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Everything posted by RecipeForDisaster

  1. 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!
  2. 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.
  3. 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 much trouble getting it arranged.
  4. 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.
  5. 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 long acting version to try it out, because it would leave your system quickly. I take the 24 hour extended release which doesn't even last half as long for me, but it's usually enough. I can deal with the pounding and tachycardia much better when I'm not also trying to sleep. When I have to be off this drug for a test or something, I really don't sleep that night. I did hourly BP checks with and without each drug I've been prescribed. I found absolutely no difference with or without metoprolol, thankfully. It made no sense to take a "BP lowering" drug when I am hypotensive, but apparently it is not a good antihypertensive, I'm told. At least not at these doses. It also never affected my breathing. We picked this one for the selectivity-there are only a few that are this selective and less likely to affect breathing. Good luck!
  6. Ugh, thanks, he wasn't too helpful! I wonder if that's true, I sort of doubt it. I know I don't have pheo, I was tested for it years ago when I had unexplained hyPERtension and now I can't keep my BP up at all.
  7. That's wonderful, I'm so happy for you. I know just having bags available is a major confidence booster. I know I will be able to get better at home!
  8. Same with me, i had to work to get my primary to order these tests. Good luck, I'm eager to hear what the nephrologist tells you... for me I really doubt my kidneys are the problem (compared to some chemical telling them to misbehave) , but who knows! My cortisol was okay but my ACTH stim was done at 4pm and required multiple IV sticks. I guess that time of day is not right for a true test, and I hope that if I have to do it again, they'll put an IV in this time.
  9. I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.
  10. I use an APAP for sleep apnea myself and it took years to optimize my therapy. I'd say I've tried 15 masks and different liners and stuff too. I wouldn't be without it now. I didn't see any mention of automatic titration, where your machine stays within a range and doesn't hit that 24 unless it's needed that night? It could help... I'm on another forum, CPAPtalk, that has been really helpful. There are lots of tricks shared there. Good luck-I hope you can make the machine work for you since it clearly seems to be needed! IMO, if you need that high a pressure, it's very important that you consistently use the machine.
  11. I can't have a port or a PICC but for most people, those are the best answers. If things got really bad, maybe a port someday, but the risk outweighs the benefit right now. The port can stay accessed for days if that's better, just so you know. Literally knowing I can get almost instant BP elevation that always works and gets me out of trouble is major peace of mind. I fought hard for it! I used to resign myself to 5 day stretches of not eating, barely being able to get off the floor, crumpling, passing out... thank goodness I never have it let it get that bad now. I do have to wait for my husband (RN) to get home from work sometimes but I find I can usually make it. If I'm getting bad I usually do fluids early.
  12. I'm written for 1500mL 3 times per week or as needed. Sometimes we try to leave the access in and do two days in a row. No one minds if I do it daily or every two weeks, so I decide based on how bad I'm feeling and if I can actually be hooked up for a few hours. If I know I will be having a rough patch, need to be at my best, or have been unstable, I'll do fluids anyway... and I did them on a schedule at first, for a few months. I definitely did better, but between logistics and wanting or save my veins (plus $30 a pop copay) I decided to save it for when I really need it. Just knowing it's there is very nice. Will you have someone come to access the port, say, weekly? I'm happy for you, having this option at home!
  13. I couldn't try propranolol due to my lungs, but I haven't had any of the side effects you mention with metoprolol succinate other than a little sleepiness-I take my routine dose at night so it's welcome. I'm only on 25mg which does take the edge off the tachycardia without lowering my BP any further. If I take another half tablet at another time of day (I'm prescribed to take up to 50mg daily as it does not last 24 hours for me, and if I'm not doing well my heart rate can still run high), I have more PVCs which is bothersome. Otherwise, I'd take another half tablet more often. Just my two cents-it has been very helpful to me. It has lessened the booming palpitations which lets me sleep a lot better (not well but better!). Hope this helps.
  14. I hate to tell you I had a horrendous experience with Walgreens. I use a local provider of BioScrip which might be available to you in your area. They have their own nursing but I don't use them. Usually, if you call a local infusion company, and they can't take your insurance, they'll find you someone who can. Or, you can ask your insurance company for help. I actually work in this industry but not for the company I use for my own infusions I think you're better off with a nearby branch of a national company, or a totally local one. Good luck! It wasn't fun setting mine up, but we are good now,
  15. I trust you guys and my primary isn't actually arranging the urine collection test as the neurologist asked him to anyway, so I won't go through the bother of the test! My renin is high, and I've been on licorice and then florinef for a while as well as salt and fluids. I sure don't want an artificial normal result! I guess I won't get my blood volume measured. I'd be willing to go to Yale for Daxor, but most of my doctors say it isn't worth doing. I think they are pretty sure I have it and there's not much specific treatment anyway.... especially treatment that I'm not doing.
  16. Interesting... it was a well known autonomic neurologist who ordered the 24 hour urine electrolyte measurement to estimate blood volume. I would think that would be extremely variable considering your electrolyte levels fluctuate!
  17. I'm supposed to have testing done using 24 hours worth of urine electrolytes to estimate blood volume... my PCP is supposed to get it done so I don't have to actually do the test in Boston, but I haven't heard anything about getting it done-and in the meantime they started me on licorice and then florinef, so I don't want to bother if the test will be skewed. i am nearly positive my blood volume is low and most of my doctors don't think it's worth testing for, partly because there's not a specific treatment for it. I kind of AM being treated for it, florinef, IV saline....
  18. My doctors are often skeptical that even 20+ tubes of blood can cause a problem.... once one said that isn't even half a blood donation. I asked if I should be donating even half a donation of blood with my BP in the 70s.... duh! I was just thinking physiology and how often the body loses and replenishes small amounts of blood without us even realizing it sometimes....
  19. Personally, I wouldn't think that amount would really affect you, but I have had significant issues with having more than 20 vials drawn at a time (yes it IS a lot of blood). I have collapsed trying to get back to the car and also fainted in the lab right after the band aid went on, which has never had anything to do with the needle. I'm not needle phobic and IVs or injections don't do this. Lately when I get a lot of blood drawn I get IV fluids right after and I'm good. I don't think doctors realize how many different tubes are required for all those tests... it can add up.
  20. Many of us lack intrinsic factor which is but needed by the stomach to process oral B12 or B12 in food. My great grandfather died of pernicious anemia but I don't have it per se. Other meds and supplements can also make it hard to absorb in the stomach. That's why sublingual is a much better bet. I'm told by several doctors it's as good as injectable, if you use it correctly.
  21. It may make you a little tired. Mine wears off as time goes on, sometimes after as little as 6 hours. The most important thing mine does is lessen the pounding so I can sleep easier, but it helps during the day too.
  22. I was very scared to take metoprolol myself. I started with 12.5mg very carefully. I use it for awful pounding palpitations and fast heart rate. It absolutely helps. Without it I sleep very little if at all. Both of my cardiologists say that metoprolol is a "lousy anti hypertensive " at lower doses. I can take up to 50mg daily if I need it, but I almost never do. My BP can run in the 70-80s and I still take it because there's very little effect. I do think lowering my fast heart rate does help my BP come up. My resting rate is back to the 60s-70s where it used to be. Even sitting here with a rate in the 90s or higher felt uncomfortable to me.
  23. That's the one I take, I need steady metoprolol in my system for as long as possible. I take it at bed time. I don't find that it works for the whole 24 hours but I can split it and take it every 12 hours per my cardiologists. I usually don't, because I need it at night more than any other time. Pharmacists tell me this particular form is okay to split along the score line, but not anywhere else nor can it be crushed.
  24. Any form of cyanocobalamin made my deficiency symptoms much, much worse-intolerable. IM or intranasal was the worst. I tolerate 5,000mcg sublingual methylcobalamin just fine.
  25. Interesting... I've been toying with a second opinion from an endocrinologist but I might also ask my hematologist to run that test. I'm certain my ANA wouldn't just start being positive every time for no reason at all. As you said, if it's not a big deal, why test? I know some people "just have a positive ANA" but when you used to be consistently negative....
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