MeganMN

Thank you, for an appointment mid-January with an EP so we will see where that goes. Wondering if I should keep some type of journal of log between now and then.

I used to have TERRIBLE episodes of flushing, sweating, tachycardia, tight chest, etc. that required me to take Benedryl on a regular basis. The doctors never figured it out, but assumed it was some kind of wacky out-of-control histamine response. It went away for the most part and only happened when I was super stressed out, upset, or coming in from the cold. It has started to happen again and now I am wondering about a possible connection to the POTS. It seems that it could likely be some sort of MCAS component but when I mentioned it to the Cardiologist he looked at me like I had two heads. It now seems to be rearing up again and I hope it is not from being on the Beta Blocker. Anyone else have this experience? Eek- it just keeps coming!

@Pistol Thank you SO much for sharing! What a rough road! I am thankful that you have not had any more episodes, but unfortunately at the cost of lots of meds and decreased quality of life. This whole think is so scary and I read and read about it and see all the time about how it does not increase mortality, but it has MAJOR quality of life effects! That is the most distressing part. Did any of you with adrenergic have flushing episodes? I have had those for YEARS but never put the two together. Thanks again for sharing!!

Well, back on Metoprolol for a few days until I can get to the Pharmacy, but the doctor is going to try a lower dose of Propranolol and get me in to see the EP that comes up from Minneapolis once a month. Yay! Glad to have a plan. Thanks to all of you!

I am newly diagnosed so am still figuring this out but I have entire days that are fine, sometimes just bad mornings, sometimes whole bad days, and had almost no symptoms for years, then it came back. So, yes, I think you can have symptoms stop for awhile, be intermittent, or change depending on your hydration, stress level, etc!

@Pistol thanks! I am hoping the Cardiologist will be willing to try to use a lower dose of Propranolol. Will find out tomorrow. Today I just smiled it and took a low dose of the Metoprolol instead. Might have to do that until I hear from him. Got pretty scared with the Propranolol.

@StayAtHomeMom I think the dose is too high. I am SUPER sensitive to medications. Sounds like the Propranolol will be in My system for another 24 hours so I am going to just wing it and see how tomorrow goes without. I sent a message to the Cardiologist and asked if I can get an Appt with the EP that comes here once a month. Also asked about getting the short acting lower dose Propranolol instead of the Extended Release higher dose. One.Day.at.a.Time!

I want to scream (or cry!). Day Number Two at work today and was able to drink lots of water. The Propranolol seemed to help with my resting rate in the 60-80 range and my upright rate in the 100-120 range. I am now terrified though because I had several episodes where I almost passed out and my HR was about 37. this just feels crazy. . Feeling super anxious and not wanting to deal! Am not going to take the Propranolol tonight. Ick. Now tons of palpitations. Sorry for the rant. Tough day.....One more to go.

@StayAtHomeMom and @kafie Thanks for sharing! I, too, would love to have them look a little deeper at the cause, or if it is Hyper, or what. The Cardiologist I saw sounds like he is not fully convinced that it IS POTS even though that is what all the other doctors figured. It is frustrating to work in the medical field and feel like they just throw darts at the dart board to try and figure out what works. Anyway, thanks for sharing. The biggest hurdle for me today was that after the Propranolol, not only is my heart rate better, but I no longer feel like I am drowning in anxiety. Ever since the passing out episode and hospitalization (then my mom died the next day!) I have felt super anxious and on edge. Tonight, I feel *almost* normal for a bit.

@StayAtHomeMom Thank you so much for the encouragement and suggestions! Today was my first real day back since I first passed out at work on November 4th! I had a couple of partial days, but today was the first big test. I am scheduled all weekend. Hope the next two days go better than today, but I am super thankful that I could go in to the Cardiologists office and get a prescription. I am hoping the Propanolol and Florinef will help enough for me to tough it out. I had to sit down/lean against the wall a couple times today but once I got the Propanolol on board it was okay. I am nervous about it- I have to work because I am the only income with 3 little kids! I would take a look at the Garmin HR tracker. We do not have a smart phone, but do have a tablet if it needs an app or something. My biggest struggle is drinking enough water since I am running around the hospital all day. Anyway, thanks for the support- it helps! Megan

This may not be something that you want to share, but I am REALLY hoping to hear some of your stories about HOW you were diagnosed. I am feeling frustrated because I passed out at work, got admitted to the hospital, and a tentative diagnosis was made based on my cardiac monitor readings that consistently showed extreme tachycardia when standing. I had no labs to check my adrenals or cortisol, I had no TTT, I did not have any further workup. Is that normal? I feel like there should be a bit more investigation to sort out what exactly is going on, before they just throw meds at me. Granted, I am glad for the meds, but would also love to know that we are not just shooting in the dark! Anyway, I am leaning towards asking to see an EP with the same group that comes to our area once a month. I am also leaning towards asking for the TTT and possible some testing of my Cortisol, Adrenal Function, etc. Also wondering about the Florinef because the Pharmacist really cautioned me about it as I had a SEVERE reaction to Prednisone 6 years ago that led to my first episode of POTS-like symptoms. Where does POTS end and Adrenal Fatigue/Insufficiency begin? How closely are they related? I would really like to hear from you, though. How many doctors did you have to see? What tests did you have done before the official diagnosis? I feel like it might help me to know what others have done. The Cardiologist that I saw was super nice, but just does not seem all that concerned about anything and almost acts like the tachycardia is not real, or that it is coming from hypotension. It is making me really doubt myself and doubt how to proceed and what to push for. Thanks to all of you!

Thank you all so much for the replies! This site has been so helpful and informative. After having 2 days of low to normal heart rate and low blood pressure, I came back to work today for my first 12 hour shift since all this began (6 weeks ago). My heart rate jumped all over the place and thankfully, I work in the same building as the Cardiologist office, so I stopped in to see them when my heart rate was cranking in the 150's. I was flushed, sweaty, shaky, dizzy, and anxious. They brought me in pretty quickly to a room and did a quick EKG, it was Sinus Tach. with a rate of 135. The nurse called the doctor and he felt that I was having rebound tachycardia from tapering the Metoprolol. He added 60mg Propranolol ER once a day. Still feeling frustrated about all of this. I feel like they should have done more testing to sort out what is actually going on, instead of just relying on a 24-hour cardiac monitor and one Orthostatic set of vitals. Who knows. Just glad to have a plan because I am scheduled to work all weekend. Thanks again to ALL of you! So grateful for my new far away friends : ) Megan

Sorry for the many postings/questions, but still trying to figure all of this out and how this is going to effect me in the long term! So I went to the Cardiologist on Tuesday and he is not totally convinced about the POTS diagnosis, even though I have had two MAJOR episodes now with heart rates in the 150's when up for extended periods. He seems to think it may be Vasovagal Syncope, which just does not make sense to me, because all of my orthostatic checks were higher Blood Pressure with higher Pulse. He thinks that because I had a prodrome (clammy, nauseated, heart pounding) before I passed out, that it was more likely to be a vagal response. Interesting. He recommended me tapering off the Metoprolol and adding Florinef tomorrow if I am still having symptoms. So I have been off the Metoprolol for two days now and the really odd thing is that I am still having weird symptoms of dizziness, head fullness, throbbing legs, etc., but now my heart rate is randomly in the low, bradycardia category, with occasional spikes when up (but not every time) and my blood pressure is REALLY low. (100/60 when sitting, and dropping into the 80's systolic when up). I typically have not ever had a BP drop like that when standing, it usually goes up. I am thinking that I should still add the Florinef because of my low BP. Have any of you ever had an episodic period of POTS symptoms followed by some weird HR/BP drop, almost like some strange rebound thing? Just curious, this all seems so bizarre. I feel like I am trying to figure it all out on my own because the doctors are just throwing random things out there without really knowing what is going on.

Well, saw the Cardiologist today and he is wanting to taper me off the Metoprolol, start Florinef, and follow up in a week. He may add Propranolol at that time, but of course, I had no symptoms at the time of my appointment, which is crazy, because I had been tachy all day up to that point! Do any of you find symptoms only manifest or are worse in the morning? I am super nervous about the Florinef as it seems like it would potentially cause some adrenal insufficiency, but will give it a go. Are there many of you that found success with just the Florinef and no other meds?

The chiropractor should be able to do the Epley maneuver. It can be helpful for vertigo.

I wish that I had advice for you but I am new to this whole thing myself and trying to sort it all out. I really just wanted to tell you that when I read your post my heart went out to you. I, too, have three small children and this is super hard! I often do more than I should and yet still feel like I am not doing enough. Did you ever wear an event monitor? Is it possible that you are having more than just tachycardia, but having SVT or some other tachycardia that is not POTS? Wishing you peace and comfort right now. You are enough, because you are their mom! Hugs to you.

I am heading to the Cardiologist on Tuesday for my first Cardiology evaluation after being diagnosed by a Hospitalist a month ago. I have been on Metoprolol with reduction of symptoms but feeling super tired. I am trying to compile a list of questions for the Cardiologist so that I can really come away with a plan. Would love some help/suggestions on things that might be important to ask! Here is what I am thinking so far: - Should I see an Electrophysiologist? - Would a Holter/Event Monitor be at all indicated? - Should any further testing be done to determine type of POTS (Hyper, Neuro, etc) before adding more treatment/medication? - Is another Beta Blocker something we could try (Propranolol, Ivabradine, etc)? - Since this was thought to be viral onset, what, if anything, should I do in the future with illnesses, to prevent/minimize symptoms? Would love suggestions on other things that may be important to ask that I am not thinking of. Thanks so much!

Thank you so much to everyone for the responses. I am going to see the Cardiologist on Tuesday and am really inclined to ask for Propranolol instead of Metoprolol. When I had the undiagnosed 'episode' seven years ago, they gave me Propranolol for a short time and it worked really well without all this sluggishness and low heart rate that I am experiencing now. I was trying to research and do some homework before I go, because I have heard from others that this particular Cardiology group really does not like to prescribe Propranolol, but I already know that it helped me in the past, so I am feeling a bit frustrated. Any ideas on how to suggest it to the Cardiologist? I definitely feel better with the Metoprolol than I did before, but I feel so out of it, too. Thank you so much to all of you! Dislike that any of us have to be here searching for answers, but glad to know there are others out there to lean on.

Hello all, I recently had syncope in the hospital where I work as a nurse- good place to hit the floor, I guess. I had been having noticeable tachycardia and dizziness for a few weeks, but had also been dealing with major life stress and have three young kids, so chalked it up to not taking good care of myself. I ended up getting admitted for observation and the telemetry monitor showed significant orthostatic changes. My blood pressure always went up but my heart rate consistently went from the 80's to the 150's. I had a similar episode 6 years ago after a course of Prednisone and the doctors at that time did not figure anything out and I never got diagnosed. This time, with my history as well as obvious positional tachycardia, they diagnosed me with viral-onset POTS and sent me home with a script for an antibiotic for a wicked sinus infection and a referral to cardiology. When I think back on my life I can connect so many dots that all make sense now in light of the diagnosis. It seems to be right on with how I have been feeling and have felt in the past. I was started on Metoprolol 25mg twice a day with the potential addition of Florinef. My blood pressure before the Metoprolol has always been low, in the 100/60 range. I felt amazingly better on the Metoprolol at first but am now having to cut the pills in half because my blood pressure is too low, making me dizzy again. I have recently noticed that one day, my heart rate might be in the 130's when up, and other days it is in the 50's and 60's. I am struggling with what to do with the Metoprolol. I like that it makes me feel better most days, but I cannot seem to get a handle on it because there is such day to day variation in my heart rate and blood pressure. So I feel good when the med keeps my heart rate in the 60's to 80's with a normal BP, but feel like poop on the days when my heart rate drops into the low 50's and my BP drops as well. Any suggestions for what has worked for those of you with wildly intermittent symptoms? Is there anything that can be taken on a more 'as needed' basis for heart rate control? Thanks! It has been so helpful to read through this forum! Megan