I’ve been suffering from this problem for some time, it’s rather bizarre but I actually feel worse when laying down, the flatter I go, the worse I feel. I have experienced this in both chronic-mild and very acute forms (in one instance my heart went crazy & irregular whenever I lied down, as well as other horrible symptoms), in the acute form it lasted for a few days (I mean that’s how long I couldn’t lay down without really bad symptoms, my heart wasn’t going nuts for two days straight), during which if I raised my legs higher than my body, it got a lot worse.
I’ve not been diagnosed with EDS but I’m awaiting an appointment to be diagnosed. I normally have POTS-like heart rate increase when I stand up (+20 to 30 bpm, starting laying really flat) but my heart rate monitor has run out of battery power at the moment.
It’s not strictly about being “flat on my back” it’s more of a continuum from upright to flat to flat with legs raised higher than my body. There’s no paralysis.
Any suggestions?
Hi PhoenixDown, I know what you are talking about! When I was first sick, the doctor didn’t suspect POTS because I had some of my worst symptoms while lying down! I almost fainted once, LYING DOWN. Ditto with my son. I had weeks where I didn’t have 3 normal heartbeats in a row. This could be from a few things, and for me, I had to peel back the layers one at a time. Do you have any symptoms/signs of hydrocephalus? Histamine problems? Gastroparesis/constipation? If you could fill out this symptoms checklist, it will help us figure out what is going on. The checklist is here: http://prettyill.com/resources/view/symptoms_checklist
I don’t think you are alone with this, but I’ve noticed that it is more typical for those who haven’t been sick for very long (less than a year or two, perhaps?). Thanks! 😉