Jump to content

JuliettOscar

Members
  • Content Count

    9
  • Joined

  • Last visited

Community Reputation

0 Neutral

About JuliettOscar

  • Rank
    Newbie

Recent Profile Visitors

102 profile views
  1. Nuun tablets are great. I'm a fan of the strawberry lemonade & lemon lime. I also take RapidRehydr8, it's cheaper than Vitassium but has a similar sodium content (200mg sodium, 99mg potassium & 50mg magnesium per capsule). I also eat a lot of parmesan cheese - one oz of cheese has 480mg sodium and I can easily eat 3-4 oz in a day. I'll look into an integrative MD. I'm already trying to find a family practice doctor. My PCP is an internist and I need someone to treat the whole family (we've been on a strep merry go round for a year now, and having NEVER had issues with strep in the
  2. Nope, that was regular coffee for me. I had considered giving it up, but I read that the caffeine can actually help as a vasoconstrictor. I don't think the diuretic effect is very strong for me, it makes me feel about the same as if I drank water. I do take a couple of electrolyte capsules first thing in the morning though, so maybe that helps.
  3. Thank you everyone! I'm definitely feeling a lot better about making an appointment with a specialist. I've wondered if I was really sick enough, or if they'd wonder why I was even there, like I was making a big deal out of nothing. While my symptoms are not debilitating (I can still do housework, walk, exercise, etc), it is exhausting and I do way less than I used to. Standing in the kitchen making a cup of coffee shouldn't get my HR up to 150bpm, walking up the stairs and standing still to do a bit of laundry shouldn't push it to 170bpm. I'm still doing active stand tests to see if there's a
  4. Thanks everyone. You've eased my fears a bit. I have a great PCP! When I brought up my orthostatic issues, he was genuinely interested, knew a little and referred me to the cardiologist. There are no specialists in Las Vegas on the physician lists and every online local group has the same problem - looking for good docs. I went ahead and requested an appointment with Mayo myself. I see my PCP for a follow up next month, I'll talk to him about referring. During the first appointment with the cardiologist, he looked at the HR & BP data I brought with me and immediately said, "Oh, this
  5. At what point do you seek an appointment with a specialist autonomic lab? Is it commonly used for initial autonomic testing? Or reserved for more severe/debilitating cases? I'm trying to figure out where to go next. My symptoms are not debilitating but do affect my day to day living and I would like clarity to whats going on and hopefully, find ways to manage symptoms and get a little relief. I've already struck out with one cardiologist (not only did I disagree with his assessment and dx of VVS, but he was arrogant and condescending, I won't be going back). I have had recent tests & imagi
  6. I could have written your post, with the exception that I have never fainted and my systolic bp drops by 10-15, diastolic rises, & pulse pressure narrows to about 11-13 before the bp monitor errors out. Stairs are a huge issue for me. Walking up the stairs my HR is fairly normal, by the time I get to the top its maybe 100bpm. If I sit down immediately, it might peak at 110-115. If I'm doing something like taking laundry upstairs to fold, as I stand there folding my HR climbs to 170s. I was doing a daily stand test every morning. I would go from 55-65 supine to 130-160 standing for 1
  7. Thanks for the tips on the exercises. My doc gave me a couple of maneuvers, but only to relieve pooling, not for orthostatic endurance. I'm still curious about the official POTS criteria and whether or not a mild drop in BP excludes POTS. I'd also like to read up more on the different tests that can go along with a TTT, so if anyone has personal experience to share or resources on the internet, I'd love to read both (or links to past discussions here!). I found Rowe's summary of OI & its treatment very helpful with medications often used. I'm just trying to be prepared to have an ac
  8. I just wanted to clarify, in case the images weren't clear, my HR upon standing jumps and continues to climb for the full 10 minutes (to about 135 in the first image and 160 in the second) and goes back to just under my normal resting rate only when I lie down. With the third image, it doesn't remain elevated throughout the day because I'm always sitting down Start a load of laundry (HR is 120-130), sit down (drops to 60), sweep, sit down, take a shower, sit down, walk upstairs (HR gets up to 170s), definitely sit down, etc. Its exhausting . So, I've read conflicting info on whether or n
  9. First, I just want to say, this is a great forum! I've been reading and learning so much here. I was recently diagnosed with VVS based off of my own standing tests & data I brought in when I went to see the cardiologist (he said a TTT wasn't even necessary because of it). I recorded my heart rate while standing for 10 minutes, and took BP every minute. To me, based on what I have read, it seems like it is POTS. Cardio says VVS (I've never fainted or felt like I was going to, just extreme discomfort, needing to sit, out of breath, nausea w/narrow pulse pressure, etc). He also said it
×
×
  • Create New...