Normal HR now, but REALLY low BP

[MeganMN]

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. 

[WinterSown]

1 hour ago, MeganMN said:

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. 

POTS isn't the only dysautonomia, there are many of them. My EP , with a wink in his eye and big smile, calls it my NeuroCardioVasuVagally thing. Once in a while my numbers do POTS-like jumps, but generally not. I I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. 

Over the next few weeks and months your doctors are going to tweak your diagnosis along with your drugs to find the best management that works for you. We are all so very unique that there really is no one-size-fits-all drug or treatment. We don't use drugs to raise my BP, instead he ever-so-slowly took away drugs that were lowering it too much. I saw him a  few weeks back and it's the first time in over a year he didn't tweak my drugs--not many left because I do exercise and eat right which is a huge part of management. I certainly understand your frustration but it can be a bit of a bumpy road for a while until you get your meds and management worked out. During this time be kind to yourself and acknowledge that it's trial and error and you are on the way to being the best you can be. 

 

[Derek1987]

1 hour ago, WinterSown said:

POTS isn't the only dysautonomia, there are many of them. My EP , with a wink in his eye and big smile, calls it my NeuroCardioVasuVagally thing. Once in a while my numbers do POTS-like jumps, but generally not. I I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. 

Over the next few weeks and months your doctors are going to tweak your diagnosis along with your drugs to find the best management that works for you. We are all so very unique that there really is no one-size-fits-all drug or treatment. We don't use drugs to raise my BP, instead he ever-so-slowly took away drugs that were lowering it too much. I saw him a  few weeks back and it's the first time in over a year he didn't tweak my drugs--not many left because I do exercise and eat right which is a huge part of management. I certainly understand your frustration but it can be a bit of a bumpy road for a while until you get your meds and management worked out. During this time be kind to yourself and acknowledge that it's trial and error and you are on the way to being the best you can be. 

 

"I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. "

What do you mean remaining conscious for the reset? The first and worst time i fainted I was fully aware of where I was.vision loss, hearing loss, and paralyzed .I couldn't even put myself on the stretcher when the paramedics got there but I was coming out of it. When I was put back in the ambulance, the paramedic said my blood pressure is coming back up. On a side note, my wife told me the paramedics were all smiles and not worried and I was thinking I was dying. Worst experience in life.

[Pistol]

@MeganMN - I have NCS ( same as VVS ) and hyperPOTS. The NCS diagnosis came first. I had several monitored syncopal episodes with my HR and BP being extremely high. My first TTT I passed out after a rise followed by sudden drop in HR. They started me on Metoprolol for this and it also initially dropped my BP and HR but this was only a temporary effect. Due to my high BP I was never a candidate for florinef but did briefly take midodrine without results. Yes - in VVS the BP usually drops, causing the syncope. I also get a prodrome ( called presyncope ) before passing out from VVS, however I also pass out and take seizures when my BP suddenly goes up ( that is the hyperPOTS part ). I also can tell before the episode with this but the symptoms are different. --- Beta blockers often cause bradycardia and low BP ( that is the desired effect ) and it may not be the right med for you. NCS, POTS and orthostatic hypotension are all dysautonomias with different mechanisms and therefore need different meds, there is no one-for-all. Just keep trying what your doc recommends until you find the right combo - we all respond differently and therefore need a lot of trial-and-error. Be brave and hang in there!!!

[StayAtHomeMom]

My PCP says metoperlol can cause rebound tachycardia. I imagine since your doctor wanted you to taper off it may have way more consequences when coming off it. I hope your BP and HR settle down for you. Have you tried using a fitness tracker that tracks your HR? That helps me a lot. 

[WinterSown]

7 hours ago, Derek1987 said:

"I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. "

What do you mean remaining conscious for the reset? The first and worst time i fainted I was fully aware of where I was.vision loss, hearing loss, and paralyzed .I couldn't even put myself on the stretcher when the paramedics got there but I was coming out of it. When I was put back in the ambulance, the paramedic said my blood pressure is coming back up. On a side note, my wife told me the paramedics were all smiles and not worried and I was thinking I was dying. Worst experience in life.

I don't lose consciousness. I used to collapse but I've been in PT for well over a year now--I've trained for balance, strength, core and gait. It's unlikely I will smash my face or get large  angry bruises on my shins anymore. The worst part is not the collapsing; I think the worst part is feeling your own personal universe explode and come back together again in your own body. Imaginative words for unique sensations that can hardly be described yet my cardiologist agrees. Everyone is their own person and how your nerves and their reactions lay out are as individual as fingerprints. 

[yogini]

People disagree on this, but I don't think the category of dysautonomia matters all that much.  Many people have a range of symptoms and have both POTS and NCS.  The treatments and mediations you can take are largely the same - beta blockers and florinef are used to treat both conditions.  It just depends on what works to make you feel better.

 

[MeganMN]

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

[StayAtHomeMom]

9 minutes ago, MeganMN said:

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

I use a garmin HR. When I don't feel good I can do a quick check. It also checks every 2 minutes or so and I can check the past 4 hours on the Garmin itself and see a trend, high, and low. Sometimes I have symptoms and it is only showing 115 so I will push it. Until it gets over 120, then I go lay down. It really helps me and it sounds like it may help you if you are working those long of hours in a medical setting. 

It is good to see that you are back to working regular hours though. You must be feeling better then you used to. Hope the propranolol helps. 

[MeganMN]

@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

[StayAtHomeMom]

18 hours ago, MeganMN said:

@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

It works on a computer as well. When you plug it in to charge you hit a few buttons and it downloads your information. I am not sure you can buy the HR anymore but there are newer ones. I like garmin because it is waterproof. Unless fitbit has changed, I don't think any other comparable fitness tracker is waterproof. 

Maybe get a water bottle you could clip to your belt loop? Or maybe rig something to strap to your leg

Glad the meds are helping so much. Be careful this weekend. Don't overdo it too much. 

[MeganMN]

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]

8 minutes ago, MeganMN said:

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.

Is it possible your body just needs to adjust to the new medication? Could the regular every couple of hour propranolol be a better option then the extended release? 

[MeganMN]

@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!

[StayAtHomeMom]

They started me on the short acting. I think it was 5mg. Maybe 10. After a few weeks I noticed it was helping some things but made my breathing issue worse (which is my first and worst symptom that I still have). Then tried a calcium channel blocker. Then the metoprolol. I like the metoprolol much better. Helps my heart palpitations better than the propranolol for me. 

[Pistol]

@MeganMN - this happened to me as well. Maybe cut down the dosage until your HR goes too fats again and then go back up (if you doc agrees). With dysautonomia it is all about creating balance - and that is not a once-and-for-all thing. The meds have to start at the very lowest dose and then go up as needed - most docs do not get that. Best of luck for you!!!!

[MeganMN]

@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.

[MeganMN]

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!

[MeganMN]

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! 

[StayAtHomeMom]

Have you tried an allergist?

[Pistol]

I saw an allergist/ ENT to get checked for MCAS ( I was negative ). It's a blood test and urine sample. Best to ask an allergist as @StayAtHomeMom suggested. A cardiologist would not have ANY IDEA what you are talking about ( sadly ).