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Bigskyfam

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Everything posted by Bigskyfam

  1. Raising mine caused my daily headaches/ heaviness to go away. I slept at a Fam members house for one night in nov and it messed me up. Poor hubby doesn't even complain.
  2. Having same sx right now. Felt good this morn, even exercised 20 min on recumbent... Light switch after lunch. Bp higher, chest pain, some shortness of breath, flushing, tremors, fatigue
  3. I believe the younger you are when you display symptoms the better your chance of recovery.
  4. I passed my first ttt. Failed my 2nd within 5 min.
  5. Thanks for your posts! It means a lot to hear about symptoms off and on meds. I'm up to 2 days a week at work. I can relate to the symptoms at work. Off and on worsening and clearing of symptoms. I'm not on meds currently but wonder if I'm doing something right when I have those good hours or is it just the straightaway on the pots Rollercoaster
  6. Just a note to say hi, hello and thanks for posting. Even though I may not respond... I read every post. I'm still new and feel I don't have to much to add or advise. I think you all are a great intelligent and driven bunch of folks. I admire you all for different reasons and appreciate our friendship. Night all! Gotta get shut eye and attempt work in the morning. Had flurries of pots symptoms all weekend. Here's hopin it's just a fluke
  7. My sis was incredibly interested in my symptoms before I got a diagnosis, now she won't talk about my illness because I'm " still the same person and not defined by my illness". I guess it wasn't a terminal illness, so oh well
  8. I'm with a cardiologist and internist who are pushing meds... I'd like to get a subtype first. I've healed in leaps and bounds with just lifestyle changes. Still have a long way to go. I appreciate you guys thoughts.gjensen... You are a big help with your thought processes. We all have to think outside the box and together. I have found great comfort with you guys! Gotta go have some salt...little flurry Of symptoms.Overdid it today I think
  9. I'm new here. So if I had to guess based on my symptoms... A trigger leads to a flare either short term or longer term. Example... Today I've been to cardiac rehab, post office and shuttling kids and hubby. In store I leaned back to look at something, Started to see feel wierd, heart flutters, foggy, tired.... Then heart rate went up and it's stalled me. You realize it when you start to feel better
  10. Yay!!!! What is your treatment plan, meds, diet, exercise?
  11. Thanks for your thoughts. I'm in MT. Closest I think is az/tx
  12. Thanks guys. I talked to my doc last night. He was very straightforward and said i think this isnt urgent,give the bb a go. Been there done that didn't go well. yes it's a new one, bystolic I think...I've been doing so well then had the episode. I want to figure out the cause of episode not necessarily keep it from happening. They offer the testing here. Docs don't want to draw it. They want me to go to mayo, I can't. Frustrated.
  13. Unknown. No subtype yet. I have had a few dental procedures/ gyn surgery and was anemic for a while/ stress of kiddo in college/ stepdaughter with lupus... Hard to say.
  14. Feeling a bit better these days. Running errands with my daughter, while driving I felt tight in my chest, my heart hurt and was pounding. Glanced at my monitor... HR 170. This at 330... Since then, good resting rates, hr surges to 130-140 when standing then dropping to teens. Having the urge to pee every 20 min or so. I almost forgot I had POTS today. I do not have a subtype... Anyone think a norepinephrine level is in order?
  15. Did you start florinef? I have a rx haven't started yet. Med free. Getting a bit better everyday. I guess I'll know When I'm ready. Keep us posted
  16. You did it! Way to go! You know what to do. You've made it so far and learned how to adapt with your pots. This is no different. I can't wait to read your post after grad
  17. Oct 5,13 it hit me. Mid nov tilt table test. Thanks to Internet and the persistence of my doc whom i work for.I was bedridden for 1 month,barely moving for 1 month and started exercising end of nov at 5 min 3 times a week. I got a ride to the gym. It was exhausting. Now I'm up to 15 min 3x a week and can drive myself. I'm not on meds at moment and am going to work a few hours a week. I'm far away from autonomic clinics and due to my large Fam and small income. Hang in there. We are here and most importantly understand.
  18. Starting to feel like me... Before I crashed and was bedridden. Makes me wonder when I actually started to show symptoms. Med free still at moment. Elevated bed, fluids, salt, compression gear as needed... Exercise. Recumbent bike 15 min 3 times a week.
  19. I have 5kids 18,17,16,15,6. Dx with pots fall 2013. My hubby thinks it started with my last pregnancy. Was a difficult pregnancy. Struggled with gaining weight, gestational diabetes, preterm labor, csection and anemia afterward due to bloodloss. Bedridden for 1-2 months during dx. Hard for me, my Kids and hubby. Back and forth to school, activities and such. My hubby was mr mom for a while.i have 2 kids, hubby had two and we had 1 together. Would've loved to have more or even adopt. But now, I don't see it as an option. I'm able to drive, do housework at a slow pace and go to limited places.i work just a few hours. I hope to improve but fear setback. My kids were amazing during that time. Missing out on parent teacher conf, Afterschool activities was hard for me as mom. I'd always been an active mom. Took the kids shopping for clothes, fishing and to the rec areas here. Now,I've had to readjust. I don't want my kids taking care of me, especially at a young age. (36). Our oldest is off to college now 4 hrs away. Hard not being able to go pick her up take her back. She stayed home jan term to help here.. Even thiugh i said it was ok and to work to be able to pay here tuition. We can't help that much as we've had a drop in income. Our kids have always had enough but would've liked to give them more.
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