I have yet to find anybody looking for foods, herbs, supplements, etc to control this problem. Perhaps the people who used natural cures are no longer suffering and therefore don't subscribe to sites like this. If you have something that helps even if not a cure...please share it here.

my friend is a naturalist & confirmed the horse chestnut is for vein health. What form of this herb & how much fdo you take ?

I bought a cheap brand but it seems to help. Need to take it regularly for more time before I make a final evaluation. I bought 21st Centruy herbal extract horse Chestnut seed extract. It was about $5. I take two caps which is 600mg. I also take 2 caps each of Food-Zyme, Calcium d-glucarate, and DIM (diindolymethane). I take the last two because they are supposed to be good for autoimmune diseases and cancer. The last two are phytonutrients. I try to take this amount each morning and evening but forget from time to time. I plan to start taking Food Grade Diatomaceous Earth (must be food grade because swimming pool stuff is poisonous). Not only does it clean out the colon but also sweeps the arteries and veins. The best information is from "Wolf Creek":http://wolfcreekranch1.tripod.com/defaq.html Today, Nov 5, 2011, I have have real feet with no swelling. When I pinch about two inches above the wrist, I still have edema but greatly improved. I should warn you that when the swelling started going down, I spent the night and next day "to and from" the bathroom. In doing more internet research, it appears that swimming (and no other exercise) helps reduce the swelling. Not having access to a pool, I cannot try it. But it would be nice to hear from somebody else who tried it.

I certainly find aqua jogging helps my swelling. I am taking Healtheries Magnesium Chelated 750 mg's a day which helps calm my legs, muscular aches, pains and cramping. I am feeling like a new person ( almost as good as my old self) with the help of new pain relief due to nerve damage sorry not totally natural. Ruth :-D CHCH NZ

hey molan, I think it is totally natural. Did the water exercise or magnesium lesson the edema? I am looking at foods that decrease "edema":http://droggio.hubpages.com/hub/Natural-Diuretics I also want to try food grade diatomaceous earth because it has lots of "silica":http://www.diatomitecanada.com/the-silica-connection-diatomaceous-earth.htm which is a diuretic. Regular walking is not good as it makes me swell more.

Hi SLCS Group! Keep hope! Here is an other way ! I think I will be the longest SLCS survival (22 years) after having had all by you the described symptoms and an over 15 years long quest for a diagnosis which was confirmed in the begin of 1989 after several emergency hospitalizations in collapses and very bad vital prognosis where luckily one emergency MD recognized the signs of this disease (first named "Clarkson's disease") after having remove this very similar of angioedema. At this time just a few cases were related (all deceased so far I am informed) and a lot of medicine was experimented unsuccessfully and without benefit for me. In June 1989, a renowned acupuncturist (MD and surgeon) initiate a long term treatment of me and thank his help I am always alive at time and without any new crises and all the bad effects are alleviate so I am coming back to a nearly normal way of life, without other medication or drugs. But the disease is always present and requires being careful to prevent any relapse. It was a long way and a very close collaboration between this acupuncturist and me. And at time 5 or 6 other persons with SLCS in Brazil and USA are alive and in good conditions thank this therapy. Back to "Angioedema" here in France the diagnosis of this disease is when "deficit in inhibitive C1" is present and it is mostly hereditary and then treated by "Danatrol" until C1 coming back to the normal figures. (cf. L'AVANCEE MEDICALE - 25 Juin 1990 - n° 296). At the first stage, prescription of extract of Ginkgo biloba (GINKOGINK) at high dose (6 per day) was done but with a very short transitory benefit for me (about 3 months). For more details have a look on my profile or email: MAG.H@wanadoo.fr. Best wishes to all, Maggy

Yes to the Aqua jogging and magnesium... The problem being with me is I continue to do too much other physical stuff like gardening , etc., and by the end of the day I do at times suffer with edema of the lower legs. You can read Ruth Nolan's Path on a much earlier post discussion forum to understand fully the amount of surgeries I have had , etc. I am very much of the thought I should make the most of every day as every day is a huge gift which we should enjoy to the fullest. I also am not convinced that IVIG is the answer for me at this time however I respect others and their choices. I am also mindful that although I have three acute attacks and do suffer small bouts of swelling and a feeling that they may well be small attacks of SCLS I know from this site that there are people much worse off than me. Thanks Maggie for sharing your info you certainly have given me some food for thought Ruth Nolan CH CH NZ

I can vouch for swimming too. It helps me and is the only exercise I can do without much swelling. I need to swim in very cold water though. I will retry the magnesium ( thanks guys) as it also helps with cramps which for me are so severe and prolonged, that I black out/and/ or vomit. They last for hours and are usually during hot weather and some exercise and are in the big muscles. This has all happened since I have had the leaking- about 10 plus years. Low magnesium can be a source of cramp. Ruth, why do you not think IVIG is for you? Can you enlarge on that statement? Maggie I am glad your chipped in here! My problem is finding an acupuncturist that is able to do this

Maybe because I am not bad enough? I just don't feel it is appropriate for me just yet. While I have had 3 acute attacks ( my first being by far the worst in which all of my damage was done) the medical staff here have successfully helped me through my other 2 attacks without any major damage in a controlled way. I am lucky enough to have a good quality of life managing most things I need or want to do. Something Dr Greipp said to me when we were lucky enough to meet was 80% is about getting your head around this condition and that is my mantra for living with SCLS. I hope this helps. Ruth :-)

Thanks Ruth:)

well...we listed some natural cures about this condition. I wonder if anybody has tried a Beck machine or an infra red sauna?

I used a personal infra-red sauna daily for two years tying to manage the swelling in a more natural way... but it took two or three hours a day in it to accomplish what a diuretic would do. I finally gave up and went back to the diuretics and amphetamines. My swelling is chronic. I have never had an acute attack like so many with SCLS. I was told by the Mayo Clinic many years ago that my swelling was due to leaking capillaries, but the doctor I saw just called it idiopathic edema. I've tried many many natural remedies to control the swelling and you can read my profile to learn more about what I found to work best for me...

Swimming does help my swelling, and I am not able to do any other exercises without making the swelling worse... I hate cold water, so I swim in a heated pool, and it still helps! However, I have found the hot tub makes the swelling worse.

I read your profile. I have had a few more acute incidences, otherwise my history reads very much like yours. Tranexamic acid (Cyclokapron) helps me for a short time then ceases to work and does not have any adverse side effects. I always start taking it a few days before planning to fly. Also I am a professional musician and when I play, I swell hugely ( the emotion and concentration I guess), so before a concert or rehearsal, I take a Cardinol 40 tablet and it certainly helps. I cannot swim in warm or even lukewarm water- it must be freezing to help. Brrrrr.I also have a cool or cold shower- a bath or hot shower cause me to swell. All these things help but only to a slight degree. I am going to try the horse chestnut this week and give it a try. Sarah

http://www.26blue.com/index.php?title=Capillary_Leak

I was not able to access this link. What is it in relation to?

26blue.com is a website in progress. It still has some blank pages. They are collecting information on health conditions including capillary leak. if the link does not work, then go to www.26blue.com and ENTER the site. Look for capillary leak or just do a search. Rareshare is nice for people to talk and connect. The 26blue.com site is a wiki that is trying to list the most commonly used foods herbs and supplements that people say actually work for different conditions. So if somebody here has something that works (other than a prescription), that site would like you to tell the world so others can read what worked for you. 26blue.com does not sell anything. It is only supposed to be a collection of foods that people use to improve medical conditions.

Did not take my supplements for three days. Starting swelling today. Back on the supplements.

That is interesting. I am having trouble finding cost effective Horse chestnut seed here. The local health shop was charging $48.00 for 60 tablets and they were only 250mg!! I have found better strength (2000mg) and a more reasonable cost online, but it is still $24.00 for 50 tabs. Where did you obtain yours for $5.00 from? Also does it help all your swelling or just your leg/foot swelling? I have read some of the literature on the clinical trials and it does look promising.

I bought a cheap brand but it seems to help. Puritan brand is about $6. http://www.puritan.com/ iherb.com has the NOW brand for $9 and 21st Century Health Care, Horse Chestnut Seed Extract, Standardized, 60 Veggie Caps for $6. I am using the 21st brand. 4 per day would be $12 a month. I hope that helps. Perhaps the ones you are looking at are a higher dose or more capsules or whatever else. 26Blue.com is compiling food and supplements for capillary leak. I like the site because it lets me know what others are doing or not doing. The first page is all that legal junk like "_this is only academic_," etc. Click on ENTER and look for capillary leak. Some of their topic pages are blank because it is still being built up. I like the site because it does not sell anything. In addition to horsechestnut, I think you should also try food grade diatomaceous earth. (Swimming pool DE is poisonous because it is different.) Food grade DE is dirt cheap. It is a whole body supplement. I don't know anything that it does not cure, including cancer. I have a couple of links to that on a previous post on this thread. DE has been used by people and animals for generations. There are no side effects. Your body needs silica to function properly. Go back above and read the links. I also put a link for diuretic foods. Eat more of those foods. Several people on this board said that magnesium works for them. You can tub soak in a high concentration of edsom salts to help pull fluids out. If you are close to the ocean, you could go swimming every day. The salt water would pull out water. If you have the money or a very nice relative, compression massage helps tremendously. If you are really bad, they need to start easy. Lymph drainage massage also is good. Interesting you should mention getting sick when you fly because I used to fly and would get so very sick. I had no idea why I got so sick. From your profile....yes I had a severe case of pneumonia years ago.

Thanks for all that further information. I had no idea why I got sick on flights ( blacking out, vomiting etc) but others here have that same problem . I spent a lot of money having a custom compression garment made a few years ago and even though it is uncomfortably tight, the leak is stronger and it does not help at all really. It was down to my mid calves and elbows with masses of hooks and eyes down the front and very strong but my body was stronger.! So I would not recommend that.