Supplements To Improve And Strengthen Capillary Walls? POTS, IIH, Dysautonomia

Momentum

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Hi everyone,
First question post. In my intro I give a detailed background, but not recent info. Was dx'd with Fibro, CFS, MCS, MS and then Lyme with co's a decade ago. Have had ups and downs treating. Lately I came across information regarding vascular EDS, MCAS and IIH and how they are often co-morbidities - giving the same symptoms as mine. And it made so much sense! (This doctor made a connection also with the vagus nerve and IIH) Maybe there is a vascular component (possibly hereditary) as to why some of us are getting so sick and are so sensitive and others are not.
Anyway, I have been suffering immensely lately from a horrible headache. (I've had some type of headache probably 85% of my life, but this one is relentless.) I absolutely believe it is due to IIH. Usually the answer to this is to take Diamox. I tried it and it made me very sick.

I believe the better answer is to improve vein health. About 10 years ago I was taking a lot of MSM and after about 15 months my veins went from being a phlebotomists nightmare, to amazing! That being said, it took some time. I am wondering what other additional supplements could be taken to improve vein health? Just about ready to order some Magnoil, but maybe there are a few others I should add in.?? Thanks!
 

observer1961

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My wife used to bruise super easily with ordinary daily activities. She started taking grape seed extract and within a few weeks the problem went away. She has taken it for years now and it continues to work. We use an inexpensive NOW brand, 250 mg capsules once per day.
 
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My wife used to bruise super easily with ordinary daily activities. She started taking grape seed extract and within a few weeks the problem went away. She has taken it for years now and it continues to work. We use an inexpensive NOW brand, 250 mg capsules once per day.
Thanks observer1961
I just found this, so it makes sense,
"How Grape Seed Extract works
In a number of studies, antioxidants known as oligomeric proanthocyanidin complexes (OPCs) found in grape seed extract have been shown to reduce the symptoms associated with varicose veins and chronic venous insufficiency such as pain and swelling."

I find all of this fascinating because I've always wondered why the veins in my arms are minuscule, but the veins in my feet just keep getting larger. Out of all the times I've had blood work, or the dozens of IVs no one has said anything that these are clues.
 
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Momentum

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@debor, I almost didn't click on this link (and now I sit here, overwhelmed and in tears). Over a decade ago I made a friend. We met at a fairly famous "alternative" clinic getting IV therapy. At that time, both of us had spent several years with mainstream docs and been told "your labs are normal". My symptoms became so severe I was diagosed with MS w/o demylinatin (yet). Then we were onto alternative docs and told "heavy metals" "food allergies" "candida", went through all those protocols. CFS/ME/Fibro/Mult Chem Sensitivity, etc. At the time we both had POTS (but referred to adrenal fatigue) and MCAS (referred to as MCS). Later we were diagnosed with Lyme and co-infections. Which is what I chose address and at one point got very well.
The last few years she has focused on mold sickness, joined "Mold Avoiders" and went to death valley and varying other places to avoid mold, which frankly I think is crazy long term. I absolutely believe mold does make people sick, I just don't believe avoiding it is the answer. Let me clarify - I don't think a person should live or work in a place with a bunch of mold. But I want to solve the root problem, and I want to live in society. I almost didn't click because "mold" was in the title.
Anyway, I have suffered varying headaches since puberty (and cervical/cranial issues since 19). And have had one probably 75-80% of my life. It was only this fall, with an unrelenting extremely disabling headache that I began to hit the research again, and a dramatic increase in MCA issues (what I've been trying to do, the last 5 years, is get back to my Lyme protocol that at one point got me well). My research led me to Dr Diane Driscoll - who had my similar issues and many the same as the Jennifer in the link. POTS, MCAD, IIH (intracranial hypertension vs Jennifer's CCI causes dramatic changes in cranial pressure) and EDS. I had never heard of EDS until a few months ago, but boy oh boy am I a classic, and the IIH too.
But reading Jennifer's story and how just lifting her skull brought instant relief - well, that is the case for me!!!
Doesn't it make sense? If you have EDS then tissue atrophy is bound to happen, the skull is not supported, the weight goes down - oxygen issues, blood flow issues, vagus nerve issues.... OMG.

Jennifer's choice with the bolt surgery is terrifying, but I don't judge her for it. For me, I will continue to try and address my EDS more naturally. Years ago, I took high quality MSM for several years. It dramatically improved my vascular health (as well as receptor health). I went from having a picc line, my veins were so bad, to be a completely easy blood draw. When I stopped the MSM, it took about a year and my veins went back to crap. I think there is more to do to address this, and I believe I have done a lot of calcification from mega dosing D without K2.

I seriously thought about taking out a loan to go see Dr Driscoll. (But years ago, and after spending our savings/ retirement and much more, and none of those clinics whether mainstream or alternative brought any real help, I decided I'd never get suckered again.) But Driscoll was tempting, she understands the symptoms and diagnosing. Except her answer to treating the tri-fecta (POTS, MCAS and IIH) is histamine blockers and diamox. Those are only bandaids. And I tried the diamox (hoping for just some temporary relief) and I could not tolerate it. (She does have an amazing patented supplement that is a great natural help for MCAS, but I've found lowering my oxalates is dramatically improving that problem.

All this to say, THANK YOU!!!! This is a huge piece of the puzzle for me. I knew the EDS was serious, but not to this extreme. I work on strengthening my neck, intermittently - because I get little improvement. And I've always noted that if I hold my head high and back I get relief and blood flow - I just can't maintain it. (Lately, doctors dismiss this even more because of "head forward posture" due to "screen/tablet/phone time". While this is certainly concerning for many, my issue started decades before a screen was in anyone's hand. Recently, I had a PT tell me that my pain wasn't "that severe" that "your brain is interpretting your pain as a lion when it's a mouse." F- him!

I will continue to pursue everything I can to "reverse" or correct EDS and gain the strength I need to support my head. I'm also going after Lyme and correcting my supplements. Many, many blessings to you!
 
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joined "Mold Avoiders" and went to death valley and varying other places to avoid mold, which frankly I think is crazy long term. I absolutely believe mold does make people sick, I just don't believe avoiding it is the answer. Let me clarify - I don't think a person should live or work in a place with a bunch of mold. But I want to solve the root problem, and I want to live in society
I think that the root cause is more that the environment became more toxic, not something internally wrong causing people to react to it too much.

You should do whatever you want to do but I dont think it's fair to say the approach you talked about of camping in death valley or whatever is crazy. Lots of people have healed a ton from doing that. It is the only thing that got me to go from bedridden to not bedridden.

I think it is not just about "mold", but about the overall microbiome. The microbiome in areas that make people sick Is disturbed. The areas people heal in aren't necessarily free from all mold but more balanced microbiome.
Whatever works for you.
 
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Jennifer's choice with the bolt surgery is terrifying, but I don't judge her for it. For me, I will continue to try and address my EDS more naturally. Years ago, I took high quality MSM for several years. It dramatically improved my vascular health (as well as receptor health). I went from having a picc line, my veins were so bad, to be a completely easy blood draw. When I stopped the MSM, it took about a year and my veins went back to crap. I think there is more to do to address this, and I believe I have done a lot of calcification from mega dosing D without K2.
In my case I know if I'd caught 5he inflammation earlier (I do not have Ed's, mold/infections caused my cci) I would not need surgery but even when I've healed a lot with other symptoms from meds or avoidance my cervical spine ligaments do not seem to heal. So I may have surgery
 
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Momentum

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@debored13
Please don't focus on my comment about Mold Avoiders. I tried very hard to phrase it so that I wouldn't be misunderstood. That is why I put in bold "long term". I even joined my friend for a while in the desert. I didn't say it couldn't help. I'm glad it helped you. Sadly, even with her avoidance she isn't any further along in health than I am. It's been a roller coaster for both of us.

Please do focus on the rest of my post and my gratefulness to you for posting the link :):
 

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