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April 10, 2017 at 8:33 am #1103LenaParticipant
Hello Dr. Diana and other spoonies,
first I have to say I am incredibly thankful.
For the last months I have read your books and research which made me feel validated for the first time. You’re just such a kind person. Now I’m writing to you because of something new I discovered about myself and I really would appreciate your opinion.
[A quick summary: I have POTS, most certainly EDS type III, dermatographia/skin-writing, GI problems, probably MCAS and others. Plus, I am very easily startled and have high anxiety.]
It recently became clear to me that I’m living on a 25-hour day. This means, I can only fall asleep an hour later every day no matter what I do. (Believe me, I’ve tried everything.) So I am forced to live on my own schedule and it gets pretty lonely.
This is a circadian rhythm sleep disorder that goes by the name “Non-24-Sleep-Wake Disorder” which it‘s incredibly rare for sighted people to have. As of 2005, there are only about 300 reported cases in the whole world. It took me years to figure it out.
After reading your books I was wondering about a connection between IIH and Non24:
You found out that in many cases the brain of us POTS/EDS patients is being pushed down on the hypothamalus which is a part of the brain not only controlling body temperature, hunger and thirst, but also fatigue, sleep AND circadian rhythms. As a result, when I read that there were cases of sighted people with tumors just over or near the hypothalamus leading to Non24, I thought pressure on the hypothalamus could lead to Non24 or other circadian rhythm disorders as well?
Does this make sense to you or do you have any other ideas?
I haven‘t yet been able to get Diamox from any doctor although all the signs are there that I need it.
Thank you (all) so much and many spoons to you!
Greetings from Germany,
P.S.: I’ve attached my sleeping pattern of the last 60 days as an example. Blue lines means I’m sleeping. Every day I go to bed about an hour later, so after 3 weeks I’m back to where I started.
More info on Non24 can be found here: http://www.circadiansleepdisorders.org/docs/N24-QandA.php
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