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About GinnyIckle

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  1. I used to read by the light of a nightlight across the room. Or, dictate to my phone. Or, listen to music and TED talks.
  2. The supplement curcumin (extract of the spice turmeric) has anti-inflammatory properties. In preliminary clinical testing, it does about as well against pain as ibuprofen, and soothes rather than irritating the stomach. But, like anything else, different people respond differently.
  3. Pulse pressure matters. It's what makes our blood actually circulate. Pulse pressure is the difference between the pumping (systolic) blood pressure and the resting (diastolic) blood pressure. sBP-dBP=PP For 97/79, that's 97-79=18 Normal resting pulse pressure is about 30 to 50. Under 30 is considered narrow*, and under 25, extremely narrow. A PP of 18 is extremely narrow even for a PoTSie. I'm supposed to get a lift to hospital if mine stays below 20 despite electrolytes, water, lying down in a cool room. Usually, that will do it for me. Because I get really stupid when my blood is all trying to go to my toes, I've tried to program myself to rest early and often (really boosts my productivity), and to sit or lie down before I fall: Better down than out.
  4. There's a name for it, but I have PoTS for brains today, so I'm drawing a blank. It's definitely not just you! Something to do with the body overreacting to an influx to the core of that blood draining out of the arms.
  5. Thanks, Firewatcher! I just got a copy of my "results normal; continue as before" blood tests and was shocked to see that the results included an eGFR of 84, "consistent with CKD stage 2." If hypovolemia can drag down eGFR, then there may be no kidney issues after all. Certainly, distributional hypovolemia has been an issue lately, with my dBP hovering in the 40s. I've been limp as an overcooked GF noodle, despite boosting salt and water intake. The high-normal hematocrit and hemoglobin concentration do hint at low circulating blood volume. And the low-normal sodium also supports the hypothesis that, what hasn't been pooling below the waist, I've been peeing away almost as quickly as I can take it in. Still not happy with my GP / PCP, though. Normal, it's not. Neither is one liver enzyme, the ALT, which has edged up again. If it stays here or rises again, they'll have to change my Sjögren's meds. My C-reactive protein isn't normal, either. It's been worse, before Sjögren's treatment started, but a CRP of 8 is not normal. Really not pleased with this doctors' office. But ... ... On the other hand, they did just double my midodrine (I was at a tiny 2.5 mg, tid), which hopefully will help my poor ANS and weary vasculature to do their jobs. Hopefully, when I go back in a month for a follow-up, things will have settled down. Hopefully, I can get them to repeat at least the kidney testing, and add a urine test as well as the bloods. Argh. But, thanks again. Good-health wishes to all!
  6. Speaking of pulse pressure ... An screenshot of a few readings from a recent bad day. And another from today, which hasn't been terrific. When the pulse pressure gets really narrow, I get numbness and tingling in my face and hands, and start getting tunnel vision. At that point, a high BP is a relief! (PP narrower than 20 is not a good thing, especially when combined with low BP. Blood must flow! Normal pulse pressure is more like 40 mm Hg ) I'm taking a lot of readings now because I want to be able to show my doctors what's been going on. It would be even better if I could add notes to say what I had been doing before a reading, and whether it was taken standing, sitting, or lying down, but the Braun app doesn't do that. I'm getting tempted to shell out for the Withings cuff; their app, I've just discovered, allows notes and tracks pulse pressure. (Omron makes a great cuff, and may be another alternative, but I haven't checked on their app yet.)
  7. Hi, I'm 58, diagnosed (finally) at 49. If I had any menopausal symptoms, they got lost in the noise from Sjögren's and hyper POTS, both of which got bad after a bout of mono in my mid-40s, then worse after I had shingles. Sometimes with hypovolemia, especially if the BP has gone really low or the PP really narrow, the dysautonomic body will overreact and drive up BP and HR. I've been having a bad spell with BP going low enough the Braun cuff can't read it (I think it just errors below 40). Then, about the time I'm feeling light-headed and pre-syncopal, the adrenaline kicks in, and the roller-coaster ride begins. Before I was diagnosed, it got really crazy. They kept telling me I was fine, so I'd try to act it. And I was still on a "healthy" low-salt diet (now, I'm on 8g sodium/day), and no meds, and no compression gear. I had BP readings from 230/40 to 285/270 to 32/LO, all within 10 minutes, on one very bad day, the rest of which was spent in bed. (I don't recommend it!) Things that make it worse for me include: being dehydrated; or running low on sodium; or being too hot or even allergic (surface blood vessels dilate, so the blood-vessel volume goes up but the volume of blood available to fill them can't increase to match, not without time and water and electrolytes); or eating a big or high-carb meal (the guts get greedy when they have digesting to do); or, still, doing too much or resting too infrequently. Any of those can increase my autonomic instability. Things that help me include a cold drink; more electrolytes (I'm adding a sports electrolyte powder to my drinks); lying down with legs up; small low-carb meals; keeping allergies well-controlled; resting early and often. I don't know what's causing your rollercoaster BP. Even just being tired can throw mine for a loop. If you post again, it might help if you give sBP and dBP for each reading you mention. 140/130, 140/70, and 140/40 are very different! Including HR helps, too: Even if BP is a steady 110/60, the situation is very different with a HR of 240 or 120 or 60 or 30. Best wishes!
  8. Is there anything out there, free or cheap, that will make pretty charts of raw vitals readings? I'm hoping for something that will calculate and highlight pulse pressure -- the difference between the systolic (top number) and diastolic (bottom number) BP; the pressure that makes the blood flow -- as that is harder to see in raw numbers. PP is one of the biggest problems for me, but it's also something that doctors aren't used to considering except in accident victims. I don't want to have to design a spreadsheet again (old PC died) and so many of us need this, there should be something!
  9. Hope the new cuff is working out for you! I have a new wrist cuff -- Braun iCheck 7 -- with Bluetooth so it captures readings automatically. But I'm afraid I must give it a mixed review: The bad: * The company's HealthyHeart app does not allow me to add notes: I can't say whether I had been resting or active; was recumbent, sitting, standing; experiencing any symptoms. * The cuff is slow to start up. I don't need to watch the company name, the tumbling graphics, and my name scrolling across the screen before it lets me take a reading. I'd rather be able to just get a reading now, thanks. * I suspect the range of BP values it will measure is not as wide as some. I keep getting ERROR 2, which the app tells me means "out of range". I haven't been able to find out yet what the range is, but the cuff hasn't given me a diastolic reading below 40, so I suspect that might be the cutoff. (My old cuff's range was 30 to 300 -- and if one value was out of range, it would give me the others, so a particularly miserable day might include a reading of 55/LO 130, or one of HI/270 45, or both. Glad to be doing better now.) * The display on the cuff itself is rather small, so it might not be good for someone with a visual impairment. * The red, yellow, green color-coding of readings doesn't acknowledge that lower isn't always better. When I was at 62/53 the other day, with a HR of 54 (irregular), I did NOT appreciate the "green is good" glowing heart off to the side. * The hard shell of the cuff has raised lips on each side, which help hide the minor unevenness over the sensors and inflation device. During use, these narrow wedge-shaped edges press into the skin. That's not comfortable, it leaves marks that persist for some time afterward, and I can't think it improves readings. The good: * The fabric against the skin is smooth and non-irritating. * The automatic transcription of readings makes for a lot less work -- and a lot more credibility at the doctor's office. * The app does allow export of data. Yay! * The readings seem accurate. They match other readings, symptoms, pulse strength. * It stores up to 100 readings in the cuff itself, and transmits them when it finally synchs with the paired smartphone. So, I can use the cuff when the phone is in another room, and I can leave the phone's Bluetooth off most of the time to preserve battery life. * Braun is one of the big names that physicians trust. It's known for good products, and therefore is more likely to a) yield good data and b) be believed.
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