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Everything posted by RecipeForDisaster

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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 helping!" And then 4 days later ending up back in the same spot ON the "miracle" med. It's a massive letdown and scary when you realize there isn't much more to add and this is your new baseline. i don't think midodrine has changed my heart rate for the worse, in fact, when I need it for hypotension, it brings my HR down a bit. I also take metoprolol and pyridostigmine in this realm and I am now getting IV fluids at home when things are bad. I hope we all find some missing link!
  7. 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 helped! I am better and grateful, planning to eat dinner. I'm hoping to get 48 hours out of it since I got 36 hours the last time a liter helped.
  8. 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 he no longer works... hmm... I'm not sure whether the heating pad did much... the first day, I ran the tubing over and under it, and I actually think that was more helpful than wrapping it to the bag. I'm still experimenting! My rechargeable heating pad is awesome.
  9. 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.
  10. 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.
  11. 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 way. I expect it will usually make a big difference. i did run it over just under two hours this time, so maybe running it that fast is less helpful? I don't know, I was twice as sick when i started this infusion as the last one, which I ran over 3:15. I guess I'll go in between next time. Amusingly, it says to set rate control to 250-500 and it only goes up to 250 so you have to eye it. i did not have to pee for many hours and it was not much, so I don't think I "lost" the fluids. Four bags of supplies and an IV pole in my kitchen... I'm going to make an insulated bag to hang the fluids in with a rechargeable heating pad. I would love any other warming tips.
  12. 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.
  13. 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 sort of knew what I needed before I even tried it. This doctor agreed I should have it on hand, partly because my BP drops so much (I don't think I hyper). I only had the one bag and it took a while to get set up with infusion services. I got my first delivery tonight and am just about to get my IV put in so I can feel better. It's been a rough week so I am very eager. I just use peripheral IVs each time which is not ideal, but I have a lot of risk factors against getting more permanent access. My veins are decent for now and I am going to try to keep it to 1-2 sticks per week. One of my cardiologists also told me I didn't need IV fluids when I could drink. That is just so stupid. There is a massive difference between drinking even 4L of electrolyte solution, which never helped me, and just 1 liter of NS right into my vascular system. I don't pee it right out, either, for some reason (I do when I drink it). I wish you luck in getting this arranged... it was a lot of work, plus $30 copay per bag, but very worth it! Maybe your doctor would be more comfortable without the idea of the port, even though that is convenient. The company I use would normally start a peripheral IV once a week and leave it in, but my body would clot if off abnormally quickly. I also have my own nurse
  14. 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.
  15. 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.
  16. 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.
  17. 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 painful going forward I will be switching companies. Most of the time I cannot get a hold of anyone and have to hang up after an HOUR on hold. Ridiculous.
  18. 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 tips or tricks? I'm also wondering about what kind of IV catheters they will send, plus the other supplies. I want to make sure there is no learning curve and there are so many different ones. To be honest, no one I have spoken to there (3 people so far) has sounded very knowledgeable or caring. I really want to have at least an emergency bag in the house, and I used the only one I had.
  19. 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 like it... later I was freezing) and I want to get a pole so I'm not as restricted. But, I do think we'll speed up the rate so it won't be as much time spent limited because of the line. I went for a walk afterwards and it was much less difficult on me than usual, my heart rate was better, and I haven't been as orthostatic. I even got hungry while the fluids were running! Good luck with the test... the closest place that offers it is pretty far, but I would like to do it.
  20. 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!
  21. 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, so I think he's extra good for whatever I have. My RBCs, HCT, etc. keep getting lower when they were always mid range before, but I am not destroying the cells. He doesn't think I'm making many of them. I have a few other clues like elevated WBCs and IG2. He has run about 50 lab tests and most were okay (including T cells... and HIV!). I have a lot more results pending to include mitochondrial testing.
  22. The hematologist believes it is meaningful and pointing to lupus because it's always been negative before... and homogeneous now. Hopefully it is just a blip, although I can't say that I wouldn't welcome some answers...
  23. Thanks... i still don't have the fluids or supplies. My retail pharmacy is not too caring and if they couldn't get the stuff, they wouldn't have told the doctor ordering it. I know this could be very helpful and might give me informal confirmation that I have low blood volume. Plus, it's pretty safe. Does anyone get these supplies mail ordered in the US? I had trouble finding a source but am calling my insurance today. I'm looking forward to having this tool for those "on the floor and can't sit up" days, and also before trying to hike, to see how helpful it is. I don't use ERs so I have never had this when I needed it. I bet my vasopressin is low as well.
  24. I have a wonderful rechargeable heating pad. I will tape that onto the bag. Thankfully my veins are pretty good so far! i believe this doctor will order the fluids as often as I need them. That's good to know about running them slowly...
  25. So my hematologist just ordered fluids at home. My husband is a nurse and will put the IVs in, right now up to 3 times weekly. I haven't tried this before and am curious to see how much it helps. If anyone has any tips for starting this therapy, I would appreciate it. I don't expect to use them that often and want to keep my veins useful. I know I plan to tape a heat pack on the fluids for now, to warm them a little. My ANA is homogeneous at 1:160 which hasn't given me a diagnosis but which the hematologist says "means" lupus. It was always negative before. My IG2 is high which he says indicates bacterial infection, but none that he has tested for (tickborne, etc.). My white count is a little high, my RBCs a little low along with my hematocrit and some other stuff. My low iron has been fixed for a year or two so I don't know why I am a little anemic. Does anyone have any experience with dysautonomia (without a diagnosis, I just keep coming up with "autonomic neuropathy" and "dysautonomia" in my charts) and lupus? I haven't heard of an association between them but there seem to be people here with both. I don't have a rheumatologist yet... just had some more specific testing done today. I'm not really sure what to think but this doctor promises he is not giving up on me until he gets answers. He is absolutely wonderful, and smart.
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