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Everything posted by RecipeForDisaster

  1. I actually had that test done last April. It was high normal. I have a lab slip to get it checked again, thanks to my thorough hematologist, but it also has iron tests that I can’t do for 4 weeks. I would get the labs drawn twice (18 tests) or see about splitting it up, if I thought it was foolproof. From what I read, this is pretty hard to diagnose, and I am hoping I don’t need a myocardial biopsy.
  2. I may have one of these. Unfortunately, the cardiologist who ordered the testing is the slowest, least responsive or reachable guy I have. I have every symptom of sarcoidosis including, of course, dysautonomia. I also have neuropathy for unknown reasons. I hope I don’t have this, but if I do, I’d like to know ASAP and get it treated. This was found on a cardiac MRI, which I need to redo, but it hasn’t been ordered. I don’t see the guy until mid December. He does sound worried, but then doesn’t answer follow up questions or move forward. They are redoing a 30 day EKG (I’ve done it twice, no arrhythmia other than PVCs and bigeminy which are now treated) because they are thinking I pass out because of arrhythmia. My heart rate is never irregular or super fast when I pass out… we are confident it’s not that. But yay, I get to wrestle with adhesive sensitivity for another month.
  3. Can you help to explain why many of us get longer/better benefits from running IV fluids very slowly versus a "normal" rate of 125-250mL per hour?
  4. You can try to plump up your veins with warm packs beforehand. I’m going to do that for my iron infusions because I don’t seem to bring my veins to those.
  5. I had a cardiac MRI on Thursday - they are just trying to figure out what’s wrong with me, I don’t know of anything they had in mind to look for. I was surprised that this came up - I don’t think I fit myocarditis but I don’t want to shrug it off, since I am doing so poorly and myocarditis can present in a subtle way. I was just curious whether anyone has had findings like these. ——— 3. Late gadolinium enhancement: There appears to be faint subepicardial enhancement in the basal inferolateral segment. This is not definite and is a common place for artifact, but is very suggestive. If real, this is nonspecific that is typically seen in the setting of age-indeterminate myocarditis. Consider a 6 month follow-up examination to assess evolution. LATE ENHANCEMENT (fibrosis/granuloma/infarct): There is no evidence of myocardial infarction. There appears to be faint subepicardial enhancement in the basal inferolateral segment, series 100 image 4, series 103 image 3, and series 69 images 6 & 7.
  6. Many times… my most dreaded places are the rare times I’m somewhere without my nurse husband, and in public. On pavement at a class or exposition… more than once! It doesn’t even have to be hot, although it makes this more likely. I also passed out in the car not too long ago, and I was upset because I couldn’t put my feet up or lay as flat as I wanted. My husband was driving and I felt like I just couldn’t get the care I needed because we were in the car.
  7. I use a homemade transdermal vagal stimulator based on a TENS machine. I find it somewhat helpful for my HR, but it definitely doesn’t take the place of my meds. I’d love to learn about these, though, because if they’re helpful, they’d be money well spent.
  8. Yeah, I don’t think ISA is good for me at night. He has me taking it twice a day - I definitely need the help with HR and pounding most at night. It seems ideal to take this in the morning and metoprolol at night, but I bet they won’t let me do that. I do think I feel better during the day, with a bit more energy and exercise tolerance. My BP hasn’t changed(but it didn’t with metoprolol either). I want this to work! I hate going back to doctors saying I can’t use something, and I like the daytime effects.
  9. Took my first dose last night and was up all night. I felt like I had some caffeine before bed. It did help with my rate and pounding, but like you said, I can feel terrible "heart wise" with a rate of 76. Neither it nor metoprolol changed my blood pressure. Today will be the first daytime test and I’m going for a walk. Sorry about your blood sugars - my fasting is always 102-106, and while I knew beta blockers can raise it, I guess I didn’t think I’d have that.
  10. That’s what I figured. He is excited that I could do better on acebutolol (I’m not doing well, as far as low BP, orthostasis, syncope...) but I doubt it. Metoprolol has not bothered my lungs and has controlled my HR nicely, most of the time. I would love to know what made it your favorite beta blocker! I am definitely considering whether it’s worth a trial.
  11. Thanks ! I’m doing pretty well on metoprolol... he thinks this might be better. I knew about the ISA - neat? It helped you more than others?
  12. I have found it more helpful for palpitations and pounding heartbeat than for the rate itself. A beta blocker helps more with that. I still take taurine, because my palpitations are bothersome.
  13. My newest cardiologist wanted me to try ivabradine, although metoprolol is doing fine for me - I had no idea it would be so expensive even with the drug discount card and partial insurance coverage. That’s a no go. He then suggested acebutolol, saying he had success in other patients. I have pretty bad asthma if it’s triggered. Has anyone used this one? I’m not sure how specific it is.
  14. For now, I put frozen sponges in my bra... but my mom got a cool recirculating ice vest that I will buy if she ends up liking it. I use those cooling cloth items, which help a tiny bit as well. But I also usually crash if I’m out during a hot part of the day.
  15. I got someone to look at them and he said "sometimes they are from nutritional deficiencies." Yes and sometimes they are from shock, or low blood flow!
  16. Yes! I have them over both big toenails. Over and over again. No one seems to care!
  17. I know. It seems too unlikely! I really can’t shave under my arms or look upwards at a plane or whatever.
  18. It’s a little complicated. His office is so bad that I had to put in a complaint against them, and they retaliated, and long story short... I had to fire one of my favorite doctors. I’m certain that if I bring it up to the other neurologists, they’ll say "geez just don’t wear it, then" like it’s something I do for enjoyment. I only care because I think it MEANS something!!! Come on, this must be a clue! I am not diagnosed at all. No standing MRI because no one is really interested. Even the guy who ordered this - "just try a collar". Very interesting about the rotational vs. otherwise!!! I keep thinking I am NUTS and keep trying again and again. Maybe longer. Maybe shorter (shorter feels worse). Maybe tighter??? I have never had vertigo, but it feels more like that than my usual dizziness. This is almost like my eyes are rapidly moving. It’s hard to describe. I can go about half an hour myself. What do you do about AAI and how is it diagnosed?
  19. I have been trying to wear a rigid Aspen Vista collar as recommended to me by a dysautonomia doctor. My chiropractor agreed - I probably have craniocervical instability. I have tried several heights and can tolerate them, neck and head wise. When I have the collar on for maybe 15 minutes, I start to get weird symptoms like icy body parts, odd dizziness that does not feel like presyncope (vertigo, I guess), and weird vision impairment. I do have some of these symptoms when I try to turn my head or look straight up. What the heck? I don’t even know which doctor should be interested, because one neurologist tested my blood flow during a head turn, and nothing changed on Doppler(but he had done a scary and painful biopsy right before that, and my BP was very high for me, so I don’t feel that was a good test). Now he is not interested. Most of my other doctors just brush it off. I am pretty sure it’s a sign of something! I can’t really wear a collar. I feel like it’s the front of the collar that I can’t tolerate, but who knows. I am NOT a person who can’t stand stuff touching my neck or tight clothing there. No problem. My HR does not slow in these times. So curious!!
  20. I use midodrine as well. I can only tolerate so much due to the chills and tingles it causes , but it does help with no "real" side effects. Try a little dose!
  21. I have really bad asthma and have done well on metoprolol for years. I was very scared of it!
  22. I want upright imaging, but have not gotten it. I don’t think any doctors are interested. All I have is laying down MRIs that show a lot of stuff for my age. Bone Spurs, herniation, arthritis. My sister had a big time fusion, yikes. She had terrible radiculopathy, as do I. I haven’t been wearing the collar much because it’s too tall. We have not figured out how to make it slightly shorter. It’s also a little too long around, if that makes sense. My neck is smaller than it goes. So, it’s extra uncomfortable, because my chin is up and my muscles are fighting it. I think I have an anterior posture that doesn’t wolf witn a collar, but I’m game to keep trying. No, no one told me about the 4 hour limit, yikes! I probably wouldn’t anyway, and I myself know to avoid muscle weakening, but it’s scary that the doctor did not warn me. mounting the collars on the wall is a great idea! I always think of would be so great to have a trading post at some point, where stuff people have tried can be passed on to someone who wants to try that. My CPAP group does that. Car rides are one of the times I thought it would be most useful, too! Those really bother me. I felt better with simple manual traction and would love to try inversion. I was going to chart my vitals before and after the collar, once I get it right. Thanks!
  23. One of my doctors is just throwing stuff out there, and one suggestion was an Aspen Vista neck collar. I’m trying it... so far it is not too comfortable, as in, I swear my neck is fighting it! Has anyone had success or any tips on wearing these? I do feel better with neck traction, so I feel like he might be right.
  24. Thanks! I already have terrible palpitations but I am hypotensive.
  25. 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?
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