Magnesium!!!

[POTSMama]

Julie,

Thanks for the good thoughts. As a quick update, I tried Singulair but couldn't tolerate it (had a terrible episode each time I took one - - even the kind without the aspartame and red dye). But I am tolerating hydroxyzine (Atarax) well so the allergist put me on 2 of those 4x a day, with Benadryl only as needed after eating (if I feel my throat thing or flushing is starting), and Zantac 2x/day and he also has me spraying my throat with Nasalcrom 3-4x/day and swallowing it. He wanted me to also gargle with diluted liquid Benadryl before eating, but the only kind I could find that was dye-free was the artificial bubblegum flavor and that seemed to irritate my throat more than help, so gave that up. But the rest seems to be working mostly - - when the Ataraz starts to run out (after about 6 hours), I start flushing attacks, so it is clearly keeping it at bay.

I think I am starting to do a little better, but still unpredictable when the episodes are going to hit. The biggest problem is that I am still on such a limited diet, because most foods make my throat and stomach react, whack out my blood pressure, etc. I'm now able to eat a few foods comfortably without causing flushing: plain chicken, rice, lettuce, carrots. I'm trying to add one new food each day and carefully expand my diet again. I took a 2-week leave from work where I've committed to working 1/2 time but only from home, and I'll reevaluate if I'm ready to go back to the office then.

I have now convinced my regular doctor and allergist/immunologist that this may well be MCAD with my hyperadrenergic POTS (gave them some research articles as well as info gleaned from this forum, and because I am a PhD researcher, albeit in another field, I think they took me more seriously as having an idea worth pursuing). Now they've given me a the lab paperwork and a standing order to do the methylhistamine and another tryptase but I am only to do it if I have a bad flushing attack and can get to the lab right away - - and I'm not having those on these meds except sometimes late at night when the lab is closed, or when I'm too shaky to drive! But to me getting the diagnosis is not as urgent as getting me eating more and feeling more stable/functional, since it would be treated the same anyway.

I am going to try a little magnesium tonight and see how it goes...sent hubbie to the health food store and he came back with the Natural Calm magnesium citrate that Dizzysillyak mentioned and also a multiple vitamin that has no artificial colors and flavors as he is worried I'm getting nutritionally depleted in general. I'll let you know later how it goes - - but yes, it seems worth a try with the magnesium! Well, I must log off as my daughter's birthday is today and we need to go open presents.

Carol

[yogini]

Mack's Mom, which brand of magnesium do you use?

[juliegee]

Yogini, I'm frugal. I just buy plain ol' magnesium oxide from Nature Made. I know someone posted that the oxide form can cause stomach upset- never happened to me. The "Natural Calm" costs more so I've just stuck with a cheapo.

Carol, I'm heartened that you've gotten a tiny bit more stable, but I'm still very concerned with your severe symptoms- despite such a high load of meds. I'm so glad that your docs are pursuing the MCAD angle, but you are already on so many of the meds and j-u-s-t controlling symptoms. I really think you need a mast cell researcher, like the folks at Brigham & Women's- Dr. Marianna Castells- at least a phone consult.

Like you, rice and chicken are my go-to foods when eating is tough. GI stuff/difficulty eating always goes hand-in-hand with severe MCAD flares for me too. Have your docs considered gastrocrom for you. It is a mast cell stabilizer, like nasalcrom, that is very helpful for GI stuff mediated by mast cells. http://www.webmd.com/drugs/drug-14269-Gastrocrom+Oral.aspx?drugid=14269&drugname=Gastrocrom+Oral

[RichGotsPots]

Julie did you stop the mag?

[TCP]

Excellent news. I use magnesium mainly for pain and muscle cramps. I know women tend to need more with menstrual cramping, too. I think many of us are deficient in this mineral and it's well worth taking. I use the magnesium mineral oil directly on pain and that helps a lot.

[sue1234]

I had been taking magnesium for the last couple of years. Initially I believe it helped my POTS. In the last year I had been having a problem with muscle "seizures". I call them that because my muscle groups in the core of my body seemed to seize up and stay that way for the most part for days/weeks on end. Even though it wasn't painful, and this sounds crazy, the seized internal abdominal muscles seemed to lock up my intestines, causing me to horrendously bloat. I finally quit magnesium and the seizing has definitely lessened and at times completely gone away. When that happens, my intestines seem happy and MOVE the gas through, which is wonderful(for me anyway!).

I admit I am weird and always seem to have a paradoxical reaction to things.

[Chaos]

It's interesting because I was just reading an article yesterday by a local MD who was a certified midwife/herbalist before she went to med school. She said magnesium and butterburr are the two things that have been shown in randomized, placedbo controlled, double-blind scientific studies to go head-to-head as being just as effective as prescription meds for preventing migraines.

I know in the ME/CFS community the docs are all talking about how their patients are consistently low in magnesium and even if their serum levels are ok, the amount in the cells is not. However, the way to best address that deficiency seems controversial amongst the various providers. The latest statistic I read said that 50% of POTS patients meet criteria for ME/CFS so a lot of us may have this issue.

Sue- it's frustrating always being "the one" with the paradoxical reactions, huh? I know the feeling. I've gotten to where I usually just don't even bother mentioning them anymore to anyone other than my POTS or ME docs because the others just look at you with "that" look.