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Everything posted by RecipeForDisaster

  1. 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...
  2. 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.
  3. 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,
  4. 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 arou
  5. 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?
  6. 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.
  7. I had electrical sweat testing and Valsalva and things there when I had my TTT. In Boston. No transcranial Doppler, though.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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
  13. 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"
  14. 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!
  15. 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.
  16. 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.
  17. 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.
  18. 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
  19. @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...
  20. This reminds me of several months ago when I was finally on all the meds I'm on now, minus the saline.... I had a 5 day time where I wasn't well enough to eat and was very weak, nauseous, and wobbly, BUT I hadn't completely passed out since starting all of the meds. I was having quite a bad day and tired of trying to force myself to eat when i wasn't up to it. The cardiologist said "glad you're doing better ". ??? Not passing out is not removing my whole issue, people!!
  21. Anyone who felt worse on cyanocobalamin could always try sublingual methylcobalamin. It really can't hurt and might safely replenish your levels. I went from 120 to 1440 with just sublingual. That is really similar to direct into the bloodstream. I only have minor numbness and tingling now, and I don't know if that is my neck/shoulders or neuropathy or B12 but it's livable. The cyano part can't always be cleaved off for you to use the -cobalamin, which is more common than previously thought. Somehow that makes you feel like you have - no- B12 because the cyanocobalamin takes up a receptor
  22. I had that abnormally high for me overnight/sleeping heart rate before metoprolol too. No one thought it was a problem because it was only in the 90s but I normally run in the 60s when I'm not active... and it's hard to fall asleep otherwise! i think most people with seriously low B12 feel worse after starting to supplement because the nerves are waking up again. I learned about the inability to use cyanocobalamin online and then from a doctor because I only got worse and worse from cyanocobalamin. It was actually unbearable, pain, numbness, pins, and needles worse than ever, never
  23. It stunk for me because the shots and nasal spray made me so much worse. I definitely can't utilize cyanocobalamin (makes my deficiency make even more sense because food is fortified with that form) and it's very difficult to get another form as an injection or other route. My ferritin and vitamin D were also very low. It's interesting how many of us share these. With each discovery I hoped we found something treatable that would fix me, and I think increasing my levels did help, but they didn't give me more than 20% improvement if that. I wonder if I have other deficiencies-I don
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