Pots And Dysautonomia That Doesn't Have To Do With Position Changes?

[MissPatient20]

Hi everyone, I have a question (still new at this diagnosis, not-so-much with my lyme diagnsosis. This is secondary to lyme).

I do have issues with standing up sometimes, where my blood pressure will drop and my heart rate will shoot up, but I also have a more debilitating issue where my blood pressure and heart rate will go crazy despite laying down, sitting up, or standing. Position changes often have nothing to do with it. For example, I'll be sitting on the couch, leaning back in a nice propped up position, and all of a sudden I'll feel like I'm going to pass out or lose consciousness. I'll check my blood pressure and the numbers will be super close together, like 90/70 or 80/62. I'm not even on my feet when this is happening! I'll also get surges of a rapid heart rate, even when I'm not moving.

My heart rate will sometimes shoot from 50 to 140 in a matter of seconds, when I'm not even doing anything! It feels like anxiety or a heart attack, or an irregular heart beat (like atrial fibrillation), but I'm not panicking and I have had normal EKGs.

What the heck is that?

Are there meds for that? I believe it stems from central and autonomic nervous system disfunction...so would like an SSRI help?

My doctor prescribed me Xanax but I'm too afraid to take it, because I react to EVERYTHING I take. He also gave me DDAVP to see if stopping the urinary frequency would bring my blood pressure up, but I reacted negatively and my blood pressure actually plummeted at night.

Thanks for the input everyone

[Amber]

I can relate....sometimes I can't even sit up, let alone stand, without feeling like my heart and bp are going crazy. I feel like I'll pass out if I don't lie flat. I actually more than met the criteria for pots even in the sitting position so its certainly possible to have symptoms even when you're not standing up.

Have you been checked for adrenal gland problems like pheochromocytoma (sp?)? Sometimes the adrenals can spit out too much adrenaline and that can make your heart rate go haywire. Also make sure you aren't getting any stimulants like caffeine either in foods/drinks or even in supplements. Also consider whether these episodes might occur after eating as that can cause blood to rush to your abdomen for digestion. This can cause drops in BP and rises in HR. Have you tried a betablocker to slow your heartrate or midodrine to raise your blood pressure? They might help.... I can't say about the SSRI's because I have always reacted badly to them but some people with dysautonomias do use them.

good luck and good health... 8 )

[fighting4health]

I can relate. My numbers are not as drastic as yours, but my BP and heart rate go up and down in random ways. Sometimes they are way up when I first wake up and sometimes they are way low when I'm exercising and then other times they are the opposite. In general, when I stand in place my pulse elevates a lot, but most of the time everything is pretty random with no pattern.

[cmtaylor5]

I had identical symptoms when my POTS got really bad (I think I've probably had it mildly my whole life) right before I was diagnosed. Since about 3 months after being put on a beta blocker 5 years ago, I no longer have the suddenly speeded up heart rate at rest (which was not PSVT, but just rapid normal rhythm) or the narrowed pulse pressure. For a few months prior to my diagnosis, I had the narrowed pulse pressure for most of the day and it really made me feel awful. I was almost completely non-functioning. Now I lead pretty much a normal life with some restrictions on activity like climbing lots of flights of stairs, running, or heavy exercise.

Carolyn

[daisy]

I too have the erratic pulse and bp changes. Mine are due to other heart arrythmias that have developed which are a separate issue from POTS. I have afib and other atrial arrythmias in addition to POTS. When I am sitting and my pulse goes from very low and shoots up like you described that is usually inappropriate sinus tachycardia for me. If it does that and is also irregular, it is usually an atrial fib run or an atrial tachy run. When it gets super high, it is SVT. All of these have been documented on heart monitors over the years and it's funny because now I can identify what type I am having and when (and I was usually right when we checked the monitors). My POTS tachy happens upon standing or if it is really acting up it will happen if I go from a lying to sitting position.......have you seen an EP cardiologist? I am not in any way suggesting that you have these arrythmias and POTS/dys can certainly cause many variations in our heartrates/bps at any given time (much of which makes no sense at all) but this is my story. I thought it was all related to POTS until I had thorough testing done and these other arrythmias showed up.

I hope you can get some answers - I can relate to how awful those sudden tachy bursts can make us feel.