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Old 07-17-2016, 04:31 PM
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
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8 yr Member
Healthgirl Healthgirl is offline
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Join Date: Dec 2014
Posts: 791
8 yr Member
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Quote:
Originally Posted by stillHoping View Post
I'm not familiar with mold allergy and its treatments, but if you believe there is a chance that this is what causing your drop in BP than I would try to treat the allergy first, because I prefer to treat the cause and not just the symptoms.

From my experience (and I don't know how is it to others) the effect of high fluids and salt intake is very limited without Florinef. From what you wrote it seems that increasing the salt intake won't be enough. But I might be wrong... this is only my experience. When I try to increase the salt intake (without florinef) the POTS gets better for a few days and then my body probably adjust to it and it stops helping.

Take into account that when taking florinef it is important to get ~3gr sodium (~7-8gr salt), otherwise it won’t be effective. I found it very difficult, since I don’t eat processed food, meat and dairy, and I couldn’t tolerate it, had GI problems, lost appetite (so it was even harder to increase the salt intake), stomach ache nausea, etc. And it caused my iron levels to drop so I was very tired and weak.
When I took florinef many years ago, before I started to keep on a healthy nutrition, I didn’t have a problem with the salt, and I continued this treatment for 2+ years.

Regarding Florinef vs Midodrine, I tried just the florinef, a friend who has POTS is taking Midodrine and it helped her considerably.
Have you done tilt with catecholamine (norepinephrine, epinephrine, dopamine) tests, vaslava etc. ?
My friend and I went to the same POTS doctor and according to these tests he recommended on the Florinef for me and the Midodrine for her (and in both cases he was right, although I couldn’t tolerate the high amounts of salts when I did get enough of it my POTS symptoms were great).

Anyway the good side of all of these treatments is that although it might take a while to adjust the dosage and find the right combination and timing, it is pretty fast to know if they are helpful.
Thanks for all that!
I have the cardiologist ready for when I decide, so at least thats in the works.
I did have the tilt test and it was some kind of vasovagal thing. I don't have the report in front of me. I remember at the bottom it says cholinergic neuropathy. No one ever discussed this with me and was just told it was the reason why I have the symptoms I do. The neurologist at Columbia prescribed mestinon to see if it would help and it did not. Since she doesn't know the cause of my neuropathy and is not one to explain anything, I just see my local neurologist for pain management and now will have this cardiologist on board. I just need to find a pulmonoligst that understands autonomic neuropathy and what it does to the organs/lungs so I can try one thing at a time.

Does the florinef help with the foot pain from standing? I wonder if my blood would circulate better if I would have such pain everywhere still.
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