POTS Symptoms?

[Samantha S.]

Hello! This is a question for the people who have POTS. I was diagnosed last year with a very mild case of the syndrome. I recently got a pulse oximeter and BP cuff to monitor symptoms. I've noticed that my pulse and blood pressure are always high when I have symptoms.

I can also go days where I have no symptoms whatsoever and my BP and pulse regulate themselves perfectly, and others theyre both high and unstable unless I'm laying down.

So what this boils down to is this...does anyone else have POTS but with high pulse and blood pressure instead of low? And does anyone experience symptoms similar to how I do?

Thanks!

[Katybug]

There is a subtype of POTS called hyperandrenergic POTS which is known for patients having high BP and high HR upon standing. I know we have other members that have this particular pattern.

Also, I used to have the pattern you describe where I could have a few days symptom free and then, for no reason at all, wake up completely symptomatic one day. I don't think this is that unusual either. My symptoms are more consistent now but I happen to have other health issues that are contributing to my POTS problems. 

Welcome to our community,  btw.☺

[Stephanieann]

Yes, my pulse and blood pressure would both go up upon standing before I started meds. I also had tons of adrenaline surges and palpitations. My Dr didn't necessarily want to classify my pots as hyperadrenergic but I met most of the symptoms of it. I had consistent problems though since this all started in my last pregnancy. They didn't come and go. Although I suspect I've had issues with this since a teenager so I don't think it would be that unusual for symptoms to come and go. 

[Womble]

My bp, particularly the diastolic, spikes when I stand up.   I also get narrow pulse pressure, due the the diastolic rising faster than the systolic.  We're currently not sure if it then drops too low just before I pass out or not, because my home bp monitor throws up an error and refuses to give a reading once I'm symptomatic.  I've been told it's most likely the narrow pulse pressure that the monitor doesn't like.  I generally have relatively low bp, usually around or just under 90 over somewhere between 50/60 and when I stand it shoots up to 120-30/110-15 ish, higher if I'm having a really bad day. 

Over the years I've had periods of relative wellness, times when I have good and bad days and times when I have good and bad weeks.  The past four years it has got progressively worse, following a period of immobilisation for other reasons and good days have been rare enough to be memorable, iyswim.

I used to think there was no rhyme or reason to it, but am gradually learning it often relates to stress levels, quality and amount of sleep, diet and hydration.  When I have a very bad day out-of-the blue nowadays, I try to track back what I've done or eaten/drunk that was different and make a note, then if it happens again I can see a pattern emerge - which helps me learn how to manage it long-term.

[Amyschi]

Just wanted to say, Samantha, that I too have a similar presentation with POTS.  I have had dizziness mainly for many years, but then five years ago or so developed the  dysautonomia symptoms, (i.e. the tachycardia, palps, weakness), so my course was more of a gradual development and worsening, and not as severe as the usual POTS presentation.   However, I am probably a lot older than many of you here, 57.  There are more days than not (don't want to even say it!), where I am not tachycardic on standing, but then some days I am consistently, so what sets it off I don't know.  I too have wondered whether it can truly be POTS (I was actually diagnosed as a cross between generalized dysautonomia and POTS), so maybe that could be where you are also.  However, I find now that if I try to leave the house, or get up and do any kind of activity, my heart will definitely "react" and start to beat harder, etc, even if it is not definite tachycardia or a change in blood pressure.   I believe, as Stephanie said, that these is a reaction to release of adrenaline on and off, and I can definitely tell when this is happening.  When I tried to research this "on and off POTS," I did read where you can have it non-consistently.   I just hope it continues that way for you and others if they present that way!  Take any good days you can get, right?  I definitely agree with Womble, though, that it  will worsen depending on activity level or stresses, or sometimes for no reason at all.    I will be worsened just if someone comes over to visit or I have to talk on the phone to a company or something.   Even eating sometimes will trigger symptoms;  or if I lay down too long and then try to get up, so it's a "Catch-22" situation for sure.   And it is not because I am nervous doing it; this may  be my family just stopping by to visit.   It saddens me greatly, because I would almost rather people not come over because I know how difficult it will be for me to just carry on a conversation and visit, while trying not to show it.   And forget about trying to go out, right?   I don't know about all of you, but I have a hard time just telling others when they come over, for instance, that I don't feel well (I'm talking here severe symptoms such as tachycardia and weakness, feeling like you are going to pass out) and that I have to lay down.  This has been one of the hardest aspects of the illness for me, even more so than the limits it places upon us, or the fact that you have to decline invitations and stop visiting people yourself.    But that's another topic, right?   Unfortunately with this condition, there would be just too many questions/topics to post!   Everyone has been so helpful.

I am sorry to read, Stephanie, that you started to have problems after giving birth - I always feel so much for anyone dealing with these problems that is also trying to be a parent;  I can't imagine.   I hope you have a good support system.  And Womble, I am sorry to read of your extremes in BP/pulse and problems with fainting; also just your general worsening in the last few years.   I can relate to that.  Even though I have had milder problems through the years, I did not worsen until my early 50's, and am so grateful for that better time.  I know many of you are much younger and that saddens me, but I too have noticed dramatic worsening each of the last five years, which is kind of scary.   Maybe it gets harder to cope with as you get older!   The old body is not as resilient as it once was!   Don't mean to discourage any youngsters out there - I'm sure you will become much stronger because of all this and be able to handle it even better when you are older!   I can relate exactly to what you were saying though, Womble, that before, you had some good days and the symptoms might come and go, but now it is pretty much all the time without a break.   I hope that all of us have some stabilization and better days with whatever symptoms we are dealing with.  

[Womble]

Amyschi - I am 47, so not all that far behind you.  I seem to be starting to get some relief after starting Ivabradine - only went onto a therapeutic dose this week, so very early days, but today has been the best day I've had in a long time.  Hope you are able to find something that will help you too. 

[SarahA33]

Hi, Samantha. Welcome to the forum. I too have high HR on standing and additionally high BP, known as Orthostatic Hypertension. Like Katie mentioned above, I was diagnosed w/ hyperadrenic component and that is common. Here is a recent article written by Dr. Raj, a great POTS specialist and one of our medical advisors. There is a hyper POTS section.  http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html#Sec3

Amyschi - Sorry to read you are having a rough time w/ HR and symptoms. There are days where anything revolving around excitement (positive or negative) will fuel my adrenaline rushes, which leads to a higher HR, even flushing and tremors. I am easily startled and it takes me a while to settle down. Very easily overstimulated would be the best way to describe it. Before I found DINET, I had no idea why this happened to me. Reading that others had gone through the same situation helped me a great deal. With the right medications and non-pharmacological strategies (increased fluid & sodium intake, compression) introduced it has decreased my POTS symptoms significantly. Wishing you all the best!

womble, I'm so relieved for you that you've had improvement and that you finally seem to have caught a break.

Ivabradine has helped me tremendously. I'm not as fatigued and it controls both the tachycardia and palpitation's, I sleep better, too. These are just some theories. One thought is that with each beat the heart contracts and relaxes and every contraction pushes the blood out of two ventricles. When your heart relaxes they refill with blood. Something Ivabradine improves is Stroke Volume and ejection fraction (ejection = amount of blood pumped out of the heart w/ each beat, Fraction = blood % left within the heart)- which is basically the % of blood that is moved out of the ventricles with each contraction. A normal Ejection Fraction # is btw 50-70 (measured usually w/ an echo). I don't remember what mine was, but in a study I was in, it wasn't low,but definetely lower before taking Ivabradine, then with Ivabradine administration, it raised. Additionally, because you have less symptoms, are you less sedentary? Before I started Ivabradine I couldn't walk up a 1/2 flight of stairs. Since I've started taking it, I've had so much symptomatic improvement that I'm now able to exercise 3-4x a week. This in return  increased what's called "oxidative capacity" / "Exercise Capacity" which helped my symptoms.  http://www.cell.com/cell-metabolism/abstract/S1550-4131(15)00059-5     There is a large study completed on Ivabradine called SHIFT which studied patients in 37 different countries, which also surveys patients quality of life while in the initial phase of dosing and then again a 1 year later. It shows dramatic improvement in patients Symptom Frequency, Symptom Burdon and Social Limitation Scores.

[Amyschi]

Hi Sarah,

Sorry, I just saw this response.  Thank you for the great info.   How are you doing with the Ivabradine now?  I hope it is still continuing to help!.  

[SarahA33]

Hi, Amyschi!  Well, ivabradine is working too well now it seems!  I'm experiencing bradycardia for the first time, I had a hr of 37 at the doctor's office this past Friday. I never saw this one coming.  He thinks I'm overmedicated w/ the Ivabradine and also a bit from Clonidine. So, I cut the dose in 1/2. Hopefully it's the medication, if my HR hasn't increased in 2 weeks I'll need an implantable loop recorder put in.

How are you doing? I hope feeling as well as possible!

[Amyschi]

So sorry, Sarah, that it turned to bradycardia.  I do hope the reduction in dose will bring it back up.  I have noticed bradycardia during the overnight hours and early mornings even without being on any medication, so maybe it was too much for you.   A 37 is low, though; mine has only been down to the high 40's during those times.   I was curious whether bradycardia is also common with dysautonomia; didn't know it was,  Just another part of the dysregulation, I guess.    Best of luck, and please do let us know what happens; hope you will not need the implant.  

[astraboy]

Reading through some of these post remind me of how my problems started. It's mostly on and off, well the really rough symptoms are, but it hasn't gotten so bad yet. My blood pressure can either go up or down when standing, but I still get the tachycardia when standing.