Blood Pooling But Feet Always Cold?

[bizbiz]

Hi,

My doctor told me that I have blood pooling in my legs and abdomen, since my MSNA showed no increse when tilted. But I have always thought that people who have blood pooling can actually see it - red or purple feet / legs, or blotchy, or warm with swelling etc. But I dont have this - my feet are ALWAYS cold! Doesnt this sound like the opposite?

Thanks.

[ramakentesh]

You could still have pooling and increased epinephrine release is resulting in cutaneous (skin) vasoconstriction? My feet are always cold as are my hands - presumed from excessive vasoconstriction and vasospam.

Did you ask your doctor about this? Pooling in POTS (although you said this wasnt your diagnosis) usually results in reduced vascular resistance in the hands and feet, hot and red hands and feet. (increased blood flow to the skin, not reduced).

You may find that Dihdryoergotamine makes this symptom worse.

[Broken_Shell]

Hi Bizbiz,

I wonder the same thing. My hands and feets are always cold and purple and blotchy. If I shower though or go into a warm room, then they usually turn bright red. From the symptoms I have, I feel like I must have blood pooling because I always feel like there is not enough blood going to my head when I sit or stand up or eat. However, I think that it might not be so much of a traditional "blood pooling" as an inappropriate distribution and shunting of blood with respect to position and activity. I wish we could find more definitive answers about what goes on in our bodies. Then we might at least have a better idea of how to help ourselves function better. I am doing some trials with midodrine now, but it makes me hestitate some because this medication causes peripheral vasoconstriction, and my toes literally look like grapes without any medication.

~ Broken_Shell

[bizbiz]

Thanks guys.

rama - I know my dihydergot dose is low but it is actually making me feel worse. I emailed him today to give him an update and he replied that I should come in next week to see him so that we can go over things and discuss next steps with treatments. So I'm getting a list of questions ready for him...

Broken Shell - I have to agree in that I was wondering if my pooling was not of the 'tradional type', since I dont get the typical symptoms. I've suffered from cold feet and hands for as long as I can remember - its not something that just happened since I got sick, and I have always suspected that I have some sort of circulation disorder (which I guess OI is), because I always felt cold and always felt tired...I actually started to accept that I was just a lazy person!

[jjb]

I cannot say for sure in general, but do know when I pool, my feet and hands are often cold UNLESS I am pooling when I am outside on a hot day .... during those times my feet are very hot.

During pooling, I am also more senstive to air conditioning while pooling and sometimes the cold becomes painful ... though I do have mild raynauds.

Hi,

My doctor told me that I have blood pooling in my legs and abdomen, since my MSNA showed no increse when tilted. But I have always thought that people who have blood pooling can actually see it - red or purple feet / legs, or blotchy, or warm with swelling etc. But I dont have this - my feet are ALWAYS cold! Doesnt this sound like the opposite?

Thanks.

[bizbiz]

Hmmm...okay I think I'll just wait till I see my specialist next week and ask him then. I never knew you could have blood pooling AND have cold feet...but then again, I'm just learning about all this so there's a lot that I dont know!

[ramakentesh]

However, I think that it might not be so much of a traditional "blood pooling" as an inappropriate distribution and shunting of blood with respect to position and activity

I think Dr Stewart's website and published work explained this exactly as you described - its not so much venous pooling, but circulatory abnormalities and abnormal reflex dilation/constriction to orthostatic stress.

Raynauds is a vasospasm - a severe form of vasoconstriction of the periphery - its kinda the opposite of what happens in pooling in POTS - where there is decreased peripheral resistance, excessive blood flow and often increased filtration. Feet and hands are usually warm to the touch.

I didnt want to tell you before hand Bizbiz but Dihydro wasnt a winner for me either - it made me also feel worse. Let me know what other treatment options are offered to you if that is ok.

[janiedelite]

I have signficant pooling and my arms and legs turn colors whenever they are lowered below heart level. However, I just posted in jjb's topic about hot and cold feet and hands. I have both. I even have problems with chronic frostbite and chilblains which I never had pre-POTS. Mayo found I have a high norepinephrine level with any orthostatic stress, like Rama suggested. The neuro there said that the norepinephrine is excessively produced in my case BECAUSE I pool, as kind of a counter-measure to try to vasoconstrict and get blood back up to our dizzy brains. Makes sense to me, because I know when I'm on meds that increase my blood volume and increase circulation to my brain and heart, that my adrenaline symptoms (such as cold hands and feet) are significantly reduced.

Does your BP go up with standing? Mine does which Mayo says is just another sign of excessive adrenaline being produced in response to orthostatic stress. I find that any stress will exacerbate my adrenaline symptoms, though. My diastolic BP (bottom number) is what goes up the most when I stand or sit. Wearing compression hose has completely eliminated my chilblains because they push blood back up to my core and reduce the amount of norepinephrine needed.

[ramakentesh]

The neuro there said that the norepinephrine is excessively produced in my case BECAUSE I pool, as kind of a counter-measure to try to vasoconstrict and get blood back up to our dizzy brains

And the million dollar question is whether you do this as a normal reflex to an abnormal amount of pooling (in some cases) or your reflex is an overzealous reponse to normal pooling (hyperadrenergic).

There is so much research coming out in the next year or so - its gonna confuse things even more from what Ive read but it will also be very interesting.