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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 6, 2013 at 2:11 am #3716
PhoenixDown
Participant

Thanks for your reply.

Yes I had very severe Gastroparesis/constipation issues and the most excruciation pain I’ve been in during those attacks (felt like my insides were ripping apart). I’ve been ill a lot longer than two years, duration of my illness depends on which symptoms we’re looking at. I’ve never self diagnosed as having POTS, but like I said I have the heart rate signs.

Looking back through my notes it seems laying on my sides helped during an attack but doesn’t make it go away.

Interesting that you mention histamine, I found out that an anti-histamine I was taking triggered these attacks in a reproducible fashion, which was disappointing because for a while they helped a lot. I suspect I have mast cell issues but the doctors where I live are not fans of testing beyond a few basic bloods. Doctors in the UK are strictly told these (FM/ME/CFS/IBS/MUS) are psychosocial problems, with psychological answers. They all seem to make the grave mistake of thinking idiopathic illness is psychosocial by default, they need to be retaught the scientific method (assuming they ever learned it) and be made to practice these three words, “I don’t know”, as some of them seem to think a psychological answer is better than no answer.

This is the kind of research they favour:
http://jp.physoc.org/content/590/15/3413.full

They ignore sudden onset POTS, also check this out:

“POTS is a syndrome that is diagnosed far more frequently in young and middle-aged women than men, and by the time of definitive diagnosis patients have typically spent several years seeking expert medical opinion for their symptoms. Frequently, these individuals report a distant flu-like syndrome followed by a period of inactivity, followed by more inactivity in response to the unpleasant sensations they have while standing or doing mild physical activity. Thus, a downward spiral of inactivity and deconditioning occurs. This downward spiral can be made worse by related perceptual issues including somatic hypervigilance and fatigue that can be improved with exercise training (Benrud-Larson et al. 2003; O’Connor & Puetz, 2005). However, when these individuals seek medical advice their responses are seen as abnormal and frequently pharmacological treatments are prescribed (Joyner & Masuki, 2008).”

Basically saying: You’re merely paying too much attention to pain signals, and that you’re not really as ill as you say you are, no evidence or objective test for this “somatic hypervigilance” offered, of course, but who needs evidence when you have dogma?

I could go on & on about poor or misleading research.

PS: Why can’t I PM you? I have important (not to mention private) things to say. You are so hard to get hold of.

“The inboxes for the following members are currently full, and to send this message you must remove them from your Recipients or CC fields: Dr. Diana”

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