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Carrie

New 2-Hour Lecture On Pots And The Autonomic Nervous System

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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 it

You 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.

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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.

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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"

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This is really great, Carrie! Thanks for posting. I can tell you took a lot of care in putting this together.

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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.

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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.

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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

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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

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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.

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Thank you for bumping this up. I am very interested in watching.

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