Wondering about others Standing Tolerance?

[MaineDoug]

As I lie flat trying to get my HR under 100 and my BP below eye watering levels, feeling like I’m risking my life in the minute it takes to get water or relieve myself, I wondered about the standing tolerance of others.

On good days I can stand for 5-10 minutes at a time and 30 minutes total standing per day. 
On bad days standing 0 minutes. Any standing leads to tachycardia (185) and either Hypertension (205/105) or isolated Systolic Hypertension (185/55).

I pay a price regardless in increased symptoms and unstable signs for hours to days.

HOW LONG CAN YOU STAND?

[MomtoGiuliana]

When I am in a flare up standing is very difficult and too much standing can quickly lead to a cascade of worsening symptoms.  I also get high bp on standing, and this is greatly exaggerated, as everything is, when in a flare up.

I have learned however when in a flare that trying to at least sit up, as much as possible during the day, is important also to avoid worsening of symptoms.  Lying down for too long only increases my OI.

IV fluids help a lot.  I can go in for fluids in a wheelchair and walk myself out several hours later.  The benefits can last for about 12 hours.  And at least during that time I think it greatly helps prevent a worsening of symptoms bc I can be upright and even moving around more than otherwise.

[MaineDoug]

56 minutes ago, MomtoGiuliana said:

When I am in a flare up standing is very difficult and too much standing can quickly lead to a cascade of worsening symptoms.  I also get high bp on standing, and this is greatly exaggerated, as everything is, when in a flare up.

I have learned however when in a flare that trying to at least sit up, as much as possible during the day, is important also to avoid worsening of symptoms.  Lying down for too long only increases my OI.

IV fluids help a lot.  I can go in for fluids in a wheelchair and walk myself out several hours later.  The benefits can last for about 12 hours.  And at least during that time I think it greatly helps prevent a worsening of symptoms bc I can be upright and even moving around more than otherwise.

Thanks MTG,

I did a round of IV saline and it helped. Unfortunately my veins are scarred from years of IV meds for my RA. 
How often do you get IV fluids? 
What signs/symptoms lead you to seek the IV?
Do you have a port and if so how has your experience been?
 

Doug

[MomtoGiuliana]

I have pretty distinct episodes of flare up.  They usually start with some mild symptom such as mild fatigue or I start noticing more rapid heart rate on standing.  Then within days I have the whole suite of standard POTS symptoms.  I try to get starting on IV fluids as soon as possible.  My dr is in agreement and is aggressive about it.  She wants me to get them 3x a week when my symptoms start to get bad.  I have not had a significant flare up knock on wood for over 3 years now!

[MikeO]

Can't say that i have to deal with OI per se as much as getting fatigued or leg discomfort from standing too long. My biggest problem is that i get transient swings in blood pressure and when i go low i end up waking on on the floor.

I can have bp's that range from 160's over 102's down to 74/50 while standing. my heart rate can be just as messed up especially with the low bp's. can go from tachycardia (115's - 130's or so. i am beta blocked) to never budging from 86 no matter what my bp's are.

i just had a sudden low when i was standing in line at the grocery store (felt it) so i sat down on the floor and pretended i was looking at a magazine on the lower rack.  

[Pistol]

On 9/7/2023 at 12:23 PM, MaineDoug said:

HOW LONG CAN YOU STAND?

@MaineDoug - it has been evaluated by a PT that I consistantly develop orthostatic and POTS symptoms after pretty much exactly 2 minutes of standing at a counter. Standing in line is pretty much impossible for me. When I stand somewhere talking to someone I immediately can tell when the moment comes and usually have to sit on my heels or find a chair. Walking is a bit better, but after about ten minutes of walking I become symptomatic and need to sit for a while. If not I will definitely have a flare for at least several days.