Hi, thanks for letting me join. I chose to participate when I discovered a treatment thats actually helping with type 1 EM. It was after learning that this disease ran in my family and that there was an actual explanation for the things that were happening to me and upon my listening to a doctor breakdown the pathogenesis of both forms that I started a successful campaign on specific nutrients that might be a benefit.
For me the symptoms have been more neurological with the swelling of the feet and the burning sensation on the skin certainly being present but more as a side of effect of the neurological problem associated with it all. I started my course of treatments with a natural sodium blocker alpha lipoic acid I then also tried supplementing with potassium pills and even attempting to constrict my blood vessels with butcher’s broom. These various treatments occasionally assisted but after the doctor tried Ativan I went to a natural form of that which is passion flower and found that to be suitable as a replacement as well though none of these treatments actually gave any real relief. But it was after laying there and realizing that the trimmers that I was feeling in my nervous system were actually very similar to what could be present in someone who has Tourette’s or epilepsy that I considered an anticonvulsant and was absolutely floored when I discovered the news that was reported about cilantro.
It seems that there is a decanol within that plant that is being researched for epilepsy because of It’s ability to prevent convulsion specifically by creating a persistent open state to the potassium channels Within neurochemistry. Having remembered and already knowing about the issue of persistent sodium channels and how potassium is what balances that I couldn’t wait for the 4th of July weekend to be over with so that I could go to the health food store and purchase a tincture of cilantro and give it a try. For me it actually works and while I do find myself still occasionally having to take Ibuprofen and also replenishing my electrolytes since I am burning through them about 10 times faster than the normal individual I am so relieved to have something that gives me a life of normalcy again.
Because type 2 seems to be able to benefit from something as simple sometimes is taking aspirin and type 1 has seldom seen in positive response from something so mundane I felt it worthy of mention not just because somebody out there might be able to benefit from the treatment but because of the ramifications of what this might mean for the entire subject to the academic community