Please help - bad flare but bp/hr not showing it

[Rainmist12]

I have managed POTS for 3 years, this last week have had the flare from hell and it won't quit. When things are bad my hr tends to go low and I get symptomatic below about 71. It's been as low as 55 and at night has been swinging in rushes between 55-110 (very low for me, 120- 150 would be more normal!) and lots of severe nausea, blurry vision, headache, dizziness. I can see all this swinging around at night (and bp actually for me pretty high while it's happening) but when I got to hospital this afternoon my heart rate was 78-85 and bp was 120/80- 150/100

They said I was fine. Put an IV since I asked and it helped so much on Monday when I went in feeling terrible, shot anti nausea meds through it, I fainted on the table right in front of them about 10 seconds later and couldn't talk for a few minutes. The IV started to take effect, an hour later I could see straight and walk out under my own steam. However as far as the hospital are concerned, my bp/hr were the same before they started as when they finished, I was stable all the time, my cardio was there and did a quick exam, EVERYONE said you're fine. Nothing wrong. You don't need fluids. My mother was told if I faint at home and I'm unconscious to put me in the recovery position but not bring me back in, I don't need help and there's nothing they can do.

The fluids HELP so much, I felt so ill that I sought emergency care twice this week for the first time in 3 years since diagnosis. But it isn't showing on the monitors! No one is EVER there with a screen on when my hr is going insane. Is there any reason it isn't showing? Is there anything I can do? I can't handle this alone any more.

[Rainmist12]

Thank you, such a relief to talk to someone.

My cardio was in the A&E and did an exam. Also said I was fine, nothing wrong although I felt terrible and had fainted. He knows very little about POTS and says so :( Unfortunately it's hard to get referred on.

I take 0.3 florinef and 10mg propranolol x 2 a day plus salt loading. I control it well most of the time, and I think my body is too good at compensating. There was obviously nothing like enough blood in my head - I passed out - but enough in my body that the bp monitor and heart rates were ok. I know from knowing my figures that my hrs were actually unusually low  but what's low for me is normal range. And the medics don't believe anything but their monitors.

The fluids really, really help but I the impression I got today was that they won't let me have them again as the improvement wasn't 'testable' and I couldn't demonstrate tachycardia or low bp on the screen.

Thank you Christy. I've never gone to the ER before ever for this, but I felt so ill and the figures on the monitor were so low I was concerned, I feel like I've lost control and what I know to do isn't working, and my GP SENT me there. I will be telling him on Monday I got the bum's rush straight out again.

[CHRISTYDRAKE]

Do you have a doctor that is treating you for your POTS?  Neurologist, Cardiologist, GP, etc?  If not, that would be the first thing I would do is to find a doctor to treat you.

Are you on any medications?  My son takes a beta blocker to keep his bp/hr level.  We have noticed that his vitals aren't always tied to his symptoms.  He can feel his worst and his bp/hr are fine or he could feel pretty good and his bp/hr are terribly high or low.

IV fluids can be prescribed if they are helpful to you.  My son was prescribed IV Saline for a five day treatment and it was done at home.  A nurse came on a Monday and got it all started and showed me how to disconnect the bag and how to start a bag.  He did one bag a day for five days.

My son takes a couple of other medications that are also helpful.   The main thing is to find a doctor to help.  We no longer go to the ER for any POTS symptoms since they are unable to help.

Christy