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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Reverse POTS

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Reverse POTS › Reply To: Reverse POTS

June 5, 2013 at 3:53 pm #3714
Dr. Diana
Keymaster

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! 😉

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