beta blockers and heart failure symptoms?

[Anna]

Hi,

a few months ago my doc prescribed atenolol for the POTS. it lowered my heart rate but after about a week i started having symptoms of heart failure. i called urgent care and they told me to stop taking it and contact my doctor, which i did... and she tried prescribing a different beta-blocker, labetalol. that gave me really bad melancholic depression so i stopped after a few days and haven't taken a beta-blocker since.

i tried to find this out online but couldn't. does getting heart failure symptoms on a beta-blocker mean that you already have heart failure? does it mean something else? i did read that for people with HF, when they take a beta-blocker they will often have their symptoms get worse before they get better.

i have an appt in 2 weeks and will ask for a bnp test (b natriuretic peptide, a heart failure test)... but in the meantime, does anyone have any ideas/suggestions?

thanks in advance.

 

[Bob]

It seems that beta blockers can block the effects of adrenaline in the heart and arteries.
I guess that as our hormonal systems are messed up, and our adrenaline levels are out of kilter, and our hearts are already weakened through the illness, that it's quite likely that the effect of beta blockers could have an unusually adverse effect for us.

The list of adverse reactions for beta blockers on wikipedia includes heart failure, so if that's true, then I think that you wouldn't necessarily have to have heart failure without the beta blockers.
But some clinicians (I think Byron Hyde, and Cheney) say that ME is a form of heart failure anyway, so it could be that ME and beta-blockers don't always mix well for us.
But I've never taken beta blockers, so I don't know very much about them.

I'm not questioning the validity of your experience Anna, but are you certain that it was heart failure that you experienced? (I mean, is that your own diagnosis, or did the hospital diagnose you?)
I only ask this because it might be possible that beta blockers could give you heart sensations or palpitations, and as beta-blockers can also cause abnormally low blood pressure, they might also make you faint or feel lightheaded.
So these combined might give you the impression of heart failure.

But I'm not an expert, so whatever it is you experienced, please make sure that you get some good medical attention Anna.
Take care.

 

[Persimmon]

Around 15 years back, researchers at Johns Hopkins (primarily Calkins & Rowe) identified issues of orthostatic intolerance (neurally mediated hypotension / POTS) in CFS. There was a fair bit of hope associated with their research at that time. Their treatment regime, as I recall, included the use of beta-blockers and anti-arythmia drugs to regulate heart function, as well as florinef & salt tablets to increase blood volume. Unfortunately, their theraputic approach didn't yield the degree of benefit that had been anticipated / hoped for.

There's been a lot published on the topic, and presumably there are also pages on this forum that you could search if you wanted to learn more.

 

[Wonko]

This is just from personal experience but beta blockers in my case seemed to slow my heart and enforce that slowdown rigidly, it's my understanding that this how they are supposed to work and is part of the mechanism of how they reduce blood pressure.

Because of this rigidity I would have thought it fairly inadvisable for people with POTS/OI to use atenolol in particular - thats what i was on before I had it changed to a calcium channel blocker due to adverse effects.

 

[3CFIDS@ourhouse]

Use of a very, very low dose beta blocker (metaprolol) helps with POTS for me, and I read that 1/8 of a normal dose often works well for people like us. My doctor told me to start with half a pill, but I take tiny doses of any medication, so I started with 1/4 a pill. Even that is too much, slows my heart down and makes it barely chug, but 1/8 is helpful if I have to be upright for a bit.

 

[Jenny]

FWIW I've been told I have inotropic fatigue (problems with contraction of heart muscle) and so should avoid the beta blocker propranolol as it has a negative inotropic effect.

Jenny

 

[Shellbell]

Anna, FWIW, I was prescribed atenelol over 10 years ago for high blood pressure and high heart rate. This was before I crashed into the world of CFS. My doc cautioned me that I may not feel right for about two weeks after starting this drug. Three days after, I started having issues. At one point, we thought I was having a heart attack. The ER doc told me what I was experiencing was normal as some people have really weird sensations, even pain in the first couple of weeks after starting a beta blocker. He happened to be one of those people and said he exerienced the same as myself. He told me to continue on and that those sensations would go away. It did!

Fast forward 10 years, at my visit with my regular MD (a different doc than before) a few weeks ago, said she wants me off the atenolol. My BP/HR are now too low while taking a minimal dose and have been since a couple weeks since starting this drug 10 years ago. All along my docs kept telling me this was really good. The current doc didn't give me any details, but she mentioned that they are now trying to take all their patients off of them. All she told me was that they are finding that these drugs aren't meant to be taken long term and gave no other explanations. So, this makes me wonder what docs know that we don't about the medicines we are taking.

 

[Anna]

Thanks for all your responses!

Bob--I said symptoms of heart failure because i had shortness of breath that got worse on lying down. also some swelling in the hands and feet, and those are both symptoms of heart failure. No doctor actually told me i was in heart failure though.

wonko--i'm not sure i understand why atenolol would be especially bad? is there a beta-blocker that's supposed to be good for POTS?

3cfids--i thought about that, that if i try this again i will at least split the pill in half even though i was on a tiny dose already. do you have trouble cutting it into quarters? i have problems splitting anything smaller than halves, and sometimes just in half, even with a pill splitter.

shellbell--that's kind of scary. reminds me of something my mom told me about her doc trying to take her off hrt right before that study came out showing hrt was linked to cancer... eek =/ did the bb help while you took it?

 

[Shellbell]

Anna, I am still on it, getting ready to taper off. Right before I crashed into the CFS world, I was tapering and was almost off of the atenelol. It controlled my blood pressure and heart rate very well, too well. While tapering, I was feeling less fatigue, just generally better overall. I had just started bioidentical hormone replacement therapy prior to this and the doctor felt that it was having a positive effect on my blood pressure.

However, just before coming off of it completely, I had an adverse reaction to cipro and crashed hard. My blood pressure soared and I had to go back on the full dose.

I started Fred's b12 protocol a couple of months ago and am already seeing a drop in my blood pressure and heart rate, lower than it should be. So, she wants me off. But then again, she said she wanted me off them anyway. I have to go back to see her in the next month or so, as she is monitoring me while coming off. I am going to ask her to give me more details as to why they are wanting to take their patients off beta blockers. Anyway, I am hoping once off, my energy will increase again. The b12 protocol is really helping with my fatigue by the way.

 

[3CFIDS@ourhouse]

Anna, I use a small paring knife to cut across the scored mark down the middle. Then cut those pieces in half and again. They are really just slivers by that time, but enough to slow down the pounding heart. I take them sublingually. My heart rate since CFS is now in the high 50's- it used to be in the 70's-80's before I got sick-but if I'm standing for more than a few minutes or do too much, it will go up in the 90's.

 

[bertiedog]

At the recent Conference it was mentioned that low dose Propananol was recommended at a dose of 20 mg. It was recommended because it is short acting and an ultra low dose.

One other person at the Conference also mentioned Florinef as being helpful for some people too to get rid of their POTS or at least try to take lots of sea salt.

I have to say that both these meds have kept my very severe POTS under control. I take the 20 mg Propananol around 10 am and tab Florinef on waking. Some days I need another dose of the Propananol.

Its important when taking a betablocker that you arent taking a high dose and its also important that your thyroid is functioning properly because if it isnt and you take a betablocker you could get a lot of very unpleasant heart symptoms such as you describe.

I also need T3 and some dessicated thyroid because I have Autoimmune thyroid disease.

It would be best for you to go back to your doctor and ask about Propananol. But first it would be useful if you could watch the presentations on OI and POTS on the NIH site. I dont know if they are on You Tube?

Pam

 

[PNR2008]

After 3 tilt table tests and fainting in 7 min after the first two, I have been on 20m of propananol (inderal) and doing well on it. Sometimes I half the pill to see if any difference but usually go back on the 20m. My thyroid is under control but is checked every 6mos and I take synthroid. I can't stand for any length of time and must always lie down with feet up especially during a relapse. Most people don't understand why propananol is taken for low blood pressure in OI and just had a heated discussion with a nurse friend who thought I was nuts for taking it. Having no energy for the fight, I directed her to the internet but she only half got it.

 

[Uno]

I have been on Florinef for about six weeks now and definitely see an improvement in many of the POTS symptoms. I take about 60mg of Propanolol some days, eeks - stillcan't get my heart rate under control but that's another story for another day. Best of luck with it all x

 

[Francelle]

Yesterday I got the results of my OI test and the doctor wants me to go on a low dose -10mg BD (twice daily) dose of Inderal (Propanolol). I will fill my prescription next week, after the Easter holidays.

I was wondering PNR2008 do you take your 20mgs at the one time or do you take it as a divided dose?

 

[PNR2008]

I take the 20mgs at night because I heard it can cause fatigue. For sleep I need any help I can get. Thanks for addressing me, I was starting to feel invisible here. I'm going through a horrible relapse, the stories of people in bed for years scare the H out of me. I'm in bed alot almost half the time during my regular sick self but I can still take care of the essentials. Must have my feet and legs out or elevated.

 

[Francelle]

Thanks PNR2008. I started my first dose of Propanolol (Inderal) 10mg last evening and within 1 hours my heart rate reduced to a sane number. I took another dose this morning and now this evening and so far no adverse side effects.

I agree with you, when I hear about M.E. people in bed for years it makes me want to do all I can to prevent it happening but who knows what that involves. Perhaps some M.E. people just have different factors which make them the 25%ers. So sad!

I will discuss the implications of starting Inderal tomorrow with my Endocrinologist. I hope she doesnt hit the roof!