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Everything posted by rgny

  1. It's going to be hard to keep her away from alcohol considering her age and just starting university. Does it have anything to do with what she is drinking? I know personally I can't handle red wine or any of the harder liquors like whiskey but I can still get down a stout beer on occasion without it bothering me much.
  2. Sleepy_Lady, I have had SO many days like that!
  3. I don't know what it is about swimming but the day POTS started for me was after a trip to the pool. I walked into the pool my usual, healthy self, spent an hour or so playing with my son in the lazy river and as I was leaving I fainted in the zero-entry section. Never really been the same since and haven't tried going back in the water. I hope you get some good advice!
  4. I'm no health professional and you should definitely run this by your OB/GYN or primary care doc, but do you know if you have an underlying inflammatory condition that may be causing some of your symptoms? Pregnancy produces an inflammatory response even in healthy women and it can be widespread systemically by third trimester.
  5. YES! Only four more years! Sorry, I'm being kind of sarcastic. My understanding is that a total remission is more likely for younger POTS patients and that people who develop the condition later will have to deal with it the rest of their lives.
  6. Becia, I'm not even sure what to say on this because I'm one of those odd POTS ducks who is not medicated. I take nothing because I am so sensitive to medication side effects when I'm in a flare. I give my doctor the side-eye when he tries to whip out the prescription pad. Over the years I've tried beta blockers, calcium channel blockers, an SSRI, ranitidine, etc. Nothing improved my quality of life (except for the SSRI briefly) and all had differing and unacceptable side effects. I know how POTS makes me feel and for the most part, I can deal with it using lifestyle modification. I don't think it makes me a bad patient or someone unwilling to do what is necessary to have decent quality of life, it's just that for all the testing I've had and all the medication trials, nothing has made that big of a difference in how I feel from day to day. Even now, I have a laundry list of medical tests I need to undergo and I've decided I'm taking the rest of the summer off and I will don the big-girl panties in September and deal with it all then. And you are definitely NOT a wimp.
  7. Getting a proper diagnosis can be a long haul. I carried the diagnosis of IST for four years and was trialed on all kinds of rate control drugs with horrendous side effects. My understanding is that with IST, your rate never drops much below 90 bpm even when lying supine; with POTS, your rate can drop into the normal range or even a little low when supine and you don't get the crazy increases until you are upright. My GP finally diagnosed me with a poor-man's tilt table in his office. When my heart rate increased by 50 bpm within a few minutes of standing up, he turned around and entered "POTS" into my medical record and my cardiologist is on board now. Good luck to you.
  8. blue jay, I have the same problem with stairs! It's like I lose the right-left rhythm and almost tumble over unless I think about what my legs are doing. I haven't noticed it so much with walking.
  9. I don't have a lot of medical knowledge but my blood pressure ranges from 80/60 to 130/80 depending on time of day, posture, activity level, whether or not I've eaten recently, etc. I've also found that my blood pressure reading has little to do with how I'm feeling. I took my blood pressure a few minutes ago because my vision is blurry and I'm feeling extra fatigued and it was 110/75. Conversely, there have been days when I'm running around feeling not half bad and my blood pressure will be very low at the time. So many weird things about POTS.
  10. You may want to research 'ice pick headaches?' They're fairly common, usually lasting just a few seconds and can pop up pretty much anywhere on your head. And yes, definitely check with her primary care physician this week.
  11. I have to have protein in the morning (and as often as I can get it in) because I don't eat large amounts during most days and I want to keep some muscle mass. So breakfast is usually turkey bacon and baked beans, and maybe a slice of toast with melted cheese. And so much tea. So much. (It is decaf, though.)
  12. I love these so much! I am seriously tempted to put some of these signs in my yard. I especially love the "AVOIDED THE ER."
  13. Our next-door neighbors are lovely people but the whole family are type A over-achievers. Which is great and I'm not knocking it. Different strokes and all that. But they are also highly extroverted and for some reason, feel the need to share all of their accomplishments with the neighborhood with yard signs and balloons. For instance: CONGRATS ON YOUR PROMOTION! or BON VOYAGE HAVE FUN ON THE SLOPES! or CONGRATS ON MAKING VARSITY! I am so tempted on my worst days to put up yard signs of my own...with black balloons. Stuff like: SHOWERED TWO DAYS IN ROW, WTG! YOU WERE UPRIGHT FOR 20 MINUTES STRAIGHT, WOW! YOUR NEW COMPRESSION HOSE ARE WORKING GREAT!! What would you put on your sign?
  14. I took Celexa when I first developed symptoms in 2007...I hadn't been diagnosed with POTS yet and I was given it by my former PCP for "anxiety and depression." *rolls eyes* But as a happy accident, it worked very well and brought me out of a flare in about a month's time. I weaned my initial dose of 20 mg down to 5 mg and maintained on that until I had surgery last year, then I took myself off. And lo and behold, I am in the midst of another flare and considering going back to 5 mg. I had a few side effects of palpitations, weight gain and some emotional flatness but I was very, very functional; able to volunteer, work out at the gym regularly, keep up with a full day's schedule. It's one of those maddening things where you won't know how you'll react unless you try it, and if it turns out it doesn't work for you, then withdrawal can be a bear.
  15. Corina, I am definitely worried about blood pressure control which is why I keep pushing the date of my surgery back. My pressures usually run 120-110/85-75 but lately they have been around 90/60 and that's with hydration and compression hose; it's gone as low as 80/50. I've recently lost about 15 pounds but not sure if that would affect my baseline blood pressure that drastically. I trust the surgical team to handle any blood pressure problems but I keep myself awake worrying about recovery and how my body will handle it. I'd love to skip the hysterectomy altogether but every doc I've seen has recommended removal. :-/
  16. Huh. I only have one moon, on my left thumbnail. I have no idea if this is different for me or if I ever had moons on the other fingers. I also have deep vertical ridges on all my nails which I think is just aging.
  17. My understanding is that to be diagnostic for POTS, your heart rate has to increase more than 30 beats per minute within five minutes of standing from a supine position. I don't think minute to minute variances in your heart rate, which even healthy people experience, is as crucial. When I keep records for my cardio, which I'm doing right now, he is most concerned with what my pulse and b/p are like when I am lying down and what happens to it when I stand. At night, my pulse rate when supine is around 55-70 and it bounces up to 110 within seconds of standing up. I don't measure my heart rate at other times because I would drive myself crazy.
  18. No ideas or thoughts, but I do understand! I also can't take in a lot of sodium without getting major nausea. I don't throw up but I'm also emetephobic so I haven't actually vomited in 25 years. If I didn't have that mental block, though, I would definitely be getting sick after too much sodium. I've tried canned soup, chips, salt tabs, olives, pickles and they all give me raging nausea for about an hour afterward. I can tolerate gatorade, canned baked beans and turkey bacon. It seems my stomach can handle the sodium better if I get a shot of protein with it.
  19. My doctor is going to try for a laparoscopic-assisted vaginal hysterectomy with both ovaries removed but my uterus is huge and I don't want morcellation so he may have to convert to total abdominal hysterectomy. He'll make the call once I'm under. I will admit to being a little nervous this time just because my gallbladder surgery only took 30 minutes and the hysterectomy will be 2 to 3 hours so I'm not sure how a longer exposure to anesthetic agents will affect me. Plus I'm in the middle of a flare right now and with my first surgery, I was asymptomatic. Like you, I'm also worried about blood loss and maintaining blood volume and blood pressure, etc. but I just remember the first time telling everyone (I may have even mentioned it to housekeeping, haha!) that I had POTS and I needed extra IV fluid...I even came around in recovery talking about it. Make sure it is written everywhere in your records...my nurse wrote POTS in great big red letters over all of my paperwork. Good luck!!
  20. I had gallbladder surgery last year and I'm facing a hysterectomy this fall. For my gallbladder surgery, I made mention of it at my preop screening and also met with the anesthesiologist ahead of time so I could explain POTS. I arrived an hour early so they could pump me full of extra IV fluid. I handled the anesthesia well and was able to leave the hospital the same day. My recovery was pretty straightforward with no complications.
  21. I love the huge display that our town does every year, mostly because we're so close we can just sit out in the front yard and have a great view. But I absolutely hate the random fireworks that our neighbors set off; I jump every single time and my heart rate and B/P go crazy. I think if I'm anticipating the noise, it doesn't bother me as much. I'll be wearing earplugs or be plugged into my iPod for most of the weekend, I think.
  22. I do get this occasionally...it actually makes the angles of my jaw ache a little bit. I've never connected it to POTS, though. Interesting.
  23. My rate is usually 60s to 70s when lying down, 80s to 90s sitting quietly and ranges from 110 to 150 depending on activity level (standing and washing dishes it's around 110; if I'm up and down the stairs doing laundry, it will hit the high range). Like everyone else, if I sit or lie down, usually with a fan blowing on me, it will calm down. Because of a gastric issue, I can't guzzle a lot of fluids at one time or I get super nauseous, but I will try to get a little extra water down.
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