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dizzytizzy

Latent effect of propranolol (or beta blockers in general)

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EP started me on 10mg of propranolol about two weeks ago, to be taken at bedtime to help with nighttime tachy episodes thought to be from adrenaline surges. Trial went well, so he had me increase to standard dosage of 20mg nightly. Been doing that for about a week now and haven't had any prominent issues and no nighttime tachy either. 

In fact, the past two to three days I have felt almost completely "normal" except for a few daily bouts of dizziness and lightheadedness. Today, those symptoms kicked into full gear and I've come close to passing out three times so far. Haven't been able to get vitals right away when it happens, but a few minutes after laying down and elevating feet, BP is 105/73, HR 59. Not terrible, I don't think. 

And I've noticed that my BP (and to some extent, HR) is lower during mid-morning orthostatics (I usually take them around 10am each day). For example, my BP/HR at the 5 minute standing mark today was 84/65 - 64, which is lower than my usual of around mid-90s/mid-60s to 70s.

I've just sent a message to the EP, but thought I'd ask here too: I've been told that propranolol is a short-acting beta blocker, but is it possible that it's creating latent adverse effects and dropping my BP and/or HR periodically throughout the day?

I really thought we had hit on a winning combination for treatment, but this dizziness/presyncope crapola is horrible. 

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My favourite topic.

I was a very active and fit person until the day they put me on Bisoprolol beta blocker, turned me into an old man overnight, a drunk zombie, so I cut the minimum dose tablets in half, they still found me barely conscious at work with no detectable pulse, oxygen brought my pulse up to 42bpm.

So they took me off beta blockers March of 2017, unfortunately, the damage is permanent.

It was I who had to suggest the NHS look into the possibility that a drug that disrupts the Autonomic Nervous System, has disrupted my Autonomic Nervous System, only took about 7 months before I got the one decent cardiologist, (at St Georges), to listen to me, he now tells me he has another patient with the same long term damage from beta blockers. 

 

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2 minutes ago, dizzytizzy said:

@Peter Charlton: What damage is that, Peter? Downregulated BP and HR?

What were your symptoms to prompt the beta blocker usage?

I had Venticular Tachycardia.

Lets see if I can remember the list of syptoms that arrived with beta blocker usage and remained after I was taken off them.

Firstly, I felt as if I was a drunk zombie, and I could no longer feel my lungs working, I would get breathless and forget to breathe when talking, its as if I had to remember to breathe. Maybe my heart rate going so low would account for such?

When I was in hospital, their machine was constantly bleeping as awake, my blood oxygen was 87%. I eventually bought my own which showed it would often spend my sleeping hours at 85%, yet lung function tests showed I had good lungs, and I could get my blood oxygen to 99% if I really tried. I also developed a horrific cough when they tried me on a different beta blocker for a week, the cough remained until April of this year as a tickle that gave me a constant urge to cough.

My stomach seems to have turned itself off, I no longer feel hunger, I have had to give up eating until the evening as eating makes me feel so exhausted that my speech becomes slurred and my balance even worst.

My blood pressure was previously a little high, generally about 137, at the Autonomic Unit at Queens Square they found it drop by over 20 points when I stood up after three minutes.

Worst thing is the brain fog, the feeling I am drunk and disorientated, I really feel as if I have brain damage, my balance gets worst as the day goes on, I only feel relief when I lie down now, so my days are short and unproductive, I have lost my job. Today for instance, I put the kettle on to make a cup of coffee, reached for my cup to find it full of the still hot coffee I had only just made!

My heart rate used to be all over the place, sometimes really low, then for no reason and whilst just sitting down it would shoot up to 150.

I think I get Prinz Metal Angina now, for mo reason, and certainly not from eating!, I get a real band of pain across my chest, an ecg shows massive T waves when this occurs, higher than the R waves sometimes.

 

Evening 29 30 March 18 no beer pulse 154-40 OXYGEN 74slyf3-ab61w-001.jpg

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@Peter Charlton so sorry to hear about your troubles. It's always a gamble with the trial and error of meds it seems.

Anyone found one daily dose of 20mg propranolol to drop their vitals too much?

What other treatments have helped to minimize adrenaline surges?

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@dizzy tizzy How about one that's both an an alpha and beta blocker? Your is just beta. I remember when my mother was given propanolol (inderal) decades ago, she had very bad reactions to it. in her case, she went like drunk but in a bad way.  I wonder if it had long term consequences, but we never thought of that as possibly contributing. (years later she tried another beta-only blocker, and had similar reaction though never as bad as the inderal). How about just halving the dose or even less? maybe you need to find the sweet spot since you did well on it first couple of days. (I also seem to get adreniline surges during the night but i just don't know how to treat it. given my own and families reactions to meds, I keep thinking it will make me sicker)

@ Peter: what was the cause of the initial ventricular tachy; i'm surprised you survived that!

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I did not respond well to several BB's ( Metoprolol, Bystolic ) until I tried Carvelidol ( both alpha - and beta-affecting ). It was the game-changer for me as well as several family members with POTS.  

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@Weary: Yeah, I was surprised at how well I was tolerating it initially as I'm very sensitive to meds. Only a little lightheadedness (while lying down) the first night of the 10mg and then nothing much with the increase to 20mg until about four days in and the dizzy spells started up. I was ready to declare success because it had helped the nighttime rushes so much, but I can't look past the possible side effects anymore - today has been horrible. For tonight and until I hear back from EP, I'm thinking of going down to 10 or 15mg and see how it goes. 

@Pistol: What are the upsides to taking an alpha/beta blocker as opposed to just a beta blocker? I've read a lot about Carvelidol on here and I think Labetalol too is one alpha/beta that Dr Grubb prescribes often for hyperPOTS patients. I was initially put on Bystolic when I first got sick and the first cardiologist told me it was all attributed to anxiety and the meds would help with that. It decreased the perfusion in my body (because I tend to have lower BP to start with anyway) and my hands were turning blue. So I'm not a huge fan of messing with these types of blockers to begin with but am trying to keep an open mind. 

 

Edited by dizzytizzy
Added info

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@dizzytizzy - I am not 100% sure but I believe the regular BB"s caused vasoconstriction in me which is a problem for me since it is vaso constriction that causes my syncope and HTN. The Carvelidol does seem to not cause that and it very much helps for both HR and BP. However - for me it still wasn't enough dilation so I am also on calcium channel blocker. If your hands were turning blue you might have Raynauds - I have that and the Carvelidol did not set it off.   

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@Pistol: Appreciate the info. Still waiting to hear back from EP.

Months ago when I first became symptomatic, he put me on the calcium channel blocker diltiazem - I believe he thought I was over constricting initially. I had terribly cold hands and feet all the time, possibly a sign of Raynauds maybe. I still had nighttime tachy episodes on that so that's when he switched me to midodrine, which seemed to work better and eliminate some of the daytime tremor feelings when I increased the dosage, but nighttime tachy remained.

That's when the beta blocker discussion came up again and here we are in all its glory :)

I've been to two rheumatologists and never been diagnosed with Raynauds. Maybe I'll have to ask specifically about that again. 

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Dear @dizzytizzy - in my case I have to take BB and Diltiazem. The carvelidol is a BB that I can tolerate b/c it does not cause vasoconstriction but - in my own case - I needed extra vasodilation so the diltiazem helps but it would not help for the tachycardia - the carvelidol does that. So - I take Carvelidol for the tachy and diltiazem for the high BP. 

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22 hours ago, Weary said:

 

@ Peter: what was the cause of the initial ventricular tachy; i'm surprised you survived that!

No idea what the initial cause was, initially just a funny feeling like you get going over a bridge, and only every few months. When it became more regular I tried the NHS, after they failed to find anything in two years, I bought my own ECG, my GP said "Benign Ectopics, nothing to worry about", its only because I had a friend who was a secretary for a cardiologist at St Tommies, that she got a second opinion, next thing I had a cardiologist o the phone telling me to ring an ambulance every time it happened, which of course being a bloke, there is no way I would be doing that.

It was Boxing day 2016 that I felt somebody had a dial that turned me off, and they would turn it down every three seconds and then back on before I blacked out, so I went to St Thomas' a few days later, which is when they put me on beta blockers and my troubles really started.

So they took me off beta blockers, and now instead of just a few ectopic beats in a short run, I would be in constant Ventricular Tachycarida all day long, and every day, see one of the ecgs I took, and I still didnt call an ambulance. It was only after a couple of months that I did one night because it was 3am and I was still in VT, had been like this since midday, of course I got a telling off.

The ironic thing is when I went to a sleep clinic for my low oxygen, the doctor fobbed me off and claimed I was a hypochondriac! wrote to my GP to tell them I had "Health anxiety"!

My VT gmapbhciggkpcnok.jpg

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@Peter Charlton I have similar oximeter, that I have been wearing at night. Mainly I got it, because I have sleep apena that was still not controlled until recently with a BIPAP and dental appliance. But about three months ago, I started having some weird "unwell" feeling during the day, where my respiratory drive felt depressed. When I laid in bed, it got worse, and it caused me to stop breathing (central apneas). But normally I don't have central apneas. My oxygen would drop to low 80's. Now...I did have a recent DVT/PE during this time, but even after that, I kept having these episodes. No local doctor ever figured it out. I'm on Multaq for AFIB and Bystolic, and have always wondered if that contributed to these symptoms. It seemed to happen more, if I ate heavy meals during the day with the medicine.

 

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21 hours ago, WarpedTrekker said:

@Peter Charlton I have similar oximeter, that I have been wearing at night. Mainly I got it, because I have sleep apena that was still not controlled until recently with a BIPAP and dental appliance. But about three months ago, I started having some weird "unwell" feeling during the day, where my respiratory drive felt depressed. When I laid in bed, it got worse, and it caused me to stop breathing (central apneas). But normally I don't have central apneas. My oxygen would drop to low 80's. Now...I did have a recent DVT/PE during this time, but even after that, I kept having these episodes. No local doctor ever figured it out. I'm on Multaq for AFIB and Bystolic, and have always wondered if that contributed to these symptoms. It seemed to happen more, if I ate heavy meals during the day with the medicine.

 

I get the feelings you describe from the day they put me on the beta blocker Bisoprolol, I described feeling as if my lungs were not working and that I had to remember to breathe, as if it wasn't being done automatically. I would get out of breath when I talked. Yet my lungs were tested as being mechanically fine and I have seen my blood oxygen as high as 99%

Blood oxygen levels are one of the things controlled by the Autonomic Nervous System, its one of my symptoms that got me referred to the Autonomic Unit at LUH.

Funny thing though, back in April, thats 14 months since no beta blockers, something change in me, I no longer feel the breathlessness, my blood oxygen, whilst low, is usually around 90-92 rather than dropping to the mid-eighties. At the same time my Heart PVCs that had been every other beat, they stopped and I got the occasional PAC instead.

The only symptom that seems to be getting worst for me is the feeling I am drunk.

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