Terrible side effects from Bisoprol and Carvedilol, now off of medication all together.

Treatment and medication
1

Hi all, I had a paroxysmal AF episode 6 years ago and none since.   I've had terrible side effects for 6 years from Bisoprolol where I was sleeping for 13 hours a day regularly and felt like an old man.  My gp recently changed me to Carvedilol to see if that helped.  I had the opposite effect, 4-5 hours sleep a night for a fortnight.  I also had drug induced apnea and couldn't get my breath when laying flat a lot.  Other side effects to boot as well.  

I saw a different gp and I asked if I could come off of beta blockers as the side effects were ruining my quality of life. I had only had one episode of paroxysmal af 6 years ago which started off the route on beta blockers.  I had flecanide to bring my heart rate back to normal and no other treatment.  My gp has weaned me off of the Carvedilol now and said to see him in a month and to watch out for the af.  He knows I am not under a cardiologist and didn't see a need to refer me to one.  

I've been trying to do things to help, by cutting out alcohol a lot, losing weight and meditating quite a lot.  Today is my first day after being weaned off of the Carvedilol.  Does anyone have any thoughts or advice as I'm a bit worried the af may return.  I take aspirin 75 mg and Omeprazole, as had a gastric bleed because of the aspirin 5 years ago.  I know a lot of people say the aspirin isn't there to help in preventing strokes that are a result of AF.  Do you think that I should demand a referral to a cardiologist.  I'm even prepared to pay for a private consultation for my first appointment.  I have always suffered with terrible side effects and the ones I have been getting with the Carvedilol are sometimes as rare as 1 in 100 people getting these.  Thanks so much.  

2

Hi. I started with shortness of breath 3 yrs ago GPs put me on bisoprolol which improved it for 6/12 then added in ramipril and frusomide as getting short if breath again. Didn't refer me to hospital although NICE guidelines say they should. Abt 6/12 ago breathing worsened . Different Gp told me got valve leak and needed repair. Finally referred me to cardiologist. Saw him just over a month ago. Told me from echo blood tests and ecg no heart disease at all and to stop all drugs. Which I've done-gradually tapering off bisoprolol. Now feel wonderful. Gone are the exhaustion all day ,nightmares shortness of breath ,nausea and feeling horrendous. Also stopped ramipril and joints pains almost gone but got better mobility. No longer feel like I'm getting too old.

So my advice is get a referral to cardiologist either nhs ( maybe good wait I was told at least 19 weeks and it's been abt that) or private referral. At least then you'll really know if you a) need drugs b) have AF.

Good luck

3

My side effects, Feeling like an old man, breathlessness and feeling like a drunk zombie, total exhaustion, they all came as soon as I started taking Bisprolol, in addition I developed a cough when they tried me on Solotolol. Thing is, I have been off beta blockers since end of March, and all my symptoms remain, I am stuck as if I was still taking them.

So of course all my cardiologists, all the GPs at my local health centre, they all refuse to believe it can be anything to do with their drugs and so attribute my conditions to anxiety or I suspect hypochondria.

I just found this link however regarding damage to the Autonomic Nervous System, fits with all my syptoms, beta blockers act on receptors of the ANT. Whats more, read the last chapter about what damages the ANS and you will read Beta Blockers! http://www.dantest.com/dtr_ans_overview.htm

4

I am shocked at this peter.  I am so sorry that you are still getting the symptoms of the effects of these terrible, toxic (in my opinion) medications.  For the last 6 years, I just thought that I had chronic fatigue syndrome or even blamed myself for being lazy, sleeping for up to 14 hours a day.  

When I saw a young GP in August when I was too exhausted to go to work, she didn't even look at my medication and just ran blood tests.  I almost wanted the blood tests to show up diabetes (I was diagnosed pre-diabetic a year before) because I wanted to know why I felt so awful.  When it was clear I was relieved but also disappointed as wanted an answer.

It got too much to take and my quality of life was just suffering too much.  I am an amateur photographer and hadn't picked my camera up in 10 months!  When I saw the gp who put me on Carvedilol, she said it is probably the depression you had last year and told me to get up and go out for walks to wake me up as well.  She started me on the Carvedilol.

From day one, I knew something was wrong, my eyes couldn't focus, I was getting paresthesia in all my muscles and joints, I got only four hours sleep for two weeks and did feel like a sleep deprived zombie after those two weeks.  The worst was the drug induced apnea where I felt like I couldn't take enough air in.

For me again, that was the final straw and I saw yet another GP who looked stressed that day.  He didn't even look at me, he said my BP had been going up since taking Carvedilol which I know now can happen.  He didn't like that  with the Carvedilol.  It was only when I said I am not taking beta blockers any more that he said ok, we'll try you off of them and review you in a month.  Again for the umpteenth time of asking, he would not refer me to a cardiologist as I know being an ex mental health nurse, it would cost his surgery money for that referral.  

Fortunately, I have weaned off of them and things do seem to be returning to normal.  I have lost nearly two stone in weight on a low carb diet and the meditation/relaxation I use does seem to be helping my bp.  Again, so sorry that you are stuck with the symptoms.  These so called professionals won't listen to us because they use the outdated medical model of health which does not look at all the side effects that can happen just the treatment of an illness and to then put up with it.

I feel that I lost a lot of my life for 6 years on beta blockers.  To end my message, my wife was put on Atenolol for high blood pressure and when we were stopping overnight in Manchester, her respiration rate was as low as 6 respirations a minute.  I was almost too frightened to let her sleep that night.  An out of hours GP back in Wakefield, when we returned, took her off of them and asked why she had not had a medication review by the GP !  Needless to say her respiration rate is fine now on Amlodopine and Candesartan.  I hope things work out for you and thank you for your information on this article.

5

Thanks Michael. I bought one of those overnight oxi-meters and found that for half the night, my blood oxygen is 85%, it should be 95 to 100, so I managed to get one GP to book me for a sleep apnea test end Jam. I see one of my cardiologists 12th December, so will put this new found evidence to him, but doubtless he will come up with the old, "you spend to much time on the internet, its just causing you anxiety" fob off. 

6

Peter, thanks for the reply, like you I do quite a lot of digging on the internet about medications.  You may find these interesting.:-

https://www.medscape.com/viewarticle/578687  ;  this is very new and ties in with your article.

https://www.medschat.com/Discuss/Coreg/  ; I know you haven't been on Carvedilol/Coreg but I found this american forum about it and the comments make for very interesting reading.  My gp just said that I was prone to side effects.  Good luck with the cardiologist and hope the symptoms improve.

7

Hi Michael and thanks, but the first link came up as page not found, it takes me to the Medscape site, any pointers how I can find it from there?

8

I didn't realise Peter and this has happened to me.  I found if you type in google:  medscape followed by a space, followed by article 578687 .  This should bring up the page on the google list and you can follow the link from there.

all the best, Mike.

9

Hi, Michael

In the part where you say that your wife had a respiration rate around 6 on Atenolol, I had exactly the same problem on Bisoprolol and Nebivolol, but docs didn't believe me.

They would said that it is not possible, that it is a tiny dose etc.

I was feeling all the time as my lungs are "low on batteries" and as if they are breathing slower and slower.

I had to "manually" breathe and yell at my lungs: What are you doing? Why aren't you breathing? Is something broken in me?

When I have quit BBs, of course that my breathing rate returned to normal...

About your weaning off, be careful.

Majority of people get an elevated heart rate, some arrhytmias etc.

Be ready to call your doc if something happens.

Also, there is a chance that you will get a rebound AF.

In short:

If you never took drugs, let's say that you would have an AF episode once in 5 years.

Now, when you were taking drugs, there is a chance that you will get shorter AF episodes right away (which you maybe wouldn't get if you weren't in a withdrawal), because your heart will need to find their "old rhythms".

I don't want to be a doc, but if you'll have only minor problems or short episodes during a withdrawal, maybe you should try to move forward without drugs.

When I was quitting BBs, I had lots of strange rhythms, palpitations, elevated HR etc.

Now, 1 year off drugs, elevated HR is gone, palpitations are gone.

If you get my point? During a withdrawal, your situation may look even way worse than it really is.

How long have you been weaning off?

Because docs usually say: do it for 2-3-4 weeks and you will be fine.

Which is often not true and lots of people need Months to wean off, especially if you have been taking a drug for a few years.

2-3-4 weeks of weaning off is ok if you have been taking a drug for 2-3-6 Months.

If you have been on it for a few years, you will usually need more time to slowly wean off.

Good luck