Joann Posted May 18, 2013 Report Share Posted May 18, 2013 Thanks for posting this video, it gave me a better understanding of what may be going on with me. I really think you did a great and extensive job, it must have taken you a while. I have to admit I still need to learn more about this but you really made this more understandable.I would like to look into some of Ramakentesh's remarks, but I do have a difficult time understanding a lot of itYou gave me some information on different drugs that may help me. You seem to think clondine may not help hyper pots. I have had a few people who have have told me that this is what they found helped them the most. For a person with an increase in blood pressure with standing, I thought the clonodine or the non selective beta may help me. I unfortunately cannot function without some medication, but the medication I am on is not working correctly. I do live in Michigan also, and the cold bothers me, so far I have not had a problem with heat. Quote Link to comment Share on other sites More sharing options...
Carrie Posted May 18, 2013 Author Report Share Posted May 18, 2013 Thanks, Joann. It's good to hear clonidine is working for some people. It's so strange how things that seem like they wouldn't work based on the mechanism actually have helped people feel better. I'd hate if my (or anyone else's) bad experiences stopped someone from giving medicine a try if it would help them, so when I do the next round of updates I'll add some more "positive" info about the medicines. Quote Link to comment Share on other sites More sharing options...
corina Posted May 18, 2013 Report Share Posted May 18, 2013 Another thank you from me as well Carrie, I really enjoyed your video!For me mestinon helped me stay warm. I had hoped it would work on standing (I seem to be low flow) which unfortunately wasn't the case, but I didn't want to give up on it due to the great effect it had on body temperature. I was on 120mg 3 times a day (could feel it stopped working after about 4 hours as I started feeling cold again). Dressing warmer didn't help me at all, I got so cold that I had to take a hot bath every day around noon and get in bed dressed warmly to stay warm for as long as possible. So for me mestinon was a "life saver" Quote Link to comment Share on other sites More sharing options...
roxie Posted May 18, 2013 Report Share Posted May 18, 2013 This is really great, Carrie! Thanks for posting. I can tell you took a lot of care in putting this together. Quote Link to comment Share on other sites More sharing options...
Sheila1366 Posted May 19, 2013 Report Share Posted May 19, 2013 Thanks so much Carrie. I have only gotten about 30 mins. into the video, gotta take a break and try and get some sleep....but what I have seen so far is so great. You have helped me so much. I go to Vanderbilt in July, I am going to watch this a few more times and take notes...going to help with my visit for sure and with some questions I am gathering up to take.Thanks again for sharing. I am going to have my family watch this too. Quote Link to comment Share on other sites More sharing options...
Carrie Posted May 19, 2013 Author Report Share Posted May 19, 2013 Thanks, everyone.Corina, very glad to hear the Mestinon helped with your temperature regulation, but too bad it didn't work for some other symptoms. Inability to stay warm is awful! I've added that medicine to the list in the annotations for the video. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 24, 2013 Report Share Posted May 24, 2013 Carrie. Thank you so much for sharing your well thought out and organized presentation. I finally had an opportunity to view it in its entirety and was very impressed. I gained a much greater understanding of what NET deficiency entails. Janet Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 27, 2013 Report Share Posted May 27, 2013 Carrie,I should also have included informative in my previous post to describe your lecture. I plan on re watching portions of it that became a bit complicated for me to follow.I have also found that mestinon helps me with thermoregulation problems as well as other issues.Thanks again. Janet Quote Link to comment Share on other sites More sharing options...
Carrie Posted May 27, 2013 Author Report Share Posted May 27, 2013 Thanks, Janet! :-)Glad to hear about the mestinon. I added a Youtube annotation bubble to include that medication now, as well. Not being able to thermoregulate feels awful, so I'm so glad you've found something that helps at least a little bit. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted May 29, 2013 Report Share Posted May 29, 2013 Well done! Thank you so much for sharing your wisdom and insights with us. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted December 20, 2013 Report Share Posted December 20, 2013 Just bumping this for anyone who hasn't seen it Thanks for all the work you put into this and for sharing it, Carrie! Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 20, 2013 Report Share Posted December 20, 2013 Thank you for bumping this up. I am very interested in watching. Quote Link to comment Share on other sites More sharing options...
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