JaimeS
Senior Member
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- 3,408
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- Silicon Valley, CA
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Okay, "It helped somewhat" it is.
Prednisone makes me want to stick my head in the gas oven immediately.I took 1/4 of 5mg prednisone this week (1.25 mg), two days in a row and experimented serious worsening of my POTS and severe agitation + insomnia. 4 days later, I am still struggling with it. So I quit the prednisone just after this two days attempt to raise somewhat my cortisol level (from a saliva test, I am low normal at 8.00 then really low until evening).
Low blood sugar or something
I took 1/4 of 5mg prednisone this week (1.25 mg), two days in a row and experimented serious worsening of my POTS and severe agitation + insomnia. 4 days later, I am still struggling with it.
One way to counteract MCS is alka seltzer plus or baking soda in water. I would take some with me and drink it while I was there.
Prednisone makes me want to stick my head in the gas oven immediately.
Medrol is OK...until about day 3.
But HC and dexamethasone don't have any negative effects on my mood.
But some people do fine with pred/Medrol. It's really a matter of trial and error for everyone to find the "right" dose and form of steroid that will alleviate symptoms without causing new problems.
Worsening of OI is probably from a decrease in aldosterone production which is why many people also need Florinef when they are on steroid replacement.
I'm going to hold off on the
Vitex for now. I'll talk to my NP about it. I'm starting too many other things and don't need to add to the confusion.
A huge part of my breathing is infection because I had a lot of relief with roxi.
Mine has nothing to do with seasons. It's there, the same all the time.
the agitated feeling is weird : it is "right in my head", it doesn't induce any burst of energy/movements. The agitation is in the brain itself, and goes along with extreme exhaustion
Yes. Excessive nighttime urination is also a sign of low aldosterone.@Ema, I have problems to understand how the whole thing works and how to find the right way to support adrenals. Perhaps another symptom may indicate indeed that taking steroids leads aldosterone production deficiency ?
After taking the steroids, I pee the whole night long, can't retain any fluids though I try to compensate with some additionnal sea salt.