JennKay

Hi all -- I have been struggling with a ton of ectopic heartbeats this past week. They seem to come in waves, like I will have one every minute or 30 seconds for an hour or two, then none for a few hours. Then the cycle repeats. They have even been waking me up at 3am, to my delight, and it might take an hour or two before I can get back to sleep. I have had a terrible time with beta blockers in the past, but have decided to try propranolol with these ectopic episodes. I have been taking only 5mg at a time because I am worried about changes to my blood pressure. This helps a little but not as much as I want it too. I called my EP and he suggested I stop propranolol and start Corlanor. But, I'm skeptical. Has anyone had luck with Corlanor helping their ectopics? I'm so desperate for anything to work at this point that I might try it. Curious if others have experience with Corlanor for ectopics. Thanks!!

@redpenny11 -- I agree with the others, this all sounds related to dysautonomia. It also sounds like your parasympathetic system is dominant, like you are having vasovagal symptoms. Are you taking a beta blocker? When I was taking metoprolol (for ectopic beats and adrenaline surges) and also when I switched to atenolol, I had symptoms like the ones you mentioned, except I never fainted or was near fainting. But, I may have never reached that point b/c I was always on the sofa and couldn't stand for more than a few minutes!! When I finally found a cardiologist more familiar with POTS/dysautonomia she advised me to stop all beta blockers b/c she believed they were causing or amplifying most of my symptoms (chest tightness, lightheadedness, nausea, loss of appetite, bradycardia, difficulty breathing). I stopped per her advice and the majority of my symptoms have improved significantly with increased fluids, compression tights, and daily walking. I still struggle with ectopic beats and orthostatic symptoms, especially with hormonal changes, so I take a ridiculously small dose of atenolol as needed. I'm actually dealing with an increase in PAC frequency lately. In the past, I teneded to notice more PVCs. The PACs are still annoying, but they are less startling than the PVCs so I'm trying to remind myself not to complain!!

@Delta -- I know this thread is from about a year ago, but do you take 10mg of the extend release propranolol or normal release? And, what time of day do you take it? I've tried metoprolol and atenolol without good results, but I definitely need a low dose beta blocker occasionally to dampen the adrenaline surges and to control my ectopic beats. I saw a new EP a couple of weeks ago and he gave me a prescription for propranolol and said to try 10mg before bed since I, like others, have almost nightly sleep disturbances. Am a little reluctant to try the propranolol and have been relying on 1/4 tablet of 25mg atenolol for as needed use, but even the 1/4 tablet lowers my BP too much.

@Pistol -- Thanks for sharing the review. I will definitely give it a good read later today. I am 36, so I probably have another 10-15 years minimum before menopause. My symptoms also spike mid-cycle with ovulation and for about a year prior to my first big flare my cycles were getting shorter and I never figured out why that was happening. I mentioned it to my OBGYN but she didn't think my initial flare was related to hormone issues. Interestingly, I just started taking a folic acid supplement over the last few weeks and my cycle was way longer this month, like almost 10 days longer than my previous cycle which was short, even for me. Makes me wonder if some of my issues have been/are related to vitamin deficiencies. Since mid-March I have also been adding B vitamins to my daily routine and I think this has helped my energy levels as well.

Hi all -- this is directed at all the ladies dealing with POTS and dysautonomia spectrum issues, but what is up with all the hormones? Particularly, estrogen, progesterone, and our monthly cycles? Why do changes in these hormones cause an increase in symptoms? What are the theories and current hypotheses on this aspect of POTS/dysautonomia? My symptoms usually increase right before my monthly cycle - more ectopic beats and orthostatic issues. I don't get tachycardia when I stand, but I get lightheadedness and chest tightness when I stand for prolonged periods, even with fluid loading and compression tights. This also gets worse with PMS. I'm sure the female hormone aspect of POTS/dysautonomia has been discussed many times in the archives, but I'm wondering what you all have heard from your specialists over the years and what is the current thinking in the field. My cardiologist said it is normal for symptoms to spike with hormone changes, but didnt elaborate on why it happens. Thanks!!

Sorry to hear about your struggles with fluid intake @MeAgain... . After my last "episode" a cardiologist recommended Liquid IV. You can purchase it on Amazon, but it is pricier than other electrolytes solutions. I do think the formulation in Liquid IV helps me though. It has about 20% of the daily recommended sodium, 10% of the daily recommended potassium, along with B12, B6, and I think B5. The Liquid IV makers claim that their solution is better than others. I drink one Liquid IV in the morning and then I drink water with 2 Nuun tabs in the afternoon. Nuun can also be purchased on Amazon. I do it this way to avoid all the B vitamins at the end of the day. Maybe you could give Liquid IV a try until you can get an actual IV schedule set up? One more thought, my cousin deals with similar autonomic issues and she just started going to a boutique IV spa near her house. She said she gets a saline bag and it makes a huge difference for her, but it isn't covered by insurance, at least not currently. You would think that if the insurance companies knew about these spas, they would provide us coverage just to keep us out of the ER where it is so much more expensive!!

@Jyoti ‐ I just met with an EP today that specializes in POTS/dysautonomia and it is so nice when you finally find clinicians who are understanding and get it! He also suggested I try ivabradine, a super low dose, to help with the elevated HR I experience overnight around 3am. I'm hesitant b/c my normal HR is usually in the 60-70s during the day and can drop to the 50s overnight. Will let you know if I get brave enough to try it! An undisturbed night's sleep would be amazing. I have tried metoprolol and atenolol in the past, both were too strong and gave me weird side effects. I mentioned this to the EP today and also mentioned that lately I've had to take a dose of atenolol here and there to help with random tachycardia. He said that propranolol might be better and also gave me a super low dose of that, which I will probably try before the ivabradine.

@MomtoGiuliana - Thanks for your reply. That was the weird thing, I didn't feel different leading up to the episode. I didn't feel like I was in a flare. I actually felt pretty good. But, I am super intrigued by your comment about taking too much sodium. I had just seen my cardiologist and my BP was low at my appointment so she reminded me about increasing my salt intake to help with it. So I did, then this happens! They released me yesterday and I have been super focused on high potassium foods and drinks since coming home - coconut water, potatoes, bananas, etc. Will see if this helps. I guess I prefer low BP and normal electrolytes over tachycardia and prolonged QT intervals! Geeze, the things we get to worry about.... @Pistol - Thanks for your response as well. There was a consensus yesterday that my positive test is from my January infection and not a new infection, which they wanted to come to an agreement on since this determined if I needed to isolate or not. Whatever virus this is activated my sympathetic nervous system like crazy. It is just strange b/c the only other time this happened was with covid19. I've had other colds before and after covid19 without this type of sympathetic activity. Interestingly, my daughter woke-up with upper and lower GI symptoms this morning, so there is definitely a bug in my house. I guess whatever bug this is, covid19 or something else, is likely what triggered my episode. They did an echo and ran me on the treadmill before leaving the hospital yesterday and all looked good so hopefully this is only temporary. I have a headache and fatigue today, but maybe this is my body dealing with the virus...without all the IV fluids helping too.

@Jyoti- thanks for sharing your story. Sorry that you have had the same experience, but it's nice to know that I'm not alone. It is just so puzzling and weird to me. It all feels random and scary. I am very deliberate with eating and staying hydrated, so I can't explain what happened. Maybe it is from covid19 since this is the first time it has happened to me and I tested positive...a second time...within two months. Am hoping it doesn't happen again! Have also learned that my BP in the morning, after a full bag of saline overnight, is only 95/55. Not sure how to explain that either! I'm as plump as a brined chicken and still my BP is low.

Hi guys - I've had a fun weekend. I woke-up yesterday feeling funky - nauseated, achy, chills, elevated heart rate, ectopics. Basically similar to how I felt when I had covid19 in January. Then, when I just resting trying to figure out how to feel better, my heart rate jumped up to 135bpm and my BP went up to 145/85, which is super high for me. That's when I thought it was time to go to the ER b/c I was feeling so crappy and my HR and BP were off. Got there, my EKG showed prolonged QT, my Mg was low, my potassium was low, and my phosphorus was low. So, they decided to admit me to monitor my EKG. My heart rate finally came down after being at like 120bpm for 5hrs, but it took 2 bags of saline, 2 bags of potassium, and a bag of Mg. QT interval is normal again and cardiologist thinks the electrolytes caused the issue. They are keeping me one more night for testing on Monday: an echo (last one was June 2021 which was normal) and stress test (last one was just a few weeks ago and was normal). Oh, and I tested positive for covid19 again! They aren't sure if this is a new infection or lingering virus particles from my previous infection. One internist said might be new infection, another said probably old viral particles. Unfortunately, they really can't tell with the PCR test, but the symptoms I had yesterday were similar to my January infection. Question to the group - has anyone had their electrolyte levels randomly tank like this before and what explanation, if anything, were you given? I've been taking a daily Mg supplement so I'm very confused as to how my level of Mg were below normal. I guess if this is a new covid19 infection then the virus could have thrown my electrolytes out of whack - but I am vaxxed and had omicron in January, so if this is the case then I am super unlucky! Mainly just looking for support. Am tired of feeling so brittle!! And, I'm missing my kiddos so I'm a bit sad too.

@Clueingforlooks- yes, I'm still pretty new to all of this so I am learning as I go along. I'm not taking anything at the moment, just trying to stay hydrated, wear compression tights, and walk even if only for 5 mins at a time. I also tried atenolol, which didn't activate my sympathetic side as much, but it made my hands and feet tingle and also impacted a few other sensations to the point where I was referred to a neurologist for peripheral neuropathy. He swore I was going to be positive for peripheral neuropathy, but thankfully it came back negative. I think the atenolol was responsible b/c after stopping it, the tingling in my hands and feet has almost completely disappeared. I stopped taking atenolol beginning of November and it has only been in the last month that my BP has become less liable. With the beta blockers I could be 90/60 one minute then 115/85 two minutes later. I felt horrible all the time. Now I am usually b/w 105-115/65-70, but I still have the adrenaline issues, particularly when my cycle changes...thanks hormones! Haven't figured out the best way to deal with hormonal changes, but I have the collective wisdom of you all, and I'm sure I'll find good advice in the discussion archive! Today isn't a fun day b/c I'm at that point in my cycle, but there's always tomorrow, right? At least that is what I tell myself everyday 🙂 Honestly, I can deal with most of the weird symptoms and adrenaline, but it's the ectopics that bother me the most. Again, still to nervous to try flecainide.

@Clueingforlooks - I was started on metoprolol when my symptoms first presented last summer. My experience sounds similar to yours. At first, the metoprolol made me very tired, but I didn't have any issues with adrenaline surges. After about 2-3 weeks on metoprolol I started getting adrenaline surges, even when I upped the dosing. I elected to stop taking it, which wasn't a fun experience either. The metoprolol helped with my PVCs and PACs, but I think it dropped my BP too low and as a consequence my sympathetic side went into overdrive. I was offered flecainide but after reading the black box warning, and b/c of my experience with metoprolol, was too afraid to try it.

@MikeO- It depends on the brand. In my experience, if it isn't overly processed (e.g. no added flavors), then it usually doesn't have a coconut taste. But, it does have a distinct taste that I didn't care for at first. I'm good with it now. It is slightly sweet and I find it very refreshing when chilled. You can add it to smoothies or drink it out of the box over ice. I've been drinking Vita Coco lately. I think one small box with 2 servings has 20% of the recommended daily potassium and only 90 calories. I'm pretty sure that is more potassium than a banana.

@Nelson G. - Yes, I always make sure I have coconut water around, the kind without all the added sugars and flavors. Who knew it was so high in potassium and magnesium! During the day I alternate b/w water, coconut water, and water with an electrolyte tablet. I think the coconut water is great, especially if it isn't overly processed.

@shasta43 - I tend to get more ectopics in the evening. But, I can get them when I take a walk or when I'm working at my desk. I haven't really figured out if they occur more at rest or if I notice them more at rest. They drive me bonkers. I tried beta blockers but that amplified all my other symptoms, so I don't take anything for them at the moment. Sometimes I find that increasing my potassium helps decrease the frequency of the ectopics. And, I use a magnesium supplement (Natural Calm) that really calms down my nerves at night. The magnesium doesn't fully eliminate the ectopics, but it helps a little.

@Sushi- My cardiologist said to just quit taking the beta blockers. I was already only taking 1/4 of a 25mg atenolol tablet at the time. I'm not sure I could have cut the 1/4 tablet in half again. Stopping the atenolol was generally ok and I had only mild rebound symptoms. I had a much harder time stopping the metoprolol, that was a horrible experience I never want to revisit. Rebound tachycardia, ectopic beats, hot flashes - all worse than my "normal" symptoms.

Hi All - Am wondering if anyone has had a similar experience after stopping beta blockers. I tried metoprolol then atenolol after having issues with tachycardia and ectopic beats last summer. The beta blockers made me feel horrible and I also think they made things worse for me (more severe adrenaline surges, BP swings, exercise intolerance, tingling hands and feet). I stopped taking them in November and my body has been readjusting since. My BP has become less liable and I have been able to go for regular walks, which together make me feel human again. More recently though, I feel like my sympathetic nervous system has restarted itself and I'm having trouble staying asleep at night. I can fall asleep for 3-4 hours, then I have the hardest time getting any additional restorative sleep. Has anyone experienced something similar post drug regime changes? How did you manage your symptoms?

I caught covid19 (presumably omicron) in January. I too had a higher than normal HR in the days leading up to my initial presentation of symptoms (fever, aches, chills) and for the first 24 hrs of symptoms. My HR was around 90 bpm while sitting. Dont want to know how high it was when walking around! I also had a ton of palpitations - PVCs and other ectopics. The HR came back down after I got my fever under control. But, I ended up running a low fever for about 6 days. The ectopics returned to their baseline level when the fever came down too. I spoke with my cardiologist and she said the tachycardia and ectopics are from the fever and inflammation caused by the virus. Something like our HR can go up by 10 bpm per degree of fever. I think mine went up a bit more than 10 bpm. I tried taking some atenolol to help and it didn't do much - Advil made biggest difference. That, and lots of liquids.

@PistolThanks for sharing your experience, which sounds like it was quite intense. I'm trying to do small things to stay upright, as you mentioned. For a once it is freezing cold here in Houston and I would love to just sit outside in the sun and get fresh air in my lungs. It should be warm enough in a few days and hopefully by then I will want to try a short walk as you suggested.

@Yhoun, thanks for sharing your experience. Yes, now that I can be out of bed for more than 5 mins, I'm wearing my compression tights and am trying to stay hydrated with electrolytes and coconut water. I also have noticed some tingling in my hands and dizziness as well.

Hi All - Am wondering what experiences people have had with covid19 lately, particularly with omicron. Unfortunately, my husband was exposed by a vaxxed family member New Year's Day. He gave it to my son, who gave it to me, then I gave it to our daughter. My husband is vaxxed and boosted, but I am only double vaxxed. I started having symptoms last Tuesday - low fever (99-100F, although it has jumped to 101F at times), elevated HR (85-95 bpm at rest, normally b/w 60-75 at rest), elevated BP (my elevated BP is 120/80, normal is 10-15 points lower), along with frequent PVCs and PACs. As long as I keep the fever close to 99, my HR seems manageable. Spoke to cardiologist and she said there isn't much to do, just wait it out and take Tylenol, Advil, and my beta-blocker when needed. She also mentioned that the fever and inflammation from covid19 is causing the elevated HR and increased premature beats. Has anyone else had similar symptoms? How long did your symptoms last? And, my apologies if there is a recent post on this topic. I looked around for one, but the posts that include the term "covid" are all over the place with regards to content.

@NinSorry to hear you are dealing with this after not having issues for a while. I don't have much advice to give, but I usually tend to have more "episodes" (adrenaline surges) while seated or laying down as opposed to standing. I have been diagnosed with pelvic congestion syndrome (by ultrasound and subsequent MRI), which causes pooling of blood in my abdomen. This is likely from having multiple kids. Maybe sitting for a few hours caused blood to pool in your abdomen and this caused things to flare suddenly?

@Sushi- Got it on the tagging! I am new to posting, but am getting the hang of it now. I see on the Strattera regarding the high norepinephrine levels. I have had my metanepherines (blood levels) and norepinephrine/adrenaline measured by a 24hr urine collection. My norepinephrine was in the normal range and my adrenaline was undetectable in both assays (at least below the measurement thresholds used by Quest). I have always wondered what the low adrenaline levels indicate, or if this is "normal". I will ask my cardiologist about this at my next appointment. And that stinks about afib likely being related or caused by dysautonomia. Yes, your are right. Another thing to keep in mind! Did you figure out you had afib b/c you sensed something was off or was it found on a monitor? I sometimes wonder if beta blockers cause afib or even some of the other symptoms we deal with - I know these drugs are very useful for some, including some with dysautonomia, but since they mess with the adrenal hormones I won't be surprised if they through things off in other parts of our bodies too. @MikeO- that is nice that you can see the premature beats on your home monitor! At least you know what it is and that it isn't anything more serious. I definitely recognize that pattern. I wish the home monitors could tell us if these are PACs or PVCs, not that it matters I guess. For me, the PVCs just make me a little more nervous. Although, not sure if that is a reasonable fear or just me being weird about it.

@cmep37- I know this thread is over a year old, but how are you doing now? What eventually happened with the pacemaker discussion? I too have an overactive vagal nerve and have also experienced a number of the bradycardia symptoms you described, but my symptoms largely resolved after stopping beta blockers (I tried metoprolol and atenolol, failed both). I definitely got tingly hands and feet when I was on the beta blockers, particularly when my heart rate was low in the evenings. I am kind of wondering if the beta blockers actually made things worse for me. Am hoping and praying things improve with time.

Thanks, MikeO! Which home heart monitor do you use? I have a BP cuff and older Fitbit watch, neither capable of doing an EKG. But, I see some of the newer Fitbit models do have EKG capabilities now.