ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 Safflower, Caulis species also work on NET.yes I am also like that - non existent veins, never visible, hard to find a vein for an injection. And occasionally when id have a beer id feel better and my hand veins would re-appear. Ive always wondered whether chronic vasoconstriction rather than vasodilationb plays a role Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 Safflower, Caulis species also work on NET.yes I am also like that - non existent veins, never visible, hard to find a vein for an injection. And occasionally when id have a beer id feel better and my hand veins would re-appear. Ive always wondered whether chronic vasoconstriction rather than vasodilationb plays a roleI do believe for me - It does. Might be a clue as to what treatments would work best. Not vasoconstricting things - not in limbs any way. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 Ever tried Gingko bipola?? Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 Ever tried Gingko bipola??Yeah, terrible - terrible headache. Vincopetine (periwinkle) supposed to do same and more - but, doesn't give the headache. I know someone who recently tried Ginko and it gave them the horrible headache too. I know many people take it and say it helps their memory. But, wasn't the one for me. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 Rama,What are we looking at? It definitely needs explanation. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 sorry its the molecular structure. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 22, 2012 Report Share Posted February 22, 2012 Go Issie! Wahooooooooo! Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 22, 2012 Report Share Posted February 22, 2012 Molecular structure? Nerd it up rama ; ) Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 Mestonin makes me unusually interested in molecular structures - for artistic purposes LOL Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 LOL - odd choice of art. But, if it makes you happy - draw away. I'll try to appreciate it - although, I don't understand it. LOL But, come to think of it, there's allot of art that is not understandable. I still appreciate it, anyways. Quote Link to comment Share on other sites More sharing options...
chipper Posted February 22, 2012 Report Share Posted February 22, 2012 Very happy for you!! All of your hard work has really paid off. Thank you for sharing the good news. Enjoy!! Quote Link to comment Share on other sites More sharing options...
anna Posted February 22, 2012 Report Share Posted February 22, 2012 I think I will start some experiments of my own now, I am glad you have found the right cocktail well done. Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 I think I will start some experiments of my own now, I am glad you have found the right cocktail well done.Anna,Let me know what you figure out. Since we both have EDS - would be interested to compare notes.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 Here's one article on the PQQ: There are others you can look at when you get into the Life Extension site.http://www.lef.org/m...ochondria01.htmHope I got this typed in right.Well, it didn't take you to the article - but, when you get there type in PQQ and it should pull up info on it. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted February 22, 2012 Report Share Posted February 22, 2012 Congratulations issie .. 80% is fantastic .. Keep us up on your progress if you have time aftergetting your life back .. Lol .. Tc .. D Quote Link to comment Share on other sites More sharing options...
issie Posted February 22, 2012 Author Report Share Posted February 22, 2012 Congratulations issie .. 80% is fantastic .. Keep us up on your progress if you have time aftergetting your life back .. Lol .. Tc .. DThanks, not intending on going any where. Still have the other 20% to figure out and still tweaking this formula. But, doing pretty well. Thank You! Always, want to learn more. Just found a band-aid that is seeming to work at the moment. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2012 Report Share Posted February 22, 2012 Its interesting how some of the constituents oppose one another - some are vasoconstrictors or venoconstrictors, whereas periwinkle extracts are vasodilatory. Perhaps the peripheral vasoconstriction is pushing the blood up and the perwinkle is improving its cerebral availability? I have no idea but maybe Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 22, 2012 Report Share Posted February 22, 2012 Very good news!! So happy you were able to have the energy to exercise, that is definitely the key for well being. I take Magnesium and B complex, but I'll make a note of the others. I've considered Co Q 10 actually...very happy for you Quote Link to comment Share on other sites More sharing options...
roxie Posted February 23, 2012 Report Share Posted February 23, 2012 I just got Dr Brad Tinkle's Hypermobility book and he has a short chapter about beneficial supplements. You may like the book if you havent read it yet! Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Author Report Share Posted February 23, 2012 I just got Dr Brad Tinkle's Hypermobility book and he has a short chapter about beneficial supplements.You may like the book if you havent read it yet!Hey,PM me what you found. Start a new conversation - our other one is way long. LOL Issie Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Author Report Share Posted February 23, 2012 Very good news!! So happy you were able to have the energy to exercise, that is definitely the key for well being. I take Magnesium and B complex, but I'll make a note of the others. I've considered Co Q 10 actually...very happy for you CQ10 was way to energizing for me. They had me doing it when they thought I had Parkinson's. It over stimulated my sympathetic system. (It is supposed to stop Parkinson's in it's tracks - but, it's really high doses.) I'm also finding the PQQ to be too energizing. I've cut it down to 1/3 a pill. I found a site where body builders were talking about the PQQ and they found a whole pill to be too much. They also didn't take it every day. If healthy body builders need less, than us sickies need far less. They found that it increased their exercise performance and endurance.Right this minute, I'm having really bad depression issues. I'm thinking one of the herbs is starting to backfire on me. I'm going to have to seperate the formulas out and figure out which one is causing the problem. I did discover with research that Gotu Kola could cause depression issues. Also, vincopetine can lower your noriepi levels too low (mine needs to be lower - because it's above 600 on standing) but, that can also cause depression issues. I just took the maximum amount of saffron which is supposed to be a natural form of an SSRI. So, maybe it will pull me out of this. For something to have worked so well for that length of time - my hopes were it would continue. But, right now - there are starting to be some question marks. Let's hope it's just a slump and things will turn around. I did have a mast cell reaction last night and had to take a whole lot of anti-histamines. So, some of it could be the lows from those meds. I could go on whinning today - but, it won't do me any good and none of you guys can fix it. So, will just stop talking here for today. Tomorrow is another day. Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 23, 2012 Report Share Posted February 23, 2012 I actually thought I might have a tendency for Parkinson's at one time. Sometimes I find that I am stuck in one position and can't move, and then I fall to the right or left. It's embarrassing more than anything else, but it is a concern of mine. I know my MRI doesn't show any Lewy bodies, so maybe it's just the dysautonomia. So sorry you are having a bad time with your mast cells...I will pray that your depression is lifted and maybe the saffron will help! Thinking about you, and understand that some days are just that way even when there is no explanation Sometimes it's just frustrating.... Quote Link to comment Share on other sites More sharing options...
issie Posted February 23, 2012 Author Report Share Posted February 23, 2012 I actually thought I might have a tendency for Parkinson's at one time. Sometimes I find that I am stuck in one position and can't move, and then I fall to the right or left. It's embarrassing more than anything else, but it is a concern of mine. I know my MRI doesn't show any Lewy bodies, so maybe it's just the dysautonomia.I don't think they can check for Lewy bodies with an MRI. My doc said it can only be found with an autopsy and I don't want to be in that state to see if there are issues with that. LOL (It can, however, look for lesions that would indicate MS.) I still have spells like what you just described. There are times when I can't pick my legs up- they are just frozen. I also have severe muscle weakness at times and can't get up out of a chair. My loving hubby has to pull me up. Then there are also times, when my legs won't pick up to get into a car - mainly when I've over done it with walking too much or being upright too long. With Lewy bodies there is also motor function issues - like with speech, movement etc. (I do at times have symptoms of this.) But, that can also be symptoms with MG. I think until things present, so conclusively - there is no way we will get the answer to these issues. I've had these issues for years and they vary in their presentations and intensities. So, who knows what's going on? NOT ME! Quote Link to comment Share on other sites More sharing options...
issie Posted February 24, 2012 Author Report Share Posted February 24, 2012 Well, I figured out today that Butcher's Broom isn't so good for those of us that have high NE (noriepi) levels - it increases those surges. I also found an old thread and Rama had mentioned this fact. (I'll try to bump that up.) Also, it's constriction action on my veins caused my toes to go totally purple and I got neuropathy in my hands and feet. It also caused some numbness in my face and contributed to the depression that occured today. So, I'm back to thinking that I'm already overly constricted. So, maybe us with HyperPOTS with high bp's and high NE's don't need this particular herb. (Just my thoughts after today's experience.)Issie Quote Link to comment Share on other sites More sharing options...
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