I have been diagnosed with CFS and POTS, most people that have POTS tend to have their blood pressure drop when they stand up. but in my case my BP goes up 20-30 points. What can I do about this? I get a lot of pressure in my neck and head when this happens., so is hard to be out of bed and try to have a normal life. please help!!!
A Mayo clinic website states POTS "is the most common form of orthostatic intolerance without associated orthostatic hypotension."
You might see if your doctor is willing to do a laying and a standing norepinephrine level on you to see if you have the hyperadrenergic form of POTS. My own blood pressure goes up after a short bit of standing. I have never had this testing of laying and standing norepinephrine, but I have had my norepinephrine and normetanephrine levels be elevated above normal range before. I think I have the hyperadrenergic form of POTS. My heart rate when I stand up without sitting first after I have been in bed at night this year on a holter monitor would go up in the 140s to its peak level in the 150s. The year I was diagnosed with POTS (2004), I was iron deficient and my heart rate was going as high as the 160s.
I haven't really found much help for this increase in blood pressure problem (tried verapamil), but what I can say is if it is at all possible, don't give up on walking, even if it slow walking, because deconditioning can just exacerbate the problem, I believe.
Do you have a cardiologist or neurologist who is treating you for your POTS? There is a significant subset of POTS patients that do have a rise in BP in upright postures. (It is actually a myth that orthostatic hypotension is part of the POTS diagnosis; see here: http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196 ) There are different treatments that can be targeted to your particular case of POTS, including this aspect. What treatments/medications are you taking now and how are/aren't they working (including side effects)? What have you tried in the past and how did/didn't that work?
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