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Kelly470

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About Kelly470

  • Rank
    Newbie
  • Birthday 06/24/1980

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  • Gender
    Female
  • Location
    Cleveland, Ohio
  1. Good morning. I'm so glad I found this website! I'm seeing a rhematalogist on Friday. I'm really nervous about what I should say besides my symptoms & showing her clinical from 2012. It's old but at least she can see which tests were ordered & the clinical impression. I don't want to forget anything so I'm writing questions to ask based on my research but I'm all over the place! I say that b/c I don't know how to CONNECT THE DOTS! I need to learn how to manage this. I have a pacemaker (for complete heart block), POTS, PVCs, GERD, anxiety, depression, & ADD. I take meds & see a therapist. I think I may have the "brain fog" I've seen you guys talking about. My psych meds help a lot but sometimes from a BRAIN CHEMISTRY standpoint something is off. I sleep better then I used to thanks to melatonin. I dream a lot so I know I'm getting more REM sleep. Do they ever order sleep studies? I was diagnosed w/ POTS in 2012 by an EP. He said I have venous pooling & PVCs & put me on Bystolic. That medication worked well b/c I was lightheaded a lot when I worked on my feet. He said to wear compression stockings but I never did once I saw the price tag! He recommended that I increase my sodium & potassium levels. I drank tons of Gatorade but I find is disgusting but I found a GREAT alternative drink called Ultima Replenisher. I buy the 90 serving canisters. I recommend the ORANGE, RASPBERRY, & LEMONADE FLAVORS. $35 on Amazon. I buy 3 at a time but that will last almost 6 mo so it's worth it to me. I drink 4-5 bottles a day. ($.33 per serving in 16 oz bottle of water) https://www.ultimareplenisher.com/product/orange-90-serving-canister/ Basically I never took it seriously until the past year & now I feel that it is the "key" as to why I feel miserable sometimes. I don't do the exercises, wear compression stockings. I'm bad lol. The EP I have now d/c the Bystolic (I took it to help control PVCs) b/c I was complaining of constant shortness of breath. I had gotten an office job so once I was off my feet we determined that although the Bystolic helped to control my PVCs, I didn't need it once I wasn't working on my feet all say. He did a full cardiac workup including a stress test & echo & determined that the Bystolic was causing the SOB. I've been seeing this dr for 5 years. He's amazing & did my pacemaker replacement surgery. The EP that diagnosed me w/ POTS runs the syncope clinic at the Cleveland Clinic (heart center) BUT. ONLY sees patients in the syncope clinic. My best friend from Texas saw him & loved him. She doesn't jave POTS or dysautnomia but has an extremely rare heart condition & still has difficult despite multiple open heart & pacemaker surgeries. I'm extremely lucky to have the Cleveland Clinic in my "backyard." For those of you that are unaware, the Cleveland Clinic heart center has been ranked #1 in the nation for 27 years. I highly recommend Dr. Jaegar if you're constantly lighted &/or passing out. Patients usually come to him after being blown off or told "nothing is wrong w/ you." HE TAKES EVERY PATIENT EXTREMELY SERIOSLY & YOU'LL GO THROUGH A BATTERY OF TESTS BUT I'D BE SURPRISED IF HE DOESN'T HAVE AN ANSWER FOR YOU ONCE HE GETS THE TEST RESULTS. https://my.clevelandclinic.org/staff/620-fredrick-jaeger So, I'm not sure what to expect. I know she'll order a bunch of tests but what questions should I ask? I have my old clinical & test results from 2012 when I was first diagnosed. I figured even though it's old info she can still see what tests were ordered & the clinical impression. Thanks!
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