caroline

I know the feeling well. Rest helps--ativan even more though i limit my use of it because of its addictive potential. Caroline

Once i would have said "nausea" but I actually did get rid of that symptom by seeing a gastric motility specialist: Dr Snape of San Francisco. Next hated symptom is dizziness. Now if i can just get rid of that one . . . Caroline

I havent passed out once in the last year since getting my pacemaker. I got it because i had a heart blockage and wouldnt have lived without it but i am delighted to have it. Caroline

Thanks to everybody for your ideas re insomnia. I will let you know how it goes. Caroline

I have been feeling pretty well lately but am suffering from debilitating insomnia. I wondwr if others have it and if they have found solutions. I know i am anxious--preparing to move--but i don't think anxiety is thesole cause of the problem. I took Ambien for over a year after coming down with my OI. I weaned myself off it about three months ago and was sleeping okay till recently. Now no matter when i go to sleep i wake up 4-5 hours later and can't get back to sleep again. Dayrime napping doesnt work for me. I am afraid the loss of sleep is making me sicker. I will appreciate hearing about your experiences and any suggestions you may have. Many thanks--Caroline

I can't think of a better doctor than Goodman at Mayo Scottsdale. --Caroline

Today i visited Stanford's new dysautonomia clinic and saw its well-qualified director. Dr Jaradeh. What a pleasure to have somebody understand everything I said and address all my concerns. Intern under his direction was also good. It seems they are planning a full-scale diagnostic lab. (Didn't get the details.). What good news for us Californians!

I can take regular medsbut also use homeopathy. It has helped my gastric problems very much. Did so even before i saw a gastric motility specialist. Caroline

I have a pacemaker. Had to get one because of heart blockage so not getting one was not an option; i would have died without it. Seemed to improve my condition overall. Lower HR on standing and no more fainting. Caroline

I have had this sleep fainting. Really terrifying. I felt as if I was dying--falling into a deep abyss. No way i could go back to sleep.

Right, Katie.

I think people are still confused about salt and sodium. They are NOT synonyms. Thermotabs have 180 mg of sodium but 452 mg of sodium chloride (salt). Check an equivalency table online and you will find that you can convert sodium readings on a can of soup or anything else to salt readings by simply multiplying by 2.5. Eat 10 mg of sodium and you will really be overdoing your consumption, perhaps dangerously. Caroline

I was told at Mayo Arizona to take 10 grams of salt a day. Remember that salt and sodium are not the same. To get salt content of a food, multiply sodium by 2.5 . Salt tablets are one gram but i had to stop them because they were causing stomach burning and upset ppssibly leading to ulcers. . I now salt food heavily and use bouillon and soy sauce as well as consuming salty foods such as V8 and ham.

I tried Melatonin but it gave me awful nightmares. My homeopathic practitioner recommended a supplement called Kavinace, which i order from amazon.com. I take two capsules to get to sleep and one more if i wake in the middle of the night. They work very well and permitted me to get rid of Ambien. Caroline

Dani, orthostatic hypotension is not the same as orthostatic intolerance. Mayo Arizona diagnosed me with oi but not orthostatic hypotension because my blood pressure does not drop when i stand, it stays quite high. However, I do show an increase in heart rate that is characteristic of POTS. In other words there is a kind of "intolerance" that doesnt involve low blood pressure. Caroline

I saw dr g at mayo scottsdale and he was wonderful. I stayed tuesday to friday. Tests were begun immediately. Intro and final summary sessions were lengthy, complete, easy to follow. Written report (sent later) was tremendously helpful.

Corina, may i ask what ypu mean by a "stomach protector"? Is this a specific medication of some kind? Thanks for the info. Caroline

I haven't tried Lunesta, but I certainly had some nasty nightmares with Ambien. Worst nightmares I ever had, though, were when I accidentally combined Ambien with a small dose of Melatonin.

I have always detested exercise, especially the kind done in gyms with machines. But I bought a good used recumbent bike (Schwinn) and find that I actually enjoy using it. I started with five minutes a day for a week, then ten minutes, then fifteen minutes. . . . I'm working up to 45 minutes. It's especially easy when I do the exercising while watching TV. I generally feel stronger, and I can walk more vigorously on the few occasions when I go out.

Oops wrong spelling. That should be Kavinace. I order it from amazon.com

I took Ambien for a year--first 5 mg and then 10. It soon stops working and one has to increase the dosage. It is habit- forming and hard to give up. I am weaning myself off it by alternating doses of ambien with doses of a supplement called Kavonace. I already feel better. I can supply more details on the weaning process if yoj like.

Dumping syndrome is another possible motility issue that could produce vomiting.

Thanks for the information re the gastric testing, christie. Hppe your son feels better soon. --Caroline

Christyd, i was interested in hearing more about your son's testing for nausea. I am just about to have some more testing from Dr Snspe, who is a big motility expert here in the San Francisco area. I had the gastric emtying test three times and it was normal-- no gastroparesis or dumping syndrome. Now i am scheduled for a barostat test. They place a computerized balloon in your upper GI tract and inflate it. You lie there for five hours while it gathers data about your stomach's accommodation (stretchability) and sensitivity. Doesn't that sound like fun? I am wondering if your son had this test and what medications were tried. Thanks for any info you have time to give me--and best to your son. Caroline

I have had facial flushing for years. I have OI of the POTS type--pulse rises 20 bpm or so. Just got back from Mayo AZ and they didn't find any other illnesses. Hope your flushing is harmless but it would be a good idea to check it out Best, Caroline