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About Libby

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  1. I haven't been around the forum in quite a while, but I hope you guys don't mind me popping back in to complain to people who understand. 😂 The temperature is in the single digits, my bathroom remodel just finished up a few days ago, so I decided that a bath in my new tub would be the perfect way to warm up. LOL. Silly girl. The bath itself was great. But then it was over and I had to stand up. Heart rate went through the roof, b/p dropped low enough for my vision to start to go white. I couldn't think straight enough to run cold water over my legs so I just pushed through th
  2. No one is awake for me to complain to, so I'm popping back in the forum to do it here. My tolerance for caffeine just keeps dropping. I've known for a while that I can't drink coffee. Today I had maybe 6oz of diet coke at a party and my hr is still 100+ 7 hours later, just lying in bed. On 100mg of toprol. I used to drink diet coke by the gallon in college. I'm glad to be rid of the habit, but I wish I could have it once or twice a year without feeling so...ew. Ugh. I just want to sleeeeeeep. ETA: I love beta blockers. Half a dose and I'm down around 80 bpm. So much better.
  3. Those at home genetic testing kits have always interested me for a number of reasons. Ancestry, to a point, but mostly because of the wealth of medical information that would result. It's not for everyone; we still don't know enough about genetics, except in certain cases, to say anything definitively. Knowing can create a lot of unnecessary stress (or a false sense of security). But I like this kind of thing. . I finally decided to take the plunge a few months ago with 23andme. The FDA slapped them with a cease and desist a few years ago, preventing them from providing medical informat
  4. I've been on beta blockers for about 8 years. I tried propranolol first and absolutely hated it. I felt awful; it basically knocked me out. I switched to metoprolol, which worked decently well, but didn't last as long as I needed it to. Switched to Toprol, the extended version of metoprolol, and, though I played with doses for a little while, that's the med that works best for me. Really, if I had to pick only one med, it would probably be my beta blocker. I'd recommend trying a different one. If you can find one that works for you, it's a good drug to have in your arsenal.
  5. I've been trying to be more active recently. I played volleyball today, and it went super well - I only got presyncopal once, haha - but now my veins are seriously aching. Arms and legs. I get some aching every day, usually at night, along with some pooling. Legs mostly, but arms and hands sometimes too. Never something I can't deal with. This time is pretty bad though. I can move, but it's difficult. Goes away when I lie down. Has this happened to anyone else after exercise? I imagine the ball hitting my arms didn't help, but it's happened before to a lesser extent so it can't be all
  6. My heart breaks for you. I lost my first dog a year and a half ago and my heart still aches for her. Eventually, you'll be able to smile at the memories without crying at the loss. Stay strong.
  7. http://www.dynainc.org/docs/ncs-pots-combined.pdf It's definitely not uncommon for a patient to have both. The tilt table test was originally developed to diagnose NCS. It's used for POTS now too, but a doctor who is unaware of POTS (and a lot of them haven't even heard the acronym, even cardiologists) might look at the test and only see NCS. Mine diagnosed me with NCS and inappropriate sinus tachycardia, despite it showing very clearly POTS. NCS and POTS both have very clear diagnostic criteria. POTS - your hr rises 30 beats (40 in children) or more, or above 120, within 10 minutes of
  8. I did it a few times a long time before I was diagnosed (but I was having some milder symptoms). It was great. No problem whatsoever and I would do it again in a heartbeat if I had the chance, even in my current condition (mild side of moderate POTS). The pressure of the water acts like compression clothing, you don't really get gravity causing the problems it does on land. Or I didn't at least.
  9. Not quite the same, but I've juice fasted. I know that proponents of juice fasting also claim that it clears out lingering infections and damaged cells. I can't maintain it for super long - 7 days is my max - but after 5 days or so my old, long healed injuries start to ache. Not proof positive, but it's an interesting result. Again, juice fasting, but there's a documentary called Fat, Sick and Nearly Dead (on Netflix, might be on YouTube too) where a guy cures himself of an autoimmune skin condition through a month or two of juice fasting. A second guy with the same condition (as well as
  10. Ooo, I'm excited to see any responses on this one. I have jawbone UP24 and the sleep monitor is awesome. I've been dying to get one with a HR monitor, though!
  11. Hm. I have leg pain from pooling and restless leg syndrome. I only have the pooling pain when I'm standing and walking on my 'bad' days, never when I'm sitting. My RLS happens at night and for me is more of a need to move my calf muscles. I'd liken it more to an itch/ache combination than a pain. Moving does help it, but it doesn't sound quite like what you're describing. My legs fall asleep all the time when I'm sitting and they really, really hurt when they wake up. But I don't know if that sounds like what you're having either. I have to hobble or just stand in one place for at lea
  12. Ugh. I hate it when my lightheadedness starts acting up. I hope you feel better soon! I'm not on midodrine at the moment but I have been. I remember that my neuro told me, when we were trying to figure out my dose, that I should keep it as low as I could, just in case I ever needed to increase it. She didn't want me to max it out. Though I'm not sure if she was anticipating that my body might get used to the dose and stop responding as well, or that my symptoms might get worse at some point and need a higher dose. It could definitely be just a blip. We all have good and bad days (weeks
  13. Thank you so much!! That was a fantastic reply! POTS and GP are my main issues, no EDS (you have my sympathies!) I have Hashimotos too, but that mainly contributes to fatigue. This gave me a lot to go forward with. A few things you mentioned wouldn't have even crossed my mind - at least not until I was actually in the situation, and by then it would be too late. Rounds/clinic is something I can't believe I didn't consider - I shadowed a doctor over the summer and stood whenever I was in a patient's exam room (which was so stupid of me, but I didn't want to inconvenience the doctor). I di
  14. So I'm thinking about going back to school. Medical school. Not just thinking about, I guess - I've applied and today I received an interview invite. Really exciting because now the pool of candidates that I'm competing against - at least for this school - drops from 5,000 to 600. After the high finally wore off, I started to think a bit. I don't want to get too far ahead of myself, or jinx myself for that matter, but when I'm looking at these schools it's something I need to consider. What accommodations am I realistically going to need. I would say my POTS is on the mild side of moder
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