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Everything posted by RecipeForDisaster

  1. All I can say is that we are very similar... and I'm frustrated too. I'm barely functional, can hardly eat, sleep, or exercise although that's a central feature of my life and I'm very fit. My temperature fluctuates from one extreme to the other and I I don't sweat, either. I don't have POTS, my TTT was inconclusive (partly due to the fact that I have painful and scary biopsies during it!)... but I'm persistently very hypotensive and forget about bending down! I avoid changing my clothes and if I drop something, it stays on the floor. I don't let myself lay down much unless I'm really about to pass out. I think about it and fantasize about it nonstop, though. I tell my doctors I feel like I have lost all of my blood but am also full of caffeine. I could pass out pretty much any time these days, and I black out very often... I'll also collapse a lot. I'm prescribed 15-20gm salt daily. I crave it, but I don't think it helps much. It doesn't matter how much fluid I drink. I hope you get answers and help... and if you do, please share! I don't know if we should feel better that there's someone else out there like us...
  2. I had a hard enough time getting saline-I'd love to try lactated ringers, but I doubt I can. I'm not even sure I can get a refill on my saline! i won't have any chance of trying DDAVP until the cardiologist gets back at the end of the month. Even then, I'm not sure he's going to do it. But that's good to know... I'll go for the tablets. I just don't really know where else to turn... often when I really need IV fluids, I am alone and can't get an IV. Plus, I can't get a new IV every 2 days and it doesn't last longer than that....
  3. My husband is a nurse and we are both EMTs. If I had another hand, I could put an IV in myself. Yes, if I come up with something on the Mayo test, it'd likely lead to IVIG. I wouldn't look forward to that, but wil do it if it's the answer! What I meant was that I don't know if I want to come up positive for something or not. An answer would be great, and I have a positive ANA and seem autoimmune, but who wants an autoimmune disorder? Anticoagulants are something I avoid very much since I fall and get hurt so often. I don't have a great immune system, either, so it's not just the clot risk but the infection risk that keeps me from a PICC or a port. My cardiologist wrote again and said he'd consider letting me try DDAVP when he gets back from a trip. I don't think it's going to be magic for me, but might be a useful tool. I was hoping for nasal spray for quicker action, but the dose can't be adjusted that way...
  4. I will try again-it's weird, I went off licorice to go on florinef... who would think that the licorice would be more effective? I am not surprised that it had fewer side effects. All I know is that I'm in really bad shape with few options. My husband just wants to put an IV in almost every day. I'm layering more compression on top of compression and going up to the full amount of adderall I can take (I don't love how my chest feels on it, but oh well). Feet up whenever I possibly can. I drank a liter of V8 while my IV was running! I'm getting the Mayo autoimmune dysautonomia panel run this week. I don't know what results I am hoping for!
  5. 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.
  6. 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, though. I didn't pee at all after the first liter of IV fluid. That's crazy. I otherwise pee basically whatever I drink, no matter how salty it is.
  7. 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 tempting and delicious things that I know I usually want to eat. I eat snacks almost constantly when I'm doing okay. I know the ER won't be able to help, and I don't even think most doctors want to see me. It's really depressing. I've recently been cleared by an endocrinologist who was pretty useless and only wanted to see if I had Addisons, and I saw a different one a few years ago who didn't really help. I actually don't have nocturnal polyuria at all. I do pee out most fluid I drink, which makes no sense, because that doesn't happen with IV saline even though my oral solution is the same osmolarity. I have multiple clotting disorders, so unfortunately permanent access of any kind is not allowed. Otherwise I believe I'd be doing daily saline and managing a LOT better. It helps me so much. I also don't have much support from doctors on that- most don't think I SHOULD need the fluids and don't want to prescribe for them. Sorry, as much as I don't enjoy getting the fluids, I DO need them. I can't explain why, but I do. I need a new IV every time because of the clotting. The saline did help dramatically... air hunger, chest discomfort, blacking out constantly were all improved by a ton. It really scares me how I keep getting worse despite adding more interventions, and the doctors don't seem to care. My baseline BP is at its lowest ever and I'm on a TON of meds and interventions to raise it.
  8. 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 the test does not make for an accurate result). My baseline has declined, and I haven't wanted to eat in 2 weeks. I've been forcing in 500 calories or so most days, but it makes me feel worse when I eat (dysautonomia wise-tachy, nauseous, weak)and I had a 30 hour stretch where I didn't eat at all. Unfortuately I can't really get help-two doctors didn't answer my latest emails and don't have any ideas for me. I think they've given up and some have told me to get used to the way my body is now. Sorry, I can't live feeling this uncomfortable, needing to lay on the floor, and force myself to eat anything I take in. I feel very uncared for. I'm grateful to have the fluids to bail me out, but that's not a long term solution.
  9. Thanks so much to all of you-your work and the forum make life with these illnesses more bearable.
  10. 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.
  11. 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.
  12. 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....
  13. 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 enjoying many IVs when it gets super hot.
  14. 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 mother, sister, and grandmother all share the lack of thirst.
  15. 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.
  16. 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.
  17. 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 for salt and electrolytes too. I crave salt so much, it's easy for me to get the 15gm I'm prescribed. That said, I'm struggling now despite all of my meds and interventions. It's not the salt/water's fault... I seem to keep trending downward every few months. But, I don't have POTS, it's some other disorder. Definitely dysautonomia plus more.
  18. 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.
  19. Oh yes exercise is very helpful. I have several doctors who have said they'd love to try clonidine, but my hypotension precludes it.
  20. 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.
  21. 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.
  22. I see him. I have other recommendations as well, sent to the above two posters.
  23. 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.
  24. 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.
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