Hi everyone and Dr. Diana,
first I have to say I really admire you. I have bought your book and I have been reading your research and watching your videos for the last months. You’re really a wonderful person and so kind and lovely, thank you so much for all your work! When I was reading your book and articles I was crying a lot because it all finally made sense and I felt validated for the first time. I have also told all my POTS/EDS/CFS friends and pretty much everyone else about you.
A bit about me:
I am 24 years old, from Germany and I have (most likely) EDS type III or other, I am hypermobile, have long arms and fingers, have stretchy skin, joint pains and I have had POTS since I was very little. When I was 2 years old, I had a virus and maybe this set it off. My heart rate goes up from 70 to 170 when standing but I don’t faint. I just feel terrible and shaky and I have tons of symptoms I cannot write down because it would take too long.
I am very easily startled and have anxiety and most likely ADD and BPD (or symptoms of them). Everything is just very intense and exhausting. In Germany it’s very difficult to find a doctor who knows about POTS + EDS, let alone your theory and research. All of my symptoms got pretty much ignored until I was about 21 (when I got officially diagnosed with POTS).
Some doctors then prescribed betablockers because of my high heart rate and I’ve been taking them for some years. It didn’t really help but it slowed my heart rate a bit. During this time I developed dermatographia/skin-writing and I need to take anti-histamines every single day because otherwise everything is terribly itchy.
I have a lot of GI problems - when I wake up, almost every morning my abdomen is swollen and painful and I sometimes have to run to the toilet immediately / or I have constipation.
My ecg shows significant st-segment depressions (in II, III, aVF and V4-V6), especially when exercising but also at rest - and the docs couldn’t find any underlying cause so it was dismissed. Also, when I workout my heartrate goes up very fast (especially when doing squats?! I don’t know why) and I feel like I have no air left to breathe. It’s pretty horrible but I’m a stubborn person so I still try to workout but I don’t know if that’s even healthy for me.
(Really sorry for the long text.)
Now regarding the title of my post:
I think I might have had DSPD (Delayed Sleep Phase Disorder) in my teens but now it shifted to Non24-Sleep-Disorder. It means that my sleeping rhythm goes around the clock, I can only fall asleep an hour later every day. My days are about 25 hours long (therefor the name Non24) and this doesn’t change. I’ve tried literally everything there is to stop it and it didn’t help. (I’ve read tons of books about sleeping research.) So I am living on my own schedule and it gets pretty lonely and people don’t understand it at all.
More info about Non24 here: http://www.non-24.com/ (It’s common in totally blind people but I’m sighted.)
I haven’t found anything on your website (I hope I haven’t missed anything - yay, brain fog!) concerning this topic so I wanted to tell you about it. Plus, I actually had an idea why I might have developed it:
You found out that in many cases of people having EDS/POTS the brain is being pushed down on the hypothamalus – which I read is a part of the brain not only controlling body temperature, hunger and thirst, but also fatigue, sleep AND circadian rhythms.
So, when I read that there were cases of sighted people with tumors just over/near the hypothalamus leading to Non24, I thought a brain which is pushed down putting pressure on the hypothalamus could lead to Non24 or other circadian rhythm disorders as well?
Of course, this is just an idea but since you’ve been collecting a lot of data and doing so much research I wanted to share it with you. Maybe it makes sense or you have another idea? I think there might be a connection.
Also on another note, I would really love to know if these (on my report it says ‘pathological/very significant’) ecg changes could have anything to do with all of this? (Not with Non24, but with POTS/EDS etc.)
Does anyone else experience DSPD or Non24?
Thank you (all) so much!
Many spoons to you and thank you again!
Greetings from Germany,
P.S.: You can see my sleeping pattern of the last 60 and 180 and 360 days on the attached pictures. (Blue lines mean I’m sleeping and on the left you can see the time of the day. Every day I go to bed abour an hour later, so after about 3 weeks I’m back to where I started.)
P.P.S.: Also I hope this was the right place to write this post. If not, I am sorry! I thought it might fit best in here.