Ehlers Danlos & POTS links

I’m going to try Dr. Levine’s exercise protocol for POTS. Mine seems to be worsening. :/ I have autonomic function testing this week (for enrollment).Last week my supine heart rate was 56 and standing for 1 minute it was 103 so I expect to fail with flying colors.(I’m lucky – Vanderbilt is local to me.)I’ve never been on Florinef but it is an option if the exercise program doesn’t help. I’m hesitant because of the side effects seem to be not a good combo with EDS?

Sodium and water retention
Swelling due to fluid retention (edema)
High blood pressure (hypertension)
Low blood potassium level (hypokalemia)
Muscle weakness
Increased susceptibility to infection
Impaired wound healing
Increased sweating
Increased hair growth (hirsutism)
Thinning of skin and stretch marks
Disturbances of the gut such as indigestion (dyspepsia), distention of the abdomen and ulceration (peptic ulcer)
Decreased bone density and increased risk of fractures of the bones
Difficulty in sleeping (insomnia)
Weight gain
Raised blood sugar level
Changes to the menstrual cycle
Partial loss of vision due to opacity in the lens of the eye (cataracts)
Raised pressure in the eye (glaucoma)
Increased pressure in the skull (intracranial pressure)

What do you think? The skin/bone stuff is concerning (Classical EDS) & also the Glaucoma (family stuff).

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  • Yvette  On December 23, 2011 at 2:21 am

    I take Florinef and it's not a regular steroid like Prednisone, so you don't get as much the big side effects like a lowered immune system, wounds not healing, etc.. I only get hypokalemia from it, so I take potassium supplements. I've never noticed anything else.Also, that last article is fascinating. You always have the best links.

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