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RecipeForDisaster

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Everything posted by RecipeForDisaster

  1. Thanks. That sounds amazing - I wish they did remote care. I’m in the other end of the country in New England. I’d be working with Harvard and I’m already a patient at Brigham & Women’s. I’d definitely try grandrounds and crowdmed, though, what do I have to lose? Thanks!
  2. Thanks! Hopefully they take me. My referring doctor checked for the mitochondrial problems already. Something bad is going on, that’s all we know. My left ventricle is dilated and I have scarring/inflammation in my heart now as well. I just keep getting worse, and it doesn’t really fit any particular disease (unless it’s sarcoidosis which we will check in January).
  3. I’m also trying to get into UDN at NIH. Fingers crossed. I've had a home sleep study and I do have very well treated sleep apnea, using CPAP.
  4. I have lots of PVCs and bigeminy, which are bothersome. They went away during my exercise stress echo. I am on 2 different beta blockers, one in the morning and one at night, and the night one (metoprolol) is a higher dose. If I go too high (they are trying to increase my dose because the pounding is so bad), I get a lowered HR and a lot more bigeminy. The morning one (acebutolol) is not a high dose and it helps a lot with the PVCs. I was offered ablation and anti arrhythmics. I got put on acebutolol for my HR going to fast, and it happens to suppress ventricular arrhythmia as well. I’m on a 30 day monitor again now…
  5. I use Biotene tablets that stick to the side of the mouth at night. They don’t help completely, but release slowly, so I’ve found them worth using. I haven’t had a benefit from anything really working all night.
  6. I’m in the same boat, too. I usually get less than 2 hours of sleep in a night, despite trying everything - supplements, vagal stimulation, lavender, you name it. If my BP wasn’t so low, I’d want to try clonidine. The beta blocker helps but is not enough. My heart pounds too hard for me to sleep. If I do get to sleep, any tiny thing will wake me up, and then I can’t get to sleep again.
  7. I haven’t fainted in front of anyone except my husband. Almost, in MD offices, but not quite. I did so yesterday while on a 30 day Holter monitor and freaked everyone out - it was sinus tachycardia, like I knew it was. I got 2 calls from the monitor company and then, hours later, one from the on call cardiologist at the big hospital. Having a "diagnosis" of HYCH doesn’t mean much - no one has heard of it (few test for it during a TTT, which, by the way, would have been normal if not for the cranial Doppler)and there is not much treatment. Even my positional neurotransmitters are okay. I never thought I had hyper anything, though. Probably low flow/low volume.
  8. Me too - LR run very slowly (8 hours or more per liter!) is what helps, and I don’t have a port or PICC, nor can I get one… so I am choosy about when I use it. It doesn’t help for more than a couple of days if I get 2L. I still force myself to drink all 4 liters daily, but it doesn’t help and I don’t want the liquid. Florinef only gave me edema and no help in my symptoms. It’s so strange.
  9. Yes, no one really understands my body, including me - I don’t seem to retain fluids I drink, even if they are saltier than IV fluids. I’ve had so many tests I can’t even list them - including nephrology. Even my autonomic testing isn’t blatantly abnormal, except my cerebral perfusion(3rd TTT - others were inconclusive) - I got a HYCH label but it doesn’t explain everything. I look fine to most people most of the time, but I usually feel like I should be in an ICU. I sincerely wish we could lend others our bodies so they could not only understand how bad we feel, but try to figure out what’s wrong with it.
  10. I had a bad time for one day after my second shot, but after my third Moderna, I only had a heavy/sore/tender arm for one day. I wasn’t as feverish/didn’t have chills, muscle aches, or flu like symptoms like the second.
  11. Wow, you sound like me. My mom and I have similar symptoms (along with my sister and grandmother - all I know is that they are/were never thirsty). I’d pretty much never drink water if it was not for health. We never drank with meals, either. I do drink 4+ liters of salted water daily, and have for years, to try to treat whatever I have - it has not helped. I can drink nothing or all that and feel the same. IV fluids DO help tremendously. I am now being worked up for cardiac sarcoidosis, which is pretty rare but which can cause dysautonomia (I have signs of it on my cardiac MRI). But that is not hereditary. Good luck! Keep us posted.
  12. 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.
  13. 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.
  14. 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?
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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?
  23. 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.
  24. 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.
  25. 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.
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