Stacky

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About Stacky

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  1. Haugr- Sounds like a fantastic Dr. I’m glad you’re feeling better. Have you had any imaging done? Do you have elevated renin and aldosterone as well? Yogini- My Cardiologist and nephrologist have both done “tested” my by taking BP and pulse laying down, sitting, and standing but it’s usually not much of a change immediately. Typically takes a few minutes to start climbing. The kidney disease is new. He thinks it’s most likely from the uncontrolled BP. I just had a CT and haven’t received the results yet but got a copy and it pretty clearly shows a small cyst and several small stones. Any idea if a cyst could be causing these problems?
  2. What a huge pain.. Did your Dr do genetic testing to find that? My sister has tachycardia and low swings in BP but no highs. I’ve always thought that we could have some kind of wonky gene, especially since it started when we were early 20s. Yer smart! Haha. Thanks so much for the info. I feel like you’re the only person I’ve found that has pretty much my exact symptoms. How old were you when it started? I had moderately high BP at about 22 when I was on birth control but it leveled out when I stopped taking it. And then it came back when I was pregnant at 25 and has just gotten worse.
  3. Wow! Thanks so much for all the info. I feel like you know me! The Losartan works best out of all meds I’ve tired but doesn’t seem to touch the spikes. I have a Clonidine rx that I take when diastolic goes above 110 and it also works really well but knocks me smooth out. And the rebound spikes are rough. One pill turns into another and I end up having to ween off over a day or two. I thought about asking for the patch but I don’t know if I can handle the drowsiness. I’m already so sleepy all the time. Do you take it daily and if so, did the fatigue disapate at all? I’ve always been told to limit my sodium. I can’t tell if I feel better on a high or low salt diet... But low sodium doesn’t seem to help at all. What are causes of high angiotensin? Anything structural or simply bad genes? Thank you so much!
  4. It bounces between stage 2-3 chronic kidney disease. I have protein in my urine and sometimes a GFR in the 50s. They say it’s from the uncontrolled BP. Just diagnosed about a year ago. The high renin and aldosterone have been around for 6+ years. I’m not sure about the ratio.. I’ll have to look back on my records when I get home. Renin hovers around 2-3 times normal and aldosterone is usually between 1.5-2 times normal.
  5. I’ve been reading on here for like 5 hours and apparently have absorbed nothing.. First, I don’t have POTs... I mean, sometimes I do. But sometimes my heartrate is high while I lay down. And sometimes it doesn’t spike much when I stand. So... not POTs, but close. I also have very labile BP that tends to climb the longer I stand, but also sometimes doesn’t. And sometimes is high laying down! Yay! Today I have high BP and my heartrate jumps over 30bpm when I stand. I also have very high renin and aldosterone, and a 24 hr urine catecholamine came back high for NE. Not tumor high. Just like regular high. No pheo, no renal artery stenosis, no fibromuscular dysplasia, no answers. Blood work great. Lots of kidney stones. So for hyperadrenergic POTs, there’s hypovolemia, norepinephrine spillage, and low renin/aldo, right? Beta blockers usually work well? As do ARB’s or Ace inhibitors? SNRI’s? Beta blockers make my heartrate all crazy like with ups and downs but Corlanor does help lower it a little most days. Losartan helps with BP but doesn’t touch the spikes. They get as high as 180/130 on max dose. I can’t find a medication that works and now I have kidney disease and I’m so dang tired. I quit my job and sleep like 18 hours a day. I’m miserable. Can’t get into a study because it’s not real POTs, it’s innapropriate sinus tachycardia. My cardiologist told me to try eating breakfast. Like.... What? I would appreciate hearing the experiences of other members facing similar symptoms!