Hyper pots real bad at moment

[merkat30]

Anyone else suffer hyper side of pots and also have low blood pressure aswell doctors wanting try high bp tablet but last one ended me up in hospital so worried 

[Pistol]

Dear @merkat30 - I have HPOTS as well as NCS, and I suffer from BOTH high and low BP's. Does your BP increase when standing? That usually happens with HPOTS. With me it depends on which part of the ANS is dominant - sympathetic = high BP, parasympathetic = low BP.  I am on high doses of beta blocker and calcium channel blocker to combat high BP but cannot tolerate decreasing it when BP is low. When you say your docs want to try a high BP tablet - do you mean a tablet to make your BP lower or a tablet to make it higher??? Is your BP low when you have HyperPOTS symptoms? 

[merkat30]

My cardiologist is going to try me on Clonidine for my hyper pots but I am worried about taking it with the low blood pressure I have also with mcas to today has been horrid when I  am standing it goes real high my bp but sitting it stays low walking around the house say I wanted to go to the  toilet or make a drink it will go real high so  does my heartrate. I worry because the last blood pressure tablet I tryed ended me up in the hostpital with to lows of bloodpressure.if I am honest I  am scared I allready deal with so much on daily basis my life is very limited I dont leave house unless for hostpital even not that now here in uk my appointment are on phone because of covid ....this trial of ketofin for mast cell i have been on for 12 days definitely made my hyper pots worse I been suffering this for 8 years now .the attached picture is walking to get some water but laying I can have 80/54 in mast cell flare so so difficult to treat .

[Pistol]

Dear @merkat30 - I question the accuracy of the BP equipment that took the reading you posted. I do not think that you would be capable of actually having a diastolic BP that high. No doubt you were hypertensive but these digital BP readers are notorious for taking inaccurate readings when your BP is either too high or too low.  I found that to be very much the case for me, I only use a manual cuff since several digital ones were consistently incorrect when I rechecked readings manually. If possible I would get a different, more accurate machine, or get a manual one. Most Retail pharmacies can teach you how to use one correctly. 

I too have both high and low BPs and could not at all tolerate Clonidine, but we are all different. Be careful!!!

[RecipeForDisaster]

11 hours ago, Pistol said:

Dear @merkat30 - I question the accuracy of the BP equipment that took the reading you posted. I do not think that you would be capable of actually having a diastolic BP that high. No doubt you were hypertensive but these digital BP readers are notorious for taking inaccurate readings when your BP is either too high or too low.  I found that to be very much the case for me, I only use a manual cuff since several digital ones were consistently incorrect when I rechecked readings manually. If possible I would get a different, more accurate machine, or get a manual one. Most Retail pharmacies can teach you how to use one correctly. 

I too have both high and low BPs and could not at all tolerate Clonidine, but we are all different. Be careful!!!

Me, too, exactly. I bought a quality BP cuff and it never accurately measured my BP which is low. I would do one arm manually or have my RN husband do it, and use the automated cuff on the other arm. My BP doesn’t vary that much between arms, and I'd get something like 74/56 manually, and 118/70 with the automated cuff. I have the same experience in medical settings. "Oh look, your BP is great!" when I was talking when they took it, and just came in from traffic and aggravation, AND they use a machine. I think they are good - I used them as an EMT - but not meant for those low (or high?) readings. 
 

The problem is that they always want to set me up with a 24 hour monitor - that would make me look like a liar since the readings would be inaccurately high. I have charted hourly BPs for more than 24 hours.

[merkat30]

I thought same I gone though 5 bp machines then when I went into a&e with a attack they keep saying ooh cant be that high with hostpital machine then they go get other machine twice the did it still high !! Then I lay down it goes real low took good two year for hostpital to believe me cause i was sat when bp was taking now they do it after making me walk around the room then I got put in resus bit then went down to low bp then after 3 days I was aloud go home as couldnt fix it said because was going low laying was safe go home. it terrorifing that no one believes even if one small amount time it nock u for rest of day 

[merkat30]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3860797/

[merkat30]

Only thing I have found on high bp on standing is this . 

[merkat30]

Mine goes real low laying so this doesnt applies to the likes me but  thought was helpful read in general for anyone just something I come across 

[Viktor]

Hi. I have hyper pots. So I am very rare have low blood pressure. But I take 2,5 mg of bisoprolol every day, and I don't even measure my blood pressure for 2 monthes now. So bisoprolol helped me with one symptom. But only with one, unfortunately, but this one was the main one.