Hi,
thanks for your reply.
I did the at home version. my pulse increased, but not more than 30 beats per minits, it increased only about 15 – 20 beats.
Seams like I don´t have POTS like I just expected actually (yaehh). Well, but that doesn´t stop me from having these wierd symptoms.Do you have any idea, especially Dr Diana, what could go on with me?
But the beeing paralyed in sleep thing i found out that is mostly isn´t dangerous, many people have it. Ok it could be dangerous in our case, combined with EDS and other things, but in normal people it´s not a big thing, even when it is not treatable.
Hi, Honestly, Hon, you sound just like us. I can pass a poor man’s tilt test, but my heart rate went from 75 (supine) to 162 in 10 minutes on a slant!! So the poor man’s tilt table can be helpful, but can give us false negatives, too.
Your episodes of “paralysis” sound like ours, too. Palomino is right. I believe we are going into neurogenic shock due to pressure on our vegas nerve combined with hydrocephalus pushing our brain on our cranial nerves. The vagus nerve doesn’t serve the adrenal glands, which is why we can snap out of it if someone gets our adrenals going (moves us, shakes us, etc).
This pressure is likely a combination of the hydrocephalus and CCSVI (an enlarged IJV) pushing on your vagus nerve. Because the vagus nerve is posterior, it is more affected when we lie flat. Answer? Don’t lie flat. 🙂 We usually sleep somewhat on our sides, and elevated. I’d highly recommend raising the head of your bed. And tell people you live with to sit you up and get you going if they find you like that. Then you need fluids and caffeine. Any hesitation, call 911. There is a chance that CCSVI angioplasty can decrease some of the pressure, but we need to get some inflammatory cytokines under control first. Cool? Hang in, OK? You are surrounded by others going through the same thing. 🙂 Big hug, Diana