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BuffRockChick

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About BuffRockChick

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  1. I'm in WI too. The weather changes are hard! The faster the weather change, the more likely I am to have symptoms. Humidity is tough to adjust to! I agree with Pistol - don't lay around. Move as much as you can, even if all you can do is bed exercise.
  2. I don't have raynaud's, but I get chilblains. I am struggling with painful cold hands. Seems like there's no help for us! Doctor says exercise, and I do, but it doesn't help my cold hands. The other common treatments cause vasodilation and that's a no-no for POTS.
  3. Hi @Mainer re: diet, very low carb, like ketogenic diet eliminates my fatigue and low blood pressure after eating. Fasting helps me too. I feel best 6 - 20 hours after eating. I am finding that drinking to thirst only has been helping me more than pushing salt and fluids. But it's winter still here, and I don't sweat when I workout, so YMMV, and I might change my tune in summer. I've gone from bedrest/disabled to fairly functional. The best exercise for me was simply standing up. (I'm not a fainter.) Last week was my son's spring break. He has a lot of behavior problems an
  4. I had high testosterone when I was on a medication that increased my insulin. (I'm not diabetic, it was a psych med). Elevated insulin is a significant factor in high blood pressure. I would start investigating insulin to see if there's anything that fits what you're experiencing.
  5. It helped me function, but the side effects were horrible. I got the hypertalkative side effect - very annoying!! I lost 40# in 6 weeks, was literally starving to death and that made my POTS worse and I was falling a lot more than usual. Also had disturbed sleep side effects. I coudln't tolerate it. Midodrine had similar benefits for me without the nasty side effects.
  6. When I started florinef, I tracked my daily sodium and fluid intake. I was able to see that florinef had no effect at all if I didn't get a minimum of 4 grams of sodium in a day. Over 4 grams of sodium, I got beautiful symptom relief. However, I needed an additional medication (midodrine) to help with blood pooling too.
  7. More updates! I had fluctuation of symptoms. Added midodrine which controls blood pooling better. I started exercising and learned about ANS hacking and tried a corset for abdominal compression. I did exercise as "movement" and focused on spending more time standing each day until I got to 7 hours standing! There are things we can try to hack our ANS for better functioning. Meditation down-regulates adrenals and stimulates the parasympathetic (rest and digest) system. Laughter hacks the ANS too. Time in nature stimulates the parasympathetic. Sunlight stimulates the pineal gland. Etc.
  8. What can you do? Track your symptoms diligently and use google. google scholar is great! I had orthostatic vitals checked once a few years ago and it was missed! I discovered POTS while reading only about every possible reason for fatigue (hint: hundreds of them). I stood up, checked my pulse, and the rest is history! i had to advocate strongly for myself because I'd been misdiagnosed so many times with psychiatric conditions. it was worth the hassle.
  9. I had a recent surgery and felt FANTASTIC afterwards. I woke up from anesthetic feeling great, but after about 10 minutes the pain kicked in and it took them a while to get it under control. I couldn't walk unassisted at the hospital, but by the time I felt incredible. I suspect i felt so good because I had 4 liters of IV saline. I felt terrible the next day with normal post-op pain and POTS got worse through the next 2 weeks from deconditioning since I wasn't able to return to normal activity right away.
  10. I'm sorry Kalamazoo! That is miserable! My BP numbers are similar. TTT HR 179, BP was 178/87 after 1 minute, diastolic peaked at 91 at the second minute. It stabilized in the 140/80 range, which is more normal for me when standing, but then I run low like 95 - 100/60-65 most the time. My blood pooling is nowhere near as bad as yours though. My cardiologist said not to worry about the blood pressure that it's reactionary/secondary. IDK, pretty hard not to worry about numbers so high! He started me on florinef and it's surprisingly awesome. Really got lucky there!
  11. I hope this one is a final update. I'm on florinef 0.1 mg and my symptoms are all controlled. I am struggling with low appetite though. I am ecstatic, having some identity crisis. Very emtional, and happy tears. I have been able to shower, unload the dishwasher, put my toddler to bed. Little thing that seem insignificant, but I've never been able to do without distress and fatigue.
  12. Tilt table test done. Diagnosed with POTS. My HR went up 93bpm in the first minute! My blood pressure went up to 178/87 in the first minute! Stayed tachy and hypertensive the whole time. Violent tremors, legs gave out. Didn't faint, they stopped the test after 13 minutes. I was slow to recover, tremor for about half hour, couldn't walk for about an hour.
  13. I haven't been in our veggie garden for weeks. Hubby reports it is doing poorly. We are swamped with blueberries. If I'm well enough to stand I'm picking or canning blueberries.
  14. EKG results were sinus tachycardia, sinus bradycardia, sinus arrhythmia, ventricular premature complexes. Echocardiogram was normal. Holter results were "consistent with POTS" Tilt table test scheduled for August.
  15. Update!! I had a rough day yesterday, fell 10 times and fainted once. Hubby saw me faint. I've only fainted twice and he has seen both times. I'm glad. He pretty much has no idea what it's really like for me. I had cardiology appointment this morning. Cardiologist thinks it is POTS. They did EKG and I have 48 holter on now. Will have echocardiogram on Tuesday and tilt table test to be scheduled ASAP.
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