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Bigskyfam

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About Bigskyfam

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    Forum Ambassador
  • Birthday April 10

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    Female

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  1. I get ebbs and flows. I've had ebv, pregnancies and surgeries. Still searching for answers. Best I can come up with is eds3, mast cell and perfect storm...vaccine, surgery, stress, food reaction, hormones and virus in a short amount of time. Ive found winter months are worse and dead of summer of course. if you've seen a cardiologist and are cleared, find a fam practice doc that has interest in you and your condition. I've found they think more outside the box. D.O docs I've had luck with. all the best.
  2. Welcome new members! My sincerest apologies if I've missed anyone! Please reach out to any of us for any questions, concerns or help! elena194401 Elz MandiD EmandEms Alexandria jimmy walker Kirskies Kimberlee Minck Fordsen lll KyleCat evelynh outboxes dizzykris5 Lyv Lowlypopsmom Celtic Lava DaphP DanishGirl Abc71 GiGi Elain Lisag951 MollyTech Bookworm1919 llyons12665 Peacefuljo LauraM Jbabish Vicky Lo65 mmichalski23 Zebosgirl Luvmylife Christie marcus99 Finnminn Bladerunner CassandraA StephaniaN Cassandra Celia Kmasc worried-mom LillyGray IMOG Twodrifters DeeN hollzieanne AdriaW Elisa
  3. I had one episode caught on 30 day.. 11 beats long. Ep said no worries if self resolves and is occasional. I've cut out chocolate and Haven't Felt it since.
  4. Crockpot, meal prep with hubby, hubby grocery shops, pub height chair with a back and a fan or open window
  5. Welcome new members! I found this community years ago. DINET helped me find a provider, gave updated information on dysautonomia and provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns. My sincerest apologies if I've missed anyone. JH123 RachelAmanda comesatnight Bec1978 rohit7896 ForaDiagnosis524 hardtohavefun Mishifu Tasher Natti Angelomommie81 abbyrm Danny JenniferinDallas Laurel Nerbil Razzles sgreen54 Aspen osdowns cspeyer sreese68 natd
  6. Welcome new members! I found this community years ago. DINET helped me find a provider, gave updated information on dysautonomia and provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns. My sincerest apologies if I've missed anyone. BuffRockChick Pots1990 Frenzzzie Nan Shw ClaraM Betdeb EES25 Teresa Ginny52 pixiegram Shona Jacque Megants Sunshine92 Ajay kptosh
  7. My episodes while driving got increasing worse. I haven't driven in almost two years. My hubby and kids drive me. For me... I knew it was time to stop. Hoping to drive again. We do not have mass transit or public transit or even uber... so it's hard.
  8. Welcome new members! I found this community years ago. DINET helped me find a provider, gave updated information on dysautonomia and has provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns. Yum Yum GMDI Retrogurl7 Butter cup Karen B. CWright David Bama Kim KDUB elfinko Saw2112 Stephanie Flight272 ShadowHolder Shadow Laurah2011 Kam BuddyLove Farbetter Nlightenup Minkyboodle
  9. I've stopped driving over almost 2 years ago. It's too risky I feel given the fine one minute not the next and inability to stop safely to recoup
  10. Flip flops when I lay down quickly or turn over while laying happen to me. Worse with hormonal cycle. I've cut caffeine and most recently chocolate. Helped immensely. Also a quick visit to cardio to rule out anything out of my new potsy norm.
  11. I don't have one but carry benedryl on me at all times. Wish I had one. I had the allergy rast testing as opposed to skin... I've seen a few folks spiral after the skin testing... Found an allergy to egg. So food avoidance and no flu shot. My last flu shot might have been the straw that broke the camels back. It was the year of my initial pots flare. Beta blocker made me worse.
  12. I had extractions before pots and just recently... Both with iv sedation, no epi in the local anesthetic I met with oral surgeon before. We took things slow and made sure I was well hydrated. She gave me a half bag of normal saline during. I did well. Bled a bit longer than usual. Liquid diet. I don't have asthma... But I do have allergic reactions. I reacted to the antibiotic, so it was discontinued. Hope all goes well, let us know how it went.
  13. Mirena iud and hormones weren't good for this potsy. Here's hoping you find what's right for you!
  14. Sorry to hear. My hormones are a mess as I'm nearly 40. lack of cycle x 3 mos is my latest phenomenon.I had gestational dm with my last pregnancy and have hypo and hyperglycemia episodes but no labs consistent for diagnosis. I am on a low carb high protein diet...that's helped a bit. I don't tolerate progesterone and ocp causes headaches and nausea. So I'm in limbo too. Keep us posted
  15. Yay for still standing! I have not had experiences with ivig, but I can't wait to see what others have to say.
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