MeganMN

True enough, but the beta blocker is preventing the tachycardia so it seems like it would be fine. It is a vasoconstrictor and would raise BP but for most of us that is not an issue! Anyway, your mileage may vary but I have had to take it some in the last few months and it has been okay! My pharmacist said it was not an issue for short term.

Oddly enough, I have felt better with less symptoms when I take the Sudafed, but according to the pharmacist they are okay to take together.

At work on Sunday I had a very stressful confrontation at work and ended up crying, getting all splotchy and flushed, and.spent the next TWO days fighting the fallout. I had a horrible headache, super dizzy, almost passed out in the kitchen, exhausted, felt horrible. Is there anything I can go to shorten the recovery time or mitigate this reaction? It was.horrible, and obviously stress cannot be completely avoided!

Yes, I do not like it at all either. I t is really hard because when my HR is low they are worse. Yes, Propranolol is a beta b!ocker. In a low dose, it seems to help me but if I take a bigger dose it is no good, my HR is too !ow.

@ScottS thanks again. I am trying to incorporate all of the things that I am learning into my new routine. I think I that the biggest challenge that I face is that I am the wage earner in my family and have three small kids that we are also homeschooling. We live on 40 acres and have to do a ton of physical labor just to get by. I am finding it increasingly difficult to do the things that I need to do for myself. There are no magic answers to this conundrum, of course, but it is proving to be very difficult. Most days if I can drink enough water, get enough food, and manage to scrape by, it is a win. I am constantly walking uphill it seems. We will see how this all plays out. I find myself getting depressed, having it put a strain on my relationship with my kids and husband, and affecting my job. I will take all the tips and tricks that I can get.

Do not feel guilty. I do a ton of stuff. But I do it because I have to and feel like poop most of the time. As a result, I have even worse symptoms because I cannot take care of myself.

I get them all the time, that is how I know it is time to take my Propranolol, haha. last night my rate was 42 because every other beat was ectopic. Ick. But they are not harmful, from a doctor's point of view anyway. They are very distracting though. I find them less with the Propranolol.

@MomtoGiuliana thanks! I have also been reading up on things and it sounds like although the Beta Blocker is keeping my heart rate lower, I still probably have a lack of blood flow to the brain , which the beta blocker obviously did not fix. Then, the normal BP is because my body is still trying to get blood up to my brain, so it is compensating. Weird syndrome. So even though vitals are normal, blood is still not getting where it should so it causes symptoms. Sheesh, crazy bodies.

Thanks everyone. I am waiting for my appointment on January 16th to see the electrophysiologist. No one else has been super helpful. Hoping he will be. Will keep slogging through. Thankfully I do not work much, only two days a week. It does feel awful though!

After doing so me more research, it sounds like disequilibrium. Now to make it stop!!

@ScottS. Vitals are always normal, but I will definitely try the above techniques. It is the weirdest feeling. Hit me and today at work and felt all pukey and clammy for a minute. It is almost like being in a boat or something, not vertigo, but off balance and feeling like I might just wobble bobble over. Sorry, it is hard to explain. It puzzles me because I just do it understand its origin. I will certainly try what you suggested though! Thanks!

Sorry for yet another post, but I have no where else to get info! I have been on Propranolol now for over a month- dose depends on symptoms but it is usually 10mg in the AM, 10mg again in the afternoon, and 20mg at bedtime. My heart rate and blood pressure seem to be fairly stable with this dose. If I do not take enough, my heart rate begins to creep up again. The problem that I am having now is that no matter what my vitals are, I am still dizzy. I only feel super dizzy at work (on my feet all day for a 12 hour shift, busy, walking around). Just checked my vitals and my heart rate was 80 and my BP was 120/78 and I am still feeling super dizzy, with nausea, and getting sweaty/clammy. I do not know what to do about it because my vitals are normal! Any thoughts?

@Pistol thanks- it was actually awful- my hubby did not deal with it very well, he felt pretty upset. This whole thing is just so goofy and life changing. That is the part that most doctors do not seem to get.

So I was reading all these posts and not really thinking about any of it related to me and then last night, my poor hubby wanted some intimate time and I completely freaked out and felt like I was going to die. My hands and feet were tingly, felt super heavy, my body felt weird, cannot explain it, felt like my blood pressure maybe was super low but it wasn't when he checked it. I felt like my heart was beating funny but it wasnt. I could not get a breath and kept having to yawn and then got all trembly and twitchy in my legs. it was AWFUL and my hubby felt like poo because he felt like it must be because I didn't want to be intimate. The whole thing was so rotten. Never happened to me before. I always flushed but never anything like that!!

I have been trying to exercise a little bit almost every day. It seems like when I exercise, I feel really good that day and then have horribly high heart rates and feel gross the following day, and then back to better the next day.

Thanks guys! A win today, yesterday was awful and today I made it outside with the hubby and kids to have a fire, got dogs, and tea by the fire in the new snow! Felt sooo tired with chest pain the whole time walking, but had fun anyway!

@potsiebarbie that is exactly what I was looking for! has anyone actually heard a good rationale for a doctor about what is going on physiologically to cause symptoms still? I am having such a tough time wrapping my mind around this. As a nurse and someone super scientific, I just do not get how there can be so much vagueness with this diagnosis. What causes the symptoms after the Beta and Alpha blockade with the meds?

Hello again! Was curious what type of breakthrough symptoms you all have? I have felt pretty good on the Propranolol, but oddly, still find myself feeling off-balance/kind of dizzy, sometimes shaky, sometimes nauseated, sometimes super sweaty, like the response to the fight-or-flight without the fast heart rate. I guess that my body is still struggling with the adrenaline but the Propranolol is keeping my heart rate down? What are your experiences with this?

I have been feeling this way since I began having symptoms in early November. Could it also be a side effect of beta blockers? I feel like I am totally zoned out all the time. My husband has even noticed it too. Very discouraging.

Here is another one that is more technical but super good. This one talks about Propranolol being LESS likely to cause mast cell activation. So who knows.... https://www.sciencedirect.com/science/article/pii/S1566070217303387

@lamp_girl here is an article that I was just reading, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3545645/ , in which they talk about Beta Blockers definitely exacerbating MCAS. I have also been wondering about this component. I have been having similar issues since starting the Beta Blocker. I have been doing some research and will try to send you some more links. Sorry you are having this experience. Will send more soon! Here is.another one! https://www.naughtylittlemastcells.com/start-here/

@Pistol Thank you so much for the response! I guess, to answer the question about wanting to be off the meds, it is probably because I am still somewhat in denial about the chronic possibility/probability with POTS. I have had two episodes in the past with this and it went away both times without much treatment. This time, it has lasted longer. I really do not like taking medication. I know, it is better than feeling like poop, but it is difficult for me. I have always been super active, healthy, eat well, and do not like medications! But yes, I feel amazingly better on the Propranolol, and never even started the Florinef, and still feel a million times better. I guess I just hope, deep down, that maybe this will pass like the last times. The nurse at the Cardiology office was probably trying to let me down gently though when she told me not to taper at all until I saw the Electro-Physiologist in mid-January.

@JuliettOscar This is an older post, but I agree that you have to push for what is in YOUR best interest. I have had generally good care, but the Inpatient doctors at the hospital immediately diagnosed POTS and then the first Cardiologist agreed, but the second Cardiologist that I went to for follow-up said it was more VVS even though my blood pressure has never, ever dropped. He did get me sorted out with a Beta Blocker that works, but only after he tried to taper me off and then my heart rate went right back up to the 150-160's. He then tried to say it was just a rebound effect from being off the Metoprolol, but regardless, he still agreed to get me an appointment with the Electro-physiologist from Minneapolis. I think that in medicine, we have to advocate for ourselves, because no one else is going to! Good luck with getting in to the right people! Keep at it.

I have a question for those of you that have intermittent flares of symptoms. The Cardiologist has said to take the Propranolol for at least two weeks before I taper down. How do you know when you can back off? Do you just take medication all the time or do some of you take it just when you have symptoms? Not looking for advice, just what some of you have done. How will I know when/if this chills out and I no longer need the meds? Thinking too much, I know......

Well, took my first dose of the 10mg Propranolol today, they wanted me to take 30mg twice a day, or less if I get too slow. I took 30mg this morning and 20mg this evening and other than kind of sleepy, have felt amazingly normal today. Hope it continues!!!