Review Florinef (fludrocortisone)

[Hello!]

My 16 year old(with ME/CFS, POTS and various signs of dysautonomia) has been on florinef for a month now and it has had a miraculous effect!

Here's what we've seen:
1. Dramatic energy increase- nearing vitality! The PEM has not disappeared though, so it is quite a challenge to not act on all of new energy.
2. The severe brain fog has lifted and my brilliant child has returned! The schoolwork, which had been impossible for the past few years, has begun again!
3. Light, noise and food sensitivities are dramatically better. Within hours of the first dose our family went from living in a dark, silent house, to living with the windows, curtain and blinds wide open, with singing and music playing often, even while doing schoolwork!
4. Temperature sensitivity has improved, hands are often warm again, feet are warmer, but still cold, perspiration has returned, we hadn't even realized it was gone!
5. Constipation, gone!
6. A feeling that is so strange and horrible that it can't even be described is gone!

The effects have increased over the month.

A PEM a episode early on was still quite severe, but it resolved much faster than usual.

Three days ago my child caught a cold, and underneath the cold, still feels an overriding sense of health!

 

[Hello!]

P.S. And the whole night being switched with day thing has switched itself back, magically, instantly!

My advice: persue treatment of your dysautonomias, even if you don't get such dramatic results, you might get some improvements..

 

[Cort]

P.S. And the whole night being switched with day thing has switched itself back, magically, instantly!

My advice: persue treatment of your dysautonomias, even if you don't get such dramatic results, you might get some improvements..

That's amazing Hello! Thanks for sharing that Doctors that understand dysautonomia are not common. Feel free to review your doctor as well - it sounds like he/she did a good job!

• http://cortjohnson.org/forums/reviews/practitioner-reviews/

 

[AnneVA]

Do have the potassium checked periodically. Florinef can deplete it. Some dysautonomia dr.'s may add licorice root to it as the herb acts in a similar fashion. Be wary of that combination and do extra due diligence on checking the potassium levels.

 

[Laura L]

I started fludrocortisone recently and have noticed I am able to be upright longer throughout the day and brain fog has diminished a bit for now. However I do have side effects of frequent urination and bladder twinges, slight pressure in the head, tinnitus increased and very slight sensation in lower right side of back- that just started today. The benefits definitely outweigh the side effects. Just wondering if, will these side effects diminish as I continue to adjust to the drug? Thanks! Laura

 

[AnneVA]

I'd check your blood pressure and check in with your favorite pharmacist. Wonderful to be upright, isn't it!?

 

[Female]

I recently took it, and it helped to break the spell of POTS and spring allergies.
But all of my other doctors strongly recommend avoiding any kind of corticosteroid.

Cort's article offers more encouragement, but I'm still scared.

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