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JuliettOscar

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About JuliettOscar

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  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 past, I'm not ready to have the ENT slice the whole family up!). Unfortunately, Las Vegas is a medical desert, good docs are hard to find.
  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 pattern (as far as I can tell, there is no pattern to my good/bad days). Yesterday after standing still for 5 minutes, my HR was over 140 and the BP monitor had given up after a reading of 73/57 at about 2 minutes in. And I can't figure out if I'm actually exhausted or if it's just the chest pain/pressure, air hunger & headaches that keep me slumped in a chair all day. And the brain fog is the worst! I dropped the classes & program I was starting at the college because I can't seem to focus on reading. I'm preaching to the choir here I'm sure! It seems half the time my symptoms are very POTSy without significant BP changes, and other times I most definitely have OH (even though my drop yesterday still wasn't a 20mmHg drop....91/54 lying flat to 73/57, its been worse the last few days because I haven't been keeping up on salt & water and I've eaten my weight in Halloween candy ). It would be nice to have some clarity and a general path to follow (besides "go exercise for 6 months"....I was already taking in 8g of salt & 2.5-3L of water when I saw the cardiologist). I've contacted a neurologist in Phoenix that I've seen recommended and I think I'll look into the autonomic testing offered at UCLA as well. Maybe Stanford in Palo Alto too! I'll go to whoever is willing to see me. I'm thankful I have a great PCP, we've already covered a lot including sorting out the nutritional deficiencies. I'll have to see how he does working with a specialist, I'm cautiously optimistic!
  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 is VVS. It could be orthostatic hypotension, maybe delayed OH. It doesn't matter. Salt, water & exercise". (I have never fainted, or even felt like fainting). He told me it couldn't be POTS because they usually have other things going on, but he never asked if I did and didn't really let me talk (he definitely wanted to lead the discussion with his questions, expecting only quick concise answers). So I figured I would at least get through the cardio workup with him (holter & treadmill test). The more I saw him though, the worse he got (he snickered a lot, at my choice of exercise, at the fact that I'm not already dedicating an hour a day to exercise anyway, etc). His staff wasn't much better, nice, but clueless lol As I was getting wired up for the stress test (standing still in one spot), my HR was hovering around 100 (resting is usually 55-65). She tried to soothe me and tell me not to be anxious and that she wouldn't start if I'm over 100 (better get moving quick then lady, because it only gets worse!). The last appointment, he said my elevated heart rate is just an exaggerated response to exercise, even after seeing that a stand test has my HR climb to the 160s. "Salt, water & exercise and see me in 6 months". No thank you.
  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 & imaging to rule a lot of stuff out (holter, treadmill stress test, EKG, echo, xrays, chest ct, brain mri, labs) and everything is coming up normal. I'm thinking I could keep searching for a local doctor familiar with dysautonomia (there really aren't any in Las Vegas that I know of), or just get it done right from the start in an autonomic lab. Is that jumping the gun if I haven't exhausted local resources?
  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 10 minutes, and down to 45-55 supine again. I just finished up my cardiology workup and the doc says its a "faster than normal response to exercise". Who knew standing perfectly still counted as exercise To answer your question, I believe the 30bpm increase is from lying to standing.
  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 actual discussion with the cardiologist at my appt in a couple weeks, rather than try to remember everything a doc says and research when I get home
  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 not BP can drop with POTS. I've seen descriptions of POTS without a mention of BP, and a few places, as you've described (HR increase WITHOUT BP drop). I read in an article by Dr. Rowe that to be NMH, it must drop by 25. Mine has never dropped that much (that I've recorded, I don't think it does). It's all very confusing. Living in Las Vegas, I'm dreading having to try compression hose. I'll give it a shot though before medication. The water & salt doesn't seem to have any effect.
  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 doesn't really matter anyway because it's all treated the same. Is that true? Is there any benefit to knowing precisely what the issue is? If there's the slightest benefit, such as having a better idea of what medication to start with, I'm going to insist on actual testing. I'm not too thrilled at the idea of starting any medication and want as much info as possible beforehand. Are there any tests I should insist on other than the TTT? I'll save the lengthy description and just attach a couple of examples of my charted HR & BP (lying to standing to lying, BP gaps I believe are due to narrow pulse pressure, machine quits giving readings). And I'll add one of my HR readings for the full day (no exercise, just my stand test in the AM and chores around the house, this one shows 130s, but I've seen 170s). Hopefully the images aren't too huge! Also wanted to note, these are after upping sodium & water to about 4000mg/3L a day (I haven't noticed much improvement). For those that tried salt/water/exercise first, was it helpful? How long until you saw improvement? If I could just see improvement in fatigue and migraines, I'd be thrilled.
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