I remember the shock and horror over my dosing protocol with mag glycinate and the daily amount I was ingesting. I didnt care. None of them were at the ER with me when I thought I was dying of a heart attack, so screw 'em .... with all due respect.
Yes, if a doctor tells you that you shouldn't try something, tell the doctor you're willing to consider a safer alternative, but that the status quo (how you're suffering daily) is simply unacceptable.
This thread is old, but for those mining the forum for information on PEA...
My early doses were 150-300mg/day, fractions of the 600mg PEA lozenge from Life Extension. These produced a relaxed "bliss" feeling I've sometimes felt with CBD, but also might've been responsible for a bad brain fog -- like, I struggled to read sentences. I don't know for sure PEA was responsible for this -- it's not like MCAS needs help to produce that kind of craziness -- but it may have been.
I started experimenting with smaller and smaller dosages. Eventually I discovered that when I haven't taken it for awhile, and then take even a mere 4mg, I reliably get that bliss feeling. But then a sort of hangover ensues for 1-2 days (marked by a strong headache and 'blah' feeling).
If I persist that dosage a few days, the hangover goes away, but so does the bliss. I've then raised as high as 36mg/day, but no longer feel anything from it.
Then several days ago, I quit cold turkey, and I'm now experiencing what might be a PEA withdrawal (headache and disrupted sleep).
So I seem to have a crazy sensitivity to small dosages far below the standard ones. I can only speculate as to why. PEA also has negative effects for me.
I also can't tell that taking PEA chronically has helped in terms of preventing an MCAS reaction. Admittedly, I'm taking doses far below the norm.
OTOH, when I instead took that 4mg episodically -- after a reaction had begun, but when I had not been taking it chronically (which would block the effect due to apparent tolerance) -- the relaxed bliss feeling it brings on may be helpful. It didn't stop the attack. But since there seems to be a relationship between the stress response and how your body learns to persist MCAS (i.e., limbic kindling), anything you can do to calm your body in that context seems like a good thing. I had occasions where I was struggling to keep myself from panicking during an attack, and the PEA was absolutely the difference in helping me calm down.
Since no one knows what ME really involves, we can only make wild--and probably wrong--guesses for why things affect us. I seem to be affected by various lipids or lipid-affecting things, so lipids could be a part of ME's dysfunctions.
BTW, CLAs (conjugated linoleic acids), which are found in ruminant meat and dairy, can get converted into PEA, so if you're sensitive to small variations in PEA, you might also be affected by a burger or milkshake. Just something to consider.
I have often wondered if degrees of blood-brain-barrier permeability could be a big player in this. I often feel like almost anything I take crosses right into my CNS and affects me mentally, necessitating micro-doses, and even then I often can't tolerate things. Of course, immune ans mast cell activation, and herx are also likely big players.