Frightened and Dr. has no clue

[Always hoping]

I feel like I'm back at that terrible place where you know something is wrong but all your tests are great.  I'm scared.

I have always had a normal BP prior to POTS and then a low BP after I got sick (which I figured out 4 years after it started).  Salt, fluids iron infusions and Florinef has managed many of my symptoms for almost 3 years.  With meds I now run around 115/75.  Perfect.

About 2 weeks ago I got an irregular heartbeat after dinner.  Not that unusual for me for an hour or 2 after I eat.  This time it didn't go away though until I laid down.  For 4 days the irrational beats were going on whenever I stood or at some points when I sat.  Sounded pretty Potsie to me since it was completely positional.  Then on the 4th night I had an extra aggressive crazy episode of irregular heartbeats for about 2 minutes until I could lay down.  At first the irregular heartbeats went right away.  I just stayed on the couch to relax before I went upstairs to bed.  Unfortunately my whole body started getting this "revving" feeling that wouldn't pass and an occasional crazy heart rhythm would quickly come and go.  I just pounded my water and just tried to chill out while it passed.  It didn't (and I had to pee! Lol) so I kinda crawled to the bathroom and grabbed my BP machine on the way back to the couch.  When I took my BP it was 150/90.  Figured that it couldn't be right (for me) so I waited a bit and took it a couple more times.  Just kept going up.  Finally broke down, woke my sister at 1 am to watch my kid and made the call for EMS.  When they took my BP it was 190/100.

Thankfully all ekgs and blood work were fine and my BP went back to normal within a few hours so I was back home by morning.  I was just extra tired and had a headache for the next few days, but the irregular rhythms had finally completely gone away.  5 nights later it happened again.  I have no idea how high since I was already upstairs and couldn't go down to get the machine.  No crazy rhythms either thankfully.  I could just feel the revving and my heart beat in every part of my body.  It passed in a few hours and I went to sleep.  The next day I ran about 150/90 throughout the day.  Called my EP and they told me that they had no idea and have never heard of a Potsie with high BP (I know that isn't true).  Agreed to my cutting my Florinef in half as of yesterday morning.

So my problem now is that I have been going between high and low BPs since yesterday afternoon.  Low 90s/low 70s (I've been much worse off meds) and then into the 150s/90s (never for me).  I feel like a ping pong ball in a tournament!

Has anyone every had their BP suddenly go so drastically high for no apparent reason?  I'm just feeling as if my body is working up to some crazy crash.  And I just thought that I figured out my "normal" and it all went out the window.

Thank you for taking the time to read this.

 

Trisha

[Guest alkria]

In regards to your blood pressure - can your body change your type of POTS overtime and you could now be getting hyperadrenergic symptoms now, then the medication / salt is increasing it more significantly?

[Always hoping]

Thanks for replying.  I have no idea and my doctors "have never heard of it".  Doesn't mean it isn't possible.  

Be well.

[MomtoGiuliana]

I have seen over the years on the forum other patients describe symptoms changing over time.  I don't think this is highly unusual.

Of course as you pointed out it is possible to have POTS and high bp.  Other patients on this forum do.  I also tended towards highs (and well as lows) when I was most sick.  I also had episodes something like you are describing which I was told at the time were panic attacks--where my BP and hr would go way up (would wake me up at night or occur seemingly randomly during the day). 

By irregular heart beat do you mean fast or do you mean a feeling of skipped beats.  I have days and sometimes weeks of noticing a lot of PACs and PVCs.

Once I was diagnosed and started an SSRI and adjusted to it, I stopped having these episodes (and also most other POTS symptoms improved).  I have not had these symptoms now for about 14 years.  I still remember how disturbing they were.  Hope you doctor/s can be helpful.

 

[Always hoping]

Thanks MomtoGuiuliana.   I'm going with this being a "change" to my POTS but the completely sudden change is insane. (Like POTS itself isn't! lol).  I often get the skipped/extra heartbeats if any of my triggers start (hot, eating, not enough water, etc.).  That's normally by body's way for telling me to do something.  These were mostly what was happening for those 4 days straight ever time I stood, but there were also some really crazy rhythms going on.  Flipping, flopping, pounding and skipping.   That last episode before my BP went up was crazy.  I don't think my heart knew what to do.  Whatever it did, it seemed to have stopped the constant irregular heartbeat.  

Having my doctor tell me that Potsies BP don't go high and then try to put me on a med for high blood pressure (until I pointed out that maybe reducing my "low blood" pressure med would be better) didn't help me feel any more secure about what is going on.   

Thank you!

 

 

[Terri]

MomtoGuiliana, What SSRI did you start that helped your symptoms if you dont mind sharing?

[dancer65]

When I am having a bad postie day or pre syncope attack my normally low BP would spike not as high as yours but up to 175 /130 . My syncope nurse said this can happen she had a name for it but sorry I can't remember it darn this forgetful brain!

However I don't get irregular hr but tachycardia , hope you find some answers 

[yogini]

POTS patients can have spikes in blood pressure.  Some patients are on the high side - there should be info on hyperandrenergic POTS on the main site. But if you are on florinef that could also be the culprit in causing your high BP.  I would ask your doctor if these spikes are  something to be concerned about and whether florinef is the right medication for you.

[Always hoping]

Thank you for your replies.

I'm sorry you have those high rates dancer65. Crazy to go from low to those numbers!  Thank you for letting me know it does happen.  Not that you ever want someone to suffer, but it is reassuring to know it has happened to others.  I hope your bad days stay away.

I've been on a low dose of the Florinef for 3 years to keep my BP up and until this point it had worked well.  Today is my third day on half that dose and so far it hasn't dropped too much or gone high.  Fingers crossed!

Thanks Yogini.  Over the years of reading, I have always felt that hyperadrenergic POTS linked the most to my symptoms but never had testing for it since my BP has always been low.  I may have it checked after all.  I also won't be surprised if I'm given a medication for arrithymia at my next appointment.  While I always fight taking any drug (I'm only on the Florinef) I believe I will agree to this one if suggested.  Thought for sure I was going to have a stroke with all that heart craziness.   Our hearts might be a little "wacky" but thankfully they are strong!

Thank you again for taking the time to reply.  Be well.

[Pistol]

I have high and low BP and used to have terrible palpitations and tachy. Betablocker helped but Diltiazem and Betablocker together helped the best. Also SSRI helped. I am on loads of meds for my POTS but these helped best.  Hope you find the right med soon. I also know that Fiorinef can cause high BP.  

[Always hoping]

Thanks Pistol.  I can now tell my doctor that the high blood pressure isn't unusual!

Be well.