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Everything posted by RecipeForDisaster

  1. I did try florinef for quite a while... a tiny dose didn't seem to do anything but give me some edema, and as I slowly worked up, I got frequent migraines and bad edema with very little improvement. I did think that licorice helped somewhat without side effects, so I might go back on that.
  2. I make myself pick at healthy snacks, and I drink V8 and broth. I'd do protein drinks but it's not really easier on me than eating regular food, and at least I like the taste of real stuff. No matter what, I feel worse after. I take midodrine every couple of hours, mestinon, adderall, use multiple layers of compression garments, and am prescribed 15-20gm salt daily. The head of my bed is raised and I don't let myself get hot. I got some bad migraines and edema from florinef and not much benefit. I'm also on a lot of other stuf including low dose naltrexone. Nothing that lowers BP,
  3. I always find that when I'm in severe shock, I don't want to eat. I consider that normal... I'm probably not sending much blood to my gut, so my body doesn't want food, and if I eat, it's overwhelmed trying to digest. This is part of my usual worsening. I don't think I have gastroparesis or really any GI problems. I normally MAGICALLY get my appetite back when I'm running saline in, but this time I was really bad, and even though it helped, I didn't get hungry. Every other time, it's been "run and get me food!". When I'm doing okay, I eat pretty well-I'm a foodie, and I surround myself with te
  4. This is coincidental, I've been asking to try this for emergencies or times when I really need to be somewhere. The other night I had to cancel plans and run in 2L saline over 14 hours because I was doing SO badly, and it'd be so nice if DDAVP could stand in for that sometimes... or prevent me from needing it. If anyone has tips on getting it prescribed.... I would appreciate it. My neurologist said he didn't see indications for it "because my TTT didn't show severe autonomic failure". Um.... who cares? My BP is 72/45. I don't care what you call it (and doing painful and scary biopsies DURING
  5. Thanks so much to all of you-your work and the forum make life with these illnesses more bearable.
  6. I'm on "all" the meds to raise BP. Adderall, florinef, midodrine, pyridostigmine. Tons of salt and water. Still running very low. I never swing back to high, and back then I never ran low. It's very odd.
  7. I was doing fluids 3 times a week, 1500mL at a time... I was doing better, but I can't have a permanent IV, so I'm only using them when I'm in a real bind now. For me, the more often, the better... but 1500mL brings me improvement for about 36 hours. I try to put it off as long as I can to avoid scarring all of my veins.
  8. Sorry, should have clarified, I was gradually taken off all 3 hypertension meds years ago as my BP fell to half of what it was. I can't manage to keep my BP up without them! That's the million dollar question.... nothing in my life changed at all between 150/90 on 3 meds and 70/35 without the meds. I'd love to know why. I probably shouldn't have been hypertensive as an active, healthy eating teen anyway....
  9. We are all so different. I go into the low 70s systolic but I lose my vision when I get up or move quickly even if I can get my systolic up to 100 or so. I used to be hypertensive even on 3 meds to bring my BP DOWN... so I'm used to a higher BP. I can feel almost the same amount of crappy at any BP, but of course I'm usually doing my worst at the lowest. I do all kinds of exercise-anything I can tolerate, and I try to vary it. I don't give up when i probably should... I kind of forgot that hot weather was coming let's see how low I can get my BP-I'm sure I'll be enjoy
  10. Ditto for me, I absolutely never have any thirst, so forcing all that intake is a big chore... and sometimes I choke on water too. I find it bothersome to track my water intake.-I have enough to keep tabs on. I also don't have much positive effect even from drinking multiple liters of salty water in a day. No matter how much liquid and salt I take in, there's very little effect. If I run IV saline, I have a lot of improvement. It makes no sense, but it's the way I am. I SO wish someone would do research into the lack of urge to drink and link it to dysautonomia or something.... my
  11. Yes, the main reason I don't actually pass out as often these days (other than fluids if I've been getting them) is the fact that I now immediately drop and lay down wherever I am when I think I'm getting iffy. I might have to stay down for hours but it's worth it to avoid really passing out.
  12. Yep, I get very faint after exercise, sometimes during. I've passed it after a walk, or had to lie on the floor in my mud room for hours after coming back from a walk. I still exercise... occasionally I get this weird prickly itchy sensation in my legs during exercise, and my color is pretty gray purple. I'm in a similar boat as the OP here-not POTS, TTT not revealing, but I'm treated as dysautonomia, mostly NCS. I have persistently low BP for no reason all the time, though. It isn't just positional.
  13. I make mine using Lite Salt which is potassium chloride, sea salt, and a little juice for the glucose (usually has potassium or other good things too-I favor natural cherry juice). Sometimes I add a tiny bit of Epsom salt (magnesium). I don't care for a lot of sugar or flavoring, so this works well for me. I don't mind the salty tase. I have tried several kinds of commercial ORS... my doctor likes Banana Bag (it has added vitamins but I already supplement what I need). I haven't noticed a difference in how I do between my recipes and the commercial ones. I love to drink broth and V8
  14. I've been using CPAP for about 7 years. I was hoping it was the cure for all of my ills. I didn't have a clue what else was wrong with me... it has helped some issues but certainly not all of them. Still, I need it. I sleep ridiculously lightly which drives me nuts. I get a little hot or cold, there's a tiny sound or vibration, and not only am I awake, my heart is pounding and won't let up... so I'm awake for a long time. I'd recommend that anyone with a suspicion of sleep apnea get the simple at home sleep test done, at least.
  15. Oh yes exercise is very helpful. I have several doctors who have said they'd love to try clonidine, but my hypotension precludes it.
  16. If it wasn't for metoprolol helping to calm down my heart, I wouldn't sleep. I add theanine, or Benadryl if it's a really bad night, or melatonin if I haven't gotten outdoors. I still don't sleep very well but these help.
  17. I have this to quite a degree... pyridostigmine helps somewhat, but nothing else really has. I have a rechargeable heating pad on me now because I was so cold and couldn't warm up.
  18. I see him. I have other recommendations as well, sent to the above two posters.
  19. I have a very minor respiratory infection and it's throwing me way off. BP 10 points lower, HR 20 points higher than they were, I'm back to blacking out when I get up. I'm probably heading towards IV fluids for a bit... even after Adderall which was really helping. I'm very glad to have the fluids on hand, but these setbacks are discouraging.
  20. Transcutaneous pacing involves electrically stimulating your heart to beat faster through small shocks and electrodes.... I'm quite sure you'd know if you had that! And, it's unlikely you'd get to leave without an implanted pacemaker unless you had some other cure for the need for a pacemaker. My guess is what is called artifact, lines on the EKG from movement or other external factors, that caused a line that looked like a paced beat to the monitor. It can be confused.
  21. I do plan on starting at 1mg nightly for 2 weeks, then 3mg, then 4.5mg. I have some pain but I am really pretty used to it and I don't list it as one of my problems. I use TENS, heating pads, chiropractic care, and distraction to manage my pain. There are too many other issues that bother me and impede my life more. I'd be using this to improve energy and maybe modulate my autoimmune issues (which aren't diagnosed). Thanks-I hope I do only get a few nights of weird dreams! I got a dropper bottle to mix it in and will start soon. I just want to be able to see which effects are from
  22. I'm glad you know what your cause was and can get better! i skipped my adderall yesterday because I don't want to take it every single day (approved by my MD, I can take it just as needed too), and I had a very rotten day. Since I only took it for 3 days before that, and the dose is so tiny, I don't think it was just that... we'll see how today goes with adderall back in the mix! I never get rid of palpitations and that does drive me nuts.
  23. My doctors have all told me I don't need a rheumatologist... I have some joint pain but more musculoskeletal pain. I'm going to have the Mayo autoimmune dysautonomia panel run, once some doctor figures out how to order it and get preauthorization, and maybe I'll need IVIG or immune suppression based on those results. I kind of hope not but if I need it, I'll do it. I'm hoping LDN helps either way, no matter what the heck is wrong with me.
  24. I have been feeling better than I have without IV fluids in years... it's pretty amazing. I'm eager to DO things, and I took a lovely warm bath just to push my limits!! I just feel more like my old self which is so wonderful. Not like a garbage can of suffering!! I sure won't get rid of my fluids, not until they are years past their expiration dates anyway. The copay is $30 per dose! I know I will definitely crash again, and maybe I won't even be able to get Adderall continuously between insurance restrictions and prescribing issues (I should be good as long as that one doctor is a
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