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Everything posted by RecipeForDisaster

  1. I'm outside a lot and I have a sunlight lamp for vitamin D (I supplement it too). I'm cold a lot, and keep the house at 60f. I will check out Jack Kruse. I feel better without the diltiazem, for better or worse. I still woke up hot and tachycardic at 3am, but metoprolol gave me a few hours of sleep before that, at least. I skipped magnesium just to see if it changed how metoprolol worked, but no.
  2. I'm going to ask about ivrabidine. Please tell me more about light! I do take 500mg magnesium nightly. What is the cold about?
  3. Interestingly, I normally take iron but I have missed a week or two lately because I am not eating much. I didn't take it when I was on the metoprolol. I don't take antacids but I do take magnesium at night, hmmm. That, vitamin D, folate, and B12 are my only vitamins. i have pretty bad asthma so they want me to be on a specific beta blocker that doesn't affect breathing as much. I also have low blood pressures, so I don't think we can really bump up the dose. It's okay to break metoprolol ER cleanly down the scored mark as it's actually divided there. If you crush it, t
  4. My doctor wants me to have the steady, extended effect of metoprolol, because I asked about the short acting twice a day. He said my heart could have issues with bouncing back and forth. That's really interesting about the metabolism research! I will ask about that-it honestly seems like it's gone after 3am (I take it at 6pm since it should be with a meal). I was also thinking of taking it right at bedtime without food so it would work for the entire night. It seems like if I took the long acting 12.5mg 3 times daily at a tiny dose it would work well, but it would "look" crazy. On the other ha
  5. I was prescribed metoprolol succinate 25mg ER and I found that it helped my pounding heart to lessen and therefore let me sleep. However, the effect wore off after about 8 hours even though it's a 24 hour formulation. Odd!! It didn't affect my heart rate or BP at all. My rate isn't always terrible, but even 90-100 and HARD while you're trying to sleep is too fast for comfort. I had no problems with the metoprolol other than the fact that it didn't last long. I slept much better than without it but never past 3am. Last night I didn't sleep at all and that's not too uncommon. Nothing helps me sl
  6. I love my cardiologist. My exercise stress test said while my BP was low, I'm in okay shape for being sedentary/unfit. That is not me. Desipte discomfort I continue to walk, hike, horseback ride, or kayak four or more times per week. My "usual" walk or hike is six to ten miles. I'm not always managing to finish that length anymore but I keep trying. My resting heart rate used to be under sixty. It hit one seventy in six minutes of walking. It was a hundred sitting quietly for an hour in his office. Sorry my numbers keys are not coming up! Because my resting rate was so low before I got sick, I
  7. I had the same PCP for 20 years and while he was still interested in practicing he would have done anything to help me. In the last few years he kind of checked out before retiring. I don't think my new PCP is like that at all but I will check with him about doing an active stand test. I haven't had any autonomic testing at all, just lots of bloodwork and ACTH stim. I haven't had a holter in many years, but I do have continuous heart rate data from my Fitbit. You can certainly see what time I wake up by my heart rate! i don't usually pass out from standing... that happens a couple
  8. I have this, too. I hope we can test for it and get it treated. I'm always getting out of bed for the day at 2, 3, or 4 am because I'm positive I won't get to sleep while those feelings are occurring. Melatonin, Benadryl, and valerian root separately haven't gotten me to sleep through them. This is one of my biggest issues. I'm not anxious and have great sleep hygiene and a CPAP. It's hard to get to sleep with the pounding heart in the first place and once it wakes me up, I'm done.
  9. Thanks for the link which did give me a few more leads. It sounds like a six month wait and having to "qualify" to get in with any of them, though. Yes, you are correct.... I hope I'm lucky enough to pass out? I'm sure everyone knows how your record low blood pressure is never documented because it was done manually out in the woods or in a store.... why can't that be at a medical office? Just luck.
  10. Unfortunately, not just because of my health, I won't be able to travel that far. I'm in New England. I started out with that list which is how I found Dr. Gibbons. Most of the other doctors I tried aren't taking new patients, only see kids, etc. Fortunately my insurance will let me see anyone without a referral, but I can't seem to find anyone. I hope this cardiologist I'm going to see surprises me with his knowledge or willingness to learn. Even if I can get in with Dr. Gibbons, I can't imagine living like this until June. I'm also a tiny bit afraid of the tilt table test because
  11. Thanks. I do take magnesium as well as vitamin D, B12, folate... Previously, I had very minor leaking of three heart valves, but it wasn't supposed to affect anything. My baseline blood pressure is now about 60-70 percent of my previous baseline. That's what I don't understand. But keeping in mind my fast heart rate and temperature regulation issues, I think this makes sense. I just can't seem to get care from a specialist and I don't think any of my doctors are well versed. To them, the idiopathic label and no treatment seems good enough.
  12. I called Dr. Christopher Gibbons' clinic in Boston and was told that I needed a doctor to submit documentation on my behalf to see whether the doctor will see me. Then I would be scheduled in June although I could have a tilt table test in December. My primary really dropped the ball with me because because he was retiring, and I've only seen my new primary, a PA, once. I'm not certain he's going to be a good fit. I've seen an endocrinologist once, as my new primary wanted me to, and he was pretty thorough although he cleared me as far as needing to see him again. I'm seeing a car
  13. Thank you! There are no specialists in my state and not many in the adjoining states. Do I sound like someone with some sort of autonomic dysfunction? I sure think so. It's good to know that not meeting the pulse increase at all times does no good rule me out. Sometimes I have a drop in blood pressure when standing and sometimes not.
  14. I am new here, but think I have had these issues for quite a few years. They sort of just seemed like "me" and I have been realizing more and more that "me" is not normal or healthy. I love to hike, horseback ride, and kayak but I have zero stamina or exercise tolerance. If I'm even stirring pancake batter and I don't take lots of rests, I start to "dim out" and will get a little nauseous and faint feeling. I'm not very orthostatic for the most part, sometimes 8-10mmHg difference from sitting to standing, sometimes no difference. The dimming also happens I feel I get up to answer the ph
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