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Posted 5/7/2022 5:40 PM (GMT 0)
My POTS is terrible and ruining my life. I cannot stand for more than 2 minutes and even when I do it feels so painful and like im going to pass out, Dr J said to not take midodrine. I already eat a ton of salt, compressions and 1-2 gallons of water. I am 21 and its so embarrassing as I was a star athlete just a few years ago now I can barely stand. What should I do? Does it go away with treatment? I used to have pots but I had no problem standing up, I then got severely worse and have been unable to stand for over a year. People don't realize what a gift it is to stand up and not have to worry. Ive been treating for over a year and no improvement in it and I am about to start Dr J protocol. I hope this goes away. Please any insight will help.
Posted 5/7/2022 6:03 PM (GMT 0)
Yes, get on IVIG. Only treatment known to control the inflammatory response causing the pots/autonomic neuropathy.

See dr younger in nyc for it
Posted 5/7/2022 6:52 PM (GMT 0)
As soon as I moved out of mold my pots went away. Nothing else helped.
Posted 5/7/2022 6:56 PM (GMT 0)
If I go back in mold for a day it comes back
Posted 5/7/2022 7:08 PM (GMT 0)
“ Does it go away with treatment? “

Mine did.

I don’t have POTS anymore
Posted 5/7/2022 8:30 PM (GMT 0)
Mine has improved with treatment, but still can get quite terrible at times especially when herxing/inflammation is high. Hopefully treatment will help yours as well. I don't have any miracolous advice other than keep salt intake high and try to eat strictly anti-inflammatory (easier said than done...even after years and years of suffering)
Posted 5/7/2022 8:32 PM (GMT 0)
I would also say that in periods of improvement when I'm able to exercise more often the POTS symptoms are greatly improved in my experience. Once I start flaring/herxing, inflammation gets out of control, I get more housebound, couch/bedridden, sedentary, maybe bad food choices creep in due to stress eating, that's when my dysautonomia symptoms really start acting up.
Posted 5/7/2022 8:34 PM (GMT 0)

dcd2103 said...
Yes, get on IVIG. Only treatment known to control the inflammatory response causing the pots/autonomic neuropathy.

See dr younger in nyc for it

I've heard IVIG is super expensive. Can you give an estimate for monthly costs and how long treatment, on average, takes to start seeing benefit?
Posted 5/7/2022 8:36 PM (GMT 0)
Oh, and one last personal anecdote and then I'll stop spamming your thread smile. I didn't really have symptoms that people relate to POTS until AFTER I did courses of Disulfiram. At that point, I was already 4+ years into illness. I can't explain why that is.
Posted 5/7/2022 9:28 PM (GMT 0)
My POTS specialist told me that to maintain proper blood volume, a person needs to divide their weight (in pounds) in half and drink that many ounces of water per a day, and NOT more unless you are sweating a lot. I weigh 112 pounds, so I drink about 60 ounces of water per day. (about two teaspoons of salt worked for me at that amount.) For a long time I drank way more than that, thinking it would help my blood volume, but the POTS specialist explained that doing so just diluted the salt my body needed to maintain its blood volume. So according to this way of thinking, if you drink one gallon (133 oz) of water in a day then you should weight about 266 pounds. If you need that much water for some other reason, then you might want to double or triple the amount of salt you consume.

There may be more to this for you than your salt-water-body size ratios, but I wanted to throw that out there in case it helps. At the time my POTS stopped, I also had started treating MCAS, including limbic system retraining. When I addressed my neurological inflammation in those ways, the POTS resolved along with most of my other symptoms.

Most people's POTS does resolve with time and treatment. I know it's so disabling, limiting, and frustrating!
Posted 5/8/2022 3:54 PM (GMT 0)
my llmd said hong kong used to sell synthetic aldosterone idk post covid...
i had to chew raw licorice sticks to go the grocery and appointments for a few month . the clearance of pathogens from adrenal area seemed to help the most . i did not use ivig i used bvt for inflammation control and pathogen reduction...do keep us posted
Posted 5/8/2022 5:53 PM (GMT 0)
Midodrine is not the only drug people take for POTS, and there are herbs people use, too. Did Dr. J have a recommendation for you try instead of midodrine?
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