davecom Posted April 3, 2013 Report Share Posted April 3, 2013 Anecdotally, reading around the forums, I have noticed that many people who are on clonidine have gotten at least partially better. I am intrigued about its use in hyper-adrenergenic POTS. I tried doing a forum search and a Google Scholar search but I could find no placebo controlled (or even small non-controlled) trials of it with POTS patients. Does anyone have a link to one or more information? Quote Link to comment Share on other sites More sharing options...
Joann Posted April 3, 2013 Report Share Posted April 3, 2013 Sorry, I don't have info for you, but I am interested in this also. It has been suggested I switch to this. I have some testing coming up soon, so I want to wait until that is finished before considering changing. If there is a chance to improve, I will definitely try it. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 3, 2013 Report Share Posted April 3, 2013 I use it but have had to increase it very, very, very slowly over the past 6 years. I took away my memory @ first. If you are sensitive to medication, go very slow. It was scary. Because I didn't know. Someone had to tell me. : ( I don't have many things to use to lower my HR due to sensitivities. Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 3, 2013 Report Share Posted April 3, 2013 Several articles of interest on clonidine:http://journal.publications.chestnet.org/article.aspx?articleid=1054942http://bmb.oxfordjournals.org/content/71/1/77.fullhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3043538/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909326/pdf/nihms211626.pdfhttp://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0040111Hope you'll find something useful.Happy reading,Alex Quote Link to comment Share on other sites More sharing options...
davecom Posted April 4, 2013 Author Report Share Posted April 4, 2013 Thank you very much! Quote Link to comment Share on other sites More sharing options...
kitt Posted April 4, 2013 Report Share Posted April 4, 2013 . Quote Link to comment Share on other sites More sharing options...
davecom Posted July 13, 2013 Author Report Share Posted July 13, 2013 I was just reading your first link, Alex since I will be starting clonodine soon.http://journal.publications.chestnet.org/article.aspx?articleid=1054942It was very interesting, and I'm wondering if anyone can help me out with a few thoughts I had:- Did I read correctly that Clonidine increased plasma blood volume by 12%? Isn't 12% the same number that another study found POTS patients have a deficiency of on average?- Looking at the graphs, it seemed the post-clonodine administration standing heart rates were actually higher on average, although less variable. The supine heart rates went down. So the gap between the two actually seemed to become more-POTsy post administration.- The whole article is based around MVP causing Dysautonomia. Is that something that used to be a common conception?While these are great articles, I'm wondering if there are any real controlled studies for Clonidine in POTS specifically. I couldn't find any on Google Scholar. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 13, 2013 Report Share Posted July 13, 2013 My son still takes 2 mg of clonidine before going to bed. It has not helped with his tremors but he does not have the night time sweating issues. I have forgotten to give it to him a couple of times and my son can definitely tell a difference. Hope you notice some improvement in your symptoms. Quote Link to comment Share on other sites More sharing options...
Joann Posted July 14, 2013 Report Share Posted July 14, 2013 I was actually going to start a new discussion when I saw this link. I am currently on doxazosin and metroprol. One doctor wants me to switch doxazosin to clonodine. I am so afraid of medicine changes, has anyone had experience with these.I tried to research the differences, but I am having a little trouble with the difference between alpha 1 and alpha 2. Could someone explain this. I have episodes of high blood pressure, actually this is more trouble than the high heart rate.I have to admit I still am afraid they have missed a pheo tumor which is why they put me on the current meds I am on. Any info or suggestions would be appreciated. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 14, 2013 Report Share Posted July 14, 2013 My son has always had low blood pressure so that's the reason he has to stay on Midodrine. All I can tell you is that when he was on 1 mg of Clonidine mid morning, he had to be pulled off of it after about being on it for 4 weeks. It affected his heart rate at first. He tends to have a high heart rate. So it was helpful when it lowered it, no more tachycardia. However his heart rate started dropping lower and it also began affecting his blood pressures. It got so bad, that I could not keep his blood pressure up with extra salt and Midodrine. When the cardiologist saw this happening, he took my son off his morning dosage. The Clonidine also made my son more tired after he took it in the morning. However, the Clonidine seems to be more helpful at night. My son does not wake up drenched in sweat any more. If I forget to give him the Clonidine, he wakes up drenched in sweat. For my son Clonidine seems to help more at night and when he wakes up in the morning his blood pressures are not terribly low. So I feel like the Clonidine is probably helping with blood volume. When I started this medication. I monitored my son's blood pressure hourly. It was a lot of work, but it really has paid off. The blood pressure readings really helped the cardiologist. I will probably continue to do this for awhile because my son is off florinif. I'm trying to make sure he gets the salt he needs in the right amounts to keep his blood pressure up. Since I use a home made Gatorade mix with him, he takes salt pills only with meals now. Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 27, 2013 Report Share Posted August 27, 2013 I want to know about this as well. I'm currently on nadolol.My heart rate has been running quite low. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 27, 2013 Report Share Posted August 27, 2013 My son is on the 3mg extended release clonidine. He is doing very well on the dosage and is sleeping through the night still. His blood pressure and heart rate readings are taken after he gets up. Theses readings are good. Hoping to see some of my son's other symptoms subside in a few weeks.Rachel Quote Link to comment Share on other sites More sharing options...
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