There is some research being done but not too many large studies. Since this is most probably a hypofunctioning of our Sympathetic Nervous System, what seems to work best is the Central NS meds such as Dexedrine, Adderall and Vyvanse. There are other medications being used which may be worth looking into, especially if the first option is not available to you.
There is no single, accepted gold standard treatment for idiopathic cyclic edema. Several different treatments have been reported. An older report indicates that the herb ginkgo biloba may be useful in treating this condition. An agent used for treating high blood pressure called Captopril has also been used with success. Other medications used are Metformin, Bromocriptine, and Spironolactone (Aldactone), and Calcium dobesilate. While overall the CNS medications have been most effective, it does not mean you should not try these other options which may be more accessible to you first.
Due to the nature of this disorder, strict salt intake is not required. Taking in a healthy amount of salt which would be found in a healthy diet. Low carbohydrate diet is recommended by GARD (Genetic and Rare Diseases site). I personally have found this to be very helpful.
Treatment of idiopathic edema should begin with the elimination of diuretics, especially the chlorothiazide series. So many of us have been down the road of taking diuretics only to suffer rebound which makes it so much worse. Remember, the fluid is lost before the Loop Of Henle making diuretics a moot point and not effective in treating this disorder. Sites are finally recognizing this and recommending removal of diuretics before treatment begins.
Most important, get a physician who is open minded and willing to work with you. Journal all results to help you see what is truly working for you.
