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About RecipeForDisaster

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  1. Thanks! I already have terrible palpitations but I am hypotensive.
  2. Did you guys know there is a discount card? I am working on that... cardiologist says to just start at 5mg twice a day. This is replacing metoprolol so I thought I had slowly taper down. Hmmm. I was hoping to eventually be on a little of both, since metoprolol helped my pounding heart so much. I have seen other people on both. Does anyone else have experiences to share?
  3. I think it helps, but it ruins the tiny ability to eat that I still have, so it’s not worth it.
  4. My BP is so low and I also need metoprolol... I did not do well on diltiazem alone. We’ll see! I am starting on 30mg too.
  5. I’m scheduled for a diltiazem trial (for cerebral perfusion) along with my beta blocker (I don’t know if that has made them worse, but it hasn’t helped... it has helped enough other stuff, though!). Maybe it will help with this, too!
  6. Our family never gets thirsty and never had water on the table with meals either. None of us can tolerate heat well, either! Hmm.
  7. I have awful sleep, sleep apnea (CPAP has helped but not nearly enough), and cerebral hypoperfusion on Doppler. Lots of other crap too, but sleep is one of my worst problems and also gives me a horribly miserable and sick day afterwards if I get less than 6 hours or so. That’s pretty rare. IV fluids help with this too. I think I’ll do it tomorrow.
  8. I really doubt it - mine was over 3L and I definitely have low blood volume. I agree on the salt and fluid intake... mine were high that day as usual. I have trouble keeping my blood sodium high enough, which is so weird on 15gm salt daily.
  9. Same for me, I have a ton, and the electrophysiologist gave me options to treat with antiarrhythmics, ablation, or nothing. I am such a mess that I’m going with nothing for now. They bother me (I have a lot of bigeminy) but he said they are okay. I WOULD love to know where they’re coming from. Heck I’m only 40.
  10. Lots of seemingly unrelated ones! I am hoping there’s a link. Many are not diagnosed officially. If they were, I’d say 8-10?
  11. Interesting! This and alpha lipoic acid have made my nighttime neuropathy flares tolerable. I don’t think it’s helped the rest of me, and I used to take it in the morning. I wonder if I need higher doses. It’s been pretty magical for no longer waking up with foot pain, though.
  12. I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier! If I remember right, you’re seeing people in Boston? Feel free to PM me about that.
  13. My IL 10 is about double the upper limit, and my growth hormone is low for my gender and age. Just curious if anyone else has had these. My neurologist ordered the tests but of course he says "my labs are fine". Why order them if you’re going to brush off abnormal results? I think he does it for studies he runs.
  14. Yeah, that happens a lot. This guy used to have great staff. I have several doctors with awful gatekeeper staff that don’t pass on messages and don’t let you talk with the doctors.
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