on 120 CD 3 years 5 months.

Bisoprolol dropped as low BP.

CCB worked within 2 hours taking my rapid H/Rate from the Bisoprolol of 156 to 51! showing 180mg CD was too high.

An ECHO needs to be done to assess which CCB.

Why haven't your cardiologist NOT GP used a trial of CCB.

You need to talk H/Rate amd your BP. With each med and then change 24hr Heart Monitors are best.

Without Bisoprolol my vitals are

H/Rate Day ar rest 79-80s. Night 47avg bpm

BP 130--79

cheri JOY. 76. (NZ)

[Rosamoyesii in reply to JOY2THEWORLD49]

Thank you for writing and I shall try to follow your journey as best as I can.

Firstly I don’t have a cardiologist. Only ever been treated by my GP who has always been very kind and agreeable. I just want him to listen to me when necessary.

My BP has always been normal and my heart rate is usually 70-80s with normal working around. Higher with exertion. In 60’s when relaxed, and the resting rate overnight is 58-62 average. I haven’t had a reading this week but will pursue.

When I had my first event 7 years ago it was 155 bpm. My recent event in January was briefly 200 bpm quickly settling to 140 bpm.

I don’t want to take any med which is used for high BP, as this alone can upset the system to being sluggish. Why reduce BP when it’s all right. Rosa go

[JOY2THEWORLD49 in reply to Rosamoyesii]

Hi

My point.

Why are you on a Beta Blocker if not to control your BP or H/Rate.

H/Rate at 200 needs control.

A CCB Calcium Channel Blocker may help you as PIP Pill on Pocket. 30, 50, etc Diltiazem.

Are you having a BB for anxiety?

Regardless by-pass the GP for high H/Rate and insist on a H/Specialist. Again I restate a GP cannot prescribe a CCB!

Please listen. Also there are other types of blockers. Cardiologists specialise in hearts GPs don't.

They will make sure that you have an ECG, ECHO and Heart Monitor.

Then they can assess your heart for rapid H/Rate which can do damage to your heart. You want that don't you.

I demanded to have a heart specialist.

When you say 'normal BP and H/Rate' when before or after taking meds.

cheri JOY

[CDreamer in reply to JOY2THEWORLD49]

Joy - what you need to take on board is that different health systems treat very differently and my EP has always been very happy for no rate control as long as my HR didn’t exceed 200 - and I asked specifically. Why take toxic drugs every day when your HR is within range and you only very occasionally have episodes of out of normal range HR? Makes no sense whatsoever to me.

[Rosamoyesii in reply to CDreamer]

In your reply to CD Dreamer, you’ve said it all. My thinking exactly! Rosa.

[JOY2THEWORLD49 in reply to CDreamer]

Hi

But I am rapid h/rate persistently.

So because my 'normal' h/rate is 47 avg Night taking Diltiazem early morning I've found it will take it down to 80 and then late afternoon 80s. Then by evening especially when I'm asleep 47 it is.

I would try PIP CCB as 30mg or 60mg or 80mg. It worked on me very dramatically.

I say take the least dose as possible.

I've been on diltiazem 120 CD 3 years 5 months. Dropping the Bisoprolol had raised my h/rate from 60s to 80s.

I would need to take 120mg x twice a day if my heart rate was the same as day.

But for some our Pharmac stopped stocking the lower doses. One cannot 1/2 a capsule but I know Drs can demand a patient's requirement.

After reducing and stopping Bisoprolol I no longer need afternon sleeps. So great.

BP went too low. And it did also on course taken from 2008 - 2010. No AF then.

cheri JOY

[JOY2THEWORLD49 in reply to CDreamer]

Your EP said h/Rate 200 was OK. Um depends how long.

I would be sweating uncontrollable and unable to exert myself. I'd be a zombie!

My learning is that control - yes below 100 of H/Rate is top importance.

The correcting PIP would be relied on to work.

Pre operation I would have the anaethetist say " If your h/rate at rest is over 100 we will not operation."

That was January 2022. Lucky that I was introduced to CCB Diltiazem in December2021 by the new introduced private h/specialist.

Otherwise the last 2 ops - Johnson & Johnson Mesh kit removed, Right shoulder repaired could not have been done when the mesh was impacted on my internal organs.

I had 2 surgeons and 2 anaesthetists in the operating room in Feb 2020 during my Thyroidectomy - Papillary Thyroid Cancer.

A rapid H/rate means serious AF.

cheri JOY

[Rosamoyesii in reply to JOY2THEWORLD49]

Thank you Joy for all your helpful posts. Rosa.

[Auriculaire]

10mg Bisoprolol is a very hefty dose. No wonder you felt so ill. If your episodes are so infrequent why take a drug that ruins your QOL. Why not just take as PIP when an episode strikes? Women seem to do a lot worse with beta blockers than men. I suspect that the older ones were not trialled on women as they were introduced before women were included in clinical trials. Women often react differently to drugs and it has been found recently that because of this difference the standard dosing for some drugs is actually overdosing women.

[Rosamoyesii in reply to Auriculaire]

I am fast coming to the conclusion that a PIP would be the way forward and agree so much with your helpful note. I actually suggested a PIP to my own doctor two weeks ago! It was circumnavigated neatly by the suggestion of trying digoxin- which I refused, after due research.

Your surmising of the situation is very much in line with my own thinking, but it would appear that in ‘trying to help’ a particular situation, doctors slip into compartmentalised thinking which cloud more free thinking. ‘Does this person actually require a different approach to the complaint’. Like yourself, I am now finding that out. ‘Why fix it when it’s not broke!’

Thank you so much for writing. Rosa

[Auriculaire]

I love your name. Sadly that rose seems to have gone out of fashion!

[Rosamoyesii in reply to Auriculaire]

😉

[Downsell]

Ow my love uou have been through it, but I know what your talking about with all the side affects, I've been on these bisoprolol and apaxaban for 6vweeks, and my head is not my own, shaky body and legs, anxiety, feeling sick, feeling I can't be myself anymore, I've started to ween myself off these tablets and doing it vert slowly, halfed my medication told doctor, now I've quartered them down every day and the next week take them every other day, I need to feel.mtself again. I ysed to ho to the gym twice a week, but I didn't and couldn't do anything. But now I'm getting somewhere now I've reduced my medication x these tablets are not doing me any good x hopefully yoy can feel better soon hun what ever you decide the way your going 👍