Blood Pooling

[jump]

Hi again, sorry for all the questions lately, I'm just trying to get organized before my various meetings with doctors....

So far, most of my tests show that I have tachycardia when standing but NOT a correlating drop in BP. Sometimes when standing my BP actually increases a good bit (normally it's around 110/60, standing it's sometimes 140 or 150 /80). Because I don't have hypotension, I've been assuming I also don't have low blood volume or blood pooling in my extremities.

However, when I read more about blood pooling I realize I have a LOT of the symptoms. If I stand my hands and feet get very hot and swollen, especially my feet and ankles. Standing gives me severe "coathanger" pain and headaches within a few minutes. If I continue to stand, I start feeling like I'm at a high altitude -- kind of disoriented and nauseated, and eventually I feel like I'm completely drunk. I'm assuming this is because my brain isn't getting enough oxygen because the blood isn't getting up to my head the way it should.

So my question is, can I have blood-pooling issues *without* having low blood pressure? I noticed on the Medical Mysteries segment about Linda Smith that she didn't have a drop in BP but she did have blood-pooling.

I take beta blockers and this helps a lot with the tachycardia and the "skipped beats" etc. -- and taking the BB also helps me feel comfortable standing longer (because my heart's not going quite so crazy). But, would the BB affect blood pooling, if I do indeed have blood pooling? Does it counter-act it at all, or does it just keep my heart from racing?

Also, from what I read, it sounds like *everyone* with POTS has blood pooling in their extremities when standing. Was I misinformed to assume that if my BP was high upon standing instead of low that I didn't have blood pooling problems?

Thanks in advance for any insight, you all are really nice to answer my questions...

jump

[flop]

Good question, I don't think that even the brilliant doctors know the actual answer though. My suspicions are that most of us do have blood pooling. Your BP doesn't have to drop on standing to have POTS (in fact some drs say that if it does drop that you don't have POTS, official line is that BP is not in the diagnostic criteria).

In healthy people when they stand up about 0.5 to 1 litre of blood goes down to their legs, the BP drops momentarily, then the leg veins contract to push the blood back up the body to normalise the BP. This happens automatically within a few seconds. This is why some healthy people sometimes get a little dizzy for a few seconds on standing up.

My doc explained that when I stand up my blood pools in my leg veins (I have Ehlers-Danlos syndrome which means my veins are extra stretchy so hold lots of blood down there!). My veins don't contract the way that they should. My body senses that not enough blood is coming in to the heart so not enough is being pumped up to my head. To get more litres per minute blood flow to the head the heart can either pump larger volumes of blood (not if it is pooled in my feet) or pump faster - this is what causes the tachycardia in POTS.

The tachy isn't the cause of the problem but the body's way of trying to get the correct amount of blood to the brain. If the tachy works to balance out the pooling then your BP won't drop (the tachy has compensated and has kept the BP normal). When the tachy isn't enough to compensate then the BP will start to drop and we may faint.

Some of us get something called "acrocyanosis" which is a blue/purple mottled discolouration of the legs when we stand, this is a sign that blood is pooling in the legs. (Do a search on google images - there are pics on the internet). Blood can pool in other places too, another common one is pooling in the splanchic veins (veins arround the stomach and guts) after eating. This is why lots of us get symptomatic after eating a large meal.

I hope that makes sense!

Flop

[flop]

I found a picture of acrocyanosis in an article about POTS here is the link.

Flop

[MelissaCrystal]

It says on the main Dinet site that not all POTS patients have a drop or a change in blood pressure upon standing. So no, not all people with POTS have BP issues.

[firewatcher]

jump,

I got large BP increases during my orthostatic challenge tests at Vandy, but usually mine gets narrow (systolic unchanged/diastolic hypertension.) I think it has to do with the blood volume status at the time and the shift of water in and out of cellular/intracellular space. I did not think that I had pooling, until I got my abdominal binder. I just figured that after all day and two large babies, I had a tummy pooch. I don't get the pooch if I wear the binder during the day, I also feel better and don't grey-out as often. The docs at Vandy know that there is an aldo-renin (kidney/adrenal hormones that regulate water and blood pressure) issue that is common in POTS and probably complicates, and possibly causes the pooling issues. Do all POTS patients pool? I don't know.

[Ernie]

Hi,

I know some people have POTS because they have too many heart receptors which causes the tachycardia and others also have POTS because their heart receptors are too sensitive.

[ramakentesh]

As a male i cant seem to see whether blood is pooling in my legs or not. I have impaired NET reuptake but i get super sizzy when standing or sitting for a long time despite the fact that my blood pressur ewill often be increased at this time. Go figure. The article some doctors in australia wrote suggested this might be from an overly excessive sympathetic nervous system response to standing causing excessive vasoconstriction rather than blood pooling in this type of POTS

[vemee]

Flop: How does your bp do with eds? I never considered that I might have it but your description of heavy pooling got me to thinking. At Cleveland Clinic I found out 44% of my blood drop out of circulation when standing, so I guess it goes to pooling. Jump's description of symptoms fits mine pretty close. However my bp does go up when standing and when tested at Vanderbilt my standing norepinephrine levels are above 2200 pg/ml which they say is not that common.

[mkoven]

At Cleveland they found I lose 20% of blood volume to pooling-- normal is 10%. they called that "moderate" pooling. When things are bad, my legs look sunburnt or my feet look purple.

[ramakentesh]

I spoke to my doctor about this and it seems that yes they believe that most or probably all POTS patients have some inappropriate blood pooling - even those with impaired NET implicated as a cause.

In Dr.J Stewart's classicifation of POTS he found that people with Low flow Pots had more blood pooling in the stomach area, but also a little more than usual in the pelvis and legs, normal flow POTS had blood pooling exclusively in the stomach area and in high flow POTS the pooling seemed to be greatest in the pelvis and more so in the legs resulting in significant pooling in the legs.

So Low Flow: more than double normal in stomach, a little more than normal in pelvis and legs

Normal Flow: much more than normal exclusively in stomach

High Flow: nearly double normal in pelvis and legs.

[carinara]

When i had an appointment with 2 very good POTS specialists in November. I had to go through a lot of testing!

My BP is always on the higher side. When i had to stand up after 3 hours and So they could perform some more tests on me, my BP raised and my HR almost doubled up. Like always i started to feel dizzy and lightheaded after about 1 minute. My BP stayed high but the blood pooling in my legs was there anyway. The doctors pointed at my legs and showed me. In fact thats the first time when i watched my legs and noticed how they changed their colour. My BP was high all the time (170/110). They explained to me, that when i stand up the blood dissapears into the lower body. Thats why i feel so dizzy and sick. The HR and BP are just tools trying to compensate for the blood dissapearing or pooling.

[hollie]

Jump,

I have the exact same issues as you... Higher BP on standing, but tachy. My dr put me on a BB - which helped the tachy problems but made me more "drunk feeling" when I stand. He continued the BB but also added Midodrine. He said that sometimes controllng the heart rate with BB will lower your BP also, even when it didn't before. We're still tryng to balance them to even it out.

Hope that helps.

[ramakentesh]

Exactly as i was saying - ultimately there is blood pooling in nearly all cases. BB helps with the sympathetic overactivity and tachycardia, but results in lower BP meaning more dizziness...

[mattsmum]

I'm very interested in blood pooling atm.

Flop I have the same dx as you. Hypermobile Eds with POTS to boot. I get extreme amounts of pooling to the point where my legs ache badly. I get my husband to rub my legs at night and after that the muscles seem to relax abit so I might be able to go to sleep.

Anyone else experience this? Just wondering.

Julia

[Radha]

yes my legs ache alot from so much heaviness and pooling, no med seems to help this pain, i have to keep my legs elevated at all times,

Radha

[firewatcher]

I KNOW they are expensive, but have any of you tried the leg pumps? They are inflatable "boots" that go over your feet and legs and then inflate and deflate, pumping the blood out and up to the heart (I had these in the hospital when my BP dropped so low, they were AWESOME!) I wonder if you could rent a pair from a medical supply and try them out?