Orthostatic Hypotension Treatment Advice / Help

Dakota15

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Hey PR - hope everyone is hanging in there. Reaching out today to ask any advice / opinions on what has worked best for Orthostatic Hypotension (or POTS).

I recently visited a CFS/ME Specialist in California and I had the "Lean Test" administered. The Lean Test showed that my blood pressure didn't drop/change much but that my heart rate increased by 38 upon standing.

I was diagnosed with "Dysautonomia Orthostatic Hypotension Syndrome" in addition to CFS. I believe the doctor wants to try Choline and Pantothenic Acid to treat (I think).

I remember hearing before that "POTS can be treatable" but I was curious what are the standard treatment options / normal ways to attack treatment?

Any help would be so appreciative.

Thanks much and wishing everyone a great day,

Dakota
 

Intuition

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Was this a MD/DO you visited? I've never heard of 'Dysautonomia Orthostatic Hypotension Syndrome', but the heart rate increase of 38 and unchanging blood pressure is highly suggestive of POTS (postural orthostatic tachycardia syndrome).
I have not heard of choline or panthothenic acid being used to treat orthostatic issues.
Generally, the treatment of POTS include:
- Drinking lots of fluids and increasing sodium intake.
- Waist high compression stockings
- Medications, including midodrine (raises blood pressure), fludrocortisone (raises blood pressure), betablockers (reduces heart rate), and ivabradine (reduces heart rate).
 

Dakota15

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Yes, the MD I visited was Dr. Bela Chheda at the Center for Complex Diseases in Mountain View, California.

Since betablockers or other medications weren't suggested for my current treatment plan, I thought I would ask the community on here. I have a thorough initial plan to start (that targets MCAS) but I realized after leaving I didn't know if any specifically target my Orthostatic Intolerance.
 
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Intuition

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There is a huge overlap between MCAS and orthostatic issues. Mast cells release histamine which dilates blood vessels, and thr blood pressure drops. In response, the heart rate increases to help maintain the blood pressure. So you may not necessarily need meds to target the POTS itself, if the MCAS can be controlled.
 

Dakota15

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It's what Dr. Chheda wrote....I believe my blood pressure was 140ish laying down and then 138 when I stood up for the lean test (so not much change with blood pressure). She said because my heart rate increased by 38 - that it's a hyperadrenergic version of POTS.

By pseudoephedrine, do you mean like Sudafed? Just wanted to clarify.