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Bigskyfam

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Everything posted by Bigskyfam

  1. Bigskyfam
    Yay!
  2. Bigskyfam
    I read every word. Wow. Seems like a long road and a heaping of determination. I'm in awe of all the life changes you've experienced while ill. Please keep us up to date
  3. Bigskyfam
    Wow. Looking forward to tomorrow!
  4. Bigskyfam
    What's your history ice lizard? I made it thru the day. Hope I don't pay for it tomorrow
  5. Bigskyfam
    I went to bathroom and was struggling with my compression gear. Today I've been at work spikes not over 120. Under 100 standing except of the stairs. Ugh 140s
  6. Bigskyfam
    Ok one moment and not the next. My new work norm. Went to fill in today for morning. Did great til my heart rate decided to spike to 140. Then it went downward. Full day tomorrow. Not sure what to do to prep. I don't have a subtype.. But I feel it to be norepinephrine surges. I work on my feet. I have a stool to sit on when needed... But when I need to sit I can't. At what point do I say maybe a sit down job is for me. I've only been back to work for 3 weeks. Diagnosed in October.
  7. Bigskyfam
    My landlord bought us a 6 by 6 piece of lumber. So elevated head by 6 inches. It eliminated my everyday headache, pressure. I still have random headaches. I got better sleep after this and fluids and wasn't napping during day then able to exercise. I added one lifestyle change at a time for a few days. That way I could see the effect it had on my symptoms
  8. Bigskyfam
    We've been there done that at one point or another. When one feels good we live. We go and do things... Sometimes I think it's double edged and others and even ourselves forget for a bit just how much of a Rollercoaster our disorder creates. No words of wisdom but know you aren't alone. Hope better days are ahead
  9. Bigskyfam
    Yay. I can't wait to hear about it!!!!! I'm in Montana. Nada out here. My Fam is there. Would love to go to vandy. Safe travels
  10. Bigskyfam
    Being sleep deprived makes me worse. I try my hardest to follow a schedule. I shut off electronics and talk to my hubby in bed. Chai latte. Baths/ showers at night
  11. Bigskyfam
    I was diagnosed with pots in nov, raynouds in dec. sorry you had the er visit. Glad you are being cared for. Keep us posted
  12. Bigskyfam
    Not my foot. But had that in my left thigh... Months before my disgnodis
  13. Bigskyfam
    Makes sense. I've had a tubal ligation. So birth control is used for hormones for me.
  14. Bigskyfam
    I have a variety depending on my activity level. 10-20 for up and down days, 20-30 if I'm on my feet consistently. If I'm up and down a lot, but sitting primarily, I wear compression workout shorts , not prescription. I found compression workout pants at the thrift store. My prescription strength was covered under insurance because I met my deductible last year so I got a few different styles.
  15. Bigskyfam
    I had these symptoms after starting a betablocker. I was told to go to urgent care.
  16. Bigskyfam
    Ah 2014. Have to start all over on my deductible.
  17. Bigskyfam
    I guess the trial and error part gets me without my subtype. Can't afford to make it to mayo or the pots treatment center
  18. Bigskyfam
    I have florinef here. Scared to start it after the beta blocker incident. I hear the side effects are headache, swelling and cycle irregularities. I'm thinking that ocp might help blood volume and cycle irregularities. In the past month my symptoms have been the moat frustrating for that 7-10 days. Just wish I had a doc that could lead by experience. I'm their first patient and don't have a subtype. Nice to hear from you Rama
  19. Bigskyfam
    My tilt table was $1800. Im 35 and feel I've had symptoms for a few years. I can't imagine having symptoms as a teenager. My girls are about your age. Prayers with you. I know how hard it is with insurance/ cost. They've referred me to mayo. Just can't get there. We have 5 kids
  20. Bigskyfam
    Me this week. Not 16 hr. but feeling like a slug. I think it's hormones and i hope it's short lived
  21. Bigskyfam
    Last week and this week I didn't exercise 3 times like normal and my sleep schedule is off with winter break with the kids. Curious if that will make a difference. Next week back on schedule. How do you supplement with salt? Food? Fluids?
  22. Bigskyfam
    Trice... That makes so much sense. I've had nausea on ocps. Corina... We were hopin Mirena would make a difference. Questioning if it makes it worse Thank you guys do much for reply. Not the most fun thing to discuss. But hey we are family right?
  23. Bigskyfam
    Hi.all those sx minus sweating. My tilt table made a difference in my diagnosis, but still unanswered questions for my subtype/ cause of pots. Glad you found us. You aren't in this alone.
  24. Bigskyfam
    Sorry guys.I've looked in past posts.. Don't know how to poll. I have menorrhagia and currently have a Mirena iud in place since march 2013. Cycle are lighter but with Pots symptoms and diagnosis this fall. It's worse. Feeling like this week knocks me a few steps back. Any thoughts appreciated.
  25. Bigskyfam
    That is comforting to hear. I have yet to go to er. I hope you feel better. Keep us posted
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