Beta blocker/Bisoprolol withdrawal and breathlessness

Hi Sarah,

I too was on Bisoprolol.  Just hated it.  My heart rate was very low. afelt like everything was in slow motion.

My blood pressure was low also, and I was also taking blood pressure meds.

My hands and especially my feet were freezing all the time.  I just could not get up from the sofa. So drained.

Then I opted for an ablation and the specialist said that I was to stop the Biso   6 days before ablation. I asked him if that was okay.  He said it was just fine.  But it was not fine.   I had such withdrawls. I wouled never just stop it again.  I did not realize this was withdrawls at the time.   So I went on Klonopin.   If I had only known that the withdrawls were from the biso at the time, maybe I would not be in the position now. I am weaning off the Klon and has been a nightmare.

Google withdrawls from Biso. 

You can get an idea what people go through.  Why doctors say it is fine to just come off I do not understand  

, So,if you always felt well even with 30% irregular heart beat, why would you take any medicine at all? Just to make sure that everything looks good in the doctors office? Doctors are not God. And ultimately you are responsible for your own health.  Now, regarding your pins and needles feeling ( if you haven't had it before) is the direct result of the meds. They mess up your peripheral circulation, so that your blood doesn't bring enough oxygen to your limbs. Your vessels are starving. Also, heart beat around 34 is no good. Again, better blockers will do that. However, since your heart is working at half strength, your whole body will do the same. There's simply not enough "life" in your whole body. You are being slowed down by the drugs. Now, constant yawning and wanting to sleep is your body's natural reaction to the interference with your circulatory system. How to get out? The way out from this situation is  going back  through the same door you came from: weaning, step- by-step. But if you heart beat it that slow you might consider just quitting it. Read this blog about how to wean/quit properly. Good luck.

Hi and many thanks for the replies. Denys you make such sense. I am responsible for my own health and so I am listening to my body and my body is not happy on these tablets. I am now coming off them. As for the issues with my heart - the MRI showed enlargement of both sides and thickening of tissue, which may be why I have an irregular heart beat. However I have always felt well previously, so I think I will stay med free and wait for my next scan in 12 months to check if there is any deterioration, and if so rethink the meds then and try an alternative if necessary. Thanks again.

Now, regarding the hypertrophy ( thickening) of your heart there can be different reasons. There's a condition called athlete's heart and is considered to be normal. That's pretty much when an athlete overworks his heart. Remember, heart is a muscle like any other and can be overloaded. If that happens then it tries to help body get required circulation caused by overexertion and that's what makes it grow. All you need to do is just decrease the load and it should go back to normal. It's like a bodybuilder who stops pumping iron, he starts losing his muscle mass. However,  the problems can also be the increased BP, where your heart doesn't have enough rest and is working in a more tense mode. That can be the case when your circulatory system is having difficulty pushing the blood to an organ. There might be a problem there and it makes the heart to be in a " pushy" mode. Usually, that's a secondary problem created by something else. I don't know whichever is the case with you, but if I were you I would go organ by organ and definitely keep an eye on MRI.   Again, just be careful coming off of beta blockers. 

Hi Peter,

When you stopped the BB in April, did you wean off them or just stop completely?

I was told to stop the Bisoprolol completely cold turkey five days before an appointment for an EP study. Trouble is, after 3 days I went into Ventricular Tachycardia and an ambulance ride to spend the weekend in hospital where they pumped me full of massive amounts of Bisoprolol, even though I said I had to be clear of it. So I then went cold turkey a second time, though of course not long enough to get it out of my system so my EP study was a waste of time as the Bisoprolol prevented them inducing VT.

They then put me on Solotolol Beta Blocker, this gave me such a violent cough that my GP told me to stop taking it, a third time cold turkey.

After that I would then go into VT every single day but it went when I went to bed so wasnt bothered about it, not knowing how dangerous it was until the last 12 hour episode that took me back into hospital where they cured the VT with an ablation.    

What kind of withdrawls did you get coming off cold turkey.?

I do not understand why these doctors think it is okay to just stop BB.

I took them from Feb /16   until 6 days prior to my CANCELLED ablation May 31/16. It was resceduled for June 22/16. So I just stayed off the BB's.  From about the time of the cancelled ablation I started extreme anxiety and was put on Clonezepan. It  is obvious that this was BB withdrawl, but had not idea at that time

When I went for the ablation June 22/16, the Ep specialist completed the study but could not find the area.  So it was unsuccessful

So here I am weaning off the Clonezepan in order to have another ablation.  Weaning has been a night mare.    Just like when I went cold turkey with the BB's

I have gone on other forums with so many people that have either gone cold turkey or do a slow wean and they go through hell with it

Never again will I take this crap.

 Btw, I was told I have AVNRT

  

In my opinion, the only symptom I suffered was that every day I would go into Ventricular Tachycardia whereas before I first took BBs I would just get isolated runs of a few ectopic beats. That is the warning that is given about not weaning off, that it can make your heart worst, and I think that happened to me. The other thing I still have, is that my heart beat is now generally much higher than it ever was and it keeps changing from being quite slow, 64 when walking one minute, then suddenly over 100, at one point recently just sitting down my heart beat was 147.

As for my earlier post, in other aspects like my brain fog-drunk feeling, and my breathlessness, I still feel like I am on BBs so dont know if this is a result of having not weaned off them?

Peter, when I was weaning off from Beta Blockers (I also had breathing problems like you all the time), for the last couple of months while weaning, I was taking only "dust" (extremely small amounts like 0,05 Mg or even smaller).

But I was still having breathing problems from time to time.

And even when I have quit completely, even 4-5 Months later, I had occasionally severe breathing problems, as explained above, as my lungs have forgot to breathe.

I am now 10 Months off drugs and I am better, but still not 100% perfect.

I wanted to say, if you are clean only for 4 Months, your body still has a lot of drug stored in your organs and brain.

If you feel equally as bad as on drugs, then something is strange.

But if you feel even slightly better now than on drugs, then there IS some improvement.

And give it some time.

For example, if you felt 100% bad on beta blockers and if you feel 80% bad today (4 Months off drugs), then you will be at 60% or similar in 3-4 Months etc.

Maybe your body needs more time.

But as long as you are improving even a little, there is a hope that it will be better over time.

Good luck

 

If anything Bob, I feel as if I am getting worst, well some days I feel better but other days worst.Just a couple of weeks ago I was in tears feeling I was suffocating and would die alone. I am wondering if I have a damaged Autonomic Nervous System as I have a dry wheeze cough now since April that the doctor gave me an asthma inhaler for, but I read the ANS can constrict and expand your airways, also would explain why I have to breathe deliberately, I have the brain fog, the fatigue and I also feel permanently numb in the back of my neck.

Fortunately I have met a cardiologist who admits that whilst rare, BBs can have a lasting effect though he would rather blame it on the anxiety I do not have, but at least he has arranged nore tests, a lung function test next Friday. But it is all so slow, by the beginning of March I will lose my job if not better.

About anxiety, since during a withdrawal all of us have anxiety (a natural process), and anxiety can cause breathing problems.

In short, while on drugs, you had breathing problems due to BB's side effects.

Now you can have a somewhat different breathing problems (a fear that you will suffocate) which sounds a lot like witdrawal's anxiety.

(I had a fear during a withdrawal while I was eating and whenever I felt a tiny part of food stuck in my throat: omg, I am going to die in 2 minutes. But you see, those were crazy exagerrated fears coming from withdrawal's anxiety.

And right away when I would start to be afraid that something is stuck in my throat, my heart rate would jump, my blood pressure would jump, my anxiety would jump through the roof, I would start to have breathing problems, dizziness, my muscles in abdomen around heart, lungs and neck would become tense etc.

A classical anxiety.

I am fine now, but you see, those were crazy fears caused by a withdrawal from Beta Blockers).

Either way, whether your breathing problems are caused by BB's or anxiety from a withdrawal, it will be better with each new Month.

Try to relax and write a diary, for example:

Today, Day 102 off drugs: breathing was bad 10/10 today and it lasted for 8 hours.

Day 103: Slightly better

Day 104: xx

later... Day 120: breathing was 6/10 bad today. I felt almost normal in the afternoon

Day 140: breathing problems 4/10, I felt normal in the afternoon and evening. I was able to walk for 10 Minutes.

This way without a diary, you may think that you feel equally as bad all the time.

If you will write a diary, you will both see changes in a more objective way (through diary), plus you will be more relaxed since you will see that there is a slight progress (again, while you will check your progress in a diary).

So, please, give it a try and try to write (in numbers and words) how bad and for how long do you feel each day.

Then after 10-20-30 days try to look back on first pages of a diary and see whether there is some improvement.

Don't expect wonders, but even a small improvement means that you are slowly getting better.

It is irrelevant whether it will take 2 Months or 2 years (ok, it is not totally irrelevant, but you get my point). As long as you are slowly improving, there is a hope that you will be fine and normal again in 1-2 years.

Please, relax and try with a diary for at least 30 days. 

Hi Peter,

Just was wondering how you are doing now

Hi, well 29 days ago I got my cardiologist to listen to me and admit he agreed with me that Beta Blockers have done something to my Autonomic Nervous System, but I rang my GP surgery yesterday and they still haven't received a letter from him re my referral to a neurologist. 

I was also seen by a psychiatrist, she said no way do I have any anxiety, she said she would write to my GP telling them to sort me out and stop fobbing me off.

I am under two hospitals regarding my heart, a couple of weeks back I saw a cardiologist at the other hospital, she too wants me referred to a neurologist, so that is now three separate NHS people, all agreeing that its worth investigating that BBs have harmed my Nervous System, I just have to wait for the very slow wheels of the NHS to start turning.

As for me, I was told I had to go back to work, only 9 hours a week at the moment, it is killing me, my drunk zombie feeling is getting worst and worst, I was standing at the top of the steps to the underground today and just managed to stop myself falling forward.

 

Hi Peter.

Gosh, I thought our system here in Canada was slow...........

It takes months to see a neuro, or any kind of specialist.

I went through hell with bis withdrawal.   I did not know at the time that it was withdrawal and thought it was anxiety,.

Then I had to wean off trazadone and klonopin.  That has been completed but the withdrawals symptoms are still there. This weaning process took about 10 months.    This was the hardest thing I have ever done,, but needed to be done in order to have a second ablation.....which is Jan16th.....yikes