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RecipeForDisaster

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Everything posted by RecipeForDisaster

  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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 th
  6. 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
  7. 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 th
  8. 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 cent
  9. 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
  10. 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.
  11. 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!
  12. 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....
  13. 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....
  14. 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.
  15. 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.
  16. 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.
  17. 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. Ev
  18. 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.
  19. 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.
  20. 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....
  21. I'd say about 10 times, maybe every 8 months on average, starting when I was a teen? We always thought it would come up positive and never did. The last 3 times it has been.
  22. My ANA is 1:160 positive (I think speckled, or was if homozygous? Whichever one indicates lupus) and was never positive until this year... ESR/CRP are okay, rheumatoid factor normal, DNA test for lupus and mito normal, and so I'm told by my PCP and hematologist that it's not a big deal and I don't need follow up. I do have a lot of soreness, low temp, recurrent infections... I may push to see a rheumatologist but I doubt it'll get me anywhere.
  23. I've taken these for many years. Some symptoms did improve, my numbness and tingling most importantly. I use both sublingually. I'm quite sure I have MTHFR mutation but haven't been tested.
  24. Both of my cardiologists assured me that metoprolol, at least in small doses, isn't potent in lowering BP. Mine is very low to begin with and I haven't noticed a difference when I take it vs. when I don't. I use the 24 hour extended release version which doesn't last a full 24 hours for me. The different BBs have very different functions.. I am limited to specific ones so I don't have issues with my lungs.
  25. I can only handle half of a beer now. I'm a huge craft beer person so it's very disappointing. I used to be able to try 3-4 and now I have to split just one with my husband, which means we have to agree on which one to drink. First world problem, but still. i have horrible effects from more alcohol than that, even though I was well acclimated before. Getting hot and sweaty, nausea, very fast pounding heart, general illness waking me from sleep... nothing ever helped with it. ANY wine even homemade sulfite free stuff causes this, too. It's so unpleasant that it's not worthwhile to d
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