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Everything posted by RecipeForDisaster

  1. Thanks so much to all of you-your work and the forum make life with these illnesses more bearable.
  2. 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.
  3. 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.
  4. 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....
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. Oh yes exercise is very helpful. I have several doctors who have said they'd love to try clonidine, but my hypotension precludes it.
  12. 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.
  13. 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.
  14. I see him. I have other recommendations as well, sent to the above two posters.
  15. 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.
  16. 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.
  17. 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 this, which are from adderall, and maybe some are just me getting worse or having a bad spell like I think I'm starting now.
  18. 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.
  19. 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.
  20. 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 around!). Not having to stick to an IV pole for 7 hours a day is glorious, but I'm still grateful to have them on hand. I didn't have high hopes for Adderall... I saw it as a last ditch, desperate kind of thing. I wasn't sure I was willing to try it, but am so glad I did. Soon I'll start LDN and maybe I won't even need Adderall anymore!
  21. I'm still having worsened palpitations on Adderall but also much better energy. My sleep isn't worsened by it, but then I take my tiny dose around 5am. The last few nights, other things have been keeping me awake (wind, pain) and I don't feel like a zombie despite lousy sleep. That's great in itself... usually I'm ruined by a bad night of sleep. I'm not on Facebook, drat. I've been reading about LDN a lot and the nightmares or sleep issues would be a real problem for me. I hope I don't get them! I'm also trying to figure out the best way to mix/store it since I am diluting the big tablets myself. I have a year's supply! This doctor is wonderful and smart-he actually recommends this forum. The only problem is, he's really busy with a small staff so they do not do a good job on follow up/returning phone calls/making things happen. That's frustrating. I'm not sure he will actually do the Mayo panel-he wants someone else to order it, and I don't think they will. For some reason, I don't think my neurologist is interested in this. But, it's been years of not having a good doctor and feeling very uncared about. I do have a newly positive ANA and this doctor thinks something autoimmune is definitely going on. Other doctors don't really think so. Also, most of them don't think MTHFR is a big deal, but I know it means precautions need to be taken. I ordered a high dose methylfolate supplement, because I already take methylcobalamin which saved me from B12 deficiency. He didn't have any recommendations for the tracheomalacia other than see a pulmonologist I have way too many doctors already... and I don't think that one is really a big deal right now, especially since I always use a CPAP anyway.
  22. I'm feeling similarly over-optimistic on my tiny dose of Adderall. I was asking my husband what I'd do with my extra IV fluids if I never needed them again.... I mean, I can take twice the dose of Adderall if I need to! I know that's a crazy thing to think about after 2 days on it... but maybe LDN will also help and I really won't need fluids anymore!
  23. I'm so glad you are proving us right. If just a few thousand more doctors are convinced, we'll be in good shape! I'm so happy it's been so helpful. I know that if I could get my fluids more often, I'd have a much better and more normal life.
  24. Thanks-I think I'll keep taking the tiny morning dose and see how I do. Did you have worse palpitations and chest discomfort from it? If those go away, it'll be a total win. If not, I think it will go in my bag of tricks to use when I'm doing worse, or need to be super useful... not every day. I do think I had an easier time exercising, and Al's of not blacking out when I stood up today. I was definitely more sharp and alert (and awake even though I woke up at 3am) . I don't have ADD so I'm lucky I got it to go through insurance.
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