JennKay Posted November 16, 2022 Report Share Posted November 16, 2022 Hi everyone -- I'm still struggling with PVCs. At least now I will have weeks where I only notice a handful a day, but then they inevitably return and I will have a PVC once every 5-10 beats for hours and sometimes days. Which is sooooo frustrating! I've tried 4 beta blockers (metroprolol, atenolol, carvedilol, and propranolol), none of which have eliminated the PVCs. I'm currently on propranolol b/c it is the one I tolerate the best. I'm taking florinef (0.1mg total per day) but my potassium is fine -- the labs that were run yesterday showed my potassium level at 4.5, which is the highest reading I've ever seen for me. All the coconut water and bananas have been doing their job at keeping my potassium levels up. My magnesium is also fine and is in the middle of the "normal" range. Anyway, my question to the group is -- do any of you take a calcium channel blocker (CCB) for PVCs, and if so, how well does it work for you and did you "fail" on beta blockers previously? I've been offered flecainide, but I'm hesitant to try it b/c of the potential side effects and would like to potentially try a CCB first. Thanks!! Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 16, 2022 Report Share Posted November 16, 2022 Oh so sorry you are struggling still with the PVC's. I do take a CCB "Amlodipine" along with carvedilol. all i can tell you is that i do not notice the PVC's like i did in the past. Again not perfect but is better than i have experienced. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 16, 2022 Report Share Posted November 16, 2022 I was also offered flecainide, but ended up using acebutolol during the day - it’s a beta blocker but with anti-arrhythmic properties. I take metoprolol at night, but that’s more for the pounding. I did try diltiazem, but it didn’t make me feel any better and it lowered my already low BP. The other meds I still take have not done that. Quote Link to comment Share on other sites More sharing options...
JennKay Posted November 17, 2022 Author Report Share Posted November 17, 2022 @MikeO and @RecipeForDisaster -- thanks for sharing your experiences! I think I might give a CCB a try. I saw my EP today, which is why I asked about the CCB here, and he said he had no problem letting me test it out. If it doesnt work then I can just stick with my current routine...or maybe consider flecainide if I get super desperate... @RecipeForDisaster -- what dose of diltiazem did you try? My EP prescribed the same one. Not sure the dose yet. Will pick up the prescription tomorrow. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 17, 2022 Report Share Posted November 17, 2022 @JennKay I am on Carvelidol but that did not help enough for tachycardia and PVC's and also did not keep my high BP down. When my specialist added Diltiazem to the mix things improved greatly. On both meds ( which were gradually increased and I now take 12.5 mg Carvelidol and 240 mg Diltiazem ) I rarely have PVC's, my BP is mostly stable and the tachycardia is manageable. I have HPOTS, though, and my symptoms are brought on by excessive vasoconstriction. We started with 1/2 tab of 30 mg twice a day and then gradually increased until I was on the high dose. CCB was a game changer for me, I hope it works for you! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 17, 2022 Report Share Posted November 17, 2022 8 hours ago, JennKay said: @MikeO and @RecipeForDisaster -- thanks for sharing your experiences! I think I might give a CCB a try. I saw my EP today, which is why I asked about the CCB here, and he said he had no problem letting me test it out. If it doesnt work then I can just stick with my current routine...or maybe consider flecainide if I get super desperate... @RecipeForDisaster -- what dose of diltiazem did you try? My EP prescribed the same one. Not sure the dose yet. Will pick up the prescription tomorrow. I started with 30mg and went up to 120mg. I just had a weird "helium" or floating sensation in my chest when I took it. It has a short half life (unless you have the ER/CD version), so probably fine to try. Acebutolol has been good for palpitations in general, PVCs, and it hasn’t dropped my BP. I don’t see it used much, though. Quote Link to comment Share on other sites More sharing options...
JennKay Posted November 18, 2022 Author Report Share Posted November 18, 2022 @DysautonmiaMatt -- my labs included the regular plasma Mg, but it's ok. I'm not going to ask my EP for another set of labs. I will ask him about the potassium supplement though. Right now he is OK with me taking an over the counter 2.5mEq potassium tablet 2x per day. I will ask if he can prescribe me something. Quote Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 24, 2022 Report Share Posted November 24, 2022 On 11/17/2022 at 10:07 AM, Pistol said: @JennKay I am on Carvelidol but that did not help enough for tachycardia and PVC's and also did not keep my high BP down. When my specialist added Diltiazem to the mix things improved greatly. On both meds ( which were gradually increased and I now take 12.5 mg Carvelidol and 240 mg Diltiazem ) I rarely have PVC's, my BP is mostly stable and the tachycardia is manageable. I have HPOTS, though, and my symptoms are brought on by excessive vasoconstriction. We started with 1/2 tab of 30 mg twice a day and then gradually increased until I was on the high dose. CCB was a game changer for me, I hope it works for you! How do people ascertain if their symptoms are caused by excessive vasoconstriction? Thanks! Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 24, 2022 Report Share Posted November 24, 2022 12 minutes ago, Looking_for_light said: How do people ascertain if their symptoms are caused by excessive vasoconstriction? For me i will start to whoosh and feel the vasoconstriction in my carotid arteries. If it gets out of hand i will blackout, go hyper-pots and take seizures like @Pistoldoes. Bottom line you will know it. Quote Link to comment Share on other sites More sharing options...
Looking_for_light Posted November 27, 2022 Report Share Posted November 27, 2022 @MikeO What's the whoosh like - the presence of intense searing pressure through head, especially at front upon standing? Anyone have that? Quote Link to comment Share on other sites More sharing options...
JennKay Posted December 6, 2022 Author Report Share Posted December 6, 2022 OK -- I was finally brave enough to try the diltiazem b/c the PVCs continue to be crazy. I only took half the 30mg tablet (non-extended release; approved by pharmacist and doctor) b/c I am super sensitive to all meds and, crazy enough, my systolic BP is about 25 points higher than it was yesterday. Yesterday my BP was running 95/65 and today, after taking the diltiazem, it is running about 120/75. Has anyone else experienced this with diltiazem or another CCB? I'm a little bit confused, although I thought I remember reading some where that the immediate release CCB tablets sometimes increase sympathetic activity while the extended release lower it. I do have cold extremities at the moment and this isn't a normal symptom for me. It has been about 1.5 hrs since I took my first dose. Not much happening for the PVCs, but I'm guessing that is b/c I took half a tablet. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 6, 2022 Report Share Posted December 6, 2022 Well probably this is why my cardiologist won't prescribe this for me. But as always drugs work differently for folks. In deciding to use a medicine, the risks of taking the medicine must be weighed against the good it will do. https://www.mayoclinic.org/drugs-supplements/diltiazem-oral-route/before-using/drg-20071775 Quote Link to comment Share on other sites More sharing options...
JennKay Posted December 6, 2022 Author Report Share Posted December 6, 2022 Well, now my BP is back to its measly 95/65. That lasted about 2 hrs! I wonder what would have happened if I took the full 30mg dose 😆 So weird!! Quote Link to comment Share on other sites More sharing options...
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