kalamazoo Posted July 10, 2018 Report Posted July 10, 2018 Hey guys, I've had arrythmias from my POTS for as long as I can remember and I'm just wondering if you guys have them too and what they feel like? How do you deal with them? Are you guys able to drink alcohol? Have you found any effective medicine? Does anything make it worse? Personally stress exaggerates my symptoms and so does exercise but I know everyone is different Quote
yogini Posted July 10, 2018 Report Posted July 10, 2018 POTS involves normal sinus tachycardia. I think most of us have PACs and PVCs but these aren't considered arrhythmias. My doc told me everyone gets them, but we are more attuned to our heartbeats, I think. I think many of us ignore them - tachycardia is much worse for me than PACs/PVCs. I couldn't drink alcohol before but I can now. If I know I will be drinking I usually salt load a day or two before. Quote
Scout Posted July 10, 2018 Report Posted July 10, 2018 Hi there, Indeed, I almost always have normal sinus rhythm when having an episode, but just very fast. I have, however, had a few incidents of SVT, captured on a heart monitor. Around 8 years ago, we tried to do an ablation but weren't able to do so, as they said they couldn't find the exact spot, so decided to leave it instead of risk a pacemaker (have heard a pacemaker is often not good for POTS patients?) I've also been told I have inappropriate sinus tachycardia on occasion, but it's difficult, because my HR often is below 100. Basically, my heart is all over the place. The slightest of triggers sets it off. I was somewhat well controlled on Metoprolol for several years, but it stopped working, and also started affecting my blood sugar levels (a side effect I wasn't aware of). I have PVCs and PACs quite often, and they sometimes startle me, but I've just accepted them, now. As for the alcohol... oh how I miss it. Quote
Anamaria Posted July 10, 2018 Report Posted July 10, 2018 My heart literally goes all over the place my EP can’t explain it. There has been talks of pacemaker as a last resort but neither I nor my EP want that. I haven’t drank alcohol in over a year Quote
StayAtHomeMom Posted July 10, 2018 Report Posted July 10, 2018 1 hour ago, Scout said: I was somewhat well controlled on Metoprolol for several years, but it stopped working, and also started affecting my blood sugar levels (a side effect I wasn't aware of). What dosage of Metoprolol were you on? And in what way did it affect you blood sugar? I haven't heard of that for a side effect. I am on it now and it helps my heart palpitations but it is starting to stop working for my HR. So we are having to tweak my dosages. Quote
StayAtHomeMom Posted July 10, 2018 Report Posted July 10, 2018 I have the "pause" in my heart rate. At least that is what my PCP called it. I can even recognize on an EKG. It is a weird hiccup. Not sure what it is called. I more or less just deal with. No major issues except every once in a while it will cause me to cough really bad and feels like my heart wants to explode for a half a heartbeat. But it settles back down and not a big deal. Only happens about once every 3 months or so at this point. Before I got diagnosed it was about once every 2-3 years. Seems I have had it for a long time even before my body started freaking out at me. I have never been a big alcohol drinker so not sure how it would effect me now. I take metoprolol for my heart and it seems to help. I noticed a huge difference when I started the medication. Even now I can tell when the medication is wearing off. I agree with yogini: the tachycardia and the accompanying symptoms are much worse then my heart beating a little weird every blue moon or so. I agree stress makes it worse. Also where I am in my menstrual cycle. I have so many worsening symptoms leading up to that time of the month. It is a little fascinating how my body seems to know it is almost time and starts getting mad. Good luck!! Quote
jklass44 Posted July 10, 2018 Report Posted July 10, 2018 I get very frequent PACs and PVCs. I've tried Metoprolol, Propranolol and Diltiazem which have all helped lower my heart rate (I also get sinus tachycardia), but did nothing for my palpitations. I agree with StayAtHomeMom, everything seems to get worse a week or two leading up to my period. I usually have to take it really easy and not do too much during that time. Lots of naps... Oh and no I can't drink alcohol. I'm still fine with coffee though thank god. Quote
bombsh3ll Posted July 10, 2018 Report Posted July 10, 2018 I tend to get more frequent PVCs when my potassium is on the low side, or is in range but has dropped quickly. I take licorice root and a small dose of fludrocortisone, which can both lower potassium. Supplementing potassium and magnesium helps. I am sure you have probably had your electrolytes checked but would recommend it if not. You could just try supplementing anyway, as long as you have healthy kidneys any extra will just be excreted. I take Now Foods potassium gluconate and magnesium citrate. Both taste mild enough to hide in a smoothie without noticing a taste. There are also combined supplement pills called Heart Calm that some people swear by but these are more expensive and you cannot individually tailor your dose. B x Quote
Pistol Posted July 10, 2018 Report Posted July 10, 2018 When my POTS started I was suffering terribly from palpitations, tachycardia, bradycardia, PVC's and PAC's ( often three or four at a time or every other beat for minutes... ). My holters always only showed sinus tachycardia and the above mentioned irregularities. I used to tell my PCP that " today is a brady/palpitation day" or "a tachy day". Once I started beta blockers the PVC's got better but not until I started Carvelidol and Diltiazem did they stop altogether. I still get them when I overdo things or are starting with a flare, my specialist says the palpitations are a signal that the ANS is "off", so they are like an alarm system. -- I also have atrial flutter but ironically I do not feel when I have it. Quote
RecipeForDisaster Posted July 10, 2018 Report Posted July 10, 2018 I can only handle half of a beer now. I'm a huge craft beer person so it's very disappointing. I used to be able to try 3-4 and now I have to split just one with my husband, which means we have to agree on which one to drink. First world problem, but still. i have horrible effects from more alcohol than that, even though I was well acclimated before. Getting hot and sweaty, nausea, very fast pounding heart, general illness waking me from sleep... nothing ever helped with it. ANY wine even homemade sulfite free stuff causes this, too. It's so unpleasant that it's not worthwhile to drink wine or a whole beer. I can drink the non-alcoholic stuff, but it's awful. I had a 30 day Holter and it showed lots of PVCs and PACs including bigeminy (every other beat), and fast sinus rhythms... that's about it. Pre- and during cycle is a really bad time for me too. Pretty much everything gets worse. I think taking B6 that week has helped somewhat, but not enough. Quote
StayAtHomeMom Posted July 10, 2018 Report Posted July 10, 2018 3 hours ago, jklass44 said: I'm still fine with coffee though thank god. No coffee for me, but Mountain Dew is fine. Weird how that goes isn't it? Quote
dizzytizzy Posted July 18, 2018 Report Posted July 18, 2018 Don't do any alcohol at all now. I like to say I drank more when I was underage than I ever did legally 😝 I had some PACs and PVCs show up on my 30 day heart monitor. EP said those are more likely to happen when the body is under stress. Since I've been undergoing treatment, they have subsided substantially. When one does occur here and there, I am able to talk myself through it now. Quote
zerohours000 Posted July 18, 2018 Report Posted July 18, 2018 I can't drink coffee, tea, soda, alcohol, or do my favorite thing in the entire world --- smoke medicinal marijuana. Which tells me something is truly off in my ANS if I get shakes by doing the latter. I've basically been as clean as I've ever been over the last 4 months, except maybe eating kind of meh. Was juicing a lot but that waned. Quote
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