At My Wits End!!

[McBlonde]

So interesting.... about the rebound. I bet that's a possibility with all these drugs they try to treat our symptoms with.... So with the total dysfunction, how do they ever balance it out so you don't have rebound?

[NMPotsie]

McBlonde: In my case, the idea is to keep the high bp under control with the propranolol by inhibiting the ne dumps, and add the salt and fluids to keep it up high enough that I don't experience OH without it (and thus, get the rebound effect). I kind of understand it, but I can't really explain it better than that. I still do get surges, though; I have medical accomodations at work to keep me from standing more than about 20 mins or I will experience a drop and subsequent rebound, though they aren't as severe now. I get only in the 150/100 area, instead of crazy 180/160 area. The worse surge I've had since starting the meds is 156/126, but I took the bb and xanax and was able to rest (before, I was manic when these surges happened, like a crazy person); it came back down within an hour or so. I had to stay in bed the rest of the day, and watch for it to get too low, compensating with salt and fluid when it did. The important thing is that I wasn't layed out for a week afterward (just had miserable headache that lasted 3 days, but I can live with that once in a while).

Kor: I buy the flavored ONE coconut water because it tends to be cheaper (my store often has it for 69 cents) or Zyco when it's not, and put salt in those. I also drink a powerade when I wake up, with salt in it (which I put in the night before), and take a pedialyte to work with me to drink in the a.m. I drink Herb Ox Chicken buillon cubes bc they don't have msg and have 1100 mg sodium each. I put salt in those too, and drink one in the a.m., one at lunch, and one at night. I just buy whatever sea salt grinder is on sale, though I know some prefer Himalayan (I don't care). The chocolate is Ghirardelli, and I get a bag of individually wrapped ones at Walgreens and eat one every other day or so (i have to watch the caffeine). I also eat the 100 calorie snack bags of micro popcorn at night and salt that, and I do a lot of sunflower seeds. I don't eat the seeds for the most part because they are very high in fat, but I do suck the salt off.

When I first got sick I thought tv dinners and ramen were the answer, but it turns out they have very little nutritional value and that's just bad for our malabsorption, so I have turned to regular foods that are high in salt, like celery and garbanzo beans (I eat a lot of hummus and salt that too). I eat melon with salt, a lot of organic canned soup for lunch (barely heated because if it's hot I get dizzy), and a lot of veggies with the highest sodium natural dressing I can find, or I make my own dressing and salt the heck out of it. I cannot stomach lettuce since I got sick (weird pots side effect!), so I just do raw veggies. I can also eat a lot of salt in peanut butter, so I eat a spoon in the evening sometimes (depending on my weight, cause that's just fattening LOL). Cottage cheese with salt and pepper is great, though dairy can be iffy for me. Ketchup is great with salted, sliced potato wedges baked in the oven, as well as soy sauce on meat, rice, hamburgers, whatever.

That's about it. Hope it helps.

[Kor1212]

NMPotsie that's great advice. Thanks for all the great ideas! I already had the salt everything down! I've been doing sunflower seeds, pretzels, pickles, pistachios, V8(with added salt), hummus, salsa, G2, sea salt, etc.

[McBlonde]

NMPotsie.... Great job explaining. I get the NE dumps, too. Maybe mine changed from BP of 80/60 normal with drops in BP on standing to NE dumps with some hypertention & BP surges up or drops down because I am salt loading and drinking the large amounts of fluid?

For me, one thing that has never changed even with Florinef and lots of salt and fluids recommended are the orthostatic drops or surges in BP.... Is it possible that it's your propranolol that is stabilizing the drops and surges of BP?