[Joano]

As Mrs.D has told us, Dr. Cohen suffers from EM himself and in the recent "FootSteps" newsletter, he wrote an article about his own treatments. Phosphatidylcholine (PC), a nataural supplement he gets from Bodybio.com or Millerpharmacal.com--but cautions not to get the ones based on soy as they do not work. He also suggested Alpha lipoic acid, and said you could use up to 1200 mg/day in divided doses; and to avoid R-ALA. (This surprised me because it is one of the supplements frequently recommended here for pn.) He suggested black cohosh, an herb used for hot flashes in menopausal women.

But the thing that helps him the most is Sandomigran (pizotifen), an antihistamine and anti-serotonin drug from Canada. He says it is similar to cyproheptadine (Periactin) which only helped him a little.

He also said there is nothing that will help everyone as we are all different, and our disorders may look similar, but the underlying physiology varies greatly from person to person. He said to try many things and discard the ones that don't work. He has a website, MedicationSense.com . He is chairman of the TEA Medical Advisory Committee.

[mrsD]

Did he say why not to use R-lipoic acid? Perhaps he is unaware of the newer more soluble version?

Because studies are lacking on the newer form? What?

One of those companies uses soy sources:
http://www.millerpharmacal.com/produ...l_choline.html

The other claims that soy is the source but specially purified to remove proteins in soy:
http://www.bodybio.com/storeproduct356.aspx

So I am confused. Almost all lecithin and phosphotidyl products come ultimately from soy. Back many years some phosphtidyl products were animal sourced... cow brains...but that has been discontinued now for a LONG time due to prion disease risk (mad cow).

http://en.wikipedia.org/wiki/Pizotifen
This drug appears to be a tripan of some sort. A serotonin antagonist. There are several serotonin receptors however, so the subject gets complex.

Cyproheptadine is also a serotonin antagonist. But this drug is available in US.

Elevated serotonin levels cause flushing, tingling and burning.
So obviously blocking this reaction may help.

It might be that EM is a complex multimodal problem. I've seen that Calcium channel blockers which work for some people with this, make it worse for others, for example.

Thanks for the post...all things here are helpful for some and not others.

[Joano]

He didn't explain his reasoning about R-ALA--just said, "avoid R-ALA," after his comment about using up to 1200 mg/da of ALA.

I couldn't pull up the miller pharmacal site for some reason--I did get the other one, and it is expensive. I-herb didn't have it. I've read before that people who are hypo-thyroid should avoid soy, so maybe it has something to do with that rationale. ???

Cyproheptadine is the one that he said "helped him slightly." He did say that none of these things or other treatments will help everyone with EM. He also said there were 2 medical journal reports on these drugs, cyproheptadine and sandomigran, helping people with EM, including those in a family with familial EM. He suggested patients find a physician who is interested in them and willing to follow the guidelines available at TEA and also his website since there are so few doctors who know how to treat EM. He will schedule calls for a reasonable fee, according to his website.

EM and pn are not the same, but similar. I don't know what the differences really are or if pn people would benefit from the things he's found that help his symptoms. So many of the treatments are trial and error for all of us.

[mrsD]

You know, my left foot... which has this surgical left over trauma from years ago... turns red, swells and gives me grief now and then. My right foot does not.

When this left foot does this thing, it is worse when I am taking my Cardizem (a calcium channel blocker)..so I stop it for a while.

The really only thing that helps is the magnesium lotion. When I am on vacation (no stairs there), I don't have problems at all.
At home? This is the 3rd attack since vacation, last night. The mag lotion took it down for today. It is quite puzzling... and just an example of how complex things can be. Doctors look blank and shake their heads about this...so I am not motivated to do anything major about it. Just put that magnesium lotion on it when it flares. Otherwise it seems normal... DUH?

[dac122]

Dr Cohen's practice is listed in San Diego. So how does he go about obtaining sandomigran if it is not available in the US? I'd be willing to give it a try but have no idea how to get it.

[mrsD]

He might get it from a compounding pharmacy.

Being a doctor he can write an RX for it, and send that to Canada maybe? Or he gets it from a friend, etc.

Dromperidone, is available compounded in US....but is not FDA approved for general sale as an RX item. This drug is used for gastroparesis and other GI motility issues here. It also comes from Canada. It is OTC there I think, called Motilium.

From what I can see online Sandomigran is used as a migraine drug. Therefore it blocks certain serotonin receptors. So it looks like mostly a serotonin drug. Cyproheptadine is also active on serotonin, besides being an antihistamine. So I think it is the serotonin actions that are working for Dr. Cohen.