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Everything posted by RecipeForDisaster

  1. I make my own nutrition shakes. I don't feel like drinking them lately but they are useful. I can live without fluids, but i may not be able to stand, walk, eat, sleep, etc. my BP can be in the 70s and I am not doing well in that range at all. A liter of fluids usually boosts me 10 points or so. I don't know if I'd die, but BPs that low are quite dangerous, I get all the symptoms of shock. FWIW, I started with 15mg of mestinon and worked up to 60mg 3 times daily. I was really afraid of it.
  2. I was 37, LOL. I have not been treated very thoroughly, had to work for every benefit I got, and had had to suck it up. I still don't have a diagnosis so that isn't now helping. I didn't get these issues until my 20s, at least not badly. I did pass out as a kid and may have considered the other symptoms normal. I have a hereditary tendency to too much clotting, and have a rotten immune system, so I don't want a PICC or port even though it would be much more convenient. I am glad to have ondansetron for nausea at times. Fluids help nausea a lot when it's from low BP in
  3. I think I wish I had that side effect these days. I would never seek chemicals to improve my mood, but this week my literal worst nightmare came true and I lost my young healthy horse who was my soul mate... then lots of other bad stuff has been raining on me and I am overwhelmed mentally and financially. It has been awful and I've already lost 4 percent of my weight. I could use a boost but I don't like the artificial kind. I want to fix my circumstances i don't recall any mental effects, good or bad, from mestinon. I DO notice that I am happier when I feel better (not the other
  4. My husband is a nurse, I get a new IV each time. So far I haven't been able to keep one working more than 8 hours. Normally they would send a nurse out. I could actually do it myself if I had an extra hand. It's not great but it's better than nothing! I am trying to keep my veins decent so only do the fluids up to 3 times weekly. i have no idea what is wrong with me-NO diagnosis!! Probably not POTS but dysautonomia. I have other stuff for sure, like positive ANA.
  5. I wouldn't say it's super helpful, but I don't have a lot that is! IV fluids, metoprolol, mestinon, and midodrine together get me up to "able to live" status. I can usually eat, get around, and sleep a couple of hours. If i feel I'm not up to eating so I can take my pills, I take a zofran and can usually manage.
  6. I've been lucky, surprisingly, I thought 60mg 3 times daily was going to be too high a dose, but it helps me without side effects to speak of. I hope your body adjusts... it has helped me to regulate my temperature and sweat where appropriate, in addition to avoiding presycope. I think I did have some runny nose/extra sweating at first but that is gone. If I miss a dose, I don't get worse than I was before Mestinon... there is no rebound so to speak. I just feel like I did before I started it. Hope this helps.
  7. All I can think of is pyridostigmine... it has helped me although I only have low BP and fast heart rate. It seems like it might be what you're looking for as it for as seem to affect BP or HR directly. It has made me stronger and I have less presyncope and fainting episodes on it. It even corrects, to some extent, my inability to sweat.
  8. I have had times when a liter didn't do much good but I didn't have the guts to add another whole one. I have run in another 500mL bag which helped enough but not to a great extent... I was lucky to get the orders and supplies for 1L! I'd love to try more, and it would be so great to get more than a couple of days' worth of improvement per IV stick... i run hypotensive, though. When I ran in that extra half liter, I hadn't really had any improvement in my BP after the liter.
  9. You may be thinking of me with the positive ANA, I didn't see the OP mention that. I am still homogeneous positive on the second test two months later. DNA was negative and I believe a full rheumatology panel was run with no answers. At least my c reactive protein and sed rate are not too high.
  10. I don't have any great wisdom for you but I can completely relate to that "there's something we are missing" feeling combined with "I know this doctor knows his stuff". I am sensitive to light and sometimes I do get weird twitches, but those aren't a big part of my issues. I had low iron and vitamin D and vitamin B12 myself. I was happy to find something fixable but in all honestly restoring those levels hasn't helped much I also have to say that I am, unfortunately, completely familiar with that "oh great, I have a solution, I'm getting better, this intervention is h
  11. That's funny, that's just about what I did today. Heating pad in a silver bubble wrap insulated envelope with the fluid bag... it helped but not nearly enough, I still got very chilled (and also the IV hurt a ton today for some reason) . The most helpful and least practical way I have found is to put a heating pad on my arm above the IV site and also run the tubing under it. It makes me immobile, though... I would love for the whole bag to be warm someday! i did 1500mL today over 3 hours. After a liter bag I just wasn't better enough and my BP was still low. The extra 500mL definitely hel
  12. That's the weird thing, I really don't get dehydrated. Just hypotensive and low volume, I guess. I love the idea of microwaving but yeah, I'm afraid of chemicals leaching. I do that too, at times I HAVE TO EAT NOW OMG and feel like I will starve to death... although not for a while now. Other times I can go a week or more without caring to or being able to eat. I'll be getting another bag today so hopefully that will make me feel like eating again. I love to eat! Eating always makes me feel worse, though. i don't take desmopressin-endocrinologist cleared me but that was years ago and
  13. Good luck, I'm pretty rural myself. Sometimes these companies partner with nursing agencies so that the IV company provides the fluids and supplies and the nurse comes out to do the work.
  14. Check into an arrangement like mine where you get a peripheral IV when needed, or you could leave it in and flush it for up to a week or so. If you don't have a nurse of your own, the infusion company sets you up... might be a good compromise. PICCS are another option, not for me due to clot/infection risk, but no surgery and easy use any time.
  15. So last week when I did the fluids it was magical. ... this time I think i was too far gone for it to help me as much. I would have liked to do a bag days earlier but didn't have them. My BP only came up 6mm (that isn't how I measure its usefulness, but it's interesting) and I did end up wanting to eat for the first time in 4-5 days, but I did not feel as improved as last time.. then, I think eating set me back somewhat. I think I needed more than a liter and wish I ran another bag in. I had trouble warming the bag enough so I got really cold too. Oh well! I'm looking forward to next time in a
  16. I don't have a lot of answers, but I'm in the same boat without a diagnosis. I'm on midodrine, mestinon, and metoprolol for whatever it is and even IV fluids now. It's kind of surreal. My hand and foot veins are almost always bulging and I'm not on florinef. It's weird because my BP is low and blood volume seems to be low too. i can't stand unhelpful doctors. I could have been benefiting from fluids years ago, but I was told "you don't need them if you can drink" and other untrue things like that.
  17. My PCP said he would order fluids at home when I needed them but I would have to come in first (each time). That obviously wouldn't work! One of my more aggressive doctors was willing to order them and I just tried my first bag a week ago (I had never even had them in an office or hospital ). I knew they would help but was surprised at all of the positive effects... I suddenly felt like I could eat, slept better than I ever do, was able to walk a lot further, was not nauseous, etc. etc. I was genuinely happier and I am usually pretty happy anyway even though I'm sick. I am lucky I
  18. Delivery is coming this morning, thank goodness, because I am really in need... haven't slept in days as I seem to be getting a cold, feeling horrible. It's such a relief that I will have this on hand... $360 copay or no! The local company, although owned by a big national company, came through quickly. Don't bother with Walgreens specialty/Alliance Rx..l when I asked the supervisor if being on hold for over an hour every time I called was normally she said "unfortunately yes" who can deal with that?? And useless information if you are lucky enough to get a person.
  19. I use it when I need it, too. The jitters and cold chills are bothersome and sometimes I get chest pressure. I have been avoiding 5mg but I should try 2.5 to see if it helps.
  20. Well I sure would not recommend that company! After about 14 total hours on hold (yes really) over 8 days, it turns out... they DON'T DO HYDRATION?!? Is there some special reason why no one could tell me that last week?! I'm starting with a local company that seems quick and caring. I have to get my husband's nursing skills signed off by them and then we should be set.
  21. Thanks! I have not done hydration anywhere but at home. I was sort of surprised at how helpful it was, although by the next night it had mostly worn off. Definitely worth it. I have no port, just new peripheral IVs to be placed each time. I doubt I'll do it as often as 3x week PRN as ordered just because of logistics. After a week and literally about 10 hours on hold total, I managed to get a supervisor by being left on hold when the place CLOSED. She felt so bad and is helping me, saying the orders are fine and they just need to run a test claim today. We'll see, if it's this painfu
  22. I'm surprised this has been so difficult to set up... my insurance set me up with Walgreens specialty/AllianceRx. It's been a week and no communication unless I initiate it, and no progress. First they said they'd call the doctor for the order, and they didn't.... then I had the doctor call THEM and they still say they don't have it. I have a paper copy but they can't accept a fax or email from a patient, so I have to send it from a doctors office tomorrow. I have good insurance. Does anyone have good experiences to report with getting these supplies (normal saline) sent to them? Any tip
  23. I did a liter of normal saline over about 3.5 hours. The idea was 4 hours for the first time, but I hadn't had to urinate at all after 800mL was in so figured I could speed it up a little, and it was fine. I hardly peed any out all day which is weird... If i drink 500mL of even electrolyte solution I pee most of it out quickly. I suspect that's part of my problem... whatever I drink, even if it's isotonic or hypertonic, it goes right out. As I suspected, IV fluids stick around, even though I don't understand why. Next time, I'll warm the bag more (I was hot when it started so I didn't feel lik
  24. I know... it doesn't help that the flu is widespread too. Both agencies haven't had this as a factor...the retail pharmacy doesn't deal with this, and the specialty pharmacy is just slow starting me as a patient. Inde they do I may have a problem with the shortage. I have a liter bag, my first, running right now... it was given to me. So far so good! I was sweaty and nauseous early this morning before getting stuck and those are gone. Yay!
  25. Thanks. The follow up testing is still positive (I think still homogeneous) but the DNA testing he sent out hasn't come back yet. I don't know a lot about this rheumatology stuff but I would welcome more education. I get a lot of colds and weird fast moving cellulitis if I get a tick bite, so I am not too excited about suppressing my immune system. My neck, back, and shoulders are really my achy all the time, but I wouldn't say my joints really hurt unless I injure them. I fall so often that it is hard to tell. The doctor is a hematologist but he has special interest in immunology,
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