Kathevans, I noticed you describe something you call "tight face." I found this amazing, because I experience what I have named "distressed face." Distressed face accompanies severe anxiety and agitation.
I'm trying to deal with this slowly, but have gone through a couple of rough weeks, as I'm sure you can imagine. I notice from your signature that you are MAO++. This has a lot to do with B2 levels.
When I tried to get some clarity about what was going on by going off my basic methyl donors, the MeB12 and Folate, as well as my already low-dose Seeking Health B-Minus Complex (1/4 tablet w/ breakfast and dinner), I did not do well. My sleep decreased to almost nothing and within a week I was totally miserable and in pain everywhere. I couldn't get back onto these absolutely necessary supports fast enough. Now I am following my first hypothesis, that it is the B2 that I need most. Because B2 is used in so many of our folate and other cycles, with this particular MAO++ snp we may may need much more of it.
I have found this to be true for me. I'm actually starting to increase my amounts for the third time in about 10 months. Now I seem to have found a relatively solid base of support with 1/4 of the B-Minus 2x a day, about 4,000mcg, that is 2,000 2x/day, each time with 400mcg of Folate. Understand that I initially worked up my dosages to much higher levels--over 6 months--and was only feeling a bit wired and knew that it wasn't quite right for me.
The 'tight face', as I call it, didn't begin to occur on a regular basis until I began to push AdoB12. And then it became chronic, something that occurred every day. Very unpleasant. I haven't taken AdoB12 for a couple of weeks now.
The connection as I understand it, is that AdoB12 is one more thing that calls on folate to work, or to heal, which in turn calls on B2.
What I've discovered by keeping the Folate relatively low, is that, as long as I take about 10mg of B2/riboflavin/FMN each time I take the Folate, the tight face doesn't occur. I even began to take a small amount of B2 with my dinner-about 4 mg. Now what I've discovered is that possibly after I eat a salad, which delivers a lot of folic acid to my body, and which in my case requires folate to metabolize it and in turn the B2, I need more B2 than the 4 mg. The tight face seems to be returning at bedtime. Last night I tried to get by with a bit of valium, but woke after only 2 hours of sleep with the symptom. I sucked on 1/4 FMN for another 4.5 mg of B2 and was back asleep around 4 a.m.
B2 does do something to your circadian rhythms, though, so I was awake again at 6. Breakfast then, the B-minus and 1/4 FMN, folate and B12 and I was back to sleep from 9-11. I suppose it sounds pretty awful as far as sleep goes, but, frankly, I feel pretty good right now, 3 o'clock after lunch and my nose just beginning to drip (my body letting me know it wants the next dose of folate!)
Tonight I'll take about 10 mg of B2 with my dinner and see if that improves the pre-bed tight face and helps me to sleep less disturbed through the night.
I don't know, of course, but I believe this is helping. Little by little.
I wound up in the hospital after all on May 8th. Acute pericarditis and atrial fibrillation concurrent with an undifferentiated autoimmune attack (thus the profound pain I was suffereing).
But I'm ahead of myself as far as your serious issues now are concerned. This sounds horrible. Traumatic and worrisome, as anything to do with our hearts is. I hope you are on the mend and under a good doctor's care.
That said, let me share a bit more of my personal experience with you.
About three years ago I began to have irregular heartbeat issues that included pvcs (premature ventricular contractions), atrial-fibrillation and other irregularities. Oddly, these issues occurred almost exclusively at night and seemed to be positional. In addition to going on a beta-blocker, and going through Gupta's Amygdala retraining--which, btw, had NOTHING TO DO WITH the problem!--I had to sleep almost sitting up for at least a portion of the night, sometimes the entire night. This went on for about a year and a half. You can imagine...
As this symptom began to decrease, I noticed that my pain levels were getting much worse. By then I had found Phoenix Rising and was overwhelmed by all the information here, just reading and taking it in. But I began to have suspicions. The major one being that the B-Complex I was taking was causing a 'Paradoxical Folate Deficiency', which is to say, I was taking enough folate, but because of my genetics, my body couldn't process it without more B12. And that folate with nowhere to go was causing all sorts of neurological problems.
It took me about 6 months--sounds strange, I know, but my mood levels of depression and pain were so intense I kept going back to lower and lower amounts of this B-complex, until one night after taking 3/4 capsule I had a reaction that nearly sent me to the ER--shaking, teeth chattering, feeling as if everything in my body was banging up against itself. My note to self at the time: NEVER TAKE THIS AGAIN!
So, I found Seeking Health's B-Minus and began to add the B12 first. It shouldn't have been too much of a surprise that the first dose (about 1/16 of an Enzymatic MeB12) of this supplement that my body needed so badly sent my heart into atrial fibrillation for 2 hours. No one in the ER believed this could be it, but we know better here.
I never had that reaction again, though, and slowly began to titrate it up, as well as the Folate. Now the issue seems to be to take enough B2 to help the folate to cycle and not cause this tightening of my facial muscles (and neck and trapezius, etc).
As to your mention of COMT++, I have that as well, and Magnesium Citrate powder, mixed into lemon juice with my meals was one of the earliest things I did--even before arriving at this site. I titrated up with this, as with everything, beginning with magnesium drops made by BodyBio. This way you can go a drop at a time. I took it for my heart, of course, and found it helped. Now I take 400-600mg a day, no problem. My cardiologist said that many of her heart patients always carried magnesium with them to use just in case. I see that there may be some drug interaction of magnesium with the prescription. Ask your doctor. Who knows...
Slow and steady to you. I send along my very best wishes for your healing. Finding your path is the trick. This site has been so very helpful to me.
Kathleen
I need 23K folate per day, but it's helping so much, I just love it. I would even increase it for a while, if I hit more folate-insufficiency symptoms, as the healing revs up. So much is healing now - even old skin issues.