Does Compression Help In Low Flow Pots?

[summer]

I have been suspecting maybe my POTS might be the low flow type, although I'm not sure. I have noticed that compression stockings do not help much with my symptoms. I have to admit, though, I have not gone all the way to the waist high type. They are expensive and I don't want to put more money into something that won't help.

Is it possible that compression might not work for the low flow type of POTS - since everything is constricting anyway? Any thoughts or experience??

[potsgirl]

Hi Summer~

The only way to know if compression hose will really work for you is to try the waist-high kind. Your doctor can give you a prescription for these and your insurance will probably cover the cost. That said, after I got two pairs thru insurance, I tried them several times and they made no difference at all for me. I have low-flow pots, too.

Hope this helps!

Cheers,

Jana

[summer]

Hi Jana,

I guess you're right that I will just have to try them to find out. It's interesting to me that they did not really help you, and your POTS is low flow. Do you find you have any swelling in your legs?

Thanks,

Summer

[potsgirl]

I usually don't have any swelling in my legs, I'm an abdominal pooler. How about you?

[summer]

I usually don't have any swelling in my legs, I'm an abdominal pooler. How about you?

I don't think I have much swelling in my legs, although maybe a little. Maybe I am an abdomenal pooler. I'm still trying to sort it all out, I guess

[janiedelite]

I haven't been diagnosed with low-flow POTS, but Mayo said I have a hyperadrenergic response to pooling (I pool everywhere; legs, abdomen, arms, feet, hands). My legs don't swell much but my abdomen does. I have red, hot feet if I'm a bit warm, and pale or bluish purple, cold feet if I'm a bit cool. Mayo said my adrenaline gets pumping in response to the lack of blood flow to my brain, from the pooling. I've wondered if this was the same mechanism described in low-flow POTS. So Mayo said to address the pooling and then the adrenaline and vasoconstriction response should subside, which it has. I've even had itchy sores on my feet from the chronic vasoconstriction, which was biopsied as pernio/frostbite. The sores haven't reappeared since I started wearing either thigh-high or waist-high hose last November. (I'm also staying warmer too!). My BP goes up on standing, mild stress, even talking, accompanied by bad chest pain. I still get this but it is not as severe.

I can't really tell a difference once I put the hose on as far as my fatigue level. But my heartrate is about 10-15 beats less on standing. And when I take them off at night I feel like a deflating balloon as my blood settles in my lower half again. I only wear 20-30mmHg hose as the higher hose constrict too much. So, I guess hose help me more in the long-run too as far as lessening the duration and severity of my flares somewhat.

I pay out of pocket. My PCP and I are trying to get my insurance to pay but they only cover upper body compression due to venous stasis ulcers post-mastectomy. I've sent them my Mayo doc's notes and recommendations, PCP's script, etc, but no deal. So I pay about $115 for my Jobst waist-high hose (still wearing the pair from last November, runs and all), and $25 for my Allegro thigh highs (which I wear if my tummy's too sore). I'm still fighting the insurance, but I'll still buy my hose if I have to.

Just my experience, hope you find something that works for you!

[ramakentesh]

I haven't been diagnosed with low-flow POTS, but Mayo said I have a hyperadrenergic response to pooling (I pool everywhere; legs, abdomen, arms, feet, hands). My legs don't swell much but my abdomen does. I have red, hot feet if I'm a bit warm, and pale or bluish purple, cold feet if I'm a bit cool. Mayo said my adrenaline gets pumping in response to the lack of blood flow to my brain, from the pooling. I've wondered if this was the same mechanism described in low-flow POTS. So Mayo said to address the pooling and then the adrenaline and vasoconstriction response should subside, which it has. I've even had itchy sores on my feet from the chronic vasoconstriction, which was biopsied as pernio/frostbite. The sores haven't reappeared since I started wearing either thigh-high or waist-high hose last November. (I'm also staying warmer too!). My BP goes up on standing, mild stress, even talking, accompanied by bad chest pain. I still get this but it is not as severe.

The mechanism you are describing there sounds more like normal flow POTS and is pretty similar to my own situation.

Low Flow POTS is characterised by a constant state of vasoconstriction. This is caused by reduced nitric oxide bioavailability results in reduced blood flow prettymuch throughout the body - in particular the skin. The hyperadrenergic state is not specific to this or any type of POTS. Pooling in Low Flow POTS is not specific to a particular bodily location, but is apparent to some extent in the legs, pelvis, and abdomin. The good news with this is that its possibly an easier for of POTS to treat although so far its characterisation is limited to the research body that described it.

Low Flow POTS has a lot similar to congestive heart failure - both exhibit elevated angiotensin II levels which predispose to increased oxidisive stress. Check out Dr Stewart's website for detailed information on this type of POTS including recent work on the reason there is exercise intolerance in this type of POTS (although it is also apparent in Normal Flow POTS).

Normal Flow POTS on the other hand have pooling prettymuch exclusive to the stomach region. These guys have excessive vasoconstriction of their hands (raynauds to a degree) when standing because of the hyperadrenergic response to this blood pooling in their stomach. The hyper. constricts the hands and feet and increases heart rate, BP, etc to try and maintain blood flow to the heart and carotid arteries.

if you seem to always have vasoconstriction then you might wonder whether you have Low Flow POTS - if you notice that this symptom seems to occur only under orthostatic stress then you might want to look at Normal Flow POTS (stomach pooling only).

You can to some degree try to work out where you pool through visual observation or measurements of your calf, etc at the start and after standing but its a bit of guesswork using this method.

Anyway - my point... compression of the legs wont help if you dont have pooling there - infact if you have vasoconstriction there already then it wont do anything. It depends where you pool at the end of the day! (or even if you do)

[futurehope]

I haven't been diagnosed with low-flow POTS, but Mayo said I have a hyperadrenergic response to pooling (I pool everywhere; legs, abdomen, arms, feet, hands). My legs don't swell much but my abdomen does. I have red, hot feet if I'm a bit warm, and pale or bluish purple, cold feet if I'm a bit cool. Mayo said my adrenaline gets pumping in response to the lack of blood flow to my brain, from the pooling. I've wondered if this was the same mechanism described in low-flow POTS. So Mayo said to address the pooling and then the adrenaline and vasoconstriction response should subside, which it has. I've even had itchy sores on my feet from the chronic vasoconstriction, which was biopsied as pernio/frostbite. The sores haven't reappeared since I started wearing either thigh-high or waist-high hose last November. (I'm also staying warmer too!). My BP goes up on standing, mild stress, even talking, accompanied by bad chest pain. I still get this but it is not as severe.

The mechanism you are describing there sounds more like normal flow POTS and is pretty similar to my own situation.

Low Flow POTS is characterised by a constant state of vasoconstriction. This is caused by reduced nitric oxide bioavailability results in reduced blood flow prettymuch throughout the body - in particular the skin. The hyperadrenergic state is not specific to this or any type of POTS. Pooling in Low Flow POTS is not specific to a particular bodily location, but is apparent to some extent in the legs, pelvis, and abdomin. The good news with this is that its possibly an easier for of POTS to treat although so far its characterisation is limited to the research body that described it.

Low Flow POTS has a lot similar to congestive heart failure - both exhibit elevated angiotensin II levels which predispose to increased oxidisive stress. Check out Dr Stewart's website for detailed information on this type of POTS including recent work on the reason there is exercise intolerance in this type of POTS (although it is also apparent in Normal Flow POTS).

Normal Flow POTS on the other hand have pooling prettymuch exclusive to the stomach region. These guys have excessive vasoconstriction of their hands (raynauds to a degree) when standing because of the hyperadrenergic response to this blood pooling in their stomach. The hyper. constricts the hands and feet and increases heart rate, BP, etc to try and maintain blood flow to the heart and carotid arteries.

if you seem to always have vasoconstriction then you might wonder whether you have Low Flow POTS - if you notice that this symptom seems to occur only under orthostatic stress then you might want to look at Normal Flow POTS (stomach pooling only).

You can to some degree try to work out where you pool through visual observation or measurements of your calf, etc at the start and after standing but its a bit of guesswork using this method.

Anyway - my point... compression of the legs wont help if you dont have pooling there - infact if you have vasoconstriction there already then it wont do anything. It depends where you pool at the end of the day! (or even if you do)

Rama,

I appreciate the fact that you can wade through the research and then rewrite the findings so I can understand them. I am going to bring this writeup of low, normal, high flow POTS to my doctor and see what he thinks I am. Thanks for wading through the medical terminology and making it easier to understand.

With the info you have learned so far, have you found something to make yourself feel better on a consistant basis? All the characterization is useful to the extent that we can improve our situations.

Thanks again.

[firewatcher]

I am a stomach pooler, I look pregnant by the end of the day if I don't wear compression. I don't wear compression hose though, they tend to be made for people who pool low in the leg and get less compressive as they go up, so once they hit my gut they are useless. I've had a great deal of success with "shapewear" but it has to be firm or extra-firm compression. I get the thigh-shapers because I do pool in my thighs, but not my lower leg or ankles. Right now I am having decent success with a maidenform product sold through Wal-Mart called "Work-it." I wish it was actually firmer and I am looking for something more like bicyclist shorts or something like them. One of the problems is that if you are small (smaller than size 10 US), they WON'T come in your size. Apparently you don't need shaping at those sizes! I wish the surgical compression manufacturers would make these, the hose are sturdier and last longer.

[EarthMother]

I recall some 15 years ago ... Before they called it POTS ... a physical therapist at the hospital wrapped my legs in burn unit compression tube garments. I was AMAZED that I could stand and walk down the hall with these on.

Another half dozen or so years later during another bad crash ... this time POTS had a name and I had a different name for the same condition ... and I used high compression thigh highs. They worked well for me and I used them often at work.

However, by 2007 when I finally lost my job and was in another POTS tailspin ... the compression hose did nothing for me. I tried several brands, got the higher ones than I used to use ... and still no help for the POTS this time.

I have never had any noticeable leg pooling, though I also look pregnant by midmorning if I have been up and about. Ab compression has always caused me discomfort (Pain!), that's why I used the thigh high hose.

However, I do have a very wide velcro waist cinch ab device that I can easily adjust tension as often as needed, and I do tend to FEEL better when I am upright with it on. Without it, I tend to sit with my knees drawn into my chest.

Strange how the leg compression helped before ... but doesn't seem to help now. I don't know if the high, normal, low flow POTS may change in one individual over time.

Good luck finding something that helps you ... for now.

~EM

[toddm1960]

It's nice to see so many stomach poolers on here, I was worried I was one of the few. So what has worked well for normal flow? I've tried two different beta blockers, didn't do much but make me feel like I was wearing a lead suit. I just started Clonidene so we'll see how that goes.

[gwensvilla]

My daughter is mainly a stomach pooler, with discolouration in her legs/feet, but only small amount of swelling in the feet...which flow is she likely to be...?? Prof says because she has EDS 3 it is likely vasodilation of veins in her legs.. she has low bp. she reacts quickly/badly to heat/ cold..

she is on octreotide for her abdomen pooling and it has taken her from non functional bed bound passing out, to being able to walk around the home getting out and about with us in the car, she can do some walking out (restricted, but trying to get reconditioned and build her strength/stamina up from deconditioning whilst bed bound) we also supplement with her wheelchair... it has been ABSOLUTE turnaround in functionality..

she is on ivabradine for tachy... and fludrocortisone and fluids/ salt tablets...I guess for blood volume or fluid retention.

EDS in the UK is STRONGLY linked with POTS and I believe there is research going on into it... Gwen

[ramakentesh]

Some doctors think that because some of their POTS patients have EDS or hypermobility, that they all do. I certainly dont have any hypermobility.

[issie]

I'm glad this thread got re-posted. I have pooling in my legs, arms and stomach. I also have hyperPOTS with high noriepi and high bp's. I was told because of the high bp's not to use high compression - because it will cause your bp to go higher. But, I have noticed that I feel better with some compression on my legs and abdoman. I also have always thought that I was low-flow and from this discussion - that sort of confirms my thoughts.

I use thigh high compression hose and one of those neoprene sports wraps for my mid-section. I do have some down to the thigh and up to the bust compression type smoothers that I wear with dress clothes. This seems to be the best for me. I don't always wear compression though. If, I'm just around the house and going to have my legs up - I don't. Just if I'm going out or going to be more active - shopping or something. Otherwise, I just try to let my body try to adjust itself without the compression.

Issie

[janiedelite]

I have high BP on standing, raynaud's and other symptoms of vasoconstriction. My excess constriction is a result of the high norepi levels that I produce in response to orthostasis. But my underlying problem is actually blood pooling and the vasoconstriction is my body's way of compensating for the blood pooling. I wear 30-40mm thigh high hose (I'd use abdominal compression, but it is too uncomfortable). I also use lots of salt and fluids. When I'm overly hydrated and/or compressed, my upright BP's are lower.