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Everything posted by RecipeForDisaster

  1. I find that this is a good benchmark for how bad I feel, even if my BP isn't incredibly low. The smaller the pulse pressure, usually, the worse I'm doing. I haven't found doctors to be that interested in this either.
  2. For me, I have no port so I get a peripheral IV started each time. My husband is a nurse so he takes care of that. Once it's running, I am independent (only cause I can't start an IV on myself, although I am qualified and trained to... I'd need another hand) and run fluids as slowly as I can, making sure I'm done before I go to bed or have to go somewhere. I normally do 1500mL over about 7 hours. The slower I go, the more benefit I get. I could remove my own IV and can control the rate with dial a flow while it's running... getting around with a pole is a pain but it's doable. A v
  3. I tried to get help from an endocrinologist recently and she said there was nothing she could do for me. She repeated the ACTH stim that we knew would be normal... that is all. Every doctor is different, but mine wasted my time and money. I bet this drug would be helpful for me.
  4. This is wonderful. My experience has been very similar except for the port, hypertension, and seizures. I have my own version of this story-but I don't get fluids as often as I would need to to really feel better. I'm grateful for having them on hand and knowing I can get somewhat better anytime I get them. It was very surprising to me when I noticed my mood improving from the fluids-I was doing okay before, but was clearly happier after fluids. What a shame it is that people are denied this very effective, simple solution. Of course it won't work this well for everyone, but why no
  5. Oh yes, I can take anywhere from 0 to 50mg of metoprolol if I need to.... I always take 25mg at night but sometimes add in another 12.5mg.
  6. Midodrine is one drug you can take as needed, intermittently. Compression is something else you can add in when you need it. My cardiologist assured me that metoprolol really doesn't affect BP at these low doses. I have confirmed that is true with hourly logging, comparing days with and days without metoprolol. My BP is very low anyway so I wouldn't be able to afford it going lower.
  7. My beta blocker hasn't lowered my BP. Some don't as much as others do. I've never had a remotely high BP no matter what I've done, since the 90s. I wish I could tolerate 10mg- that's what my cardiologist recommended and I bet it'd be more helpful. I never want those feelings again, though! Glad we could help-this forum has been a big help so I am sure we are all happy to pass that along. Let us know how you do- I'm going to be surprised/impressed if it helps you a ton because your BP is so low like mine (I can get into the low 70s systolic) . I needed more than just mi
  8. I was afraid to try this for a long time until my cardiologist assured me that I could take a dose once in a while when I needed it, and it'd be fine. He was right. I take it when I'm doing worse or know I'll need to have an uneventful day, or will be exercising. If I am managing and won't be doing a whole lot, I skip it. So, you can take it once and never again, or take it regularly and stop. That made me comfortable enough to try it, and it does help me somewhat. It's out of your system within a few hours, so IMO definitely worth a try. I am complicated and persistently hypotensive, but
  9. Colomom, I'm on those forums too! Great advice. I have a CPAP and have had great difficulty dialing everything in-mostly mask fit but other issues too. I did like the airway splinting from the first night, and could see that this would help me. My sleep is still bad but I don't have the horrible events waking me often like I did before CPAP. For me, it was well worth persisting for years and trying more tweaks to get it right. The forums helped with this. With these modern machines, you basically have a sleep study every night you use them, which is pretty awesome. My
  10. I hope you find answers, and share them here... I don't really fit any diagnosis (about 10 doctors into this and have done every test imaginable, sometimes more than once) and just have chronically low BP after being HYPERtensive for many years. My BP doesn't change too much with position either. My heart rate also doesn't change very much, it's just fast 24/7 other than shooting up with activity(not standing) but now controlled by metoprolol. I do not function well at all and am basically in some degree of shock all the time, collapsing or passing out too often. Without meds I'd guess my BP w
  11. I have the rate-flow tubing, too. With a pump I wouldn't need an IV pole and could more easily go places in the car, etc. It's hard enough going up and down stairs, and I sure don't do errands or anything! I could also run it overnight if I had a pump-I could make sure it didn't run quickly enough to run dry before I got up. Rate-flow is good but it's not extremely accurate.
  12. Sometimes I really need the fluids but I don't have 6 hours to run it.... it's not worth it to run it quicker, for my body. It's hard with no pump and just an IV pole.... you're fairly limited.
  13. That's great! I wouldn't start with more than a liter-not everyone can handle it, plus it'll take you a long time to infuse if you go nice and slow, which so,e of us have fund beneficial. I had the same experience where the doctors who were knowledgeable in this area didn't want to order the fluids, but my hematologist was brave enough. Now that's it's obviously a huge help, one of the cardiologists said he'd take over prescribing. My original order was for a liter 3 times a week, but with my clotting, that's brutal on the veins. I do 1.5 liters when I need it-it could be every other week
  14. I don't understand it, but even tiny infections like a little cellulitis push me right over the edge. Yep, I need IV fluids too... at least it's an explanation for worsening symptoms sometimes, I guess! Better than the mystery kind.
  15. I have bad asthma so there are only a few BBs I could try-and I was afraid of even the specific ones. I have had good results with long acting metoprolol. It helps me to sleep because it reduces the intense pounding palpitations and fast HR. I do take it at night... it makes me more comfortable but I can't think of other benefits.
  16. I haven't tried LR but I suspect it would be helpful compared to NSS. I am grateful to have any IV orders at all, so I don't want to rock the boat. I don't get edema from NSS, though. I definitely find that slower infusions are more helpful. When I've had a time crunch or been very hypotensive, we've run the first liter in wide open, and I never seem to get as much benefit. I usually run 1500mL over 5-6 hours - I bet slower than that would be even better, but I don't have a pump so can't run it while sleeping, or in the car. If it were safe and doable for me, I sometimes fantasize
  17. I do better with 2.5mg midodrine taken more often , versus 5mg taken 3 times daily. I get chills as well as the tingly scalp, and if I take 10mg at a time as was first prescribed to me, I get this weird cold chest pressure that is very unpleasant. So if the side effects bother you, with your doctor's approval, you can try taking less.... I get a little boost in BP fairly soon, maybe in an hour? But, it's not dramatic.
  18. We are all different, but I'm already on midodrine, mestinon, and florinef (small dose because of major edema if I take more-salt or IV fluids don't cause edema ever for me). I'm prescribed 15gm salt with my tons of water daily! Plus, compression. Just to show you there is at least one other person in this boat. Maybe we have the same issue. I can't get my BP out of the low 70s some days. I feel better with all this, but obviously not good enough. I feel bad enough laying down but it's better than standing. I try to do the fluids as infrequently as possible for a lot of reasons... a liter and
  19. Also like me... my interventions boost my BP 5-10 points, usually. I was previously hypertensive so I don't feel okay until my BP is 115 or higher , usually.
  20. You are so much like me! I don't seem to fit in any mold except plain old hypotension. I do have cold hands and feet, heat/cold intolerance, and lack of sweating... but most of my symptoms can be attributed to shock itself. I have no idea why my BP is low-I seem to be hypovolemic, but why? I've had a lot of testing. My TTTs were inconclusive. Hang in there, this is a great group! I hope you can get some answers. Salt, water, and meds help but not enough. I will eat plain salt-I crave it so much. IV fluids are the most helpful but also least convenient and I am trying to save my veins, since I
  21. I've found the same exact thing-I can drink perfectly isotonic solution and pee just about all of it out quickly. When I get it IV, I hardly urinate at all. It's so weird. The kidney should see "extra" fluid the same way whether oral or IV... but it doesn't seem to with us!
  22. Yep, in my case I seem to be low blood volume and I only have very low BP, never high. My orders are for 1000mL up to 3 times weekly. I have it done at home and do try to do it as infrequently as possible to save my veins. I don't have any permanent access.
  23. I had a very hard time getting to try this and to keep getting it prescribed. Doctors often say "if you can drink, you don't need IV fluids". By hearing from all of us who have gotten good results from IVs, it's not true in every case. I think it's the fact that you are forcing all of the fluid right into your vessels, because if you aren't dehydrated, why would your GI tract hold onto much more water that you drink? Plus, yes, the pressure being forced up. I don't think i have EDS so I can't speak to that. Good luck, I know exacly how you feel wanting to try this and having so mu
  24. I have these and bigeminy and neither of my cardiologists is concerned. They do bother me, and are worse if I take extra metoprolol. I think that's because of the rate going too low for me, like low 60s, but I'm not sure. I don't take in more than a half cup of caffeinated coffee to avoid them getting worse, and IV saline seems to help.
  25. Hope I can help here-I have had similar symptoms and inability to sleep due to pounding/tachycardia is on of my worst symptoms. I have bad asthma AND pretty bad hypotension, never hypertension anymore although I had it 20 years ago. When I go to bed, my BP is usually in the high 70s or low 80s. I was very afraid of metoprolol but it has made a big difference in my ability to sleep. It takes the edge off the pounding and lowers the rate somewhat. My cardiologists say it's unlikely to lower BP at all at low doses (I can take up to 50mg per day but usually 25mg). You could take a non
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