Anyone resolved blood pooling?

[ChookityPop]

This is my biggest problem. If I can fix this, I think that I would be in much better shape. I have Pectus Excavatum which can mimic POTS and I think I will have to do the NUSS procedure in the hopes it can better my symptoms. I use compression, drink fluid, salt and Mestinon. I also have kyphosis which my chiropractor tells me is severe though I dont think it looks severe..

I also most likely have MCAS which makes me want to try IVIG and potentially some kind of immunosupressive.

Im sorry if this is posted before...

 

[xebex]

My blood pooling is much better since very very slowly and I mean it’s taken 2 years, with a lot of set backs, to sort out my posture. I don’t really understand the mechanism of it but I do believe whatever strain on my spine there is, is causing Similar basal ganglia/brain stem issues to those with CCI. If you have kyphosis then I do think your posture could contribute but I’m not sure how much it can be corrected. Other things that cause blood pooling for me are histamine foods - low histamine diet is certainly helpful. Ritalin is also sporadically helpful as a vasoconstrictor and in the sense that it helps with dopamine which is an issue in pots/cfs/fm. Most people dont seem to be able to tolerate Ritalin, I can take it a couple of days a week if I take it more than two days ina row it seems to trigger vasodilation the opposite of what I need. I don’t think it’s long term solution but certainly has been helpful.

 

[Pyrrhus]

I use compression, drink fluid, salt and Mestinon.

It sounds like you are already familiar with the main symptomatic approaches to address blood pooling in the legs.

I would just add one more simple (and probably obvious) approach- keeping the legs elevated. I definitely notice it when I haven't been elevating my legs enough...

 

[PatJ]

A g-suit is a hardcore version of compression but works for the owner of this site. I've tried a couple and found that they helped but that when I took off the g-suit my BP would drop and make me feel so miserable for the next 12 hours or so that it wasn't worth the benefit.

 

[Celandine]

If you don't have high bp then a pharmceutical vasoconstrictor like midodrine could be a good option. Combine that with something like ivabradineto lower heart rate without lowering bp and you might feel a lot better. There are also herbal vasoconstrictors like butcher's broom or horse chestnut. My daughter takes ivabradine and a specific horse chestnut supplement (Swanson timed-release 22% aescin--others haven't worked like that one) and for her that has been a great combination. Of course, these things only treat the symptoms. We've also tried to reduce neuroinflammation using Normast PEA supplements (palmitoylethanolamide) and that has worked well in general.

 

[Celandine]

FYI--if you find the horse chestnut supplement on Amazon you'll see a lot of reviews from people with varicose veins who have had good success with it to help with their type of blood pooling. There's another supplement called Venalex that's supposed to be good for this. Again, used mainly by varicose vein sufferers. Contains diosmin and hesperidin. This wasn'tt successful for my daughter but I can't remember why! Headaches maybe? I have so many spare supplements here I wish I could send them to people who want to try!

 

[Pyrrhus]

I once reviewed all of my peripheral dysautonomic symptoms and found that they all involved beta-2 (β2) adrenergic receptors acted on by nerve endings that used norepinephrine.

So, instead of Mestinon, I tried Atomoxetine because Atomoxetine is a selective Norepinephrine booster. It was amazing. For a couple hours, all my blood pooling and exercise intolerance disappeared and I felt great.

Two days later, the crash came. And it was a big one.

I still keep the Atomoxetine on hand in case of emergencies, but the crashes mean I can't use it regularly.

A g-suit is a hardcore version of compression but works for the owner of this site. I've tried a couple and found that they helped but that when I took off the g-suit my BP would drop and make me feel so miserable for the next 12 hours or so that it wasn't worth the benefit.

When I was mild, I went Scuba diving. Afterwards, I felt so miserable for a day or so. This might have been the same effect as a G-suit...

 

[ChookityPop]

FYI--if you find the horse chestnut supplement on Amazon you'll see a lot of reviews from people with varicose veins who have had good success with it to help with their type of blood pooling. There's another supplement called Venalex that's supposed to be good for this. Again, used mainly by varicose vein sufferers. Contains diosmin and hesperidin. This wasn'tt successful for my daughter but I can't remember why! Headaches maybe? I have so many spare supplements here I wish I could send them to people who want to try!

thank you so much! I will look into all of this

 

[ChookityPop]

I once reviewed all of my peripheral dysautonomic symptoms and found that they all involved beta-2 (β2) adrenergic receptors acted on by nerve endings that used norepinephrine.

So, instead of Mestinon, I tried Atomoxetine because Atomoxetine is a selective Norepinephrine booster. It was amazing. For a couple hours, all my blood pooling and exercise intolerance disappeared and I felt great.

Two days later, the crash came. And it was a big one.




.

Wow. Thats super interesting. Im sorry you crashed afterwards. Have you tried IVIG?

 

[Pyrrhus]

Wow. Thats super interesting. Im sorry you crashed afterwards. Have you tried IVIG?

No, I didn't try IVIG because I didn't test positive for any anti-adrenergic antibodies.
Or any of the auto-antibodies my doctor tested for.

 

[Peyt]

FYI--if you find the horse chestnut supplement on Amazon you'll see a lot of reviews from people with varicose veins who have had good success with it to help with their type of blood pooling. There's another supplement called Venalex that's supposed to be good for this. Again, used mainly by varicose vein sufferers. Contains diosmin and hesperidin. This wasn'tt successful for my daughter but I can't remember why! Headaches maybe? I have so many spare supplements here I wish I could send them to people who want to try!

@Celandine , did your daughter ever suffer from sleep disturbance? If yes, any supplements that worked for her?

 

[Celandine]

@Peyt Yes, she had a big problem with sleep disturbance--unrefreshing sleep, insomnia, waking multiple times in the night, etc. For her there was no quick remedy for that. She had Perrin Technique osteopathy for a little over a year and her osteopath said that he's found that the sleep issues are the last to go when someone is improving. Like the rest of the body needs to regulate before the sleep will. Tried lots of herbal stuff with no result. I never wanted to get her on hardcore prescription sleep meds. The one over the counter med that would help in emergency situations (when she was in pain and couldn't sleep) was diphenhydramine. This tended to knock her out and also pull her symptoms back. It's an H1 antihistamine so maybe helped MCAS to some degree? Her POTS specialist put her on ranitidine(H2 antagonist) and this did nothing for her other than, oddly, make her super drowsy the next day. Not a usual side effect of that drug. Interestingly, the osteopath proved to be right. It was only after everything else started to improve that her sleep fell back into a more normal pattern. Now she goes to sleep at 10pm almost on the dot every night and sleeps through and is able to get up to get the bus to school at 7:30 every morning. A small miracle!

Side note on POTS and manual therapies---I just read this interesting piece over on Health Rising about Dr. Peter Rowe's presentation at the Dysautonomia International conference. He talks about ME and OI but there's also talk of how he works hand in hand with a physical therapist or osteopath and how he feels the manual therapy is really important for recovery. I know people don't take Perrin Technique seriously but it was very helpful for my daughter and so nice to see that validated by Rowe.
https://www.healthrising.org/blog/2...nomia-international-chronic-fatigue-syndrome/

 

[Peyt]

@Peyt Yes, she had a big problem with sleep disturbance--unrefreshing sleep, insomnia, waking multiple times in the night, etc. For her there was no quick remedy for that. She had Perrin Technique osteopathy for a little over a year and her osteopath said that he's found that the sleep issues are the last to go when someone is improving. Like the rest of the body needs to regulate before the sleep will. Tried lots of herbal stuff with no result. I never wanted to get her on hardcore prescription sleep meds. The one over the counter med that would help in emergency situations (when she was in pain and couldn't sleep) was diphenhydramine. This tended to knock her out and also pull her symptoms back. It's an H1 antihistamine so maybe helped MCAS to some degree? Her POTS specialist put her on ranitidine(H2 antagonist) and this did nothing for her other than, oddly, make her super drowsy the next day. Not a usual side effect of that drug. Interestingly, the osteopath proved to be right. It was only after everything else started to improve that her sleep fell back into a more normal pattern. Now she goes to sleep at 10pm almost on the dot every night and sleeps through and is able to get up to get the bus to school at 7:30 every morning. A small miracle!

Side note on POTS and manual therapies---I just read this interesting piece over on Health Rising about Dr. Peter Rowe's presentation at the Dysautonomia International conference. He talks about ME and OI but there's also talk of how he works hand in hand with a physical therapist or osteopath and how he feels the manual therapy is really important for recovery. I know people don't take Perrin Technique seriously but it was very helpful for my daughter and so nice to see that validated by Rowe.
https://www.healthrising.org/blog/2...nomia-international-chronic-fatigue-syndrome/

@Celandine thanks so much for your reply. I have never seen an Osteopath... I wonder where I can find one who knows about the Perrin Technique. Is the Perrin Technique similar to lymphatic massage?

 

[sometexan84]

Test for phospholipid antibodies.

Anti-cardiolipin antibodies were found in 95% of ME/CFS patients.

Test for beta-2 glycoprotein 1 antibodies as well, and probably phosphatidylserine antibodies, and lupus coagulant.

Anyone w/ ME/CFS that has blood pooling, and/or POTS, hypotension, numbness, vision issues, or cold feet should test for these.

Would also be good to check out Annexin V antibodies, and platelet antibodies.

 

[Celandine]

@Peyt Perrin has a book describing his process and research. It's detailed to the point that you could do some of it yourself or share with a physio or osteopath to see if they could do something similar. It is lymphatic drainage+ spinal alignment + cranial stuff with an aim to drain lymphatic fluid from the head/brain. I'd heard about osteopathy for ME and initially it made no sense to me until I read this piece at Health Rising and listened to the interview with Perrin linked in the piece. Some bells went off and made me think it was worth trying with my daughter especially since there happened to be a Perrin trained osteopath 10 minutes from where I live. I seemed like a "nothing to lose" kind of thing.
https://www.healthrising.org/blog/2...rin-point-ray-perrin-me-cfs-and-fibromyalgia/

I will say that for most people it isn't a "cure" and very likely helps much more if you're young and/or haven't been ill for decades. It's something to do in conjunction with other therapies (pharmaceutical, herbal, lifestyle, etc.)

Also, update on my daughter--she's now on midodrine and stopped the horse chestnut. She's had a bad flare over the past few months and her consultant thought it made sense to go to something more powerful. Flare was mainly due to hormonal issues, I think. She has serious POTS flares pre-menstrually and during periods and possibly endometriosis. She was put on the worst possible (cheapest) continuous birth control by her GP and was having breakthrough bleeding all the time. She's now on a higher quality birth control pill and on midodrine and she's back to what seems to be full wellness...for a while, anyway. It never seems to end, really.

 

[Celandine]

@sometexan84 I just spoke with my daughter's POTS consultant last week and actually asked about autoimmunity and getting more tests. He said he had patients who've had all kinds of research level antibody tests done. I'm guessing this will have been private and at great expense. He said that he hasn't found the results useful for treatment. He said he's found the treatments patients respond to can be completely counterintuitive given the test results. Interesting.

 

[Peyt]

@Peyt Perrin has a book describing his process and research. It's detailed to the point that you could do some of it yourself or share with a physio or osteopath to see if they could do something similar. It is lymphatic drainage+ spinal alignment + cranial stuff with an aim to drain lymphatic fluid from the head/brain. I'd heard about osteopathy for ME and initially it made no sense to me until I read this piece at Health Rising and listened to the interview with Perrin linked in the piece. Some bells went off and made me think it was worth trying with my daughter especially since there happened to be a Perrin trained osteopath 10 minutes from where I live. I seemed like a "nothing to lose" kind of thing.
https://www.healthrising.org/blog/2...rin-point-ray-perrin-me-cfs-and-fibromyalgia/

I will say that for most people it isn't a "cure" and very likely helps much more if you're young and/or haven't been ill for decades. It's something to do in conjunction with other therapies (pharmaceutical, herbal, lifestyle, etc.)

Also, update on my daughter--she's now on midodrine and stopped the horse chestnut. She's had a bad flare over the past few months and her consultant thought it made sense to go to something more powerful. Flare was mainly due to hormonal issues, I think. She has serious POTS flares pre-menstrually and during periods and possibly endometriosis. She was put on the worst possible (cheapest) continuous birth control by her GP and was having breakthrough bleeding all the time. She's now on a higher quality birth control pill and on midodrine and she's back to what seems to be full wellness...for a while, anyway. It never seems to end, really.

@Celandine Is there a web site where one can search based on their location and find a Perrin provider?

 

[barabara]

Does anyone else have both bulging feet veins and cold feet? I typically associate vasoconstriction with cold appendages.

Since my preteen years, a few years before the start of my ME/CFS, I noticed large hand and feet veins. My other veins were also large. I had several small varicoceles on an ultrasound. However, my feet are almost always cold, even if I'm warm.

 

[ChookityPop]

A g-suit is a hardcore version of compression but works for the owner of this site. I've tried a couple and found that they helped but that when I took off the g-suit my BP would drop and make me feel so miserable for the next 12 hours or so that it wasn't worth the benefit.

Do you know some other names for this kind of compression suits? Or other places to buy them? It would be really interesting to try some of these.

 

[barabara]

A g-suit is a hardcore version of compression but works for the owner of this site. I've tried a couple and found that they helped but that when I took off the g-suit my BP would drop and make me feel so miserable for the next 12 hours or so that it wasn't worth the benefit.

What if you lie down and don't get up during those 12 hours?