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Everything posted by RecipeForDisaster

  1. My arms are quite thin... luckily we can both do a manual reading. I usually don't do my own because I don't believe the reading, but when I do and have my husband (a nurse) check it, it's very accurate. It's not easy to do it correctly because of propping the arm up correctly.
  2. My legs get insanely itchy, and mottled gray, when I walk sometimes. It must be a blood flow issue but no one has seemed interested.
  3. Ditto here-no BP machine even in clinical settings has been accurate for me for a while. I'd love to have the auto recording of a machine but all of my measurements have to be manual if I want a true result.
  4. I was extremely hesitant to start any meds at all, particularly any I had to take daily. I'd be sunk without them so little by little I accepted them. It goes against my grain but is clearly needed.
  5. I take a bunch of my meds daily including the beta blocker, florinef, etc. I take a starting dose of midodrine and mestinon each morning and add more doses if I need them. I can take several more doses of each if it's not a great day. I also add doses if I need to be doing particularly well to get through an activity or just make sure I don't collapse. I don't do well any day, but some days are worse than others so I need the extra meds available on top of the baseline ones. We are all so different and many can just take meds as they need them.
  6. Repeat explanation of why this would help and a request just to let me see if it helped. All of my doctors were unwilling to prescribe it until my kind hematologist said "okay". That was after I suffered through a week of mostly being on the floor, blacking out and not being able to eat or walk. He knew there was nothing else that could be done for me and he has a heart. One cardiologist said the same, "if you can drink you don't need IV fluids". Now that he has heard of how helpful the fluids were, he's willing to take over prescribing. Aggravating!! It took me months of hard work to be able to try it.
  7. My tablets are 60mg and scored both ways, so I started with 15mg. I'm glad you didn't have issues starting with 90mg! I have better exercise tolerance and temperature regulation on it, but it's not dramatic. definitely ask your pharmacist about the interaction. I tried a supplement that had rhodiola and didn't have much effect, but maybe you will.
  8. 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.
  9. 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 visiting nurse would usually just get you started and you'd either disconnect and flush your IV after, or remove it. It'd be unusual for them to stay the whole time, but then again the "normal" rate for this is 250-333mL per hour so it wouldn't take that long.
  10. 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.
  11. 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 not try if you're doing that poorly? The amount of work we have to do to convince doctors to give us access to fluids is not fair.
  12. 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.
  13. 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.
  14. 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 midodrine and I'm still low.
  15. 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 midodrine does tend to help me function and exercise a little more than I could without it. You aren't supposed to lay down within 3 hours of the dose because of the risk of supine hypertension-that is not a risk for me, after thoroughly testing (my lying BPs are still low, even on midodrine). I certainly have fatigue, but little hope of alleviating that-it's presyncope and collapse that I need help with most. I have 10mg tablets which is far too much for me. I do best on 2.5mg every couple of hours. On 5mg I get chills and tingly/cold scalp. The chills keep me from taking that much unless I truly need it all at once. At 10mg I get really intense, cold chest pressure that is unpleasant enough that I don't go that high for any reason. It's nice that you can break the tablets. Good luck.
  16. 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 sleep apnea is gone with this therapy-I average less than 1 event per hour while on the machine, and my pressure is only at 6. It's silent and the exhalation relief makes it pretty comfortable. My asthma has improved a ton since I started using this-side benefit! I hoped this would be a magic bullet that'd fix all of my problems, but it still definitely benefits my life.
  17. 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 would be about 70/30 now. I'm on midodrine, mestinon, florinef, 15gm salt per day, 4L water (usually consumed as a homemade oral rehydration drink) and IV fluids and generally run near 84/60 on all of that. In my teens I was 150/90 and really nothing in my life has changed. My diet, weight, environment are the same. I was very active in many athletic activities but still keep trying to do so. Good luck!
  18. 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.
  19. 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.
  20. 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 or every day. I charted hourly BPs.
  21. 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.
  22. 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.
  23. 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 about a slow, continuous drip on a pump-I just know I could do everything I used to do without much trouble, and I'd feel so much better.
  24. 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.
  25. 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 a half only gets me 36-48 hours of doing better, so if I wanted to be at my best all the time, I'd have to have many IV sticks which is not so good for the veins, $30 per day of fluids, and be connected to a pole for 5 or more hours every other day... some people do keep a peripheral IV in for the whole week, but I have clotting issues and can't keep it good overnight. I don't know what can cause problems like this, but I'm seeing an endocrinologist next week. I have 2 cardiologists, a neurologist, a hematologist.... No one really knows what else to do with me. Other than my leg temperature and color, paleness, and wobbliness, I look surprisingly good for my BP and still try exercising and working. I feel rotten but still do just about everything. Sometimes I pass out, but my life is still good overall. Hang in there, hope this helps, and know that it's possible to manage even despite all this!
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