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spaceorca

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Everything posted by spaceorca

  1. I just looked up this med on the web and it seems interesting--and also quite related to the other post on resting heart rate. This med lowers heart rate using a different means than other meds like beta blockers. Apparently several studies have shown a link between high resting heart rate and heart attacks, so doctors are focusing on heart rate in addition to blood pressure. This medication was developed to help reduce heart rate in healthy patients and patients with established heart disease. The controlled studies on the drug showed good results and few side effects, but those didn't focus on POTS patients. There are a few medical reports of individual POTS patients doing well with this drug--lower heart rates and improved symptoms. But those are just a few isolated reports in journals, not more general reports. Does anyone else know about this drug? It's new and, from the reports, it looks like it might have caught on in Europe and Australia ahead of the US. But it seems like something to find out more about. When I looked back at my son's medical reports I was amazed to see how high his resting heart rate is--and that's before he stands up. Yikes!
  2. My son has also taken florinef for more than a year--it has given him somewhat more energy and ability to get around. He also has a lot of trouble sleeping, and his endocrinologist recently suggested taking the florinef only in the morning. That seems to be helping somewhat. So maybe morning is the time for florinef if you take it! Debby PS My son also takes DDAVP, salt tablets, and potassium. Even with all of that, it's crazy hard for him to retain water.
  3. Here's a link to the article: http://www.bmj.com/cgi/content/full/338/fe...ourcetype=HWCIT It's a very long link--you'll have to copy all of the lines and paste them in your browser to use it. You can also find the article by going to www.bmj.com (website for the British Medical Journal) and typing in the search box: resting heart rate The first article returned by the search is the right one. Click on "full text" or "pdf" to the right of the entry and you should get the full article. A lot of journals charge for access, but this particular article is open to the public right now. Hurray! I skimmed the article and I'm not sure it's particularly helpful to POTS patients or others on this board. One thing to note is that the study included only post-menopausal women; many POTS patients are much younger, and it's hard to know if the results would apply to a younger group--or one that clearly has other health problems. The study did find that a high resting heart rate correlates with heart attacks, even after controlling for other factors (like diabetes and smoking). But that's only a correlation. I do empirical research in another field (not medicine) and one of the things we always stress is that correlation doesn't mean causation--I'm sure others have noted that here before. Often, there is a third factor that causes both events. One common example is that shark attacks are correlated with ice cream sales--but that's because both go up in the summer, not because ice cream causes the sharks to come out! The authors of this study also note at the very end of the article that the relationship between resting heart rate and heart attacks is smaller than the relationship between cigarette smoking or diabetes and heart attacks. In other words, even if a high resting heart rate does contribute to heart attacks, the relationship is smaller than many of the other commonly reported risk factors like smoking. Anyway, that's what I got out of this article! Debby
  4. Hi, I'm new here, but have been reading many of the posts and recognizing so many situations and symptoms. I'm a POTS caregiver/family member: My son Daniel has been sick since he was 15--and he'll be 21 in late May. I'm amazed at how many similarities there are between his condition and ones I've seen here! Just to respond to this post: Daniel definitely has brisk reflexes: the neurologists have commented on this. It means, for example, that his leg kicks up faster and harder than usual when they tap on the knee. This doesn't seem to be a problem in itself, but I think from what the neuros say that it is a symptom of other problems in the nervous system. I.e., the nerves are conducting faster than they should. We see it as a finding that validates--for any doctors who recognize only "objective" findings--that there is something wrong with Daniel's nervous system, even though the things that bother him (like chronic pain, fatigue, POTS itself....) aren't part of the reflexes. I can also empathize with your story about the endocrinologists. Daniel has lots of endo problems that have finally been diagnosed--diabetes insipidus, adrenal failure, and hypogonadism (very low testosterone, since he's on the male side of the aisle)--but often the endocrinologists were the last to recognize these problems. I remember once when Dan was in the hospital with intestines that had slowed to the point of possible obstruction. He was on the gastroenterology service and one of the GI interns had the idea of testing for adrenal failure. The consulting endocrinologist had a literal fit, arguing with the GI doctors in Dan's room and insisting that this couldn't possibly be a problem; the endo resident even cancelled one of the tests that the GI doctors ordered and for which blood had already been drawn. But the GI docs persisted and, lo and behold, Dan clearly had an adrenal insufficiency. Treating him for that, unfortunately, didn't solve all of his problems but it did help. I look forward to reading more from everyone on the forum. I've already learned a lot and hope I can contribute to you as well! Debby
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