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The NORD site (a private-sector group) is different from the Office of Rare Diseases under the National Institutes of Health (the government site). You can find various forms of dysautonomia by searching the latter. As the site indicates, not all diseases are listed by commonly used names. I did find orthostatic intolerance and also postural hypotension, as well as a few others. Also, there is a separate search for genetic diseases, under which you will find familial dysautonomia. The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. The Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH). On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002). A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease. The FDA link regarding how an "orphan" gets put on the list, refers to orphan drugs, not rare diseases.

In November of 2002, President Bush signed into law two important pieces of legislation: The Rare Diseases Act of 2002 and Rare Diseases Orphan Product Development Act. You may be interested in checking out the Office of Rare Diseases at: http://rarediseases.info.nih.gov/index.html -- there is plenty of information at that site, among others. Various dysautonimic disorders are on the list, and as far as I know, the President doesn't add to or remove from this list. I am sure that there are certain criteria that must be met.

I just wanted to add that I too suffer from extreme fatigue during the day, but had difficulties falling asleep at night, especially on days when I gave in to a nap. Instead of giving me something to make me sleep at night (which usually backfires and makes me feel worse during the day, if I can even wake up), my doc prescribed Provigil. I take a very low dose that keeps me alert during the day so I don't feel the need to nap. I was able to get into a pattern where I fall asleep almost right after my head hits the pillow. Oh! That reminds me! What kind of pillow do you use? I invested in an isotonic pillow and matress pad, which has also done wonders for my sleep! Good luck!

I would see a gastroenterologist. Diverticulitis would likely present pain so bad that you would need to visit the er, as it is an inflammation/infection of diverticula. Diverticulosis may cause some pain, bloating, etc. and would be more chronic (although a lot of times people don't have any symptoms unless there is a flare up of diverticulitis). Another thing that comes to mind is colitis. I would also want a second opinion about the ovary cyst explanation, if it were me. Hope you get some answers and feel better soon!

For migraines, I am on a maintenance therapy of Depakote. It has worked wonders -- the migraines were gone within a couple of days of starting. There are serious potential side effects, though, so it is a big decision to make (as with most any drug, I suppose).

I just wanted to add that hair loss is a side effect of a number of medications, a side effect that can have a delayed onset. The reasons are varied. Often times, the medication depletes the body of a vitamin or mineral that is necessary for hair growth. I take a prescription dosage of folic acid daily to help combat hair loss, not to mention for its cardiovascular benefits. Other B-vitamins, and the mineral Selenium can also help.

I am currently taking Effexor, and wish I never started! Yes, the drug worked well for me. My migraines all but stopped for quite some time, and my other symptoms came under better control as well. HOWEVER, if you miss a dose, or don't take the dose on schedule, I have found that you become extremely sick. The withdrawal from the drug is excrutiating, and takes months to wean off of properly. I am actually going to try to come off of the drug this summer, and am not looking forward to it. The only time I have had trouble with it has been when I forgot to take it, or for example, slept in on the weekend and took it a couple hours later than usual. I get severe brain fog, vertigo, light-headedness, and on occassions where I haven't been able to take it for a couple days (when I had the stomach flu) couldn't even move my eye-balls without feeling as though I was going to die. I would advise you to do a lot of research on the drug and talk it over with your doctor. It is not a drug you can come off of easily, so if you plan to have more kids, you might want to think about that. I was single when I started taking it, and now that I am engaged and looking forward to starting a family soon after I am married, coming off this drug has been a serious concern. Also, something to consider is the longer you are on the drug, the greater the chance that you will have to increase your dosage, thus making you further dependent. I started at 150 mg. and am now at 225. It also has the potential to build up in your system and cause mood swings, irritability, and even depression. Ironic, huh? Ultimately, you have to do what you and your doctor think is best. Make sure you ask lots of questions, and make sure the doctor who prescribes it has a lot of experience dealing with this drug. If you do go on it, make sure you are well monitored and ease into your dosage gradually. If you have side-effects, it will be much easier to stop it that way. Best of luck to you!

I am an attorney. My doctors at the Cleveland Clinic believe a head injury I suffered from a car accident over 3 years ago caused my POTS. I was fine before then - healthy and active. It's amazing how our lives can change in just an instant!

I was told that the drug was developed as a treatment for narcolepsy, but that it will help symptoms of excessive fatigue. I was put on Provigil for fatigue. At times, I did have those moments where I just couldn't keep my eyes open and had to put down my head, although I didn't necessarily fall asleep. Mostly, I found myself getting up from my desk at work just to walk around, or drinking lots of hot tea to keep myself awake. I would push through to the end of the day and then just collapse when I got home. I take 100mg each morning, but my doctor said if I needed it, I could take another in the afternoon. I haven't needed it. It doesn't affect going to sleep at night, either. Things are a lot clearer for me now during the day (the less tired I feel, the less "brain fog" there is). I don't have that overwhelming sense of fatigue anymore. I get much more work done, am able to concentrate a lot better, and have a lot more energy (even at the end of the day). I haven't noticed any side effects, and it doesn't interact with my other meds. So, for me, it has been a wonderful treatment option. I hope that this helps some, Stacey

Hi, Meghan! I just recently started taking this drug, about 3 weeks ago, and find it to be a great help in keeping my energy levels up. I was getting so bad during the day at work, that I could barely function. My productivity has improved and I feel much better. I still have to get down to what the root cause of the fatigue is (I was diagnosed with POTS over 2 years ago, but the feeling of immense fatigue started only a few months ago). At least now, though, I can stay awake! I am glad to hear that you are having a good experience with Provigil, too! Stacey

This is my first visit here to this forum, but have been living with POTS for 3+ years now. I intended only to browse, but seeing Dr. Fouad and Dr. Stillman's names is what prompted a reply. If you haven't switched docs yet, I would talk with Dr. Stillman (if you do see him as well) about Dr. Fouad. He was very supportive of me when I decided not to continue treating with her. I think that she is mostly good for diagnosing, but not much else. I saw another cardiologist for some additional tests (unrelated to my treatment of POTS) who knows her and echoed my sentiments. Dr. Stillman alone has treated me now for almost two years, and I have been fortunate to have a PCP who is pretty well-versed on POTS. Good luck whatever your decision!