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Bigskyfam

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Everything posted by Bigskyfam

  1. Hope to me is that I still have the spark to go... To move...to stay in motion physically, mentally and emotionally...whether it's sitting upright, staying at work for a full shift or going to my kids events. Somedays it's opening my eyes. Hope is different for everyone
  2. Hello from across the globe. One thing I love is that when my Fam is asleep and I'm still awake I know someone somewhere is on dinet too.
  3. I've had my tubes tied after 3 pregnancies. I started with heavy cycles for past 3-4 years. I had a d&c and started ocp. Too nauseated. Tried a mirena. 6 months later I was bedbound with my first pots flare. I had it removed 6 months later and felt better without it. Cycles are starting again. While the idea of no period is grand... It needs to be investigated by a gyn with an ultrasound and/ labs. I'm more at risk for syncope/ headaches at ovulation and right at my cycle.
  4. What oils did they use? I found that when I'm lying face down for long period of time I feel weird after and my body has a harder time. So if my hubby gives me a massage it's with my head up higher than my heart
  5. Really bad nausea/ vomitting day... Peppermint oil.... Just the aroma calmed my system so I could keep down my powerade. We had some at work. Great place to be nauseated. Ended up going home. :/
  6. I started with cardiac rehab then to physical therapy. Both benefitted in different ways. Both can be claimed under insurance
  7. I'm so sorry to hear that you are struggling. Last week I had the first migraine I've ever had. Oh my. I went to ER, hubby drove me and they gave me a few meds. It was so nerve wracking because I kept telling them I have dysautonomia how will this effect it as I've never had the meds before. They kept me there and monitored me. I did not fill the preventative migraine med. I will chat with my specialist first. Rest, fluids and darkened room. Cool washcloth. They also gave me fluids. The meds made me feel loopy for a while, but migraine went away
  8. My first TTT had many inconsistancies. New nurse/ tech and my doc had never ran one before. She presented my case to the Electrophysiologist and they repeated the TTT at no charge. The tech and doc both familiar with POTS. I grabbed a copy of my TTT and compared the info with the research. I know how you are feeling. I was disappointed in a sense after the first TTT. How do you feel it wasn't performed correctly
  9. I understand! I can usually do a solid 3 days a week. While I get my work done in 3/5 days... My absences are frowned upon... Even with a doctors note.
  10. TTT was defining for me. The EP in the area who trained under dr suleman was essential to get my diagnosis in my small town. Treatment on the other hand....
  11. That's great that an er doc did that for you. It takes a village. My Fam prac doc noticed my borderline echo from nov2013... My local cardio at that time didn't bat an eye. Over a year later it's now mild and my arch is dilated. No explanation. No expectation. Repeat echo in 6 months. Frustrating. Sarah.... Interesting about the changes in EKG on medication. Katy.....sorry to hear about your mom..hope she improves daily Everybody.... We all get ekg testing, most of us holter monitor.... Are echo tests, MRI and stress tests essential as well? Any doc I've seen thus far has said your heart is healthy. No need for further heart testing unless it would make me worry less. I wish! Worry less. Thanks for keeping us updated gjensen
  12. Hormones wreak havoc on my system and emotions. Are you on any hormones?
  13. I haven't had changes on my EKG... But changes on my echo. My aortic root and arch have increased in dilation. No one had determined why. What's the doc say?
  14. I've been to one of those before. Kids had a blast. I can imagine the effect on your autonomic system. Are you working now?
  15. Yesterday great BP . Today nope. I've eaten chz meat and salty crackers powerade zero and water. I'd like to flip the switch. No meds. Riding it out I guess. No rhyme nor reason
  16. I was dx with pots fall 2013. Saw her last summer. Good visit. It was nice to have someone who sees and treats pots patients. Still looking for cause of my dysautonomia. My symptoms were better in portland...maybe elevation? We will see in April when I return if there's anything to that. I was in the wait list for 3 months or so
  17. Oily face/ back, wrinkly and dry on hands/ feet
  18. I'm in montana. I travel tonportland to see dr arden. Heading there in April
  19. I need that written on a bumper magnet Katy!!!!
  20. gjensen made me get out of bed to get my tissues. You guys are great!
  21. It takes a village... And a good historian. Write down whatever you can think of for your appointment. Docs are good at picking out the wheat from the chaff so to say. I got my testing and diagnosis quick... But then then didn't know what to do with me from there... So off to a specialist. You have a soft place to land with us and a place to vent and regroup.Blessings!
  22. Nice topic and replies! Trusting my gut and not second guessing! Finding out I'm the same person that I've always been just in a new form Telling people what I need/ want. Today that is taking the ER docs advice and staying home from work... Seriously best work note ever. He excused me for 1-2 days... My choice! I figured not a bad idea. First migraine ever. That'll go down in the ol journal
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