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I dont know about you guys, but I love this doctor. He has such an interesting story as well.

Anyway i was reading that for POST he suggests increasing magnesium.

He also encourages people with autoimmune diseases to start his 'anti-inflammatory' diet and to avoid foods that are known to trigger autoimmunity like dairy products, etc. He even suggests TCM medicine or fasting for out of control autoimmune disease.

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Yeah, I like him too. He's here in the state I live - Tuscon. I actually saw a colleage of his at Mayo - they trained together and are friends. This doc is also into alternative treatments and spent over 3 hours with me. My insurance didn't want to pay him - but, I found my time with him to be some of the best hours of my whole visit. Really liked the guy.

I reasoned out a few years ago that the first thing that they suggest with MS is to get off of dairy and I took myself off of it. It couldn't hurt to try everything suggested for autoimmune issues - when we know we have them. I'm not perfect with it - but, it does seem to make a difference. My newest endeavor is to eliminate all grains and refined sugar. Doing pretty good with it - though not perfect.

I had myself found - like in Dr. Weil's post that tumeric and ginger are really good for inflammation and pain. But, stopped a while back when we were all discussing whether or not tumeric depleted NO. Since I think I need more NO. But, starting to think maybe getting inflamation and pain under control may be more important - right this minute. Maybe can up things to increase NO and still get the befit of the tumeric. Anyone got any ideas on this?

Issie

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Stevia? My jangles - if that worked I shouldn't have any problems with TNF - I use tons of that a day. Everytime I drink my lemon water - stevia goes in it. So, guess that's not working.

Maybe, will try the tumeric again - because it really does help my pain problems.

Issie

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Correct me if I'm wrong, but isn't Magnesium also used by some for migraines? If so, the inflammation theory might well prove true. I know I've come across a few articles over the years which suggest heart disease may be caused primarily by inflammation as well.

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Patients with depression have levels of CNS TNF alpha that are similar to those found in inflammatory illness. TNF alpha expression is increased in CFS, Fibro, most inflammatory diseases (locally at the site of inflammation) and can do crazy things to hemodynamics (lower nitric oxide bioavailability, increase eNOS expression, increase levels of AMDA) and it also acts as a small vessel constrictor. Add to that its ability to decrease or even abolish serotonin production and increase the sensitivity of sodium channels that sensitise the CNS to the sympathetic system (sound familiar? increased pain sensitivity and startle responses).

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Okay, so if we work on our TNF issues - maybe all of POTS would get better - if that is the key to what is causing it with some. Us, with autoimmune disorders - possibly? Inflammation is thought to even lead to things like diabetes and heart disease and cancer. So working on inflammation and TNF may be the direction we should purse. Makes a WHOLE lot of sense to me and a direction - I've already started in. Just reconfirms some conclusions I'd come to in regards to myself. Thanks Rama!

Issie

Oh, and yes magnesium does help with migraines and it also is a good sleep aid and relaxes muscles - helps calcium to be absorbed properly and so many other really good functions. They have found it to be useful with MS. And, another tidbit of info - if you crave chocolate - likely it's because you need magnesium. Chocolate is high in magnesium. I just had some - yum!

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Oh my... With my post concussion disorder and cognitive problems I was struggling to follow along with this... And feeling quite silly- but I really hope I can ask a stupid question because I'm intrigued. I just received a voicemail from my neurologist on Friday telling me that he wanted me on magnesium RIGHT AWAY but didn't specify WHY?? Of course it was after 5pm on Friday so I couldn't reach him to ask- but how does it benefit one with autonomic neuropathy? I saw the migraines- which is great- do you think it would help with any headache or just migraines? I get frequent migraines (well maybe I should say infrequent compared to some- but 2x a week on average which is enough for me) but it is rare that I DO NOT have a headache related to my concussions.

Thanks!!!!

Jen

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Jen,

I know they are using it with MS and maybe since they are thinking that your autoimmune issues are causing a good bit of your POTS issues - that could be the connection. Just guessing. It does help me with my headaches. It will slow down your heart rate and can however, lower your blood pressure. So, you will need to carefully mointor that - because it will drop mine down. I need mine to drop because it's too high - but, have to be careful how much I take. It can also cause diarrea - so if you get that - then you need to cut back on the amounts that you're taking. This is a good sign of too much. An old rememdy for pregnant women with high blood pressure is epsom's salt in water - it's magnesium and will pull the bp down. (But, it will also give you the trots.) :)

Issie

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Like with everything, it depends on the individual. My daughter has tried magnesium at at least a couple of points in time with her POTS journey and has found that taking magnesium directly correlates to weakness in her legs. In doing some reading we learned that magnesium causes dilation of the blood vessels. Thus it makes sense that it can have a negative effect when pooling is an issue with POTS.

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Issie,

Lovely :) thanks for the warning though!!!! I'm so hypotensive I'm wondering what he was meaning it for. Does it help with breathing at all? I've had a lot of breathing problems and gasping for air lately. What's the usual dose? He didn't tell me that either :) Once a day? And when you "drop" in BP, what kind of a drop should one expect on average (I know we are all different)....

Thanks!!!!!!!

J

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Okay.... I tried Magnesium over the weekend like my neurologist asked as i stated above. Saturday I took it only in the evening and did the same yesterday. I just took 2 tablets on Sat. (he didn't give me any dosing instructions) but after Issie's warning yesterday about lowering my BP last night I took only 1 until I call him and find out: why am I taking this and how much.

I don't know if it was a coincidence but I had 9 syncope spells yesterday. I told my husband it was Syncope Sunday lol. I haven't had that happen since Nov. when I was still walking. I still have 1-2 a day even while crawling but this was crazy. I had a rolling walker thing that I use- not to walk but kind of as a wheelchair. I sit on the seat and get pushed by my hubby. 5x pushing me the 20 feet from our room to the bathroom I was totally unconscious before we reached the restroom. The other times were me crawling to get this or that and once was trying to get downstairs. Sigh... That could have been bad lol but I guess I kind of just gracefully tumbled down. And the good news is that I have a couple bumps and bruises but no injuries and my noodle stayed nice and safe because I put my helmet on after syncope # 3 whenever I got up.

So I'm wondering if it really lowered my BP that much? So Sat late afternoon/evening I took and yesterday 250mg. I never even checked how low my BP was- but when I'm lying down its almost always going to be fine and I wasn't going to sit or stand just for numbers. I think I know from the fainting and 180 HR it was pretty low. But it doesn't seem likely that it would make a difference THAT fast- after ONE day? Oh BTW- all of these occurred after 5:30pm last night- except 2 which I thought nothing of because that is normal.

So Issie- or whoever else wants to jump in- what are your thoughts? Would it be typical to lower my BP that fast? I don't know if those doses are high or not. I did not get any of the side effects you mentioned- thankfully. Don't notice a difference in headaches yet either, but again, I'd expect that to take time. Maybe I was just having a bad day?

Jen

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With me it works pretty fast and I can only use 125 mg. or it's too much. And I have high bp's. So, you may have used too much. It will make me sleepy within about 30 minutes to an hour. So, yes it works fast. I just posted an article I found on depression and magnesium and that they are using it for people with head injuries and for major depression. Thought it may give some insight and it also talks about the sodium and calcium channels and a connection to glutamates. Very interesting.

Issie

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Jen,

Was just reading the article I just posted on magnesium and they are using magnesium to help with dizziness and repeated fainting. They are using it to treat depression also. Also, one lady short term memory and IQ improved after brain injury. They found that some people are very sensitive to calcium and need more magnesium I can understand why your doc is wanting you to use it - after reading this article. (Funny, I've never done well with any form of calcium I've tried to use. This article kind-of explains why that may be.)

Issie

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Interesting about the memory- yes that was one of my major cognitive losses- short term. Well I can't say it helped with the fainting LOL.... Because I fainted every time I was out of bed- but maybe I took too much like we already said. I'm going to go do some research on my own now. Thanks Issie!!!

Jen

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