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Everything posted by RecipeForDisaster

  1. My ANA is 1:160 positive (I think speckled, or was if homozygous? Whichever one indicates lupus) and was never positive until this year... ESR/CRP are okay, rheumatoid factor normal, DNA test for lupus and mito normal, and so I'm told by my PCP and hematologist that it's not a big deal and I don't need follow up. I do have a lot of soreness, low temp, recurrent infections... I may push to see a rheumatologist but I doubt it'll get me anywhere.
  2. I've taken these for many years. Some symptoms did improve, my numbness and tingling most importantly. I use both sublingually. I'm quite sure I have MTHFR mutation but haven't been tested.
  3. Both of my cardiologists assured me that metoprolol, at least in small doses, isn't potent in lowering BP. Mine is very low to begin with and I haven't noticed a difference when I take it vs. when I don't. I use the 24 hour extended release version which doesn't last a full 24 hours for me. The different BBs have very different functions.. I am limited to specific ones so I don't have issues with my lungs.
  4. I can only handle half of a beer now. I'm a huge craft beer person so it's very disappointing. I used to be able to try 3-4 and now I have to split just one with my husband, which means we have to agree on which one to drink. First world problem, but still. i have horrible effects from more alcohol than that, even though I was well acclimated before. Getting hot and sweaty, nausea, very fast pounding heart, general illness waking me from sleep... nothing ever helped with it. ANY wine even homemade sulfite free stuff causes this, too. It's so unpleasant that it's not worthwhile to drink wine or a whole beer. I can drink the non-alcoholic stuff, but it's awful. I had a 30 day Holter and it showed lots of PVCs and PACs including bigeminy (every other beat), and fast sinus rhythms... that's about it. Pre- and during cycle is a really bad time for me too. Pretty much everything gets worse. I think taking B6 that week has helped somewhat, but not enough.
  5. We vary so much. I can't sleep without metoprolol before bed. My heart races and pounds too much to consider it. Showering when it's warm out (in winter it makes me too cold) and reading, definitely...
  6. My neurologist in Boston just told me >15gm salt. I was surprised. I adore and crave salt, I'll even lap up plain old sea salt, but even I think that's a lot. I balance it with fluids, and I love to drink broth too, A liter of normal saline has 9gm in it! I guess I got enough the other day when I got 1500mL.
  7. I'm sure I have MTHFR too. My levels are about 2000 and my hematologist is not concerned about it even though I haven't been tested for that mutation (he says it's so common it's not worth looking for-I don't know, but he didn't want to bother testing). I had exactly that scenario and take the methyl version of B12 and folate,
  8. Thankfully, I have ONE doctor (out of about 10) who is willing to write my script for IV fluids at home. I've gotten the exact same "advice", lying on the floor hypotensive and being told to drink more. Believe me, if that helped, I'd be fine. It's like I'm asking for narcotics for goodness sakes. Most of my doctors say drinking does the same as IV fluids. They should try it when THEY are in shock. I was going to get an infusion the other night and started really crashing soon after starting it. We ran the first half liter as fast as it would go, then another liter, and it turned me right around. The next day, I felt better than I had in a long time. Otherwise I would have had days of not doing well. I don't know why there is a huge huge difference, for me, in receiving 1-1.5 liters of saline and drinking as much as 10 liters of electrolyte balanced solution, but it's very clear. I urinate most of what I drink but I don't when it's IV. I can't explain it, but it's dramatic and vital to me, as nothing helps as much. It isn't enjoyable or inexpensive... I wouldn't choose it if I didn't have to!
  9. Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that. The ranges are a little wonky too... are you over 2000?
  10. Yep, me too, even as a teen i never could develop any stamina, thought passing out was normal, ate salt by itself.... have always crossed legs or sat on them and stuff, never was comfortable sitting like a regular person.
  11. I had electrical sweat testing and Valsalva and things there when I had my TTT. In Boston. No transcranial Doppler, though.
  12. Selectiveness to cardiac receptors is a big reason why I could only be on 3 of the beta blockers which don't do as much in the lungs. Metoprolol doesn't affect my breathing.
  13. Unfortunately, I have found that doctors get very defensive or arrogant when they are wrong or can't figure something out. It seems to make them very insecure. I have had several experiences like this. I'm in a similar boat. I seem to have dysautonomia but not POTS and it has yet to be nailed down.
  14. I take 25mg extended release metoprolol at night. It helps, no doubt, with the pounding and tachycardia. If I take another 12.5mg, which helps more, my heart rate goes to about 50 and I get a lot more PVCs when that happens for some reason. It's strange but enough to keep me from doing that even if my cardiologists tell me to take extra if I need it. I just hate the feeling.
  15. I just got some cooling UPF 50 arm sleeves-they are wonderful! They have that feature where you wet them and they feel very cool, plus they are compressive and protect against the sun.
  16. I wonder if you see Dr. Novak because I am also treated in Boston and he told me he had another patient just like me (a woman from Hawaii) who he never did figure out. I appreciate his honesty but it was not inspiring! I also have a non-specific diagnosis and am not sure about it, but I am fairly certain it isn't POTS. I'm in my 30s too but have been sick for a long, long time. I passed out in my early teens "for no reason" and honestly thought it was normal. I have horrible sleep problems as well. I have had a lot of nights just like that, waking every hour, giving up at 2 or 3 am because getting back to sleep is just too hard to yield only another hour of sleep. Metoprolol has helped a bit because my pounding heart is the most difficult symptom to sleep through. You might look into sleep apnea testing-I have that and CPAP has helped somewhat.
  17. It doesn't make me nervous at all, it just highly distracting and annoying, particularly if I'm trying to sleep. I think a lot of doctors assume you're mentioning it because you think it's dangerous... not in my case. So, to them, it's usually like "well just ignore it since you know it won't hurt you" and I want to say "there's going to be an elephant tapping on your chest from now on, just get used to it"
  18. This is true for me also. I never had noticeable or forceful beats before I got sick. I have been kept up all night many times. The stress hormone theor sounds like a good one!
  19. I don't believe you should be able to see your heartbeat through clothes, or even see it in your chest unless you're pretty thin. Of course you can feel it in any person but I think we are talking about heavy duty, attention getting thudding.
  20. Now I always plan on getting a bag of saline after a big blood draw (my hematology visits usually cost 15-25 vials!) because it ruins me for days too. I just can't afford the volume loss. With me it's not the needle either, I'm good with needles and never have issues with IV starts. A few vials drawn is okay too.
  21. I was doing worse in the office than my previous. My BP was actually lower too. To me not much is worse than going around with very low BP unsteady on my feet and not able to eat or sleep... I'd actually rather have some times where I'm on the floor than a solid five day period of this. I was miserable. Believe me, I celebrate being able to walk a quarter mile more than I could before... little wins! But this day was a fail.
  22. My laptop screen bounces along with my heartbeat. I'm always told to just ignore it but if you are getting bumped hard all the time, apparently, it's not something you can get used to. It doesn't make sense that a hypotensive person has such a pounding heartbeat until you think about a heart that is mostly empty (which is how I feel, that I don't have any blood) smacking each beat out. I'm completely undiagnosed by the way. Interesting findings come up with vitamins, hormones, positive ANA, etc. but no answers, still. Two TTTs, one done totally wrong (painful biopsy during it!) and one at the beginning of my journey when I was doing a lot better I doubt I'll do a third, I'm getting dysautonomia treatment anyway and it sure sounds like that's part of it.
  23. @WinterSown maybe my story was confusing-I don't mind at all celebrating with doctors when I'm having a good day-during this particular visit i was doing much worse than usual an drew having a very hard time getting through almost a week without being able to eat, with no help for that. If my baseline was a 5/10 I was at an 8/10. Yes, I wasn't on the floor, but suffering a ton and not able to do anything. So to say "glad you're doing better" when overall I was doing a lot worse...
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