What is going on? 
Posted: 22 February 2016 08:02 AM   [ Ignore ]  
Total Posts:  21
Joined  2015-11-22

I’m noticing tremors and shaking going on now as well as weird movement sensations when I’m laying in bed. Rocking twitching. .. I feel like I’m in a boat. There is this dizziness all throughout my body. My arms are shaky as if someone scared me.
I was not diagnosed hyper pots but I bet I have it. My bp goes high when standing.
I hope this is just a overload of norepinephrine adrenaline etc.


Posted: 22 February 2016 12:40 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

Although none of us can tell what exactly is causing this (over the internet), I remember going through episodes similar to what you describe that were likely high intracranial pressure (corking at the top of my spine). Mine gradually dissipated after being on Diamox. Looking back, we can see how I had pressure on my brain stem contributing to many of my POTS symptoms. Those episodes were horrifying but early on, I was fairly functional between episodes (this changed later—the episodes were less intense, but my functionality between episodes also declined). After the episodes, I was a mess—bad trembling, weakness, etc for a couple of days. I’m so sorry you are going through those but I hope others will pop on about their episodes… :(


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

Posted: 23 February 2016 06:12 AM   [ Ignore ]   [ # 2 ]  
Sr. Member
Total Posts:  734
Joined  2012-04-17

Quick response, this was my experience of night-time muscle reactions:-


Posted: 26 February 2016 07:05 AM   [ Ignore ]   [ # 3 ]  
Total Posts:  9
Joined  2016-01-22

I don’t know that it’s any consolation but I experience the same things. Try sleeping elevated, either in a recliner or on a foam wedge, or elevate the head end of your bed by putting things under the top two legs. That helps me reduce the shaking significantly.