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Everything posted by RecipeForDisaster

  1. You know, I'm not sure compression is good for my terrible circulation either-my extremities are cold and gray or purple. I've never had amazing results from even waist high compression, so I don't believe it'd be worth it. I just layer tight spandex pants over my knee high ones. the SCDs seem fairly easy to get on and since they inflate and pump... they seem more helpful.
  2. I take licorice with it (florinef gave me frequent migraines ) and a ton of salt. Good to know, I'll alert the doctor today. I totally get heat you're saying-I don't want to scare them. I tried not taking any DDAVP today as I won't be upright much. Interesting idea on the butterfly IV set! That does sound pretty easy one handed... but yes a long time to leave the needle in.
  3. I'm taking it in the daytime. He has prescribed 0.2mg twice daily! He is a hematologist so totally winging it. He asked ME what dose I should take-I can't fault him, at least he is trying to help. He ran tons of labs (including sodium) on Thursday, but I don't have results yet, and my sodium does tend to stay on the very low end of the range. He's an hour from here so I can't get there for labs anyway-not even to his hospital system-and he hasn't ordered follow up labs. Yesterday I took 0.025mg and this morning I took 0.05mg. I passed out for the first time in a long time, yesterday, BEFORE I got my hands on it, so I wanted to get a boost to avoid IV saline. My plan, approved by another doctor (who didn't have the guts to prescribe this, sigh) , is to take it when I need it, for now. I just don't know the dose yet as I'm trying the tiniest amount. I haven't noticed a big difference, but I'm certainly not hypERtensive! I don't get thirsty, so it's easy for me not to drink too much. I'm probably taking 1500mL fluids these days. I did wake with a headache, but I often do.
  4. That's the thing-compression helps, but not much, which is why I don't bother with taller or more compressive stockings. I've tried them... I'm using knee high 30mmHgs for now because they're not that awful to put on, and they help almost as much as the taller ones. If I can get SCDs covered by insurance, and use them while seated (with my feet up?), and they're helpful... I also use a weighted blanket covering as much of my body as I can. That seems to compress some of my body!
  5. In Boston... I have two referrals! Dr. Systrom (cardiologist), my doctor says, likes to run some really invasive tests... I hadn't heard of Dr. Farhad but he seems to be at Mass General and is a neurologist. Any experience with these doctors?
  6. I normally am okay with clot risk-I am determined to stay pretty active, so unless I'm immobile or otherwise at extra risk, I'm not on any treatment/preventative for clotting. I do think maybe the clot risk would get these covered. Just curious about at home use. I can't use them while seated? I do love putting my feet up. Good to know about the ACE wraps. Makes sense. Compression hose are just too exhausting to put on if they are tall enough and high enough pressure.
  7. One of my doctors, desperately trying to find a way to help, wants me to get sequential compression devices for my legs. These are the pumps that cycle inflation to avoid blood clots in your legs... usually used after surgery. It's a novel idea-I really can't get tight enough/tall enough compression stockings on, it's too exhausting, and it's not worth it to pass out in order to get them on! Another doctor said to try ACE wraps around my legs, too. Has anyone tried anything like these? The pump is quite expensive, and it does deflate, so I'm not sure how helpful it'll be. I found a study on the use of SCDs for hypotension during dialysis and also one for hypotension from spinal anesthesia. My one idea is to see if they'll be covered insurance due to my clotting disorders. If I get much worse, I'll be bedridden and at great risk for clots anyway. EECP is another interesting modality.
  8. So, one of my doctors felt so bad for me, and so worried, that he prescribed the DDAVP even though it's way outside his expertise. He wrote for 0.2mg twice daily, ouch! I tried 0.025mg last night to start with.... I think I felt a bit better afterwards, although my BP actually fell a little. I woke up with a headache but that's not that unusual. Today I'll try 0.05 and see how I do. The doctor told me to take it regularly, but all the studies I've read say that's not safe long term... I'm not sure when I should get my sodium rechecked-I don't have Thursday's results yet. I had tons of labs run.
  9. Welcome-there's plenty more like you, with inconclusive TTTs and few answers, but daily symptoms. Good luck and hang in there!
  10. 2:30-3am is my classic awakening time, too. It's terrible-too early to get up, but too close to 6am wake up time to get a decent 3 hours sleep beforehand ... I'm sure there's something behind this-it's too consistent time wise.
  11. I have sleep apnea which is well treated, but most of my problem is very light sleep and discomfort. It's either pain, noise, some stupid thing, etc. waking me up, and then I don't feel good enough to fall asleep again. If not for my beta blocker, I wouldn't sleep at all. My pounding heart alone would make sleep nearly impossible. I very rarely wake refreshed and I follow sleep hygiene to a T. I am in bed plenty of time to get "enough" sleep, but with all the awakenings, it doesn't add up to nearly enough. I suspect my sleep quality is crap too. I use Benadryl, melatonin, Valerian, theanine, magnesium threonate, etc. alternating with an extra half metoprolol (I can take an extra whole one by my Rx). They help somewhat... not always enough! Benadryl is most likely to get me to sleep when I feel extra bad.
  12. I wrote to both of you privately. I also waited more than a year to see Dr. Novak and have had a mediocre experience with him, although I do still see him. My biggest issue was when he did my SFN biopsies DURING my TTT and then wondered why it was inconclusive!! I was so scared and in pain.... I hate making a 90 minute trip to see him and spending 3 minutes in the exam room with no new ideas, I know we are frustrating by design, but that's not our fault!
  13. Yes, it varies, though. If I'm doing okay (BP generally above 95) I have really nice veins, maybe too distended if anything. The more shocky I am, the less they present themselves... not good!
  14. I definitely have longer lasting benefits the slower I run it. I was running 1L, now my standard order is 1500mL, and last time I was in such bad shape that we ran 2L (over 14 hours, partly overnight-the first 1L was run wide open to try and fix me quickly). I usually won't bother if I don't have at least 6 hours to run it. Much faster and the benefits are over too quickly. I get up to 36 hours of boost if I run it slowly enough. This last time, getting an IV was almost impossible because my veins were so empty. I can't imagine doing this for vanity... not that that'd work.... it's NOT fun! The stick, the uncomfortable dressings, dragging a pole around, having movement in that arm restricted the whole time...
  15. That sounds wonderful. Hmm. I think we have hydration clinics within within an hour of me, but very expensive and of course I'm much better off on my own couch running fluids for 7 hours...
  16. I have an EP and have had TTTs too. I suspect I have something in addition to dysautonomia, partly because I keep declining... and I don't fit any of the boxes. I'm treated as if I have straight dysautonomia but I really don't have a diagnosis, and some of what I have isn't explained by it...
  17. Last time I asked, I got denied for LR... but I'll try again! I literally will be grateful to get my NS Rx refilled... but I am pretty sure LR would help more. Especially times like now where I'm hardly eating. There's other stuff in LR that is helpful.
  18. 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...
  19. 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....
  20. 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...
  21. 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!
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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