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Everything posted by RecipeForDisaster

  1. It has made a big difference in my ability to sleep. My HR doesn’t go much below 55 on it, which seems to be fine. I was athletic enough that it was around there before I got sicker.
  2. I’ve been helped quite a bit by metoprolol. I started with 12.5mg at bedtime and I sometimes take up to 50mg at bedtime now.
  3. It’s actually been very helpful for my low BP and fluid volume. You just have to be really careful not to drink too much unsalted water. I wouldn’t think it could increase other med' s activity on its own, but the brain changes could certainly make you feel weird. I just feel off, get a headache, and nausea if I’m starting to get hyponatremic.
  4. I use DDAVP and all I can think of is sodium depletion. That could make you drowsy. Mine is a different formulation, and I take it during the day to raise my BP, but I have gotten close to that when taking doses near the max I’m allowed.
  5. I feel totally abandoned and have fallen through the cracks even without being cleared by about 6 of them - I’m actively seeing them. However, I have had specialists clear me very prematurely without trying to help, from the first visit: rheumatology, endocrinology, etc. my issues have only continued to worsen. I feel for you!
  6. It needs to be regular licorice root, not DGL: De-glycyrrhizinated licorice (DGL) has been manufactured to avoid the side effects of licorice by removing the active compound glycyrrhizin . that can increase BP and fluid retention, so healthy people don’t want to take that component, but it’s important for us.
  7. My whole spine is bad. I looked at my still slightly painful heel when I got up this morning and it was red and hot. I’d like to get a photo when it’s really raging, which is when I’m half asleep and it’s totally dark.
  8. This really sounds like me!!! I hope there’s something that can be done about it. My ears definitely do this at night, too.
  9. Sigh. I cannot get a hold of the doctor promised he’ll write my IV fluids (since my other doctor got fired by the hospital). I have 2 emails and 4 calls in over the past month. None have been returned. I think they’re actually closed because of COVID. Their office is awful but he is wonderful. I have ONE day of therapy left and I’m saving it for a really bad time. It sucks!! One new doctor I have agrees I need the fluids but "we don’t prescribe them". Most of my others also refuse as a rule. I have unreturned phone calls to 2 others just in case. I’ve had PPs of 8 before.
  10. I wish someone would care about my pulse pressure or really anything else it drops further when I stand or even sit up. I can get PPs near 10 and it correlates well with how badly I feel. The licorice has definitely increased my volume a bit, as does DDAVP.
  11. I get this in any "small" body part touching the mattress - ear, elbow, heel, etc. I haven’t gotten any help with it and my doctors don’t seem interested. The pain wakes me often. I am wearing pillows wrapped around my feet... it helps them for now. Please update me if you get it figured out!
  12. I portion out 15gm salt which is my daily "prescription" and eat it throughout the day. I crave it so badly that I’ll just crunch on it... but I put it in water, make broth, put it on all foods including chocolate or ice cream, etc. It's never difficult for me to take in enough!
  13. I am currently searching for a PCP in R.I., so not too far away. I’m asking my specialists if they know anyone they’d recommend. Please share if you find someone! I think my PCP believes in it, but he is patronizing and just wants me to get used to everything. He also blames ridiculous stuff on my meds when it’s not possible (as in I was losing weight well before I started adderall, and now I take 2.5mg once weekly when I need it, down from daily, partly to make him shut up and partly because it's expensive. Come on!!!). Good luck! I know how frustrating it is.
  14. Yep, this is one of the most major discomforts for me, and it keeps me from sleeping. I keep needing increased doses of metoprolol to blunt it. IV fluids help it a lot, too, but not much else does.
  15. I have decent results from licorice, too. It’s almost as helpful as florinef was, but without the edema and migraines I got with florinef.
  16. I should add that I take in 15gm salt daily. I want to eat it plain! I am trying to avoid taking DDAVP every day - I just use it when I’m in really bad shape or I need to have a decent day.
  17. I use taurine, and I find it helpful although I haven’t pushed the dose yet. It sure hasn’t lowered BP for me - that would be bad. My mom found it a life changer!! She was going crazy from high HR and palpitations, PVCs, etc. and couldn’t tolerate a beta blocker or calcium channel blocker. She is thrilled with this stuff.
  18. I had a very hard time getting desmopressin - but it makes a much bigger difference for me than fludrocortisone did, and the best part is, I can take it as needed instead of having it built up in my system. The side effects are less with desmopressin, too. If I take too much (I have a script for 0.2mg twice a day, which I’ve never gotten up to) I get headaches and weird feelings, but it helps my BP and gives a nice boost. I wouldn’t call it a life changer, but it’s about 1/3 as effective as a liter of IV fluids. It’s great to have in a pinch. I didn’t have great benefits from fludr
  19. Maybe you could start licorice as you reduce florinef? That’s how I did it. With MD approval, of course.
  20. I had a similar experience with florinef and switched over to licorice root. It doesn’t help quite as much, but I don’t have the edema or frequent migraines, either. My doctors all endorse it for me, surprisingly. See what yours say?
  21. They are not similar types of medications. The first is heart related, the others are two difference kinds of asthma medications.
  22. I just got lab orders to measure ACE, along with a ton of other stuff, from a new doctor. Interesting!
  23. I have very bad asthma and do fine with metoprolol... your mileage may vary, but it helps me quite a bit.
  24. I use tiny doses often to try and keep my BP up. I don’t take it before bed... if I was doing okay, I wouldn’t take it. For me, 5mg or more comes with a lot more side effects, so I take 2.5mg every couple of hours. I’m prescribed 60mg daily.
  25. I wish I had some magic words for you, but I have this situation with many of my highly respected physicians. I had an appt last week where I was told the doctor "can’t prescribe my DDAVP or fluids because there isn’t enough data and besides drinking fluids is exactly the same". I tried to reason with him, showing my records of awful BPs and how the fluids fix everything and nothing else does... it’s a huge bummer. The kind doctor who prescribed these things for me is no longer seeing patients, so I’m in trouble, not being able to find anyone to take them over so far. My theory is
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