- This topic has 3 replies, 3 voices, and was last updated 5 years ago by .
- You must be logged in to reply to this topic.
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.
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… 🙁
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.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross