Acebutolol?

[RecipeForDisaster]

My newest cardiologist wanted me to try ivabradine, although metoprolol is doing fine for me - I had no idea it would be so expensive even with the drug discount card and partial insurance coverage. That’s a no go. 
 

He then suggested acebutolol, saying he had success in other patients. I have pretty bad asthma if it’s triggered. Has anyone used this one? I’m not sure how specific it is.

[Birdlady]

I was on acebutolol for many years. It was one of the better beta blockers I had been on. It is a slightly different beta blocker than the others. It has intrinsic sympathomimetic activity. https://en.wikipedia.org/wiki/Beta_blocker#Intrinsic_sympathomimetic_activity

I stopped taking it after my blood sugars started to raise and I was worried it was playing a role in it. 

[RecipeForDisaster]

Thanks ! I’m doing pretty well on metoprolol... he thinks this might be better. I knew about the ISA - neat? It helped you more than others?

 

[Birdlady]

If you are doing well, then it may not be worth trialing a new med. It's possible that the acebutolol would act less on the lungs, but that is definitely a question for your doctor. Acebutolol kept my heart rates down and calmed my nerves, but it is no miracle drug by any means.  I had tried metoprolol, propranolol, nebivolol and acebutolol.

Acebutolol was the best one I found for myself. If I do go back on a beta blocker it will be that one.

[RecipeForDisaster]

That’s what I figured. He is excited that I could do better on acebutolol (I’m not doing well, as far as low BP, orthostasis, syncope...) but I doubt it. Metoprolol has not bothered my lungs and has controlled my HR nicely, most of the time.

 

I would love to know what made it your favorite beta blocker! I am definitely considering whether it’s worth a trial.

[Birdlady]

Nebivolol did not stop the shakiness and jittery feelings I get, so that one was not good for me personally. That one only blocks Beta 1. My heart rate would be 90, but I was super shaky and anxiety ridden. In the end it did not increase my postural time. 

Metoprolol and propranolol both just made me super tired and lowered my blood pressure. I felt like I was pushing against a wall on those two.

Acebutolol stopped the jitters, lowered my heart rate and didn't make me quite as tired as the other two. It did help to increase my postural time.

Sadly though I really think beta blockers in general were making my blood sugars worse, so I probably won't go back on them for a while unless an echo shows an enlarged heart or something like that. I got to figure out what is going on with my blood sugars.

[RecipeForDisaster]

Took my first dose last night and was up all night. I felt like I had some caffeine before bed. It did help with my rate and pounding, but like you said, I can feel terrible "heart wise" with a rate of 76. Neither it nor metoprolol changed my blood pressure.

 

Today will be the first daytime test and I’m going for a walk. Sorry about your blood sugars - my fasting is always 102-106, and while I knew beta blockers can raise it, I guess I didn’t think I’d have that. 

[Birdlady]

Oh no that is not good. I always took my beta blocker in the morning. Perhaps the intrinsic sympathomimetic activity won't work well for you. If not, at least you know and can cross that off the list.  

[RecipeForDisaster]

Yeah, I don’t think ISA is good for me at night. He has me taking it twice a day - I definitely need the help with HR and pounding most at night. It seems ideal to take this in the morning and metoprolol at night, but I bet they won’t let me do that.

I do think I feel better during the day, with a bit more energy and exercise tolerance. My BP hasn’t changed(but it didn’t with metoprolol either). I want this to work! I hate going back to doctors saying I can’t use something, and I like the daytime effects. 

[IbeatPOTS]

I'm on Acebutolol 200 mg 1x daily in the morning (now down to a compounded 100, let's see how that goes). This drug is not meant to be taken at night. 

Metoprolol is absolutely horrid in my experience. I didn't have my 12.5 mg dose of it for one day while transitioning from the hospital to home (ah yes, they didn't think to give it to me in the hospital then) and I woke up the next morning with a heart rate of 183. The drug also gave me severe night sweats, insomnia, bad dreams that I couldn't remember, and I woke up every morning with a heart rate of 150 on it (in other words, it worsened my adrenaline dumps). The drug did not help.

Beta blockers in general aren't a good idea for dysautonomia, IMO. I had a severe POTS flare, was in the hospital for a month because of it and I couldn't move basically (in other words, I was totally bedridden). Tried all kinds of meds, but the day I realized that medication is just a bandaid for my symptoms, I was like no, I don't want to be on medication for the rest of my life. 

What helped me was brain training, peripheral nerve stimulation, and a set of functional neurology assessments. Those things, walking and neuro anti-synergy exercises, lots of sleep, and a good set of nourishing vitamins (B1, B12, D + K2, copper -- from diet, not in pill form), is the only way I recovered from this. 

Now about a month later of doing these things I can walk and I'm nearly back to my old self. 

[RecipeForDisaster]

On 6/3/2023 at 9:32 AM, IbeatPOTS said:

I'm on Acebutolol 200 mg 1x daily in the morning (now down to a compounded 100, let's see how that goes). This drug is not meant to be taken at night. 

Metoprolol is absolutely horrid in my experience. I didn't have my 12.5 mg dose of it for one day while transitioning from the hospital to home (ah yes, they didn't think to give it to me in the hospital then) and I woke up the next morning with a heart rate of 183. The drug also gave me severe night sweats, insomnia, bad dreams that I couldn't remember, and I woke up every morning with a heart rate of 150 on it (in other words, it worsened my adrenaline dumps). The drug did not help.

Beta blockers in general aren't a good idea for dysautonomia, IMO. I had a severe POTS flare, was in the hospital for a month because of it and I couldn't move basically (in other words, I was totally bedridden). Tried all kinds of meds, but the day I realized that medication is just a bandaid for my symptoms, I was like no, I don't want to be on medication for the rest of my life. 

What helped me was brain training, peripheral nerve stimulation, and a set of functional neurology assessments. Those things, walking and neuro anti-synergy exercises, lots of sleep, and a good set of nourishing vitamins (B1, B12, D + K2, copper -- from diet, not in pill form), is the only way I recovered from this. 

Now about a month later of doing these things I can walk and I'm nearly back to my old self. 

That’s great that those things have helped you. I don’t have POTS and have complicated and severe illness. I’ve tried just about everything (including tVNS & probably 40 supplements over the years) and still rely on my beta blockers for symptom control. The cardiologist who wants me on acebutolol (partly for ventricular ectopy) is a big deal in a major city, and he seemed surprised I couldn’t take it at night. So, it works well to use the two different beta blockers - I’m now on metoprolol at night and acebutolol in the morning. I would never be able to sleep with the bad pounding that I had before metoprolol.

A lot of stuff I use is a band-aid, including IV fluids, although I’m hoping that IVIG is the fix for a lot of what’s wrong with me, and I will be able to taper off everything! It hasn’t happened after almost a year, but I’m told it might take two. I have never stopped my healthy diet or my exercise, though.