Hi all.
I apologize in advance for the text, I write with the help of a translator.
I'm from Ukraine. the problem of edema arose when I was 20 years old, now I am 28. just like you, I went to many doctors and none of them could help me. I have chronic edema, there are no periods when they are not. Of course, this is not as critical as my family thinks, but for me it is terrible.
Once I tried amphetamine and the swelling went away the same day. I was happy. But unfortunately, Adderall drugs are prohibited in our country.
What other treatment options are there that have helped you? really need your help.
thanks for this forum. before I found you, I thought I was alone
Dexedrine analogue is yohimbine?
was it just as effective?
Thank you very much for your letter.
I have the ability to get Adderall's main ingredient. if you know what I mean.. But I don't know how to use it for therapeutic purposes and dosages.
You understand that few doctors know about this syndrome. So you have to take matters into your own hands.
Can you tell me what doses of captopril to use? And why didn't you write about Spironolactone?
And what is the name of this analogue of Adderall?
Hello!
I am sorry you to have this syndrome. I had this my whole life with varying symptoms but was not diagnosed with this syndrome until 2006 by Dr. Jerome Check in Philadelphia, US. No doctor was able to tell me what was wrong after numerous testing.
There are many symptoms with this disorder and different people will have certain symptoms and not others. It seems most of us have the edema, which is predominately in the abdomen and upper legs, but if you retain enough fluid, extends to the legs. I suffered with constipation as a child and would often have a swollen abdomen. I also had stomach issues and Gastroparesis (severe slowing down of digestion) can be part of this syndrome. Urticaria (itching and or rash) is another symptoms which I get from time to time. It is the increased cellular permeability which allows toxins to spill out into the blood stream. I can get this anywhere on my body. For some people it is their major symptom.
My mother had this disorder as well but did not understand it during her lifetime. She had the distended abdomen from fluid, the constipation and the itching. I know she had some issues with digestion as well. She had it to a lesser degree than I do. There is a genetic component to this disorder.
I have had other problems which may be unrelated to this disorder such as Endometriosis and had a hysterectomy. I always had painful and irregular periods. I also had many ovarian cysts over my younger years.
There have been many treatments, but the best and most successful is with Dexedrine, Adderall or Vyvanse. I have women in Spain and France who are also unable to obtain these drugs. I myself could no longer get the medication here in New Jersey. Dr. Check can no longer prescribe to me as the state of New Jersey would no longer allow him to do so. I was working with the state to get my medication but since I was diagnosed with Attention Deficit Disorder, I am now legally able to get the medication from my primary doctor. I never thought I would be lucky to have this diagnosis, but it helps both things now.
The mistake a lot of people make is taking a diuretic. It often has a rebound effect, and you gain back even more fluid several days later. The medical reason is the fluid is lost before the Loop of Henle. I am a Registered Nurse so some people like the technical information. It also has nothing to do with salt intake as it is a defect in the cells and is unrelated to sodium. Even though the Dexedrine and Adderall are the best so far for this syndrome, other medications and herbal remedies have been used. I worked with an Acupuncturist who prescribed the herbal equivalent of Dexedrine (he worked with a reputable Chinese herbalist who supplied his office). This was helpful when I could not get the Dexedrine/Adderall). Lymphatic massage done by a massage therapist who is proficient in this (as it requires little pressure to lymph nodes). You can learn this and do this at home as well. A medication called Captopril (used for hypertension) has been somewhat successful as well. Some people have tried Metformin, which is used normally to treat Type 2 Diabetes with some success. Some of the Metformin has recently been recalled as some contain carcinogens. The article reads: However, some metformin products have been recalled by the FDA due to the presence of a probable carcinogen (cancer-causing agent) called NDMA in higher levels than accepted234. The recall affects metformin extended-release tablets from various manufacturers and lot numbers2. You can search the list of recalled metformin products on the FDA website
Ugh! Use that one with caution and some good research with your physician.
Compression wear as in body shirt or gloves can help somewhat with the fluid. Most of these treatments are probably best when combined for best effects. Another treatment one of the people on my forum used with good results is Horse Chestnut Seed Extract. I have not used this myself but I will pass it along to you.
Calcium dobesilate is a vasoprotective drug that is used to reduce capillary permeability in the body. It is the calcium salt of dobesilic acid and is sold by the pharmaceutical company OM Pharma under the trade name of Doxium in capsules containing 500 mg of active ingredient1. It is widely prescribed in more than 60 countries from Europe, Latin America, Asia and the Middle East. This may be more accessible to you.
I hope you find some of this helpful. I wish I could get the medications that everyone needs and so many are unable to obtain. I also have a lot of articles from Dr. Jerome Check who discovered how to treat this disorder as his daughter in law has it. If there is anything else I can do to help please let me know. Update me as well if you try these treatments and find them to be beneficial to you.
Eileen